1
00:01:25,177 --> 00:01:26,945
YOU MAY ENTER ANY QUESTIONS 

2
00:01:26,945 --> 00:01:28,847
FOR THE SPEAKERS USING THE
Q&A 

3
00:01:28,847 --> 00:01:31,191
BOX IF YOU ARE ON THE TEAMS
WEBINAR.

4
00:01:31,191 --> 00:01:36,629
IF YOU ARE WATCHING VIA 

5
00:01:36,629 --> 00:01:40,700
VIDEOCAST SEND TO 

6
00:01:40,700 --> 00:01:43,670
ORWHINNOVATION@OD NNT NIH.GOV OR

7
00:01:43,670 --> 00:01:45,672
USE LIVE FEEDBACK BUTTON.

8
00:01:45,672 --> 00:01:47,040
WE WILL ANSWER QUESTIONS AS WE 

9
00:01:47,040 --> 00:01:47,674
ARE ABLE.

10
00:01:47,674 --> 00:01:49,342
NEXT SLIDE, PLEASE.

11
00:01:49,342 --> 00:01:51,010
THE AGENDA FOR TODAY IS SHOWN 

12
00:01:51,010 --> 00:01:53,680
HERE AND ALSO POSTED ON THE 

13
00:01:53,680 --> 00:01:54,013
EVENT WEBPAGE.

14
00:01:54,013 --> 00:01:58,084
NEXT SLIDE, PLEASE.

15
00:01:58,084 --> 00:02:00,987
AND WE ARE REALLY LOOKING 

16
00:02:00,987 --> 00:02:02,255
FORWARD TO TODAY'S SESSION.

17
00:02:02,255 --> 00:02:05,725
NEXT SLIDE, PLEASE.

18
00:02:05,725 --> 00:02:07,160
WE WILL FIRST HEAR FROM DR. 

19
00:02:07,160 --> 00:02:08,528
JANINE AUSTIN CLAYTON, THE 

20
00:02:08,528 --> 00:02:10,964
DIRECTOR OF THE NIH OFFICE OF 

21
00:02:10,964 --> 00:02:12,866
RESEARCH ON WOMEN'S HEALTH.

22
00:02:12,866 --> 00:02:14,834
DR. CLAYTON WAS APPOINTED 

23
00:02:14,834 --> 00:02:15,869
ASSOCIATE DIRECTOR FOR RESEARCH 

24
00:02:15,869 --> 00:02:17,670
ON WOMEN'S HEALTH AND DIRECTOR 

25
00:02:17,670 --> 00:02:22,642
OF ORWH IN 2012.

26
00:02:22,642 --> 00:02:25,412
DR. CLAYTON HAS STRENGTHENED NIH

27
00:02:25,412 --> 00:02:26,846
SUPPORT FOR RESEARCH ON 

28
00:02:26,846 --> 00:02:28,114
DISEASES, DISORDERS AND 

29
00:02:28,114 --> 00:02:29,983
CONDITIONS THAT AFFECT WOMEN.

30
00:02:29,983 --> 00:02:33,620
SHE IS THE ARCHITECT OF THE NIH 

31
00:02:33,620 --> 00:02:35,422
POLICY REQUIRING SCIENTISTS TO 

32
00:02:35,422 --> 00:02:37,390
CONSIDER SEX AS A BIOLOGICAL 

33
00:02:37,390 --> 00:02:39,125
VARIABLE ACROSS THE RESEARCH 

34
00:02:39,125 --> 00:02:39,459
SPECTRUM.

35
00:02:39,459 --> 00:02:42,695
A PART OF NIH'S INITIATIVE TO 

36
00:02:42,695 --> 00:02:44,497
ENHANCE REPRODUCEABILITY, RIGOR 

37
00:02:44,497 --> 00:02:45,732
AND TRANSPARENCY.

38
00:02:45,732 --> 00:02:48,501
IN 2021, DR. CLAYTON WAS ELECTED

39
00:02:48,501 --> 00:02:50,437
TO THE BOARD OF DIRECTORS OF THE

40
00:02:50,437 --> 00:02:52,539
AMERICAN ASSOCIATION FOR THE 

41
00:02:52,539 --> 00:02:54,374
ADVANCEMENT OF SCIENCE.

42
00:02:54,374 --> 00:02:56,776
BEFORE JOINING ORWH, DR. CLAYTON

43
00:02:56,776 --> 00:02:59,012
WAS THE DEPUTY CLINICAL DIRECTOR

44
00:02:59,012 --> 00:03:01,381
OF THE NATIONAL EYE INSTITUTE.

45
00:03:01,381 --> 00:03:05,118
AS A BOARD CERTIFIED 

46
00:03:05,118 --> 00:03:07,887
OPHTHALMOLOGIST, DR. CLAYndTON 

47
00:03:07,887 --> 00:03:11,057
HAS RESEARCH IN AUTOIMMUNE 

48
00:03:11,057 --> 00:03:12,459
OCULAR DISEASES AND SEX 

49
00:03:12,459 --> 00:03:13,426
DIFFERENCES IN DISEASE.

50
00:03:13,426 --> 00:03:17,597
DR. CLAYTON, OVER TO YOU.

51
00:03:17,597 --> 00:03:20,500
>> GREETINGS, EVERYONE.

52
00:03:20,500 --> 00:03:22,268
IT IS MY DISTINCT PLEASURE TO 

53
00:03:22,268 --> 00:03:25,238
WELCOME YOU TO TODAY'S EVENT, 

54
00:03:25,238 --> 00:03:27,273
WHICH HONORS THE FIRST FULL TIME

55
00:03:27,273 --> 00:03:31,110
DIRECTOR OF ORWH, AND ONE OF MY 

56
00:03:31,110 --> 00:03:33,847
MENTORS, DR. VIVIAN W. PINN.

57
00:03:33,847 --> 00:03:36,082
THE VIVIAN W. PINN SYMPOSIUM 

58
00:03:36,082 --> 00:03:37,951
OCCURS EVERY YEAR IN NATIONAL 

59
00:03:37,951 --> 00:03:40,253
WOMEN'S HEALTH WEEK AND NIH'S 

60
00:03:40,253 --> 00:03:41,788
FLAGSHIP EVENT TO RECOGNIZE 

61
00:03:41,788 --> 00:03:43,022
NATIONAL WOMEN'S HEALTH WEEK.

62
00:03:43,022 --> 00:03:46,125
THIS IS OUR FIRST EVENT OF 2025,

63
00:03:46,125 --> 00:03:49,662
I'M SO HAPPY TO SEE OUR PARTNERS

64
00:03:49,662 --> 00:03:51,631
AND COLLABORATORS TODAY.

65
00:03:51,631 --> 00:03:52,765
I WOULD LIKE TO THANK THE 

66
00:03:52,765 --> 00:03:54,901
MEMBERS OF THE NIH PLANNING 

67
00:03:54,901 --> 00:03:57,136
COMMITTEE WHO WORKED TIRELESSLY 

68
00:03:57,136 --> 00:03:59,506
OVER THE LAST FEW MONTHS AND 

69
00:03:59,506 --> 00:04:01,307
SPECIAL GRATITUDE FOR OUR 

70
00:04:01,307 --> 00:04:03,276
LOGISTICS AND SUPPORT STAFF, 

71
00:04:03,276 --> 00:04:08,047
SCIENTIFIC PARTNERS AND BEHIND 

72
00:04:08,047 --> 00:04:10,183
THE SCENE EFFORTS.

73
00:04:10,183 --> 00:04:12,785
ORWH IS CELEBRATING OUR 35th 

74
00:04:12,785 --> 00:04:13,920
ANNIVERSARY THIS SEPTEMBER, MUCH

75
00:04:13,920 --> 00:04:17,056
HAS CHANGED OVER THE LAST 3 1/2 

76
00:04:17,056 --> 00:04:18,324
DEKDSS, OUR MISSION AND NORTH 

77
00:04:18,324 --> 00:04:20,026
STAR REMAINED CONSTANT.

78
00:04:20,026 --> 00:04:22,562
TO PUT IT SIMPLY, WE ARE 

79
00:04:22,562 --> 00:04:24,931
COMMITTED TO ADVANCING RESEARCH 

80
00:04:24,931 --> 00:04:26,666
FOR THE HEALTH OF WOMEN.

81
00:04:26,666 --> 00:04:29,369
EVERYTHING WE DO IS IN SERVICE 

82
00:04:29,369 --> 00:04:32,805
OF OUR CONGRESSLY ESTABLISHED 

83
00:04:32,805 --> 00:04:36,075
MISSION, TO ENHANCE AND EXPAND 

84
00:04:36,075 --> 00:04:37,744
WOMEN'S HEALTH RESEARCH, ENSURE 

85
00:04:37,744 --> 00:04:40,280
WOMEN ARE WEM REPRESENTED IN 

86
00:04:40,280 --> 00:04:44,317
CLINICAL RESEARCH AND PROMOTE 

87
00:04:44,317 --> 00:04:44,984
CAREER ADVANCEMENT FOR WOMEN'S 

88
00:04:44,984 --> 00:04:45,718
HEALTH RESEARCHERS.

89
00:04:45,718 --> 00:04:52,825
THIS ALIGNS FOR THE NIH WOMEN'S 

90
00:04:52,825 --> 00:04:53,426
HEALTH.

91
00:04:53,426 --> 00:04:54,761
A WORLD WHERE EVERY WOMAN 

92
00:04:54,761 --> 00:04:59,132
RECEIVES EVIDENCE-BASED CARE 

93
00:04:59,132 --> 00:05:01,167
LORED TO CIRCUMSTANCE, GOALS AND

94
00:05:01,167 --> 00:05:03,403
NEEDS AND ALL WOMEN IN SCIENCE 

95
00:05:03,403 --> 00:05:04,437
CAREERS REACH THEIR FULL 

96
00:05:04,437 --> 00:05:06,139
POTENTIAL.

97
00:05:06,139 --> 00:05:07,040
NEXT SLIDE.

98
00:05:07,040 --> 00:05:11,644
IN 2000, THE VERY FIRST ORWH 

99
00:05:11,644 --> 00:05:12,645
SIGNATURE PROGRAM WAS 

100
00:05:12,645 --> 00:05:15,081
ESTABLISHED BY DR. PINN.

101
00:05:15,081 --> 00:05:17,283
BUILDING INTERDISCIPLINARY 

102
00:05:17,283 --> 00:05:19,285
CAREERS IN WOMEN'S HEALTH, 

103
00:05:19,285 --> 00:05:20,420
ESTABLISHED A NEW CONGRESSIONAL 

104
00:05:20,420 --> 00:05:21,454
APPROPRIATION.

105
00:05:21,454 --> 00:05:24,324
BIRCH IS A MENTORED CAREER 

106
00:05:24,324 --> 00:05:27,060
DEVELOPMENT PROGRAM DESIGNED TO 

107
00:05:27,060 --> 00:05:30,396
CONNECT JUNIOR FACULTY, BIRCH 

108
00:05:30,396 --> 00:05:32,365
SCHOLARS, WITH SENIOR FACULTY.

109
00:05:32,365 --> 00:05:35,435
SINCE THE PROGRAM WAS CREATED IN

110
00:05:35,435 --> 00:05:37,437
2000, OVER 800 JUNIOR FACULTY 

111
00:05:37,437 --> 00:05:41,741
HAVE BEEN PART OF THE BIRCH 

112
00:05:41,741 --> 00:05:43,743
CAREER PROGRAM FROM ORWH AND 

113
00:05:43,743 --> 00:05:45,545
AMONG ITS PARTNERS AND 

114
00:05:45,545 --> 00:05:46,946
INSTITUTES AND CENTERS.

115
00:05:46,946 --> 00:05:48,615
TWO YEARS LATER THE SCORE 

116
00:05:48,615 --> 00:05:50,516
PROGRAM WAS ESTABLISHED.

117
00:05:50,516 --> 00:05:52,151
SCORE IS NICHE'S ONLY 

118
00:05:52,151 --> 00:05:54,354
CENTER-LEVEL PROGRAM FOCUSED ON 

119
00:05:54,354 --> 00:05:57,023
SEX DIFFERENCES RESEARCH.

120
00:05:57,023 --> 00:05:59,592
EACH SERVES AS A NATIONAL 

121
00:05:59,592 --> 00:06:02,328
RESOURCE FOR TRANSLATIONAL 

122
00:06:02,328 --> 00:06:03,763
RESEARCH TO IDENTIFY AND BETTER 

123
00:06:03,763 --> 00:06:05,431
UNDERSTAND THE ROLE OF 

124
00:06:05,431 --> 00:06:06,299
BIOLOGICAL SEX DIFFERENCES ON 

125
00:06:06,299 --> 00:06:08,668
THE HEALTH OF WOMEN.

126
00:06:08,668 --> 00:06:11,638
THESE NIH SUPPORTED CENTERS OF 

127
00:06:11,638 --> 00:06:13,206
EXCELLENCE ARE VITAL HUBS FOR 

128
00:06:13,206 --> 00:06:15,375
RESEARCH ON SEX AND CAN PROVIDE 

129
00:06:15,375 --> 00:06:18,511
PILOT FUNDING, TRAINING AND 

130
00:06:18,511 --> 00:06:19,045
EDUCATION AND SCORE 

131
00:06:19,045 --> 00:06:20,246
INVESTIGATORS PROVIDE LEADERSHIP

132
00:06:20,246 --> 00:06:21,948
IN THE DEVELOPMENT AND PROMOTION

133
00:06:21,948 --> 00:06:27,053
OF STANDARDS RELATED TO SEX AS A

134
00:06:27,053 --> 00:06:28,254
BIOLOGICAL VARIABLE AND SEX 

135
00:06:28,254 --> 00:06:29,656
DIFFERENCES IN BIOMEDICAL 

136
00:06:29,656 --> 00:06:29,922
RESEARCH.

137
00:06:29,922 --> 00:06:34,427
IN 2016, WE HOSTED THE INAUGURAL

138
00:06:34,427 --> 00:06:35,261
VIVIAN W. PINN SYMPOSIUM.

139
00:06:35,261 --> 00:06:36,963
THE VALUE OF TRANSLATIONAL 

140
00:06:36,963 --> 00:06:38,931
RESEARCH TO WOMEN AND THE 

141
00:06:38,931 --> 00:06:41,167
NATIONAL CANCER INSTITUTE.

142
00:06:41,167 --> 00:06:42,568
2023 CONGRESS ESTABLISHED THE 

143
00:06:42,568 --> 00:06:44,837
OFFICE OF AUTOIMMUNE DISEASE 

144
00:06:44,837 --> 00:06:49,275
RESEARCH IN ORWH AND LAST YEAR 

145
00:06:49,275 --> 00:06:50,043
NEW STRATEGIC PLAN FOR RESEARCH 

146
00:06:50,043 --> 00:06:52,245
ON THE HEALTH OF WOMEN WAS 

147
00:06:52,245 --> 00:06:52,512
RELEASED.

148
00:06:52,512 --> 00:06:52,912
NEXT SLIDE.

149
00:06:52,912 --> 00:06:56,215
WE KNOW THE HEALTH OF WOMEN IS 

150
00:06:56,215 --> 00:06:59,085
AFFECTED BY MANY BIOLOGICAL, 

151
00:06:59,085 --> 00:07:00,887
SOCIAL, ENVIRONMENTAL FACTORS 

152
00:07:00,887 --> 00:07:02,588
ACROSS THE LIFE COURSE.

153
00:07:02,588 --> 00:07:03,990
THESE CAN INCLUDE BIOLOGICAL 

154
00:07:03,990 --> 00:07:06,359
SYSTEMS OR PROCESSES AND TRAITS 

155
00:07:06,359 --> 00:07:08,194
AS WELL AS LIFE CONTEXT AND THE 

156
00:07:08,194 --> 00:07:09,362
ENVIRONMENT.

157
00:07:09,362 --> 00:07:11,030
BROADLY DEFINED.

158
00:07:11,030 --> 00:07:13,266
A COMPLEX INTERSECTION OF A 

159
00:07:13,266 --> 00:07:14,500
MULTITUDE OF THESE IS INTERNAL 

160
00:07:14,500 --> 00:07:17,704
AND EXTERNAL FACTORS AFFECT THE 

161
00:07:17,704 --> 00:07:18,938
HEALTH STATUS, DISEASE 

162
00:07:18,938 --> 00:07:20,773
PRESENTATION AND TREATMENT 

163
00:07:20,773 --> 00:07:21,908
RESPONSE OF EACH WOMAN AS WELL 

164
00:07:21,908 --> 00:07:24,243
AS THE EFFECTS OF DISEASE AND 

165
00:07:24,243 --> 00:07:25,378
CONDITIONS ON A WOMAN'S QUALITY 

166
00:07:25,378 --> 00:07:28,114
OF LIFE.

167
00:07:28,114 --> 00:07:30,116
SO CONSIDERATION OF THESE 

168
00:07:30,116 --> 00:07:31,384
DYNAMIC FACTORS IS NECESSARY FOR

169
00:07:31,384 --> 00:07:33,886
A MORE COMPREHENSIVE 

170
00:07:33,886 --> 00:07:34,954
UNDERSTANDING OF THE HEALTH OF 

171
00:07:34,954 --> 00:07:35,154
WOMEN.

172
00:07:35,154 --> 00:07:37,623
NEXT SLIDE, PLEASE.

173
00:07:37,623 --> 00:07:40,660
WE ARE SO EXCITED TO CONVENE 

174
00:07:40,660 --> 00:07:43,029
TODAY'S EVENT FEATURING LEADING 

175
00:07:43,029 --> 00:07:44,997
VOICES IN DATA SCIENCE, 

176
00:07:44,997 --> 00:07:45,998
INNOVATION AND WOMEN'S HEALTH 

177
00:07:45,998 --> 00:07:50,536
AND I KNOW MANY OF YOU WILL 

178
00:07:50,536 --> 00:07:51,637
ENJOY OUR PRESENTATION.

179
00:07:51,637 --> 00:07:53,840
MANY MAY ALSO HAVE QUESTIONS 

180
00:07:53,840 --> 00:07:55,975
ABOUT RECENT CHANGES AT NIH AND 

181
00:07:55,975 --> 00:07:59,045
I CAN'T SPEAK TO THE STATUS OF 

182
00:07:59,045 --> 00:07:59,946
DELIBERATIONS OR SPECIFIC 

183
00:07:59,946 --> 00:08:03,449
SITUATIONS, HOWEVER, IF CAN 

184
00:08:03,449 --> 00:08:04,717
ASSURE YOU THAT MUCH REMAINS TO 

185
00:08:04,717 --> 00:08:07,353
BE EXCITED ABOUT IN WOMEN'S 

186
00:08:07,353 --> 00:08:09,222
HEALTH RESEARCH AND INENCOURAGE 

187
00:08:09,222 --> 00:08:12,125
YOU TO STAY IN TOUCH WITH US VIA

188
00:08:12,125 --> 00:08:14,026
OUR NEWSLETTER AND WEBSITE.

189
00:08:14,026 --> 00:08:17,630
WITH THAT, I WILL TURN IT BACK 

190
00:08:17,630 --> 00:08:17,830
OVER.

191
00:08:17,830 --> 00:08:20,133
>> THANK YOU SO MUCH, DR. 

192
00:08:20,133 --> 00:08:20,366
CLAYTON.

193
00:08:20,366 --> 00:08:22,335
AS WE SPEND THE DAY THINKING 

194
00:08:22,335 --> 00:08:23,803
ABOUT DATA-DRIVEN INNOVATIONS 

195
00:08:23,803 --> 00:08:25,772
FOR THE HEALTH OF WOMEN, WE 

196
00:08:25,772 --> 00:08:29,575
WANTED TO BEGIN BY HIGHLIGHTED 

197
00:08:29,575 --> 00:08:32,178
SELECTED DATA RESOURCES ACROSS 

198
00:08:32,178 --> 00:08:33,379
THE NIH AVAILABLE TO SUPPORT 

199
00:08:33,379 --> 00:08:35,648
DATA SCIENCE, DATA SHARING AND 

200
00:08:35,648 --> 00:08:38,351
INNOVATION ACROSS THE WOMEN'S 

201
00:08:38,351 --> 00:08:39,585
HEALTH RESEARCH ECOSYSTEM.

202
00:08:39,585 --> 00:08:42,955
AS YOU MAY KNOW IN 2021, NIH 

203
00:08:42,955 --> 00:08:44,991
ISSUED THE FINAL NIH POLICY FOR 

204
00:08:44,991 --> 00:08:47,059
DATA MANAGEMENT AND SHARING TO 

205
00:08:47,059 --> 00:08:49,629
PROMOTE SCIENTIFIC DATA SHARING.

206
00:08:49,629 --> 00:08:52,965
SHARING SCIENTIFIC DATA 

207
00:08:52,965 --> 00:08:54,867
ACCELERATES BIOMEDICAL RESEARCH 

208
00:08:54,867 --> 00:08:58,070
DISCOVERY AND RIGOR IN PART BY 

209
00:08:58,070 --> 00:08:59,071
ENNABLING VALIDATION OF RESEARCH

210
00:08:59,071 --> 00:09:00,807
RESULTS BY PROVIDING 

211
00:09:00,807 --> 00:09:02,108
ACCESSIBILITY TO HIGH-VALUE DATA

212
00:09:02,108 --> 00:09:05,111
SETS AND BY PROMOTING DATA REUSE

213
00:09:05,111 --> 00:09:08,281
FOR FUTURE RESEARCH STUDIES.

214
00:09:08,281 --> 00:09:12,218
AS OUTLINED IN THE NIH-WIDE 

215
00:09:12,218 --> 00:09:13,753
STRATEGIC PLAN FOR RESEARCH ON 

216
00:09:13,753 --> 00:09:15,288
THE HEALTH OF WOMEN, ADVANCING 

217
00:09:15,288 --> 00:09:17,690
SCIENCE FOR THE HEALTH OF WOMEN 

218
00:09:17,690 --> 00:09:19,158
REQUIRES DATA SCIENCE AND DATA 

219
00:09:19,158 --> 00:09:21,794
MANAGEMENT PRACTICES ALONGSIDE 

220
00:09:21,794 --> 00:09:24,263
INNOVATIVE RESEARCH METHODS, 

221
00:09:24,263 --> 00:09:26,532
MEASUREMENTS AND CUTTING EDGE 

222
00:09:26,532 --> 00:09:27,133
TECHNOLOGIES TO PREVENT AND 

223
00:09:27,133 --> 00:09:28,701
TREAT CONDITIONS THAT AFFECT 

224
00:09:28,701 --> 00:09:28,901
WOMEN.

225
00:09:28,901 --> 00:09:30,937
WE WILL HEAR FROM A NUMBER OF 

226
00:09:30,937 --> 00:09:34,640
PROGRAM STAFF ACROSS THE NIH WHO

227
00:09:34,640 --> 00:09:37,710
WILL INTRODUCE NIH DATA 

228
00:09:37,710 --> 00:09:42,315
RESOURCES AND REPOSITORIES.

229
00:09:42,315 --> 00:09:46,652
UP FIRST IS DR. LEE.

230
00:09:46,652 --> 00:09:49,922
THE VIRTUAL PODIUM IS YOURS.

231
00:09:49,922 --> 00:09:51,123
>> THANK YOU.

232
00:09:51,123 --> 00:09:54,060
I'M THE ACTING CHIEF ENGAGEMENT 

233
00:09:54,060 --> 00:09:59,065
OFFICER FOR ALL OF US AT THE 

234
00:09:59,065 --> 00:10:00,499
NATIONAL INSTITUTES OF HEALTH.

235
00:10:00,499 --> 00:10:05,438
BUILDING ONE OF THE LARGEST 

236
00:10:05,438 --> 00:10:10,209
RICHEST BIOMEDICAL RESEARCH OF 

237
00:10:10,209 --> 00:10:13,546
ITS TIME TO GAIN FINDINGS.

238
00:10:13,546 --> 00:10:15,581
WE HOPE THESE FINDINGS CAN BE 

239
00:10:15,581 --> 00:10:17,116
USED FOR ALL OF US.

240
00:10:17,116 --> 00:10:20,186
THE ALL OF US RESEARCH WORKBENCH

241
00:10:20,186 --> 00:10:22,421
IS A SECURE CLOUD BASED PLATFORM

242
00:10:22,421 --> 00:10:24,223
THAT THE DATA SET IS MADE 

243
00:10:24,223 --> 00:10:26,092
AVAILABLE TO RESEARCHERS 

244
00:10:26,092 --> 00:10:27,059
PROVIDING AN ENVIRONMENT FOR 

245
00:10:27,059 --> 00:10:30,096
DATA ANALYSIS AND COLLABORATION.

246
00:10:30,096 --> 00:10:31,430
ONLY RESEARCHERS WHOSE 

247
00:10:31,430 --> 00:10:32,965
INSTITUTIONS HAVE SIGNED A DATA 

248
00:10:32,965 --> 00:10:34,867
USE AND REGISTRATION AGREEMENT 

249
00:10:34,867 --> 00:10:38,437
CAN REGISTER FOR THE RESEARCHER 

250
00:10:38,437 --> 00:10:40,006
WORKBENCH.

251
00:10:40,006 --> 00:10:41,741
REGISTERED RESEARCHERS CAN GAIN 

252
00:10:41,741 --> 00:10:43,843
ACCESS TO INDIVIDUAL LEVEL DATA,

253
00:10:43,843 --> 00:10:45,211
GENOMIC DATA AND A SUITE OF 

254
00:10:45,211 --> 00:10:46,545
TOOLS AND RESOURCES TO SUPPORT 

255
00:10:46,545 --> 00:10:48,614
THEIR PRODUCTS.

256
00:10:48,614 --> 00:10:50,683
MANDATORY TRAININGS FOCUS ON 

257
00:10:50,683 --> 00:10:51,250
RESPONSIBILITY AND ETHICAL 

258
00:10:51,250 --> 00:10:53,953
RESEARCH USING THE DATA SET.

259
00:10:53,953 --> 00:10:56,222
WHILE THERE IS NO COST FOR 

260
00:10:56,222 --> 00:10:57,990
RESEARCHERS TO REGISTER WITH THE

261
00:10:57,990 --> 00:10:59,325
WORKBENCH AND BEGIN WORKING WITH

262
00:10:59,325 --> 00:11:02,295
THE DATA SET, RESEARCHERS WILL 

263
00:11:02,295 --> 00:11:04,263
INCUR COSTS FOR COMPUTATION AND 

264
00:11:04,263 --> 00:11:05,364
DATA STORAGE OVER A CERTAIN 

265
00:11:05,364 --> 00:11:05,564
TIME.

266
00:11:05,564 --> 00:11:09,669
NEXT SLIDE, PLEASE.

267
00:11:09,669 --> 00:11:11,737
WITH OUR RECENT FEBRUARY DATA 

268
00:11:11,737 --> 00:11:14,040
RELEASE, THE PROGRAM'S GENETIC 

269
00:11:14,040 --> 00:11:20,846
DATA SET NOW INCLUDES WHOLE 

270
00:11:20,846 --> 00:11:25,284
GENOME SEQUENCES FROM 414 

271
00:11:25,284 --> 00:11:28,020
PARTICIPANTS AND THE SEQUENCES 

272
00:11:28,020 --> 00:11:29,355
TO 2700.

273
00:11:29,355 --> 00:11:33,159
THE WORKBENCH INCLUDES 

274
00:11:33,159 --> 00:11:35,294
INFORMATION BY 633,000 

275
00:11:35,294 --> 00:11:35,661
PARTICIPANTS.

276
00:11:35,661 --> 00:11:39,198
THE DATA SET INCLUDES EXTENSIVE 

277
00:11:39,198 --> 00:11:42,735
GENOMIC DATA, ELECTRONIC HEALTH 

278
00:11:42,735 --> 00:11:47,073
DATA, FIT BIT, COGNITIVE AND 

279
00:11:47,073 --> 00:11:48,441
ELECTRONIC HEALTH DATA ALL OF 

280
00:11:48,441 --> 00:11:50,843
WHICH GIVE RESEARCHERS A 

281
00:11:50,843 --> 00:11:52,378
MULTIDIMENSIONAL VIEW TO STUDY 

282
00:11:52,378 --> 00:11:54,080
THE CONTINUUM OF HEALTH AND 

283
00:11:54,080 --> 00:11:54,747
DISEASE OVER TIME.

284
00:11:54,747 --> 00:11:58,317
NEXT SLIDE, PLEASE.

285
00:11:58,317 --> 00:12:01,487
WOMEN REPRESENT THE MAJORITY OF 

286
00:12:01,487 --> 00:12:03,556
OUR PARTICIPANTS WITH 63% OF THE

287
00:12:03,556 --> 00:12:10,363
ALL OF US DATA SET COMING FROM 

288
00:12:10,363 --> 00:12:13,499
ALMOST 336,000 DATA TYPES.

289
00:12:13,499 --> 00:12:16,168
THE DATA AND TOOLS AVAILABLE ON 

290
00:12:16,168 --> 00:12:18,671
THE RESEARCHER WORKBENCH CAN 

291
00:12:18,671 --> 00:12:21,407
ENABLE REGISTERED RESEARCHER TO 

292
00:12:21,407 --> 00:12:24,143
DELVE DEEPER INTO WOMEN'S HEALTH

293
00:12:24,143 --> 00:12:24,410
RESEARCH.

294
00:12:24,410 --> 00:12:27,913
I INVITE YOU TO TAKE A CLOSER 

295
00:12:27,913 --> 00:12:32,018
LOOK OR GO TO 

296
00:12:32,018 --> 00:12:32,451
RESEARCHALLOFUS.ORG.

297
00:12:32,451 --> 00:12:35,221
THANK YOU.

298
00:12:35,221 --> 00:12:36,689
>> THANK YOU, DR. LEE.

299
00:12:36,689 --> 00:12:40,059
WE WILL NOW HEAR FROM ROBIN 

300
00:12:40,059 --> 00:12:42,495
TAYLOR FROM THE NATIONAL LIBRARY

301
00:12:42,495 --> 00:12:42,962
OF MEDICINE.

302
00:12:42,962 --> 00:12:44,063
ROBIN, OVER TO YOU.

303
00:12:44,063 --> 00:12:45,598
>> THANK YOU, ELIZABETH.

304
00:12:45,598 --> 00:12:48,034
I'M ROBIN TAILOR, THE LEAD FOR 

305
00:12:48,034 --> 00:12:50,136
THE NIH COMMON DATA ELEMENT 

306
00:12:50,136 --> 00:12:50,936
REPOSITORY, WHICH HAS BEEN 

307
00:12:50,936 --> 00:12:53,272
HOSTED AND MANAGED BY THE 

308
00:12:53,272 --> 00:12:53,906
NATIONAL LIBRARY OF MEDICINE FOR

309
00:12:53,906 --> 00:12:54,907
10 YEARS.

310
00:12:54,907 --> 00:12:57,510
SO IN A MOMENT I WILL TALK ABOUT

311
00:12:57,510 --> 00:12:59,011
WHAT COMMON DATA ELEMENTS ARE, 

312
00:12:59,011 --> 00:13:02,114
BUT FIRST I WANT TO TELL YOU 

313
00:13:02,114 --> 00:13:03,783
ABOUT SOME OF THE BENEFITS OF 

314
00:13:03,783 --> 00:13:06,152
COMMON DATA ELEMENTS.

315
00:13:06,152 --> 00:13:07,887
CDEs HELP STANDARDIZE DATA 

316
00:13:07,887 --> 00:13:10,356
COLLECTION SO RESULTING DATA IS 

317
00:13:10,356 --> 00:13:10,689
INTEROPERABLE.

318
00:13:10,689 --> 00:13:13,592
THIS FACILITATES REUSE OF DATA, 

319
00:13:13,592 --> 00:13:14,894
ALLOWING US TO COMBINE AND 

320
00:13:14,894 --> 00:13:18,197
COMPARE DATA SETS.

321
00:13:18,197 --> 00:13:22,234
CDEs HELP IMPROVE DATA QUALITY, 

322
00:13:22,234 --> 00:13:26,639
INCREASING STATISTICAL POWER AND

323
00:13:26,639 --> 00:13:27,039
REPRODUCEABILITY.

324
00:13:27,039 --> 00:13:29,809
THEY HAVE PRACTICAL BENEFITS, 

325
00:13:29,809 --> 00:13:32,278
MAKING DATA COLLECTION AND 

326
00:13:32,278 --> 00:13:34,013
HARMONIZATION PROCESSES MORE 

327
00:13:34,013 --> 00:13:34,447
EFFICIENT.

328
00:13:34,447 --> 00:13:35,681
THEY CAN SAVE RESEARCHERS TIME 

329
00:13:35,681 --> 00:13:38,451
AS THEY ARE SETTING UP THEIR 

330
00:13:38,451 --> 00:13:39,051
STUDIES.

331
00:13:39,051 --> 00:13:39,952
THEY SUPPORT THE NIH DATA 

332
00:13:39,952 --> 00:13:42,321
MANAGEMENT AND SHARING POLICY.

333
00:13:42,321 --> 00:13:44,890
SO WHAT ARE COMMON DATA ELEMENTS

334
00:13:44,890 --> 00:13:45,825
OR CDEs?

335
00:13:45,825 --> 00:13:48,961
THERE IS A HIGH-LEVEL DEFINITION

336
00:13:48,961 --> 00:13:50,596
ON THIS SLIDE.

337
00:13:50,596 --> 00:13:51,730
I WILL FLUSH THAT OUT.

338
00:13:51,730 --> 00:13:55,701
THEY ARE STANDARDIZED PRECISELY 

339
00:13:55,701 --> 00:13:59,271
DEFINED QUESTIONS WITH A 

340
00:13:59,271 --> 00:14:01,707
SPECIFIED ALLOWABLE FORMAT AND 

341
00:14:01,707 --> 00:14:06,112
USED ACROSS SITES, STUDIES, 

342
00:14:06,112 --> 00:14:07,146
CLINICAL TRIALS TO ASSURE 

343
00:14:07,146 --> 00:14:09,014
CONSISTENT DATA COLLECTION.

344
00:14:09,014 --> 00:14:10,683
A QUESTION IS ALWAYS ASKED IN 

345
00:14:10,683 --> 00:14:12,918
THE SAME WAY AND RESPOND DENTS 

346
00:14:12,918 --> 00:14:15,387
HAVE THE SAME ANSWERS TO CHOOSE 

347
00:14:15,387 --> 00:14:15,588
FROM.

348
00:14:15,588 --> 00:14:18,657
THEY HAVE CLEARLY DEFINED 

349
00:14:18,657 --> 00:14:18,924
SEMANTICS.

350
00:14:18,924 --> 00:14:21,994
THEY CAN BE COMPARED TO OR 

351
00:14:21,994 --> 00:14:24,196
HARMONIZED WITH OTHER CDEs BASED

352
00:14:24,196 --> 00:14:26,232
ON THEIR MEANING.

353
00:14:26,232 --> 00:14:27,967
THE MOST ESSENTIAL THING IS THEY

354
00:14:27,967 --> 00:14:30,102
ARE USED CONSISTENTLY ACROSS 

355
00:14:30,102 --> 00:14:33,105
DIFFERENT STUDIES OR SITES OR 

356
00:14:33,105 --> 00:14:33,739
TRIALS.

357
00:14:33,739 --> 00:14:36,408
FOR THIS REASON NIH STRONGLY 

358
00:14:36,408 --> 00:14:39,211
ENCOURAGES THE USE OF CDEs IN 

359
00:14:39,211 --> 00:14:39,612
RESEARCH.

360
00:14:39,612 --> 00:14:41,981
THE SCIENTIFIC DATA COUNCIL 

361
00:14:41,981 --> 00:14:44,517
FORMED THE NIH CDE GOVERNANCE 

362
00:14:44,517 --> 00:14:44,817
COMMITTEE.

363
00:14:44,817 --> 00:14:46,952
THE GOVERNANCE COMMITTEE REVIEWS

364
00:14:46,952 --> 00:14:49,355
CDEs THAT ARE SUBMITTED TO THEM 

365
00:14:49,355 --> 00:14:53,025
AND DECIDE WHETHER THEY MERIT 

366
00:14:53,025 --> 00:14:56,028
DESIGNATION OF NIH ENDORSED.

367
00:14:56,028 --> 00:14:57,830
WE WORK WITH THE REPOSITORY TEAM

368
00:14:57,830 --> 00:14:59,665
AT NLM.

369
00:14:59,665 --> 00:15:03,602
ONCE THE CDE'S ARE ENDORSED, 

370
00:15:03,602 --> 00:15:06,338
THEY ARE PUBLISHED IN THE CDE 

371
00:15:06,338 --> 00:15:06,839
REPOSITORY.

372
00:15:06,839 --> 00:15:08,807
THE CDE REPOSITORY IS FREE AND 

373
00:15:08,807 --> 00:15:10,209
AVAILABLE TO THE PUBLIC.

374
00:15:10,209 --> 00:15:12,745
IT CURRENTLY HAS OVER 

375
00:15:12,745 --> 00:15:17,082
22,000CDEs, WHICH INCLUDE 177 

376
00:15:17,082 --> 00:15:18,050
NIH ENDORSED.

377
00:15:18,050 --> 00:15:19,518
A RELATIVELY SMALL NUMBER, BUT 

378
00:15:19,518 --> 00:15:20,920
IT IS GOING UP.

379
00:15:20,920 --> 00:15:25,391
THERE ARE A WIDE VARIETY OF 

380
00:15:25,391 --> 00:15:27,526
DISEASES, DOMAINS AND TOPICS 

381
00:15:27,526 --> 00:15:30,029
INCLUDING CDEs ABOUT WOMEN'S 

382
00:15:30,029 --> 00:15:30,362
HEALTH.

383
00:15:30,362 --> 00:15:32,231
IF YOU BROWSE THE REPOSITORY 

384
00:15:32,231 --> 00:15:35,701
SOME CDEs ARE FLAGGED AS GOLD 

385
00:15:35,701 --> 00:15:35,935
RIBBON.

386
00:15:35,935 --> 00:15:38,604
THAT IS THE NICHE ENDORSED CDEs 

387
00:15:38,604 --> 00:15:40,973
AND THE ONES NOT YET ENDORSED.

388
00:15:40,973 --> 00:15:43,475
THE ONES NOT YET ENDORSED 

389
00:15:43,475 --> 00:15:45,477
DOESN'T MEAN THEY ARE NOT VALID,

390
00:15:45,477 --> 00:15:47,046
THEY JUST HAVEN'T BEEN THROUGH 

391
00:15:47,046 --> 00:15:48,414
THAT PROCESS YET.

392
00:15:48,414 --> 00:15:51,050
THERE ARE SOME CDE RESOURCES YOU

393
00:15:51,050 --> 00:15:52,551
CAN ACCESS ON YOUR OWN TIME.

394
00:15:52,551 --> 00:15:54,486
YOU CAN FIND THEM FROM THE 

395
00:15:54,486 --> 00:15:57,022
RESOURCES PAGE FROM THE CDE 

396
00:15:57,022 --> 00:15:57,623
REPOSITORY WEBSITE.

397
00:15:57,623 --> 00:16:01,594
THERE IS A SELF-PACED BASIC 

398
00:16:01,594 --> 00:16:03,495
TUTORIAL, THERE IS AN ON-DEMAND 

399
00:16:03,495 --> 00:16:06,532
COURSE USING THE CDE REPOSITORY 

400
00:16:06,532 --> 00:16:11,036
WITH A RECORDING AND INTERACTIVE

401
00:16:11,036 --> 00:16:11,303
EXERCISES.

402
00:16:11,303 --> 00:16:21,847
YOU CAN CONTACT US AT 

403
00:16:21,847 --> 00:16:22,214
SUPPORT.NLM.NIH.GOV.

404
00:16:22,214 --> 00:16:25,050
>> UP NEXT WE WILL HEAR
FROM 

405
00:16:25,050 --> 00:16:26,652
LAURA BARTLETT FROM THE NATIONAL

406
00:16:26,652 --> 00:16:27,119
LIBRARY OF MEDICINE.

407
00:16:27,119 --> 00:16:28,487
WELCOME, LAURA.

408
00:16:28,487 --> 00:16:29,622
>> THANK YOU.

409
00:16:29,622 --> 00:16:31,023
GOOD AFTERNOON, EVERYONE.

410
00:16:31,023 --> 00:16:36,895
I'M EXCITED TO INTRODUCE YOU TO 

411
00:16:36,895 --> 00:16:39,898
DISCOVER WHR, A NEW RESOURCE TO 

412
00:16:39,898 --> 00:16:42,301
FACILITATE THE DISCOVERY OF 

413
00:16:42,301 --> 00:16:43,569
WOMEN'S HEALTH RESEARCH.

414
00:16:43,569 --> 00:16:45,671
THIS EFFORT IS A COLLABORATION 

415
00:16:45,671 --> 00:16:47,973
BETWEEN THE NATIONAL LIBRARY OF 

416
00:16:47,973 --> 00:16:50,209
MEDICINE AND THE OFFICE OF 

417
00:16:50,209 --> 00:16:52,578
RESEARCH ON WOMEN'S HEALTH.

418
00:16:52,578 --> 00:16:57,016
LAUNCHED IN SEPTEMBER, 2024, 

419
00:16:57,016 --> 00:16:59,885
DISCOVER WHR IS DESIGNED TO BE A

420
00:16:59,885 --> 00:17:02,054
FRONT DOOR FOR RESEARCHERS TO 

421
00:17:02,054 --> 00:17:04,790
LOCATE INFORMATION ON NIH 

422
00:17:04,790 --> 00:17:06,792
SUPPORTED GRANTS, INTRAMURAL 

423
00:17:06,792 --> 00:17:11,063
RESEARCH, CLINICAL TRIALS AND 

424
00:17:11,063 --> 00:17:11,964
LITERATURE.

425
00:17:11,964 --> 00:17:15,401
OUR TEAM USES A DATA-DRIVEN 

426
00:17:15,401 --> 00:17:16,068
PRIORITIZATION TOOL TO SELECT 

427
00:17:16,068 --> 00:17:19,038
RESEARCH AREAS AND WE IMPLEMENT 

428
00:17:19,038 --> 00:17:20,506
FEEDBACK FROM USERS LIKE YOU.

429
00:17:20,506 --> 00:17:24,476
NEXT SLIDE, PLEASE.

430
00:17:24,476 --> 00:17:27,980
THE PORTAL USES NIH RESOURCES TO

431
00:17:27,980 --> 00:17:31,717
DELIVER THE MOST UP-TO-DATE 

432
00:17:31,717 --> 00:17:33,152
INFORMATION BY DYNAMICALLY 

433
00:17:33,152 --> 00:17:36,622
RETRIEVING DATA IN REAL TIME.

434
00:17:36,622 --> 00:17:37,356
THOSE INFORMATION RESOURCES 

435
00:17:37,356 --> 00:17:40,025
INCLUDE FUNDING OPPORTUNITIES 

436
00:17:40,025 --> 00:17:41,460
SUPPLIED BY THE NIH GUIDE FOR 

437
00:17:41,460 --> 00:17:44,596
GRANTS AND CONTRACTS.

438
00:17:44,596 --> 00:17:47,900
AWARDED PROJECTS SUPPLIED BY NIH

439
00:17:47,900 --> 00:17:49,335
REPORTER.

440
00:17:49,335 --> 00:17:53,806
CLINICAL TRIALS SUPPLIED BY 

441
00:17:53,806 --> 00:17:54,473
CLINICALTRIALS.GOV.

442
00:17:54,473 --> 00:17:55,874
SCIENTIFIC LITERATURE SUPPLIED 

443
00:17:55,874 --> 00:18:00,145
BY PUBMED AND PATIENT-FRIENDLY 

444
00:18:00,145 --> 00:18:02,781
HEALTH TOPIC SUMMARIES SUPPLIED 

445
00:18:02,781 --> 00:18:05,517
BY MEDLINE PLUS.

446
00:18:05,517 --> 00:18:06,885
CURRENTLY THERE ARE FIVE 

447
00:18:06,885 --> 00:18:17,329
RESEARCH AREAS AVAILABLE, 

448
00:18:17,763 --> 00:18:21,467
MENOPAUSE, OUR TEAM IS 

449
00:18:21,467 --> 00:18:23,635
DEVELOPING NEW RESEARCH AREAS 

450
00:18:23,635 --> 00:18:26,638
AND MANY NEW ONES WILL BE 

451
00:18:26,638 --> 00:18:27,439
RELEASED OVER THE SURMT.

452
00:18:27,439 --> 00:18:31,043
SOME OF THOSE ARE LISTED ON THE 

453
00:18:31,043 --> 00:18:33,178
SLIDE.

454
00:18:33,178 --> 00:18:35,948
ORWH AND NLM WILL UPDATE 

455
00:18:35,948 --> 00:18:38,550
DISCOVER WHR WITH ADDITIONAL NIH

456
00:18:38,550 --> 00:18:40,686
FUNDED RESEARCH AREA AND 

457
00:18:40,686 --> 00:18:40,953
RESOURCES.

458
00:18:40,953 --> 00:18:43,021
COMMON DATA ELEMENTS, DATA 

459
00:18:43,021 --> 00:18:46,024
SOURCES AND STANDARDIZED 

460
00:18:46,024 --> 00:18:46,692
TERMINOLOGIES.

461
00:18:46,692 --> 00:18:49,261
DATA SCIENCE TOOLS SUCH AS 

462
00:18:49,261 --> 00:18:49,895
ARTIFICIAL INTELLIGENCE WILL 

463
00:18:49,895 --> 00:18:53,665
ALSO BE ADDED TO THE SITE.

464
00:18:53,665 --> 00:18:56,001
AND OUR OVERALL GOAL AND MISSION

465
00:18:56,001 --> 00:18:58,670
IS THAT USERS WILL BE ABLE TO 

466
00:18:58,670 --> 00:19:00,973
QUICKLY LOCATE NIH-FUNDED 

467
00:19:00,973 --> 00:19:02,408
RESEARCH AND CLOSE GAPS IN 

468
00:19:02,408 --> 00:19:05,611
WOMEN'S HEALTH ACROSS THE LIFE 

469
00:19:05,611 --> 00:19:05,844
COURSE.

470
00:19:05,844 --> 00:19:10,249
SO PLEASE VISIT THE DISCOVER WHR

471
00:19:10,249 --> 00:19:12,217
WEBSITE AND PROVIDE OUR TEAM 

472
00:19:12,217 --> 00:19:14,820
WITH ANY FEEDBACK VIA THE GIVE 

473
00:19:14,820 --> 00:19:15,721
FEEDBACK BUTD ON THE YOU WILL 

474
00:19:15,721 --> 00:19:17,589
SEE ON THE PAGE.

475
00:19:17,589 --> 00:19:20,125
SINCE WE ARE A NEW RESOURCE WE 

476
00:19:20,125 --> 00:19:27,232
ARE ALWAYS LOOKING TO GROW AND 

477
00:19:27,232 --> 00:19:27,466
IMPROVE.

478
00:19:27,466 --> 00:19:28,867
THANK YOU.

479
00:19:28,867 --> 00:19:29,902
>> THANK YOU.

480
00:19:29,902 --> 00:19:34,440
UP NEXT WE WILL HEAR FROM DR. 

481
00:19:34,440 --> 00:19:38,243
JANET KARAMOTO CRAWFORD ON THE 

482
00:19:38,243 --> 00:19:39,912
NATIONAL INSTITUTE ON DRUG 

483
00:19:39,912 --> 00:19:40,446
ABUSE.

484
00:19:40,446 --> 00:19:41,013
WELCOME, JANET.

485
00:19:41,013 --> 00:19:42,514
>> THANK YOU, ELIZABETH.

486
00:19:42,514 --> 00:19:43,382
GOOD AFTERNOON EVERYONE.

487
00:19:43,382 --> 00:19:44,783
IMMATERIAL IS MY PLEASURE TO 

488
00:19:44,783 --> 00:19:48,287
SPEAK ABOUT THE NATIONAL 

489
00:19:48,287 --> 00:19:49,354
ADDICTION AND HIV ARCHIVE 

490
00:19:49,354 --> 00:19:49,588
PROGRAM.

491
00:19:49,588 --> 00:19:52,024
IT IS A DATA ROW POZ TERRY 

492
00:19:52,024 --> 00:19:52,958
FUNDED BY THE NATIONAL INSTITUTE

493
00:19:52,958 --> 00:19:54,827
ON DRUG ABUSE AND THEIR MISSION 

494
00:19:54,827 --> 00:19:58,864
IS TO ACQUIRE, PRESERVE AND 

495
00:19:58,864 --> 00:20:01,800
DISSEMINATE DATA RELEVANT TO 

496
00:20:01,800 --> 00:20:05,237
DRUG ADDICTION RESEARCH AND THE 

497
00:20:05,237 --> 00:20:06,805
INTERSECTION OF DRUG ADDICTION 

498
00:20:06,805 --> 00:20:07,973
AND HIV.

499
00:20:07,973 --> 00:20:10,209
IT HAS BEEN AROUND SINCE 2009 

500
00:20:10,209 --> 00:20:15,047
AND HAS MADE 600 STUDIES 

501
00:20:15,047 --> 00:20:19,751
AVAILABLE TO THE RESEARCH 

502
00:20:19,751 --> 00:20:20,319
COMMITTEE.

503
00:20:20,319 --> 00:20:22,521
THE ANNUAL SURVEY OF DRUG AND 

504
00:20:22,521 --> 00:20:25,023
ALCOHOL USE AND RELATED 

505
00:20:25,023 --> 00:20:26,859
ATTITUDES OF STUDENTS AS WELL AS

506
00:20:26,859 --> 00:20:27,860
POPULATION ASSESSMENT OF TOBACCO

507
00:20:27,860 --> 00:20:32,231
AND HEALTH STUDY, WHICH IS A 

508
00:20:32,231 --> 00:20:35,033
NATIONAL LONGITUDINAL STUDY FOR 

509
00:20:35,033 --> 00:20:39,037
TOBACCO ABUSE.

510
00:20:39,037 --> 00:20:42,774
N  NIDA PROVIDES DATA MANAGEMENT

511
00:20:42,774 --> 00:20:44,543
AND SHARING COSTS.

512
00:20:44,543 --> 00:20:47,045
AND IN TERMS OF DATA PREPARATION

513
00:20:47,045 --> 00:20:49,581
AND PROVIDING LETTERS OF SUPPORT

514
00:20:49,581 --> 00:20:51,617
FOR GRANT APPLICATIONS.

515
00:20:51,617 --> 00:20:55,187
NEXT SLIDE, PLEASE.

516
00:20:55,187 --> 00:21:01,493
A LITTLE MORE ABOUT NIDA, IT 

517
00:21:01,493 --> 00:21:03,462
ACCEPTS QUANTITATIVE, 

518
00:21:03,462 --> 00:21:05,831
QUALITATIVE AND IMAGING DATA, 

519
00:21:05,831 --> 00:21:07,833
DATA RELEVANT TO WOMEN'S HEALTH 

520
00:21:07,833 --> 00:21:09,334
RELATED TO DRUG ADDICTION, HIV 

521
00:21:09,334 --> 00:21:10,769
AND RELATED OUTCOMES.

522
00:21:10,769 --> 00:21:13,071
THERE IS TYPICALLY NO COST TO 

523
00:21:13,071 --> 00:21:15,007
USE THE DATA.

524
00:21:15,007 --> 00:21:17,976
THE RESEARCHERS LOOKING TO DEPOZ

525
00:21:17,976 --> 00:21:22,314
THE DATA ARE ENCOURAGED FOR THE 

526
00:21:22,314 --> 00:21:23,949
DATA DEPOSITION COST AT THE TIME

527
00:21:23,949 --> 00:21:28,453
THEY SUBMIT THE APPLICATION.

528
00:21:28,453 --> 00:21:31,056
MANY SAY NIDA HAS BEEN COVERING 

529
00:21:31,056 --> 00:21:33,892
THE DEPOSITION COST IF APPROVED 

530
00:21:33,892 --> 00:21:35,127
BY THE NIDA PROGRAM.

531
00:21:35,127 --> 00:21:37,563
THERE ARE A FEW STUDIES 

532
00:21:37,563 --> 00:21:40,332
AVAILABLE AS RESTRICTED CONTROL 

533
00:21:40,332 --> 00:21:41,800
WITH SENSITIVE INFORMATION.

534
00:21:41,800 --> 00:21:45,470
THE MAJORITY OF THE DATA IN NIDA

535
00:21:45,470 --> 00:21:48,507
IS PUBLIC USE THAT CAN BE 

536
00:21:48,507 --> 00:21:49,041
DOWNLOADED.

537
00:21:49,041 --> 00:21:51,310
CONTROL DATA USERS MUST APPLY TO

538
00:21:51,310 --> 00:21:53,478
ACCESS FOLLOWING SPECIFIC 

539
00:21:53,478 --> 00:21:56,682
PROCEED YOURS TO ENSURE PRIVACY 

540
00:21:56,682 --> 00:21:57,349
AND CONFIDENTIALITY.

541
00:21:57,349 --> 00:21:59,585
WE OFFER VARIOUS WEBINARS ON HOW

542
00:21:59,585 --> 00:22:03,522
TO USE AND SHARE THE DATA MADE 

543
00:22:03,522 --> 00:22:08,594
AVAILABLE IN NIDA.

544
00:22:08,594 --> 00:22:10,028
AND THERE ARE WORKSHOPS.

545
00:22:10,028 --> 00:22:12,731
THANK YOU FOR ALLOWING ME TO 

546
00:22:12,731 --> 00:22:14,232
TALK ABOUT NIDA.

547
00:22:14,232 --> 00:22:16,435
>> THANK YOU SO MUCH,
JANET.

548
00:22:16,435 --> 00:22:19,938
>> UP NEXT DR. VANESSA
MARSHALL 

549
00:22:19,938 --> 00:22:21,840
ON THE NATIONAL INSTITUTE OF 

550
00:22:21,840 --> 00:22:23,342
MINORITY HEALTH AND HEALTH 

551
00:22:23,342 --> 00:22:24,109
DISPARITIES.

552
00:22:24,109 --> 00:22:27,646
VANESSA, OVER TO YOU.

553
00:22:27,646 --> 00:22:29,448
>> HELLO, EVERYONE.

554
00:22:29,448 --> 00:22:35,053
MY NAME IS DR. VANESSA MARSHALL,

555
00:22:35,053 --> 00:22:37,089
A PROGRAM OFFICIAL TO A MINORITY

556
00:22:37,089 --> 00:22:40,492
HEALTH AND HEALTH DISPARITIES.

557
00:22:40,492 --> 00:22:42,394
AND TODAY I WILL BE SPEAKING 

558
00:22:42,394 --> 00:22:46,331
ABOUT THE PHENX, A PROJECTED 

559
00:22:46,331 --> 00:22:48,433
FUNDED SINCE 2007 AND 

560
00:22:48,433 --> 00:22:50,602
ADMINISTRATED BY THE NATIONAL 

561
00:22:50,602 --> 00:22:52,704
HUMAN GENOME RESEARCH INSTITUTE 

562
00:22:52,704 --> 00:22:54,640
WITH CO-FUNDING WITH OTHER NIH 

563
00:22:54,640 --> 00:22:59,044
INSTITUTES AND CENTERS, 

564
00:22:59,044 --> 00:23:00,145
INCLUDING THE NATIONAL INSTITUTE

565
00:23:00,145 --> 00:23:03,181
ON MINORITY HEALTH AND HEALTH 

566
00:23:03,181 --> 00:23:05,684
DISPARITIES, THE OFFICE OF HEART

567
00:23:05,684 --> 00:23:07,986
BLOOD LUNG INSTITUTE, THE OFFICE

568
00:23:07,986 --> 00:23:10,355
OF DISEASE PREVENTION AND THE 

569
00:23:10,355 --> 00:23:11,657
NATIONAL INSTITUTE OF 

570
00:23:11,657 --> 00:23:13,258
NEUROLOGICAL DISORDERS AND 

571
00:23:13,258 --> 00:23:13,992
STRUCK AND THE NATIONAL 

572
00:23:13,992 --> 00:23:16,628
INSTITUTE OF DRUG ABUSE.

573
00:23:16,628 --> 00:23:18,730
IN ADDITION PRIOR FUNDING FOR 

574
00:23:18,730 --> 00:23:20,399
PHENX HAS BEEN PROVIDED BY OTHER

575
00:23:20,399 --> 00:23:24,503
INSTITUTES AND CENTERS.

576
00:23:24,503 --> 00:23:26,705
THIS IS A FREE ONLINE RESOURCE.

577
00:23:26,705 --> 00:23:30,509
IT IS A CATALOG OF RECOMMENDED 

578
00:23:30,509 --> 00:23:31,877
STANDARD DATA COLLECTION 

579
00:23:31,877 --> 00:23:33,745
PROTOCOLS.

580
00:23:33,745 --> 00:23:43,021
PHENX IS A WEB BASED CATALOG FOR

581
00:23:43,021 --> 00:23:49,394
PHENO TYPES IN TRANSLATIONAL 

582
00:23:49,394 --> 00:23:50,962
STUDIES WITH CONSISTENT DATA 

583
00:23:50,962 --> 00:23:52,097
COLLECTION PROVIDING DETAILED 

584
00:23:52,097 --> 00:23:54,766
PROTOCOLS FOR COLLECTED NEW DATA

585
00:23:54,766 --> 00:23:56,401
VIA DIFFERENT MODES OF 

586
00:23:56,401 --> 00:23:57,335
ADMINISTRATION.

587
00:23:57,335 --> 00:24:00,739
STUDIES USED FOR PHENX PROTOCOLS

588
00:24:00,739 --> 00:24:02,407
BENEFIT FROM CROSS STUDY 

589
00:24:02,407 --> 00:24:04,376
ANALYSIS TO INCREASE STATISTICAL

590
00:24:04,376 --> 00:24:06,578
POWER AND TO REPLICATE RESULTS.

591
00:24:06,578 --> 00:24:10,816
THE PHENX TOOLKIT HAS ADDED 

592
00:24:10,816 --> 00:24:14,519
PROTOCOLS FOR MEASURES SUCH AS 

593
00:24:14,519 --> 00:24:16,588
DEMOGRAPHIC, SOCIAL 

594
00:24:16,588 --> 00:24:19,357
ENVIRONMENTS, PHYSICAL ACTIVITY,

595
00:24:19,357 --> 00:24:20,759
REPRODUCTIVE HEALTH CONDITION.

596
00:24:20,759 --> 00:24:26,031
ADDITIONAL PHENX TOOLKIT HAS THE

597
00:24:26,031 --> 00:24:27,032
SPECIALTY COLLECTIONS SUCH AS 

598
00:24:27,032 --> 00:24:28,600
SOCIAL DETERMINANTS OF HEALTH.

599
00:24:28,600 --> 00:24:31,169
IN 2018 THE SOCIAL DETERMINANTS 

600
00:24:31,169 --> 00:24:32,871
OF HEALTH COLLECTION WAS 

601
00:24:32,871 --> 00:24:35,107
LAUNCHED BY THE NATIONAL 

602
00:24:35,107 --> 00:24:37,008
INSTITUTE OF MINORITY HEALTH AND

603
00:24:37,008 --> 00:24:39,044
HEALTH DISPARITIES.

604
00:24:39,044 --> 00:24:41,646
THIS TOOLKIT, SOCIAL 

605
00:24:41,646 --> 00:24:42,347
DETERMINANTS OF HEALTH 

606
00:24:42,347 --> 00:24:43,915
COLLECTION EXPANDING DATA 

607
00:24:43,915 --> 00:24:46,318
PROTOCOLS TO HELP MEASURES FOR 

608
00:24:46,318 --> 00:24:48,053
INDIVIDUAL AS WELL AS STRUCTURAL

609
00:24:48,053 --> 00:24:49,254
FACTORS THAT SHAPE BEHAVIORAL 

610
00:24:49,254 --> 00:24:51,823
AND HEALTH OUTCOMES.

611
00:24:51,823 --> 00:24:53,725
OVERALL, THE SOCIAL DETERMINANTS

612
00:24:53,725 --> 00:24:56,194
OF HEALTH TOOLKIT PROVIDES 

613
00:24:56,194 --> 00:24:56,895
STANDARD DATA COLLECTION 

614
00:24:56,895 --> 00:25:00,599
PROTOCOLS THAT MAKES IT EASIER 

615
00:25:00,599 --> 00:25:02,400
FOR INVESTIGATORS TO SELECT 

616
00:25:02,400 --> 00:25:05,771
MEASURES FOR THE USE OF THEIR 

617
00:25:05,771 --> 00:25:07,539
OWN RESEARCH, SHARING AND 

618
00:25:07,539 --> 00:25:08,640
COMBINE DATA FROM DIFFERENT 

619
00:25:08,640 --> 00:25:08,874
STUDIES.

620
00:25:08,874 --> 00:25:11,943
NEXT SLIDE.

621
00:25:11,943 --> 00:25:14,513
THIS SLIDE HERE SHOWS A SCREEN 

622
00:25:14,513 --> 00:25:16,848
SHOT OF THE SOCIAL DETERMINANTS 

623
00:25:16,848 --> 00:25:18,283
OF HEALTH COLLECTION LOCATED ON 

624
00:25:18,283 --> 00:25:23,522
THE PHENX TOOLKIT WEBSITE.

625
00:25:23,522 --> 00:25:25,590
THE DEMOGRAPHIC AND SOCIAL 

626
00:25:25,590 --> 00:25:27,325
COLLECTION CONSISTENTS OF 18 

627
00:25:27,325 --> 00:25:28,260
PROTOCOLS.

628
00:25:28,260 --> 00:25:29,861
ADDITIONAL THERE ARE TWO 

629
00:25:29,861 --> 00:25:33,665
SPECIALTY COLLECTION PROTOCOLS, 

630
00:25:33,665 --> 00:25:34,966
THE INDIVIDUAL SPECIALTY 

631
00:25:34,966 --> 00:25:37,836
COLLECTION WHICH INCLUDES 23 

632
00:25:37,836 --> 00:25:39,638
PROTOCOLS AND THE STRUCTURAL 

633
00:25:39,638 --> 00:25:42,040
SOCIAL DETERMINES OF HEALTH 

634
00:25:42,040 --> 00:25:43,508
COLLECTIONS WHICH INCLUDES 14 

635
00:25:43,508 --> 00:25:43,775
PROTOCOLS.

636
00:25:43,775 --> 00:25:50,749
NEXT SLIDE.

637
00:25:50,749 --> 00:25:53,819
OVERALL, THE PHENX TOOLKIT IS A 

638
00:25:53,819 --> 00:25:54,953
FREE ONLINE RESOURCE.

639
00:25:54,953 --> 00:25:58,123
IT INCLUDES WOMEN'S HEALTH DATA 

640
00:25:58,123 --> 00:26:00,392
FOR EACH PROTOCOL THE TOOLKIT 

641
00:26:00,392 --> 00:26:04,162
PROVIDES DETAILED INSTRUCTIONS 

642
00:26:04,162 --> 00:26:07,566
AND BIOINFORMATICS SUPPORT.

643
00:26:07,566 --> 00:26:10,735
THERE ARE RECORDED WEBINARS, 

644
00:26:10,735 --> 00:26:12,838
TUTORIALS AND VIDEOS ONLINE.

645
00:26:12,838 --> 00:26:14,773
THIS OPEN ACCESS RESOURCE WILL 

646
00:26:14,773 --> 00:26:17,042
HELP RESEARCHERS MEASURE AND 

647
00:26:17,042 --> 00:26:19,044
BETTER UNDERSTAND UPSTREAM 

648
00:26:19,044 --> 00:26:21,379
FACTORS OVERALL TO SHAPE HEALTH 

649
00:26:21,379 --> 00:26:23,181
BEHAVIORS AND HEALTH OUTCOMES.

650
00:26:23,181 --> 00:26:24,950
PLEASE CONTACT ME FOR ANY 

651
00:26:24,950 --> 00:26:25,450
ADDITIONAL INFORMATION.

652
00:26:25,450 --> 00:26:28,520
THANK YOU.

653
00:26:28,520 --> 00:26:30,388
>> THANK YOU, DR.
MARSHALL.

654
00:26:30,388 --> 00:26:33,258
AND UP NEXT WE WILL HEAR FROM 

655
00:26:33,258 --> 00:26:36,127
DR. DEBORAH DURAN, ALSO AT THE 

656
00:26:36,127 --> 00:26:37,128
NATIONAL INSTITUTE OF MINORITY 

657
00:26:37,128 --> 00:26:39,030
HEALTH AND HEALTH DISPARITIES.

658
00:26:39,030 --> 00:26:46,571
OVER TO YOU.

659
00:26:46,571 --> 00:26:48,406
>> I WOULD LIKE TO PRESENT
TO 

660
00:26:48,406 --> 00:26:50,842
YOU THE SHARED CLOUD PLATFORM.

661
00:26:50,842 --> 00:26:57,716
ON THIS PLATFORM, IT IS DESIGNED

662
00:26:57,716 --> 00:27:03,021
FOR POPULATION HEALTH TYPES OF 

663
00:27:03,021 --> 00:27:03,521
STUDIES.

664
00:27:03,521 --> 00:27:06,291
WE HAVE 300 PLUS DATA SETS 

665
00:27:06,291 --> 00:27:07,959
CENTRALIZED, IF THEY DEAL WITH 

666
00:27:07,959 --> 00:27:10,695
HUMANS INCLUDE FEMALE DATA.

667
00:27:10,695 --> 00:27:13,131
IT ALSO INCLUDES ALL THE SOCIAL 

668
00:27:13,131 --> 00:27:15,033
SCIENCE POPULATION SCIENCE TYPES

669
00:27:15,033 --> 00:27:15,500
OF DATA.

670
00:27:15,500 --> 00:27:17,369
AND WE HAVE DEVELOPED THE 

671
00:27:17,369 --> 00:27:19,938
PLATFORM SO THAT IT CAN MERGE 

672
00:27:19,938 --> 00:27:22,173
WITH OTHER BIOMEDICAL PLATFORMS 

673
00:27:22,173 --> 00:27:30,148
SO THAT YOU CAN DO THINGS LIKE 

674
00:27:30,148 --> 00:27:31,549
EPIGENETIC STUDIES.

675
00:27:31,549 --> 00:27:33,118
IN THIS CLOUD WE TEACH 

676
00:27:33,118 --> 00:27:35,387
ARTIFICIAL INTELLIGENCE, THE USE

677
00:27:35,387 --> 00:27:36,554
OF ARTIFICIAL INTELLIGENCE 

678
00:27:36,554 --> 00:27:37,689
RESEARCH SO WE CAN HAVE A 

679
00:27:37,689 --> 00:27:39,958
REDUCTION OF ERRORS SO THAT WE 

680
00:27:39,958 --> 00:27:42,961
CAN REDUCED THE BIASES AGAINST 

681
00:27:42,961 --> 00:27:51,403
WOMEN AND OFTENTIMES OTHER 

682
00:27:51,403 --> 00:27:52,971
MARGINALIZED OR UNREPRESENTED 

683
00:27:52,971 --> 00:27:55,540
POPULATIONS IN THE DATA 

684
00:27:55,540 --> 00:27:55,941
SCIENCES.

685
00:27:55,941 --> 00:28:02,447
WE DO A SERIES OF WEBINARS CALL 

686
00:28:02,447 --> 00:28:03,782
THINK-A THONS.

687
00:28:03,782 --> 00:28:06,618
WE UPSCALE NOVICE USERS IN DATA 

688
00:28:06,618 --> 00:28:06,851
SCIENCE.

689
00:28:06,851 --> 00:28:09,187
WE HELP THEM LEARN HOW TO USE 

690
00:28:09,187 --> 00:28:11,189
CLOUD COMPUTING SKILLS TO HAVE 

691
00:28:11,189 --> 00:28:13,558
BIGGER DATA SETS IN CONDUCTING 

692
00:28:13,558 --> 00:28:16,428
THEIR RESEARCH TO HAVE MORE 

693
00:28:16,428 --> 00:28:20,332
INSIGHTS INTO WHATEVER THEY ARE 

694
00:28:20,332 --> 00:28:22,767
INVESTIGATING.

695
00:28:22,767 --> 00:28:24,936
THE OTHER PIECE THAT WE TRY TO 

696
00:28:24,936 --> 00:28:27,706
DO WITH THE SCHARE PLATFORM IS 

697
00:28:27,706 --> 00:28:29,474
THAT WE UNDERSTAND THAT THERE 

698
00:28:29,474 --> 00:28:32,644
ARE COMMUNITY COLLEGES AND 

699
00:28:32,644 --> 00:28:33,912
LOW-RESOURCE INSTITUTIONS AND 

700
00:28:33,912 --> 00:28:35,981
ORGANIZATIONS THAT CANNOT AFFORD

701
00:28:35,981 --> 00:28:37,382
A CLOUD.

702
00:28:37,382 --> 00:28:41,619
SO WE OFFER THIS PLATFORM FOR 

703
00:28:41,619 --> 00:28:45,056
CLASSROOM USE, AS DATA CENTERS, 

704
00:28:45,056 --> 00:28:47,559
THESE INSTITUTIONS IN ORDER TO 

705
00:28:47,559 --> 00:28:53,198
BE ABLE TO FOSTER DATA 

706
00:28:53,198 --> 00:28:55,133
SCIENTISTS IN INSTITUTIONS THAT 

707
00:28:55,133 --> 00:28:56,334
CAN'T HAVE THESE PROGRAMS 

708
00:28:56,334 --> 00:28:57,402
THEMSELVES BECAUSE THEY DON'T 

709
00:28:57,402 --> 00:29:00,005
HAVE ENOUGH FUNDS.

710
00:29:00,005 --> 00:29:05,276
IN ORDER TO DO THIS, WE ALSO 

711
00:29:05,276 --> 00:29:07,278
OFFER CUT-AND-PASTE CODE ON OUR 

712
00:29:07,278 --> 00:29:10,815
PLATFORM IS CALLED A NOTEBOOK.

713
00:29:10,815 --> 00:29:12,784
IN THAT CUT-AND-PASTE FORM THEY 

714
00:29:12,784 --> 00:29:14,386
CAN USE PYTHON.

715
00:29:14,386 --> 00:29:15,720
THEY CAN USE VISUALIZATION TOOLS

716
00:29:15,720 --> 00:29:20,658
AND ALL THEY HAVE TO DO IS CUT 

717
00:29:20,658 --> 00:29:22,260
AND PASTE TO START THEIR JOURNEY

718
00:29:22,260 --> 00:29:24,329
INTO DATA SCIENCE.

719
00:29:24,329 --> 00:29:25,997
AND THE LAST THING THAT WE DO IS

720
00:29:25,997 --> 00:29:29,434
WE HAVE A REPOSITORY TO FULFILL 

721
00:29:29,434 --> 00:29:31,936
THE DATA MANAGEMENT AND SHARING 

722
00:29:31,936 --> 00:29:33,371
REQUIREMENTS AT NIH.

723
00:29:33,371 --> 00:29:38,243
AND IN THIS REPOSITORY, WE 

724
00:29:38,243 --> 00:29:39,511
ACTUALLY REQUIRE EVERY PROJECT 

725
00:29:39,511 --> 00:29:43,081
THAT IS SUBMITTED TO ALIGN WITH 

726
00:29:43,081 --> 00:29:46,317
A CORE SET OF DATA ELEMENTS.

727
00:29:46,317 --> 00:29:47,619
IT DOESN'T MEAN YOU HAVE TO USE 

728
00:29:47,619 --> 00:29:48,386
THEM EXACTLY.

729
00:29:48,386 --> 00:29:51,189
IT MEANS THAT WE CAN ALSO MAP TO

730
00:29:51,189 --> 00:29:51,423
THEM.

731
00:29:51,423 --> 00:29:55,160
WHAT THIS DOES IS IT ALLOWS 

732
00:29:55,160 --> 00:29:58,963
THERE TO BE MORE DATA 

733
00:29:58,963 --> 00:29:59,631
INTEROPERABILITY ACROSS STUDIES 

734
00:29:59,631 --> 00:30:02,233
WHEN THEY ARE LOOKING AT THE 

735
00:30:02,233 --> 00:30:03,101
SAME TYPES OF COMMON DATA 

736
00:30:03,101 --> 00:30:05,336
ELEMENTS.

737
00:30:05,336 --> 00:30:10,742
IN THE REPOSITORY WE HAVE THIS 

738
00:30:10,742 --> 00:30:12,343
ABILITY TO JUST POST OR YOU CAN 

739
00:30:12,343 --> 00:30:20,185
USE IT AS AN ONGOING DATA 

740
00:30:20,185 --> 00:30:21,419
CENTER.

741
00:30:21,419 --> 00:30:21,619
NEXT.

742
00:30:21,619 --> 00:30:24,656
IT IS A REPOSITORY.

743
00:30:24,656 --> 00:30:29,294
WE DO HAVE PRIMARILY TABULAR 

744
00:30:29,294 --> 00:30:30,028
DATA.

745
00:30:30,028 --> 00:30:31,796
YES, WOMEN SEX AND PLACE BASED 

746
00:30:31,796 --> 00:30:32,831
FACTORS ARE INCLUDED.

747
00:30:32,831 --> 00:30:35,500
THERE IS A MINIMAL COST.

748
00:30:35,500 --> 00:30:36,768
WE ACTUALLY DEVELOPED THE 

749
00:30:36,768 --> 00:30:39,237
PLATFORM SO IT IS ONE OF THE 

750
00:30:39,237 --> 00:30:41,039
LOWEST COST USE BECAUSE WE HOST 

751
00:30:41,039 --> 00:30:43,908
MOST OF THE DATA OURSELVES AND 

752
00:30:43,908 --> 00:30:47,178
WE'VE SET UP USER-FRIENDLY 

753
00:30:47,178 --> 00:30:48,379
COST-EFFECTIVE TOOLS.

754
00:30:48,379 --> 00:30:49,547
THERE'S NO RESTRICTION.

755
00:30:49,547 --> 00:30:52,350
IT IS OPEN ACCESS FOR SOME PARTS

756
00:30:52,350 --> 00:30:54,252
OF THE DATA.

757
00:30:54,252 --> 00:30:56,488
SOME DATA HAVE PII SO THERE HAS 

758
00:30:56,488 --> 00:30:59,257
TO BE DATA USE AGREEMENTS AND WE

759
00:30:59,257 --> 00:31:02,393
DO TRAINING, NOT ONLY THROUGH 

760
00:31:02,393 --> 00:31:05,830
OUR THINK-A-THONS.

761
00:31:05,830 --> 00:31:07,599
BUT WE HAVE OFFICE HOURS TO USE 

762
00:31:07,599 --> 00:31:08,900
THE PLATFORM.

763
00:31:08,900 --> 00:31:10,835
THERE'S THE LINKS ON THE SLIDE 

764
00:31:10,835 --> 00:31:13,037
AS WELL AS ON THE OTHER SLIDE 

765
00:31:13,037 --> 00:31:15,073
FOR THE SHARED REPOSITORY 

766
00:31:15,073 --> 00:31:18,042
ITSELF.

767
00:31:18,042 --> 00:31:19,577
PLEASE CONTACT ME IF YOU HAVE 

768
00:31:19,577 --> 00:31:20,712
ANY QUESTIONS OR WOULD LIKE TO 

769
00:31:20,712 --> 00:31:26,151
USE THE REPOSITORY.

770
00:31:26,151 --> 00:31:27,886
>> THANK YOU DR. DURAN.

771
00:31:27,886 --> 00:31:30,321
AND THANK YOU TO ALL OF OUR 

772
00:31:30,321 --> 00:31:33,925
PRESENTERS FROM ACROSS NIH WHO 

773
00:31:33,925 --> 00:31:37,195
HAVE GIVEN A VERY RAPID OVERVIEW

774
00:31:37,195 --> 00:31:39,197
OF THESE RESOURCES AND 

775
00:31:39,197 --> 00:31:39,531
REPOSITORIES.

776
00:31:39,531 --> 00:31:42,734
WE HAVE PREPARED A DIGITAL 

777
00:31:42,734 --> 00:31:46,070
RESOURCE THAT INCLUDES 

778
00:31:46,070 --> 00:31:48,473
INFORMATION ABOUT THESE VARIOUS 

779
00:31:48,473 --> 00:31:51,242
NIH DATA RESOURCES, INCLUDING 

780
00:31:51,242 --> 00:31:51,876
ADDITIONAL RESOURCES SHOWN HERE 

781
00:31:51,876 --> 00:31:54,512
ON THIS SLIDE.

782
00:31:54,512 --> 00:31:56,080
FOR THOSE OF YOU VIEWING ON THE 

783
00:31:56,080 --> 00:32:01,786
TEAMS WEBINAR, YOU CAN ACCESS 

784
00:32:01,786 --> 00:32:03,021
THAT DIGITAL RESOURCE USING THE 

785
00:32:03,021 --> 00:32:04,455
LINK THAT WAS POSTED.

786
00:32:04,455 --> 00:32:06,991
FOR THOSE OF YOU WATCHING VIA 

787
00:32:06,991 --> 00:32:09,194
NIH VIDEOCAST, YOU CAN ACCESS 

788
00:32:09,194 --> 00:32:12,964
THE RESOURCE FROM THE ORWH 

789
00:32:12,964 --> 00:32:14,899
WEBPAGE ON THE TODAY'S EVENT.

790
00:32:14,899 --> 00:32:19,938
SO WE ENCOURAGE YOU TO PLEASE 

791
00:32:19,938 --> 00:32:25,410
TAKE A LOOK AND FAMILIARIZE 

792
00:32:25,410 --> 00:32:26,611
YOURSELF WITH ANY RESOURCES NEW 

793
00:32:26,611 --> 00:32:28,546
TO YOU AND FEEL FREE TO REACH 

794
00:32:28,546 --> 00:32:32,050
OUT WITH ANY QUESTIONS.

795
00:32:32,050 --> 00:32:37,088
WE ALSO WANTED TO ENCOURAGE 

796
00:32:37,088 --> 00:32:39,023
FOLKS TO CONTINUE SENDING 

797
00:32:39,023 --> 00:32:42,193
QUESTIONS THROUGH THE Q&A
BOX ON

798
00:32:42,193 --> 00:32:44,262
THE TEAMS WEBINAR OR USING THE 

799
00:32:44,262 --> 00:32:46,764
LIVE FEEDBACK OPTION FOR THOSE 

800
00:32:46,764 --> 00:32:51,035
OF YOU ON NIH VIDEOCAST.

801
00:32:51,035 --> 00:32:54,138
AND WE WILL GO AHEAD AND TAKE A 

802
00:32:54,138 --> 00:32:57,208
SHORT BREAK BEFORE RETURNING 

803
00:32:57,208 --> 00:32:59,043
WITH OUR CAPSTONE PRESENTATION, 

804
00:32:59,043 --> 00:33:00,845
WHICH WILL BEGIN AT 1:00 P.M. 

805
00:33:00,845 --> 00:33:02,780
EASTERN TIME.

806
00:33:02,780 --> 00:33:05,049
SO WE WILL LOOK FORWARD TO 

807
00:33:05,049 --> 00:33:06,784
SEEING YOU IN JUST A FEW MINUTES

808
00:33:06,784 --> 00:33:07,619
FOR OUR CAPSTONE TALK.

809
00:33:07,619 --> 00:33:17,795
THANK YOU.

810
00:33:18,109 --> 00:33:20,878
I HOPE YOU WERE ABLE TO HAVE A 

811
00:33:20,878 --> 00:33:22,747
SHORT STRETCH OR SNACK, IF YOU 

812
00:33:22,747 --> 00:33:24,982
NEEDED EITHER OF THOSE THINGS.

813
00:33:24,982 --> 00:33:29,587
I'LL NOW TURN THINGS OVER TO DR.

814
00:33:29,587 --> 00:33:31,055
LAUREN FORDYCE WHO WILL 

815
00:33:31,055 --> 00:33:32,490
INTRODUCE OUR CAPSTONE SPEAKER.

816
00:33:32,490 --> 00:33:35,226
OVER TO YOU, LAUREN.

817
00:33:35,226 --> 00:33:36,560
>> THANKS.

818
00:33:36,560 --> 00:33:38,229
GOOD AFTERNOON, ALL.

819
00:33:38,229 --> 00:33:40,998
MY NAME IS LAUREN FORDYCE.

820
00:33:40,998 --> 00:33:42,266
I'M A HEALTH SCIENCE 

821
00:33:42,266 --> 00:33:44,702
ADMINISTRATOR IN THE OFFICE OF 

822
00:33:44,702 --> 00:33:46,237
BEHAVIORAL AND SOCIAL SCIENCE 

823
00:33:46,237 --> 00:33:46,570
RESEARCH.

824
00:33:46,570 --> 00:33:48,339
I'M VERY PLEASED TO INTRODUCE 

825
00:33:48,339 --> 00:33:51,375
OUR CAPSTONE SPEAKER DR. RAQUEL 

826
00:33:51,375 --> 00:33:51,609
HILL.

827
00:33:51,609 --> 00:33:55,312
DR. HILL IS PROFESSOR AND CHAIR 

828
00:33:55,312 --> 00:33:56,480
OF THE COMPUTER AND INFORMATION 

829
00:33:56,480 --> 00:33:57,548
SCIENCES DEPARTMENT AT SPELMAN 

830
00:33:57,548 --> 00:33:57,848
COLLEGE.

831
00:33:57,848 --> 00:34:03,154
PRIOR TO JOINING SPELMAN, DR. 

832
00:34:03,154 --> 00:34:06,490
HILL WAS A DIRECTOR OF COMPUTER 

833
00:34:06,490 --> 00:34:10,094
SCIENCE, CYBERSECURITY, IN THE 

834
00:34:10,094 --> 00:34:14,999
SCHOOL OF INFORMATICS AT INDIANA

835
00:34:14,999 --> 00:34:16,534
UNIVERSITY IN BLOOMINGTON, 

836
00:34:16,534 --> 00:34:16,767
INDIANA.

837
00:34:16,767 --> 00:34:20,371
SHE HAS BEEN AWARDED MILLIONS OF

838
00:34:20,371 --> 00:34:23,007
DOLLARS IN COMMUNE SCIENCE 

839
00:34:23,007 --> 00:34:24,842
EDUCATION FROM VARIOUS AGENCIES 

840
00:34:24,842 --> 00:34:27,178
INCLUDING THE NATIONAL SCIENCE 

841
00:34:27,178 --> 00:34:28,612
FOUNDATION, HEWLETT, REBOOT 

842
00:34:28,612 --> 00:34:30,448
REPRESENTATION, TECH COALITION, 

843
00:34:30,448 --> 00:34:32,116
GOOGLE FOUNDATION AND OTHERS.

844
00:34:32,116 --> 00:34:33,918
SHE IS SPELMAN'S PRINCIPLE 

845
00:34:33,918 --> 00:34:37,555
INVESTIGATOR FOR THE NSF 

846
00:34:37,555 --> 00:34:38,889
DISTRIBUTED CONFIDENTIAL 

847
00:34:38,889 --> 00:34:41,859
COMPUTING CENTER, CYBERPOLICY, 

848
00:34:41,859 --> 00:34:44,995
SIB SECURITY CLINIC AND COMPUTER

849
00:34:44,995 --> 00:34:47,631
SCIENCE ACTIVITIES.

850
00:34:47,631 --> 00:34:49,700
SHE HAS TRUST AND SECURITY IN 

851
00:34:49,700 --> 00:34:51,335
COMPETING ENVIRONMENTS AND DATA 

852
00:34:51,335 --> 00:34:51,602
PRIVACY.

853
00:34:51,602 --> 00:34:54,738
SHE EARNED HER BS AND MS DEGREES

854
00:34:54,738 --> 00:34:57,575
IN COMPUTER SCIENCE FROM THE 

855
00:34:57,575 --> 00:34:59,109
GEORGIA INSTITUTE OF TECHNOLOGY 

856
00:34:59,109 --> 00:35:00,578
AND PH.D. IN COMPUTER SCIENCE 

857
00:35:00,578 --> 00:35:10,988
FROM HARVARD UNIVERSITY.

858
00:35:34,612 --> 00:35:35,679
>> HELLO, EVERYONE.

859
00:35:35,679 --> 00:35:37,047
I APOLOGIZE FOR THE DELAY.

860
00:35:37,047 --> 00:35:40,985
I ACTUALLY HAD A GLITCH IN THE 

861
00:35:40,985 --> 00:35:44,388
SOUND.

862
00:35:44,388 --> 00:35:48,726
THANK YOU SO MUCH, LAURA, FOR 

863
00:35:48,726 --> 00:35:51,695
THAT INTRODUCTION.

864
00:35:51,695 --> 00:35:58,802
I ACTUAL LY WANT TO THANK DR. 

865
00:35:58,802 --> 00:35:59,069
BARR.

866
00:35:59,069 --> 00:36:00,571
IT IS AN HONOR TO BE THE 

867
00:36:00,571 --> 00:36:02,006
CAPSTONE SPEAKER TODAY.

868
00:36:02,006 --> 00:36:04,975
WE CAN START WITH THE FIRST 

869
00:36:04,975 --> 00:36:09,246
SLIDE, PLEASE.

870
00:36:09,246 --> 00:36:09,446
OKAY.

871
00:36:09,446 --> 00:36:11,916
I LIKE STARTING WITH MY TITLE 

872
00:36:11,916 --> 00:36:13,584
BECAUSE I LIKE TO EXPLAIN WHAT 

873
00:36:13,584 --> 00:36:15,152
I'M THINKING ABOUT, WHEN I'M 

874
00:36:15,152 --> 00:36:23,193
THINKING ABOUT THE TITLE.

875
00:36:23,193 --> 00:36:28,165
I WANTED TO GO ADVANCING DATA 

876
00:36:28,165 --> 00:36:28,666
INNOVATIONS FOR HEALTH 

877
00:36:28,666 --> 00:36:29,300
IMPROVEMENTS: POSSIBILITIES AND 

878
00:36:29,300 --> 00:36:29,967
PITFALLS AND I WANT TO TALK A 

879
00:36:29,967 --> 00:36:33,170
LITTLE BIT ABOUT MY BACKGROUND 

880
00:36:33,170 --> 00:36:36,674
WITH DATA.

881
00:36:36,674 --> 00:36:39,009
I STARTED WORKING WITH DATA 

882
00:36:39,009 --> 00:36:42,079
WORKING WITH THE KINSE YKS 

883
00:36:42,079 --> 00:36:44,081
INSTITUTE ON HOW TO SECURE THEIR

884
00:36:44,081 --> 00:36:46,483
DATA, WE WERE TALKING ABOUT HOW 

885
00:36:46,483 --> 00:36:49,954
TO ENSURE CONFIDENTIALITY OR THE

886
00:36:49,954 --> 00:36:52,556
PROTECTION THAT ONLY AUTHORIZED 

887
00:36:52,556 --> 00:36:54,024
INDIVIDUALS CAN ACCESS DATA, BUT

888
00:36:54,024 --> 00:36:55,593
WE WERE ALSO TALKING ABOUT WHAT 

889
00:36:55,593 --> 00:37:01,231
CAN YOU LEARN FROM THE DATA THAT

890
00:37:01,231 --> 00:37:04,301
IS NOT PRESENT IN THE DATA.

891
00:37:04,301 --> 00:37:05,302
DATA PRIVACY BECAME A BIG 

892
00:37:05,302 --> 00:37:07,071
CONCERN AND ISSUE AS I WAS 

893
00:37:07,071 --> 00:37:09,273
LOOKING AT THIS BIOMEDICAL DATA.

894
00:37:09,273 --> 00:37:11,408
SO WHAT WE KNOW ABOUT DATA IS 

895
00:37:11,408 --> 00:37:12,977
THE MORE FEATURES YOU HAVE, THE 

896
00:37:12,977 --> 00:37:16,380
MORE LIKELY IT IS THAT YOU ARE 

897
00:37:16,380 --> 00:37:18,415
UNIQUE, YOU HAVE A UNIQUE 

898
00:37:18,415 --> 00:37:24,822
PROFILE WITHIN THOSE SET OF 

899
00:37:24,822 --> 00:37:25,089
FEATURES.

900
00:37:25,089 --> 00:37:26,657
AND WE UNDERSTAND ANYTHING THAT 

901
00:37:26,657 --> 00:37:30,094
COULD MAKE YOU UNIQUE, COULD BE 

902
00:37:30,094 --> 00:37:33,163
LINKED TO EXTERNAL DATA TO 

903
00:37:33,163 --> 00:37:35,065
REIDENTIFY YOU OR PROVIDE 

904
00:37:35,065 --> 00:37:37,001
IDENTIFYING FEATURES EVEN IF 

905
00:37:37,001 --> 00:37:38,402
THESE FEATURES ARE NOT IN THE 

906
00:37:38,402 --> 00:37:38,902
DATA SET.

907
00:37:38,902 --> 00:37:41,639
AS WE LOOK AT DATA INNOVATIONS 

908
00:37:41,639 --> 00:37:43,841
AND POSSIBILITIES, WHAT DOES 

909
00:37:43,841 --> 00:37:45,075
DATA ALLOW US TO DO?

910
00:37:45,075 --> 00:37:47,611
WE ALSO HAVE TO LOOK AT 

911
00:37:47,611 --> 00:37:48,846
CHALLENGES LIKE NOT HAVING 

912
00:37:48,846 --> 00:37:52,549
ENOUGH DATA IN ORDER TO DO THE 

913
00:37:52,549 --> 00:37:52,816
ANALYSIS.

914
00:37:52,816 --> 00:37:55,719
OR THE DATA LEAKING INFORMATION 

915
00:37:55,719 --> 00:37:57,755
THAT SHOULD NOT BE SHARED, AND 

916
00:37:57,755 --> 00:38:00,391
THAT IS THE DATA PRIVACY PIECE, 

917
00:38:00,391 --> 00:38:03,260
BUT ALSO DOING COMPUTATION IN A 

918
00:38:03,260 --> 00:38:03,994
CONFIDENTIAL MANNER.

919
00:38:03,994 --> 00:38:11,535
NEXT SLIDE, PLEASE.

920
00:38:11,535 --> 00:38:14,905
SO AS I WAS THINKING ABOUT THE 

921
00:38:14,905 --> 00:38:16,740
DATA INNOVATION, ONE OF THE 

922
00:38:16,740 --> 00:38:20,644
CHALLENGES THAT I HAD SPOKEN 

923
00:38:20,644 --> 00:38:24,081
WITH, WITH DR. BARR ARE HEALTH 

924
00:38:24,081 --> 00:38:24,381
DISPARITIES.

925
00:38:24,381 --> 00:38:25,849
AND THE FIRST THING I THOUGHT 

926
00:38:25,849 --> 00:38:29,953
ABOUT IS, LIKE, HOW DO I 

927
00:38:29,953 --> 00:38:30,521
UNDERSTAND, YOU KNOW, WHERE 

928
00:38:30,521 --> 00:38:32,623
DISPARITIES ARE HAPPENING, WHO 

929
00:38:32,623 --> 00:38:36,026
IS IMPACTED BY THE DISPARITIES?

930
00:38:36,026 --> 00:38:38,796
AND SO I KNEW FROM MY RESEARCH 

931
00:38:38,796 --> 00:38:40,964
ABOUT WHAT MY ZIP CODE CAN TELL 

932
00:38:40,964 --> 00:38:45,469
ABOUT ME AND OTHER THINGS LIKE 

933
00:38:45,469 --> 00:38:46,770
LINKING ME TO IDENTIFYING 

934
00:38:46,770 --> 00:38:51,075
INFORMATION, BUT I WANTED TO 

935
00:38:51,075 --> 00:38:52,509
UNDERSTAND WHAT MY ZIP CODE SAID

936
00:38:52,509 --> 00:38:55,345
ABOUT ME AS IT RELATES TO MY 

937
00:38:55,345 --> 00:38:55,579
HEALTH.

938
00:38:55,579 --> 00:38:58,348
SO I ACTUALLY CAME ACROSS SOME 

939
00:38:58,348 --> 00:39:01,318
RESEARCH THAT I WAS DOING THIS 

940
00:39:01,318 --> 00:39:07,057
WEBSITE THAT IS PROVIDED BY THE 

941
00:39:07,057 --> 00:39:08,392
ROBERT WOOD JOHNSON FOUNDATION 

942
00:39:08,392 --> 00:39:10,794
AND IT GAVE MY LIFE EXPECTANCY 

943
00:39:10,794 --> 00:39:12,229
BASED ON MY ZIP CODE.

944
00:39:12,229 --> 00:39:14,264
SO I BEGAN THERE AND I WANTED TO

945
00:39:14,264 --> 00:39:16,567
TAKE A LOOK AT, YOU KNOW, GIVEN 

946
00:39:16,567 --> 00:39:18,836
WHERE I'VE LIVED THROUGHOUT, YOU

947
00:39:18,836 --> 00:39:20,971
KNOW, MY LIFE AND MY CAREER, 

948
00:39:20,971 --> 00:39:24,475
LIKE, WHAT WAS MY LIFE 

949
00:39:24,475 --> 00:39:25,275
EXPECTANCY?

950
00:39:25,275 --> 00:39:27,144
AND, YOU KNOW, HOW DID IT CHANGE

951
00:39:27,144 --> 00:39:28,612
BASED ON, YOU KNOW, MY ZIP CODE?

952
00:39:28,612 --> 00:39:30,547
AND SO WE'RE GOING TO UNPACK 

953
00:39:30,547 --> 00:39:31,949
THAT A LITTLE BIT.

954
00:39:31,949 --> 00:39:37,821
I WOULD LIKE TO START BY CON

955
00:39:37,821 --> 00:39:40,691
CONTEXTUALIZING WHAT I SEE AS 

956
00:39:40,691 --> 00:39:42,459
THE PROBLEM AND I USE MYSELF AS 

957
00:39:42,459 --> 00:39:46,296
THE ACTUAL DATA SOURCE.

958
00:39:46,296 --> 00:39:48,499
IF YOU TAKE A LOOK AT THE GRAPH,

959
00:39:48,499 --> 00:39:50,567
THERE ARE THREE LINES.

960
00:39:50,567 --> 00:39:55,172
THE BLUE LINE IS MY ZIP CODE 

961
00:39:55,172 --> 00:39:56,340
THROUGH ELEMENTARY SCHOOL, HIGH 

962
00:39:56,340 --> 00:39:58,108
SCHOOL, UNDERGRAD.

963
00:39:58,108 --> 00:40:00,310
MY FIRST JOB, GRADUATE SCHOOL, 

964
00:40:00,310 --> 00:40:03,013
POST DOC AND MY FIRST JOB AS AN 

965
00:40:03,013 --> 00:40:03,914
ASSISTANT PROFESSOR.

966
00:40:03,914 --> 00:40:09,086
YOU DON'T NEED TO KNOW THE ZIP 

967
00:40:09,086 --> 00:40:09,553
CODES.

968
00:40:09,553 --> 00:40:11,355
BUT THAT IS THE CONTEXT OF WHAT 

969
00:40:11,355 --> 00:40:15,726
I WAS DOING AT THAT TIME.

970
00:40:15,726 --> 00:40:17,594
THE ORANGE LINE IS THE AVERAGE 

971
00:40:17,594 --> 00:40:19,797
AND THE GREEN LINE IS THE LIFE 

972
00:40:19,797 --> 00:40:23,133
EXPECTANCY OF THE STATES I WAS 

973
00:40:23,133 --> 00:40:25,302
LIVING IN AT THE TIME.

974
00:40:25,302 --> 00:40:28,939
ALL OF THIS IS IN CHRONOLOGICAL 

975
00:40:28,939 --> 00:40:31,308
ORDER FROM ELEMENTARY SCHOOL TO 

976
00:40:31,308 --> 00:40:32,643
ASSISTANT PROFESSOR.

977
00:40:32,643 --> 00:40:34,311
I STARTED OUT IN ELEMENTARY 

978
00:40:34,311 --> 00:40:34,545
SCHOOL.

979
00:40:34,545 --> 00:40:36,847
I'M FROM A RURAL TOWN AND THAT 

980
00:40:36,847 --> 00:40:38,015
GIVES YOU SOME IDEA ABOUT 

981
00:40:38,015 --> 00:40:39,750
POSSIBLY ABOUT WHAT IS GOING ON 

982
00:40:39,750 --> 00:40:41,351
IN THE RURAL TOWN WITH REGARDS 

983
00:40:41,351 --> 00:40:45,722
TO ACCESS TO HEALTH CARE, ACCESS

984
00:40:45,722 --> 00:40:49,726
TO JOBS, EDUCATION, AND I HAVE A

985
00:40:49,726 --> 00:40:54,832
FEW OF THOSE NUMBERS ON THE 

986
00:40:54,832 --> 00:40:56,266
LEFT-HAND SIDE OF THE SCREEN 

987
00:40:56,266 --> 00:40:58,602
HOPEFULLY IT'S MIRRORS SO MY 

988
00:40:58,602 --> 00:40:59,970
LEFT IS YOUR LEFT AND MY RIGHT 

989
00:40:59,970 --> 00:41:00,838
IS YOUR RIGHT.

990
00:41:00,838 --> 00:41:02,372
BUT WE'LL SEE.

991
00:41:02,372 --> 00:41:03,607
YOU WILL UNDERSTAND WITH WORDS 

992
00:41:03,607 --> 00:41:06,343
AND WHAT THE SLIDE IS TELLING 

993
00:41:06,343 --> 00:41:06,510
YOU.

994
00:41:06,510 --> 00:41:08,879
SO MY LIFE EXPECTANCY IN MY 

995
00:41:08,879 --> 00:41:11,748
HOMETOWN, I THINK WAS ABOUT 71 

996
00:41:11,748 --> 00:41:11,949
YEARS.

997
00:41:11,949 --> 00:41:14,985
AND SO I ACTUALLY CHANGED HIGH 

998
00:41:14,985 --> 00:41:16,520
SCHOOLS AND WAS IN A DIFFERENT 

999
00:41:16,520 --> 00:41:18,889
ZIP CODE, SO IT WENT UP TO ABOUT

1000
00:41:18,889 --> 00:41:19,756
73 YEARS.

1001
00:41:19,756 --> 00:41:24,962
BUT AS YOU SEE, AS WE PROGRESS 

1002
00:41:24,962 --> 00:41:29,433
ALONG TO THE RIGHT, YOU KNOW, AS

1003
00:41:29,433 --> 00:41:30,601
I ENTERED GRADUATE SCHOOL THERE 

1004
00:41:30,601 --> 00:41:32,603
WAS THE PEAK.

1005
00:41:32,603 --> 00:41:35,205
AND BECAUSE, YOU KNOW, I WENT TO

1006
00:41:35,205 --> 00:41:37,541
HARVARD FOR MY PH.D., I WAS IN 

1007
00:41:37,541 --> 00:41:38,775
CAMBRIDGE, MASSACHUSETTS.

1008
00:41:38,775 --> 00:41:40,978
I THINK THE LIFE EXPECTANCY IN 

1009
00:41:40,978 --> 00:41:43,146
THE ZIP CODE WAS ABOUT 81.

1010
00:41:43,146 --> 00:41:44,848
WHAT WE KNOW ABOUT MASSACHUSETTS

1011
00:41:44,848 --> 00:41:49,086
IS IT IS ABOVE THE AVERAGE AND, 

1012
00:41:49,086 --> 00:41:51,188
YOU KNOW, THAT WAS THE PEAK.

1013
00:41:51,188 --> 00:41:56,026
AND SO AS WE LOOK AT SOME OF THE

1014
00:41:56,026 --> 00:41:58,195
NUMBERS TO -- THAT I HAVE HERE 

1015
00:41:58,195 --> 00:42:00,497
ABOUT MY HOMETOWN IS THAT -- AND

1016
00:42:00,497 --> 00:42:03,500
I ACTUALLY MATCHED THE DATES 

1017
00:42:03,500 --> 00:42:07,638
WITH THE DATE THAT THE ROBERT 

1018
00:42:07,638 --> 00:42:09,339
WOOD JOHNSON INFORMATION IS 

1019
00:42:09,339 --> 00:42:16,580
PROVIDED AND IT WAS BASED ON 

1020
00:42:16,580 --> 00:42:19,750
2022.

1021
00:42:19,750 --> 00:42:22,753
UNEMPLOYMENT IN MY HOMETOWN WAS 

1022
00:42:22,753 --> 00:42:26,723
5.2%, ABOVE THE NATIONAL AVERAGE

1023
00:42:26,723 --> 00:42:32,396
AND MY GRAD SCHOOL ZIP CODE.

1024
00:42:32,396 --> 00:42:35,032
THE HOUSEHOLD WAS 15%.

1025
00:42:35,032 --> 00:42:39,303
FOR MY GRAD SCHOOL IT WAS 12.1.

1026
00:42:39,303 --> 00:42:42,773
GRADUATION RATE WAS 84.3%, IN 

1027
00:42:42,773 --> 00:42:48,312
THE U.S. IT WAS 87% IN MY GRAD 

1028
00:42:48,312 --> 00:42:51,081
SCHOOL SIP CODE IT WAS 90.1%.

1029
00:42:51,081 --> 00:42:54,618
I HAD THOSE NUMBERS FROM AN 

1030
00:42:54,618 --> 00:42:55,886
EARLIER PRESENTATION FROM 2014 

1031
00:42:55,886 --> 00:42:58,055
WHEN THOSE NUMBERS WERE 

1032
00:42:58,055 --> 00:43:01,525
DRASTICALLY LOWER, SIGNIFICANTLY

1033
00:43:01,525 --> 00:43:01,725
LOWER.

1034
00:43:01,725 --> 00:43:05,963
LIKE THE GRADUATION RATE WAS 

1035
00:43:05,963 --> 00:43:06,129
55%.

1036
00:43:06,129 --> 00:43:07,898
IT KIND OF TELLS YOU A LITTLE 

1037
00:43:07,898 --> 00:43:09,733
BIT ABOUT MY HIGH SCHOOL.

1038
00:43:09,733 --> 00:43:17,507
AND AS I WAS LOOKING AT THE 

1039
00:43:17,507 --> 00:43:19,409
RESEARCH ON HEALTH DISPARITIES 

1040
00:43:19,409 --> 00:43:21,812
AND HOW MEDICAL RESEARCHERS HAVE

1041
00:43:21,812 --> 00:43:23,146
BEEN TALKING ABOUT THAT, THEY 

1042
00:43:23,146 --> 00:43:24,681
TALK ABOUT THE SOCIAL 

1043
00:43:24,681 --> 00:43:26,216
DETERMINANTS OF HEALTH, HOW 

1044
00:43:26,216 --> 00:43:30,253
BASICALLY THE ZIP CODE AND THE 

1045
00:43:30,253 --> 00:43:32,689
SOCIAL DETERMINANTS OF HEALTH 

1046
00:43:32,689 --> 00:43:33,390
DETERMINE THINGS LIKE LIFE 

1047
00:43:33,390 --> 00:43:38,628
EXPECTANCY.

1048
00:43:38,628 --> 00:43:41,231
AND HOW YOUR ZIP CODE IS UP TO 

1049
00:43:41,231 --> 00:43:43,166
6% OF YOUR HEALTH IS DETERMINED 

1050
00:43:43,166 --> 00:43:50,741
SOLELY BY ZIP CODE, WHERE YOU 

1051
00:43:50,741 --> 00:43:50,941
LIVE.

1052
00:43:50,941 --> 00:43:52,809
AND THERE ARE AGENTS IN YOUR 

1053
00:43:52,809 --> 00:43:54,611
ENVIRONMENT THAT IMPACT YOUR 

1054
00:43:54,611 --> 00:43:56,947
HEALTH, YOUR WELL BEING, YOUR 

1055
00:43:56,947 --> 00:43:58,849
LIFESTYLE AND THINGS OF THAT 

1056
00:43:58,849 --> 00:43:59,082
NATURE.

1057
00:43:59,082 --> 00:44:05,989
SO NEXT SLIDE, PLEASE.

1058
00:44:05,989 --> 00:44:08,725
AND SO THE HEALTHY PEOPLE 2020 

1059
00:44:08,725 --> 00:44:12,195
TALKED ABOUT THE SOCIAL 

1060
00:44:12,195 --> 00:44:12,863
DETERMINANTS OF HEALTH AND WHAT 

1061
00:44:12,863 --> 00:44:15,399
THOSE ARE AND WHEN WE LOOK AT 

1062
00:44:15,399 --> 00:44:16,933
IT, IF THE CONDITIONS IN THE 

1063
00:44:16,933 --> 00:44:18,101
ENVIRONMENT IN WHICH PEOPLE ARE 

1064
00:44:18,101 --> 00:44:19,936
BORN, THEY LIVE, THEY WORK, THEY

1065
00:44:19,936 --> 00:44:22,973
PLAY, THEY WORSHIP AND THEY AGE 

1066
00:44:22,973 --> 00:44:27,110
AND THE EFFECT, YOU KNOW, THAT 

1067
00:44:27,110 --> 00:44:28,645
THOSE THINGS HAVE ON YOUR 

1068
00:44:28,645 --> 00:44:28,879
HEALTH.

1069
00:44:28,879 --> 00:44:31,014
AND SO THIS BECOMES IMPORTANT 

1070
00:44:31,014 --> 00:44:34,885
BECAUSE IT'S NOT JUST ABOUT, YOU

1071
00:44:34,885 --> 00:44:38,889
KNOW, THE DATA THAT YOU WE ARE 

1072
00:44:38,889 --> 00:44:39,256
COLLECTING.

1073
00:44:39,256 --> 00:44:40,891
IT IS NOT JUST ABOUT YOUR WEIGHT

1074
00:44:40,891 --> 00:44:42,926
OR YOUR ACTIVITY.

1075
00:44:42,926 --> 00:44:44,895
WHAT ARE THOSE THINGS THAT ARE 

1076
00:44:44,895 --> 00:44:45,228
IMPACTING YOU?

1077
00:44:45,228 --> 00:44:48,065
DO YOU LIVE IN A FOOD DESERT?

1078
00:44:48,065 --> 00:44:50,700
WHERE IS THE NEAREST GROCERY 

1079
00:44:50,700 --> 00:44:51,101
STORE?

1080
00:44:51,101 --> 00:44:54,638
DO YOU HAVE ACCESS TO FRESH 

1081
00:44:54,638 --> 00:44:54,838
FOOD?

1082
00:44:54,838 --> 00:44:56,339
DO YOU HAVE ACCESS TO VIABLE 

1083
00:44:56,339 --> 00:44:58,875
EMPLOYMENT THAT PROVIDES YOU 

1084
00:44:58,875 --> 00:45:01,511
WITH A LIVING WAGE, THAT ENABLES

1085
00:45:01,511 --> 00:45:03,580
YOU TO SUPPORT YOU AND YOUR 

1086
00:45:03,580 --> 00:45:05,315
FAMILY AND THE RESPONSIBILITIES 

1087
00:45:05,315 --> 00:45:06,583
THAT YOU HAVE?

1088
00:45:06,583 --> 00:45:08,985
ALL OF THOSE THINGS IMPACT YOU.

1089
00:45:08,985 --> 00:45:12,389
SO AS WE LOOK AT, YOU KNOW, 

1090
00:45:12,389 --> 00:45:14,224
ADVANCING DATA INNOVATIONS, 

1091
00:45:14,224 --> 00:45:15,659
ESPECIALLY WHEN WE WANT TO TALK 

1092
00:45:15,659 --> 00:45:19,496
ABOUT HOW DO WE ADDRESS HEALTH 

1093
00:45:19,496 --> 00:45:23,333
DISPARITIES, WE CANNOT JUST LOOK

1094
00:45:23,333 --> 00:45:24,835
AT, YOU KNOW, TRADITIONAL THINGS

1095
00:45:24,835 --> 00:45:27,571
LIKE GENETICS AND WHETHER YOU 

1096
00:45:27,571 --> 00:45:32,876
ARE PREDISPOSED FOR A PARTICULAR

1097
00:45:32,876 --> 00:45:34,111
DISORDER, BUT WE HAVE TO LOOK AT

1098
00:45:34,111 --> 00:45:34,878
YOUR ENVIRONMENT.

1099
00:45:34,878 --> 00:45:39,249
SO WE HAVE TO FIND WAYS TO 

1100
00:45:39,249 --> 00:45:42,152
INTEGRATE THIS DATA ALONG WITH 

1101
00:45:42,152 --> 00:45:44,054
OTHER MEDICAL AND 

1102
00:45:44,054 --> 00:45:47,457
MEDICAL-RELATED DATA TO HAVE A 

1103
00:45:47,457 --> 00:45:49,526
BETTER UNDERSTANDING OF HOW YOUR

1104
00:45:49,526 --> 00:45:52,529
ENVIRONMENT IMPACTS YOUR HEALTH 

1105
00:45:52,529 --> 00:45:55,899
AND WHAT POLICIES NEED TO BE PUT

1106
00:45:55,899 --> 00:45:58,201
IN PLACE IN ORDER TO AFFECT 

1107
00:45:58,201 --> 00:46:02,005
CHANGE AND CHANGE THOSE 

1108
00:46:02,005 --> 00:46:04,508
DISPARITY NUMBERS.

1109
00:46:04,508 --> 00:46:06,543
SO WHEN IT CAME TO EDUCATION AND

1110
00:46:06,543 --> 00:46:07,310
HIGH SCHOOL GRADUATION AND SOME 

1111
00:46:07,310 --> 00:46:11,915
OF THE OTHER NUMBERS THAT I 

1112
00:46:11,915 --> 00:46:13,383
MENTIONED IN THE PREVIOUS SLIDE 

1113
00:46:13,383 --> 00:46:18,922
FOR MY HOMETOWN, MY HOMETOWN WAS

1114
00:46:18,922 --> 00:46:20,223
ALWAYS BENEATH THE NATIONAL 

1115
00:46:20,223 --> 00:46:21,191
AVERAGE AND THE AVERAGE FOR SOME

1116
00:46:21,191 --> 00:46:24,494
OF THE OTHER PLACES WHERE I'VE 

1117
00:46:24,494 --> 00:46:25,896
LIVED A SIGNIFICANT AMOUNT OF 

1118
00:46:25,896 --> 00:46:27,364
TIME OF MY LIFE.

1119
00:46:27,364 --> 00:46:27,564
OKAY.

1120
00:46:27,564 --> 00:46:34,070
NEXT SLIDE, PLEASE.

1121
00:46:34,070 --> 00:46:36,907
AND SO AS WE BEGIN TO TALK ABOUT

1122
00:46:36,907 --> 00:46:39,276
BIG DATA SCIENCE AND 

1123
00:46:39,276 --> 00:46:40,844
UNDERSTANDING HEALTH 

1124
00:46:40,844 --> 00:46:43,079
DISPARITIES, I TOOK A LOOK AT 

1125
00:46:43,079 --> 00:46:44,247
SOME PARTICULAR RESEARCH 

1126
00:46:44,247 --> 00:46:45,582
REGARDING WHAT WE SHOULD 

1127
00:46:45,582 --> 00:46:49,019
ACTUALLY DO TO ENABLE THE 

1128
00:46:49,019 --> 00:46:52,289
INNOVATION AS IT RELATES TO DATA

1129
00:46:52,289 --> 00:46:55,625
AND AFFECT CHANGE WITH HEALTH 

1130
00:46:55,625 --> 00:46:55,926
DISPARITIES.

1131
00:46:55,926 --> 00:46:59,729
THIS RESEARCH SAYS WE NEED TO 

1132
00:46:59,729 --> 00:47:01,431
INCORPORATE STANDARDIZED 

1133
00:47:01,431 --> 00:47:04,734
INFORMATION ON DEMOGRAPHIC AND 

1134
00:47:04,734 --> 00:47:05,368
SOCIAL DETERMINANTS OF HEALTH ON

1135
00:47:05,368 --> 00:47:06,570
ELECTRONIC HEALTH RECORDS.

1136
00:47:06,570 --> 00:47:08,772
THE GOAL IS TO IDENTIFY WAYS TO 

1137
00:47:08,772 --> 00:47:10,707
IMPROVE QUALITY OF CARE FOR THE 

1138
00:47:10,707 --> 00:47:12,309
MOST DISADVANTAGE POPULATIONS 

1139
00:47:12,309 --> 00:47:12,876
OVER TIME.

1140
00:47:12,876 --> 00:47:15,679
BY DOING THIS AND INCORPORATING 

1141
00:47:15,679 --> 00:47:18,114
THIS INFORMATION, WE CAN DO 

1142
00:47:18,114 --> 00:47:20,150
ANALYSIS THAT INCLUDES THESE AS 

1143
00:47:20,150 --> 00:47:21,284
FEATURES TO UNDERSTAND THE 

1144
00:47:21,284 --> 00:47:25,188
IMPACT ON THE HEALTH OUTCOMES.

1145
00:47:25,188 --> 00:47:28,158
WE NEED TO BE ABLE TO LINK 

1146
00:47:28,158 --> 00:47:30,327
GEOGRAPHIC VARIABLE AND SERMON 

1147
00:47:30,327 --> 00:47:31,895
SERMON TO CLINICAL DATA AND 

1148
00:47:31,895 --> 00:47:33,196
THESE HEALTH OUTCOMES.

1149
00:47:33,196 --> 00:47:35,398
THIS IS WHAT THESE DATA 

1150
00:47:35,398 --> 00:47:36,700
INNOVATION CAN DO IF WE HAVE 

1151
00:47:36,700 --> 00:47:38,235
ACCESS TO THE INFORMATION.

1152
00:47:38,235 --> 00:47:42,472
BUT WE ALSO NEED TO IDENTIFY THE

1153
00:47:42,472 --> 00:47:45,408
CAUSES OF THE HEALTH DISPARITIES

1154
00:47:45,408 --> 00:47:49,112
AND DEVELOP EFFECTIVE INT

1155
00:47:49,112 --> 00:47:50,947
INTERVEN

1156
00:47:50,947 --> 00:47:51,281
INTERVENTIONS.

1157
00:47:51,281 --> 00:47:52,849
WITHOUT THIS DATA WE WON'T BE 

1158
00:47:52,849 --> 00:47:53,683
ABLE TO DO IT.

1159
00:47:53,683 --> 00:47:54,918
THE POSSIBILITIES ARE THERE.

1160
00:47:54,918 --> 00:47:58,455
IF WE ARE ABLE TO COLLECT THIS 

1161
00:47:58,455 --> 00:48:00,156
DATA, STANDARDIZE IT AND LINK IT

1162
00:48:00,156 --> 00:48:02,792
TO THE HEALTH OUTCOMES, WE ARE 

1163
00:48:02,792 --> 00:48:04,928
ABLE TO IDENTIFY THOSE HEALTH 

1164
00:48:04,928 --> 00:48:05,228
DISPARITIES.

1165
00:48:05,228 --> 00:48:07,163
SO THOSE ARE ALL THE 

1166
00:48:07,163 --> 00:48:08,064
POSSIBILITIES THAT ARE THERE.

1167
00:48:08,064 --> 00:48:09,766
WHAT ARE THE PITFALLS AND THE 

1168
00:48:09,766 --> 00:48:13,136
THINGS WE HAVE TO ADDRESS IS 

1169
00:48:13,136 --> 00:48:17,207
HOMOGENEOUS DATA.

1170
00:48:17,207 --> 00:48:21,911
SO DATA THAT BASICALLY LACKS 

1171
00:48:21,911 --> 00:48:23,246
ROBUST INFORMATION ABOUT ALL 

1172
00:48:23,246 --> 00:48:23,847
POPULATIONS.

1173
00:48:23,847 --> 00:48:26,449
DATA THAT DOES NOT INCLUDE SMALL

1174
00:48:26,449 --> 00:48:26,750
POPULATIONS.

1175
00:48:26,750 --> 00:48:32,555
AND SO SMALL POPULATIONS, THEY 

1176
00:48:32,555 --> 00:48:34,524
ARE DEFINITELY CHALLENGING FOR 

1177
00:48:34,524 --> 00:48:35,925
PRIVACY REASONS.

1178
00:48:35,925 --> 00:48:37,027
RESEARCHERS MAY NOT HAVE ACCESS 

1179
00:48:37,027 --> 00:48:39,562
TO SIGNIFICANT NUMBERS OR 

1180
00:48:39,562 --> 00:48:41,197
SUFFICIENT NUMBER OF INDIVIDUALS

1181
00:48:41,197 --> 00:48:43,667
WITHIN A PARTICULAR POPULATION.

1182
00:48:43,667 --> 00:48:45,568
SO THIS MAKES IT EXTREMELY 

1183
00:48:45,568 --> 00:48:49,306
CHALLENGING TO DO ANY TYPE OF 

1184
00:48:49,306 --> 00:48:50,340
ANALYSIS.

1185
00:48:50,340 --> 00:48:53,410
AND PROVIDE ANYTHING OTHER THAN 

1186
00:48:53,410 --> 00:48:56,079
ANECDOTAL LIKE ASSESSMENT OF 

1187
00:48:56,079 --> 00:48:57,047
THOSE INDIVIDUALS.

1188
00:48:57,047 --> 00:48:58,882
SO THIS IS WHERE DATA SHARING 

1189
00:48:58,882 --> 00:49:01,451
AMONG ORGANIZATIONS BECOMES VERY

1190
00:49:01,451 --> 00:49:03,653
IMPORTANT, BUT FOR PRIVACY 

1191
00:49:03,653 --> 00:49:05,188
REASONS AND CONFIDENTIALITY 

1192
00:49:05,188 --> 00:49:09,592
REASONS, WE HAVE TO PROVIDE 

1193
00:49:09,592 --> 00:49:11,261
MECHANISMS THAT ENABLE THAT 

1194
00:49:11,261 --> 00:49:13,863
LEVEL OF SHARING IN A PRIVACY 

1195
00:49:13,863 --> 00:49:16,199
PRESERVING AND CONFIDENTIAL 

1196
00:49:16,199 --> 00:49:16,499
MANNER.

1197
00:49:16,499 --> 00:49:17,867
AND I WILL TALK ABOUT, YOU KNOW,

1198
00:49:17,867 --> 00:49:20,970
WORK THAT WE ARE DOING IN THE 

1199
00:49:20,970 --> 00:49:23,073
CENTER FOR DISTRIBUTING 

1200
00:49:23,073 --> 00:49:24,407
CONFIDENTIAL COMPUTES THAT CAN 

1201
00:49:24,407 --> 00:49:25,642
ASSIST WITH THAT.

1202
00:49:25,642 --> 00:49:28,545
AND THEN THE LACK OF MECHANISMS 

1203
00:49:28,545 --> 00:49:30,547
SO ENSURE PRIVACY AMONG SMALL 

1204
00:49:30,547 --> 00:49:34,351
POP LEULA

1205
00:49:34,351 --> 00:49:35,719
POPULATIONS, THIS BECOMES 

1206
00:49:35,719 --> 00:49:36,920
IMPORTANT BECAUSE AS I STATED AT

1207
00:49:36,920 --> 00:49:38,655
THE BEGINNING, ANYTHING THAT 

1208
00:49:38,655 --> 00:49:41,024
MAKES YOU UNIQUE, CAN BE USED TO

1209
00:49:41,024 --> 00:49:43,493
LINK YOU TO IDENTIFYING 

1210
00:49:43,493 --> 00:49:45,395
INFORMATION EVEN IF THOSE 

1211
00:49:45,395 --> 00:49:46,029
IDENTIFIERS ARE NOT PRESENT IN 

1212
00:49:46,029 --> 00:49:49,399
THE DATA.

1213
00:49:49,399 --> 00:49:52,969
AND SO NO MECHANISMS TO ENSURE 

1214
00:49:52,969 --> 00:49:54,938
SECURE COMPUTATION THAT PROMOTE 

1215
00:49:54,938 --> 00:49:55,839
WIDESPREAD DATA SHARING.

1216
00:49:55,839 --> 00:49:57,307
WE TALKED ABOUT THE IMPORTANCE 

1217
00:49:57,307 --> 00:49:59,042
OF DATA SHARING BECAUSE OF THE 

1218
00:49:59,042 --> 00:50:04,514
LACK OF DATA ON SMALL 

1219
00:50:04,514 --> 00:50:05,882
POPULATIOPOPULA

1220
00:50:05,882 --> 00:50:06,449
POPULATIONS, IT WOULD BE 

1221
00:50:06,449 --> 00:50:07,083
IMPORTANT FOR INDIVIDUALS OR 

1222
00:50:07,083 --> 00:50:08,084
ORGANIZATIONS TO SHARE 

1223
00:50:08,084 --> 00:50:08,385
INFORMATION.

1224
00:50:08,385 --> 00:50:11,621
HOW DO WE SHARE THIS OR DO 

1225
00:50:11,621 --> 00:50:13,757
COMPUTATION ON THIS DATA THAT IS

1226
00:50:13,757 --> 00:50:17,494
OWNED BY DIFFERENT ENTITIES IN A

1227
00:50:17,494 --> 00:50:21,297
SECURE AND A PRIVACY-PRESERVING 

1228
00:50:21,297 --> 00:50:21,464
WAY.

1229
00:50:21,464 --> 00:50:23,867
WHILE WE MAY NOT ACTUALLY 

1230
00:50:23,867 --> 00:50:25,402
PHYSICALLY SHARE THE DATA, BUT 

1231
00:50:25,402 --> 00:50:27,137
WE COULD BENEFIT FOR COMPUTATION

1232
00:50:27,137 --> 00:50:29,739
ON THIS DATA THAT IS OWNED BY 

1233
00:50:29,739 --> 00:50:30,173
DIFFERENT ENTITIES.

1234
00:50:30,173 --> 00:50:31,474
OKAY?

1235
00:50:31,474 --> 00:50:33,810
AND SO IF WE ARE NOT ABLE TO DO 

1236
00:50:33,810 --> 00:50:39,149
THOSE THINGS, THAT BECOMES THE 

1237
00:50:39,149 --> 00:50:39,416
PITFALLS.

1238
00:50:39,416 --> 00:50:41,151
SO HERE I THINK WE ARE AT THE 

1239
00:50:41,151 --> 00:50:42,952
NEXT SLIDE.

1240
00:50:42,952 --> 00:50:46,389
I THINK IF YOU PRESS DOWN AGAIN.

1241
00:50:46,389 --> 00:50:48,057
SO THE GRAND CHALLENGE IS HOW 

1242
00:50:48,057 --> 00:50:50,527
CAN WE SHARE AND HOW CAN WE 

1243
00:50:50,527 --> 00:50:53,163
PROTECT DATA AND USE AT SCALE?

1244
00:50:53,163 --> 00:51:00,103
SO ONE OF THE OBJECTIVES, 

1245
00:51:00,103 --> 00:51:02,105
ESPECIALLY WE MAY HAVE DATA BUT 

1246
00:51:02,105 --> 00:51:03,940
NOT A SUFFICIENT AMOUNT OF DATA 

1247
00:51:03,940 --> 00:51:07,010
TO DO THE ANALYSIS WE WANT.

1248
00:51:07,010 --> 00:51:08,144
MULTIPLE ORGANIZATIONS MAY, IN 

1249
00:51:08,144 --> 00:51:10,513
AN AGGREGATE, HAVE THE DATA THAT

1250
00:51:10,513 --> 00:51:11,047
IS NEEDED.

1251
00:51:11,047 --> 00:51:13,049
BUT WHAT CAN WE DO TO USE THIS 

1252
00:51:13,049 --> 00:51:18,421
DATA ACROSS ORGANIZATIONS TO 

1253
00:51:18,421 --> 00:51:23,860
FACILITATE THAT EASE OF USE 

1254
00:51:23,860 --> 00:51:25,261
WITHOUT HAVING, YOU KNOW, 

1255
00:51:25,261 --> 00:51:27,530
MULTIPLE IS USE AGREEMENTS AND 

1256
00:51:27,530 --> 00:51:28,898
THINGS OF THAT NATURE.

1257
00:51:28,898 --> 00:51:31,301
SO THE WORK THAT -- THIS IS A 

1258
00:51:31,301 --> 00:51:32,268
GRAND CHALLENGE FOR OUR CENTER 

1259
00:51:32,268 --> 00:51:34,671
AND THIS IS WHAT I'M GOING TO 

1260
00:51:34,671 --> 00:51:35,939
TALK ABOUT.

1261
00:51:35,939 --> 00:51:39,976
WE GIVE EXAMPLES FOR, YOU KNOW, 

1262
00:51:39,976 --> 00:51:41,811
AUTOMOBILE ORGANIZATIONS, 

1263
00:51:41,811 --> 00:51:42,846
BANKING, BUT ALSO HEALTH.

1264
00:51:42,846 --> 00:51:50,620
NEXT SLIDE, PLEASE.

1265
00:51:50,620 --> 00:51:52,622
AND SO THAT LAST LITTLE TAG 

1266
00:51:52,622 --> 00:51:55,425
THERE IS LIKE HOW CAN WE USE THE

1267
00:51:55,425 --> 00:51:57,694
DATA WITHOUT, LIKE, ACTUALLY 

1268
00:51:57,694 --> 00:52:01,331
EXPOSING OR SHARING THE DATA?

1269
00:52:01,331 --> 00:52:02,999
IS  -- OKAY.

1270
00:52:02,999 --> 00:52:06,836
IF YOU CAN HIT NEXT, PLEASE.

1271
00:52:06,836 --> 00:52:08,471
SO AS THIS IS POPULATING, 

1272
00:52:08,471 --> 00:52:10,974
BASICALLY WHAT WE ARE SEEING IS 

1273
00:52:10,974 --> 00:52:15,578
LIKE DIFFERENT APPLICATIONS AT 

1274
00:52:15,578 --> 00:52:19,048
THE TOP OF THIS DRAWING AND ONE 

1275
00:52:19,048 --> 00:52:21,618
OF THOSE IS CONFIDENTIAL 

1276
00:52:21,618 --> 00:52:21,885
PROGNOSIS.

1277
00:52:21,885 --> 00:52:23,319
SO IN ORDER TO ACTUALLY 

1278
00:52:23,319 --> 00:52:27,156
DETERMINE A DISEASE PROGNOSIS, I

1279
00:52:27,156 --> 00:52:28,258
MAY NEED ADDITIONAL INFORMATION 

1280
00:52:28,258 --> 00:52:30,193
THAT IS EXTERNAL TO MY 

1281
00:52:30,193 --> 00:52:30,527
ORGANIZATION.

1282
00:52:30,527 --> 00:52:33,229
HOW DO I ACTUALLY ACCESS THIS 

1283
00:52:33,229 --> 00:52:34,864
INFORMATION AND LEVERAGE IT IN 

1284
00:52:34,864 --> 00:52:38,434
ANY ANALYSIS WITHOUT, YOU KNOW, 

1285
00:52:38,434 --> 00:52:39,769
EXPOSING INFORMATION AND 

1286
00:52:39,769 --> 00:52:43,106
PRESERVING PRIVACY ABOUT THE 

1287
00:52:43,106 --> 00:52:44,107
INDIVIDUAL?

1288
00:52:44,107 --> 00:52:45,942
THERE'S CONFIDENTIAL DRUG 

1289
00:52:45,942 --> 00:52:46,242
DEVELOPMENT.

1290
00:52:46,242 --> 00:52:49,045
AND THERE ARE OTHER APPLICATIONS

1291
00:52:49,045 --> 00:52:50,580
THAT, YOU KNOW, WE ARE LOOKING 

1292
00:52:50,580 --> 00:52:50,813
AT.

1293
00:52:50,813 --> 00:52:53,650
AND SO IN THE MIDDLE, WHAT YOU 

1294
00:52:53,650 --> 00:52:55,818
SEE IN THOSE TIERS THAT ARE 

1295
00:52:55,818 --> 00:52:59,689
HOLDING UP THOSE APPLICATIONS, 

1296
00:52:59,689 --> 00:53:01,758
IS WE NEED SOME LEVEL OF TRUST.

1297
00:53:01,758 --> 00:53:04,360
ONE OF MY RESEARCH AREAS IS 

1298
00:53:04,360 --> 00:53:06,462
TRUST AND TRUST IN COMPUTING.

1299
00:53:06,462 --> 00:53:08,264
AND SO IN THIS, IN THE WORK THAT

1300
00:53:08,264 --> 00:53:10,333
WE ARE DOING, WE ARE NOT TALKING

1301
00:53:10,333 --> 00:53:12,602
ABOUT JUST SOCIAL TRUST.

1302
00:53:12,602 --> 00:53:14,637
SO SOCIAL TRUST IS I TRUST YOU 

1303
00:53:14,637 --> 00:53:18,308
BECAUSE YOU REPRESENT A BRAND 

1304
00:53:18,308 --> 00:53:20,076
AND THAT BRAND HAS SOME LEVEL OF

1305
00:53:20,076 --> 00:53:22,145
SOCIAL TRUST, RIGHT?

1306
00:53:22,145 --> 00:53:24,180
WHAT WE ARE LOOKING AT HERE WITH

1307
00:53:24,180 --> 00:53:27,784
REGARDS TO TRUST IS TRUST THAT 

1308
00:53:27,784 --> 00:53:29,652
CAN BE PROVEN AND HARDENED TRUST

1309
00:53:29,652 --> 00:53:34,357
AND ITS IS ACTUALLY MORE OF A 

1310
00:53:34,357 --> 00:53:36,626
PHYSICAL TRUST INSTEAD OF -- AND

1311
00:53:36,626 --> 00:53:38,628
A BEHAVIORAL TRUST.

1312
00:53:38,628 --> 00:53:43,333
WE WANT TO ENSURE THAT WHEN WE 

1313
00:53:43,333 --> 00:53:45,435
WERE ACTUALLY DOING A 

1314
00:53:45,435 --> 00:53:47,503
COMPUTATION ON DATA OR A DATA 

1315
00:53:47,503 --> 00:53:49,072
ANALYSIS, THAT IS THE SOFTWARE 

1316
00:53:49,072 --> 00:53:53,176
THAT HAS BEEN IMPLEMENTED DOES 

1317
00:53:53,176 --> 00:53:55,144
EXACTLY WHAT IT SAYS IT DOES AND

1318
00:53:55,144 --> 00:53:59,549
THOSE ACTIONS OF THAT SOFTWARE 

1319
00:53:59,549 --> 00:54:01,751
ARE ENFORCED BY A POLICY.

1320
00:54:01,751 --> 00:54:06,389
SO HERE WE ARE TALKING ABOUT 

1321
00:54:06,389 --> 00:54:07,857
HARDENED BEHAVIORAL TRUST.

1322
00:54:07,857 --> 00:54:09,626
WE TRUST THE SOFTWARE BECAUSE IT

1323
00:54:09,626 --> 00:54:11,160
BEHAVES IN A CERTAIN WAY.

1324
00:54:11,160 --> 00:54:13,262
OTHER THAN SOCIAL TRUST, I TRUST

1325
00:54:13,262 --> 00:54:17,133
YOU BECAUSE YOUR BRAND IS 

1326
00:54:17,133 --> 00:54:18,201
TRUSTWORTHY.

1327
00:54:18,201 --> 00:54:19,936
AND THAT TRUSTWORTHINESS MAY BE 

1328
00:54:19,936 --> 00:54:22,872
BECAUSE YOU ARE THE MOST KNOWN 

1329
00:54:22,872 --> 00:54:23,740
ENTITY IN THE SPACE.

1330
00:54:23,740 --> 00:54:27,243
BUT WE'RE DEALING MORE WITH THE 

1331
00:54:27,243 --> 00:54:29,345
HARDENED TRUST, THE BEHAVIORAL 

1332
00:54:29,345 --> 00:54:30,580
TRUST, THAT YOU ARE ABLE TO 

1333
00:54:30,580 --> 00:54:32,181
PROVE THAT YOU ARE MEETING THE 

1334
00:54:32,181 --> 00:54:35,852
REQUIREMENTS OF A SPECIFIC 

1335
00:54:35,852 --> 00:54:36,919
POLICY.

1336
00:54:36,919 --> 00:54:39,088
AND SO THE NEXT TIER IS 

1337
00:54:39,088 --> 00:54:42,492
CONFIDENTIAL OUTSOURCING.

1338
00:54:42,492 --> 00:54:44,627
I WANT TO BE ABLE TO DO 

1339
00:54:44,627 --> 00:54:47,497
COMPUTATIONAL AND DATA, BUT ALL 

1340
00:54:47,497 --> 00:54:50,633
OF THE ENTITIES DO NOT NEED TO 

1341
00:54:50,633 --> 00:54:53,036
SHARE THE DATA WITH EACH OTHER, 

1342
00:54:53,036 --> 00:54:55,505
BUT THE COMPUTATION -- THEY WILL

1343
00:54:55,505 --> 00:55:00,943
SHARE WITH HARDWARE THAT DOES 

1344
00:55:00,943 --> 00:55:01,944
THE COMPUTATION AND THAT THE 

1345
00:55:01,944 --> 00:55:03,880
RESULTS OF THE COMPUTATION WILL 

1346
00:55:03,880 --> 00:55:06,215
BE SHARED, BUT THE ACTUAL DATA 

1347
00:55:06,215 --> 00:55:08,151
WILL NOT BE SHARED BETWEEN THE 

1348
00:55:08,151 --> 00:55:08,418
ENTITIES.

1349
00:55:08,418 --> 00:55:11,821
SO IF I HAVE MULTIPLE ENTITIES 

1350
00:55:11,821 --> 00:55:13,823
THAT HAVE DATA AND THESE 

1351
00:55:13,823 --> 00:55:15,425
ENTITIES CAN BENEFIT FROM 

1352
00:55:15,425 --> 00:55:19,062
ANALYSIS ON THAT DATA, THEY 

1353
00:55:19,062 --> 00:55:22,732
COULD SHARE THAT DATA WITH THE 

1354
00:55:22,732 --> 00:55:24,467
CLOUD RESOURCE THAT'S DOING THE 

1355
00:55:24,467 --> 00:55:28,705
COMPUTATION, BUT THAT DATA IS 

1356
00:55:28,705 --> 00:55:32,542
NOT SHARED IN AN UNENCRYPTED WAY

1357
00:55:32,542 --> 00:55:34,310
OUTSIDE OF THAT COMPUTATIONAL 

1358
00:55:34,310 --> 00:55:34,544
ENTITY.

1359
00:55:34,544 --> 00:55:38,281
I WILL DRILL DOWN A LITTLE BIT 

1360
00:55:38,281 --> 00:55:40,917
LATER ABOUT THAT.

1361
00:55:40,917 --> 00:55:44,420
AND SO THE LAST TIER AND I 

1362
00:55:44,420 --> 00:55:46,989
TALKED A LITTLE BIT ABOUT THAT 

1363
00:55:46,989 --> 00:55:48,391
IS THE CONFIDENTIAL 

1364
00:55:48,391 --> 00:55:48,725
COLLABORATION.

1365
00:55:48,725 --> 00:55:49,926
YOU SHARE YOUR INFORMATION, BUT 

1366
00:55:49,926 --> 00:55:53,162
IT IS NOT WITH A COMPUTATIONAL 

1367
00:55:53,162 --> 00:55:53,396
SOURCE.

1368
00:55:53,396 --> 00:55:55,231
AND LET'S SAY THAT IS A CLOUD 

1369
00:55:55,231 --> 00:55:55,498
RESOURCE.

1370
00:55:55,498 --> 00:55:59,168
BUT IT IS NOT SHARED WITH THE 

1371
00:55:59,168 --> 00:56:01,137
OTHER COLLABORATORS AND WHAT YOU

1372
00:56:01,137 --> 00:56:02,371
GET IS THE RESULT OF THAT.

1373
00:56:02,371 --> 00:56:04,607
AND THAT IS THE GOAL AND THE 

1374
00:56:04,607 --> 00:56:05,475
OBJECTIVE OF THE WORK THAT WE'RE

1375
00:56:05,475 --> 00:56:06,776
DOING.

1376
00:56:06,776 --> 00:56:11,814
HOW IT RELATES BACK TO THE 

1377
00:56:11,814 --> 00:56:14,150
PROBLEM OF, YOU KNOW, HOW DO WE 

1378
00:56:14,150 --> 00:56:16,119
ENABLE DATA INNOVATION IS THAT 

1379
00:56:16,119 --> 00:56:19,856
WITHOUT HAVING TRUSTED 

1380
00:56:19,856 --> 00:56:21,758
COMPUTATION AND CONFIDENTIAL 

1381
00:56:21,758 --> 00:56:23,326
OUTSOURCING TO USE EXTERNAL 

1382
00:56:23,326 --> 00:56:25,128
RESOURCES WITH AND LIMITING WHAT

1383
00:56:25,128 --> 00:56:27,163
YOU SHARE WITH THOSE RESOURCES 

1384
00:56:27,163 --> 00:56:28,831
AND THE CONFIDENTIAL 

1385
00:56:28,831 --> 00:56:31,901
COLLABORATION, WE WILL NOT BE 

1386
00:56:31,901 --> 00:56:34,837
ABLE TO DO THE DATA INNOVATION 

1387
00:56:34,837 --> 00:56:38,007
OR REALIZE THE DATA INNOVATIONS 

1388
00:56:38,007 --> 00:56:40,576
THAT ARE POSSIBLE WHEN WE ARE 

1389
00:56:40,576 --> 00:56:43,045
ABLE TO SHARE RESOURCES IN A 

1390
00:56:43,045 --> 00:56:46,649
CONFIDENTIAL AND PRIVATE WAY.

1391
00:56:46,649 --> 00:56:47,016
OKAY.

1392
00:56:47,016 --> 00:56:49,185
LET'S -- I'M ACTUALLY, I HAVE 

1393
00:56:49,185 --> 00:56:50,553
ABOUT EIGHT MINUTES SO I'M GOING

1394
00:56:50,553 --> 00:56:55,458
TO HAVE TO SKIP A FEW THINGS AND

1395
00:56:55,458 --> 00:56:59,262
GET TO THE -- AND GET TO THE
Q&A

1396
00:56:59,262 --> 00:57:00,429
PART OF THIS.

1397
00:57:00,429 --> 00:57:02,698
BUT I'M HOPING THAT I WAS ABLE 

1398
00:57:02,698 --> 00:57:06,369
TO DRILL DOWN ENOUGH SO YOU SEE 

1399
00:57:06,369 --> 00:57:09,238
THE CONNECTION AND THE NEED FOR,

1400
00:57:09,238 --> 00:57:11,140
YOU KNOW, I WILL SAY 

1401
00:57:11,140 --> 00:57:13,743
CONFIDENTIAL COMPUTING, A 

1402
00:57:13,743 --> 00:57:14,977
CONFIDENTIAL COMPUTING 

1403
00:57:14,977 --> 00:57:17,346
INFRASTRUCTURE TO ENABLE DATA 

1404
00:57:17,346 --> 00:57:20,016
INNOVATION THAT WILL ALLOW US TO

1405
00:57:20,016 --> 00:57:22,585
ADDRESS SOME OF THE HEALTH 

1406
00:57:22,585 --> 00:57:22,985
DISPARITIES.

1407
00:57:22,985 --> 00:57:24,987
AND SO I HAVE SAID A LITTLE BIT 

1408
00:57:24,987 --> 00:57:25,521
ABOUT THIS.

1409
00:57:25,521 --> 00:57:27,456
THIS IS A PRETTY BUSY PICTURE 

1410
00:57:27,456 --> 00:57:27,657
HERE.

1411
00:57:27,657 --> 00:57:29,192
IT TALKS ABOUT THE SPECIFIC 

1412
00:57:29,192 --> 00:57:31,994
THRUST OF THE CENTERS.

1413
00:57:31,994 --> 00:57:36,699
SO IF YOU LOOK AT THE LOWER PART

1414
00:57:36,699 --> 00:57:38,534
BENEATH THE BOXES WHERE YOU HAVE

1415
00:57:38,534 --> 00:57:40,436
THE PROGRAM CERTIFICATION, 

1416
00:57:40,436 --> 00:57:43,139
PROGRAM CERTIFICATION IS 

1417
00:57:43,139 --> 00:57:45,041
IMPORTANT.

1418
00:57:45,041 --> 00:57:48,811
THAT'S THE INSURANCE THAT -- OR 

1419
00:57:48,811 --> 00:57:49,846
THE ASSURANCE THAT THE SOFTWARE 

1420
00:57:49,846 --> 00:57:51,681
THAT IS GOING TO DO THE ANALYSIS

1421
00:57:51,681 --> 00:57:53,616
IS GOING TO MEET THE POLICY.

1422
00:57:53,616 --> 00:57:56,452
AND THOSE POLICIES ARE DECIDED 

1423
00:57:56,452 --> 00:57:59,188
BY, FOR EXAMPLE, ORGANIZATIONS 

1424
00:57:59,188 --> 00:58:02,625
THAT COULD BENEFIT FOR THE 

1425
00:58:02,625 --> 00:58:05,761
ANALYSIS OF DATA, THE DATA 

1426
00:58:05,761 --> 00:58:06,662
AGGREGATE, NOT JUST ONLY DATA 

1427
00:58:06,662 --> 00:58:08,798
THAT THEY OWN, BUT DATA THAT IS 

1428
00:58:08,798 --> 00:58:13,970
OWNED BY OTHER ORGANIZATIONS.

1429
00:58:13,970 --> 00:58:15,471
AND SO THEIR SPECIFIC POLICIES 

1430
00:58:15,471 --> 00:58:19,709
LIKE WHAT INFORMATION CAN BE 

1431
00:58:19,709 --> 00:58:21,911
SHARED?

1432
00:58:21,911 --> 00:58:22,945
WHAT INFORMATION LOSS COULD 

1433
00:58:22,945 --> 00:58:24,280
THOSE ORGANIZATIONS SUPPORT?

1434
00:58:24,280 --> 00:58:28,351
WHEN I SAY LOSS, LIKE, WHAT MAY 

1435
00:58:28,351 --> 00:58:31,153
BE LEARNED THAT WOULD LIMIT THE 

1436
00:58:31,153 --> 00:58:32,588
PRIVACY OF THE INDIVIDUALS IN 

1437
00:58:32,588 --> 00:58:34,690
THE DATA SET, RIGHT?

1438
00:58:34,690 --> 00:58:37,493
SO HOW MUCH RISK ARE THEY ABLE 

1439
00:58:37,493 --> 00:58:38,461
TO TAKE ON?

1440
00:58:38,461 --> 00:58:40,897
SO YOU HAVE THESE ASSURANCE 

1441
00:58:40,897 --> 00:58:43,165
NOTES THAT'S GOING TO BE DOING 

1442
00:58:43,165 --> 00:58:47,536
THE CHECKING AND THEN THERE IS 

1443
00:58:47,536 --> 00:58:48,471
THE WORK FLOW.

1444
00:58:48,471 --> 00:58:50,506
AND SO I'LL TAKE A MOMENT JUST 

1445
00:58:50,506 --> 00:58:53,676
TO TALK ABOUT, LIKE, I TALKED 

1446
00:58:53,676 --> 00:58:55,044
ABOUT THIS CONFIDENTIAL 

1447
00:58:55,044 --> 00:58:56,879
COMPUTING AND HOW CAN WE REALIZE

1448
00:58:56,879 --> 00:58:57,079
THAT?

1449
00:58:57,079 --> 00:58:58,514
THE TECHNOLOGY IS THERE NOW.

1450
00:58:58,514 --> 00:59:00,683
IT HAS EVOLVED OVER TIME.

1451
00:59:00,683 --> 00:59:03,986
AND SO WHAT YOU HAVE IS THE 

1452
00:59:03,986 --> 00:59:06,088
ABILITY AT THIS POINT WHERE YOUR

1453
00:59:06,088 --> 00:59:09,091
CENTRAL PROCESSING UNIT CAN 

1454
00:59:09,091 --> 00:59:12,428
SECTION OFF MEMORY, GIVE USER 

1455
00:59:12,428 --> 00:59:14,897
LEVEL APPLICATIONS AND THE 

1456
00:59:14,897 --> 00:59:16,699
OPERATING SYSTEM THE ABILITY TO 

1457
00:59:16,699 --> 00:59:18,668
ACTUALLY SET UP THESE PROTECTIVE

1458
00:59:18,668 --> 00:59:21,504
MEMORY AREAS WITHIN YOUR RANDOM 

1459
00:59:21,504 --> 00:59:24,040
ACCESS MEMORY, RAM, THAT ARE 

1460
00:59:24,040 --> 00:59:28,110
CALLED ENCLAVES.

1461
00:59:28,110 --> 00:59:32,648
AND SO EVEN A USER PROGRAM'S 

1462
00:59:32,648 --> 00:59:34,850
ENCLAVE CANNOT BE ACCESSED BY 

1463
00:59:34,850 --> 00:59:36,419
THE OPERATING SYSTEM.

1464
00:59:36,419 --> 00:59:38,120
I MAY HAVE COMPUTER SCIENTISTS 

1465
00:59:38,120 --> 00:59:40,990
IN THE ROOM WHO ARE NOT FAMILIAR

1466
00:59:40,990 --> 00:59:42,692
WITH TRUSTING COMPUTING OR 

1467
00:59:42,692 --> 00:59:43,726
CONFIDENTIAL COMPUTING.

1468
00:59:43,726 --> 00:59:45,227
THIS IS AN INNOVATION THAT HAS 

1469
00:59:45,227 --> 00:59:46,829
HAPPENED OVER YEARS.

1470
00:59:46,829 --> 00:59:52,034
IT BEGAN WITH CRYPTOGRAPHIC 

1471
00:59:52,034 --> 00:59:53,569
CO-PROCESSERS, THAT IS A 

1472
00:59:53,569 --> 00:59:56,305
SEPARATE PROCESSER THAT IS IN 

1473
00:59:56,305 --> 01:00:01,110
ITS OWN ENCASING THAT IS AN 

1474
01:00:01,110 --> 01:00:04,113
ADAPTER THAT IS ADDED TO YOUR 

1475
01:00:04,113 --> 01:00:06,682
COMPUTER, BUT WITH THE 

1476
01:00:06,682 --> 01:00:13,222
CRYPTOGRAPHIC CO-PROCESSERS, 

1477
01:00:13,222 --> 01:00:15,091
THEY WERE BUILT BY IBM.

1478
01:00:15,091 --> 01:00:16,559
THEY WERE LIMITED IN 

1479
01:00:16,559 --> 01:00:16,959
FUNCTIONALITY.

1480
01:00:16,959 --> 01:00:20,329
WE NEEDED A MORE GENERAL PURPOSE

1481
01:00:20,329 --> 01:00:21,764
FRAMEWORK TO DO THE DATA 

1482
01:00:21,764 --> 01:00:22,865
ANALYSIS AND COMPUTATION HERE 

1483
01:00:22,865 --> 01:00:24,934
BECAUSE THE ANALYSIS WE WANT TO 

1484
01:00:24,934 --> 01:00:26,068
DO MAY BE EVER CHANGING.

1485
01:00:26,068 --> 01:00:29,305
SO WE NEED TO BE ABLE TO DO THIS

1486
01:00:29,305 --> 01:00:31,207
WITHOUT SIGNIFICANT OVERHEAD OF 

1487
01:00:31,207 --> 01:00:37,546
THE USE OF A CRYPTOGRAPHIC 

1488
01:00:37,546 --> 01:00:42,184
CO-PROCESSER AND THE SOFTWARE ON

1489
01:00:42,184 --> 01:00:43,486
THE ADAPTER.

1490
01:00:43,486 --> 01:00:46,022
THERE IS NEW TECHNOLOGY WITH 

1491
01:00:46,022 --> 01:00:49,658
INTEL THAT ALLOW US TO CREATE 

1492
01:00:49,658 --> 01:00:52,428
DATA ENCLAVES WHERE DATA IS 

1493
01:00:52,428 --> 01:00:55,197
ENCRYPTED AND NO ENTITY RUNNING 

1494
01:00:55,197 --> 01:00:56,966
ON THE COMPUTER, NO OTHER 

1495
01:00:56,966 --> 01:00:58,334
SOFTWARE CAN ACCESS IT OTHER 

1496
01:00:58,334 --> 01:00:59,969
THAN THE SOFTWARE THAT IS 

1497
01:00:59,969 --> 01:01:02,171
RUNNING AND SET UP THAT 

1498
01:01:02,171 --> 01:01:02,738
PROTECTIVE ZONE.

1499
01:01:02,738 --> 01:01:04,373
AND SO IT IS IMPORTANT TO KIND 

1500
01:01:04,373 --> 01:01:05,908
OF UNDERSTAND, LIKE, HOW THIS 

1501
01:01:05,908 --> 01:01:12,982
SHARING CAN ACTUALLY HAPPEN 

1502
01:01:12,982 --> 01:01:14,650
WHEN -- AND THAT THE TECHNOLOGY 

1503
01:01:14,650 --> 01:01:16,552
EXISTS NOW AND WHAT WE ARE DOING

1504
01:01:16,552 --> 01:01:19,655
AT THE CENTER FOR DISTRIBUTIVE 

1505
01:01:19,655 --> 01:01:23,359
AND CONFIDENTIAL COMPUTING IS 

1506
01:01:23,359 --> 01:01:24,627
BUILDING OUT THE INFRASTRUCTURE 

1507
01:01:24,627 --> 01:01:27,229
THAT WILL ENABLE US TO SUPPORT 

1508
01:01:27,229 --> 01:01:28,998
POLICIES THAT ARE DEFINED BY 

1509
01:01:28,998 --> 01:01:29,965
ORGANIZATIONS AND CERTIFY CODE 

1510
01:01:29,965 --> 01:01:31,734
TO ENSURE THAT THE CODE IS GOING

1511
01:01:31,734 --> 01:01:33,769
TO DO WHAT IT SAYS THAT IT WILL 

1512
01:01:33,769 --> 01:01:35,538
DO AND IT MEETS THE REQUIREMENTS

1513
01:01:35,538 --> 01:01:36,739
OF THOSE POLICIES.

1514
01:01:36,739 --> 01:01:38,941
SO I HAVE ABOUT THREE MINUTES.

1515
01:01:38,941 --> 01:01:45,781
LET'S GO TO THE NEXT SLIDE, 

1516
01:01:45,781 --> 01:01:49,785
PLEASE.

1517
01:01:49,785 --> 01:01:52,121
OKAY.

1518
01:01:52,121 --> 01:01:54,557
SO WITH THE CONFIDENTIAL DISEASE

1519
01:01:54,557 --> 01:01:55,324
PROGNOSIS, THIS PARTICULAR SLIDE

1520
01:01:55,324 --> 01:01:57,293
JUST TELLS YOU THE THINGS WE ARE

1521
01:01:57,293 --> 01:01:58,994
WORKING ON LIKE WITH REGARDS TO 

1522
01:01:58,994 --> 01:02:01,430
HOW CAN ENFORCEABLE POLICIES OF 

1523
01:02:01,430 --> 01:02:03,265
USE OF PATIENT DATA BE SPECIFIED

1524
01:02:03,265 --> 01:02:05,201
TO MEET THE REQUIREMENTS, FOR 

1525
01:02:05,201 --> 01:02:09,472
EXAMPLE, OF THE HOSPITAL?

1526
01:02:09,472 --> 01:02:11,807
HOW CAN THIRD PARTY PROGNOSIS 

1527
01:02:11,807 --> 01:02:14,043
PROGRAMS BE TRUSTED TO 

1528
01:02:14,043 --> 01:02:16,212
FAITHFULLY ENFORCE THE DATA-USE 

1529
01:02:16,212 --> 01:02:16,612
POLICIES?

1530
01:02:16,612 --> 01:02:19,982
AND HOW CAN THE WHOLE PROGNOSIS 

1531
01:02:19,982 --> 01:02:21,217
WORKFLOW OFFER ADEQUATE DATA 

1532
01:02:21,217 --> 01:02:22,651
PROTECTION AND RUNTIME?

1533
01:02:22,651 --> 01:02:24,920
AND HOW CAN WE MAKE THIS USER 

1534
01:02:24,920 --> 01:02:25,488
FRIENDLY?

1535
01:02:25,488 --> 01:02:28,090
SO THOSE ARE THE THINGS WE ARE 

1536
01:02:28,090 --> 01:02:29,358
WORKING ON RIGHT NOW.

1537
01:02:29,358 --> 01:02:39,802
NEXT SLIDE, PLEASE. DATA 

1538
01:02:46,909 --> 01:02:51,447
FLOWING IN FROM IO T, YOU HAVE 

1539
01:02:51,447 --> 01:02:51,847
GENOMIC DATA.

1540
01:02:51,847 --> 01:02:54,817
YOU HAVE SOME ADDITIONAL 

1541
01:02:54,817 --> 01:02:57,353
APPLICATIONS THAT MAY BE COMING 

1542
01:02:57,353 --> 01:03:00,356
FROM A TAP STORE, BUT THIS 

1543
01:03:00,356 --> 01:03:02,825
ANALYSIS IS BEING DONE IN A 

1544
01:03:02,825 --> 01:03:03,993
CLOUD COMPUTING ENVIRONMENT THAT

1545
01:03:03,993 --> 01:03:05,928
HAS A TRUSTED EXECUTION 

1546
01:03:05,928 --> 01:03:07,930
ENVIRONMENT AND NONE OF THIS 

1547
01:03:07,930 --> 01:03:11,867
DATA WILL BE AVAILABLE OUTSIDE 

1548
01:03:11,867 --> 01:03:13,736
OF THAT MEMORY ENCLAVE AND WHAT 

1549
01:03:13,736 --> 01:03:17,239
YOU GET IS THE DISEASE PROGNOSIS

1550
01:03:17,239 --> 01:03:20,442
THAT MAY BE SENT TO THE HOSPITAL

1551
01:03:20,442 --> 01:03:22,144
AND INSURANCE COMPANY, BUT 

1552
01:03:22,144 --> 01:03:26,382
WITHOUT THAT DATA BEING SHARED 

1553
01:03:26,382 --> 01:03:28,984
WITH THESE EXTERNAL ENTITIES.

1554
01:03:28,984 --> 01:03:35,758
NEXT SLIDE, PLEASE.

1555
01:03:35,758 --> 01:03:37,826
ANOTHER PARTICULAR USE CASE IS 

1556
01:03:37,826 --> 01:03:44,667
FINE TUNING LARGE LANGUAGE 

1557
01:03:44,667 --> 01:03:47,069
MODELS FOR USE HOSPITAL DATA TO 

1558
01:03:47,069 --> 01:03:49,305
PRODUCE THIS CLINICAL SUMMARY.

1559
01:03:49,305 --> 01:03:51,307
WITHOUT THAT INFORMATION BEING 

1560
01:03:51,307 --> 01:03:53,609
EXPOSED OUTSIDE OF THAT TRUSTED 

1561
01:03:53,609 --> 01:03:54,210
EXECUTION ENVIRONMENT.

1562
01:03:54,210 --> 01:03:55,844
I'M GOING TO STOP HERE BECAUSE I

1563
01:03:55,844 --> 01:03:57,246
HAVE A MINUTE LEFT.

1564
01:03:57,246 --> 01:04:02,418
IF WE CAN GO TO THE THANK YOU 

1565
01:04:02,418 --> 01:04:02,918
SLIDE.

1566
01:04:02,918 --> 01:04:04,954
I HAVE A SLIDE WHERE I HAVE A 

1567
01:04:04,954 --> 01:04:08,290
LIST OF REFERENCES THAT I USE 

1568
01:04:08,290 --> 01:04:10,960
FOR THE HEALTH DISPARITIES 

1569
01:04:10,960 --> 01:04:11,627
RESEARCH.

1570
01:04:11,627 --> 01:04:15,831
BUT THIS IS NOT WORK THAT IS -- 

1571
01:04:15,831 --> 01:04:16,899
MISSED A SLIDE.

1572
01:04:16,899 --> 01:04:19,835
IF YOU CAN GO BACK UP, PLEASE, 

1573
01:04:19,835 --> 01:04:22,504
TO JUST THE -- I THINK I SAID TO

1574
01:04:22,504 --> 01:04:23,405
THE THANK YOU SLIDE.

1575
01:04:23,405 --> 01:04:26,575
THE SLIDE WHERE I LIST THE 

1576
01:04:26,575 --> 01:04:37,052
COLLABORATING INSTITUTIONS.

1577
01:04:38,554 --> 01:04:38,721
OKAY.

1578
01:04:38,721 --> 01:04:39,655
THE NEXT SLIDE, PLEASE.

1579
01:04:39,655 --> 01:04:39,855
THERE.

1580
01:04:39,855 --> 01:04:41,223
OKAY.

1581
01:04:41,223 --> 01:04:44,760
I DON'T HAVE ALL THE NAMES OF 

1582
01:04:44,760 --> 01:04:47,296
THE PIs ON THIS PROJECT, BUT 

1583
01:04:47,296 --> 01:04:51,267
THIS IS WORK, IT IS BEING LED BY

1584
01:04:51,267 --> 01:04:54,637
RESEARCHERS AT INDIANA 

1585
01:04:54,637 --> 01:04:56,872
UNIVERSITY, CARNEGIE MELON, 

1586
01:04:56,872 --> 01:04:58,574
DUKE, OHIO STATE, PENN STATE, 

1587
01:04:58,574 --> 01:04:59,708
PURDUE AND YALE.

1588
01:04:59,708 --> 01:05:02,044
THIS IS ONGOING WORK AND WE 

1589
01:05:02,044 --> 01:05:05,080
REALLY LOOK FOR OPPORTUNITIES TO

1590
01:05:05,080 --> 01:05:06,215
COLLABORATE ESPECIALLY WITHIN 

1591
01:05:06,215 --> 01:05:08,951
THE MEDICAL DOMAIN.

1592
01:05:08,951 --> 01:05:15,591
WE ARE ACTIVELY WORKING WITH IU 

1593
01:05:15,591 --> 01:05:17,026
MEDICAL ON CURRENT USE CASES AND

1594
01:05:17,026 --> 01:05:20,062
WE LOOK FOR OPPORTUNITIES TO 

1595
01:05:20,062 --> 01:05:22,464
COLLABORATE WITH OTHERS AND I'M 

1596
01:05:22,464 --> 01:05:23,599
GOING TO STOP HERE BECAUSE I'M 

1597
01:05:23,599 --> 01:05:25,067
ONE MINUTE OVER AND I LOOK 

1598
01:05:25,067 --> 01:05:28,771
FORWARD TO YOUR QUESTIONS.

1599
01:05:28,771 --> 01:05:31,907
>> GREAT, THANK YOU SO
MUCH, DR.

1600
01:05:31,907 --> 01:05:33,275
HILL, FOR THAT VERY ENGAGING AND

1601
01:05:33,275 --> 01:05:34,243
IMPORTANT TALK.

1602
01:05:34,243 --> 01:05:36,145
MY NAME IS DINA PALTOO.

1603
01:05:36,145 --> 01:05:40,983
I AM THE ACTING DEPUTY DIRECTOR 

1604
01:05:40,983 --> 01:05:43,319
OOF POLICY AND EXTERNAL AFFAIRS 

1605
01:05:43,319 --> 01:05:44,186
AT THE NATIONAL LIBRARY OF 

1606
01:05:44,186 --> 01:05:44,787
MEDICINE AT NIH.

1607
01:05:44,787 --> 01:05:47,089
I'M GOING TO BE MODERATING A FEW

1608
01:05:47,089 --> 01:05:48,490
QUESTIONS FROM OUR AUDIENCE.

1609
01:05:48,490 --> 01:05:50,459
I'D LIKE TO REMIND PARTICIPANTS 

1610
01:05:50,459 --> 01:05:52,728
THAT IF YOU DO HAVE A QUESTION 

1611
01:05:52,728 --> 01:05:57,700
FOR THIS Q&A SESSION TO PUT
THAT

1612
01:05:57,700 --> 01:06:00,903
IN THE SEND LIVE FEEDBACK BUTTON

1613
01:06:00,903 --> 01:06:02,004
ON THE SCREEN.

1614
01:06:02,004 --> 01:06:07,142
SO WE DO HAVE OUR FIRST 

1615
01:06:07,142 --> 01:06:09,178
QUESTION, WHICH WE'D REALLY LIKE

1616
01:06:09,178 --> 01:06:10,579
TO HEAR FROM YOU REGARDING SOME 

1617
01:06:10,579 --> 01:06:14,850
OF THESE PARTNERSHIPS AND HOW TO

1618
01:06:14,850 --> 01:06:16,952
DEVELOP AND LEVERAGE 

1619
01:06:16,952 --> 01:06:17,419
PARTNERSHIPS BETWEEN 

1620
01:06:17,419 --> 01:06:18,721
ORGANIZATIONS THAT HAVEN'T 

1621
01:06:18,721 --> 01:06:19,688
HISTORICALLY COLLABORATED 

1622
01:06:19,688 --> 01:06:21,690
TOGETHER ON HEALTH RESEARCH.

1623
01:06:21,690 --> 01:06:23,359
>> I THINK THAT'S A GOOD 

1624
01:06:23,359 --> 01:06:23,625
QUESTION.

1625
01:06:23,625 --> 01:06:26,428
I THINK ONE OF THE THINGS THAT, 

1626
01:06:26,428 --> 01:06:28,130
YOU KNOW, MAKES FOR A GOOD 

1627
01:06:28,130 --> 01:06:30,099
COLLABORATION IS RELATIONSHIP.

1628
01:06:30,099 --> 01:06:30,299
RIGHT?

1629
01:06:30,299 --> 01:06:33,635
AND SOMETIMES THOSE 

1630
01:06:33,635 --> 01:06:34,670
RELATIONSHIPS ARE, YOU KNOW, 

1631
01:06:34,670 --> 01:06:35,904
HARD TO INITIATE.

1632
01:06:35,904 --> 01:06:38,907
I THINK WHAT MADE THIS IS A GOOD

1633
01:06:38,907 --> 01:06:40,342
COLLABORATION FOR ME WHILE I'M 

1634
01:06:40,342 --> 01:06:42,111
AT SPELMAN IS THAT MY 

1635
01:06:42,111 --> 01:06:44,413
COLLEAGUES, I HAVE WORKED WITH 

1636
01:06:44,413 --> 01:06:46,348
MY COLLEAGUES AT INDIANA 

1637
01:06:46,348 --> 01:06:49,017
UNIVERSITY FOR 14 YEARS AND I 

1638
01:06:49,017 --> 01:06:52,388
ALSO HAD COLLEAGUES AND HAD 

1639
01:06:52,388 --> 01:06:53,455
COLLABORATED PREVIOUSLY WITH 

1640
01:06:53,455 --> 01:06:57,159
PROFESSORS AT PURDUE.

1641
01:06:57,159 --> 01:06:58,994
I HAD RELATIONSHIPS, PROBABLY 

1642
01:06:58,994 --> 01:07:00,429
WITH THE PROFESSOR FROM DUKE.

1643
01:07:00,429 --> 01:07:03,065
AND SO I THINK IT'S ALL ABOUT 

1644
01:07:03,065 --> 01:07:05,234
THE RELATIONSHIP AND I THINK 

1645
01:07:05,234 --> 01:07:11,206
ALSO YOU HAVE TO HAVE A MINDSET 

1646
01:07:11,206 --> 01:07:12,975
WHERE YOU UNDERSTAND THAT A 

1647
01:07:12,975 --> 01:07:16,412
PROBLEM -- YOU CANNOT EXPLORE A 

1648
01:07:16,412 --> 01:07:18,180
PROBLEM IN THE VACUUM AND YOU 

1649
01:07:18,180 --> 01:07:20,249
NEED TO TAKE A MULTIDISCIPLINARY

1650
01:07:20,249 --> 01:07:22,284
APPROACH TO PROBLEM SOLVING.

1651
01:07:22,284 --> 01:07:25,387
EVEN AS I PREPARE TO GIVE THIS 

1652
01:07:25,387 --> 01:07:26,388
CONVERSATION AND THIS 

1653
01:07:26,388 --> 01:07:27,356
PRESENTATION TO A MEDICAL 

1654
01:07:27,356 --> 01:07:29,925
OFFICE, I NEEDED TO UNDERSTAND 

1655
01:07:29,925 --> 01:07:31,627
WHAT WAS THE MEDICAL RESEARCH 

1656
01:07:31,627 --> 01:07:32,294
SAYING?

1657
01:07:32,294 --> 01:07:33,195
AND BASICALLY WHAT THE MEDICAL 

1658
01:07:33,195 --> 01:07:35,631
RESEARCH WAS SAYING IS THAT WE 

1659
01:07:35,631 --> 01:07:36,098
NEED DATA.

1660
01:07:36,098 --> 01:07:37,833
YOU KNOW, AND THERE'S DATA THAT 

1661
01:07:37,833 --> 01:07:39,334
WE ARE LEAVING OUT.

1662
01:07:39,334 --> 01:07:40,869
AND THAT IT IS IMPORTANT FOR US 

1663
01:07:40,869 --> 01:07:42,204
TO HAVE THIS DATA AND IF WE 

1664
01:07:42,204 --> 01:07:44,206
DON'T HAVE THIS DATA, WE WILL 

1665
01:07:44,206 --> 01:07:47,176
NOT BE ABLE TO MAKE ADVANCES 

1666
01:07:47,176 --> 01:07:49,578
TOWARDS REDUCING THOSE HEALTH 

1667
01:07:49,578 --> 01:07:49,878
DISPARITIES.

1668
01:07:49,878 --> 01:07:52,214
SO I THINK YOU HAVE TO TAKE A 

1669
01:07:52,214 --> 01:07:53,482
MULTIDISCIPLINARY APPROACH.

1670
01:07:53,482 --> 01:07:56,852
YOU HAVE TO BUILD RELATIONSHIP 

1671
01:07:56,852 --> 01:07:58,253
AND THAT'S HOW THIS TYPE OF WORK

1672
01:07:58,253 --> 01:08:01,723
GETS DONE.

1673
01:08:01,723 --> 01:08:02,024
>> GREAT.

1674
01:08:02,024 --> 01:08:12,334
THANK YOU SO MUCH.

1675
01:08:12,334 --> 01:08:13,902
ANOTHER QUESTION, WOULD YOU BE 

1676
01:08:13,902 --> 01:08:15,537
ABLE TO ELABORATE ON THE 

1677
01:08:15,537 --> 01:08:16,672
TENSIONS BETWEEN PRIVACY AND 

1678
01:08:16,672 --> 01:08:16,972
DATA ACCESS?

1679
01:08:16,972 --> 01:08:21,477
>> YES.

1680
01:08:21,477 --> 01:08:23,245
DEFINITELY THERE IS A LOT OF 

1681
01:08:23,245 --> 01:08:23,979
TENSION THERE.

1682
01:08:23,979 --> 01:08:26,982
AND THAT IS WHY HAVING AN 

1683
01:08:26,982 --> 01:08:29,218
INFRASTRUCTURE THAT ALLOWS 

1684
01:08:29,218 --> 01:08:31,353
COMPUTATIONAL DATA IN A 

1685
01:08:31,353 --> 01:08:32,788
CONFIDENTIAL MANNER BECOMES 

1686
01:08:32,788 --> 01:08:33,255
VERY, VERY IMPORTANT.

1687
01:08:33,255 --> 01:08:36,124
BECAUSE WITH REGARDS TO THE DATA

1688
01:08:36,124 --> 01:08:37,426
SHARING, PEOPLE HAVE ACTUALLY 

1689
01:08:37,426 --> 01:08:40,562
PUT A LOT OF TIME AND EFFORT AND

1690
01:08:40,562 --> 01:08:44,566
MONEY INTO ACTUALLY COLLECTING 

1691
01:08:44,566 --> 01:08:48,904
AND MANAGING THEIR DATA.

1692
01:08:48,904 --> 01:08:51,039
THEY HAVE ESTABLISHED AGREEMENTS

1693
01:08:51,039 --> 01:08:52,975
WITH PARTICIPANTS THAT THEY WILL

1694
01:08:52,975 --> 01:08:57,746
PRESERVE THE PRIVACY OF THOSE 

1695
01:08:57,746 --> 01:08:59,448
RECORDS AND SO THIS IS THE 

1696
01:08:59,448 --> 01:08:59,915
TENSION THERE.

1697
01:08:59,915 --> 01:09:01,917
AND ALSO WHEN YOU GO BEYOND 

1698
01:09:01,917 --> 01:09:05,687
THINGS LIKE THE GREATER GOOD OF,

1699
01:09:05,687 --> 01:09:07,756
YOU KNOW, MEDICAL RESEARCH AND 

1700
01:09:07,756 --> 01:09:09,858
YOU HAVE COMPANIES AND 

1701
01:09:09,858 --> 01:09:12,060
ORGANIZATIONS, FOR EXAMPLE, WHO 

1702
01:09:12,060 --> 01:09:16,064
HAVE PROPRIETARY INFORMATION, 

1703
01:09:16,064 --> 01:09:19,434
THEY MAY BENEFIT FROM, YOU KNOW,

1704
01:09:19,434 --> 01:09:23,071
UNDERSTANDING THE PATTERNS FOR, 

1705
01:09:23,071 --> 01:09:23,939
YOU KNOW, EXAMPLE THEFT.

1706
01:09:23,939 --> 01:09:26,775
IF WE LOOK AT PHARMACIES, FOR 

1707
01:09:26,775 --> 01:09:27,109
EXAMPLE.

1708
01:09:27,109 --> 01:09:29,344
WHERE THERE MAY BE THEFT GOING 

1709
01:09:29,344 --> 01:09:31,413
ON IN PHARMACEUTICAL ENTITIES 

1710
01:09:31,413 --> 01:09:32,981
LIKE THE DRUGSTORES AND 

1711
01:09:32,981 --> 01:09:35,984
EVERYTHING LIKE THAT.

1712
01:09:35,984 --> 01:09:38,954
IF THESE FARMERS ACTUALLY SHARED

1713
01:09:38,954 --> 01:09:40,022
INFORMATION, THEY COULD PROBABLY

1714
01:09:40,022 --> 01:09:41,957
IDENTIFY CULPRITS MORE QUICKLY.

1715
01:09:41,957 --> 01:09:44,560
THERE IS A CONCERN BY DOING THIS

1716
01:09:44,560 --> 01:09:46,328
SHARING, THEY ARE MAKING 

1717
01:09:46,328 --> 01:09:48,096
THEMSELVES VULNERABLE AND IT 

1718
01:09:48,096 --> 01:09:49,932
COULD NEGATIVELY IMPACT THEM.

1719
01:09:49,932 --> 01:09:52,200
SO HOW DO WE ADDRESS AND 

1720
01:09:52,200 --> 01:09:53,168
MINIMIZE THAT RISK?

1721
01:09:53,168 --> 01:09:55,704
WHAT IF YOU COULD BENEFIT FROM 

1722
01:09:55,704 --> 01:09:57,539
THE COMPUTATION OF AGGREGATED 

1723
01:09:57,539 --> 01:09:59,775
DATA ACROSS PHARMACIES, BUT THE 

1724
01:09:59,775 --> 01:10:01,944
OTHER PHARMACIES NEVER GET 

1725
01:10:01,944 --> 01:10:03,211
ACCESS TO YOUR DATA?

1726
01:10:03,211 --> 01:10:05,447
SO THIS IS WHAT WE ARE TRYING TO

1727
01:10:05,447 --> 01:10:05,747
PROVIDE.

1728
01:10:05,747 --> 01:10:07,683
IF YOU CAN'T REDUCE THE RISK FOR

1729
01:10:07,683 --> 01:10:12,988
THOSE ENTITIES, THERE IS THAT 

1730
01:10:12,988 --> 01:10:15,757
ISSUE OF, HEY, HOW DO I PROTECT 

1731
01:10:15,757 --> 01:10:17,693
MYSELF AND WILL THIS -- IS THE 

1732
01:10:17,693 --> 01:10:19,328
RISK TOO HIGH IN ORDER TO ENGAGE

1733
01:10:19,328 --> 01:10:20,829
IN THAT MANNER?

1734
01:10:20,829 --> 01:10:23,699
IF WE CAN LOWER THAT RISK FOR 

1735
01:10:23,699 --> 01:10:26,001
ENTITIES, THEN YOU COULD HAVE 

1736
01:10:26,001 --> 01:10:27,569
MORE COMPUTATION ON THE 

1737
01:10:27,569 --> 01:10:28,737
AGGREGATE OF THE DATA.

1738
01:10:28,737 --> 01:10:30,572
WE COULD HAVE A CONFIDENTIAL 

1739
01:10:30,572 --> 01:10:31,506
COLLABORATION THAT I TALKED 

1740
01:10:31,506 --> 01:10:34,776
ABOUT EARLIER.

1741
01:10:34,776 --> 01:10:36,445
>> GREAT.

1742
01:10:36,445 --> 01:10:37,846
THANK YOU.

1743
01:10:37,846 --> 01:10:39,414
AND ANOTHER QUESTION.

1744
01:10:39,414 --> 01:10:41,750
HOW CAN WE IMPROVE DATA LITERACY

1745
01:10:41,750 --> 01:10:43,752
AMONG BIOMEDICAL RESEARCHERS TO 

1746
01:10:43,752 --> 01:10:45,854
ENSURE EFFECTIVE INTEGRATION OF 

1747
01:10:45,854 --> 01:10:48,957
DATA, SCIENCE, AND WOMEN'S 

1748
01:10:48,957 --> 01:10:50,158
HEALTH RESEARCH?

1749
01:10:50,158 --> 01:10:55,797
>> I THINK, I MEAN, THIS
IS AN 

1750
01:10:55,797 --> 01:10:57,099
INTERESTING -- THIS IS A VERY 

1751
01:10:57,099 --> 01:10:57,866
INTERESTING QUESTION.

1752
01:10:57,866 --> 01:11:00,469
AND I THINK, YOU KNOW, I THINK 

1753
01:11:00,469 --> 01:11:02,070
SPELMAN TAKES A GOOD APPROACH AT

1754
01:11:02,070 --> 01:11:05,540
THIS.

1755
01:11:05,540 --> 01:11:08,076
EVERY STUDENT ON SPELMAN'S 

1756
01:11:08,076 --> 01:11:10,512
CAMPUS, REGARDLESS IF THEY ARE 

1757
01:11:10,512 --> 01:11:13,982
STEM OR NON-STEM, THEY HAVE A 

1758
01:11:13,982 --> 01:11:15,150
DATA LITERACY REQUIREMENT.

1759
01:11:15,150 --> 01:11:17,819
I MEAN, A DIGITAL LITERACY 

1760
01:11:17,819 --> 01:11:18,120
REQUIREMENT.

1761
01:11:18,120 --> 01:11:20,856
WE ARE EVOLVING THE CURRICULUM 

1762
01:11:20,856 --> 01:11:23,792
TO ENSURE THAT DIGITAL LITERACY 

1763
01:11:23,792 --> 01:11:25,594
INVOLVES DATA LITERACY ALSO.

1764
01:11:25,594 --> 01:11:31,767
SO EVEN FOR OUR NON-STEM 

1765
01:11:31,767 --> 01:11:34,169
SKROERS, WHICH HAVE A DIGITAL 

1766
01:11:34,169 --> 01:11:39,474
LITERACY COMPONENT, WE HAVE 

1767
01:11:39,474 --> 01:11:40,976
INCORPORATED DATA SCIENCE INTO 

1768
01:11:40,976 --> 01:11:42,811
THAT INTRODUCTORY COURSE SO 

1769
01:11:42,811 --> 01:11:45,681
STUDENTS MEET THE LEARNING 

1770
01:11:45,681 --> 01:11:47,716
OBJECTIVE OF BEING ABLE TO TELL 

1771
01:11:47,716 --> 01:11:50,218
A STORY WITH THEIR DATA.

1772
01:11:50,218 --> 01:11:53,555
NON-STEM MAJORS ARE USING PYTHON

1773
01:11:53,555 --> 01:11:53,855
PROGRAMMING.

1774
01:11:53,855 --> 01:11:56,725
WE HAVE INCORPORATED PART OF 

1775
01:11:56,725 --> 01:11:58,760
BERKELEY'S DATA 8 MODULE INTO 

1776
01:11:58,760 --> 01:12:00,228
THAT COURSE AND WE HAVE MET THE 

1777
01:12:00,228 --> 01:12:04,599
STUDENTS WHERE THEY ARE SO THAT 

1778
01:12:04,599 --> 01:12:06,802
THEY CAN UNDERSTAND AND WALK 

1779
01:12:06,802 --> 01:12:07,936
AWAY WITH TANGIBLE SKILLS.

1780
01:12:07,936 --> 01:12:10,138
SO I THINK THAT THE IMPORTANT 

1781
01:12:10,138 --> 01:12:11,740
PART IN THAT STORY IS MEETING 

1782
01:12:11,740 --> 01:12:14,843
THE STUDENTS WHERE THEY ARE.

1783
01:12:14,843 --> 01:12:17,012
THOSE STUDENTS, THEY DON'T HAVE 

1784
01:12:17,012 --> 01:12:21,316
TO LEARN EVERYTHING ABOUT PYTHON

1785
01:12:21,316 --> 01:12:22,684
PROGRAMMING, BUT WE CAN PROVIDE 

1786
01:12:22,684 --> 01:12:23,585
THEM WITH A SUFFICIENT 

1787
01:12:23,585 --> 01:12:25,987
FOUNDATION THAT THEY CAN WALK 

1788
01:12:25,987 --> 01:12:28,056
AWAY FROM ONE COURSE WITH THIS 

1789
01:12:28,056 --> 01:12:29,791
MODULE IN IT AND BE ABLE TO TELL

1790
01:12:29,791 --> 01:12:31,493
A STORY WITH DATA.

1791
01:12:31,493 --> 01:12:33,995
AND I THINK THAT'S THE IMPORTANT

1792
01:12:33,995 --> 01:12:38,667
PART OF THAT.

1793
01:12:38,667 --> 01:12:39,568
>> THANK YOU.

1794
01:12:39,568 --> 01:12:41,937
HAVE YOU FOUND THAT ANY STUDENTS

1795
01:12:41,937 --> 01:12:45,107
HAVE GONE INTO THE FIELD OF DATA

1796
01:12:45,107 --> 01:12:46,575
AFTER TAKING THE DATA LITERACY 

1797
01:12:46,575 --> 01:12:48,176
COURSES?

1798
01:12:48,176 --> 01:12:52,581
>> AND THE INTERESTING
THING IS,

1799
01:12:52,581 --> 01:12:55,550
I HAVE FOUND THAT I HAVE HAD 

1800
01:12:55,550 --> 01:12:56,818
STUDENTS WHO WERE NON-STEM 

1801
01:12:56,818 --> 01:12:59,154
MAJORS WHO TOOK THE DIGITAL 

1802
01:12:59,154 --> 01:13:01,123
LITERACY COURSE FOR NON-STEM 

1803
01:13:01,123 --> 01:13:02,824
MAJORS AND CHANGED THEIR MAJOR.

1804
01:13:02,824 --> 01:13:05,327
THEY CHANGE THEIR MAJOR TO 

1805
01:13:05,327 --> 01:13:06,528
COMPUTER SCIENCE AND THEY WANTED

1806
01:13:06,528 --> 01:13:11,533
TO FOCUS MORE ON THE ANALYTICS 

1807
01:13:11,533 --> 01:13:13,668
PART AND ALGORITHMIC THINKING 

1808
01:13:13,668 --> 01:13:21,076
PART OF THEIR EDUCATION OR THEY 

1809
01:13:21,076 --> 01:13:21,710
DECIDED TO MINOR, YOU KNOW, IN 

1810
01:13:21,710 --> 01:13:22,110
COMPUTER SCIENCE.

1811
01:13:22,110 --> 01:13:30,886
AND SO WE ALSO HAVE A DATA 

1812
01:13:30,886 --> 01:13:31,486
SCIENCE MINOR HERE AT SPELMAN.

1813
01:13:31,486 --> 01:13:32,087
IT IS SOMETHING THAT STUDENTS 

1814
01:13:32,087 --> 01:13:32,721
ARE REALLY DEVELOPING INTEREST 

1815
01:13:32,721 --> 01:13:32,888
IN.

1816
01:13:32,888 --> 01:13:33,421
WE ARE BUILDING OUT THAT 

1817
01:13:33,421 --> 01:13:34,055
CURRICULUM AND SO I EXPECT TO 

1818
01:13:34,055 --> 01:13:36,892
SEE MORE OF THAT ACROSS THE 

1819
01:13:36,892 --> 01:13:37,125
CAMPUS.

1820
01:13:37,125 --> 01:13:38,827
AND NOT JUST, YOU KNOW, IN 

1821
01:13:38,827 --> 01:13:40,796
COMPUTER SCIENCE.

1822
01:13:40,796 --> 01:13:42,197
>> GREAT.

1823
01:13:42,197 --> 01:13:42,898
THANK YOU.

1824
01:13:42,898 --> 01:13:43,298
ANOTHER QUESTION.

1825
01:13:43,298 --> 01:13:45,901
SO WE'D LIKE TO -- THE PERSON 

1826
01:13:45,901 --> 01:13:48,370
ASKING THE QUESTION WANTS TO 

1827
01:13:48,370 --> 01:13:49,805
THANK YOU FOR YOUR WORK AND 

1828
01:13:49,805 --> 01:13:50,605
ENLIGHTNING TALK.

1829
01:13:50,605 --> 01:13:52,974
THE QUESTION IS, TO WHAT EXTENT 

1830
01:13:52,974 --> 01:13:56,411
ARE FEDERALLY MANAGED DATA 

1831
01:13:56,411 --> 01:13:58,280
ENCLAVES, THE ONES YOU 

1832
01:13:58,280 --> 01:14:00,982
DESCRIBED, CONNECTING WITH 

1833
01:14:00,982 --> 01:14:03,285
STATEWIDE IDENTIFIABLE 

1834
01:14:03,285 --> 01:14:03,819
STAKEHOLDERS?

1835
01:14:03,819 --> 01:14:05,053
>> THAT IS A QUESTION THAT
I 

1836
01:14:05,053 --> 01:14:10,592
DON'T KNOW THE ANSWER TO.

1837
01:14:10,592 --> 01:14:13,895
WITH REGARDS TO THE FEDERAL 

1838
01:14:13,895 --> 01:14:16,965
MANAGED DATA ENCLAVES AND 

1839
01:14:16,965 --> 01:14:20,569
CONNECTING WITH THE STATE.

1840
01:14:20,569 --> 01:14:25,373
I KNOW THAT IN INDIANA, I WORKED

1841
01:14:25,373 --> 01:14:26,675
AT INDIANA FOR 14 YEARS.

1842
01:14:26,675 --> 01:14:29,544
THERE WAS A STRONG RELATIONSHIP,

1843
01:14:29,544 --> 01:14:31,479
YOU KNOW, WITHIN THE STATE AND 

1844
01:14:31,479 --> 01:14:33,515
WITH THE DATA HELD BY THE STATE,

1845
01:14:33,515 --> 01:14:34,883
BUT I DON'T KNOW THE 

1846
01:14:34,883 --> 01:14:35,884
RELATIONSHIP BETWEEN THE STATE 

1847
01:14:35,884 --> 01:14:38,053
AND THE FEDERAL.

1848
01:14:38,053 --> 01:14:40,655
I KNOW THAT THERE WERE WORKING 

1849
01:14:40,655 --> 01:14:43,425
RELATIONSHIPS THAT WE HAVE AT 

1850
01:14:43,425 --> 01:14:46,728
INDIANA UNIVERSITY, YOU KNOW, 

1851
01:14:46,728 --> 01:14:48,930
WITH THE STATE DATA HOLDERS AND 

1852
01:14:48,930 --> 01:14:50,665
BEING ABLE TO ACCESS DATA AND 

1853
01:14:50,665 --> 01:14:51,666
THINGS OF THAT NATURE.

1854
01:14:51,666 --> 01:14:53,735
AS IT GOES TO THE FEDERAL LEVEL,

1855
01:14:53,735 --> 01:14:54,502
I'M NOT SURE.

1856
01:14:54,502 --> 01:14:55,403
>> YEAH.

1857
01:14:55,403 --> 01:14:55,837
MAKES SENSE.

1858
01:14:55,837 --> 01:14:58,039
I KNOW ONE OF THE THE SLIDES 

1859
01:14:58,039 --> 01:15:00,876
THAT YOU SKIPPED OVER WAS A 

1860
01:15:00,876 --> 01:15:08,783
LARGE LANGUAGE MODEL USE CASE.

1861
01:15:08,783 --> 01:15:09,417
SO WE WERE WONDERING IF YOU HAVE

1862
01:15:09,417 --> 01:15:10,051
ANY THOUGHTS OR INFO THAT YOU'D 

1863
01:15:10,051 --> 01:15:10,685
LIKE TO SHARE ON LLMs OR AI?

1864
01:15:10,685 --> 01:15:11,887
>> OKAY.

1865
01:15:11,887 --> 01:15:13,688
SO LET'S WITH REGARDS TO THE 

1866
01:15:13,688 --> 01:15:15,490
LARGE LANGUAGE MODEL AND I THINK

1867
01:15:15,490 --> 01:15:19,961
IT HAD SOMETHING TO DO WITH THAT

1868
01:15:19,961 --> 01:15:20,829
PARTICULAR SLIDE.

1869
01:15:20,829 --> 01:15:23,331
I HAVE IT OPEN ON MY SCREEN SO I

1870
01:15:23,331 --> 01:15:26,701
WILL TAKE A LOOK AT THAT 

1871
01:15:26,701 --> 01:15:30,772
PARTICULAR SLIDE SO I CAN SEE 

1872
01:15:30,772 --> 01:15:32,774
WHAT THAT PARTICULAR USE CASE.

1873
01:15:32,774 --> 01:15:35,777
SO I THINK IT WAS SAYING 

1874
01:15:35,777 --> 01:15:37,212
CLINICAL SUMMARY GENERATION.

1875
01:15:37,212 --> 01:15:38,713
AND SO, OKAY.

1876
01:15:38,713 --> 01:15:49,157
THAT GETS ME BACK TO THE 

1877
01:16:01,169 --> 01:16:02,704
INFORMATION PRODUCED BY THE 

1878
01:16:02,704 --> 01:16:04,205
LARGE LANGUAGE MODEL DEPENDS ON 

1879
01:16:04,205 --> 01:16:07,375
THE QUALITY OF THE TRAINING 

1880
01:16:07,375 --> 01:16:08,143
DATA.

1881
01:16:08,143 --> 01:16:14,416
SO THERE CAN BE INFORMATION THAT

1882
01:16:14,416 --> 01:16:15,984
THE MODEL WAS TRAINED ON THAT 

1883
01:16:15,984 --> 01:16:17,285
MAY BE INACCURATE.

1884
01:16:17,285 --> 01:16:20,956
SO LET'S SAY YOU PUT IN A LOT OF

1885
01:16:20,956 --> 01:16:23,024
RESEARCH DATA AND MAYBE SOME 

1886
01:16:23,024 --> 01:16:25,293
RESEARCH DATA, FOR EXAMPLE, FROM

1887
01:16:25,293 --> 01:16:28,630
SOME STUDY IT HAS BEEN LATER 

1888
01:16:28,630 --> 01:16:29,464
DISCOUNTED, BUT SOMEHOW IT GOT 

1889
01:16:29,464 --> 01:16:32,968
IN THE MODEL.

1890
01:16:32,968 --> 01:16:37,572
YOU MAY QUERY THAT MODEL AND 

1891
01:16:37,572 --> 01:16:40,408
SOME OF THE RESULTS MAY BE BASED

1892
01:16:40,408 --> 01:16:42,911
ON SOME STUDY THAT IT HAS NOW 

1893
01:16:42,911 --> 01:16:44,179
BEEN DETERMINED THE RESULTS WERE

1894
01:16:44,179 --> 01:16:45,080
NOT ACCURATE.

1895
01:16:45,080 --> 01:16:47,415
BUT IT'S THERE.

1896
01:16:47,415 --> 01:16:49,684
SO WHAT I WAS SAYING ABOUT THE 

1897
01:16:49,684 --> 01:16:51,152
LARGE LANGUAGE MODEL IS THAT, 

1898
01:16:51,152 --> 01:16:52,921
YOU KNOW, YOU CAN'T REPLACE THE 

1899
01:16:52,921 --> 01:16:54,589
HUMAN WITH THE LARGE LANGUAGE 

1900
01:16:54,589 --> 01:16:54,789
MODEL.

1901
01:16:54,789 --> 01:16:57,559
THAT THERE NEEDS TO BE, YOU 

1902
01:16:57,559 --> 01:16:58,827
KNOW, HUMAN OVERSIGHT.

1903
01:16:58,827 --> 01:17:00,996
THE HUMAN HAS TO ALWAYS REMAIN 

1904
01:17:00,996 --> 01:17:03,031
IN THE LOOP, RIGHT?

1905
01:17:03,031 --> 01:17:07,469
IT DOES NOT REPLACE THE 

1906
01:17:07,469 --> 01:17:10,205
DEVELOPMENT OF FOUNDATIONAL 

1907
01:17:10,205 --> 01:17:11,539
SKILLS AND KNOWLEDGE.

1908
01:17:11,539 --> 01:17:13,742
AND SO YOU NEED THOSE 

1909
01:17:13,742 --> 01:17:14,609
FOUNDATIONAL SKILLS AND 

1910
01:17:14,609 --> 01:17:17,479
KNOWLEDGE TO BE ABLE TO ASSESS 

1911
01:17:17,479 --> 01:17:20,415
THE ACCURACY AND THE 

1912
01:17:20,415 --> 01:17:22,117
TRUTHFULNESS OF WHAT IS BEING 

1913
01:17:22,117 --> 01:17:24,152
PRODUCED BY THOSE MODELS.

1914
01:17:24,152 --> 01:17:25,854
IF YOU DON'T HAVE THAT 

1915
01:17:25,854 --> 01:17:28,690
FOUNDATIONAL KNOWLEDGE, THEN YOU

1916
01:17:28,690 --> 01:17:32,961
ARE VULNERABLE TO BELIEVING 

1917
01:17:32,961 --> 01:17:34,929
EVERYTHING THAT IS PRODUCED AND 

1918
01:17:34,929 --> 01:17:35,864
UNDERSTAND THAT, YOU KNOW, THERE

1919
01:17:35,864 --> 01:17:46,408
CAN BE INAK  -- INACCURACIES IN 

1920
01:17:47,008 --> 01:17:48,676
THE TRAINING DATA.

1921
01:17:48,676 --> 01:17:51,413
YOU WILL NOT BE ABLE TO IDENTIFY

1922
01:17:51,413 --> 01:17:53,481
AND ASSESS AND UNDERSTAND HOW TO

1923
01:17:53,481 --> 01:17:54,315
USE THAT INFORMATION.

1924
01:17:54,315 --> 01:17:56,484
>> MAKES COMPLETE SENSE.

1925
01:17:56,484 --> 01:17:58,553
WE ALSO WANTED TO GO BACK.

1926
01:17:58,553 --> 01:18:00,321
YOU MENTIONED EARLIER IN YOUR 

1927
01:18:00,321 --> 01:18:02,957
PRESENTATION ABOUT TRUST.

1928
01:18:02,957 --> 01:18:05,260
HOW DO YOU FEEL DATA SCIENTISTS 

1929
01:18:05,260 --> 01:18:07,962
CAN ENGAGE THE TRUST OF THE 

1930
01:18:07,962 --> 01:18:10,165
PUBLIC IN USING SOME OF THESE 

1931
01:18:10,165 --> 01:18:11,232
TOOLS AND METHODS AND 

1932
01:18:11,232 --> 01:18:11,566
APPLICATIONS?

1933
01:18:11,566 --> 01:18:16,004
IS 

1934
01:18:16,004 --> 01:18:17,539
>> I THINK THAT -- AND
WHEN YOU 

1935
01:18:17,539 --> 01:18:18,907
ARE TALKING ABOUT THE TOOLS, ARE

1936
01:18:18,907 --> 01:18:21,776
YOU TALKING ABOUT THE TOOLS OF A

1937
01:18:21,776 --> 01:18:23,445
TRUSTED COMPUTING INFRASTRUCTURE

1938
01:18:23,445 --> 01:18:27,582
OR ARE YOU TALKING ABOUT JUST 

1939
01:18:27,582 --> 01:18:29,784
DATA ANALYSIS AND CONVINCING AN 

1940
01:18:29,784 --> 01:18:33,288
INDIVIDUAL TO BE A PART OF THE 

1941
01:18:33,288 --> 01:18:33,488
STUDY?

1942
01:18:33,488 --> 01:18:35,056
>> THE FORMER.

1943
01:18:35,056 --> 01:18:36,958
OKAY.

1944
01:18:36,958 --> 01:18:37,759
THE FORMER.

1945
01:18:37,759 --> 01:18:39,961
SO ONE OF THE THINGS WE ARE 

1946
01:18:39,961 --> 01:18:41,362
LOOKING AT AS A PART OF THIS 

1947
01:18:41,362 --> 01:18:43,865
RESEARCH WE ARE DOING IS THE 

1948
01:18:43,865 --> 01:18:45,834
PUBLIC'S PERCEPTION ON WHAT IS 

1949
01:18:45,834 --> 01:18:48,636
TRUSTED AND TRUSTWORTHY.

1950
01:18:48,636 --> 01:18:51,072
AND WHAT WE ARE FINDING IS THAT,

1951
01:18:51,072 --> 01:18:52,974
YOU KNOW, IT IS NOT SO IMPORTANT

1952
01:18:52,974 --> 01:18:56,611
THAT THEY UNDERSTAND ALL OF THE 

1953
01:18:56,611 --> 01:19:00,982
DETAILS OF HOW THIS WORKS.

1954
01:19:00,982 --> 01:19:03,251
BUT THEY NEED TO HAVE, YOU KNOW,

1955
01:19:03,251 --> 01:19:04,953
SOME BASIC UNDERSTANDING OF WHAT

1956
01:19:04,953 --> 01:19:08,022
IS POSSIBLE AND WHAT IS NOT 

1957
01:19:08,022 --> 01:19:10,692
POSSIBLE AND WHERE THE RISKS ARE

1958
01:19:10,692 --> 01:19:12,961
WITH REGARD TO THE USE.

1959
01:19:12,961 --> 01:19:16,297
AND SO I THINK THAT, YOU KNOW, 

1960
01:19:16,297 --> 01:19:20,101
WITH THAT LEVEL OF EXPLANATION 

1961
01:19:20,101 --> 01:19:23,371
THEN INDIVIDUALS WILL BE ABLE TO

1962
01:19:23,371 --> 01:19:24,973
UNDERSTAND THAT, YOU KNOW, THIS 

1963
01:19:24,973 --> 01:19:25,740
IS TRUSTWORTHY.

1964
01:19:25,740 --> 01:19:27,809
BECAUSE WHEN I TALK ABOUT A 

1965
01:19:27,809 --> 01:19:29,344
TRUSTED EXECUTION ENVIRONMENT 

1966
01:19:29,344 --> 01:19:33,581
AND THE FACT THAT WITH CERTAIN 

1967
01:19:33,581 --> 01:19:34,916
TECHNIQUES, EVEN THE OPERATING 

1968
01:19:34,916 --> 01:19:36,584
SYSTEM AND I'M JUST GOING TO GO 

1969
01:19:36,584 --> 01:19:39,387
INTO TEACHER MODE FOR JUST ONE 

1970
01:19:39,387 --> 01:19:39,687
SECOND.

1971
01:19:39,687 --> 01:19:42,290
THE OPERATING SYSTEM BASICALLY 

1972
01:19:42,290 --> 01:19:45,093
MANAGES ALL RESOURCES ON YOUR 

1973
01:19:45,093 --> 01:19:45,426
COMPUTER.

1974
01:19:45,426 --> 01:19:46,194
RIGHT?

1975
01:19:46,194 --> 01:19:48,830
I'M TALKING ABOUT ACCESS TO ALL 

1976
01:19:48,830 --> 01:19:49,898
HARDWARE AND EVERYTHING ELSE.

1977
01:19:49,898 --> 01:19:52,667
SO WHEN I TELL YOU THAT THERE IS

1978
01:19:52,667 --> 01:19:55,003
A CENTRAL PROCESSING UNIT, A 

1979
01:19:55,003 --> 01:19:57,438
COMPONENT OF HARDWARE THAT THE 

1980
01:19:57,438 --> 01:20:00,074
OPERATING SYSTEM WILL MANAGE 

1981
01:20:00,074 --> 01:20:01,976
ACCESS TO, CAN PREVENT THE 

1982
01:20:01,976 --> 01:20:04,012
OPERATING SYSTEM FROM ACCESSING 

1983
01:20:04,012 --> 01:20:08,650
DATA IN AN UNENCRYPTED STATE.

1984
01:20:08,650 --> 01:20:09,984
THAT SPEAKS VOLUMES ABOUT HOW 

1985
01:20:09,984 --> 01:20:14,155
THE TECHNOLOGY HAS EVOLVED TO 

1986
01:20:14,155 --> 01:20:16,024
GIVE US A GENERAL PURPOSE 

1987
01:20:16,024 --> 01:20:17,859
PLATFORM FOR DOING TRUSTED 

1988
01:20:17,859 --> 01:20:18,459
COMPUTATION.

1989
01:20:18,459 --> 01:20:20,195
AND LIKE I SAID, YOU KNOW, WHEN 

1990
01:20:20,195 --> 01:20:24,799
I STARTED LOOKING AT TRUSTED 

1991
01:20:24,799 --> 01:20:26,668
COMPUTING BACK IN 2025, AND I 

1992
01:20:26,668 --> 01:20:30,338
HAD A COLLABORATION WITH IBM AND

1993
01:20:30,338 --> 01:20:34,909
HAD SEVERAL CRYPTOGRAPHIC 

1994
01:20:34,909 --> 01:20:36,311
CO-PROCESSORS, THESE WERE 

1995
01:20:36,311 --> 01:20:37,946
SEPARATE ADAPTER CARDS THAT FIT 

1996
01:20:37,946 --> 01:20:39,514
INTO THE MOTHER BOARD OF A 

1997
01:20:39,514 --> 01:20:40,348
COMPUTER.

1998
01:20:40,348 --> 01:20:41,449
AND THEY DID THEIR COMPUTATION 

1999
01:20:41,449 --> 01:20:43,785
WITHIN THAT ADAPTER.

2000
01:20:43,785 --> 01:20:45,286
THE ADAPTER WAS PROTECTED.

2001
01:20:45,286 --> 01:20:49,490
IT HAD A METAL PLATING AND IT 

2002
01:20:49,490 --> 01:20:54,362
ALSO HAD INK IN THE -- AN INK 

2003
01:20:54,362 --> 01:20:56,264
LAYER SO IF YOU TRIED TO TAMPER 

2004
01:20:56,264 --> 01:20:57,832
WITH IT AND REMOVE THE CASING 

2005
01:20:57,832 --> 01:21:00,468
AND GET ACCESS TO THE 

2006
01:21:00,468 --> 01:21:11,112
CRYPTOGRAPH IC KEYS, IT WILL 

2007
01:21:11,312 --> 01:21:12,213
SELF-DESTRUCT AND WILL OVERWRITE

2008
01:21:12,213 --> 01:21:14,282
ALL THE KEYS.

2009
01:21:14,282 --> 01:21:17,252
NO ONE CAN GET ACCESS BECAUSE 

2010
01:21:17,252 --> 01:21:20,121
YOU WERE PHYSICALLY TRYING TO 

2011
01:21:20,121 --> 01:21:20,822
TAMPER.

2012
01:21:20,822 --> 01:21:22,957
WHAT INDUSTRY HAS DONE HAS 

2013
01:21:22,957 --> 01:21:26,594
EVOLVED THAT CRYPTOGRAPHIC 

2014
01:21:26,594 --> 01:21:28,263
CO-PROCESSOR AND MOVED THE 

2015
01:21:28,263 --> 01:21:29,564
FUNCTIONALITY UP A LEVEL.

2016
01:21:29,564 --> 01:21:31,866
YOU DON'T HAVE THE OVERRIDING OF

2017
01:21:31,866 --> 01:21:34,502
KEYS, BUT YOU, THE OPERATING 

2018
01:21:34,502 --> 01:21:37,739
SYSTEM IS NOT ABLE TO EVEN 

2019
01:21:37,739 --> 01:21:39,240
ACCESS IT.

2020
01:21:39,240 --> 01:21:41,576
SO OTHER USER APPLICATIONS WON'T

2021
01:21:41,576 --> 01:21:43,111
BE ABLE TO ACCESS THAT DATA IN 

2022
01:21:43,111 --> 01:21:50,318
AN UNPROTECTED, UNENCRYPTED 

2023
01:21:50,318 --> 01:21:50,652
STATE.

2024
01:21:50,652 --> 01:21:52,820
THESE ARE THE THINGS IF WE ARE 

2025
01:21:52,820 --> 01:21:54,455
EFFECTIVE IN THE WAY WE 

2026
01:21:54,455 --> 01:21:55,923
COMMUNICATE TO INDIVIDUALS AND 

2027
01:21:55,923 --> 01:21:56,991
NOT OVERLOAD THEM WITH 

2028
01:21:56,991 --> 01:21:58,359
INFORMATION SO THEY UNDERSTAND 

2029
01:21:58,359 --> 01:21:59,160
AT THAT LEVEL, YOU KNOW, THE 

2030
01:21:59,160 --> 01:22:01,296
LEVEL OF PROTECTION, I THINK 

2031
01:22:01,296 --> 01:22:01,929
THAT IS POSSIBLE.

2032
01:22:01,929 --> 01:22:07,435
BUT IT IS GOING TO TAKE SOMEONE 

2033
01:22:07,435 --> 01:22:10,038
WHO WORKS WITH HOW YOU PRESENT 

2034
01:22:10,038 --> 01:22:11,873
INFORMATION IN THE MOST 

2035
01:22:11,873 --> 01:22:13,174
EFFECTIVE AND EFFICIENT WAY TO 

2036
01:22:13,174 --> 01:22:13,841
ACTUALLY DO THAT.

2037
01:22:13,841 --> 01:22:16,477
YOU KNOW, YOU HAVE TO BE WORKING

2038
01:22:16,477 --> 01:22:19,714
IN THIS SPACE OF HUMAN CENTERED 

2039
01:22:19,714 --> 01:22:20,581
COMPUTING IN ORDER TO CONVEY 

2040
01:22:20,581 --> 01:22:21,816
THIS IN A WAY THAT INDIVIDUALS 

2041
01:22:21,816 --> 01:22:24,752
UNDERSTAND.

2042
01:22:24,752 --> 01:22:25,420
>> GREAT.

2043
01:22:25,420 --> 01:22:27,021
KIND OF A FOLLOW UP TO THAT 

2044
01:22:27,021 --> 01:22:27,288
QUESTION.

2045
01:22:27,288 --> 01:22:33,928
WE HAVE ONE MORE QUESTION THAT'S

2046
01:22:33,928 --> 01:22:37,031
COME IN BEFORE WE TAKE OUR 

2047
01:22:37,031 --> 01:22:38,299
BREAK.

2048
01:22:38,299 --> 01:22:39,934
WHAT DO YOU THINK THE GENERAL 

2049
01:22:39,934 --> 01:22:44,272
PUBLIC MISUNDERSTANDS ABOUT 

2050
01:22:44,272 --> 01:22:48,743
ACTION  -- AI.

2051
01:22:48,743 --> 01:22:52,013
HOW WOULD YOU HAVE THEM DO THAT 

2052
01:22:52,013 --> 01:22:55,616
IF THEY ARE NOT COMPUTER 

2053
01:22:55,616 --> 01:22:55,917
SCIENTISTS?

2054
01:22:55,917 --> 01:22:57,518
>> ONE THING THEY
MISUNDERSTAND 

2055
01:22:57,518 --> 01:22:59,454
IS AI IS ALL KNOWING.

2056
01:22:59,454 --> 01:23:00,988
DEFINITELY OUR STUDENTS AND I 

2057
01:23:00,988 --> 01:23:02,223
THINK THAT INDIVIDUALS, YOU 

2058
01:23:02,223 --> 01:23:07,729
KNOW, WHO ARE NOT STUDENTS THINK

2059
01:23:07,729 --> 01:23:09,964
THAT AI IS ALL KNOWING.

2060
01:23:09,964 --> 01:23:15,370
AI, WHAT IS ACTUALLY GENERATED 

2061
01:23:15,370 --> 01:23:16,871
IS BASICALLY DATA THAT IS 

2062
01:23:16,871 --> 01:23:19,607
DETERMINED FROM RELATIONSHIPS 

2063
01:23:19,607 --> 01:23:23,945
BETWEEN THE FEATURES THAT COME 

2064
01:23:23,945 --> 01:23:25,580
FROM THE DATA, RIGHT?

2065
01:23:25,580 --> 01:23:27,715
AS I SAID, IF THE DATA IS 

2066
01:23:27,715 --> 01:23:29,117
INACCURATE WHAT YOU ARE GOING TO

2067
01:23:29,117 --> 01:23:31,119
GET IS INACCURATE INFORMATION.

2068
01:23:31,119 --> 01:23:33,955
AND I THINK THAT IS THE CASE.

2069
01:23:33,955 --> 01:23:39,827
ALSO, YOU KNOW, AT THIS POINT I 

2070
01:23:39,827 --> 01:23:41,496
THINK THAT -- ESPECIALLY 

2071
01:23:41,496 --> 01:23:44,098
STUDENTS THINK THAT AI CAN SOLVE

2072
01:23:44,098 --> 01:23:46,901
ANY PROBLEM THEY ARE GIVEN IN AN

2073
01:23:46,901 --> 01:23:47,201
ASSIGNMENT.

2074
01:23:47,201 --> 01:23:49,604
AND THEY MAY THINK IT IS NOT 

2075
01:23:49,604 --> 01:23:51,406
NECESSARY TO BUILD THE SKILL.

2076
01:23:51,406 --> 01:23:54,075
I CAN JUST QUERY IT.

2077
01:23:54,075 --> 01:23:56,978
I CAN QUERY A LARGE LANGUAGE 

2078
01:23:56,978 --> 01:23:57,945
MODEL FOR THAT INFORMATION AND 

2079
01:23:57,945 --> 01:23:58,513
I'M DONE.

2080
01:23:58,513 --> 01:24:00,615
AND SO WHAT WE ARE TEACHING OUR 

2081
01:24:00,615 --> 01:24:04,952
STUDENTS IS THAT, OKAY, AS 

2082
01:24:04,952 --> 01:24:06,621
THERE'S AN IMPORTANCE FOR 

2083
01:24:06,621 --> 01:24:12,293
SCAFFOLDING SKILLS FOR YOU AND 

2084
01:24:12,293 --> 01:24:12,794
FOR YOU TO HAVE THIS 

2085
01:24:12,794 --> 01:24:13,761
FOUNDATIONAL UNDERSTANDING.

2086
01:24:13,761 --> 01:24:16,230
ONCE WE GIVE YOU A VERY COMPLEX 

2087
01:24:16,230 --> 01:24:17,632
PROBLEM YOU CAN GOING TO SEE THE

2088
01:24:17,632 --> 01:24:20,968
LIMITS AND BOUNDARIES OF WHAT 

2089
01:24:20,968 --> 01:24:22,804
OUR CURRENT LARGE LANGUAGE 

2090
01:24:22,804 --> 01:24:23,571
MODELS CAN DO.

2091
01:24:23,571 --> 01:24:26,107
I CAN PUT THIS IN THE CONTEXT OF

2092
01:24:26,107 --> 01:24:27,775
BUILDING OUT AN APPLICATION 

2093
01:24:27,775 --> 01:24:28,876
BECAUSE I'M A COMPUTER SCIENTIST

2094
01:24:28,876 --> 01:24:31,679
AND I TEACH A LOT OF STUDENTS.

2095
01:24:31,679 --> 01:24:33,948
WHEN YOU ARE BUILDING OUT AN 

2096
01:24:33,948 --> 01:24:36,951
APPLICATION, THERE CAN BE 

2097
01:24:36,951 --> 01:24:38,319
MULTIPLE COMPONENTS.

2098
01:24:38,319 --> 01:24:39,120
IF I GIVE YOU A COMPLEX PROBLEM 

2099
01:24:39,120 --> 01:24:41,389
WHAT YOU GET FROM THE LARGE 

2100
01:24:41,389 --> 01:24:42,490
LANGUAGE MODEL IS GOING TO BE 

2101
01:24:42,490 --> 01:24:43,491
SOMETHING INCOMPLETE, IT COULD 

2102
01:24:43,491 --> 01:24:45,827
BE INACCURATE.

2103
01:24:45,827 --> 01:24:47,962
AND WHY I KNOW IT COULD BE 

2104
01:24:47,962 --> 01:24:48,963
FILLED WITH BUGS.

2105
01:24:48,963 --> 01:24:51,199
WHY DO I KNOW THIS?

2106
01:24:51,199 --> 01:24:53,234
FOR EVERY 10 LINES OF CODE 

2107
01:24:53,234 --> 01:24:54,836
WRITTEN BY A SOFTWARE DEVELOPER 

2108
01:24:54,836 --> 01:24:56,504
THERE IS AT LEAST ONE BUG IN THE

2109
01:24:56,504 --> 01:24:56,704
CODE.

2110
01:24:56,704 --> 01:25:00,708
SO AS WE'RE TRAINING OUR LARGE 

2111
01:25:00,708 --> 01:25:01,242
LANGUAGE MODEL ON THESE 

2112
01:25:01,242 --> 01:25:02,677
DIFFERENT APPLICATIONS, GUESS 

2113
01:25:02,677 --> 01:25:02,944
WHAT?

2114
01:25:02,944 --> 01:25:04,579
IT IS GOING TO BE FILLED WITH 

2115
01:25:04,579 --> 01:25:05,046
BUGS.

2116
01:25:05,046 --> 01:25:06,848
SO OUR STUDENTS NEED THE SKILLS 

2117
01:25:06,848 --> 01:25:08,182
IN ORDER TO BE ABLE TO 

2118
01:25:08,182 --> 01:25:09,517
DETERMINE, LIKE, WHAT IS THE 

2119
01:25:09,517 --> 01:25:11,085
ISSUE HERE?

2120
01:25:11,085 --> 01:25:12,987
WHAT IS THE CHALLENGE?

2121
01:25:12,987 --> 01:25:15,990
AND I HAVE MAYBE A PORTION OF 

2122
01:25:15,990 --> 01:25:16,691
THE SOLUTION.

2123
01:25:16,691 --> 01:25:18,893
NOW WHAT ELSE DO I NEED IN ORDER

2124
01:25:18,893 --> 01:25:21,762
TO BUILD OUT A COMPLETE 

2125
01:25:21,762 --> 01:25:22,029
SOLUTION?

2126
01:25:22,029 --> 01:25:23,264
AND RIGHT NOW AI CAN'T DO THAT 

2127
01:25:23,264 --> 01:25:25,733
FOR US.

2128
01:25:25,733 --> 01:25:26,400
>> GREAT.

2129
01:25:26,400 --> 01:25:28,169
THANK YOU SO MUCH.

2130
01:25:28,169 --> 01:25:30,771
AND THANK YOU SO MUCH, DR. HILL,

2131
01:25:30,771 --> 01:25:34,342
FOR YOUR PRESENTATION, YOUR 

2132
01:25:34,342 --> 01:25:35,610
ENLIGHTNING PRESENTATION AND 

2133
01:25:35,610 --> 01:25:37,144
YOUR THOUGHTFUL ANSWERS TO THE 

2134
01:25:37,144 --> 01:25:38,312
QUESTIONS THAT HAVE COME IN.

2135
01:25:38,312 --> 01:25:40,481
IF YOU'D LIKE TO MAKE ONE MORE 

2136
01:25:40,481 --> 01:25:41,415
CONCLUDING REMARK, THAT WOULD BE

2137
01:25:41,415 --> 01:25:44,318
GREAT.

2138
01:25:44,318 --> 01:25:45,553
OTHERWISE, WE'LL TAKE A BREAK 

2139
01:25:45,553 --> 01:25:46,053
UNTIL 2:00.

2140
01:25:46,053 --> 01:25:47,989
>> I JUST WANT TO SAY,
AGAIN, 

2141
01:25:47,989 --> 01:25:48,956
THANKS SO MUCH.

2142
01:25:48,956 --> 01:25:50,691
IT HAS BEEN MY HONOR AND 

2143
01:25:50,691 --> 01:25:54,095
PLEASURE TO ACTUALLY PRESENT 

2144
01:25:54,095 --> 01:25:58,499
TODAY AND I WISH YOU A 

2145
01:25:58,499 --> 01:25:59,600
SUCCESSFUL SYMPOSIUM.

2146
01:25:59,600 --> 01:26:00,201
>> THANK YOU.

2147
01:26:00,201 --> 01:26:00,968
>> GREAT.

2148
01:26:00,968 --> 01:26:02,203
THANK YOU.

2149
01:26:02,203 --> 01:26:04,171
WE'LL NOW TAKE A BREAK UNTIL 

2150
01:26:04,171 --> 01:26:04,472
2:00.

2151
01:26:04,472 --> 01:26:05,439
THANKS AGAIN, DR. HILL.

2152
01:26:05,439 --> 01:26:05,940
>> ALL RIGHT.

2153
01:26:05,940 --> 01:26:09,508
YOU'RE WELCOME.

2154
01:26:09,508 --> 01:26:10,976
WE'LL INTRODUCE OUR PANELISTS.

2155
01:26:10,976 --> 01:26:12,778
OVER TO YOU, JENNA.

2156
01:26:12,778 --> 01:26:14,480
>> THANKS, LIZ.

2157
01:26:14,480 --> 01:26:19,585
SO AS LIZ SAID, MY NAME IS JENNA

2158
01:26:19,585 --> 01:26:20,219
NORTON.

2159
01:26:20,219 --> 01:26:22,154
I'M A DIRECTOR WITH THE NATIONAL

2160
01:26:22,154 --> 01:26:23,355
INSTITUTE OF DIABETES AND 

2161
01:26:23,355 --> 01:26:23,989
DIGESTIVE AND KIDNEY DISEASES.

2162
01:26:23,989 --> 01:26:26,625
WE WILL HEAR FROM PANELISTS ON 

2163
01:26:26,625 --> 01:26:31,163
DATA DRIVEN  INNOVATION FOR 

2164
01:26:31,163 --> 01:26:34,266
HEALTH OF WOMEN.

2165
01:26:34,266 --> 01:26:35,400
FOLLOWING OF THESE 

2166
01:26:35,400 --> 01:26:42,307
PRESENTATIONING, VIVIAN OTA WANG

2167
01:26:42,307 --> 01:26:45,444
WILL LEAD A MODERATED 

2168
01:26:45,444 --> 01:26:45,811
DISCUSSION.

2169
01:26:45,811 --> 01:26:48,781
I WILL KEEP OUR PANELISTS IN 

2170
01:26:48,781 --> 01:26:50,349
THEIR ALLOTTED TIME, SO EVERYONE

2171
01:26:50,349 --> 01:26:52,251
CAN SPEAK AND BE RESPECTFUL OF 

2172
01:26:52,251 --> 01:26:54,620
PANELISTS AND ATTENDEES.

2173
01:26:54,620 --> 01:26:56,889
SPEAKERS, I WILL COME BACK ON 

2174
01:26:56,889 --> 01:26:59,458
CAMERA WHEN YOU HAVE TWO MINUTES

2175
01:26:59,458 --> 01:26:59,858
REMAINING.

2176
01:26:59,858 --> 01:27:02,227
WHEN YOU SEE MY FACE THAT IS 

2177
01:27:02,227 --> 01:27:04,630
YOUR CUE TO BRING YOU TALK TO A 

2178
01:27:04,630 --> 01:27:06,431
CLOSE.

2179
01:27:06,431 --> 01:27:08,567
I APOLOGIZE IN ADVANCE AS I WILL

2180
01:27:08,567 --> 01:27:09,802
INTERRUPT YOU WITH A THANK YOU 

2181
01:27:09,802 --> 01:27:12,104
WHEN YOUR TIME HAS COME TO AN 

2182
01:27:12,104 --> 01:27:12,638
END.

2183
01:27:12,638 --> 01:27:14,439
WE WILL HEAR FROM MELISSA 

2184
01:27:14,439 --> 01:27:14,940
BUFFALO.

2185
01:27:14,940 --> 01:27:18,977
MS. BUFFALO, A STIT ZEN OF THE 

2186
01:27:18,977 --> 01:27:21,413
MUSQUKE NATION, 20 YEARS OF 

2187
01:27:21,413 --> 01:27:24,016
PUBLIC HEALTH AND DISPARITIES OF

2188
01:27:24,016 --> 01:27:24,316
COMMUNITIES.

2189
01:27:24,316 --> 01:27:27,219
SHE WAS APPOINTED CEO OF THE 

2190
01:27:27,219 --> 01:27:28,387
AMERICAN INDIANA CANCER 

2191
01:27:28,387 --> 01:27:30,289
FOUNDATION IN 2021 WHERE SHE 

2192
01:27:30,289 --> 01:27:33,725
LEDS EFFORTS TO IMPROVE OUTCOMES

2193
01:27:33,725 --> 01:27:35,928
FOR TRIBAL NATIONS AND NATIVE 

2194
01:27:35,928 --> 01:27:37,129
COMMUNITIES NATIONWIDE.

2195
01:27:37,129 --> 01:27:38,463
BEFORE JOINING THE FOUNDATION 

2196
01:27:38,463 --> 01:27:40,232
SHE HELD POSITIONS AT SANFORD 

2197
01:27:40,232 --> 01:27:42,734
HEALTH, VOLUNTEERS OF AMERICA 

2198
01:27:42,734 --> 01:27:43,368
AND ADMINISTRATION OF NATIVE 

2199
01:27:43,368 --> 01:27:44,703
AMERICANS IN WASHINGTON, D.C.

2200
01:27:44,703 --> 01:27:51,210
MS. BUFFALO HOLDS A BA IN CHILD 

2201
01:27:51,210 --> 01:27:52,845
PSYCHOLOGY, AMERICAN INDIAN 

2202
01:27:52,845 --> 01:27:54,479
SUBSTITUTES AND AN MS IN HEALTH 

2203
01:27:54,479 --> 01:27:56,415
DEVELOPMENT IN SOUTH DAKOTA.

2204
01:27:56,415 --> 01:28:01,520
SHE IS AN ENROLLED MEMBER OF THE

2205
01:28:01,520 --> 01:28:07,826
MUSQUKE CREEK FROM THE LOWER 

2206
01:28:07,826 --> 01:28:14,333
SIOUX TRIBES.

2207
01:28:14,333 --> 01:28:16,535
MS. BUFFALO, THE PODIUM IS 

2208
01:28:16,535 --> 01:28:16,735
YOURS.

2209
01:28:16,735 --> 01:28:18,637
>> GOOD AFTERNOON, I'M
HONORED 

2210
01:28:18,637 --> 01:28:21,974
TO BE REPRESENTING THE AMERICAN 

2211
01:28:21,974 --> 01:28:23,442
INDIAN CANCER FOUNDATION TALKING

2212
01:28:23,442 --> 01:28:26,612
ABOUT DATA AS STORIES FOR HEAL 

2213
01:28:26,612 --> 01:28:27,246
FOR WOMEN.

2214
01:28:27,246 --> 01:28:29,448
THANK YOU FOR OUR INTRODUCTION 

2215
01:28:29,448 --> 01:28:31,450
AND THANK YOU FOR WELCOMING OUR 

2216
01:28:31,450 --> 01:28:32,751
VOICE INTO THIS IMPORTANT 

2217
01:28:32,751 --> 01:28:33,385
CONVERSATION TODAY.

2218
01:28:33,385 --> 01:28:34,019
NEXT SLIDE.

2219
01:28:34,019 --> 01:28:36,388
I PROMISE I JUST LOOKED AT THE 

2220
01:28:36,388 --> 01:28:38,190
PICTURE, I HAVE ON THE SAME 

2221
01:28:38,190 --> 01:28:38,924
DRESS.

2222
01:28:38,924 --> 01:28:41,560
I PROMISE IT WAS NOT TAKEN 

2223
01:28:41,560 --> 01:28:42,094
TODAY.

2224
01:28:42,094 --> 01:28:43,729
SOME OF THE CONVERSATION ES WE 

2225
01:28:43,729 --> 01:28:44,963
TALK ABOUT AT THE WORK WE DO 

2226
01:28:44,963 --> 01:28:47,165
EVERY DAY YOU HAVE TO FIND HUMOR

2227
01:28:47,165 --> 01:28:49,167
AND LAUGHTER BECAUSE IT IS A LOT

2228
01:28:49,167 --> 01:28:50,869
OF HEAVY INFORMATION.

2229
01:28:50,869 --> 01:28:51,937
HOPEFULLY IN THE NEXT 14 

2230
01:28:51,937 --> 01:28:55,641
MINUTES, HOPING TO PROVIDE A 

2231
01:28:55,641 --> 01:28:58,610
UNIQUE OVERVIEW FOR NATIVE 

2232
01:28:58,610 --> 01:29:00,245
WOMEN, UNDERSTANDING HISTORICAL 

2233
01:29:00,245 --> 01:29:03,715
CONTEXT SUCH AS TRAUMA AND 

2234
01:29:03,715 --> 01:29:04,149
UNDERREPRESENTATION.

2235
01:29:04,149 --> 01:29:06,318
THE AMERICAN INDIAN CANCER'S 

2236
01:29:06,318 --> 01:29:08,287
INITIATIVES AND HOW WE GO ABOUT 

2237
01:29:08,287 --> 01:29:09,588
THAT WORK USING DATA AND 

2238
01:29:09,588 --> 01:29:10,289
STORIES.

2239
01:29:10,289 --> 01:29:12,257
AND WE TAKE THE DATA LOOKING AT 

2240
01:29:12,257 --> 01:29:13,992
IT NOT JUST A NUMBER, BUT 

2241
01:29:13,992 --> 01:29:16,028
STORIES AND MEDICINE FOR HEALING

2242
01:29:16,028 --> 01:29:18,830
AND HOW WE ALSO THAT DATA AND 

2243
01:29:18,830 --> 01:29:21,066
THOSE STORIES TO ADDRESS THE 

2244
01:29:21,066 --> 01:29:23,535
CANCER INEQUITIES FACED BY 

2245
01:29:23,535 --> 01:29:25,570
NATIVE PEOPLE AND WRAP IT UP AND

2246
01:29:25,570 --> 01:29:26,471
LOOK FOR A PATH FORWARD.

2247
01:29:26,471 --> 01:29:29,942
NEXT SLIDE.

2248
01:29:29,942 --> 01:29:31,276
NATIVE WOMEN FACE UNIQUE 

2249
01:29:31,276 --> 01:29:33,545
CHALLENGES SHAPED BY HISTORICAL 

2250
01:29:33,545 --> 01:29:35,013
TRAUMA, SYSTEMIC UNDERFUNDING 

2251
01:29:35,013 --> 01:29:38,216
AND MISTRUST IN RESEARCH AND 

2252
01:29:38,216 --> 01:29:39,818
THESE FACTORS CONTRIBUTE TO 

2253
01:29:39,818 --> 01:29:40,752
SIGNIFICANT DISPARITIES IN 

2254
01:29:40,752 --> 01:29:42,254
CANCER OUTCOMES.

2255
01:29:42,254 --> 01:29:43,588
ONE EXAMPLE IN GENERAL NATIVE 

2256
01:29:43,588 --> 01:29:46,091
WOMEN HAVE A LIFE EXPECTANCY OF 

2257
01:29:46,091 --> 01:29:50,295
67 YEARS OF AGE VERSUS 84 

2258
01:29:50,295 --> 01:29:51,563
NON-HISPANIC WHITE WOMEN.

2259
01:29:51,563 --> 01:29:53,899
AND THIS IS, YOU KNOW, AGAIN, WE

2260
01:29:53,899 --> 01:29:55,133
CAN COME FROM PERSONAL 

2261
01:29:55,133 --> 01:29:56,702
EXPERIENCE HAVING LOST MY MOM 

2262
01:29:56,702 --> 01:29:59,905
WHEN SHE WAS ONLY 56 YEARS OLD 

2263
01:29:59,905 --> 01:30:03,008
JUST AS I WAS BECOMING A MOM.

2264
01:30:03,008 --> 01:30:04,076
UNDERSTANDING HOW WE TAKE THESE 

2265
01:30:04,076 --> 01:30:06,912
STORIES, RIGHT, AND LOOK AT THE 

2266
01:30:06,912 --> 01:30:07,746
HISTORICAL TRAUMA THAT NATIVE 

2267
01:30:07,746 --> 01:30:09,214
PEOPLE HAVE ENDURED AND WE KNOW 

2268
01:30:09,214 --> 01:30:11,616
IT IS A LIVED REELTS, RIGHT?

2269
01:30:11,616 --> 01:30:13,552
WE THINK ABOUT THAT CUMULATIVE 

2270
01:30:13,552 --> 01:30:15,120
EMOTIONAL AND PSYCHOLOGICAL 

2271
01:30:15,120 --> 01:30:16,421
WOUNDS THAT HAVE BEEN PASSED 

2272
01:30:16,421 --> 01:30:18,623
DOWN THROUGH GENERATIONS DUE TO 

2273
01:30:18,623 --> 01:30:20,359
COLONIZATION, FORCED RELOCATION,

2274
01:30:20,359 --> 01:30:22,394
BOARDING SCHOOLS AND SYSTEMIC 

2275
01:30:22,394 --> 01:30:23,929
VIOLENCE AND THESE TRAUMAS 

2276
01:30:23,929 --> 01:30:27,265
MANIFEST TODAY IN HIGHER RATES 

2277
01:30:27,265 --> 01:30:29,334
OF CHRONIC MENTAL ILLNESS, AND 

2278
01:30:29,334 --> 01:30:30,469
CANCER AMONG NATIVE WOMEN.

2279
01:30:30,469 --> 01:30:33,905
TRAUMA CAN ALTER THE STRESS 

2280
01:30:33,905 --> 01:30:36,108
RESPONSE AND HELTS OUTCOMES FOR 

2281
01:30:36,108 --> 01:30:36,408
GENERATIONS.

2282
01:30:36,408 --> 01:30:38,977
WHEN A NATIVE WOMAN WALKS INTO A

2283
01:30:38,977 --> 01:30:40,812
CLINIC, SHE MAY NOT BE CARRYING 

2284
01:30:40,812 --> 01:30:42,814
ONLY HER PAIN, BUT THE UNHEALED 

2285
01:30:42,814 --> 01:30:44,416
PAIN OF OUR GRANDMOTHER AND 

2286
01:30:44,416 --> 01:30:46,418
THOSE WHO CAME BEFORE HER.

2287
01:30:46,418 --> 01:30:48,787
THE LENS OF HEALING IS WHOLISTIC

2288
01:30:48,787 --> 01:30:51,156
AND WE HAVE TO ADDRESS THE PAST 

2289
01:30:51,156 --> 01:30:52,557
TO UNDERSTAND THE FUTURE.

2290
01:30:52,557 --> 01:30:54,626
THIS TRAUMA HELPS US SEE WHY 

2291
01:30:54,626 --> 01:30:55,994
NATIVE COMMUNITIES APPROACH THE 

2292
01:30:55,994 --> 01:30:57,863
HEALTH SYSTEMS IN THE WAY THEY 

2293
01:30:57,863 --> 01:30:59,865
DO AND HOW WE COLLECT DATA WITH 

2294
01:30:59,865 --> 01:31:00,232
CAUTION.

2295
01:31:00,232 --> 01:31:03,769
WE HAVE TO LOOK AT HEALTH 

2296
01:31:03,769 --> 01:31:05,337
INTERVENTIONS AND THAT OFTEN 

2297
01:31:05,337 --> 01:31:07,806
IGNORE THE HISTORICAL TRAUMA AS 

2298
01:31:07,806 --> 01:31:10,876
BEING INEFFECTIVE OR THAT IT IS 

2299
01:31:10,876 --> 01:31:11,276
HARMFUL.

2300
01:31:11,276 --> 01:31:14,413
HOW CAN WE WORK TO ACKNOWLEDGE 

2301
01:31:14,413 --> 01:31:15,814
THE HISTORY CAN OPEN DOORS TO 

2302
01:31:15,814 --> 01:31:17,282
CULTURALLY GROUNDED CARE, 

2303
01:31:17,282 --> 01:31:21,853
COMMUNITY TRUST AND HEALING.

2304
01:31:21,853 --> 01:31:24,856
YOU KNOW, AGAIN, I THINK THAT IS

2305
01:31:24,856 --> 01:31:26,458
THE BRIEFEST I HAD A SLIDE ON 

2306
01:31:26,458 --> 01:31:27,959
HISTORICAL TRAUMA, WHICH IS 

2307
01:31:27,959 --> 01:31:29,094
REALLY DIFFICULT FOR ME IN 

2308
01:31:29,094 --> 01:31:30,228
GIVING CONTEXT.

2309
01:31:30,228 --> 01:31:32,130
AGAIN, HOW WE CAN TRULY 

2310
01:31:32,130 --> 01:31:34,499
UNDERSTAND HISTORICAL TRAUMA AND

2311
01:31:34,499 --> 01:31:36,802
HELP SEE WHY NATIVE COMMUNITIES 

2312
01:31:36,802 --> 01:31:37,903
APPROACH DATA COLLECTION IN THE 

2313
01:31:37,903 --> 01:31:39,871
WAY THEY DO.

2314
01:31:39,871 --> 01:31:42,007
COLLECTING HEALTH DATA FOR 

2315
01:31:42,007 --> 01:31:43,308
NATIVE WOMEN ISN'T JUST STARTING

2316
01:31:43,308 --> 01:31:44,443
FROM A NEW DRILL PLACE, WE ARE 

2317
01:31:44,443 --> 01:31:47,479
STARTING FROM 'A PLACE OF 

2318
01:31:47,479 --> 01:31:49,047
MISTRUST, UNDERINVESTMENT AND 

2319
01:31:49,047 --> 01:31:50,949
INVISIBILITY, WHICH I WILL TALK 

2320
01:31:50,949 --> 01:31:51,149
ABOUT.

2321
01:31:51,149 --> 01:31:52,751
I FEEL LIKE THROUGHOUT THIS 

2322
01:31:52,751 --> 01:31:53,318
PRESENTATION.

2323
01:31:53,318 --> 01:31:54,086
AGAIN, LISTING SOME OF THE HARMS

2324
01:31:54,086 --> 01:31:58,156
ON HERE.

2325
01:31:58,156 --> 01:31:59,291
LISTING SOME OF THESE AND BEING 

2326
01:31:59,291 --> 01:32:00,959
AS BRIEF AS I CAN, UNDERSTANDING

2327
01:32:00,959 --> 01:32:03,628
THE PAST HARMS AND THAT MISTRUST

2328
01:32:03,628 --> 01:32:04,930
BETWEEN NATIVE COMMUNITIES AND 

2329
01:32:04,930 --> 01:32:06,665
RESEARCHERS IS NOT UNFOUNDED, IT

2330
01:32:06,665 --> 01:32:10,836
IS OFTEN -- IT IS ROOTED IN A 

2331
01:32:10,836 --> 01:32:12,871
LONG HISTORY OF RESEARCH 

2332
01:32:12,871 --> 01:32:14,673
PRACTICES, DATA MISUSE AND 

2333
01:32:14,673 --> 01:32:15,140
BROKEN PROMISES.

2334
01:32:15,140 --> 01:32:17,476
OUR PEOPLE HAVE SEEN OUR STORIES

2335
01:32:17,476 --> 01:32:19,177
TAKEN WITHOUT CONSENT, USING 

2336
01:32:19,177 --> 01:32:20,879
THAT DATA WITHOUT BENEFIT AND 

2337
01:32:20,879 --> 01:32:26,685
VOICES BEING IGNORED.

2338
01:32:26,685 --> 01:32:28,453
EVEN WHEN COMMUNITIES ARE OFTEN 

2339
01:32:28,453 --> 01:32:30,322
WILLING TO ENGAGE, THEY LACK 

2340
01:32:30,322 --> 01:32:33,959
RESOURCES TO DO SO EFFECTIVELY 

2341
01:32:33,959 --> 01:32:35,694
AND SO THE UNDERFUNDING FOR 

2342
01:32:35,694 --> 01:32:37,829
NATIVE HEALTH SYSTEMS MEANS 

2343
01:32:37,829 --> 01:32:40,732
FEWER STAFF, OUTDATED TECHNOLOGY

2344
01:32:40,732 --> 01:32:42,033
AND LESS INFRASTRUCTURE FOR 

2345
01:32:42,033 --> 01:32:44,136
COLLECTING AND MANAGING DATA 

2346
01:32:44,136 --> 01:32:47,038
THAT IS TRUE FOR TOO MANY OF OUR

2347
01:32:47,038 --> 01:32:49,307
INDIAN HEALTH SERVICE CLINICS IN

2348
01:32:49,307 --> 01:32:52,978
URBAN AND RURAL COMMUNITIES.

2349
01:32:52,978 --> 01:32:55,147
ASTERISK NATION IS SOMETHING I 

2350
01:32:55,147 --> 01:32:58,817
LEARNED FROM SEEING THAT WE ARE 

2351
01:32:58,817 --> 01:32:59,751
NOT INCLUDED IN DATA.

2352
01:32:59,751 --> 01:33:03,021
IT IS MARKED AS STATICALLY 

2353
01:33:03,021 --> 01:33:05,090
INSIGNIFICANT DUE TO THE SMALL 

2354
01:33:05,090 --> 01:33:06,091
SAMPLE SIZE.

2355
01:33:06,091 --> 01:33:09,528
IT OFTEN MEANS NATIVE PEOPLE ARE

2356
01:33:09,528 --> 01:33:11,363
OVERLOOKED IN RESEARCH, FUNDING 

2357
01:33:11,363 --> 01:33:12,731
DECISIONS AND POLICY.

2358
01:33:12,731 --> 01:33:15,033
IT IS KNOWN AS ASTERISK NATION 

2359
01:33:15,033 --> 01:33:16,334
WHEN YOU ARE NOT INCLUDED IN 

2360
01:33:16,334 --> 01:33:16,902
THAT DATA.

2361
01:33:16,902 --> 01:33:19,804
IT IS A POWERFUL SYMBOL OF WHY 

2362
01:33:19,804 --> 01:33:22,140
DATA SOVEREIGNTY IS SO IMPORTANT

2363
01:33:22,140 --> 01:33:23,909
IN THIS CONVERSATION AND IN THE 

2364
01:33:23,909 --> 01:33:26,178
WORK WE DO ON A DAILY BASIS.

2365
01:33:26,178 --> 01:33:27,112
NEXT SLIDE.

2366
01:33:27,112 --> 01:33:28,680
TO UNDERSTAND, AGAIN, THAT DATA 

2367
01:33:28,680 --> 01:33:31,883
AND THE CONSEQUENCES OF 

2368
01:33:31,883 --> 01:33:32,651
UNDERREPRESENTATION IN RESEARCH 

2369
01:33:32,651 --> 01:33:34,186
AND POLICY FROM COLLECTING HOW 

2370
01:33:34,186 --> 01:33:38,623
WE USE THAT DATA IN A RESPECTFUL

2371
01:33:38,623 --> 01:33:38,924
WAY.

2372
01:33:38,924 --> 01:33:40,458
WE KNOW THOSE CONSEQUENCES GO 

2373
01:33:40,458 --> 01:33:45,130
FAR BEYOND THE NUMBERS.

2374
01:33:45,130 --> 01:33:46,932
WE CAN LOOK AT NOT HAVING THAT 

2375
01:33:46,932 --> 01:33:48,900
FULL PICTURE OF THEIR HEALTH 

2376
01:33:48,900 --> 01:33:50,702
NEEDS, THAT LACK OF CULTURALLY 

2377
01:33:50,702 --> 01:33:51,670
RELEVANT DATA, UNDERSTANDING 

2378
01:33:51,670 --> 01:33:53,872
THAT CAN LEAD TO THE 

2379
01:33:53,872 --> 01:33:54,973
MISUNDERSTANDING OF THE RISK 

2380
01:33:54,973 --> 01:33:56,875
FACTORS, THE SCREENING BEHAVIORS

2381
01:33:56,875 --> 01:33:59,578
AND EVEN TREATMENT OUTCOMES INTO

2382
01:33:59,578 --> 01:34:01,346
SURVIVORSHIP AND END OF LIFE.

2383
01:34:01,346 --> 01:34:04,516
SO HOW CAN WE DESIGN CARE THAT 

2384
01:34:04,516 --> 01:34:06,284
WORKS FOR NATIVE PEOPLE IF WE 

2385
01:34:06,284 --> 01:34:08,286
ARE NOT ABLE TO INCLUDE THEM IN 

2386
01:34:08,286 --> 01:34:10,222
IMPORTANT RESEARCH EFFORTS.

2387
01:34:10,222 --> 01:34:15,093
AGAIN, MISINFORMED POLICY 

2388
01:34:15,093 --> 01:34:15,560
DECISIONS.

2389
01:34:15,560 --> 01:34:18,029
AGAIN, UNDERSTANDING THE LACK OF

2390
01:34:18,029 --> 01:34:20,398
REPRESENTATION AND DATA LACKS 

2391
01:34:20,398 --> 01:34:22,200
REPRESENTATION ACROSS FUNDING.

2392
01:34:22,200 --> 01:34:23,768
IF WE DON'T SHOW UP IN FUNDING 

2393
01:34:23,768 --> 01:34:27,272
WE DON'T SHOW UP IN BUDGETS AND 

2394
01:34:27,272 --> 01:34:27,939
FUNDING OPPORTUNITIES.

2395
01:34:27,939 --> 01:34:29,874
HOW CAN ENTITIES LIKE THE 

2396
01:34:29,874 --> 01:34:30,942
AMERICAN INDIAN CANCER 

2397
01:34:30,942 --> 01:34:32,210
FOUNDATION AND OTHERS WORK TO 

2398
01:34:32,210 --> 01:34:34,412
BREAK THIS CYCLE BY RECLAIMING 

2399
01:34:34,412 --> 01:34:35,714
DATA AND MAKING SURE OUR VOICES 

2400
01:34:35,714 --> 01:34:38,350
ARE COUNTED IN HEALTH DATA AND 

2401
01:34:38,350 --> 01:34:40,252
NATIONAL DATA SETS.

2402
01:34:40,252 --> 01:34:41,186
NEXT SLIDE.

2403
01:34:41,186 --> 01:34:44,356
THIS IS REALLY WHY THE AMERICAN 

2404
01:34:44,356 --> 01:34:45,090
INDIAN CANCER FOUNDATION EXISTS 

2405
01:34:45,090 --> 01:34:46,758
SO WE CAN HELP TO ADDRESS THOSE,

2406
01:34:46,758 --> 01:34:48,760
WORK WITH CHUNTS AND ADDRESS 

2407
01:34:48,760 --> 01:34:49,894
THOSE DISPARITIES HEAD ON.

2408
01:34:49,894 --> 01:34:53,365
NEXT SLIDE.

2409
01:34:53,365 --> 01:34:54,833
-- WORK WITH COMMUNITIES AND 

2410
01:34:54,833 --> 01:34:55,734
ADDRESS THOSE DISPARITIES HEAD 

2411
01:34:55,734 --> 01:35:00,205
ON.

2412
01:35:00,205 --> 01:35:05,810
WE WANT TO INCREASE ACCESS TO 

2413
01:35:05,810 --> 01:35:06,544
EARLY PREVENTION.

2414
01:35:06,544 --> 01:35:08,113
I WROTE THE MISSION IS BOTH THE 

2415
01:35:08,113 --> 01:35:09,547
MISSION AND THE VISION.

2416
01:35:09,547 --> 01:35:11,750
I TRULY BELIEVE IN OUR MISSION, 

2417
01:35:11,750 --> 01:35:14,519
BUT OUR VISION IS TO SEE A WORLD

2418
01:35:14,519 --> 01:35:16,755
WHERE CANCER IS NO LONGER A 

2419
01:35:16,755 --> 01:35:18,256
LEADING CAUSE AMONG OUR PEOPLE 

2420
01:35:18,256 --> 01:35:19,791
AND WE REALLY DO SEE THAT DAY 

2421
01:35:19,791 --> 01:35:21,159
FOR OUR GRANDCHILDREN AND WE DO 

2422
01:35:21,159 --> 01:35:22,727
THIS BECAUSE IT IS NOT JUST 

2423
01:35:22,727 --> 01:35:24,596
ABOUT HEALTH, IT'S ABOUT JUSTICE

2424
01:35:24,596 --> 01:35:26,998
AND HOW WE CAN RESTORE THAT 

2425
01:35:26,998 --> 01:35:28,233
BALANCE AND ENSURE NATIVE WOMEN 

2426
01:35:28,233 --> 01:35:29,868
ARE NO LONGER INVISIBLE.

2427
01:35:29,868 --> 01:35:31,770
AGAIN, THE WORK WE DO FROM 

2428
01:35:31,770 --> 01:35:34,072
RESEARCH AND EVALUATION TO 

2429
01:35:34,072 --> 01:35:35,440
PREVENTION AND POLICY TO WORKING

2430
01:35:35,440 --> 01:35:36,675
WITH HEALTH SYSTEMS IS WORKING 

2431
01:35:36,675 --> 01:35:39,077
TO DO THAT EFFECTIVELY AND IN A 

2432
01:35:39,077 --> 01:35:41,079
CULTURALLY GROUNDED MANNER.

2433
01:35:41,079 --> 01:35:41,880
NEXT SLIDE.

2434
01:35:41,880 --> 01:35:43,448
AND SO WHEN WE TAKE THOSE 

2435
01:35:43,448 --> 01:35:45,917
VISIONS, RIGHT, HOW DO WE GO TO 

2436
01:35:45,917 --> 01:35:46,151
ACTION?

2437
01:35:46,151 --> 01:35:48,687
HOW DO WE USE STRATEGIES TO 

2438
01:35:48,687 --> 01:35:51,256
RECLAIM INDIGENOUS HEALTH WITH 

2439
01:35:51,256 --> 01:35:53,124
GOOD INTENTIONS?

2440
01:35:53,124 --> 01:35:56,027
AGAIN, WE MAKE THE INVISIBLE 

2441
01:35:56,027 --> 01:35:56,494
VISIBLE.

2442
01:35:56,494 --> 01:35:59,364
WE RAISE AWARENESS OF THE UNIQUE

2443
01:35:59,364 --> 01:36:00,965
CANCER BURDENS OUR COMMUNITIES 

2444
01:36:00,965 --> 01:36:01,766
ARE FACING.

2445
01:36:01,766 --> 01:36:03,268
WE DO THAT IN CULTURALLY 

2446
01:36:03,268 --> 01:36:04,502
GROUNDED SOLUTIONS FROM THE 

2447
01:36:04,502 --> 01:36:05,770
COMMUNITY BECAUSE WE KNOW THAT 

2448
01:36:05,770 --> 01:36:08,106
ALREADY EXISTS WITHIN THEM.

2449
01:36:08,106 --> 01:36:10,308
WE HOPE TO BUILD LOCAL CAPACITY 

2450
01:36:10,308 --> 01:36:12,944
BY OFFERING TRAINING, PROVIDING 

2451
01:36:12,944 --> 01:36:14,546
TOOLS AND TECHNICAL ASSISTANCE 

2452
01:36:14,546 --> 01:36:16,781
EFFECTIVE AND ROOTED IN OUR WAYS

2453
01:36:16,781 --> 01:36:19,084
AS NATIVE PEOPLE AND CAN BE TAI 

2454
01:36:19,084 --> 01:36:20,285
TORED TO EVERY TRIBE.

2455
01:36:20,285 --> 01:36:27,692
THERE ARE 577  -- 574 TRIBAL 

2456
01:36:27,692 --> 01:36:30,395
NATIONS ACROSS INDIAN COUNTRY 

2457
01:36:30,395 --> 01:36:32,831
AND THEY HAVE UNIQUE 

2458
01:36:32,831 --> 01:36:33,198
CHARACTERISTICS.

2459
01:36:33,198 --> 01:36:36,468
WE ARE LOOKING TO SHARE ACCURATE

2460
01:36:36,468 --> 01:36:37,736
NATIVE LED DATA.

2461
01:36:37,736 --> 01:36:40,271
WHEN WE HAVE OUR DATA WE CAN 

2462
01:36:40,271 --> 01:36:41,873
SHAPE HEALTH OUTCOMES AND 

2463
01:36:41,873 --> 01:36:42,374
IMPROVE DISPARITIES.

2464
01:36:42,374 --> 01:36:44,809
NEXT SLIDE.

2465
01:36:44,809 --> 01:36:46,177
I REALLY THINK, YOU KNOW, THAT 

2466
01:36:46,177 --> 01:36:47,712
SENSE OF NOT JUST SEEING DATA AS

2467
01:36:47,712 --> 01:36:50,715
A POINT, AS A NUMBER, BUT, 

2468
01:36:50,715 --> 01:36:52,984
AGAIN, HOW DO WE SEE THESE AS 

2469
01:36:52,984 --> 01:36:54,853
STORIES, AS MEDICINES, 

2470
01:36:54,853 --> 01:36:56,020
UNDERSTANDING THE STORY MY 

2471
01:36:56,020 --> 01:36:57,956
SISTER HAS AS A BREAST CANCER 

2472
01:36:57,956 --> 01:37:00,525
SURVIVOR IS SOMETHING THAT CAN 

2473
01:37:00,525 --> 01:37:01,926
INFORM, YOU KNOW, STORIES FOR 

2474
01:37:01,926 --> 01:37:03,561
WOMEN DOWN THE ROAD AND THAT IS 

2475
01:37:03,561 --> 01:37:05,864
HEALING AND THAT IS CONSIDERED 

2476
01:37:05,864 --> 01:37:06,131
MEDICINE.

2477
01:37:06,131 --> 01:37:08,266
IT IS THE LIVED EXPERIENCE OF 

2478
01:37:08,266 --> 01:37:09,067
OUR PEOPLE.

2479
01:37:09,067 --> 01:37:11,336
AND SO THE NEXT CHART AGAIN, 

2480
01:37:11,336 --> 01:37:13,238
JUST VERY BRIEF ON SOME OF THE 

2481
01:37:13,238 --> 01:37:15,140
ACTUAL DATA THAT WE HAVE.

2482
01:37:15,140 --> 01:37:16,107
BECAUSE -- NEXT SLIDE.

2483
01:37:16,107 --> 01:37:17,642
BECAUSE THE DATA IS THERE.

2484
01:37:17,642 --> 01:37:19,377
I DIDN'T WANT TO GO TOO DEEP 

2485
01:37:19,377 --> 01:37:20,945
INTO SOME OF THE BURDENS.

2486
01:37:20,945 --> 01:37:23,248
I THINK WE ALL KNOW HOPEFULLY 

2487
01:37:23,248 --> 01:37:25,049
THAT THEY DO EXIST.

2488
01:37:25,049 --> 01:37:28,253
THIS CHART COMPARES CANCER 

2489
01:37:28,253 --> 01:37:31,923
INCIDENTS AND MORTALITY RATES 

2490
01:37:31,923 --> 01:37:33,324
BETWEEN ALASKA NATIVE AND 

2491
01:37:33,324 --> 01:37:33,992
AMERICAN INDIAN AGAINST WHY 

2492
01:37:33,992 --> 01:37:35,794
WOMEN.

2493
01:37:35,794 --> 01:37:39,097
AMERICAN INDIAN AND ALASKA 

2494
01:37:39,097 --> 01:37:40,899
NATIVE FACE HIGH RATES OF 

2495
01:37:40,899 --> 01:37:43,368
CANCERS.

2496
01:37:43,368 --> 01:37:46,337
THEY ARE OFTEN DIAGNOSED AT 

2497
01:37:46,337 --> 01:37:48,406
LATER STAGES AND MOST LIVE IN 

2498
01:37:48,406 --> 01:37:50,175
RURAL IF NOT FRONTIER 

2499
01:37:50,175 --> 01:37:51,075
COMMUNITIES ACROSS THE U.S. THAT

2500
01:37:51,075 --> 01:37:53,545
MAKES IT HARD TO TO GET TO 

2501
01:37:53,545 --> 01:37:53,812
TREATMENT.

2502
01:37:53,812 --> 01:37:56,214
SO THE BURDENS JUST KIND OF PILE

2503
01:37:56,214 --> 01:37:58,716
UP FOR OUR PEOPLE.

2504
01:37:58,716 --> 01:38:00,785
TO RECEIVER A REFERRAL OUTSIDE 

2505
01:38:00,785 --> 01:38:02,220
OF INDIANA HEALTH SERVICE WHICH 

2506
01:38:02,220 --> 01:38:05,223
IS NOT INSURANCE IS ALSO, YOU 

2507
01:38:05,223 --> 01:38:07,492
KNOW, ANOTHER BURDEN TO NAVIGATE

2508
01:38:07,492 --> 01:38:09,661
THOSE HEALTH SYSTEMS.

2509
01:38:09,661 --> 01:38:11,329
AGAIN, TRYING TO EMPHASIZE, 

2510
01:38:11,329 --> 01:38:12,997
THESE AREN'T NUMBERS, THEY ARE 

2511
01:38:12,997 --> 01:38:15,300
STORIES OF DELAYED DIAGNOSIS, 

2512
01:38:15,300 --> 01:38:16,568
LIMIT ACCESS TO CARE AND SYSTEM 

2513
01:38:16,568 --> 01:38:17,902
OF NEGLECT.

2514
01:38:17,902 --> 01:38:19,671
WE CURRENTLY HAVE FUNDING FROM 

2515
01:38:19,671 --> 01:38:22,173
THE CDC IN BREAST AND CERVICAL 

2516
01:38:22,173 --> 01:38:23,374
TO WORK WITH HEALTH DISABILITIES

2517
01:38:23,374 --> 01:38:26,945
TO WORK TO GET WOMEN UNINSURED 

2518
01:38:26,945 --> 01:38:28,413
SCREENED FOR BREAST AND CERVICAL

2519
01:38:28,413 --> 01:38:30,248
CANCER MPLS WE HAVE A FIVE-YEAR 

2520
01:38:30,248 --> 01:38:32,817
CANCER PLAN TO SUPPORT IMPROVED 

2521
01:38:32,817 --> 01:38:34,886
HEALTH FOR AMERICAN INDIANS IN 

2522
01:38:34,886 --> 01:38:36,988
TEXAS THROUGH COALITION EFFORTS.

2523
01:38:36,988 --> 01:38:39,057
ONE THING I'M SAD I DID NOT 

2524
01:38:39,057 --> 01:38:41,826
INCLUDE IS SOME OF OUR 

2525
01:38:41,826 --> 01:38:42,660
CULTURALLY TAILORED RESOURCES 

2526
01:38:42,660 --> 01:38:43,795
THAT ALIGN WITH OUR TRIBAL 

2527
01:38:43,795 --> 01:38:46,097
COMMUNITIES BY INCORPORATING 

2528
01:38:46,097 --> 01:38:48,266
LANGUAGE, IMAGES AND WORKING 

2529
01:38:48,266 --> 01:38:49,534
WITH COMMUNITIES TO FINALIZE AND

2530
01:38:49,534 --> 01:38:51,970
GET THEM OUT THE DOOR AND IN 

2531
01:38:51,970 --> 01:38:54,405
CLINICS AND COMMUNITY AND TO BE 

2532
01:38:54,405 --> 01:38:58,042
CRUISED FOR CONVERSATIONS.

2533
01:38:58,042 --> 01:38:58,510
NEXT SLIDE.

2534
01:38:58,510 --> 01:39:00,712
AND WHEN WE LOOK AT THE DATA 

2535
01:39:00,712 --> 01:39:02,614
THROUGH A CULTURAL LENS WE CAN 

2536
01:39:02,614 --> 01:39:05,316
SEE WHAT STANDARD ANALYSIS CAN 

2537
01:39:05,316 --> 01:39:05,950
OFTEN MISS.

2538
01:39:05,950 --> 01:39:08,286
WE CAN LOOK AT IMPACT OF 

2539
01:39:08,286 --> 01:39:09,554
TRADITIONAL ROLES, HISTORICAL 

2540
01:39:09,554 --> 01:39:13,424
TRAUMA AND THE COMMUNITY-BASED 

2541
01:39:13,424 --> 01:39:14,826
CAREGIVING AND USE THOSE 

2542
01:39:14,826 --> 01:39:15,693
INSIGHTS TO HELP UNDERSTAND WHAT

2543
01:39:15,693 --> 01:39:18,062
IS NOT HAPPENING, BUT 

2544
01:39:18,062 --> 01:39:20,865
UNDERSTANDING THE WHY AS WELL.

2545
01:39:20,865 --> 01:39:22,133
GROUNDS THAT WORK IN CULTURAL 

2546
01:39:22,133 --> 01:39:24,302
KNOWLEDGE, WE CAN USE THAT TO 

2547
01:39:24,302 --> 01:39:26,004
DESIGN INTERVENTIONS THAT 

2548
01:39:26,004 --> 01:39:28,973
ACTUALLY RESONATE WITH OUR 

2549
01:39:28,973 --> 01:39:30,542
COMMUNITIES, WHETHER OR NOT WE 

2550
01:39:30,542 --> 01:39:31,776
ARE TALKING ABOUT CANCER 

2551
01:39:31,776 --> 01:39:34,112
SCREENINGS, HOW WE DELIVER CARE 

2552
01:39:34,112 --> 01:39:35,046
OR WHERE PATIENT NAVIGATION 

2553
01:39:35,046 --> 01:39:36,447
COMES IN.

2554
01:39:36,447 --> 01:39:37,749
WE SEE CULTURE AS A BRIDGE IN 

2555
01:39:37,749 --> 01:39:39,250
THIS WORK.

2556
01:39:39,250 --> 01:39:42,220
WE CURRENTLY HAVE A PILOT 

2557
01:39:42,220 --> 01:39:44,956
RESEARCH IN MINNESOTA TO 

2558
01:39:44,956 --> 01:39:46,157
INCREASE PROVIDERS KNOWLEDGE 

2559
01:39:46,157 --> 01:39:47,659
WORKING WITH NATIVE PEOPLE TO 

2560
01:39:47,659 --> 01:39:48,993
BETTER ENGAGE WITH THOSE 

2561
01:39:48,993 --> 01:39:50,762
PATIENTS THROUGH THAT CULTURALLY

2562
01:39:50,762 --> 01:39:53,231
TAILORED LENS AND USING THIS 

2563
01:39:53,231 --> 01:39:57,669
TRAINING AS A PRE AND POST TO 

2564
01:39:57,669 --> 01:39:58,336
DETERMINE WHETHER OR NOT THIS 

2565
01:39:58,336 --> 01:39:59,637
TRAINING IS EFFECTIVE.

2566
01:39:59,637 --> 01:40:01,573
AGAIN, IT IS PROMISING TO SEE 

2567
01:40:01,573 --> 01:40:03,608
THIS HEALTH SYSTEM INITIATED 

2568
01:40:03,608 --> 01:40:05,977
THIS CONVERSATION AND WANTS TO 

2569
01:40:05,977 --> 01:40:07,812
STRENGTHEN THEIR EFFORTS TO 

2570
01:40:07,812 --> 01:40:09,347
INTEGRATE CULTURALLY CENTERED 

2571
01:40:09,347 --> 01:40:10,748
CARE INTO THEIR HEALTH SYSTEM 

2572
01:40:10,748 --> 01:40:12,550
AND IMPROVE RELATIONSHIPS WITH 

2573
01:40:12,550 --> 01:40:17,055
THE TRIBES IN MINNESOTA.

2574
01:40:17,055 --> 01:40:18,723
NEXT SLIDE.

2575
01:40:18,723 --> 01:40:20,325
REALLY, AGAIN, I FEEL LIKE THE 

2576
01:40:20,325 --> 01:40:22,093
THEME ACROSS THESE SLIDES HAVE 

2577
01:40:22,093 --> 01:40:24,629
BEEN HONORING, INTEGRATING 

2578
01:40:24,629 --> 01:40:25,930
TRADITIONAL KNOWLEDGE LOOKING AT

2579
01:40:25,930 --> 01:40:29,167
THAT DATA AND THOSE STORIES.

2580
01:40:29,167 --> 01:40:30,568
UNDERSTAND THE WHAT AND WHY AND 

2581
01:40:30,568 --> 01:40:31,836
RECONNECTING BACK TO THE HOW, 

2582
01:40:31,836 --> 01:40:33,404
AND THAT IS WHERE THE 

2583
01:40:33,404 --> 01:40:35,440
TRADITIONAL KNOWLEDGE COMES IN.

2584
01:40:35,440 --> 01:40:36,641
IT DOESN'T SEPARATE FROM THE 

2585
01:40:36,641 --> 01:40:36,874
HEALTH.

2586
01:40:36,874 --> 01:40:38,743
WE HAVE TO TAKE ALL OF IT INTO 

2587
01:40:38,743 --> 01:40:40,178
CONSIDERATION BECAUSE IT IS ALL 

2588
01:40:40,178 --> 01:40:40,778
HEALTH.

2589
01:40:40,778 --> 01:40:42,981
WE CAN INTEGRATE OUR TRADITIONAL

2590
01:40:42,981 --> 01:40:45,316
PRACTICES INTO THE HEALTH CARE, 

2591
01:40:45,316 --> 01:40:46,818
INTO THE TREATMENT WHEN THERE'S 

2592
01:40:46,818 --> 01:40:49,988
A DIAGNOSIS AND AGAIN, USING 

2593
01:40:49,988 --> 01:40:54,125
THOSE TO HELP IMPROVE THE LIVES 

2594
01:40:54,125 --> 01:40:57,695
OF NATIVE PEOPLE, WE CAN LOOK AT

2595
01:40:57,695 --> 01:40:59,030
STORYTELLING, CEREMONY, WE CAN 

2596
01:40:59,030 --> 01:41:00,398
USE THESE TO SUPPORT THE 

2597
01:41:00,398 --> 01:41:01,366
WELLNESS AND FUTURE OF RESEARCH 

2598
01:41:01,366 --> 01:41:03,768
AND STUDIES TO IMPROVE THE 

2599
01:41:03,768 --> 01:41:04,969
HEALTH AND WELLNESS AND SEE IT 

2600
01:41:04,969 --> 01:41:06,904
IS EFFECTIVE AND MAKE CHANGES 

2601
01:41:06,904 --> 01:41:08,573
THAT, YOU KNOW, ARE REVIEWED BY 

2602
01:41:08,573 --> 01:41:09,707
NATIVE PEOPLE AND FOR NATIVE 

2603
01:41:09,707 --> 01:41:09,941
PEOPLE.

2604
01:41:09,941 --> 01:41:12,343
NEXT SLIDE.

2605
01:41:12,343 --> 01:41:15,713
AND I REALIZE I'M DOWN TO TWO 

2606
01:41:15,713 --> 01:41:15,947
MINUTES.

2607
01:41:15,947 --> 01:41:17,115
I'M GOING TO TALK FAST.

2608
01:41:17,115 --> 01:41:18,950
AS NATIVE PEOPLE WE WANT TO TAKE

2609
01:41:18,950 --> 01:41:20,551
THESE INTERVENTIONS AND TAILOR 

2610
01:41:20,551 --> 01:41:22,320
THEM TO OUR COMMUNITIES AND WORK

2611
01:41:22,320 --> 01:41:24,389
WITH THEM AND USE THE DATA 

2612
01:41:24,389 --> 01:41:26,557
GROUNDED IN COMMUNITY REALITIES.

2613
01:41:26,557 --> 01:41:28,559
BEING SPECIFIC TO REGIONS, TO 

2614
01:41:28,559 --> 01:41:30,762
COMMUNITIES, TO TRIBES SO THAT 

2615
01:41:30,762 --> 01:41:31,663
WE CAN TARGET SUCCESSFUL 

2616
01:41:31,663 --> 01:41:35,233
INTERVENTIONS.

2617
01:41:35,233 --> 01:41:35,533
NEXT SLIDE.

2618
01:41:35,533 --> 01:41:40,371
NEXT SLIDE.

2619
01:41:40,371 --> 01:41:41,806
I WON'T GO TOO MUCH INTO THIS 

2620
01:41:41,806 --> 01:41:43,808
ONE BECAUSE WE TALKED ABOUT THE 

2621
01:41:43,808 --> 01:41:45,576
UNIQUE BURDENS FACED BY NATIVE 

2622
01:41:45,576 --> 01:41:46,377
PEOPLE.

2623
01:41:46,377 --> 01:41:50,114
AGAIN, HIGHLIGHTING WHAT SOME OF

2624
01:41:50,114 --> 01:41:52,417
THOSE DIFFERENCES ARE, CANCERS 

2625
01:41:52,417 --> 01:41:55,720
LIKE CERVICAL, BREAST AND COLO 

2626
01:41:55,720 --> 01:41:58,523
RECTAL OCCUR AT HIGHER RATES FOR

2627
01:41:58,523 --> 01:42:01,392
OUR PEOPLE AND THESE DISPARITIES

2628
01:42:01,392 --> 01:42:03,428
ARE NOT RANDOM.

2629
01:42:03,428 --> 01:42:07,065
THEY ARE ROOTED IN HISTORIC 

2630
01:42:07,065 --> 01:42:07,432
NEGLECT.

2631
01:42:07,432 --> 01:42:11,636
NATIVE WOMEN FACE GEOGRAPHIC, 

2632
01:42:11,636 --> 01:42:12,904
FINANCIAL AND SYSTEMIC BARRIERS 

2633
01:42:12,904 --> 01:42:13,638
TO CARE.

2634
01:42:13,638 --> 01:42:17,041
WE CAN GO TO THE NEXT SLIDE.

2635
01:42:17,041 --> 01:42:18,710
IT IS SOMETHING WE WANT TO DO 

2636
01:42:18,710 --> 01:42:19,677
WITH COMMUNITIES.

2637
01:42:19,677 --> 01:42:21,646
HERE IS A FEW OF THE RESOURCES 

2638
01:42:21,646 --> 01:42:21,846
AGAIN.

2639
01:42:21,846 --> 01:42:23,815
I THINK WE ALL CAN UNDERSTAND 

2640
01:42:23,815 --> 01:42:27,318
THE IMPORTANCE OF COMMUNITY G

2641
01:42:27,318 --> 01:42:29,620
GAME -- COMMUNITY ENGAGEMENT AND

2642
01:42:29,620 --> 01:42:31,089
HOW WE DO THAT.

2643
01:42:31,089 --> 01:42:32,557
HOW DO WE GO IN COMMUNITY?

2644
01:42:32,557 --> 01:42:34,125
HOW DO WE BUILD THAT 

2645
01:42:34,125 --> 01:42:34,525
RELATIONSHIP?

2646
01:42:34,525 --> 01:42:36,294
AND THAT IS OFTEN SITTING THERE,

2647
01:42:36,294 --> 01:42:37,628
NOT GOING IN WITH AN AGENDA, 

2648
01:42:37,628 --> 01:42:39,464
BEING ABLE TO HEAR THE COMMUNITY

2649
01:42:39,464 --> 01:42:43,935
VERSUS DOING MORE TALKING.

2650
01:42:43,935 --> 01:42:44,836
NEXT SLIDE.

2651
01:42:44,836 --> 01:42:47,238
SO I THINK -- NEXT SLIDE AGAIN.

2652
01:42:47,238 --> 01:42:48,906
USING THIS INFORMATION AS A PATH

2653
01:42:48,906 --> 01:42:51,242
WAY FORWARD TO HELP WITH POLICY 

2654
01:42:51,242 --> 01:42:52,677
RECOMMENDATIONS AND ADVOCACY 

2655
01:42:52,677 --> 01:42:53,611
THROUGH A NATIVE LENGS AND 

2656
01:42:53,611 --> 01:42:56,447
WORKING WITH ACS AND OTHERS WHO 

2657
01:42:56,447 --> 01:42:58,883
ARE DOING SIMILAR WORK BUT 

2658
01:42:58,883 --> 01:43:00,618
OFTENTIMES NOT THROUGH THE 

2659
01:43:00,618 --> 01:43:02,220
NATIVE LENS.

2660
01:43:02,220 --> 01:43:03,755
NEXT SLIDE.

2661
01:43:03,755 --> 01:43:05,456
UNDERSTANDING THOSE LONG-TERM 

2662
01:43:05,456 --> 01:43:06,758
PARTNERSHIPS MAKE A DIFFERENCE.

2663
01:43:06,758 --> 01:43:08,593
WHEN WE THINK ABOUT OUR PERSONAL

2664
01:43:08,593 --> 01:43:10,328
RELATIONSHIPS THE LONGEST ONES 

2665
01:43:10,328 --> 01:43:12,230
TRULY HAVE OUR HEART AND OUR 

2666
01:43:12,230 --> 01:43:14,699
BENEFIT AND WE SEE THAT 

2667
01:43:14,699 --> 01:43:15,433
CO-EXISTENCE OF THAT.

2668
01:43:15,433 --> 01:43:16,234
NEXT SLIDE.

2669
01:43:16,234 --> 01:43:19,137
SO CLOSE I WANT TO EMPHASIZE 

2670
01:43:19,137 --> 01:43:21,339
THAT DATA SOVEREIGNTY IS NOT 

2671
01:43:21,339 --> 01:43:22,006
JUST ABOUT CONTROL.

2672
01:43:22,006 --> 01:43:23,508
IT IS ABOUT HEALING.

2673
01:43:23,508 --> 01:43:25,343
WHEN WE RECLAIM OUR STORIES WE 

2674
01:43:25,343 --> 01:43:27,612
RECLAIM OUR POWER.

2675
01:43:27,612 --> 01:43:31,315
NEXT SLIDE.

2676
01:43:31,315 --> 01:43:33,117
THANK YOU FOR LISTENING AND I 

2677
01:43:33,117 --> 01:43:34,318
HOPE I DIDN'T TALK TOO FAST.

2678
01:43:34,318 --> 01:43:39,257
>> THAT WAS TIMED
PERFECTLY TO 

2679
01:43:39,257 --> 01:43:41,659
THE SECOND.

2680
01:43:41,659 --> 01:43:44,395
THANK YOU SO MUCH, MS. BUFFALO.

2681
01:43:44,395 --> 01:43:46,063
NEXT WE HEAR FROM ROCHELLE 

2682
01:43:46,063 --> 01:43:47,832
PROSSER, AN ARMY MOM AND 

2683
01:43:47,832 --> 01:43:49,133
DEDICATED HEALTH CARE FOUNDER 

2684
01:43:49,133 --> 01:43:53,204
WHO TURNED HER FAMILY'S 

2685
01:43:53,204 --> 01:43:54,639
STRUGGLES CAN CANCER AS A 

2686
01:43:54,639 --> 01:43:56,674
MISSION TO HELP OTHERS.

2687
01:43:56,674 --> 01:43:59,644
A WIFE AND PARENT OF TWO CANCER 

2688
01:43:59,644 --> 01:43:59,911
SURVIVORS.

2689
01:43:59,911 --> 01:44:04,081
SHE SPENT NINE YEARS LOOKING FOR

2690
01:44:04,081 --> 01:44:05,316
A VIABLE TREATMENT.

2691
01:44:05,316 --> 01:44:07,885
SHE FOUNDED THE PROSSER 

2692
01:44:07,885 --> 01:44:09,253
TREATMENT DATA BASE REDUCING 

2693
01:44:09,253 --> 01:44:11,189
STRESS AND INFORMS GAPS FOR 

2694
01:44:11,189 --> 01:44:11,856
OTHER FAMILIES.

2695
01:44:11,856 --> 01:44:14,158
THROUGH HER COMPANY, ORCHID 

2696
01:44:14,158 --> 01:44:15,259
HEALTH CARE SOLUTIONS, SHE 

2697
01:44:15,259 --> 01:44:17,528
PROVIDES NURSING DEDICATED 

2698
01:44:17,528 --> 01:44:19,363
ELECTRONIC HEALTH RECORDS, 

2699
01:44:19,363 --> 01:44:20,398
CANCER EDUCATION AND HEALTH CARE

2700
01:44:20,398 --> 01:44:23,701
SYSTEM NAVIGATION TO PATIENTS, 

2701
01:44:23,701 --> 01:44:25,736
ONCOLOGY PROVIDERS AND SHE IS A 

2702
01:44:25,736 --> 01:44:28,005
FOUNDING MEMBER OF THE 

2703
01:44:28,005 --> 01:44:29,340
PRESIDENT'S PANEL OF THE CANCER 

2704
01:44:29,340 --> 01:44:33,311
MOON SHOT AND REMAINS AN ACTIVE 

2705
01:44:33,311 --> 01:44:35,646
MEMBER OF NUMEROUS PROFESSIONAL 

2706
01:44:35,646 --> 01:44:35,980
ORGANIZATIONS.

2707
01:44:35,980 --> 01:44:43,087
WELCOME, MS. PROSSER.

2708
01:44:43,087 --> 01:44:45,356
>> HELLO, EVERYONE.

2709
01:44:45,356 --> 01:44:47,892
NICE TO MEET YOU.

2710
01:44:47,892 --> 01:44:49,193
FOLLOWING MELISSA BUFFALO IS A 

2711
01:44:49,193 --> 01:44:53,231
PLEASURE AND A TREASURE.

2712
01:44:53,231 --> 01:44:56,434
THIS MONTH IS BRAIN TUMOR 

2713
01:44:56,434 --> 01:44:58,236
AWARENESS AND GOING GRAY FOR 

2714
01:44:58,236 --> 01:45:00,137
AWARENESS SO MY BACKGROUND IS 

2715
01:45:00,137 --> 01:45:00,938
GRAY.

2716
01:45:00,938 --> 01:45:02,406
I'M TALKING ABOUT SURVIVING 

2717
01:45:02,406 --> 01:45:05,843
TUMORS USING DATA.

2718
01:45:05,843 --> 01:45:07,144
NEXT SLIDE.

2719
01:45:07,144 --> 01:45:08,379
YOU'VE HAD MY BACKGROUND.

2720
01:45:08,379 --> 01:45:09,780
I JUST HAVE IT HERE.

2721
01:45:09,780 --> 01:45:11,816
JUST TO UNDERSTAND THAT YOU GO 

2722
01:45:11,816 --> 01:45:13,384
THROUGH THE CANCER JOURNEY AND 

2723
01:45:13,384 --> 01:45:14,719
THERE IS EVERYTHING ELSE THAT 

2724
01:45:14,719 --> 01:45:16,988
COMES BACK AND MOST PEOPLE FEEL 

2725
01:45:16,988 --> 01:45:19,090
THAT YOU'VE GONE THROUGH THE 

2726
01:45:19,090 --> 01:45:20,558
JOURNEY, NOW YOU DON'T NEED ANY 

2727
01:45:20,558 --> 01:45:21,125
HELP.

2728
01:45:21,125 --> 01:45:23,327
MOST OF THE SUPPORT, IT IS MOST 

2729
01:45:23,327 --> 01:45:25,062
IMPORTANTLY NEEDED IN THAT 

2730
01:45:25,062 --> 01:45:26,163
SECOND HALF OF THE JOURNEY.

2731
01:45:26,163 --> 01:45:29,867
WE CAN GO TO THE NEXT SLIDE.

2732
01:45:29,867 --> 01:45:33,504
FOR US, IT IS THE HEART OF THE 

2733
01:45:33,504 --> 01:45:33,738
MATTER.

2734
01:45:33,738 --> 01:45:35,506
ALTHOUGH IT IS BRAIN CANCER, BUT

2735
01:45:35,506 --> 01:45:37,942
EVEN THOUGH YOU ARE GETTING 

2736
01:45:37,942 --> 01:45:39,010
CHEMOTHERAPY AND ALL OF THESE 

2737
01:45:39,010 --> 01:45:41,479
OTHER TREATMENTS, YOU NEVER GO 

2738
01:45:41,479 --> 01:45:41,979
UNSCATHED.

2739
01:45:41,979 --> 01:45:43,981
IT ENDS UP BEING THE WHOLE BODY 

2740
01:45:43,981 --> 01:45:45,049
THAT RECEIVES THE TREATMENT 

2741
01:45:45,049 --> 01:45:49,287
WHILE YOU ARE TRYING TO SURVIVE.

2742
01:45:49,287 --> 01:45:51,255
SO THERE'S LONG-TERM PROBLEMS 

2743
01:45:51,255 --> 01:45:53,157
AND ISSUES SURVIVORS FACE AFTER 

2744
01:45:53,157 --> 01:45:53,457
TREATMENT.

2745
01:45:53,457 --> 01:45:56,394
I TRULY BELIEVE NURSING IS THE 

2746
01:45:56,394 --> 01:45:59,830
MOST FOCUSED PROFESSIONAL TO 

2747
01:45:59,830 --> 01:46:01,699
ADVOCATE FOR PATIENTS BECAUSE WE

2748
01:46:01,699 --> 01:46:06,137
COLLECT THE DATA, STORE IT AND 

2749
01:46:06,137 --> 01:46:07,471
DISSEMINATE IT TO ENSURE 

2750
01:46:07,471 --> 01:46:08,940
PATIENTS HAVE THE BEST QUALITY 

2751
01:46:08,940 --> 01:46:11,242
OUTCOME AFTER THEY HAVE 

2752
01:46:11,242 --> 01:46:14,578
SURVIVORED CANCER.

2753
01:46:14,578 --> 01:46:16,380
NEXT SLIDE.

2754
01:46:16,380 --> 01:46:19,817
SO FOR US, LOOKING AT THE 

2755
01:46:19,817 --> 01:46:21,419
CARDIOVASCULAR JOURNEY, EVEN 

2756
01:46:21,419 --> 01:46:23,354
THOUGH IT IS IN THE BRAIN, THE 

2757
01:46:23,354 --> 01:46:24,922
BRAIN HAS A CARDIOVASCULAR 

2758
01:46:24,922 --> 01:46:26,290
COMPONENT TO IT.

2759
01:46:26,290 --> 01:46:29,226
SO THERE IS A COST AND TRADEOFF 

2760
01:46:29,226 --> 01:46:30,628
WHILE YOU SURVIVE TO THE ACTUAL 

2761
01:46:30,628 --> 01:46:41,339
HEART, IN TERMS OF DISRHYTHMIAS,

2762
01:46:44,709 --> 01:46:47,411
WHAT IS THE FERTILITY STATUS.

2763
01:46:47,411 --> 01:46:49,380
DID THE OTHER ORR DWANS GET THE 

2764
01:46:49,380 --> 01:46:51,248
PROFUSION NEEDED.

2765
01:46:51,248 --> 01:46:52,950
THAT GOES FOR BOTH MEN AND 

2766
01:46:52,950 --> 01:46:53,551
GIRLS, TOO.

2767
01:46:53,551 --> 01:46:57,822
AND SO AS THEY TRANSITION FROM 

2768
01:46:57,822 --> 01:47:00,291
THOSE PEDIATRIC EPISODES OF 

2769
01:47:00,291 --> 01:47:01,892
SURVIVING CANCER OR MAYBE THEY 

2770
01:47:01,892 --> 01:47:03,995
ARE IN ADOLESCENTS AND YOUNG 

2771
01:47:03,995 --> 01:47:06,230
ADULTS AND THEY HAVE TO 

2772
01:47:06,230 --> 01:47:08,432
TRANSITION, WE OFTEN FORGET AS 

2773
01:47:08,432 --> 01:47:11,602
PARENTS, AS CAREGIVERS, YES, 

2774
01:47:11,602 --> 01:47:14,038
THEY ARE TRANSITIONING, BUT WHEN

2775
01:47:14,038 --> 01:47:17,141
THEY BECOME AN ADULT WE OFTEN 

2776
01:47:17,141 --> 01:47:18,442
CREATE SITUATIONS WE HAD NOT 

2777
01:47:18,442 --> 01:47:21,946
ANTICIPATED AND IF WE INTERVENE 

2778
01:47:21,946 --> 01:47:27,284
SOONER WITH THE CARDIAC 

2779
01:47:27,284 --> 01:47:29,320
SPECIALIST WE CAN PRESERVE 

2780
01:47:29,320 --> 01:47:31,222
REPRODUCTIVE HISTORY AS WELL AS 

2781
01:47:31,222 --> 01:47:34,625
THEIR INTIMACY AND POTENTIAL FOR

2782
01:47:34,625 --> 01:47:36,127
HAVING THOSE LONG-TERM 

2783
01:47:36,127 --> 01:47:37,028
RELATIONSHIPS AS AN DOESN'T.

2784
01:47:37,028 --> 01:47:42,333
NEXT SLIDE.

2785
01:47:42,333 --> 01:47:44,101
WHEN WE THINK ABOUT THE 

2786
01:47:44,101 --> 01:47:45,202
SURVIVORSHIP RATES IN THE UNITED

2787
01:47:45,202 --> 01:47:47,238
STATES AND THESE STATISTICS WERE

2788
01:47:47,238 --> 01:47:53,277
BACK FROM 2019, 247 PEOPLE DIE 

2789
01:47:53,277 --> 01:47:55,479
EVERY HOUR BECAUSE OF LACK OF 

2790
01:47:55,479 --> 01:47:56,480
CANCER RESOURCES.

2791
01:47:56,480 --> 01:47:58,149
AND WE MAY THINK THAT IS NOT A 

2792
01:47:58,149 --> 01:48:00,384
GREAT NUMBER, BUT DURING COVID 

2793
01:48:00,384 --> 01:48:04,388
WE CALLED THIS AN EPIDEMIC AND A

2794
01:48:04,388 --> 01:48:04,655
PANDEMIC.

2795
01:48:04,655 --> 01:48:06,957
WHEN WE THINK ABOUT IT ANNUALLY 

2796
01:48:06,957 --> 01:48:10,694
IN 2022, WE HAD ALMOST 700,000 

2797
01:48:10,694 --> 01:48:12,430
PEOPLE DIE JUST FROM CANCER 

2798
01:48:12,430 --> 01:48:14,298
ALONE AND THIS WAS BECAUSE THEY 

2799
01:48:14,298 --> 01:48:16,634
DIDN'T HAVE THE ACTUAL ACCESS TO

2800
01:48:16,634 --> 01:48:18,369
CARE OR RESOURCES THAT THEY WERE

2801
01:48:18,369 --> 01:48:20,538
ABLE TO BE AND WERE DIAGNOSED 

2802
01:48:20,538 --> 01:48:22,673
MUCH LATER IN LIFE.

2803
01:48:22,673 --> 01:48:25,509
BUT STILL, 700,000 PEOPLE 

2804
01:48:25,509 --> 01:48:28,913
ANNUALLY IS A SIGNIFICANT 

2805
01:48:28,913 --> 01:48:29,146
NUMBER.

2806
01:48:29,146 --> 01:48:30,948
BUT THEN LET'S LOOK AT THE SPEND

2807
01:48:30,948 --> 01:48:35,186
WE DO EVERY YEAR.

2808
01:48:35,186 --> 01:48:35,953
$87.4 TRILLION.

2809
01:48:35,953 --> 01:48:39,523
I WILL SAY IN PEDIATRIC AND 

2810
01:48:39,523 --> 01:48:42,993
ADOLESCENTS CARE,LESS THAN 1% IS

2811
01:48:42,993 --> 01:48:45,429
ALLOCATED TO ANY DATA, DRUG 

2812
01:48:45,429 --> 01:48:46,230
RESEARCH OR DRUG DEVELOPMENT.

2813
01:48:46,230 --> 01:48:51,202
AND SO WE HAVE TO BE REALISTIC 

2814
01:48:51,202 --> 01:48:52,470
IN WHAT'S HAPPENING HERE.

2815
01:48:52,470 --> 01:48:56,073
AND AS IT SAYS UNDERNEATH HERE, 

2816
01:48:56,073 --> 01:48:57,942
WHEN WE ARE LOOKING FOR QUALITY 

2817
01:48:57,942 --> 01:49:00,978
OF LIFE, WHAT COMES AFTER YOU 

2818
01:49:00,978 --> 01:49:01,212
SURVIVE?

2819
01:49:01,212 --> 01:49:03,514
NONE OF THESE DOLLARS ARE 

2820
01:49:03,514 --> 01:49:05,015
ALLOCATED TOWARDS WHAT COMES 

2821
01:49:05,015 --> 01:49:06,016
AFTER, WHAT COMES NEXT.

2822
01:49:06,016 --> 01:49:07,885
SO IT IS IMPORTANT TO HAVE 

2823
01:49:07,885 --> 01:49:11,455
SOMETHING AS A RESOURCE TO LEAN 

2824
01:49:11,455 --> 01:49:12,022
TO.

2825
01:49:12,022 --> 01:49:14,592
FOR MYSELF, MY DAUGHTER'S CANCER

2826
01:49:14,592 --> 01:49:15,559
WAS EXTRAORDINARILY RARE AND SO 

2827
01:49:15,559 --> 01:49:18,696
THERE WAS ACTUALLY NOTHING 

2828
01:49:18,696 --> 01:49:20,531
AVAILABLE TO TURN TO.

2829
01:49:20,531 --> 01:49:22,366
AS HEALTH CARE PROVIDERS WE WANT

2830
01:49:22,366 --> 01:49:25,002
TO DO NO HARM, WE WANT TO BE 

2831
01:49:25,002 --> 01:49:28,072
ABLE TO INTERCEDE OR AT LEAST 

2832
01:49:28,072 --> 01:49:30,608
MAKE LIFE BETTER FOR HOWEVER 

2833
01:49:30,608 --> 01:49:31,742
LONG THAT IT.

2834
01:49:31,742 --> 01:49:33,010
WHEN YOU DON'T EVEN HAVE A PLACE

2835
01:49:33,010 --> 01:49:36,647
TO TURN AND YOU ARE IN A 

2836
01:49:36,647 --> 01:49:38,516
POPULACE CENTER, WHAT DOES THE 

2837
01:49:38,516 --> 01:49:41,652
RURAL HEALTH HAVE AVAILABLE TO 

2838
01:49:41,652 --> 01:49:41,952
THEM?

2839
01:49:41,952 --> 01:49:43,787
THESE ARE THINGS THAT CAME TO 

2840
01:49:43,787 --> 01:49:45,222
MIND AS I THOUGHT ABOUT WHAT WAS

2841
01:49:45,222 --> 01:49:48,325
NEEDED AND WHAT I WANTED TO DO.

2842
01:49:48,325 --> 01:49:49,293
NEXT SLIDE.

2843
01:49:49,293 --> 01:49:51,128
SO WHEN WE LOOK AT BRAIN CANCER 

2844
01:49:51,128 --> 01:49:53,664
CARE AND CARDIOVASCULAR, THERE 

2845
01:49:53,664 --> 01:49:56,700
ARE DISTINCT HEALTH DISPARITIES.

2846
01:49:56,700 --> 01:49:58,402
THE WORLD HEALTH ORGANIZATION 

2847
01:49:58,402 --> 01:50:02,840
ASKED US BY 2023 TO FOCUS ON 

2848
01:50:02,840 --> 01:50:03,741
CARDIOVASCULAR HEALTH AND 

2849
01:50:03,741 --> 01:50:03,974
STROKE.

2850
01:50:03,974 --> 01:50:06,177
MOST OF THE TIME IN THAT 

2851
01:50:06,177 --> 01:50:08,579
STATISTICAL DATA, PEDIATRIC 

2852
01:50:08,579 --> 01:50:09,647
BRAIN POPULATION IS LEFT OUT.

2853
01:50:09,647 --> 01:50:12,850
WHO WE ARE REALLY DICTATES HOW 

2854
01:50:12,850 --> 01:50:13,951
WE EXPRESS CANCERS AND TREATMENT

2855
01:50:13,951 --> 01:50:15,553
AND RESPONSES TO THE 

2856
01:50:15,553 --> 01:50:16,654
CARDIOVASCULAR SYSTEM.

2857
01:50:16,654 --> 01:50:19,690
WHEN YOU THINK OF IN THE 

2858
01:50:19,690 --> 01:50:21,926
PEDIATRIC SPACE, AT THE AGE OF 

2859
01:50:21,926 --> 01:50:24,395
12 IN THESE PEDIATRIC CENTERS 

2860
01:50:24,395 --> 01:50:26,697
YOU ARE CONSIDERED AN ADULT, YET

2861
01:50:26,697 --> 01:50:29,099
THE DOSING THEY GIVE YOU IS AT A

2862
01:50:29,099 --> 01:50:31,468
CHILD LEVEL OF THE MAXIMUM LEVEL

2863
01:50:31,468 --> 01:50:41,178
OF 75KILO GRAMS.

2864
01:50:41,178 --> 01:50:43,080
THEY WEIGH MUCH MORE THAN THAT.

2865
01:50:43,080 --> 01:50:45,883
THEY END UP RECEIVING SUB 

2866
01:50:45,883 --> 01:50:47,418
STANDARD CARE BECAUSE THEY WERE 

2867
01:50:47,418 --> 01:50:48,819
TRANSITIONING FROM ONE FACILITY 

2868
01:50:48,819 --> 01:50:51,789
THAT IS PEDIATRIC FOCUSED TO THE

2869
01:50:51,789 --> 01:50:53,424
ADULT CENTER AND MOST OFTEN 

2870
01:50:53,424 --> 01:50:56,560
THERE IS NO HANDOFF BETWEEN THE 

2871
01:50:56,560 --> 01:50:57,661
PEDIATRICIAN AND ADULT 

2872
01:50:57,661 --> 01:50:57,962
SPECIALIST.

2873
01:50:57,962 --> 01:50:59,597
YOU TURN 16, IT IS TIME TO 

2874
01:50:59,597 --> 01:51:01,298
PREPARE TO TRANSITION TO THAT 

2875
01:51:01,298 --> 01:51:05,569
PHYSICIAN AND OFF YOU GO.

2876
01:51:05,569 --> 01:51:11,942
AND THAT ADOLESCENT, THAT 

2877
01:51:11,942 --> 01:51:12,610
PEDIATRIC PATIENT DOESN'T 

2878
01:51:12,610 --> 01:51:13,410
UNDERSTAND THEIR HISTORY THAT 

2879
01:51:13,410 --> 01:51:14,979
GOES WITH THEM AND OFTEN THEY 

2880
01:51:14,979 --> 01:51:17,848
DON'T WANT THE PARENT TO BE 

2881
01:51:17,848 --> 01:51:18,782
INVOLVED IN THOSE CONVERSATIONS 

2882
01:51:18,782 --> 01:51:20,084
BECAUSE GRANTED THEY ARE AN 

2883
01:51:20,084 --> 01:51:21,485
ADULT AND THEY SURVIVED.

2884
01:51:21,485 --> 01:51:23,554
SO ONE TREATMENT DOES NOT FIT 

2885
01:51:23,554 --> 01:51:27,625
ALL IN ANY SIZE OR CATEGORY IN 

2886
01:51:27,625 --> 01:51:30,461
PEDIATRICS, ADOLESCENTS.

2887
01:51:30,461 --> 01:51:35,532
WE CAN SWOMEWHAT DO IN ADULT 

2888
01:51:35,532 --> 01:51:37,234
CANCERS BUT EVEN THEN WE ARE 

2889
01:51:37,234 --> 01:51:38,168
FINDING IT DOESN'T WORK FROM THE

2890
01:51:38,168 --> 01:51:38,669
TOP DOWN.

2891
01:51:38,669 --> 01:51:41,138
WE HAVE TO LOOK AT THE NUANCED 

2892
01:51:41,138 --> 01:51:41,405
APPROACH.

2893
01:51:41,405 --> 01:51:41,739
NEXT SLIDE.

2894
01:51:41,739 --> 01:51:43,140
SO HERE ARE THE PROBLEMS THAT WE

2895
01:51:43,140 --> 01:51:45,142
FOUND LOOKING AT THE DATA.

2896
01:51:45,142 --> 01:51:48,245
AND IT IS THREE THINGS.

2897
01:51:48,245 --> 01:51:49,713
POOR PATIENT EDUCATION.

2898
01:51:49,713 --> 01:51:52,883
LIMITED ACCESS TO THERAPEUTICS 

2899
01:51:52,883 --> 01:51:56,487
AND SILOED SYSTEM NAVIGATION.

2900
01:51:56,487 --> 01:51:57,821
WHERE YOU ENTER YOUR HEALTH CARE

2901
01:51:57,821 --> 01:52:00,124
SYSTEM WILL ACTUALLY DICTATE THE

2902
01:52:00,124 --> 01:52:02,259
LEVEL OF CARE AND TREATMENT 

2903
01:52:02,259 --> 01:52:04,261
OPTIONS THAT YOU RECEIVE.

2904
01:52:04,261 --> 01:52:05,863
FOR EXAMPLE, YOUR ZIP CODE AND 

2905
01:52:05,863 --> 01:52:07,431
YOUR TAX BASE WILL DETERMINE 

2906
01:52:07,431 --> 01:52:10,968
WHAT YOUR INSURANCE WILL PAY.

2907
01:52:10,968 --> 01:52:14,138
IF YOU WENT TO A COMMUNITY 

2908
01:52:14,138 --> 01:52:15,205
HOSPITAL VERSUS AN ACADEMIC 

2909
01:52:15,205 --> 01:52:17,241
CENTER OF EXCELLENCE OR VERSUS A

2910
01:52:17,241 --> 01:52:19,710
CANCER CENTER, THAT WILL GREATLY

2911
01:52:19,710 --> 01:52:23,447
IMPACT YOUR OUTCOME, YOUR ACCESS

2912
01:52:23,447 --> 01:52:26,350
TO CLINICAL RESEARCHERS AND 

2913
01:52:26,350 --> 01:52:26,784
CLINICAL TRIALS.

2914
01:52:26,784 --> 01:52:29,987
IF YOU LIVE IN AN URBAN CENTER 

2915
01:52:29,987 --> 01:52:32,222
VERSUS A RURAL CENTER YOU MAY 

2916
01:52:32,222 --> 01:52:34,491
NOT HAVE THOSE SPECIALISTS, BUT 

2917
01:52:34,491 --> 01:52:36,427
DEPENDING ON WHERE YOU LIVE, YOU

2918
01:52:36,427 --> 01:52:39,063
MAY LIVE JUST OUTSIDE OF THE 

2919
01:52:39,063 --> 01:52:40,397
BARRIER OF FIVE MILES 

2920
01:52:40,397 --> 01:52:43,267
SURROUNDING YOU AND SO YOU END 

2921
01:52:43,267 --> 01:52:45,102
UP BEING IN A HEALTH CARE DESERT

2922
01:52:45,102 --> 01:52:47,137
FOR DIAGNOSIS, TREATMENT AND 

2923
01:52:47,137 --> 01:52:48,072
ACCESS TO THOSE RESEARCHERS 

2924
01:52:48,072 --> 01:52:48,305
ANYWAY.

2925
01:52:48,305 --> 01:52:51,542
NEXT SLIDE.

2926
01:52:51,542 --> 01:52:55,412
SO WHAT WE FOUND IS THAT IF WE 

2927
01:52:55,412 --> 01:52:57,514
USE QUALITY OF LIFE METHODOLOGY 

2928
01:52:57,514 --> 01:53:01,985
AND WE HAVE ACCESS TO A ROBUST 

2929
01:53:01,985 --> 01:53:03,721
DATA SET THAT SAYS WHAT IS 

2930
01:53:03,721 --> 01:53:05,589
AVAILABLE THAT IS NOT RESTRICTED

2931
01:53:05,589 --> 01:53:07,091
BY YOUR INSURANCE COMPANY, YOUR 

2932
01:53:07,091 --> 01:53:09,793
ZIP CODE OR THE STATE YOU LIVED 

2933
01:53:09,793 --> 01:53:12,463
IN, YOU ACTUALLY HAVE BETTER 

2934
01:53:12,463 --> 01:53:12,896
OUTCOMES.

2935
01:53:12,896 --> 01:53:15,966
AND IT WAS SHOWN THROUGH COVID 

2936
01:53:15,966 --> 01:53:17,668
THAT VIRTUAL NURSING CARE 

2937
01:53:17,668 --> 01:53:19,903
ACTUALLY IMPROVED OUTCOMES IF 

2938
01:53:19,903 --> 01:53:24,541
THE PATIENT COULD BE CONNECTED 

2939
01:53:24,541 --> 01:53:26,009
AND HAVE ACCESS WITH THEM.

2940
01:53:26,009 --> 01:53:28,212
SO WE FEEL THAT WHOLISTIC 

2941
01:53:28,212 --> 01:53:30,247
APPROACH WITH NURSING BEST 

2942
01:53:30,247 --> 01:53:33,217
PRACTICES, NURSING LED, ACTUALLY

2943
01:53:33,217 --> 01:53:38,856
IMPROVE PARTIAL  -- PATIENT 

2944
01:53:38,856 --> 01:53:40,391
OUTCOMES AND SAVED LIVES.

2945
01:53:40,391 --> 01:53:45,028
IN THAT TRIAD, IF YOU REMOVE 

2946
01:53:45,028 --> 01:53:46,797
ANYTHING, YOU ACTUALLY SAVE THAT

2947
01:53:46,797 --> 01:53:47,564
PERSON'S LIFE.

2948
01:53:47,564 --> 01:53:49,400
WE ARE NOW SEEING PATIENTS 

2949
01:53:49,400 --> 01:53:51,301
LIVING LONGER WITH CHRONIC 

2950
01:53:51,301 --> 01:53:52,770
DISEASE AND WITH BETTER 

2951
01:53:52,770 --> 01:53:53,370
OUTCOMES.

2952
01:53:53,370 --> 01:53:58,876
I THINK WE CAN DO JUST A BIT 

2953
01:53:58,876 --> 01:53:59,443
MORE.

2954
01:53:59,443 --> 01:54:00,811
NEXT SLIDE.

2955
01:54:00,811 --> 01:54:03,280
SO WE ALSO FEEL UNDER THE 

2956
01:54:03,280 --> 01:54:04,648
CLINICAL DECISION SUPPORT TREE 

2957
01:54:04,648 --> 01:54:06,750
IF YOU BRING IN QUALITY OF LIFE 

2958
01:54:06,750 --> 01:54:08,685
DATA THAT THE PATIENT REPORTED 

2959
01:54:08,685 --> 01:54:11,622
OUTCOMES ARE TELLING US, EITHER 

2960
01:54:11,622 --> 01:54:16,794
USING AN ECOLOGICAL MONETARY 

2961
01:54:16,794 --> 01:54:18,562
ASSESSMENT OR A SAFETY SLEEP 

2962
01:54:18,562 --> 01:54:21,198
ACTIVITY FATIGUE AND TASK 

2963
01:54:21,198 --> 01:54:22,266
EFFECTIVENESS, YOU ACTUALLY CAN 

2964
01:54:22,266 --> 01:54:24,668
CHANGE THE TRAJECTORY AND 

2965
01:54:24,668 --> 01:54:26,503
PROVIDE BETTER KNOWLEDGE, BETTER

2966
01:54:26,503 --> 01:54:30,240
SATISFACTION WHILE PATIENTS ARE 

2967
01:54:30,240 --> 01:54:31,141
ENDURING CLINICAL CHEMOTHERAPY 

2968
01:54:31,141 --> 01:54:34,077
OR RADIATION OR WHATEVER 

2969
01:54:34,077 --> 01:54:36,747
TREATMENT THEY HAVE DECIDED.

2970
01:54:36,747 --> 01:54:38,549
BUT ALSO BEING STAKEHOLDERS AND 

2971
01:54:38,549 --> 01:54:40,651
BEING LISTENED TO, YOU CAN 

2972
01:54:40,651 --> 01:54:43,387
ACTUALLY HAVE BETTER OVERALL 

2973
01:54:43,387 --> 01:54:45,289
SURVIVORSHIP OUTCOMES.

2974
01:54:45,289 --> 01:54:47,191
INCLUDING WHEN SIDE EFFECTS 

2975
01:54:47,191 --> 01:54:49,092
HAPPEN, YOU'LL INTERVENE EARLIER

2976
01:54:49,092 --> 01:54:51,295
BECAUSE YOU WILL BE TRACKING IT,

2977
01:54:51,295 --> 01:54:53,764
THE PATIENT IS AWARE AND BECOMES

2978
01:54:53,764 --> 01:54:55,165
AN ACTIVE PARTICIPANT.

2979
01:54:55,165 --> 01:54:57,000
THAT NEEDS TO HAPPEN AT ALL 

2980
01:54:57,000 --> 01:54:57,334
LEVELS.

2981
01:54:57,334 --> 01:55:00,037
WHERE IT IS LOOKING AT THE LAB 

2982
01:55:00,037 --> 01:55:05,509
RESULTS, CLINICAL SUPPORT, CURE,

2983
01:55:05,509 --> 01:55:07,911
LOOKING AT THE DATA ANALYTIC.

2984
01:55:07,911 --> 01:55:09,613
WHATEVER THE THERAPEUTIC LIST IS

2985
01:55:09,613 --> 01:55:12,716
MEANING WHAT ARE THE 

2986
01:55:12,716 --> 01:55:14,017
MEDICATIONINGMEDICATIONS

2987
01:55:14,017 --> 01:55:15,886
THEY ARE TAKING.

2988
01:55:15,886 --> 01:55:17,888
UNDERSTANDING FULLY WHAT THAT 

2989
01:55:17,888 --> 01:55:19,256
MEANS AND EXPLAINING IT TO THEM 

2990
01:55:19,256 --> 01:55:21,692
AT A LEVEL THEY UNDERSTAND.

2991
01:55:21,692 --> 01:55:21,992
NEXT SLIDE.

2992
01:55:21,992 --> 01:55:24,528
SO WE FOCUSED HERE MOSTLY ON 

2993
01:55:24,528 --> 01:55:29,132
RURAL HEALTH AND THE REASON WHY 

2994
01:55:29,132 --> 01:55:30,834
WE DID THAT VERY QUICKLY, THE 

2995
01:55:30,834 --> 01:55:37,474
REASON WHY WE DID THAT IS TO 

2996
01:55:37,474 --> 01:55:38,842
STAY WHEN HURRICANES COME, WHO 

2997
01:55:38,842 --> 01:55:41,645
ARE THE MOST PEOPLE IMPACTED?

2998
01:55:41,645 --> 01:55:43,780
IT'S USUALLY DOWN IN THE 

2999
01:55:43,780 --> 01:55:46,250
PANHANDLE OF FLORIDA OR UP THE 

3000
01:55:46,250 --> 01:55:51,021
EAST COAST OR SOMEWHERE IN THE 

3001
01:55:51,021 --> 01:55:51,221
GULF.

3002
01:55:51,221 --> 01:55:55,792
WHEN YOU LOOK AT THE HEALTH CARE

3003
01:55:55,792 --> 01:55:59,196
THAT'S AVAILABLE, MOST OFTEN IT 

3004
01:55:59,196 --> 01:56:01,632
IS THE RURAL CITIES, 1,500 OR 

3005
01:56:01,632 --> 01:56:03,734
LESS POPULATIONS THAT ARE 

3006
01:56:03,734 --> 01:56:04,234
IMPACTED.

3007
01:56:04,234 --> 01:56:06,637
AND SO HOW CAN WE DISCERN THIS 

3008
01:56:06,637 --> 01:56:07,905
DATA AND MAKE SURE WE REACH INTO

3009
01:56:07,905 --> 01:56:11,308
THESE AREAS AND ENSURE THAT ALL 

3010
01:56:11,308 --> 01:56:12,609
PEOPLE WITHIN THE UNITED STATES 

3011
01:56:12,609 --> 01:56:15,913
HAVE EQUAL ACCESS AND 

3012
01:56:15,913 --> 01:56:20,617
OPPORTUNITY TO WHAT THE CARE AND

3013
01:56:20,617 --> 01:56:22,185
THE ADDITIONAL SUPPORT THAT THEY

3014
01:56:22,185 --> 01:56:22,920
WOULD NEED.

3015
01:56:22,920 --> 01:56:24,521
BECAUSE WHERE YOU START IN 

3016
01:56:24,521 --> 01:56:26,189
CANCER IS NOT WHERE YOU FINISH.

3017
01:56:26,189 --> 01:56:29,560
AND YOU MAY HAVE PREEXISTING 

3018
01:56:29,560 --> 01:56:31,395
CONDITIONS OR CHRONIC CONDITIONS

3019
01:56:31,395 --> 01:56:34,298
WHILE YOU ARE GOING THROUGH 

3020
01:56:34,298 --> 01:56:34,698
CANCER.

3021
01:56:34,698 --> 01:56:35,799
BUT THEN THEY STAY.

3022
01:56:35,799 --> 01:56:37,401
THESE CHRONIC CONDITIONS STAY.

3023
01:56:37,401 --> 01:56:38,835
THEY DON'T ALWAYS RESOLVE.

3024
01:56:38,835 --> 01:56:41,238
OR IF YOU ARE NOT LIVING A 

3025
01:56:41,238 --> 01:56:42,873
HEALTHY LIFESTYLE IN THE FIRST 

3026
01:56:42,873 --> 01:56:45,576
PLACE, HOW DO WE MANAGE THAT AND

3027
01:56:45,576 --> 01:56:47,477
BEST APPROACH WHERE YOU ARE AND 

3028
01:56:47,477 --> 01:56:49,179
GIVE YOU THE CLINICAL SUPPORT 

3029
01:56:49,179 --> 01:56:52,382
THAT YOU NEED TO LIVE LONGER, 

3030
01:56:52,382 --> 01:56:58,288
BETTER AFTER WITH QUALITY AND 

3031
01:56:58,288 --> 01:56:58,655
HAPPINESS.

3032
01:56:58,655 --> 01:56:59,656
NEXT SLIDE.

3033
01:56:59,656 --> 01:57:01,024
SO WHAT WE FOUND, PATIENTS WANT 

3034
01:57:01,024 --> 01:57:01,491
TO KNOW.

3035
01:57:01,491 --> 01:57:02,693
THEY WANT TO KNOW.

3036
01:57:02,693 --> 01:57:03,894
THEY WANT ACCESS.

3037
01:57:03,894 --> 01:57:05,996
IF THEY ARE RURAL, WHY DO THEY 

3038
01:57:05,996 --> 01:57:09,266
HAVE TO WAIT UNTIL THEY GO TO AN

3039
01:57:09,266 --> 01:57:11,935
ACADEMIC CENTER TO BE CONNECTED?

3040
01:57:11,935 --> 01:57:17,307
'BUT WHEN WE LOOK AT IT GREATER,

3041
01:57:17,307 --> 01:57:18,342
THE UNIVERSITY OF NORTH CAROLINA

3042
01:57:18,342 --> 01:57:22,145
AND UPMC AND VANDERBILT 

3043
01:57:22,145 --> 01:57:23,380
UNIVERSITY GOT TOGETHER AND 

3044
01:57:23,380 --> 01:57:24,514
POLLED THEIR PATIENTS TO SEE 

3045
01:57:24,514 --> 01:57:26,283
WHAT THEY WANT TO KNOW.

3046
01:57:26,283 --> 01:57:27,684
GOOD, BAD, OR UGLY.

3047
01:57:27,684 --> 01:57:30,420
DO THEY HAVE ACCESS TO THEIR 

3048
01:57:30,420 --> 01:57:31,088
MEDICAL INFORMATION?

3049
01:57:31,088 --> 01:57:34,658
AND WHAT WE FOUND IS 96% OF 

3050
01:57:34,658 --> 01:57:35,425
THOSE PATIENTS WANT TO KNOW 

3051
01:57:35,425 --> 01:57:38,161
THEIR TEST RESULTS.

3052
01:57:38,161 --> 01:57:39,363
ABSOLUTELY WANT TO KNOW.

3053
01:57:39,363 --> 01:57:41,565
AND THEY DON'T CARE IF IT IS 

3054
01:57:41,565 --> 01:57:41,765
GOOD.

3055
01:57:41,765 --> 01:57:43,800
THEY DON'T CARE IF IT IS BAD.

3056
01:57:43,800 --> 01:57:45,335
FOR THOSE THAT DIDN'T WANT TO 

3057
01:57:45,335 --> 01:57:47,371
KNOW, IT WAS LITERALLY 

3058
01:57:47,371 --> 01:57:50,807
STATISTICALLY INSIGNIFICANT AT 

3059
01:57:50,807 --> 01:57:51,775
0.005%.

3060
01:57:51,775 --> 01:57:55,979
THE REST OF THEM WERE IT DIDN'T 

3061
01:57:55,979 --> 01:57:57,347
MATTER AND IT'S NOT GOING TO 

3062
01:57:57,347 --> 01:57:59,816
CHANGE HOW I FEEL ABOUT WANTING 

3063
01:57:59,816 --> 01:58:00,384
TO KNOW.

3064
01:58:00,384 --> 01:58:03,553
SO BASICALLY ALL OF THAT IS 96%.

3065
01:58:03,553 --> 01:58:05,722
WE THEN LOOKED INTO THE QUESTION

3066
01:58:05,722 --> 01:58:07,290
OF BUYER'S REMORSE.

3067
01:58:07,290 --> 01:58:09,826
ONCE YOU KNOW, DO YOU NOT WANT 

3068
01:58:09,826 --> 01:58:10,093
TO?

3069
01:58:10,093 --> 01:58:12,796
THEY SAID, NOPE, WANT TO KNOW.

3070
01:58:12,796 --> 01:58:14,531
ALSO, CAN WE ACCESS THE DATA IN 

3071
01:58:14,531 --> 01:58:16,500
THE WAY THEY NEED TO IN THE WAY 

3072
01:58:16,500 --> 01:58:17,534
THEY WANT TO?

3073
01:58:17,534 --> 01:58:18,568
SO NEXT SLIDE.

3074
01:58:18,568 --> 01:58:20,437
I WILL JUST PRESENT ON THAT AND 

3075
01:58:20,437 --> 01:58:24,307
I WILL FINISH UP.

3076
01:58:24,608 --> 01:58:27,477
WHAT WE FOUND IS GRANDMOTHERS TO

3077
01:58:27,477 --> 01:58:30,080
6-YEAR-OLDS ARE USING SOME DATA 

3078
01:58:30,080 --> 01:58:30,981
TOOLS, SOME ARTIFICIAL 

3079
01:58:30,981 --> 01:58:33,650
INTELLIGENCE TO GET ACCESS TO 

3080
01:58:33,650 --> 01:58:34,317
INFORMATION.

3081
01:58:34,317 --> 01:58:35,352
AS A MATTER OF FACT, MY 

3082
01:58:35,352 --> 01:58:37,454
GRANDMOTHER, MY MOM, SHE GETS 

3083
01:58:37,454 --> 01:58:39,389
HER GRANDCHILDREN TO HELP HER 

3084
01:58:39,389 --> 01:58:41,258
LOG INTO HER MEDICAL DATA AND 

3085
01:58:41,258 --> 01:58:43,894
MAKE SURE THAT SHE CAN HAVE 

3086
01:58:43,894 --> 01:58:47,097
ACCESS TO IT, HELP WITH WRITING 

3087
01:58:47,097 --> 01:58:47,664
APPEALS INSURANCE.

3088
01:58:47,664 --> 01:58:49,332
AND MOST OF THE PATIENTS SAY 

3089
01:58:49,332 --> 01:58:56,073
THEY HAVE LESS STRESS, THEY HAVE

3090
01:58:56,073 --> 01:58:59,276
LESS SENSE OF URGENCY AND 

3091
01:58:59,276 --> 01:59:01,445
ANXIETY USING THESE AI TOOLS.

3092
01:59:01,445 --> 01:59:03,814
WHEN WE TRANSITION THAT INTO 

3093
01:59:03,814 --> 01:59:05,282
OVERALL PATIENT OUTCOMES, WHY 

3094
01:59:05,282 --> 01:59:06,249
AREN'T WE DOING THIS?

3095
01:59:06,249 --> 01:59:07,851
WE SHOULD DO THIS.

3096
01:59:07,851 --> 01:59:08,819
WE SHOULD ALLOW THEM.

3097
01:59:08,819 --> 01:59:10,587
WE HAVE TO LOOK AT HOSPITAL 

3098
01:59:10,587 --> 01:59:12,255
POLICIES AND WHAT IS PREVENTING 

3099
01:59:12,255 --> 01:59:14,758
PATIENTS FROM HAVING THEIR 

3100
01:59:14,758 --> 01:59:17,060
ACCESS BECAUSE A HAPPY PATIENT 

3101
01:59:17,060 --> 01:59:18,829
IS A PATIENT THAT RECEIVES 

3102
01:59:18,829 --> 01:59:19,930
QUALITY CARE.

3103
01:59:19,930 --> 01:59:21,698
AND A PATIENT THAT IS 

3104
01:59:21,698 --> 01:59:23,300
KNOWLEDGEABLE OF THEIR CARE IS A

3105
01:59:23,300 --> 01:59:26,203
PATIENT WHO IS AN ACTIVE 

3106
01:59:26,203 --> 01:59:28,071
PARTICIPANT AND ABLE TO ASSIST 

3107
01:59:28,071 --> 01:59:30,273
THE HEALTH CARE PROVIDER AND 

3108
01:59:30,273 --> 01:59:31,241
EVERYONE ELSE IN THEIR CARE.

3109
01:59:31,241 --> 01:59:37,314
AND SO THAT'S HOW WE USE DATA 

3110
01:59:37,314 --> 01:59:39,483
LOOKING AT DEFINITIVE RULES IN 

3111
01:59:39,483 --> 01:59:41,384
REDUCING STRESS, REMOVING THE 

3112
01:59:41,384 --> 01:59:43,720
PAIN POINTS AND HELPING THEM 

3113
01:59:43,720 --> 01:59:44,421
NAVIGATE ALL THE DIFFERENT CARE 

3114
01:59:44,421 --> 01:59:44,654
SYSTEMS.

3115
01:59:44,654 --> 01:59:48,592
THANK YOU.

3116
01:59:48,592 --> 01:59:50,260
>> THANK YOU SO MUCH, MS. 

3117
01:59:50,260 --> 01:59:50,494
PROSSER.

3118
01:59:50,494 --> 01:59:51,795
THAT WAS LOVELY.

3119
01:59:51,795 --> 01:59:55,232
WE WILL NOW HEAR FROM DR. ALEX 

3120
01:59:55,232 --> 01:59:55,499
CARLISLE.

3121
01:59:55,499 --> 01:59:57,934
DR. CARLISLE HOLDS A PH.D. IN 

3122
01:59:57,934 --> 02:00:01,004
BIOCHEMISTRY AND MOLECULAR 

3123
02:00:01,004 --> 02:00:02,906
BIOLOGY FROM HOWARD UNIVERSITY 

3124
02:00:02,906 --> 02:00:05,041
AND RECEIVED POST DOCTORAL 

3125
02:00:05,041 --> 02:00:06,009
TRAINING AT NIH.

3126
02:00:06,009 --> 02:00:08,645
HE APPLIES DATA ANALYTIC 

3127
02:00:08,645 --> 02:00:09,946
APPROACHES TO UNDERSTAND DISEASE

3128
02:00:09,946 --> 02:00:11,648
PROGRESSION AND HOW TO PREVENT 

3129
02:00:11,648 --> 02:00:12,048
IT.

3130
02:00:12,048 --> 02:00:16,019
AT NIH HE DEVELOPED 

3131
02:00:16,019 --> 02:00:19,322
BIOINFORMATIIC TOOLS.

3132
02:00:19,322 --> 02:00:23,927
LATER WHILE AT NORTHUP GRUMMAN 

3133
02:00:23,927 --> 02:00:25,729
HELP HE CREATED A PROTOTYPE IN 

3134
02:00:25,729 --> 02:00:29,599
THE CLOUD AND LATER LED THE 

3135
02:00:29,599 --> 02:00:31,668
DEVELOPMENT OF A PROTOTYPE FOR 

3136
02:00:31,668 --> 02:00:34,938
PREDICTING TUMOR STAGE AND 

3137
02:00:34,938 --> 02:00:38,341
HEALTH OUTCOME IN NEUROBLASTOMA 

3138
02:00:38,341 --> 02:00:40,143
PATIENTS.

3139
02:00:40,143 --> 02:00:50,654
HE IS CROW OF -- CEO FOR THE 

3140
02:00:55,559 --> 02:00:57,294
NATIONAL ACCELERATOR FOR 

3141
02:00:57,294 --> 02:00:59,496
DISCOVERY IN PRECISION HEALTH.

3142
02:00:59,496 --> 02:01:00,931
WELCOME, DR. CARLISLE.

3143
02:01:00,931 --> 02:01:02,899
>> THANK YOU FOR THAT 

3144
02:01:02,899 --> 02:01:03,266
INTRODUCTION.

3145
02:01:03,266 --> 02:01:04,734
IT IS A PLEASURE TO BE HERE.

3146
02:01:04,734 --> 02:01:06,803
WHAT I HOPE AND THE PLACING OF 

3147
02:01:06,803 --> 02:01:09,506
MY TALK WAS SPOT ON BECAUSE I'M 

3148
02:01:09,506 --> 02:01:12,108
HOPEFUL THAT I WILL SORT OF 

3149
02:01:12,108 --> 02:01:13,810
RECAPITULATE MUCH OF WHAT WAS 

3150
02:01:13,810 --> 02:01:16,046
HEARD, BUT FRAME THAT FROM A 

3151
02:01:16,046 --> 02:01:17,881
PERSPECTIVE OF WOMEN'S HEALTH 

3152
02:01:17,881 --> 02:01:19,149
AND SOME OF THE THINGS WE NEED 

3153
02:01:19,149 --> 02:01:21,284
TO DO TO APPLY DATA INNOVATION 

3154
02:01:21,284 --> 02:01:25,121
IN THAT AREA TO ADVANCE MORE 

3155
02:01:25,121 --> 02:01:27,090
PRECISION-BASED APPROACHES TO 

3156
02:01:27,090 --> 02:01:28,825
IMPROVING WOMEN'S HEALTH CARE.

3157
02:01:28,825 --> 02:01:37,300
NEXT SHLIDE.

3158
02:01:37,300 --> 02:01:38,869
WE ARE THE NATIONAL ACCELERATOR 

3159
02:01:38,869 --> 02:01:40,637
FOR DISCOVERY IN PRECISION 

3160
02:01:40,637 --> 02:01:40,904
HEALTH.

3161
02:01:40,904 --> 02:01:43,173
WE WORK AT THE INTERSECTION OF 

3162
02:01:43,173 --> 02:01:49,446
RESEARCH, T TECHNOLOGY AND 

3163
02:01:49,446 --> 02:01:50,046
REAL-WORLD EVIDENCE.

3164
02:01:50,046 --> 02:02:00,323
WE ARE TRYING TO IMPROVE HEALTH 

3165
02:02:00,323 --> 02:02:02,726
OUTCOMES, STRENGTHEN OUR SYSTEMS

3166
02:02:02,726 --> 02:02:04,861
AND LEAD TO A HEALTHIER NATION.

3167
02:02:04,861 --> 02:02:06,930
THIS IS INFORMED THROUGH 

3168
02:02:06,930 --> 02:02:07,530
COLLABORATIVE MODEL.

3169
02:02:07,530 --> 02:02:09,132
WE WORK WITH POPULATIONS THAT 

3170
02:02:09,132 --> 02:02:11,268
ARE IMPACTED BY THE WORK OR 

3171
02:02:11,268 --> 02:02:13,103
FIELD OF STUDY WE ARE ENGAGED IN

3172
02:02:13,103 --> 02:02:17,107
AND WE DO THAT THROUGHOUT THE 

3173
02:02:17,107 --> 02:02:19,476
ENTIRE LIFE CYCLE OF THAT WORK.

3174
02:02:19,476 --> 02:02:22,345
THIS IS CO-DESIGN, 

3175
02:02:22,345 --> 02:02:22,846
CO-IMPLEMENTATION, 

3176
02:02:22,846 --> 02:02:24,614
CO-GOVERNANCE, BE IT POLICY, 

3177
02:02:24,614 --> 02:02:26,249
PROGRAM, RESEARCH STUDY OR 

3178
02:02:26,249 --> 02:02:26,683
TECHNOLOGY ITSELF.

3179
02:02:26,683 --> 02:02:28,985
THAT IS REALLY THE FUNDAMENTAL 

3180
02:02:28,985 --> 02:02:31,621
THINGS THAT DRIVES US AT NADPH.

3181
02:02:31,621 --> 02:02:34,057
WE ARE INTERCEPTIONAL AND IT 

3182
02:02:34,057 --> 02:02:36,159
REALLY MAKES THE RESEARCH AND 

3183
02:02:36,159 --> 02:02:38,328
OUTCOMES MUCH MORE ROBUST.

3184
02:02:38,328 --> 02:02:43,033
TO THAT EFFECT, WE ARE ACTUALLY 

3185
02:02:43,033 --> 02:02:45,335
WORKING AS WE DISCOVER NEW 

3186
02:02:45,335 --> 02:02:46,002
THINGS ABOUT HEALTH.

3187
02:02:46,002 --> 02:02:49,372
WE HAVE BEEN HEARING ABOUT THE 

3188
02:02:49,372 --> 02:02:50,740
MULTIDIMENSIONALITY OF THAT IN 

3189
02:02:50,740 --> 02:02:51,741
PREVIOUS TALKS.

3190
02:02:51,741 --> 02:02:54,144
ALL THIS IS CONVERGING ON AN 

3191
02:02:54,144 --> 02:02:55,178
EVOLVING UNDERSTANDING OF HEALTH

3192
02:02:55,178 --> 02:02:59,316
AND WHAT THAT IS, HEALTH 

3193
02:02:59,316 --> 02:02:59,783
ONTOLOGY.

3194
02:02:59,783 --> 02:03:02,752
SUPPORT AT NADPH WE CREATED A 

3195
02:03:02,752 --> 02:03:06,923
FRAMEWORK THAT CONSISTENTS OF 

3196
02:03:06,923 --> 02:03:07,757
CLOUD-BASED DATA INFRASTRUCTURE,

3197
02:03:07,757 --> 02:03:11,027
STRONG ETHICS AND GOVERNANCE 

3198
02:03:11,027 --> 02:03:12,963
MODELS AND VERY ACTIVATED 

3199
02:03:12,963 --> 02:03:18,468
NATIONAL ECOSYSTEM THAT REALLY 

3200
02:03:18,468 --> 02:03:20,270
SPANS THE DIRECT COMMUNITY 

3201
02:03:20,270 --> 02:03:23,239
NETWORK, ACROSS ACADEMIA AND THE

3202
02:03:23,239 --> 02:03:23,840
TECHNOLOGY INDUSTRY.

3203
02:03:23,840 --> 02:03:26,576
WE ARE DOING THAT TO COMBINE 

3204
02:03:26,576 --> 02:03:28,478
REAL-WORLD EVIDENCE WITH DATA 

3205
02:03:28,478 --> 02:03:29,846
ACROSS THE DIMENSIONALITY OF THE

3206
02:03:29,846 --> 02:03:31,281
VARIOUS DOMAINS.

3207
02:03:31,281 --> 02:03:33,550
THAT INCLUDES BIOLOGY, BEHAVIOR,

3208
02:03:33,550 --> 02:03:35,452
ENVIRONMENT, SOCIAL AND SYSTEMS 

3209
02:03:35,452 --> 02:03:36,252
LEVEL DATA.

3210
02:03:36,252 --> 02:03:38,989
ALL THIS REALLY ADVANCED 

3211
02:03:38,989 --> 02:03:40,590
DISCOVERY AND GENERATE 

3212
02:03:40,590 --> 02:03:42,459
MEANINGFUL HEALTH INSIGHTS.

3213
02:03:42,459 --> 02:03:46,062
NEXT SLIDE, PLEASE.

3214
02:03:46,062 --> 02:03:48,164
SO WHEN WE LOOK AT WOMEN'S 

3215
02:03:48,164 --> 02:03:51,267
HEALTH, I THINK IT IS IMPORTANT 

3216
02:03:51,267 --> 02:03:55,205
FOR US TO REALLY HAVE AN 

3217
02:03:55,205 --> 02:03:56,373
UNDERSTANDING OF WHAT ARE THE 

3218
02:03:56,373 --> 02:03:58,241
THINGS THAT ARE DRIVING WOMEN'S 

3219
02:03:58,241 --> 02:04:00,010
HEALTH AND MORE IMPORTANTLY, 

3220
02:04:00,010 --> 02:04:03,313
REPORT OUTCOMES THAT ARE 

3221
02:04:03,313 --> 02:04:04,614
OCCURRING IN WOMEN'S HEALTH AND 

3222
02:04:04,614 --> 02:04:06,416
TRY TO UNDERSTAND HOW WE WORK 

3223
02:04:06,416 --> 02:04:08,051
TOGETHER TO IMPROVE THAT HEALTH.

3224
02:04:08,051 --> 02:04:11,021
THE RESEARCH GENERALLY, BUT MORE

3225
02:04:11,021 --> 02:04:13,356
SPECIFICALLY, THROUGH DATA 

3226
02:04:13,356 --> 02:04:13,790
INNOVATION.

3227
02:04:13,790 --> 02:04:15,825
SO, AGAIN, THIS REALLY LOOKS, 

3228
02:04:15,825 --> 02:04:17,060
BEGINS WITH LOOKING AT 

3229
02:04:17,060 --> 02:04:18,194
FUNDAMENTALLY THE STATE OF 

3230
02:04:18,194 --> 02:04:18,795
WOMEN'S HEALTH.

3231
02:04:18,795 --> 02:04:20,497
WHAT ARE THE CONDITIONS THAT ARE

3232
02:04:20,497 --> 02:04:24,868
MOST HEAVILY IMPACTING WOMEN'S 

3233
02:04:24,868 --> 02:04:25,668
HEALTH?

3234
02:04:25,668 --> 02:04:27,670
HOW WELL ARE WE DOING INCLUDING 

3235
02:04:27,670 --> 02:04:29,672
WOMEN IN THE RESEARCH CAPTURING 

3236
02:04:29,672 --> 02:04:31,307
NECESSARY DATA TO HELP STUDY AND

3237
02:04:31,307 --> 02:04:33,143
UNDERSTAND THESE CONDITIONS.

3238
02:04:33,143 --> 02:04:36,513
AND THEN THAT DATA BEING 

3239
02:04:36,513 --> 02:04:38,314
CLINICAL IN NATURE AND 

3240
02:04:38,314 --> 02:04:40,350
REAL-WORLD OUTCOMES, HOW ARE WE 

3241
02:04:40,350 --> 02:04:42,252
DOING AT CAPTURING THAT DATA.

3242
02:04:42,252 --> 02:04:45,488
GENERALLY, WHAT WE ARE SEEING IS

3243
02:04:45,488 --> 02:04:46,656
AN IMPROVEMENT IN REPRESENTATION

3244
02:04:46,656 --> 02:04:47,857
OF WOMEN IN RESEARCH.

3245
02:04:47,857 --> 02:04:49,526
WE STILL HAVE SOME AREAS WE NEED

3246
02:04:49,526 --> 02:04:50,560
TO IMPROVE ON.

3247
02:04:50,560 --> 02:04:53,196
IF WE LOOK AT THE BIGGEST AREAS 

3248
02:04:53,196 --> 02:04:54,931
OF HEALTH CONCERN FOR WOMEN, WE 

3249
02:04:54,931 --> 02:04:58,168
SEE THAT WE NEED TO IMPROVE ON 

3250
02:04:58,168 --> 02:05:00,670
INCLUDING WOMEN IN CLINICAL 

3251
02:05:00,670 --> 02:05:00,870
TRIAL.

3252
02:05:00,870 --> 02:05:02,272
THERE HAS BEEN SOME IMPROVEMENT,

3253
02:05:02,272 --> 02:05:03,773
BUT MORE IMPORTANTLY, WE NEED TO

3254
02:05:03,773 --> 02:05:07,410
DO A BETTER JOB OF INCLUDING 

3255
02:05:07,410 --> 02:05:09,913
WOMEN IN THE REAL-WORLD EVIDENCE

3256
02:05:09,913 --> 02:05:10,313
PROCESS.

3257
02:05:10,313 --> 02:05:13,416
IF YOU LOOK AT THE VARIOUS 

3258
02:05:13,416 --> 02:05:17,287
DISORDERS THAT ARE MOST HEAVILY 

3259
02:05:17,287 --> 02:05:18,354
IMPACTING WOMEN'S HEALTH, YOU 

3260
02:05:18,354 --> 02:05:19,189
CAN SEE THAT.

3261
02:05:19,189 --> 02:05:21,224
WHILE WE NEED TO HAVE MORE 

3262
02:05:21,224 --> 02:05:22,492
REPRESENTATION OF WOMEN'S DATA 

3263
02:05:22,492 --> 02:05:24,327
IN RESEARCH TO IMPROVE 

3264
02:05:24,327 --> 02:05:25,395
UNDERSTANDING IN WOMEN'S HEALTH,

3265
02:05:25,395 --> 02:05:28,164
WE NEED TO DO A BETTER JOB OF 

3266
02:05:28,164 --> 02:05:30,100
INVOLVING WOMEN IN THAT PROCESS.

3267
02:05:30,100 --> 02:05:34,704
SO IF WE GO TO THE NEXT SLIDE.

3268
02:05:34,704 --> 02:05:37,240
SO IN ORDER TO DO THAT MORE 

3269
02:05:37,240 --> 02:05:38,741
EFFECTIVELY, WE NEED TO 

3270
02:05:38,741 --> 02:05:40,677
UNDERSTAND WHAT ARE THE BARRIERS

3271
02:05:40,677 --> 02:05:42,178
TO WOMEN PARTICIPATING IN THE 

3272
02:05:42,178 --> 02:05:44,080
RESEARCH THAT GENERATES THAT 

3273
02:05:44,080 --> 02:05:45,148
DATA?

3274
02:05:45,148 --> 02:05:47,550
IF WE LOOK AT THOSE BARRIERS, 

3275
02:05:47,550 --> 02:05:52,755
THEY ARE MULTIFACTORIAL AND SPAN

3276
02:05:52,755 --> 02:05:58,695
VARIOUS STRAT OF SOCIETY, 

3277
02:05:58,695 --> 02:06:01,631
ECONOMIC, EDUCATION, LOGISTICS 

3278
02:06:01,631 --> 02:06:03,967
IN HOW WE DESIGN RESEARCH 

3279
02:06:03,967 --> 02:06:05,101
STUDIES AND EXTRACT DATA AND 

3280
02:06:05,101 --> 02:06:05,969
SHARE THAT.

3281
02:06:05,969 --> 02:06:09,539
THE THINGS HIGHLIGHTS IN RED ARE

3282
02:06:09,539 --> 02:06:15,912
AREAS THAT ARE DISPROPORTIONATE 

3283
02:06:15,912 --> 02:06:16,479
IN WOMEN.

3284
02:06:16,479 --> 02:06:21,050
THERE ARE HIGHER OUT OF POCKET 

3285
02:06:21,050 --> 02:06:24,020
EXPENSES FOR HEALTH CARE COSTS 

3286
02:06:24,020 --> 02:06:24,587
CONNECTED WITH WOMEN.

3287
02:06:24,587 --> 02:06:26,890
THAT IS A BARRIER FOR WOMEN 

3288
02:06:26,890 --> 02:06:28,424
PARTICIPATING IN HEALTH CARE IN 

3289
02:06:28,424 --> 02:06:31,127
GENERAL AND CERTAINLY ANYTHING 

3290
02:06:31,127 --> 02:06:31,828
INVOLVING HEALTH CARE RESEARCH.

3291
02:06:31,828 --> 02:06:33,429
SOCIAL DYNAMICS.

3292
02:06:33,429 --> 02:06:34,764
OFTENTIMES IN OUR SOCIETY, WOMEN

3293
02:06:34,764 --> 02:06:36,399
ARE THE PRIMARY CAREGIVERS AND 

3294
02:06:36,399 --> 02:06:39,636
WITH THAT COMES AN ENORMOUS 

3295
02:06:39,636 --> 02:06:41,004
RESPONSIBILITY IN TERMS OF 

3296
02:06:41,004 --> 02:06:42,305
MAKING SURE FAMILY IS FIRST AND 

3297
02:06:42,305 --> 02:06:43,273
PUTTING THAT CARE OF FAMILY 

3298
02:06:43,273 --> 02:06:44,607
BEFORE THEIR OWN CARE.

3299
02:06:44,607 --> 02:06:46,442
SO THAT IS SOMETHING WE NEED TO 

3300
02:06:46,442 --> 02:06:51,080
BE COGNIZANT ABOUT AS WE LOOK TO

3301
02:06:51,080 --> 02:06:52,815
INVOLVE WOMEN MORE GREATLY IN 

3302
02:06:52,815 --> 02:06:53,082
RESEARCH.

3303
02:06:53,082 --> 02:06:57,053
AND THEN, OF COURSE, FROM A 

3304
02:06:57,053 --> 02:07:00,456
STUDY DESIGN, WE ARE IMPROVING 

3305
02:07:00,456 --> 02:07:03,293
UPON THAT BUT WE NEED TO BE MORE

3306
02:07:03,293 --> 02:07:06,796
INTENTIONAL IN DESIGNING THE 

3307
02:07:06,796 --> 02:07:08,932
STUDIES AND CRITERIA TO 

3308
02:07:08,932 --> 02:07:10,166
INCORPORATING WOMEN.

3309
02:07:10,166 --> 02:07:11,868
THE IMPACTS OF THIS ARE 

3310
02:07:11,868 --> 02:07:12,869
INTUITIVE OF THE 

3311
02:07:12,869 --> 02:07:13,303
UNDERREPRESENTATION.

3312
02:07:13,303 --> 02:07:14,804
WHEN WE HAVE THAT LACK OF 

3313
02:07:14,804 --> 02:07:16,773
REPRESENTATION OF WOMEN IN 

3314
02:07:16,773 --> 02:07:19,475
RESEARCH, WE ARE JUST NOT GOING 

3315
02:07:19,475 --> 02:07:21,144
TO HAVE SUFFICIENT AMOUNT OF 

3316
02:07:21,144 --> 02:07:22,845
SCIENTIFIC DATA WE NEED TO 

3317
02:07:22,845 --> 02:07:23,713
BETTER UNDERSTAND DISEASE AND 

3318
02:07:23,713 --> 02:07:27,717
MORE IMPORTANTLY, THE IMPACT 

3319
02:07:27,717 --> 02:07:29,886
THAT IT CAN HAVE ON INCIDENT 

3320
02:07:29,886 --> 02:07:30,954
OUTCOMES, THERAPEUTIC RESPONSE 

3321
02:07:30,954 --> 02:07:31,888
AND THOSE THINGS.

3322
02:07:31,888 --> 02:07:33,957
AND SO THAT'S GOING TO CERTAINLY

3323
02:07:33,957 --> 02:07:37,427
RESULT IN LESS EFFECTIVE HEALTH 

3324
02:07:37,427 --> 02:07:37,627
CARE.

3325
02:07:37,627 --> 02:07:40,196
AND WE SEE THINGS LIKE LESS 

3326
02:07:40,196 --> 02:07:43,666
EFFICIENT OR DIAGNOSES, 

3327
02:07:43,666 --> 02:07:45,101
MISDIAGNOSES, LIMITS 

3328
02:07:45,101 --> 02:07:46,302
UNDERSTANDING OF HOW DRUGS WORK 

3329
02:07:46,302 --> 02:07:48,905
IN WOMEN AND THEN THE SIDE 

3330
02:07:48,905 --> 02:07:50,273
EFFECTS ASSOCIATED WITH WHATEVER

3331
02:07:50,273 --> 02:07:51,207
DRUGS ARE BEING USED.

3332
02:07:51,207 --> 02:07:53,309
SO WE NEED TO HAVE A BETTER 

3333
02:07:53,309 --> 02:07:54,510
UNDERSTANDING OF THOSE THINGS, 

3334
02:07:54,510 --> 02:07:57,213
BUT IT REALLY STARTS BY MAKING 

3335
02:07:57,213 --> 02:07:59,415
SURE WE ADDRESS THOSE BARRIERS 

3336
02:07:59,415 --> 02:08:00,783
OF PARTICIPATION BY WOMEN IN 

3337
02:08:00,783 --> 02:08:01,551
HEALTH RESEARCH.

3338
02:08:01,551 --> 02:08:07,757
NEXT SLIDE, PLEASE.

3339
02:08:07,757 --> 02:08:09,792
SO GETTING INCREASED 

3340
02:08:09,792 --> 02:08:11,127
REPRESENTATION OF WOMEN AND MORE

3341
02:08:11,127 --> 02:08:12,428
WOMEN'S HEALTH DATA IS ONE PART 

3342
02:08:12,428 --> 02:08:13,096
OF IT.

3343
02:08:13,096 --> 02:08:16,699
ALSO WE NEED TO DO A BETTER JOB 

3344
02:08:16,699 --> 02:08:18,468
AT THE DATA SCIENCE AND POLICY 

3345
02:08:18,468 --> 02:08:18,968
LEVEL.

3346
02:08:18,968 --> 02:08:20,770
WE NEED TO HAVE BETTER DATA 

3347
02:08:20,770 --> 02:08:22,605
SCIENCE AND POLICY PRACTICES IN 

3348
02:08:22,605 --> 02:08:23,039
PLACE.

3349
02:08:23,039 --> 02:08:25,174
FROM A DATA SCIENCE PERSPECTIVE,

3350
02:08:25,174 --> 02:08:27,910
ONE OF THE AREAS WE REALLY NEED 

3351
02:08:27,910 --> 02:08:31,381
TO FOCUS ON IS DOING A BETTER 

3352
02:08:31,381 --> 02:08:32,815
JOB AND BEING MORE INTENTIONAL 

3353
02:08:32,815 --> 02:08:35,518
OF HAVING SYSTEMS IN PLACE TO 

3354
02:08:35,518 --> 02:08:36,986
DISAGGREGATE THAT DATA.

3355
02:08:36,986 --> 02:08:38,821
THERE ARE VERY REAL DIFFERENCES 

3356
02:08:38,821 --> 02:08:43,660
BETWEEN MEN AND WOMEN, MOST 

3357
02:08:43,660 --> 02:08:49,432
NOTABLY BIOLOGICALLY AND PHY

3358
02:08:49,432 --> 02:08:49,799
PHYSIOLOGICALLY.

3359
02:08:49,799 --> 02:08:51,901
WE NEED TO HAVE A BETTER 

3360
02:08:51,901 --> 02:08:56,372
UNDERSTANDING OF WHAT EFFECTS 

3361
02:08:56,372 --> 02:09:00,243
ARE DRIVEN BY SEX.

3362
02:09:00,243 --> 02:09:01,944
THIS STARTS WITH DISAGGREGATING 

3363
02:09:01,944 --> 02:09:04,747
THE DATA TO SEE WHAT CORRELATES 

3364
02:09:04,747 --> 02:09:05,148
WITH SEX.

3365
02:09:05,148 --> 02:09:08,851
MANY NUANCES, SELF-REPORTED 

3366
02:09:08,851 --> 02:09:11,054
DATDATA

3367
02:09:11,054 --> 02:09:11,654
SOCIAL DETERMINANTS OF HEALTH.

3368
02:09:11,654 --> 02:09:12,388
WE HEARD THAT.

3369
02:09:12,388 --> 02:09:14,457
MOST OF THESE THINGS ARE 

3370
02:09:14,457 --> 02:09:16,759
CAPTURED THROUGH REAL-WORLD 

3371
02:09:16,759 --> 02:09:17,026
EVIDENCE.

3372
02:09:17,026 --> 02:09:20,029
THIS DATA EXISTS.

3373
02:09:20,029 --> 02:09:22,865
SOME IS STRUCTURED, SOME 

3374
02:09:22,865 --> 02:09:23,199
UNSTRUCTURED.

3375
02:09:23,199 --> 02:09:25,268
WE NEED TO DO A BETTER JOB OF 

3376
02:09:25,268 --> 02:09:26,269
USING IT.

3377
02:09:26,269 --> 02:09:29,672
FROM A DATA POLICY PERSPECTIVE, 

3378
02:09:29,672 --> 02:09:33,710
IT CAN BE A KEY -- BY HAVING 

3379
02:09:33,710 --> 02:09:36,179
DATA POLICIES IN PLACE, 

3380
02:09:36,179 --> 02:09:38,181
INCREASED COMMERCIALIZATION OF 

3381
02:09:38,181 --> 02:09:39,182
DATA AND INFORMATION RESOURCES 

3382
02:09:39,182 --> 02:09:42,685
IT IS SAFE TO SAY DATA HAS 

3383
02:09:42,685 --> 02:09:43,986
ARGUABLY BECOME THE NUMBER ONE 

3384
02:09:43,986 --> 02:09:45,188
COMMODITY IN THE WORLD TODAY.

3385
02:09:45,188 --> 02:09:48,091
WITH THAT COMES IMMENSE 

3386
02:09:48,091 --> 02:09:50,059
EXPLOITATION AND THEN ISSUES OF 

3387
02:09:50,059 --> 02:09:50,259
TRUST.

3388
02:09:50,259 --> 02:09:50,493
RIGHT?

3389
02:09:50,493 --> 02:09:52,895
IN TERMS OF WHO IS GOING TO 

3390
02:09:52,895 --> 02:09:54,297
PROFIT THAT?

3391
02:09:54,297 --> 02:09:58,935
HOW IS THAT GOING TO BE USED?

3392
02:09:58,935 --> 02:10:05,908
HAVING STRONG DATA PRIVACY, 

3393
02:10:05,908 --> 02:10:08,111
PROVENANCE, WHO FUNDAMENTALLY 

3394
02:10:08,111 --> 02:10:10,680
OWNS IT AND THEN ACCESS 

3395
02:10:10,680 --> 02:10:11,614
AUTHORIZATION POLICIES.

3396
02:10:11,614 --> 02:10:13,683
SO HAVING THOSE STRONG POLICIES 

3397
02:10:13,683 --> 02:10:15,585
IN PLACE ARE GOING TO BE 

3398
02:10:15,585 --> 02:10:17,453
CRITICAL TO BEING ABLE TO 

3399
02:10:17,453 --> 02:10:20,323
UTILIZE OR BETTER UTILIZE 

3400
02:10:20,323 --> 02:10:22,392
EXISTING DATA BUT INCREASE 

3401
02:10:22,392 --> 02:10:24,327
PARTICIPATION IN WOMEN OR ANY 

3402
02:10:24,327 --> 02:10:25,561
POPULATION QUITE FRANKLY IN THE 

3403
02:10:25,561 --> 02:10:27,597
RESEARCH TO FOLLOW THAT WOULD 

3404
02:10:27,597 --> 02:10:28,398
GENERATE NEW DATA.

3405
02:10:28,398 --> 02:10:30,733
WE NEED TO DO A BETTER JOB OF 

3406
02:10:30,733 --> 02:10:31,067
THAT.

3407
02:10:31,067 --> 02:10:32,568
MORE DATA IS GOOD AND NEEDED, 

3408
02:10:32,568 --> 02:10:35,638
BUT WE'VE GOT TO DO A BETTER JOB

3409
02:10:35,638 --> 02:10:37,940
OF USING EXISTING DATA.

3410
02:10:37,940 --> 02:10:41,711
NEXT SLIDE, PLEASE.

3411
02:10:41,711 --> 02:10:44,514
SO I JUST WANTED TO SORT OF 

3412
02:10:44,514 --> 02:10:47,283
ILLUMINATE SOME OF THE AREAS OF 

3413
02:10:47,283 --> 02:10:48,885
DATA INNOVATION TO ADVANCE 

3414
02:10:48,885 --> 02:10:50,420
PRECISION HEALTH IN WOMEN.

3415
02:10:50,420 --> 02:10:51,554
WE LOOK AT DATA INFRASTRUCTURE.

3416
02:10:51,554 --> 02:10:53,556
SOME OF THE INNOVATIONS NEEDED 

3417
02:10:53,556 --> 02:10:56,893
THERE REALLY STANDARDIZATION AND

3418
02:10:56,893 --> 02:10:58,961
INTEGRATED, MORE STANDARDIZED 

3419
02:10:58,961 --> 02:11:00,963
AND INTEGRATED HEALTH 

3420
02:11:00,963 --> 02:11:01,531
INFRASTRUCTURE.

3421
02:11:01,531 --> 02:11:04,434
INFRASTRUCTURE THAT INCORPORATE 

3422
02:11:04,434 --> 02:11:09,906
GE GENOMICS, PRIVACY BANK 

3423
02:11:09,906 --> 02:11:12,942
FRAMEWORKS TO ENSURE ETHICALLY 

3424
02:11:12,942 --> 02:11:14,477
SOURCED DATA AND SHARING.

3425
02:11:14,477 --> 02:11:16,846
THIS IS GOING TO ENABLE MORE 

3426
02:11:16,846 --> 02:11:18,981
ACTIONABLE INSIGHTS AND ENHANCE 

3427
02:11:18,981 --> 02:11:21,150
THE OVERALL QUALITY OF WOMEN'S 

3428
02:11:21,150 --> 02:11:22,885
HEALTH CARE RESEARCH AND THEIR 

3429
02:11:22,885 --> 02:11:25,188
INCLUSION IN RESEARCH TO BEGIN 

3430
02:11:25,188 --> 02:11:25,455
WITH.

3431
02:11:25,455 --> 02:11:27,824
FROM AN ANALYTIC STANDPOINT, WE 

3432
02:11:27,824 --> 02:11:30,359
NEED TO GET MORE REAL-WORLD 

3433
02:11:30,359 --> 02:11:33,296
EVIDENCE INTO THE DATA MODELS.

3434
02:11:33,296 --> 02:11:35,131
AND THEN WE CERTAINLY NEED, AS 

3435
02:11:35,131 --> 02:11:37,033
WE ARE SEEING ACROSS ALL OF 

3436
02:11:37,033 --> 02:11:39,368
RESEARCH, TO GET MORE APPLIED AI

3437
02:11:39,368 --> 02:11:41,337
INTO RESEARCH AND START TO 

3438
02:11:41,337 --> 02:11:44,540
GENERATE PREDICTIVE MODELS BASED

3439
02:11:44,540 --> 02:11:47,276
ON THE INCREASED DIMENSIONALITY 

3440
02:11:47,276 --> 02:11:48,711
OF THIS DATA AND THESE MODELS 

3441
02:11:48,711 --> 02:11:50,847
THAT ARE GENERALIZABLE, MORE 

3442
02:11:50,847 --> 02:11:53,282
ROBUST AND THAT CAN DO A BETTER 

3443
02:11:53,282 --> 02:11:56,352
JOB OF PREDICTING RISK OUTCOME, 

3444
02:11:56,352 --> 02:11:57,253
THERAPEUTIC RESPONSE AND THOSE 

3445
02:11:57,253 --> 02:11:58,287
TYPES OF THINGS.

3446
02:11:58,287 --> 02:12:00,490
THAT IS WHERE WE HAVE SOME 

3447
02:12:00,490 --> 02:12:02,925
INNOVATION AROUND THE ANALYTICS.

3448
02:12:02,925 --> 02:12:03,226
ENGAGEMENT.

3449
02:12:03,226 --> 02:12:05,061
SO AGAIN, THIS IS REALLY 

3450
02:12:05,061 --> 02:12:07,196
SOMETHING THAT I THINK THE STATE

3451
02:12:07,196 --> 02:12:12,401
WISHES NADPH, AS WE DO THINGS 

3452
02:12:12,401 --> 02:12:13,469
LIKE DATA SCIENCE DEVELOPMENT 

3453
02:12:13,469 --> 02:12:15,705
AND TECHNOLOGY AND 

3454
02:12:15,705 --> 02:12:17,540
IMPLEMENTATION, WE WORK FROM AN 

3455
02:12:17,540 --> 02:12:19,442
INCLUSIVE MODEL WHERE WE ARE 

3456
02:12:19,442 --> 02:12:21,010
CO-DESIGNING DEVELOPING THOSE 

3457
02:12:21,010 --> 02:12:21,244
THINGS.

3458
02:12:21,244 --> 02:12:22,512
FROM AN ENGAGEMENT STANDPOINT WE

3459
02:12:22,512 --> 02:12:25,848
HAVE TO HAVE MORE INCLUSIVE 

3460
02:12:25,848 --> 02:12:28,217
GOVERNANCE AND USER CENTERED 

3461
02:12:28,217 --> 02:12:29,318
APPROACHED TO DOING EVERYTHING.

3462
02:12:29,318 --> 02:12:31,754
THAT GOES FROM HOW WE DESIGN AND

3463
02:12:31,754 --> 02:12:36,125
IMPLEMENT REMOTE MONITORING 

3464
02:12:36,125 --> 02:12:37,193
DEVICES.

3465
02:12:37,193 --> 02:12:40,496
TO HOW WE DESIGN STUDIES AND 

3466
02:12:40,496 --> 02:12:42,598
DEVELOP AI SYSTEMS AND 

3467
02:12:42,598 --> 02:12:42,965
INFRASTRUCTURE.

3468
02:12:42,965 --> 02:12:46,002
I TALKED ABOUT THE POLICY, SO 

3469
02:12:46,002 --> 02:12:47,603
PRIVACY AND REGULATORY 

3470
02:12:47,603 --> 02:12:49,505
FRAMEWORKS THAT INCENTIVIZE AND 

3471
02:12:49,505 --> 02:12:50,506
SUPPORT PRECISION HEALTH CARE, 

3472
02:12:50,506 --> 02:12:51,774
THOSE ARE THINGS THAT NEED TO 

3473
02:12:51,774 --> 02:12:54,176
COME ON TO LINE, BUT WE ALSO 

3474
02:12:54,176 --> 02:12:55,011
REALLY NEED TO MAKE SURE THAT 

3475
02:12:55,011 --> 02:12:57,246
WOMEN ARE INVOLVED IN THAT 

3476
02:12:57,246 --> 02:12:57,480
PROCESS.

3477
02:12:57,480 --> 02:12:58,648
SO I'M GOING TO STOP THERE.

3478
02:12:58,648 --> 02:13:01,684
I THINK THAT REALLY PAINTS THE 

3479
02:13:01,684 --> 02:13:01,918
PICTURE.

3480
02:13:01,918 --> 02:13:05,054
THERE ARE KEY AREAS WE NEED TO 

3481
02:13:05,054 --> 02:13:06,255
INNOVATE AND MAKE SURE WOMEN ARE

3482
02:13:06,255 --> 02:13:07,723
INCLUDED IN THAT.

3483
02:13:07,723 --> 02:13:14,130
I THINK WE SHOT PAST.

3484
02:13:14,130 --> 02:13:23,139
IF WE GO BACK.

3485
02:13:23,139 --> 02:13:33,416
THOSE AREN'T MY SLIDES.

3486
02:13:33,416 --> 02:13:36,285
>> I CAN STOP SHARING AND
DO YOU

3487
02:13:36,285 --> 02:13:38,020
WANT TO RESHARE?

3488
02:13:38,020 --> 02:13:39,855
>> SURE.

3489
02:13:39,855 --> 02:13:42,758
>> YEAH, ERIC, IF YOU CAN
POP IT

3490
02:13:42,758 --> 02:13:53,002
BACK UP ON 99.

3491
02:13:55,538 --> 02:13:56,572
>> THERE WE GO.

3492
02:13:56,572 --> 02:13:58,074
ALL RIGHT.

3493
02:13:58,074 --> 02:13:58,741
THANK YOU.

3494
02:13:58,741 --> 02:14:01,010
SO HERE I JUST WANTED TO POINT 

3495
02:14:01,010 --> 02:14:03,279
OUT SOME AREAS WHERE WE CAN DO A

3496
02:14:03,279 --> 02:14:13,823
BETTER JOB OF WORKING WITH THE 

3497
02:14:15,625 --> 02:14:16,158
WOMEN'S COMMUNITY TO INVOLVE 

3498
02:14:16,158 --> 02:14:16,792
THEM IN SOME OF THE INNOVATION 

3499
02:14:16,792 --> 02:14:17,426
AROUND AI AND DATA TO EMPOWER, 

3500
02:14:17,426 --> 02:14:17,927
IMPROVE WOMEN'S HEALTH.

3501
02:14:17,927 --> 02:14:18,561
SO YOU ARE LOOKING AT A COUPLE 

3502
02:14:18,561 --> 02:14:21,097
OF AREAS, PARTICIPATORY DATA 

3503
02:14:21,097 --> 02:14:26,135
GOVERNESS, I TALKED ABOUT IT IN 

3504
02:14:26,135 --> 02:14:26,502
PREVIOUS SLIDE.

3505
02:14:26,502 --> 02:14:27,470
HAVING COMMUNITY-LED OVERSIGHT 

3506
02:14:27,470 --> 02:14:30,539
FRAMEWORKS IS REALLY, REALLY 

3507
02:14:30,539 --> 02:14:31,273
CRITICAL.

3508
02:14:31,273 --> 02:14:33,609
CAN'T STRESS THIS ENOUGH.

3509
02:14:33,609 --> 02:14:34,777
THIS IS GOING TO BUILD TRUST.

3510
02:14:34,777 --> 02:14:37,213
I TALKED ABOUT BARRIERS TO 

3511
02:14:37,213 --> 02:14:39,315
ACCESS AND PARTICIPATION.

3512
02:14:39,315 --> 02:14:41,350
WHEN YOU HAVE THOSE GOVERNANCE 

3513
02:14:41,350 --> 02:14:43,419
MODELS THAT ENGENDER TRUST YOU 

3514
02:14:43,419 --> 02:14:45,721
DO BETTER AT GETTING INCLUSION 

3515
02:14:45,721 --> 02:14:47,123
OF WOMEN OR ANY RESEARCH 

3516
02:14:47,123 --> 02:14:49,258
PARTICIPANT IN A STUDY FOR THAT 

3517
02:14:49,258 --> 02:14:49,659
MATTER.

3518
02:14:49,659 --> 02:14:51,727
THESE ARE JUST SOME AREAS RIGHT 

3519
02:14:51,727 --> 02:14:53,329
HERE AND BECAUSE WE HAVE A 

3520
02:14:53,329 --> 02:14:55,865
LITTLE GAP HERE, I WANT TO PICK 

3521
02:14:55,865 --> 02:14:57,266
UP ON SOME TIME HERE.

3522
02:14:57,266 --> 02:14:58,701
SO I'M GOING TO GO TO THE NEXT 

3523
02:14:58,701 --> 02:15:00,970
SLIDE, IF YOU COULD.

3524
02:15:00,970 --> 02:15:07,209
ALL RIGHT.

3525
02:15:07,209 --> 02:15:09,512
AND SO AGAIN, THE TAKE HOME IS 

3526
02:15:09,512 --> 02:15:12,615
HOW DO WE EMPOWER THE 

3527
02:15:12,615 --> 02:15:13,082
POPULATION.

3528
02:15:13,082 --> 02:15:14,850
MEANING IN AN INTENTIONAL WAY 

3529
02:15:14,850 --> 02:15:16,252
HAVING THAT POPULATION, IN THIS 

3530
02:15:16,252 --> 02:15:18,521
CASE WOMEN, BEING INVOLVED IN 

3531
02:15:18,521 --> 02:15:19,288
DIRECTLY GUIDING THE RESEARCH 

3532
02:15:19,288 --> 02:15:22,291
AND INNOVATION PROCESS AND 

3533
02:15:22,291 --> 02:15:24,160
HAVING THESE COMMUNITY-LED 

3534
02:15:24,160 --> 02:15:25,428
STRUCTURES TO REALLY STEWARD 

3535
02:15:25,428 --> 02:15:27,496
EVERYTHING THAT IS HAPPENING TO 

3536
02:15:27,496 --> 02:15:29,632
ENSURE THAT THOSE OUTCOMES ARE 

3537
02:15:29,632 --> 02:15:30,933
RELEVANT, RIGHT?

3538
02:15:30,933 --> 02:15:33,569
AGAIN, HAVING TRANSPARENCY 

3539
02:15:33,569 --> 02:15:35,171
THROUGHOUT THE LIFE CYCLE ACROSS

3540
02:15:35,171 --> 02:15:37,573
ALL OF THE FRAMEWORKS AND THOSE 

3541
02:15:37,573 --> 02:15:39,542
ARE CRITICAL TO ENGENDERING 

3542
02:15:39,542 --> 02:15:41,610
TRUST AND MAKING SURE THERE ARE 

3543
02:15:41,610 --> 02:15:43,579
MINIMAL BARRIERS TO WANTING TO 

3544
02:15:43,579 --> 02:15:45,414
PARTICIPATE IN THE RESEARCH TO 

3545
02:15:45,414 --> 02:15:46,315
BEGIN WITH.

3546
02:15:46,315 --> 02:15:52,722
# IF WE GO TO THE NEXT SLIDE.

3547
02:15:52,722 --> 02:15:55,591
I WANTED TO POINT OUT CRITICAL 

3548
02:15:55,591 --> 02:15:56,992
AREAS IN WOMEN'S HEALTH WHERE 

3549
02:15:56,992 --> 02:16:00,629
THERE ARE DATA GAPS AND AI 

3550
02:16:00,629 --> 02:16:03,499
INNOVATION.

3551
02:16:03,499 --> 02:16:05,735
INADEQUATE REPRESENTATION, 

3552
02:16:05,735 --> 02:16:08,637
FRAGMENTS RECORDS, LIMITED 

3553
02:16:08,637 --> 02:16:11,807
LONGITUDINAL AND REAL WORLD 

3554
02:16:11,807 --> 02:16:12,074
EVIDENCE.

3555
02:16:12,074 --> 02:16:14,176
THESE ARE GOOD FOR AI.

3556
02:16:14,176 --> 02:16:16,879
I WILL TOUCH ON THE TWO AREAS OF

3557
02:16:16,879 --> 02:16:19,281
AI WE ARE MOST FAMILIAR WITH, 

3558
02:16:19,281 --> 02:16:21,183
WHEN WE LOOK AT MACHINE LEARNING

3559
02:16:21,183 --> 02:16:22,585
THIS IS A TREMENDOUS OPPORTUNITY

3560
02:16:22,585 --> 02:16:26,355
TO START TO TRAIN AND DEVELOP 

3561
02:16:26,355 --> 02:16:28,891
ALGORITHMS ON MORE INCLUSIVE AND

3562
02:16:28,891 --> 02:16:30,793
REPRESENTATIVE DATA THAT CAN DO 

3563
02:16:30,793 --> 02:16:32,962
A BETTER JOB OF PREDICTING 

3564
02:16:32,962 --> 02:16:35,097
OUTCOME RISK, THERAPEUTIC 

3565
02:16:35,097 --> 02:16:35,464
RESPONSE.

3566
02:16:35,464 --> 02:16:40,636
THIS CAN POSITIVELY IMPACT ANY 

3567
02:16:40,636 --> 02:16:43,839
NUMBER OF THESE THINGS.

3568
02:16:43,839 --> 02:16:48,978
NADPH WE ARE DOING THIS IN POST 

3569
02:16:48,978 --> 02:16:50,346
PARTUM DEPRESSION AND A NUMBER 

3570
02:16:50,346 --> 02:16:52,348
OF OTHER AREAS.

3571
02:16:52,348 --> 02:16:55,151
ALSO USING ALGORITHMS OR 

3572
02:16:55,151 --> 02:16:59,555
DEVELOPING ALG RITS THAT 

3573
02:16:59,555 --> 02:17:01,357
INCLUDES ELECTRONIC HEALTH 

3574
02:17:01,357 --> 02:17:03,425
RECORD DATA, WEARABLE, CLINICAL 

3575
02:17:03,425 --> 02:17:06,462
AND MOLECULAR DATA AS WE GET TO 

3576
02:17:06,462 --> 02:17:08,731
A MORE MULTIDIMENSIONAL DATA 

3577
02:17:08,731 --> 02:17:10,833
SET, TRAINING THESE MODELS ARE 

3578
02:17:10,833 --> 02:17:13,235
GOING TO LEAD TO MUCH MORE OR 

3579
02:17:13,235 --> 02:17:16,138
TRAINING THESE ALGORITHMS ON 

3580
02:17:16,138 --> 02:17:17,840
MULTS DIMENSIONAL DATA SETS WILL

3581
02:17:17,840 --> 02:17:21,043
LEAD TO MUCH MORE ROBUST MODELS 

3582
02:17:21,043 --> 02:17:23,279
AND WE SHOULD EXPECT PREDICTIONS

3583
02:17:23,279 --> 02:17:25,014
TO BE MORE GENERALIZABLE AND 

3584
02:17:25,014 --> 02:17:27,283
INCREASED ACCURACY.

3585
02:17:27,283 --> 02:17:30,853
THE GENERATIVE AI, SO THIS IS AN

3586
02:17:30,853 --> 02:17:32,955
OPPORTUNITY TO START TO SCAN 

3587
02:17:32,955 --> 02:17:35,491
MASSIVE VOLUMES OF MEDICAL DATA,

3588
02:17:35,491 --> 02:17:39,295
CLINICAL GUIDELINES, TRIAL DATA 

3589
02:17:39,295 --> 02:17:42,598
AND REALLY IDENTIFY GAPS IN 

3590
02:17:42,598 --> 02:17:44,099
EVIDENCE AND MAYBE CONFLICTING 

3591
02:17:44,099 --> 02:17:45,301
POLICIES AND PRACTICES IN 

3592
02:17:45,301 --> 02:17:46,702
WOMEN'S HEALTH, RIGHT?

3593
02:17:46,702 --> 02:17:49,471
THAT WILL REALLY HELP US DRIVE 

3594
02:17:49,471 --> 02:17:50,506
TOWARD STANDARDIZATION.

3595
02:17:50,506 --> 02:17:52,308
AGAIN, SO THAT EVERYTHING THAT 

3596
02:17:52,308 --> 02:17:54,844
COMES FROM THAT WILL BE MORE 

3597
02:17:54,844 --> 02:17:55,978
REPRODUCEABLE AND ULTIMATELY 

3598
02:17:55,978 --> 02:17:57,046
MORE ROBUST.

3599
02:17:57,046 --> 02:17:59,849
THESE ARE JUST TWO AREAS OR WAYS

3600
02:17:59,849 --> 02:18:02,651
THAT MACHINE LEARNING, 

3601
02:18:02,651 --> 02:18:05,154
GENERATIVE AI CAN HELP INNOVATE 

3602
02:18:05,154 --> 02:18:09,792
AROUND WOMEN'S HEALTH DATA AND 

3603
02:18:09,792 --> 02:18:10,426
IMPROO

3604
02:18:10,426 --> 02:18:10,960
IMMOVE OUTCOMES.

3605
02:18:10,960 --> 02:18:13,262
>> I WILL GO TO THE NEXT
SLIDE.

3606
02:18:13,262 --> 02:18:15,998
>> THANK YOU, DR.
CARLISLE.

3607
02:18:15,998 --> 02:18:17,867
IF YOU CAN BRING IT TO A CLOSE.

3608
02:18:17,867 --> 02:18:19,902
>> THIS IS THE LAST SLIDE.

3609
02:18:19,902 --> 02:18:22,371
SO WHAT ARE WE DOING TO SORT OF 

3610
02:18:22,371 --> 02:18:23,372
PUT OUR TEETH INTO THIS?

3611
02:18:23,372 --> 02:18:25,708
AND SO WE HAVE BEEN VERY ACTIVE 

3612
02:18:25,708 --> 02:18:27,610
IN BUILDING COMMUNITY DATA, 

3613
02:18:27,610 --> 02:18:28,110
ECOSYSTEM.

3614
02:18:28,110 --> 02:18:29,712
THIS IS JUST THREE EXAMPLES OF 

3615
02:18:29,712 --> 02:18:35,251
THE WORK WE'VE DONE IN THIS 

3616
02:18:35,251 --> 02:18:37,987
SPACE AND SO THE PROJECT IN 

3617
02:18:37,987 --> 02:18:42,024
SUPPORT OF RWJF FOCUSING ON 

3618
02:18:42,024 --> 02:18:45,494
DEVELOPING RECOMMENDATIONS FOR 

3619
02:18:45,494 --> 02:18:46,562
EQUITABLE, ACCESSIBLE AND 

3620
02:18:46,562 --> 02:18:47,830
ACTIONABLE COMMUNITY DATA 

3621
02:18:47,830 --> 02:18:48,163
SYSTEMS.

3622
02:18:48,163 --> 02:18:51,700
IN THIS WORK WE IMPROVED 

3623
02:18:51,700 --> 02:18:54,603
ENGAGEMENT AND HELPED INFORM 

3624
02:18:54,603 --> 02:18:56,071
STRATEGIES TO ADDRESS HEALTH 

3625
02:18:56,071 --> 02:18:56,372
STRATEGIES.

3626
02:18:56,372 --> 02:18:59,008
IN SUPPORT OF THE CDC THIS 

3627
02:18:59,008 --> 02:19:00,476
PROGRAM INVOLVED GATHERING 

3628
02:19:00,476 --> 02:19:02,011
COMMUNITY PERSPECTIVES ON THE 

3629
02:19:02,011 --> 02:19:05,114
USE OF SURVEY DATA.

3630
02:19:05,114 --> 02:19:07,716
MOST NOTABLY PLACES TO HELP 

3631
02:19:07,716 --> 02:19:10,386
IMPROVE HEALTH OUTCOME AN 

3632
02:19:10,386 --> 02:19:12,087
LEVERAGE COMMUNITY INSIGHTS, 

3633
02:19:12,087 --> 02:19:13,589
LASTLY, OVER THE PAST YEAR AND A

3634
02:19:13,589 --> 02:19:15,791
HALF WE HAVE BEEN ACTIVE IN 

3635
02:19:15,791 --> 02:19:18,127
CREATING THIS NATIONAL ECOSYSTEM

3636
02:19:18,127 --> 02:19:19,795
AROUND MATERNAL HEALTH AND HAD 

3637
02:19:19,795 --> 02:19:22,965
THIS NATIONAL TOWN HALL TO 

3638
02:19:22,965 --> 02:19:25,668
REALLY ENGAGE AT A COMMUNITY 

3639
02:19:25,668 --> 02:19:28,304
LEVEL PEOPLE IN MATERNAL HEALTH 

3640
02:19:28,304 --> 02:19:33,208
SPACE TO DEVELOP INITIATIVES TO 

3641
02:19:33,208 --> 02:19:35,844
ADDRESS POST PARTUM DEPRESSION.

3642
02:19:35,844 --> 02:19:38,213
ON THAT NOTE, I WILL STOP AND 

3643
02:19:38,213 --> 02:19:38,547
THANK YOU.

3644
02:19:38,547 --> 02:19:40,950
>> THANK YOU SO MUCH, DR. 

3645
02:19:40,950 --> 02:19:41,383
CARLISLE.

3646
02:19:41,383 --> 02:19:43,452
WE WILL NOW HERE FROM DR. LIAT 

3647
02:19:43,452 --> 02:19:43,953
SHENHAV.

3648
02:19:43,953 --> 02:19:48,190
DOCTOR SHENHAV IS IN THE 

3649
02:19:48,190 --> 02:19:51,060
DEPARTMENT OF MICROBLOLG AT THE 

3650
02:19:51,060 --> 02:19:53,562
GROSSMAN SCHOOL OF MEDICINE 

3651
02:19:53,562 --> 02:19:54,930
COMPUTER SCIENCE AT THE 

3652
02:19:54,930 --> 02:19:56,699
INSTITUTE FOR MATH MAT SCIENCES 

3653
02:19:56,699 --> 02:20:00,002
AND THE CENTER OR DATA SCIENCE.

3654
02:20:00,002 --> 02:20:03,172
THE PRINCIPLE INVESTIGATOR OF 

3655
02:20:03,172 --> 02:20:06,875
THE SHENHAV LAB TO IMPROVE THE 

3656
02:20:06,875 --> 02:20:08,277
HEALTH OF WOMEN AND CHILDREN 

3657
02:20:08,277 --> 02:20:11,347
WITH FOCUS ON FERTILITY, 

3658
02:20:11,347 --> 02:20:13,248
PREGNANCY AND LACTATION.

3659
02:20:13,248 --> 02:20:19,788
BEFORE JOINING NYU, DR. SHENHAV 

3660
02:20:19,788 --> 02:20:22,024
WAS AT ROCKEFELLER UNIVERSITY.

3661
02:20:22,024 --> 02:20:23,759
SHE HAS A PH.D. IN COMPUTER 

3662
02:20:23,759 --> 02:20:26,095
SCIENCE FROM THE UNIVERSITY OF 

3663
02:20:26,095 --> 02:20:26,895
CALIFORNIA LOS ANGELES.

3664
02:20:26,895 --> 02:20:32,735
WELCOME DR. SHENHAV.

3665
02:20:32,735 --> 02:20:34,436
>> THANK YOU SO MUCH FOR
THIS 

3666
02:20:34,436 --> 02:20:35,170
KIND INTRODUCTION.

3667
02:20:35,170 --> 02:20:36,105
AND THANK YOU FOR THE 

3668
02:20:36,105 --> 02:20:37,306
OPPORTUNITY TO PRESENT MY WORK 

3669
02:20:37,306 --> 02:20:40,709
IN FRONT OF YOU TODAY.

3670
02:20:40,709 --> 02:20:42,511
I'M LIAT SHENHAV.

3671
02:20:42,511 --> 02:20:44,613
I'M ASSISTANT PROFESSOR AT THE 

3672
02:20:44,613 --> 02:20:49,151
INSTITUTE FOR SYSTEMS GENETICS, 

3673
02:20:49,151 --> 02:20:52,688
MICROBIOLOGY, OB/GYN AND 

3674
02:20:52,688 --> 02:21:00,629
COMPUTER SCIENCE AT NYU.

3675
02:21:00,629 --> 02:21:03,232
MY SLOGAN IS FROM CODE TO CARE.

3676
02:21:03,232 --> 02:21:04,666
I WANT TO INTRODUCE WHAT WE DO, 

3677
02:21:04,666 --> 02:21:11,140
THE SHENHAV LAB, FOCUSED ON 

3678
02:21:11,140 --> 02:21:11,707
TECHNOLOGY DEVELOPMENT AND 

3679
02:21:11,707 --> 02:21:21,917
TRANSLATION.

3680
02:21:23,352 --> 02:21:25,821
WE KNOW THE BIOLOGICAL CLINICAL 

3681
02:21:25,821 --> 02:21:26,989
PHENOMENAS WE ARE INTERESTED IN 

3682
02:21:26,989 --> 02:21:33,362
ARE DYNAMIC, BUT THEY ARE ALSO 

3683
02:21:33,362 --> 02:21:35,030
OCCURRING IN DIFFERENT ORGAN 

3684
02:21:35,030 --> 02:21:35,497
SYSTEMS.

3685
02:21:35,497 --> 02:21:37,332
THEY WILL HAVE IMPRINTS ON 

3686
02:21:37,332 --> 02:21:42,738
DIFFERENT MODALITIES, 

3687
02:21:42,738 --> 02:21:44,840
MICROBIOMES AND RHETTAL IMAGING,

3688
02:21:44,840 --> 02:21:46,475
YOU WOULD BE SURPRISED.

3689
02:21:46,475 --> 02:21:48,510
WE ALSO VERY MUCH INTERESTED IN 

3690
02:21:48,510 --> 02:21:51,880
WORKING WITH CLINICAL DATA TO 

3691
02:21:51,880 --> 02:21:54,650
COMPLETE THIS PICTURE OF OMIX 

3692
02:21:54,650 --> 02:21:56,018
AND IMAGING.

3693
02:21:56,018 --> 02:21:59,321
THE BIG BULK OF OUR WORK IS 

3694
02:21:59,321 --> 02:22:03,759
HAPPENING HERE IN MODELLING 

3695
02:22:03,759 --> 02:22:04,493
STAGE.

3696
02:22:04,493 --> 02:22:07,262
MATHEMATICAL MODELS, AI MODELS 

3697
02:22:07,262 --> 02:22:09,231
AND PACKAGE THEM IN END TO END 

3698
02:22:09,231 --> 02:22:11,033
SOFTWARE THAT IS WHAT WE 

3699
02:22:11,033 --> 02:22:11,467
PUBLISH.

3700
02:22:11,467 --> 02:22:12,801
OUR METHODOLOGY OR CONTRIBUTION 

3701
02:22:12,801 --> 02:22:14,503
TO THE SCIENTIFIC COMMUNITY.

3702
02:22:14,503 --> 02:22:16,839
STATEMENT, WE ARE USING THESE 

3703
02:22:16,839 --> 02:22:18,373
MODELS TO DRIVE DISCOVERY.

3704
02:22:18,373 --> 02:22:21,210
WE ARE BASICALLY USING THEM FOR 

3705
02:22:21,210 --> 02:22:21,877
DATA ANALYSIS.

3706
02:22:21,877 --> 02:22:24,313
OFTENTIMES THE ORDER IS 

3707
02:22:24,313 --> 02:22:24,580
REVERASED.

3708
02:22:24,580 --> 02:22:26,882
WE HAVE A PRESSING QUESTION FROM

3709
02:22:26,882 --> 02:22:28,884
THE DATA OR HYPOTHESIS, THERE IS

3710
02:22:28,884 --> 02:22:31,286
NO GOOD OFF THE SHELF TOOL, WE 

3711
02:22:31,286 --> 02:22:33,088
DESIGN A MODEL AND WE PUBLISH IT

3712
02:22:33,088 --> 02:22:35,691
AS A ROBUST MODEL FOR THE ENTIRE

3713
02:22:35,691 --> 02:22:36,792
COMMUNITY TO USE BEYOND 

3714
02:22:36,792 --> 02:22:37,359
ANSWERING THAT PARTICULAR 

3715
02:22:37,359 --> 02:22:39,528
QUESTION OR ADDRESSING THAT 

3716
02:22:39,528 --> 02:22:39,928
HYPOTHESIS.

3717
02:22:39,928 --> 02:22:44,032
A SECOND PIECE IS TRANSLATION.

3718
02:22:44,032 --> 02:22:46,268
WHEN WE'RE DEVELOPING THESE 

3719
02:22:46,268 --> 02:22:48,237
MODELS WE HAVE SCALEABILITY, 

3720
02:22:48,237 --> 02:22:49,304
SUSTAINABILITY, CLINICAL 

3721
02:22:49,304 --> 02:22:50,839
IMPLEMENTATION IN MIND SO THIS 

3722
02:22:50,839 --> 02:22:53,075
IS HOW WE ARE THINKING ABOUT IT 

3723
02:22:53,075 --> 02:22:58,180
FROM THE INITIATION OF OUR 

3724
02:22:58,180 --> 02:22:59,281
RESEARCH PROJECT AS WELL AS THE 

3725
02:22:59,281 --> 02:23:00,649
MODELLING STEPS.

3726
02:23:00,649 --> 02:23:02,851
NOW WE ARE NOT DOING THAT.

3727
02:23:02,851 --> 02:23:04,386
THIS CAN LOOK VERY GENERAL.

3728
02:23:04,386 --> 02:23:05,954
THIS IS RELEVANT TO A LOT OF 

3729
02:23:05,954 --> 02:23:06,955
HUMAN CONDITIONS.

3730
02:23:06,955 --> 02:23:09,057
WHAT WE ARE FOCUSED ON IS WOMEN 

3731
02:23:09,057 --> 02:23:10,692
AND CHILDREN'S HEALTH FROM 

3732
02:23:10,692 --> 02:23:12,294
FERTILITY TO EARLY LIFE SO WE 

3733
02:23:12,294 --> 02:23:15,464
HAVE PROJECTS AROUND FERTILITY, 

3734
02:23:15,464 --> 02:23:18,500
PREGNANCY, WHERE WE MOSTLY FOCUS

3735
02:23:18,500 --> 02:23:21,136
ON DIAGNOSING PREGNANCY 

3736
02:23:21,136 --> 02:23:23,105
DISORDERS FROM FIRST TRIMESTER 

3737
02:23:23,105 --> 02:23:23,405
INFORMATION.

3738
02:23:23,405 --> 02:23:25,474
TODAY I WANT TO FOCUS ON 

3739
02:23:25,474 --> 02:23:27,843
LACTATION AND EARLY LIFE, THAT 

3740
02:23:27,843 --> 02:23:28,677
SYNERGY BETWEEN MOTHER AND 

3741
02:23:28,677 --> 02:23:28,977
CHILD.

3742
02:23:28,977 --> 02:23:33,115
I WANT TO FOCUS ON HUMAN MILK 

3743
02:23:33,115 --> 02:23:35,284
COMPOSITION, INFANT HEALTH AND 

3744
02:23:35,284 --> 02:23:38,086
INFANT MICROBIOME DEVELOPMENT.

3745
02:23:38,086 --> 02:23:40,122
I DON'T KNOW IF IT NEEDS AN 

3746
02:23:40,122 --> 02:23:42,824
INTRODUCTION AT THIS POINT, THE 

3747
02:23:42,824 --> 02:23:44,026
MICROORGANISMS THAT LIVE IN AND 

3748
02:23:44,026 --> 02:23:45,093
ON OUR BODY.

3749
02:23:45,093 --> 02:23:47,729
AS WE SPEAK AND THEY INOCULATE 

3750
02:23:47,729 --> 02:23:50,732
OUR BODIES EARLY IN LIFE.

3751
02:23:50,732 --> 02:23:53,001
SO STARTING BIRTH AND IN TERMS 

3752
02:23:53,001 --> 02:23:58,307
OF THE NUMBERS YOU SEE HERE, 

3753
02:23:58,307 --> 02:24:00,409
MICROBES OUTNUMBER THE HUMAN 

3754
02:24:00,409 --> 02:24:02,678
CELLS, IT IS A DEBATE OF 1RKS X 

3755
02:24:02,678 --> 02:24:04,379
OR 10X.

3756
02:24:04,379 --> 02:24:06,782
30 MILLION MICROBES ARE IN OUR 

3757
02:24:06,782 --> 02:24:08,750
BODY AS WE SPEAK.

3758
02:24:08,750 --> 02:24:15,757
THE COOL THING ABOUT THE HUMAN 

3759
02:24:15,757 --> 02:24:18,193
MICROBIOME CHANGES AND CAN 

3760
02:24:18,193 --> 02:24:20,596
INDICATE OR CAUSE DISEASE.

3761
02:24:20,596 --> 02:24:23,732
BUT AT THE SAME TIME, IT IS 

3762
02:24:23,732 --> 02:24:29,104
MODIFIABLE AND A MODALITY TO USE

3763
02:24:29,104 --> 02:24:31,106
TO INTERVENE IN A PRETTY 

3764
02:24:31,106 --> 02:24:31,873
STRAIGHT FORWARD WAY.

3765
02:24:31,873 --> 02:24:34,476
WE HAVE PUBLISHED QUITE 

3766
02:24:34,476 --> 02:24:37,079
EXTENSIVE WORK ON THE HUMAN 

3767
02:24:37,079 --> 02:24:39,214
MICROBIOME ON THE FOCUS ON WOMEN

3768
02:24:39,214 --> 02:24:40,282
AND CHILDREN'S HEALTH.

3769
02:24:40,282 --> 02:24:43,185
I WANT TO FOCUS ON A PAPER WE 

3770
02:24:43,185 --> 02:24:46,688
PUBLISHED IN CELL, LATER IN 

3771
02:24:46,688 --> 02:24:48,724
2024, WHERE WE TIMED TOGETHER 

3772
02:24:48,724 --> 02:24:51,827
THE HUMAN MICROBIOME AND HUMAN 

3773
02:24:51,827 --> 02:24:52,461
MILLION K.

3774
02:24:52,461 --> 02:24:55,597
WHY ARE WE TYING THEM TOGETHER?

3775
02:24:55,597 --> 02:24:58,000
THIS IN 2018 THERE WAS A PAPER 

3776
02:24:58,000 --> 02:25:01,169
IN "NATURE" FROM THE TEDDY STUDY

3777
02:25:01,169 --> 02:25:03,272
THAT GAVE THE BEST ANALOGY OF 

3778
02:25:03,272 --> 02:25:05,907
WHAT THE EARLY LIFE MICROBIOME 

3779
02:25:05,907 --> 02:25:06,074
IS.

3780
02:25:06,074 --> 02:25:08,377
IT IS A SECURITY BLANKET.

3781
02:25:08,377 --> 02:25:12,281
IN 2024, WE KIND OF EXTENDED OR 

3782
02:25:12,281 --> 02:25:13,915
EXTENDED UPON THAT VIEW OF THE 

3783
02:25:13,915 --> 02:25:16,752
HUMAN MICROBIOME AS A SECURITY 

3784
02:25:16,752 --> 02:25:19,621
BLANKET AND TYING HUMAN MILK 

3785
02:25:19,621 --> 02:25:20,422
INTO THAT.

3786
02:25:20,422 --> 02:25:22,424
WHAT YOU SEE ON THE RIGHT IS BY 

3787
02:25:22,424 --> 02:25:24,660
FAR BREAST MILK IS THE MOST 

3788
02:25:24,660 --> 02:25:26,561
IMPORTANT DETERMINANT OF THE 

3789
02:25:26,561 --> 02:25:29,231
HUMAN MICROBIOME.

3790
02:25:29,231 --> 02:25:31,233
LET'S DIVE INTO BREAST FEEDING 

3791
02:25:31,233 --> 02:25:34,303
AN HUMAN MILK FOR A MINUTE.

3792
02:25:34,303 --> 02:25:37,572
HUMAN MILK WAS DEFINED OR 

3793
02:25:37,572 --> 02:25:39,941
DESCRIBED AS A SUPERFOOD, BABY'S

3794
02:25:39,941 --> 02:25:41,943
FIRST VACCINE, PERSONALIZED 

3795
02:25:41,943 --> 02:25:43,979
MEDICINE, TAILOR MADE FOR TINY 

3796
02:25:43,979 --> 02:25:45,047
HUMANS.

3797
02:25:45,047 --> 02:25:47,049
SCIENTIFICALLY WE DON'T KNOW 

3798
02:25:47,049 --> 02:25:48,817
ENOUGH ABOUT HUMAN MILK SO WE 

3799
02:25:48,817 --> 02:25:51,286
ARE USING THESE CUTE PHRASES TO 

3800
02:25:51,286 --> 02:25:51,720
DESCRIBE IT.

3801
02:25:51,720 --> 02:25:54,156
WHAT WE DO KNOW IS IT IS VERY 

3802
02:25:54,156 --> 02:25:55,891
DIFFERENT IN COMPOSITION FROM 

3803
02:25:55,891 --> 02:25:56,124
FORMULA.

3804
02:25:56,124 --> 02:25:58,694
WE KNOW THE STATISTICS OR THE 

3805
02:25:58,694 --> 02:26:00,028
EPIDEMIOLOGY THAT IN SOME 

3806
02:26:00,028 --> 02:26:02,130
COUNTRIES UP TO 20% OF CHILD 

3807
02:26:02,130 --> 02:26:05,267
MORTALITY IS CAUSE BY SUBOPTIMAL

3808
02:26:05,267 --> 02:26:06,702
BREAST FEEDING.

3809
02:26:06,702 --> 02:26:08,837
THAT WAS TRUE IN 2013.

3810
02:26:08,837 --> 02:26:13,108
IN OTHER SETTINGS BETWEEN 15 TO 

3811
02:26:13,108 --> 02:26:15,444
72% REDUCTION IS AT LEAST 

3812
02:26:15,444 --> 02:26:18,347
REPORTED IN A REALLY WIDE 

3813
02:26:18,347 --> 02:26:20,916
VARIETY OF DISEASES FROM TYPE 1 

3814
02:26:20,916 --> 02:26:25,854
DIABETES TO OBESITY AND 

3815
02:26:25,854 --> 02:26:26,555
RESPIRATORY TRACT INFECTION THAT

3816
02:26:26,555 --> 02:26:30,225
IS RELATED TO BREAST FEEDING AND

3817
02:26:30,225 --> 02:26:31,426
HUMAN MILK.

3818
02:26:31,426 --> 02:26:34,229
THE KIND OF GAP WE HAVE ARE WHAT

3819
02:26:34,229 --> 02:26:36,798
ARE THE UNDERLYING BIOLOGY, THE 

3820
02:26:36,798 --> 02:26:38,133
PROTECTED MECHANISMS THAT ALLOW 

3821
02:26:38,133 --> 02:26:39,701
FOR THESE DRAMATIC REDUCTIONS 

3822
02:26:39,701 --> 02:26:40,435
AND PROTECTION?

3823
02:26:40,435 --> 02:26:43,705
THAT IS WHAT WE ARE INTERESTED 

3824
02:26:43,705 --> 02:26:44,139
IN.

3825
02:26:44,139 --> 02:26:45,273
AS A COMPUTER SCIENTIST AND 

3826
02:26:45,273 --> 02:26:47,342
SOMEONE WHO IS OBSESSED WITH 

3827
02:26:47,342 --> 02:26:49,311
TIME SERIES AND DYNAMICS, THAT 

3828
02:26:49,311 --> 02:26:51,413
IS HOW I VIEW LACTATION.

3829
02:26:51,413 --> 02:26:54,049
IN MY MIND IT IS A DYNAMIC 

3830
02:26:54,049 --> 02:26:54,282
PROCESS.

3831
02:26:54,282 --> 02:26:56,852
NOT JUST IN MY MIND, IN NATURE'S

3832
02:26:56,852 --> 02:26:57,052
MIND.

3833
02:26:57,052 --> 02:27:00,355
IT STARTS IN EARLY DAYS IN THE 

3834
02:27:00,355 --> 02:27:04,192
CLOS ROM, TRANSITIONS IN 

3835
02:27:04,192 --> 02:27:05,794
TRANSITIONAL MILK AND MATURES 

3836
02:27:05,794 --> 02:27:07,329
THROUGH THE LACTATION PERIOD.

3837
02:27:07,329 --> 02:27:11,967
THERE ARE NUANCED CHANGES 

3838
02:27:11,967 --> 02:27:13,635
HAPPENING IN TEMPORALLY 

3839
02:27:13,635 --> 02:27:15,637
STRUCTURED BLOCKS.

3840
02:27:15,637 --> 02:27:17,706
MILK IS NOT A STAND ALONE 

3841
02:27:17,706 --> 02:27:17,939
LIQUID.

3842
02:27:17,939 --> 02:27:19,574
IT IS A TRIAD.

3843
02:27:19,574 --> 02:27:21,943
THAT IS COMPOSED OF THE INFANT, 

3844
02:27:21,943 --> 02:27:25,847
THE MOTHER, AND THE MILK.

3845
02:27:25,847 --> 02:27:27,682
MATERNAL PHYSIOLOGY CHANGES POST

3846
02:27:27,682 --> 02:27:29,684
PARTUM AND DURING LACTATION 

3847
02:27:29,684 --> 02:27:30,018
PERIOD.

3848
02:27:30,018 --> 02:27:34,122
THE INFANT NEEDS CHANGES AND AS 

3849
02:27:34,122 --> 02:27:35,524
A RESPONSE HUMAN MILK CHANGES.

3850
02:27:35,524 --> 02:27:38,527
SO I WILL GIVE YOU A CARTOON 

3851
02:27:38,527 --> 02:27:40,662
EXAMPLE THAT HUMAN MILK 

3852
02:27:40,662 --> 02:27:41,430
ANTIBODIES CHANGES OVER THE 

3853
02:27:41,430 --> 02:27:43,098
COURSE OF LACTATION.

3854
02:27:43,098 --> 02:27:50,105
THE COMPLEX SUGARS, THE COMPLEX 

3855
02:27:50,105 --> 02:27:52,574
GLYCENS ARE CHANGING IN 

3856
02:27:52,574 --> 02:27:54,209
COMPOSITION AND ABUNDANCE OVER 

3857
02:27:54,209 --> 02:27:54,576
TIME.

3858
02:27:54,576 --> 02:28:00,048
EVEN THE MILK MICROBES ARE 

3859
02:28:00,048 --> 02:28:01,349
CHANGING OVER TIME.

3860
02:28:01,349 --> 02:28:02,784
THIS IS A VERY SMALL EXAMPLE OF 

3861
02:28:02,784 --> 02:28:05,821
THE COMPONENTS, ARE INTERACTING 

3862
02:28:05,821 --> 02:28:08,723
WITH ALL OF THE INFANT CELLS AND

3863
02:28:08,723 --> 02:28:10,158
SYSTEMS AND ORGANS.

3864
02:28:10,158 --> 02:28:11,726
WHAT WE ARE REALLY INTERESTED IN

3865
02:28:11,726 --> 02:28:13,728
THIS CONTEXT IS THE INTERACTION 

3866
02:28:13,728 --> 02:28:19,167
WITH THE INFANT MICROBIOME, GUT 

3867
02:28:19,167 --> 02:28:22,471
MICROBIOME NASAL AND AIRWAY 

3868
02:28:22,471 --> 02:28:24,072
MICROBIOME AND COMBINATION OR 

3869
02:28:24,072 --> 02:28:26,041
INTERACTION BETWEEN TWO DYNAMIC 

3870
02:28:26,041 --> 02:28:27,542
AND COMPLEX SYSTEMS AT THE END 

3871
02:28:27,542 --> 02:28:31,279
OF THE DAY LEADING TO SMALL SET 

3872
02:28:31,279 --> 02:28:33,482
OF PHENOTYPES AND ASTHMA, YES OR

3873
02:28:33,482 --> 02:28:36,284
NO AT AGE 3 OR AGE 5?

3874
02:28:36,284 --> 02:28:38,753
OBVIOUSLY IT IS MUCH MORE 

3875
02:28:38,753 --> 02:28:40,522
COMPLICATED THAN THAT.

3876
02:28:40,522 --> 02:28:42,290
THE PHENOTYPE OR CLINICAL 

3877
02:28:42,290 --> 02:28:43,124
REPRESENTATION IS MORE SIMPLE 

3878
02:28:43,124 --> 02:28:44,860
THAN THE PROCESS THAT WAS 

3879
02:28:44,860 --> 02:28:45,994
LEADING TO IT.

3880
02:28:45,994 --> 02:28:47,295
SO IN ORDER TO START THINKING 

3881
02:28:47,295 --> 02:28:53,735
ABOUT THIS, WE NEED VERY RICH 

3882
02:28:53,735 --> 02:28:54,469
TYPE OF DATA.

3883
02:28:54,469 --> 02:28:56,538
SO WE HAVE PARTNERED WITH THE 

3884
02:28:56,538 --> 02:29:00,842
CHILD COHORT STUDY.

3885
02:29:00,842 --> 02:29:07,115
MY PARTNERS HAVE GENERATED THIS 

3886
02:29:07,115 --> 02:29:08,283
AMAZING RESOURCES OF COHORT 

3887
02:29:08,283 --> 02:29:08,483
STUDY.

3888
02:29:08,483 --> 02:29:11,520
THEY COLLECTED DATA FROM 3,500 

3889
02:29:11,520 --> 02:29:14,055
FAMILIES FROM MID PREGNANCY INTO

3890
02:29:14,055 --> 02:29:16,024
EARLY ADOLESCENTS THEY ARE STILL

3891
02:29:16,024 --> 02:29:18,226
COLLECTING DATA AND HAVE 

3892
02:29:18,226 --> 02:29:20,262
BIOLOGICAL SAMPLES AT BIRTH, 3 

3893
02:29:20,262 --> 02:29:21,696
MONTHS, 12 MONTHS.

3894
02:29:21,696 --> 02:29:24,432
THEY HAVE COLLECTED AT 5 AND 8 

3895
02:29:24,432 --> 02:29:27,335
YEARS, THEY HAVE COLLECTED NASAL

3896
02:29:27,335 --> 02:29:30,872
SWABS AND POOP SAMPLES SEQUENCED

3897
02:29:30,872 --> 02:29:34,376
TO LOOK AT MICROBIOME 

3898
02:29:34,376 --> 02:29:36,244
COMPETITION AND HUMAN MILK 

3899
02:29:36,244 --> 02:29:37,812
COMPOSITION AT 3 MONTHS OF AGE.

3900
02:29:37,812 --> 02:29:39,881
IN ADDITION TO THESE AMAZING 

3901
02:29:39,881 --> 02:29:42,017
BIOLOGICAL SAMPLES WE HAVE 

3902
02:29:42,017 --> 02:29:43,552
EXTENSIVE INFORMATION ABOUT 

3903
02:29:43,552 --> 02:29:47,556
PRENATAL EXPOSURE AND POST NATAL

3904
02:29:47,556 --> 02:29:48,089
EXPOS

3905
02:29:48,089 --> 02:29:49,858
EXPOSURE, HOME ENVIRONMENT, 

3906
02:29:49,858 --> 02:29:51,459
NUTRITION, VIRAL INFECTION, 

3907
02:29:51,459 --> 02:29:53,261
MATERNAL STRESS, NUTRITION, ET 

3908
02:29:53,261 --> 02:29:55,897
CETERA, AND ALL THE CLINICAL 

3909
02:29:55,897 --> 02:29:58,099
OUTCOMES OF THESE CHILDREN UNTIL

3910
02:29:58,099 --> 02:30:02,037
AGE 8 AND BEYOND.

3911
02:30:02,037 --> 02:30:05,040
SO WHAT I BASICALLY SAID BEFORE 

3912
02:30:05,040 --> 02:30:06,575
IS WE KNOW THAT BREAST FEEDING 

3913
02:30:06,575 --> 02:30:08,777
IS REDUCING THE RATES OF 

3914
02:30:08,777 --> 02:30:12,948
INFECTIONS, ALLERGIES ASTHMAs 

3915
02:30:12,948 --> 02:30:14,015
AND MUCH MORE.

3916
02:30:14,015 --> 02:30:14,749
THE MECHANISMS ARE NOT KNOWN.

3917
02:30:14,749 --> 02:30:17,319
ONE OF THE QUESTIONS WE CAN ASK 

3918
02:30:17,319 --> 02:30:21,056
WITH THE CHILD COHORT STUDY ARE 

3919
02:30:21,056 --> 02:30:23,491
THE GUT NASAL MICROBES INVOLVED 

3920
02:30:23,491 --> 02:30:24,392
IN THIS PROTECTION?

3921
02:30:24,392 --> 02:30:28,964
ARE THEY PART OF THE UNDERLYING 

3922
02:30:28,964 --> 02:30:29,598
MECHANISM?

3923
02:30:29,598 --> 02:30:33,768
WE HAD THIS THEE AXES 

3924
02:30:33,768 --> 02:30:34,402
HYPOTHESIS.

3925
02:30:34,402 --> 02:30:38,073
WE KNOW THE MICROBIRKS IOME IS 

3926
02:30:38,073 --> 02:30:39,908
ASSOCIATED WITH RESPIRATORY 

3927
02:30:39,908 --> 02:30:41,710
HEALTH AND BREAST FEED IS 

3928
02:30:41,710 --> 02:30:43,712
ASSOCIATED WITH RESPIRATORY 

3929
02:30:43,712 --> 02:30:45,780
HEALTH AND CAN WE START 

3930
02:30:45,780 --> 02:30:48,550
INFERRING A THREE-WAY ACCESS OR 

3931
02:30:48,550 --> 02:30:50,352
SOMETHING POTENTIALLY MORE 

3932
02:30:50,352 --> 02:30:50,585
CAUSAL?

3933
02:30:50,585 --> 02:30:52,420
WHAT WE HAVE DONE IS THE 

3934
02:30:52,420 --> 02:30:52,687
FOLLOWING.

3935
02:30:52,687 --> 02:30:55,290
WE STARTED THINKING IN A 

3936
02:30:55,290 --> 02:30:59,127
SLIGHTLY DIFFERENT WAY ABOUT THE

3937
02:30:59,127 --> 02:31:00,762
MICROBIOME BRINGING IT BACK TO 

3938
02:31:00,762 --> 02:31:02,797
LACTATION AS A PROCESS, THE 

3939
02:31:02,797 --> 02:31:06,468
HUMAN MICROBIOME IS A DYNAMIC 

3940
02:31:06,468 --> 02:31:06,701
PROCESS.

3941
02:31:06,701 --> 02:31:09,638
HERE YOU SEE TWO 

3942
02:31:09,638 --> 02:31:10,605
ILLUSTRATIONINGS OF A POTENTIAL 

3943
02:31:10,605 --> 02:31:14,075
BENEFICIAL ENVIRONMENT OF THE 

3944
02:31:14,075 --> 02:31:16,945
NASAL MICROBIOME COMMUNITY AND 

3945
02:31:16,945 --> 02:31:18,813
AT THE BOTTOM YOU SEE A 

3946
02:31:18,813 --> 02:31:19,314
COMPROMISED DEVELOPMENT.

3947
02:31:19,314 --> 02:31:21,049
WHAT I REALLY WANT YOU TO GET 

3948
02:31:21,049 --> 02:31:23,518
OUT OF THIS IS NOT WHICH 

3949
02:31:23,518 --> 02:31:26,454
BACTERIA IS THERE, WHICH MICROBE

3950
02:31:26,454 --> 02:31:27,322
IS THERE.

3951
02:31:27,322 --> 02:31:30,659
THE NAMES THE LEGEND DON'T 

3952
02:31:30,659 --> 02:31:30,892
MATTER.

3953
02:31:30,892 --> 02:31:33,294
WHAT MATTERS IS THE TIMING.

3954
02:31:33,294 --> 02:31:35,163
THE BLUE GUY IN BENEFICIAL 

3955
02:31:35,163 --> 02:31:37,399
DEVELOPMENT IS BEEN INTRODUCED 

3956
02:31:37,399 --> 02:31:38,867
AROUND 5 MONTHS OF AGE.

3957
02:31:38,867 --> 02:31:40,068
HERE IT IS INTRODUCED IN THE 

3958
02:31:40,068 --> 02:31:41,836
FIRST TWO WEEKS.

3959
02:31:41,836 --> 02:31:43,038
THAT'S AN IMPORTANT INFORMATION.

3960
02:31:43,038 --> 02:31:45,707
SO WHAT WE ARE CLAIMING HERE AND

3961
02:31:45,707 --> 02:31:48,009
HERE NOW IS JUST AN OBSERVATION 

3962
02:31:48,009 --> 02:31:51,079
ABOUT THE MICROBIOME, THAT IT IS

3963
02:31:51,079 --> 02:31:54,649
ABOUT TIMING, THE SAKE MICROBE, 

3964
02:31:54,649 --> 02:31:56,985
MAY BE BENEFICIAL ONE YEAR BUT 

3965
02:31:56,985 --> 02:32:00,021
NOT INTRODUCED EARLIER IN LIFE.

3966
02:32:00,021 --> 02:32:01,923
AND THEN KIND OF STARTING TO 

3967
02:32:01,923 --> 02:32:04,726
THINK TOWARDS MECHANISM, WHAT IS

3968
02:32:04,726 --> 02:32:07,128
THE ROLE OF HUMAN MILK IN 

3969
02:32:07,128 --> 02:32:08,530
ORCHESTRATING THIS ORDER?

3970
02:32:08,530 --> 02:32:13,201
IS IT ANY WAY A PACEMAKER OF 

3971
02:32:13,201 --> 02:32:15,236
THESE MICROBIAL DYNAMICS?

3972
02:32:15,236 --> 02:32:17,472
SO WHAT WE'VE DONE IS WE 

3973
02:32:17,472 --> 02:32:19,074
STARTED -- WE HAVE RICH ENOUGH 

3974
02:32:19,074 --> 02:32:21,176
DATA IN BOTH THE NASAL AND THE 

3975
02:32:21,176 --> 02:32:26,147
GUT SO WE CAN CHARACTERIZE IT 

3976
02:32:26,147 --> 02:32:30,318
BASED ON COLONIZATION PATTERNS.

3977
02:32:30,318 --> 02:32:33,221
WHICH MICROBES COLONIZE EARLY.

3978
02:32:33,221 --> 02:32:34,622
THAT IS WHAT YOU SEE IN PINK.

3979
02:32:34,622 --> 02:32:37,492
THEY ARE PRESENT IN THE 3 MONTH 

3980
02:32:37,492 --> 02:32:39,894
SAMPLE: THEY ARE PRESENT AT THE 

3981
02:32:39,894 --> 02:32:43,264
3 MONTHS, ONE YEAR SAMPLE AND 

3982
02:32:43,264 --> 02:32:46,401
WHICH MICROBES ARE LATE 

3983
02:32:46,401 --> 02:32:46,968
COLONIZERS.

3984
02:32:46,968 --> 02:32:48,369
THEY ARRIVE LATER.

3985
02:32:48,369 --> 02:32:49,537
THE INTERESTING FIT AND I'M 

3986
02:32:49,537 --> 02:32:50,872
SKIPPING A FEW STEPS BETWEEN 

3987
02:32:50,872 --> 02:32:53,174
THIS SLIDE AND THE NEXT, IS THAT

3988
02:32:53,174 --> 02:32:55,276
THESE COLONIZATION PATTERNS AND 

3989
02:32:55,276 --> 02:33:00,281
THE ORDER AND TIMING OF MICROBES

3990
02:33:00,281 --> 02:33:04,452
WAS CRUCIAL TO UNDERSTAND THE 

3991
02:33:04,452 --> 02:33:07,689
ETIOLOGY OR CONTRIBUTION OF THE 

3992
02:33:07,689 --> 02:33:09,624
MICROBIOME HUMAN MILK TO 

3993
02:33:09,624 --> 02:33:10,492
PRESCHOOL ASTHMA.

3994
02:33:10,492 --> 02:33:13,161
WHAT WE FOUND THAT THESE 

3995
02:33:13,161 --> 02:33:15,263
MICROBIOME TRA GENETICRIES, THE 

3996
02:33:15,263 --> 02:33:20,502
COLONIZATION PATTERNS AS WELL AS

3997
02:33:20,502 --> 02:33:23,872
HUMAN MILK COMPONENTS CAN 

3998
02:33:23,872 --> 02:33:25,673
PREDICT PRESCHOOL ASTHMA.

3999
02:33:25,673 --> 02:33:28,443
WE HAVE APPLIED MACHINE LEARNING

4000
02:33:28,443 --> 02:33:31,813
AND BENCHMARKED AND LOOKED 

4001
02:33:31,813 --> 02:33:37,318
RESOLUTIONS OF OUR DATA.

4002
02:33:37,318 --> 02:33:37,852
WE LOOKED AT ONE SNAPSHOT.

4003
02:33:37,852 --> 02:33:38,586
CAN WE USE THE 3 MONTHS DATA?

4004
02:33:38,586 --> 02:33:42,357
THE ONE YEAR DATA?

4005
02:33:42,357 --> 02:33:42,957
H THE ANSWER, IT IS NOT VERY 

4006
02:33:42,957 --> 02:33:43,258
INFORMATIVE.

4007
02:33:43,258 --> 02:33:43,758
WHEN WE LOOK AT THE TRA 

4008
02:33:43,758 --> 02:33:44,259
SECRETORIES, HOW THESE 

4009
02:33:44,259 --> 02:33:45,026
COMMUNITIES CHANGE OVER TIME IN 

4010
02:33:45,026 --> 02:33:46,828
BOTH THE NASAL AND THE GUT WE 

4011
02:33:46,828 --> 02:33:48,530
WERE ABLE TO GET TO RELATIVELY 

4012
02:33:48,530 --> 02:33:49,697
HIGH ACCURACY.

4013
02:33:49,697 --> 02:33:54,502
WHEN THE ADDED MILK COMPONENTS 

4014
02:33:54,502 --> 02:33:55,136
ON TOP OF THESE TRAJECTORIES WE 

4015
02:33:55,136 --> 02:33:57,872
GOT TO REALLY IMPRESSIVE 

4016
02:33:57,872 --> 02:33:58,139
ACCURACY.

4017
02:33:58,139 --> 02:33:59,874
WHEN WE INTERROGATED THE 

4018
02:33:59,874 --> 02:34:03,278
COMPONENTS OF THIS MODEL AND THE

4019
02:34:03,278 --> 02:34:04,312
CONTRIBUTION OF THESE COMPONENTS

4020
02:34:04,312 --> 02:34:06,314
TO THE MODEL ACCURACY, WHAT 

4021
02:34:06,314 --> 02:34:08,183
WE'VE SEEN WAS VERY INTERESTING.

4022
02:34:08,183 --> 02:34:12,987
I'M NOT EXPECTING YOU TO DIGEST 

4023
02:34:12,987 --> 02:34:14,055
ALL THIS INFORMATION IN THE 

4024
02:34:14,055 --> 02:34:15,890
SLIDE, BUT I WANT TO HIGHLIGHT A

4025
02:34:15,890 --> 02:34:16,591
FEW THINGS.

4026
02:34:16,591 --> 02:34:21,963
MILK COMPONENTS WERE THE TOP 

4027
02:34:21,963 --> 02:34:27,235
CONTRIBUTING AMONG FOR THESE 

4028
02:34:27,235 --> 02:34:27,769
MODELS AND SPECIFIC MILK 

4029
02:34:27,769 --> 02:34:28,536
COMPONENTS WERE CONTRIBUTING TO 

4030
02:34:28,536 --> 02:34:31,506
THE ACCURACY OF THESE MODELS AS 

4031
02:34:31,506 --> 02:34:33,708
WELL AS A SPECIFIC MIKE ROBES IN

4032
02:34:33,708 --> 02:34:35,310
BOTH THE GUT AND THE NASAL 

4033
02:34:35,310 --> 02:34:38,279
COMMUNITIES THAT WERE LATER 

4034
02:34:38,279 --> 02:34:40,315
COLONIZERS IN INFANTS THAT WERE 

4035
02:34:40,315 --> 02:34:41,282
BREAST FED.

4036
02:34:41,282 --> 02:34:43,251
SO WHAT WE REALLY CAPTURE HERE 

4037
02:34:43,251 --> 02:34:45,587
ARE THE TEMPORAL PATTERNS OF 

4038
02:34:45,587 --> 02:34:47,322
THESE MICROBES THAT WERE 

4039
02:34:47,322 --> 02:34:49,824
REFLECTED IN OTHER ANALYSES WE 

4040
02:34:49,824 --> 02:34:50,892
HAVE DONE.

4041
02:34:50,892 --> 02:34:52,327
SO WE GOT THIS REINFORCEMENT 

4042
02:34:52,327 --> 02:34:54,896
THEY ARE ACTUALLY PREDICTIVE.

4043
02:34:54,896 --> 02:34:56,631
AGAIN, A LOT OF INFORMATION IN 

4044
02:34:56,631 --> 02:35:00,368
THIS SLIDE, BUT WHAT WE'VE TRIED

4045
02:35:00,368 --> 02:35:02,337
TO WALK IN THE PATH OF 

4046
02:35:02,337 --> 02:35:02,871
ASSOCIATION.

4047
02:35:02,871 --> 02:35:13,414
WE ARE DATA SCIENTISTS BUT CAN 

4048
02:35:16,150 --> 02:35:22,357
WE GO TO CAUSALITY.

4049
02:35:22,357 --> 02:35:25,426
WE ARE TRYING TO LOOK AT THE 

4050
02:35:25,426 --> 02:35:27,662
DIRECT EFFECT OF BREAST FEEDING 

4051
02:35:27,662 --> 02:35:32,066
AT 3 MONTHS ON ASTHMA AT THREE 

4052
02:35:32,066 --> 02:35:35,203
YEARS ACCOUNTING FOR 

4053
02:35:35,203 --> 02:35:35,570
CO-VARIATES.

4054
02:35:35,570 --> 02:35:37,605
WHEN YOU REMOVE THE INDIRECT 

4055
02:35:37,605 --> 02:35:39,574
EFFECTS ON THE SLIDE, IT IS 

4056
02:35:39,574 --> 02:35:39,874
SIGNIFICANT.

4057
02:35:39,874 --> 02:35:42,610
WHEN YOU ARE ADDING THE INDIRECT

4058
02:35:42,610 --> 02:35:45,046
EFFECT AND SPECIFICALLY THE 

4059
02:35:45,046 --> 02:35:48,283
TRAJECTORY OF THE NASAL AND GUT 

4060
02:35:48,283 --> 02:35:50,051
MICROBIOME, THIS DIRECT EFFECT 

4061
02:35:50,051 --> 02:35:51,719
IS NO LONGER SIGNIFICANT AND 

4062
02:35:51,719 --> 02:35:54,355
INDIRECT EFFECTS ARE ACTUALLY 

4063
02:35:54,355 --> 02:35:54,656
SIGNIFICANT.

4064
02:35:54,656 --> 02:35:57,992
FROM THAT, WE WERE ABLE TO 

4065
02:35:57,992 --> 02:36:01,396
EXTRAPOLATE AND SAY HUMAN MILK 

4066
02:36:01,396 --> 02:36:03,631
ACTS AS A PACEMAKER.

4067
02:36:03,631 --> 02:36:08,469
IT REL LATERS THE MICROBIAL 

4068
02:36:08,469 --> 02:36:10,138
COLONIZATION POTENTIALLY AN 

4069
02:36:10,138 --> 02:36:12,373
IMPORTANT MECHANISM RELEVANT FOR

4070
02:36:12,373 --> 02:36:14,442
THE PROTECTION FROM ASTHMA AT 

4071
02:36:14,442 --> 02:36:15,276
THREE YEARS.

4072
02:36:15,276 --> 02:36:18,046
IF I NEED TO SUMMARIZE WHAT I 

4073
02:36:18,046 --> 02:36:20,615
HAVE SHOWN YOU THUS FAR IS THAT 

4074
02:36:20,615 --> 02:36:25,520
WE HAD DATA ON THE NASAL AND GUT

4075
02:36:25,520 --> 02:36:26,821
MICROBIOMES FOR OVER 2,000 

4076
02:36:26,821 --> 02:36:29,324
INFANTS IN THE FIRST YEAR OF 

4077
02:36:29,324 --> 02:36:33,494
LIFE SWELL FINE GRAIN OF 

4078
02:36:33,494 --> 02:36:34,395
MOLECULAR CHARACTERIZATION OF 

4079
02:36:34,395 --> 02:36:36,164
THEIR MOTHER'S MILK.

4080
02:36:36,164 --> 02:36:39,801
AND WHAT WE KNOW FROM AGAIN EP 

4081
02:36:39,801 --> 02:36:41,569
DEEMOLOGY EXCLUSIVE HUMAN MILK 

4082
02:36:41,569 --> 02:36:44,072
IS LOWERING THE RISK OF 

4083
02:36:44,072 --> 02:36:47,642
PRESCHOOL ASTHMA, ASTHMA AT 3 

4084
02:36:47,642 --> 02:36:48,843
YEARS.

4085
02:36:48,843 --> 02:36:49,777
EARLY WEANING AND INTRODUCTION 

4086
02:36:49,777 --> 02:36:52,613
TO FORMULA IS INCREASING THAT 

4087
02:36:52,613 --> 02:36:54,349
RISK BUT WE DON'T KNOW WHY.

4088
02:36:54,349 --> 02:36:56,517
WHAT WE HAVE SHOWN HERE IS 

4089
02:36:56,517 --> 02:36:58,653
BREAST FEEDING INFANTS FOR 

4090
02:36:58,653 --> 02:37:02,156
LONGER THAN THREE MONTHS OF AGE 

4091
02:37:02,156 --> 02:37:07,962
IS AIDING IN GRADUAL 

4092
02:37:07,962 --> 02:37:08,262
MICROBIOMES.

4093
02:37:08,262 --> 02:37:10,231
THAT ROLE OF PACEMAKER HUMAN 

4094
02:37:10,231 --> 02:37:12,200
MILK IS ORCHESTRATING WHERE 

4095
02:37:12,200 --> 02:37:16,537
EARLY WEANING ACCELERATE A 

4096
02:37:16,537 --> 02:37:18,639
PREMATURE GAIN OF SPECIES AND 

4097
02:37:18,639 --> 02:37:19,507
FUNCTIONS ASSOCIATED WITH HIGHER

4098
02:37:19,507 --> 02:37:22,443
RISK OF PRESCHOOL ASTHMA.

4099
02:37:22,443 --> 02:37:24,445
SO IN. 

4100
02:37:24,445 --> 02:37:25,913
>> THANK YOU, DR. SHENHAV.

4101
02:37:25,913 --> 02:37:27,715
IF YOU CAN WRAP UP, PLEASE.

4102
02:37:27,715 --> 02:37:28,950
>> YES, YES.

4103
02:37:28,950 --> 02:37:30,385
I JUST WANT TO SAY HERE WE SHOW 

4104
02:37:30,385 --> 02:37:33,421
THE TIMING IS EVERYTHING.

4105
02:37:33,421 --> 02:37:34,655
BUT ONE MORE SENTENCE ABOUT 

4106
02:37:34,655 --> 02:37:36,657
HUMAN MILK.

4107
02:37:36,657 --> 02:37:39,660
THE ECONOMISTS JUST CALLED HUMAN

4108
02:37:39,660 --> 02:37:42,330
MILK A COUPLE OF MONTHS AGO 

4109
02:37:42,330 --> 02:37:46,501
LIQUID GOLD, BUT ACKNOWLEDGED WE

4110
02:37:46,501 --> 02:37:49,303
KNOW MORE ABOUT WHAT IS IN A 

4111
02:37:49,303 --> 02:37:52,040
TOMATO OR WINE THAN BREAST MILK.

4112
02:37:52,040 --> 02:37:56,144
WE ARE TRYING TO CHANGE THAT.

4113
02:37:56,144 --> 02:37:57,545
BRINGING TOGETHER 

4114
02:37:57,545 --> 02:37:58,212
CHARACTERIZATION WITH DATA 

4115
02:37:58,212 --> 02:37:59,547
SCIENCE TO UNDERSTAND MATERNAL 

4116
02:37:59,547 --> 02:38:01,115
AND INFANT HEALTH AND WITH THAT,

4117
02:38:01,115 --> 02:38:02,150
I WILL CONCLUDE.

4118
02:38:02,150 --> 02:38:03,684
THANK YOU SO MUCH.

4119
02:38:03,684 --> 02:38:06,421
>> THANK YOU DR. SHENHAV.

4120
02:38:06,421 --> 02:38:08,723
WE WILL HEAR FROM DR. PILAR 

4121
02:38:08,723 --> 02:38:09,123
OSSORIO.

4122
02:38:09,123 --> 02:38:10,892
PROFESSOR OF LAW AND BIOETHICS 

4123
02:38:10,892 --> 02:38:12,593
AT THE UNIVERSITY OF WISCONSIN.

4124
02:38:12,593 --> 02:38:16,064
AN INVESTIGATOR AND HEAD OF THE 

4125
02:38:16,064 --> 02:38:17,832
ETHICS PROGRAM AT THE -- 

4126
02:38:17,832 --> 02:38:19,200
INSTITUTE OF RESEARCH.

4127
02:38:19,200 --> 02:38:21,602
GOVERNANCE AND ETHICS INVOLVING 

4128
02:38:21,602 --> 02:38:26,674
HUMANS AND USES OF RACE AND 

4129
02:38:26,674 --> 02:38:26,941
ETHNICITY.

4130
02:38:26,941 --> 02:38:30,078
SHE DIRECTED THE ETHICS 

4131
02:38:30,078 --> 02:38:31,112
CONSULTATION SIFS THAT SERVES 

4132
02:38:31,112 --> 02:38:32,013
UNIVERSITY OF WISCONSIN.

4133
02:38:32,013 --> 02:38:35,783
SHE SERVED ON THE SECRETARY'S 

4134
02:38:35,783 --> 02:38:37,385
ADVISORY COMMITTEE FOR HUMAN 

4135
02:38:37,385 --> 02:38:39,887
PROTECTIONS AND NATIONAL HUMAN 

4136
02:38:39,887 --> 02:38:40,888
GENOME COUNCIL.

4137
02:38:40,888 --> 02:38:44,092
THE NATIONAL HEART LUNG AND 

4138
02:38:44,092 --> 02:38:45,426
BLOOD ADVISORY COUNCIL, ADVISORY

4139
02:38:45,426 --> 02:38:48,196
TO THE NIH DIRECTOR, SEVERAL 

4140
02:38:48,196 --> 02:38:48,896
COMMITTEES FOR THE NATIONAL 

4141
02:38:48,896 --> 02:38:50,598
ACADEMIES OF SCIENCES, 

4142
02:38:50,598 --> 02:38:52,600
ENGINEERING AND MEDICINE AND 

4143
02:38:52,600 --> 02:38:54,502
TWIZRY COMMITTEES FOR HEALTH 

4144
02:38:54,502 --> 02:38:54,735
CANADA.

4145
02:38:54,735 --> 02:39:05,246
WELCOME, DOCTOR PILAR OSSORIO.

4146
02:39:09,250 --> 02:39:11,285
>> WE ARE NOT ABLE TO HEAR
YOU 

4147
02:39:11,285 --> 02:39:21,496
YET, PILAR.

4148
02:39:35,743 --> 02:39:43,151
IT LOOKS LIKE YOU MAY STILL BE 

4149
02:39:43,151 --> 02:39:53,060
MUTED.

4150
02:39:53,060 --> 02:39:55,329
PERHAPS ONE OF OUR IT FOLKS CAN 

4151
02:39:55,329 --> 02:40:05,706
HELP US PROBLEM SOLVE.

4152
02:40:07,141 --> 02:40:08,643
DR. OSSORIO, I WILL SEND YOU THE

4153
02:40:08,643 --> 02:40:14,182
PHONE INFORMATION IF YOU WANT TO

4154
02:40:14,182 --> 02:40:16,484
TRY TO CALL IN I WILL SEND THAT 

4155
02:40:16,484 --> 02:40:26,794
TO YOU IN E-MAIL.

4156
02:41:00,695 --> 02:41:02,163
THANKS, EVERYONE, FOR YOUR 

4157
02:41:02,163 --> 02:41:03,798
PATIENCE WHILE WE WORK ON 

4158
02:41:03,798 --> 02:41:14,275
GETTING DR. OSSORIO UNMUTED.

4159
02:41:42,370 --> 02:41:46,340
JEROME OR PHILLIPE, I DON'T KNOW

4160
02:41:46,340 --> 02:41:49,076
IF EITHER OF YOU CAN OFFER 

4161
02:41:49,076 --> 02:41:49,377
SUGGESTIONS?

4162
02:41:49,377 --> 02:41:50,411
>> I'M SORRY, SAY THAT
AGAIN.

4163
02:41:50,411 --> 02:41:51,679
THIS IS JEROME.

4164
02:41:51,679 --> 02:41:54,282
>> HI, JEROME.

4165
02:41:54,282 --> 02:42:01,322
DR. OSSORIO IS NOT ABLE TO 

4166
02:42:01,322 --> 02:42:01,555
UNMUTE.

4167
02:42:01,555 --> 02:42:11,699
>> OKAY.

4168
02:42:18,039 --> 02:42:24,512
I CANNOT UNMUTE HER AT THE 

4169
02:42:24,512 --> 02:42:25,446
MOMENT.

4170
02:42:25,446 --> 02:42:27,148
>> SHE IS TRYING TO DIAL
IN.

4171
02:42:27,148 --> 02:42:28,883
>> SHE DIALED IN?

4172
02:42:28,883 --> 02:42:37,091
>> SHE IS TRYING TO NOW,
YEAH.

4173
02:42:37,091 --> 02:42:42,563
>> OKAY.

4174
02:42:42,563 --> 02:42:53,074
AND HOPEFULLY THIS WILL WORK.

4175
02:42:56,644 --> 02:43:07,021
CAN YOU TRY TO UNMUTE NOW.

4176
02:43:09,390 --> 02:43:11,525
JEROME, SHE IS IN BY FUNNY.

4177
02:43:11,525 --> 02:43:12,727
>> CAN YOU HEAR ME?

4178
02:43:12,727 --> 02:43:23,070
>> WE CAN HEAR YOU.

4179
02:43:25,072 --> 02:43:26,707
>> WAIT, DID WE LOSE HER.

4180
02:43:26,707 --> 02:43:28,142
>> WE MAY HAVE LOST YOU.

4181
02:43:28,142 --> 02:43:31,278
WE HEARD YOU, BUT NOW WE'VE LOST

4182
02:43:31,278 --> 02:43:41,355
YOU.

4183
02:43:54,668 --> 02:43:56,203
WE'LL GIVE THIS IS TRY AGAIN.

4184
02:43:56,203 --> 02:44:06,180
YOU CAN CALL BACK IN.

4185
02:44:06,180 --> 02:44:08,749
150IGS

4186
02:44:24,765 --> 02:44:26,200
>> IS SHE JOINING AGAIN?

4187
02:44:26,200 --> 02:44:27,067
>> YEAH.

4188
02:44:27,067 --> 02:44:32,773
SHE IS COMING IN NOW.

4189
02:44:32,773 --> 02:44:34,975
AND I HAVE ALLOWED THE 

4190
02:44:34,975 --> 02:44:37,445
MICROPHONE ON YOUR PHONE PILAR, 

4191
02:44:37,445 --> 02:44:40,314
BUT YOU MIGHT NEED TO UNMUTE 

4192
02:44:40,314 --> 02:44:41,148
MANUALLY ON YOUR PHONE.

4193
02:44:41,148 --> 02:44:51,692
YOU HAVE THE ABILITY TO UNMUTE.

4194
02:44:51,959 --> 02:44:52,693
>> ALL RIGHT.

4195
02:44:52,693 --> 02:44:54,495
CAN YOU HEAR ME NOW?

4196
02:44:54,495 --> 02:44:55,296
>> YES.

4197
02:44:55,296 --> 02:44:58,666
>> AWESOME.

4198
02:44:58,666 --> 02:44:58,866
OKAY.

4199
02:44:58,866 --> 02:45:03,938
HUGE APOLOGIES FOR THAT.

4200
02:45:03,938 --> 02:45:05,673
I DON'T KNOW WHY I AM MUTED.

4201
02:45:05,673 --> 02:45:15,583
HOLD ON HERE.

4202
02:45:15,583 --> 02:45:15,883
WOW.

4203
02:45:15,883 --> 02:45:18,052
THAT JUST TOOK SIX MINUTES AND 

4204
02:45:18,052 --> 02:45:22,256
10 SECONDS.

4205
02:45:22,256 --> 02:45:22,590
OKAY.

4206
02:45:22,590 --> 02:45:25,526
I AM SO VERY PLEASED TO BE 

4207
02:45:25,526 --> 02:45:27,528
SPEAKING WITH YOU TODAY WHERE I 

4208
02:45:27,528 --> 02:45:29,964
WILL TALK ABOUT ETHICAL 

4209
02:45:29,964 --> 02:45:33,367
BIOMEDICAL RESEARCH IN THE ERA 

4210
02:45:33,367 --> 02:45:43,777
OF DATA-DRIVEN SCIENCE.

4211
02:45:46,914 --> 02:45:49,717
I WORK FOR TWO PHARMACEUTICAL 

4212
02:45:49,717 --> 02:45:52,052
COMPANIES BUT I WON'T BE TALKING

4213
02:45:52,052 --> 02:45:54,355
ABOUT ANYTHING RELATED TO THEIR 

4214
02:45:54,355 --> 02:45:54,655
PRODUCTS.

4215
02:45:54,655 --> 02:45:57,525
YOU HEARD ABOUT NIH DATA 

4216
02:45:57,525 --> 02:45:58,392
RESOURCES, TODAY.

4217
02:45:58,392 --> 02:46:00,594
THIS IS MY CARTOON OF INDIVIDUAL

4218
02:46:00,594 --> 02:46:01,896
LEVEL HUMAN DATA.

4219
02:46:01,896 --> 02:46:05,599
AS THAT SHARING OFTEN OCCURS IN 

4220
02:46:05,599 --> 02:46:06,834
NIH-FUNDED RESEARCH, SO KEY 

4221
02:46:06,834 --> 02:46:08,369
POINTS HERE ARE THAT DATA SETS 

4222
02:46:08,369 --> 02:46:10,804
ARE DEIDENTIFIED, THEN DEPOSITED

4223
02:46:10,804 --> 02:46:14,174
IN A REPOSITORY RUN BY NIH AND 

4224
02:46:14,174 --> 02:46:17,444
SHARED WITH MANY RESEARCHERS 

4225
02:46:17,444 --> 02:46:18,512
AROUND THE WORLD.

4226
02:46:18,512 --> 02:46:21,348
AT LEAST FOR THOSE OF US WHO 

4227
02:46:21,348 --> 02:46:24,785
PRODUCE DATA, WE HOPE MANY 

4228
02:46:24,785 --> 02:46:26,020
RESEARCHERS FIND OUR DATA USEFUL

4229
02:46:26,020 --> 02:46:28,155
AND WANT TO ACCESS IT.

4230
02:46:28,155 --> 02:46:30,925
INDIVIDUAL LEVEL HUMAN DATA FROM

4231
02:46:30,925 --> 02:46:32,393
NIH-FUNDED RESEARCH GENERALLY 

4232
02:46:32,393 --> 02:46:34,028
ARE NOT FREELY AVAILABLE TO 

4233
02:46:34,028 --> 02:46:34,595
ANYBODY.

4234
02:46:34,595 --> 02:46:36,096
INSTEAD USERS MUST BE 

4235
02:46:36,096 --> 02:46:37,665
RESEARCHERS WHO ARE 

4236
02:46:37,665 --> 02:46:39,967
AUTHENTICATED BY NIH AND WHO, AT

4237
02:46:39,967 --> 02:46:42,436
A MINIMUM, SIGN A CONTRACT 

4238
02:46:42,436 --> 02:46:43,771
AGREEING TO TERMS AND CONDITIONS

4239
02:46:43,771 --> 02:46:44,939
FOR USING DATA.

4240
02:46:44,939 --> 02:46:47,074
THIS IS CALLED CONTROLLED 

4241
02:46:47,074 --> 02:46:47,308
ACCESS.

4242
02:46:47,308 --> 02:46:50,010
HERE I DEPICTED DEIDENTIFIED 

4243
02:46:50,010 --> 02:46:51,946
DATA IN THE REPOSITORY.

4244
02:46:51,946 --> 02:46:55,282
BY WHICH WE MEAN DATA STRIPPED 

4245
02:46:55,282 --> 02:46:57,952
OF EXPLICIT IDENTIFIERS, NAMES, 

4246
02:46:57,952 --> 02:47:00,154
ADDRESS OR SOCIAL SECURITY 

4247
02:47:00,154 --> 02:47:00,588
NUMBERS.

4248
02:47:00,588 --> 02:47:03,090
I HAVE ALSO DEPICTED SECONDARY 

4249
02:47:03,090 --> 02:47:03,290
USERS.

4250
02:47:03,290 --> 02:47:04,525
THESE ARE PEOPLE WHO HAVE NO 

4251
02:47:04,525 --> 02:47:08,228
PART IN DESIGNING THE PROTOCOL 

4252
02:47:08,228 --> 02:47:09,530
OR COLLECTING THE DATA, NO 

4253
02:47:09,530 --> 02:47:11,532
CONTACT OR RELATIONSHIP WITH 

4254
02:47:11,532 --> 02:47:12,733
RESEARCH PARTICIPANTS.

4255
02:47:12,733 --> 02:47:16,470
THEY ARE NOT INVOLVED IN GETTING

4256
02:47:16,470 --> 02:47:16,937
CONSENT FROM RESEARCH 

4257
02:47:16,937 --> 02:47:18,072
PARTICI

4258
02:47:18,072 --> 02:47:18,405
PARTICIPANTS.

4259
02:47:18,405 --> 02:47:20,641
THEY USE OF DEIDENTIFIED DATA AT

4260
02:47:20,641 --> 02:47:21,976
LEAST IN THE UNITED STATES AND 

4261
02:47:21,976 --> 02:47:24,612
MANY OTHER COUNTRIES IS NOT 

4262
02:47:24,612 --> 02:47:26,413
REGULATED AS HUMAN SUBJECTS 

4263
02:47:26,413 --> 02:47:26,947
RESEARCH.

4264
02:47:26,947 --> 02:47:29,083
UNDER THESE CIRCUMSTANCES, HOW 

4265
02:47:29,083 --> 02:47:31,652
DO WE PROMOTE ETHICAL USE OF THE

4266
02:47:31,652 --> 02:47:33,754
DATA AND MINIMIZE RISK TO PEOPLE

4267
02:47:33,754 --> 02:47:36,190
WHO ARE REPRESENTED IN THE DATA 

4268
02:47:36,190 --> 02:47:36,390
SET?

4269
02:47:36,390 --> 02:47:37,591
NEXT SLIDE, PLEASE.

4270
02:47:37,591 --> 02:47:38,759
TO DESCRIBE OUR RESPONSES TO 

4271
02:47:38,759 --> 02:47:41,261
THESE CONCERNS WE ARE NOW USES 

4272
02:47:41,261 --> 02:47:42,763
THE PHRASE RESPONSIBLE USE OF 

4273
02:47:42,763 --> 02:47:44,498
DATA BY WHICH, WHEN I USE THAT 

4274
02:47:44,498 --> 02:47:46,533
PHRASE, I MEAN USE THAT IS 

4275
02:47:46,533 --> 02:47:49,269
ETHICAL, SCIENTIFICALLY HIGH 

4276
02:47:49,269 --> 02:47:50,904
QUALITY, AND LEGAL.

4277
02:47:50,904 --> 02:47:53,941
AND TO ENCOURAGE RESPONSIBLE USE

4278
02:47:53,941 --> 02:47:56,410
WE NEED AN ENVIRONMENT OR 

4279
02:47:56,410 --> 02:47:58,379
ECOSYSTEM THAT INCLUDES GOOD 

4280
02:47:58,379 --> 02:48:00,781
GOVERNANCE BY THE RELEVANT 

4281
02:48:00,781 --> 02:48:03,651
INSTITUTIONS AND RESPONSIBLE AND

4282
02:48:03,651 --> 02:48:08,422
RESPONSIVE SCIENTIFIC CULTURE OF

4283
02:48:08,422 --> 02:48:10,290
ETHICAL DATA USE.

4284
02:48:10,290 --> 02:48:10,958
GOVERNANCE REFERS TO DATA 

4285
02:48:10,958 --> 02:48:12,726
MANAGEMENT PROCESSES AND 

4286
02:48:12,726 --> 02:48:13,627
INSTITUTIONS THAT ESTABLISH THE 

4287
02:48:13,627 --> 02:48:16,430
AUTHORITY FOR MAKING DECISIONS 

4288
02:48:16,430 --> 02:48:20,167
ABOUT DATA AND HAVE TRANSPARENT 

4289
02:48:20,167 --> 02:48:22,202
PARAMETERS AND PROCESSES FOR 

4290
02:48:22,202 --> 02:48:24,538
MAKING THOSE DECISIONS.

4291
02:48:24,538 --> 02:48:26,306
RELEVANT GOVERNANCE INSTITUTIONS

4292
02:48:26,306 --> 02:48:28,075
ARE RESEARCH ORGANIZATIONS 

4293
02:48:28,075 --> 02:48:29,677
UNIVERSITIES, BIOTECH COMPANIES,

4294
02:48:29,677 --> 02:48:32,379
NIH, INCLUDES RESPONSIBLE USE OF

4295
02:48:32,379 --> 02:48:35,115
DATA COMMITTEES IN LARGE 

4296
02:48:35,115 --> 02:48:35,382
PROJECTS.

4297
02:48:35,382 --> 02:48:39,820
AND DATA REPOSITORY AND PROBABLY

4298
02:48:39,820 --> 02:48:41,422
OTHERS AS WELL.

4299
02:48:41,422 --> 02:48:44,425
SO TO DEVELOP AND RESPONSE OF 

4300
02:48:44,425 --> 02:48:49,129
SCIENTIFIC CULTURE THAT FOCUSES 

4301
02:48:49,129 --> 02:48:51,598
ON RESPONSIBLE DATA USE, WE NEED

4302
02:48:51,598 --> 02:48:54,268
TO COLLABORATE AND CONSULT WITH 

4303
02:48:54,268 --> 02:48:56,637
A VARIETY DIFFERENT KINDS OF 

4304
02:48:56,637 --> 02:48:58,639
EXPERTISE AND THOSE CERTAINLY 

4305
02:48:58,639 --> 02:49:01,875
INCLUDE RESEARCH PARTICIPANTS OR

4306
02:49:01,875 --> 02:49:02,476
PERSPECTIVE PARTICIPANTS AND 

4307
02:49:02,476 --> 02:49:08,615
THEIR COMMUNITIES.

4308
02:49:08,615 --> 02:49:10,184
SHOUTOUT TO DR. CARLISLE WHEN HE

4309
02:49:10,184 --> 02:49:13,654
WAS TALKING ABOUT THE ENGAGEMENT

4310
02:49:13,654 --> 02:49:16,056
WORK HIS GROUP HAS DONE.

4311
02:49:16,056 --> 02:49:19,293
RESPONSIBILITY DATA USE 

4312
02:49:19,293 --> 02:49:23,464
CONSTITUTED TRUSTWORTHY BEHAVIOR

4313
02:49:23,464 --> 02:49:25,499
JUSTIFYING SOCIETY AND OUR 

4314
02:49:25,499 --> 02:49:26,433
PARTICIPANT'S TRUST IF THEY 

4315
02:49:26,433 --> 02:49:28,502
SHOULD DECIDE TO TRUST US.

4316
02:49:28,502 --> 02:49:31,405
ALL THE ACTORS IN THE 

4317
02:49:31,405 --> 02:49:33,474
DATA-DRIVEN ECOSYSTEM HAVE SOME 

4318
02:49:33,474 --> 02:49:36,043
RULE TO PLAY IN PROMOTING 

4319
02:49:36,043 --> 02:49:36,710
RESPONSIBLE USE.

4320
02:49:36,710 --> 02:49:38,378
DATA PRODUCERS FOR INSTANCE NEED

4321
02:49:38,378 --> 02:49:41,281
TO CONSIDER THE IMPLICATIONS FOR

4322
02:49:41,281 --> 02:49:42,916
DATA SHARING FROM THEIR 

4323
02:49:42,916 --> 02:49:45,452
PROJECT'S INCEPTION AND THROUGH 

4324
02:49:45,452 --> 02:49:46,987
THE LIFE CYCLE OF THE PROJECT 

4325
02:49:46,987 --> 02:49:48,388
AND THE DATA.

4326
02:49:48,388 --> 02:49:51,258
I'M NOT GOING TO LIST A PROCESS 

4327
02:49:51,258 --> 02:49:54,328
OF RULES PEOPLE HAVE DEVELOPED 

4328
02:49:54,328 --> 02:49:57,731
TO PROMOTE RESPONSIBLE USE.

4329
02:49:57,731 --> 02:49:59,733
THAT WOULD BORE YOU TO TEARS.

4330
02:49:59,733 --> 02:50:02,169
I WILL GIVE AN EXAMPLE.

4331
02:50:02,169 --> 02:50:03,270
DATA PRODUCERS HAVE AN 

4332
02:50:03,270 --> 02:50:05,506
OBLIGATION TO KNOW THEIR OWN 

4333
02:50:05,506 --> 02:50:08,242
RELEASED DATA SETS VERY WELL AND

4334
02:50:08,242 --> 02:50:10,644
WRITE DATA RELEASED VOTES TO 

4335
02:50:10,644 --> 02:50:12,646
HELP NAVIGATE THE STRENGTHS, 

4336
02:50:12,646 --> 02:50:14,515
WEAKNESSES AND QUIRKS OF THE 

4337
02:50:14,515 --> 02:50:14,715
DATA.

4338
02:50:14,715 --> 02:50:15,983
EVERY DATA SET HAS WEAKNESSES 

4339
02:50:15,983 --> 02:50:17,050
AND QUIRKS.

4340
02:50:17,050 --> 02:50:18,986
IT IS INEVITABLE.

4341
02:50:18,986 --> 02:50:20,420
NOBODY WILL KNOW THEM BETTER 

4342
02:50:20,420 --> 02:50:21,622
THAN THE DATA PRODUCERS.

4343
02:50:21,622 --> 02:50:24,124
SO FOR INSTANCE, IN A DATA SET, 

4344
02:50:24,124 --> 02:50:25,425
SOME VARIABLES MIGHT HAVE A FAIR

4345
02:50:25,425 --> 02:50:28,128
AMOUNT OF MISSING DATA.

4346
02:50:28,128 --> 02:50:30,497
IS THE MISSING NONRANDOM?

4347
02:50:30,497 --> 02:50:32,566
IF PEOPLE OF ONE SEX OR INCOME 

4348
02:50:32,566 --> 02:50:35,469
LEVEL ARE SYSTEMATICALLY MISSING

4349
02:50:35,469 --> 02:50:38,605
MORE DATA, HOW DO WE ANALYZE THE

4350
02:50:38,605 --> 02:50:40,874
DATA TO REPORT RESULTS WITHOUT 

4351
02:50:40,874 --> 02:50:42,509
DRAWING UNWARRANTED CONCLUSIONS?

4352
02:50:42,509 --> 02:50:45,445
DATA PRODUCERS SHOULD ALERT 

4353
02:50:45,445 --> 02:50:48,148
USERS TO THESE ISSUES AND 

4354
02:50:48,148 --> 02:50:49,349
POSSIBLY SELECT ANALYTICAL 

4355
02:50:49,349 --> 02:50:53,053
APPROACHES FOR ADDRESSING THEM.

4356
02:50:53,053 --> 02:50:54,922
SECONDARY USERS ARE REQUIRES TO 

4357
02:50:54,922 --> 02:50:56,657
READ THE DATA RELEASE NOTES.

4358
02:50:56,657 --> 02:50:59,960
IN MANY CASES SECONDARY DATA 

4359
02:50:59,960 --> 02:51:01,328
USERS WILL USE SOME DATA NOT 

4360
02:51:01,328 --> 02:51:03,297
VERY FAMILIAR WITH THAT TYPE OF 

4361
02:51:03,297 --> 02:51:07,801
DATA AND HAVEN'T DONE ANALYSIS 

4362
02:51:07,801 --> 02:51:09,970
USING THAT TYPE OF DATA IN THE 

4363
02:51:09,970 --> 02:51:10,170
PAST.

4364
02:51:10,170 --> 02:51:12,206
THEY ARE OBLIGATES TO LEARN 

4365
02:51:12,206 --> 02:51:13,440
APPROPRIATE AND RIGOROUS 

4366
02:51:13,440 --> 02:51:15,742
ANALYSES AND THAT IS LEARNING 

4367
02:51:15,742 --> 02:51:17,911
THE RELEVANT SOCIAL CONTEXT FOR 

4368
02:51:17,911 --> 02:51:18,879
UNFAMILIAR VARIABLES.

4369
02:51:18,879 --> 02:51:20,080
FOR EXAMPLE, A SECONDARY 

4370
02:51:20,080 --> 02:51:23,217
RESEARCHER WHO, FOR THE FIRST 

4371
02:51:23,217 --> 02:51:25,452
TIME, ANALYZES DATA PERTAINING 

4372
02:51:25,452 --> 02:51:28,856
TO PARTICIPANT'S SUBSTANCE USE 

4373
02:51:28,856 --> 02:51:31,258
DISORDER, COULD WRITE A PAPER 

4374
02:51:31,258 --> 02:51:33,327
USING STIGMATIZING LANGUAGE 

4375
02:51:33,327 --> 02:51:36,263
AROUND SUD BECAUSE THE RESEARCH 

4376
02:51:36,263 --> 02:51:38,065
DOESN'T REALLY KNOW BETTER.

4377
02:51:38,065 --> 02:51:40,067
STIGMATIZING LANGUAGE IN A 

4378
02:51:40,067 --> 02:51:43,270
HIGHLY REGARDED PAPER COULD 

4379
02:51:43,270 --> 02:51:45,539
REINFORCE SOCIAL STIGMA, CAUSING

4380
02:51:45,539 --> 02:51:46,206
RESEARCH PARTICIPANTS AND PEOPLE

4381
02:51:46,206 --> 02:51:50,544
LIKE THEM TO BE TREATED POORLY 

4382
02:51:50,544 --> 02:51:53,947
IN SOCIETY AND PERPETUATING 

4383
02:51:53,947 --> 02:51:56,250
THEIR MARGINALIZATION.

4384
02:51:56,250 --> 02:51:58,619
IT CAN PRODUCE DIRECT AND 

4385
02:51:58,619 --> 02:52:00,320
INDIRECT INFORMATIONAL HARMS IF 

4386
02:52:00,320 --> 02:52:04,024
DONE OUT OF IGNORANCE OR 

4387
02:52:04,024 --> 02:52:04,358
CARELESSNESS.

4388
02:52:04,358 --> 02:52:06,693
SO DATA PRODUCERS HAVE A ROLE IN

4389
02:52:06,693 --> 02:52:17,237
HELPING WELL-MEANING SECONDARY 

4390
02:52:18,038 --> 02:52:18,572
DATA USERS TO DO THE KIND OF 

4391
02:52:18,572 --> 02:52:19,339
SCIENCE THAT THEY WANT TO DO, 

4392
02:52:19,339 --> 02:52:19,940
THAT ACTUALLY PROMOTES SOCIAL 

4393
02:52:19,940 --> 02:52:21,775
BENEFIT RATHER THAN CAUSING 

4394
02:52:21,775 --> 02:52:22,342
HARM.

4395
02:52:22,342 --> 02:52:28,615
SOME TYPES OF DATA CARRY HIGHER 

4396
02:52:28,615 --> 02:52:29,016
RISK.

4397
02:52:29,016 --> 02:52:36,690
FOR WOMEN IN POST ROE V. WADE 

4398
02:52:36,690 --> 02:52:39,192
WORLD, IT COULD PUT US AT LEGAL 

4399
02:52:39,192 --> 02:52:41,595
RISK IN SOME STATES AT SOME 

4400
02:52:41,595 --> 02:52:41,995
TIMES.

4401
02:52:41,995 --> 02:52:44,097
IT BEHOOVES RESEARCHERS TO LEARN

4402
02:52:44,097 --> 02:52:48,402
ABOUT THESE RISKS AND DESIGN 

4403
02:52:48,402 --> 02:52:49,736
SECONDARY ANALYSES IN WAYS THAT 

4404
02:52:49,736 --> 02:52:53,340
MITIGATE THESE RISKS.

4405
02:52:53,340 --> 02:52:54,908
ONE WAY IS MAINTAINING DATA 

4406
02:52:54,908 --> 02:52:59,279
CONTRIBUTORS' ANONYMITY AND 

4407
02:52:59,279 --> 02:53:03,817
PRIVACY.

4408
02:53:03,817 --> 02:53:04,451
PRIVACY IS AN INSTRUMENTAL VALUE

4409
02:53:04,451 --> 02:53:05,085
BECAUSE IT HELPS PROTECT PEOPLE 

4410
02:53:05,085 --> 02:53:07,554
FROM DATA-RELATED RISK AND HARM.

4411
02:53:07,554 --> 02:53:08,188
IT IS ALSO A NON-INSTRUMENTAL 

4412
02:53:08,188 --> 02:53:09,823
VALUE IN SO FAR IT IS A 

4413
02:53:09,823 --> 02:53:12,326
COMPONENT OR CONSTITUENTS OF 

4414
02:53:12,326 --> 02:53:15,595
PEOPLE'S AUTONOMY, THEIR 

4415
02:53:15,595 --> 02:53:16,229
IDENTITY DEVELOPMENT AND THEIR 

4416
02:53:16,229 --> 02:53:20,467
FLOURISHING.

4417
02:53:20,467 --> 02:53:24,471
I GUESS AT THIS POINT YOU MIGHT 

4418
02:53:24,471 --> 02:53:29,242
SAY YOU MIGHT WONDER WHY IT 

4419
02:53:29,242 --> 02:53:32,045
MATTERS WHY WE PROTECT PEOPLE'S 

4420
02:53:32,045 --> 02:53:32,245
DATA?

4421
02:53:32,245 --> 02:53:36,483
DR. HILL PROVIDED AN EXCELLENT 

4422
02:53:36,483 --> 02:53:38,218
EXPLANATION FOR WHY IT MATTERS 

4423
02:53:38,218 --> 02:53:41,955
AND I WILL BRIEFLY REITERATE 

4424
02:53:41,955 --> 02:53:43,590
DATA DEIDENTIFICATION IS NOT A 

4425
02:53:43,590 --> 02:53:45,192
PERFECT OR ALL OR NOTHING 

4426
02:53:45,192 --> 02:53:45,993
CHARACTERISTIC OF DATA.

4427
02:53:45,993 --> 02:53:48,562
DATA CAN BE MORE OR LESS 

4428
02:53:48,562 --> 02:53:49,896
IDENTIFIED AND ANY DATA SET 

4429
02:53:49,896 --> 02:53:51,932
WHERE THERE ARE MANY VARIABLES 

4430
02:53:51,932 --> 02:53:55,702
OR FEATURES FOR EVERY PERSON OR 

4431
02:53:55,702 --> 02:53:58,739
INDIVIDUAL WAITING INFORMATION 

4432
02:53:58,739 --> 02:54:00,607
SUCH AS GENOMIC INFORMATION, FOR

4433
02:54:00,607 --> 02:54:02,309
THOSE DATA SETS THERE IS A SMALL

4434
02:54:02,309 --> 02:54:04,511
CHANCE A TECHNOLOGICALLY 

4435
02:54:04,511 --> 02:54:06,146
SOPHISTICATED PERSON WITH ACCESS

4436
02:54:06,146 --> 02:54:07,581
TO THE DATA COULD REIDENTIFY 

4437
02:54:07,581 --> 02:54:09,216
SOME INDIVIDUALS IN THE DATA 

4438
02:54:09,216 --> 02:54:09,583
SET.

4439
02:54:09,583 --> 02:54:12,753
SO EVEN THOUGH WE CALL THESE 

4440
02:54:12,753 --> 02:54:18,625
SHARED DATA SETS DEIDENTIFIED, 

4441
02:54:18,625 --> 02:54:19,226
WE STILL NEED TO CONTROL WHO 

4442
02:54:19,226 --> 02:54:19,860
ACCESSES THEM, WHAT IS DONE WITH

4443
02:54:19,860 --> 02:54:22,229
THEM, AND TAKE STEPS TO MAKE 

4444
02:54:22,229 --> 02:54:28,668
REIDENTIFICATION DIFFICULT AND 

4445
02:54:28,668 --> 02:54:28,935
UNLIKELY.

4446
02:54:28,935 --> 02:54:31,104
SO RESEARCH PROJECTS AT NIH HAVE

4447
02:54:31,104 --> 02:54:33,306
MANY POLICIES, PRACTICES AND 

4448
02:54:33,306 --> 02:54:35,442
PROCEDURES FOR PROTECTING THE 

4449
02:54:35,442 --> 02:54:37,511
PRIVACY AND MAINTAINING THE 

4450
02:54:37,511 --> 02:54:41,882
ANONYMITY OF RESEARCH 

4451
02:54:41,882 --> 02:54:42,516
PARTICIPANTS AND PEOPLE WHOSE 

4452
02:54:42,516 --> 02:54:44,151
DATA WE ARE USING.

4453
02:54:44,151 --> 02:54:45,352
COULD WE GO TWO SLIDES FORWARD, 

4454
02:54:45,352 --> 02:54:49,156
PLEASE?

4455
02:54:49,156 --> 02:54:49,523
YEAH.

4456
02:54:49,523 --> 02:54:49,723
OKAY.

4457
02:54:49,723 --> 02:54:52,993
AND AGAIN, I DON'T HAVE TIME TO 

4458
02:54:52,993 --> 02:54:55,962
EXPLORE AN EXHAUSTIVE LIST AND 

4459
02:54:55,962 --> 02:54:57,130
I'M NOT EVEN GOING TO EXPLORE 

4460
02:54:57,130 --> 02:54:58,999
THIS SHORT LIST.

4461
02:54:58,999 --> 02:55:01,401
I'M GOING TO JUST SKIP RIGHT TO 

4462
02:55:01,401 --> 02:55:06,606
THE LAST BULLET POINT BECAUSE 

4463
02:55:06,606 --> 02:55:08,442
THIS IS PERHAPS A CONTROVERSIAL 

4464
02:55:08,442 --> 02:55:10,243
THING FOR ME TO SAY.

4465
02:55:10,243 --> 02:55:14,448
I THINK IN SOME CASES CERTAIN 

4466
02:55:14,448 --> 02:55:16,049
VARIABLES PRESENT SUCH HIGH 

4467
02:55:16,049 --> 02:55:18,685
SOCIAL OR LEGAL RISK THAT WE 

4468
02:55:18,685 --> 02:55:20,887
SHOULDN'T COLLECT, ANALYZE OR 

4469
02:55:20,887 --> 02:55:23,056
SHARE THOSE VARIABLES UNLESS IT 

4470
02:55:23,056 --> 02:55:26,493
IS REALLY NECESSARY TO ANSWER AN

4471
02:55:26,493 --> 02:55:27,127
IMPORTANT SCIENTIFIC QUESTION.

4472
02:55:27,127 --> 02:55:29,162
TO GIVE AN EXAMPLE, I'M PART OF 

4473
02:55:29,162 --> 02:55:32,499
A STUDY WHERE AFTER A COUPLE OF 

4474
02:55:32,499 --> 02:55:36,670
YEARS OF DESIGNING OUR PROJECT 

4475
02:55:36,670 --> 02:55:39,039
WE DETERMINED THE LEGAL RISK OF 

4476
02:55:39,039 --> 02:55:41,441
COLLECTING DATA ON A NEWBORN'S 

4477
02:55:41,441 --> 02:55:43,677
POSITIVE TOXICOLOGY ARE SO HIGH 

4478
02:55:43,677 --> 02:55:45,412
THAT WE WOULD NOT COLLECT THOSE 

4479
02:55:45,412 --> 02:55:46,713
DATA.

4480
02:55:46,713 --> 02:55:49,382
NEWBORN'S POSITIVE TOXICOLOGY IS

4481
02:55:49,382 --> 02:55:53,320
INDICATIVE OF PRENATAL SUBSTANCE

4482
02:55:53,320 --> 02:55:53,854
EXPOS

4483
02:55:53,854 --> 02:55:55,989
EXPOSURE, OFTEN EXPOSURE TO 

4484
02:55:55,989 --> 02:55:56,756
ILLEGAL DRUGS.

4485
02:55:56,756 --> 02:55:57,824
EVERY STATE IN THE UNITED STATES

4486
02:55:57,824 --> 02:56:00,260
HAS LAWS REQUIRING THAT 

4487
02:56:00,260 --> 02:56:03,063
INFORMATION BE CONVEYED TO A 

4488
02:56:03,063 --> 02:56:07,367
CHILD WELFARE AGENCY.

4489
02:56:07,367 --> 02:56:09,436
SO WE DETERMINED THAT WE COULD 

4490
02:56:09,436 --> 02:56:11,505
ACTUALLY DO OUR STUDY AND ANSWER

4491
02:56:11,505 --> 02:56:14,074
OUR SCIENTIFIC QUESTIONS WITHOUT

4492
02:56:14,074 --> 02:56:16,009
THAT PARTICULAR PIECE OF 

4493
02:56:16,009 --> 02:56:18,011
INFORMATION ON PRENATAL 

4494
02:56:18,011 --> 02:56:19,045
SUBSTANCE EXPOSURE.

4495
02:56:19,045 --> 02:56:21,581
WE HAD OTHER WAYS OF LEARNING 

4496
02:56:21,581 --> 02:56:23,950
ABOUT PRENATAL SUBSTANCE 

4497
02:56:23,950 --> 02:56:24,951
EXPOSURE THAT WERE MORE 

4498
02:56:24,951 --> 02:56:26,820
DIFFICULT TO COLLECT, BUT 

4499
02:56:26,820 --> 02:56:29,689
EQUALLY AND MAYBE MORE 

4500
02:56:29,689 --> 02:56:31,825
SCIENTIFICALLY VALID.

4501
02:56:31,825 --> 02:56:35,529
WE PRIORITIZE OUR PARTICIPANT'S 

4502
02:56:35,529 --> 02:56:37,030
INFORMATIONAL PRIVACY OVER THE 

4503
02:56:37,030 --> 02:56:39,332
EASE OF DOING OUR SCIENCE.

4504
02:56:39,332 --> 02:56:42,602
AND I THINK THAT IF RESEARCHERS 

4505
02:56:42,602 --> 02:56:44,504
ARE COLLECTING VARIABLES THAT 

4506
02:56:44,504 --> 02:56:45,172
PARTICIPANTS VIEW AS 

4507
02:56:45,172 --> 02:56:46,606
PARTICULARLY RISKY, THE 

4508
02:56:46,606 --> 02:56:48,275
RESEARCHERS SHOULD BE ABLE TO 

4509
02:56:48,275 --> 02:56:49,676
EXPLAIN WHY THAT INFORMATION IS 

4510
02:56:49,676 --> 02:56:51,711
NECESSARY TO ANSWER THEIR 

4511
02:56:51,711 --> 02:56:53,713
SCIENTIFIC QUESTION AND EXPLAIN 

4512
02:56:53,713 --> 02:56:54,548
ANY HEIGHTENED PRIVACY AND 

4513
02:56:54,548 --> 02:56:57,484
SECURITY PROTECTIONS THEY HAVE 

4514
02:56:57,484 --> 02:56:59,252
IMPLEMENTED.

4515
02:56:59,252 --> 02:57:01,755
NEXT SLIDE, PLEASE.

4516
02:57:01,755 --> 02:57:03,356
THEN YOU CAN GO TO THE NEXT 

4517
02:57:03,356 --> 02:57:03,557
SLIDE.

4518
02:57:03,557 --> 02:57:05,025
AT THIS POINT I HAVE BEEN 

4519
02:57:05,025 --> 02:57:06,526
TALKING ABOUT STEPS THAT 

4520
02:57:06,526 --> 02:57:08,061
RESEARCHERS CAN TAKE TO ENGAGE 

4521
02:57:08,061 --> 02:57:09,829
IN RESPONSIBLE USE OF DATA, 

4522
02:57:09,829 --> 02:57:11,264
PROCESSES AND PROCEDURES.

4523
02:57:11,264 --> 02:57:13,133
BUT THE NEXT COUPLE OF SLIDES I 

4524
02:57:13,133 --> 02:57:15,235
WANT TO TAKE A COUPLE OF MINUTES

4525
02:57:15,235 --> 02:57:18,371
BRIEFLY TO TALK ABOUT THE OTHER 

4526
02:57:18,371 --> 02:57:19,172
GOVERNESS MECHANISMS AND 

4527
02:57:19,172 --> 02:57:19,873
PARTICULARLY LEGAL ONES.

4528
02:57:19,873 --> 02:57:24,978
SO THE LAW IS PART OF DATA 

4529
02:57:24,978 --> 02:57:25,278
GOVERNANCE.

4530
02:57:25,278 --> 02:57:26,846
SO IF WE CAN GO TO THE NEXT 

4531
02:57:26,846 --> 02:57:28,782
SLIDE, THE FIRST THING I WANT TO

4532
02:57:28,782 --> 02:57:30,817
TALK ABOUT IS CERTIFICATES OF 

4533
02:57:30,817 --> 02:57:31,451
CONFIDENTIALITY.

4534
02:57:31,451 --> 02:57:34,421
THIS IS A LEGAL MECHANISM THAT 

4535
02:57:34,421 --> 02:57:37,624
IS SPECIFICALLY DESIGNED TO 

4536
02:57:37,624 --> 02:57:40,427
PROTECT RESEARCH PARTICIPANTS 

4537
02:57:40,427 --> 02:57:44,397
INFORMATIONAL PRIVACY.

4538
02:57:44,397 --> 02:57:45,599
NEXT SLIDE.

4539
02:57:45,599 --> 02:57:47,200
THIS IS FEDERAL LAW THAT 

4540
02:57:47,200 --> 02:57:50,270
REQUIRES THE SECRETARY OF HEALTH

4541
02:57:50,270 --> 02:57:51,238
AND HUMAN SERVICES ISSUES A COC 

4542
02:57:51,238 --> 02:57:54,841
TO ANY RESEARCHER WHO COLLECTS 

4543
02:57:54,841 --> 02:57:55,742
IDENTIFIABLE SENSITIVE 

4544
02:57:55,742 --> 02:57:57,143
INFORMATION AS PART OF THEIR 

4545
02:57:57,143 --> 02:57:57,611
RESEARCH.

4546
02:57:57,611 --> 02:58:00,747
THE LAW DEFINES IDENTIFIABLE 

4547
02:58:00,747 --> 02:58:01,948
SENSITIVE INFORMATION AS ANY 

4548
02:58:01,948 --> 02:58:03,049
INFORMATION ABOUT AN INDIVIDUAL 

4549
02:58:03,049 --> 02:58:05,252
GATHERED AND USED IN RESEARCH 

4550
02:58:05,252 --> 02:58:06,453
AND IDENTIFIED A PERSON OR FOR 

4551
02:58:06,453 --> 02:58:08,355
WHICH THERE IS AT LEAST A VERY 

4552
02:58:08,355 --> 02:58:10,090
SMALL RISK THAT IT COULD BE 

4553
02:58:10,090 --> 02:58:10,924
COMBINED WITH OTHER INFORMATION 

4554
02:58:10,924 --> 02:58:14,828
TO IDENTIFY A PERSON.

4555
02:58:14,828 --> 02:58:17,163
SO ONE THING YOU'LL NOTICE ABOUT

4556
02:58:17,163 --> 02:58:20,000
THAT DEFINITION IS IT SAYS 

4557
02:58:20,000 --> 02:58:21,034
IDENTIFIABLE SENSITIVE 

4558
02:58:21,034 --> 02:58:21,334
INFORMATION.

4559
02:58:21,334 --> 02:58:23,970
SENSITIVE DROPS OUT OF THE 

4560
02:58:23,970 --> 02:58:24,537
PICTURE.

4561
02:58:24,537 --> 02:58:26,239
ANY IDENTIFIABLE INFORMATION 

4562
02:58:26,239 --> 02:58:27,274
GATHERED IN RESEARCH IS 

4563
02:58:27,274 --> 02:58:29,376
PROTECTED BY THE COC.

4564
02:58:29,376 --> 02:58:32,579
THE SECOND THING ABOUT THE 

4565
02:58:32,579 --> 02:58:35,015
DEFINITION IS IT VERY BROAD AND 

4566
02:58:35,015 --> 02:58:38,585
ACTUALLY INCLUDES SOME OF THE 

4567
02:58:38,585 --> 02:58:39,452
NOMINALLY DEIDENTIFIED 

4568
02:58:39,452 --> 02:58:42,455
INFORMATION WE KEEP IN 

4569
02:58:42,455 --> 02:58:42,789
REPOSITORIES.

4570
02:58:42,789 --> 02:58:44,190
AND PARTICULARLY GENOMIC 

4571
02:58:44,190 --> 02:58:45,458
INFORMATION AND ANY ASSOCIATED 

4572
02:58:45,458 --> 02:58:49,663
INFORMATION IN A DATA SET.

4573
02:58:49,663 --> 02:58:50,497
BECAUSE THAT IS INDIVIDUAL 

4574
02:58:50,497 --> 02:58:53,066
INFORMATION AND THERE IS A SMALL

4575
02:58:53,066 --> 02:58:55,268
CHANCE IT COULD REIDENTIFY A 

4576
02:58:55,268 --> 02:58:55,902
PERSON.

4577
02:58:55,902 --> 02:58:58,838
SO IF A COC APPLIES, THEN 

4578
02:58:58,838 --> 02:59:00,840
RESEARCHERS ARE PROHIBITED FROM 

4579
02:59:00,840 --> 02:59:02,776
DISCLOSING PARTICIPANTS NAMES OR

4580
02:59:02,776 --> 02:59:06,012
OTHER IDENTIFYING INFORMATION OR

4581
02:59:06,012 --> 02:59:11,251
BIOSPECIMENS TO PERSONS NOT 

4582
02:59:11,251 --> 02:59:13,620
CONNECTED WITH THE RESEARCH 

4583
02:59:13,620 --> 02:59:14,954
UNLESS STATUTORY EXCEPTIONS 

4584
02:59:14,954 --> 02:59:15,155
APPLY.

4585
02:59:15,155 --> 02:59:17,457
I LISTED THEM ON THIS SLIDE.

4586
02:59:17,457 --> 02:59:20,126
THERE IS A FOURTH EXCEPTION BUT 

4587
02:59:20,126 --> 02:59:22,095
IT IS BASICALLILY SUBSUMED INTO 

4588
02:59:22,095 --> 02:59:23,963
BULLET POINT NUMBER TWO.

4589
02:59:23,963 --> 02:59:25,732
DISCLOSURE OF RESEARCH 

4590
02:59:25,732 --> 02:59:28,101
INFORMATION IS PERMITTED IF THE 

4591
02:59:28,101 --> 02:59:29,402
PARTICIPANT TO WHOM THE 

4592
02:59:29,402 --> 02:59:30,704
INFORMATION PERTAINS CONSENTS TO

4593
02:59:30,704 --> 02:59:31,938
THAT DISCLOSURE.

4594
02:59:31,938 --> 02:59:33,506
NEXT SLIDE, PLEASE.

4595
02:59:33,506 --> 02:59:36,076
SO THE COC ALSO PROHIBITS 

4596
02:59:36,076 --> 02:59:38,578
RESEARCHERS FROM DISCLOSING 

4597
02:59:38,578 --> 02:59:39,245
IDENTIFIABLE RESEARCH 

4598
02:59:39,245 --> 02:59:43,583
INFORMATION IN ANY LEGAL, 

4599
02:59:43,583 --> 02:59:44,584
ADMINISTRATIVE, LEGISLATIVE OR 

4600
02:59:44,584 --> 02:59:46,052
OTHER PROCEEDING.

4601
02:59:46,052 --> 02:59:49,055
IT PROHIBITS DISCLOSURE TO 

4602
02:59:49,055 --> 02:59:49,756
FEDERAL, STATE OR LOCAL 

4603
02:59:49,756 --> 02:59:51,257
GOVERNMENT ACTORS AND LAW 

4604
02:59:51,257 --> 02:59:52,926
ENFORCEMENT ACTORS AS WELL AS TO

4605
02:59:52,926 --> 02:59:55,462
PRIVATE PERSONS NOT CONNECTED 

4606
02:59:55,462 --> 02:59:56,563
WITH THE RESEARCH.

4607
02:59:56,563 --> 03:00:00,600
AND IF A COC DOES APPLY TO SOME 

4608
03:00:00,600 --> 03:00:02,569
DATA, THEN IT APPLIES TO THAT 

4609
03:00:02,569 --> 03:00:07,040
DATA AND ALL COPIES OF IT 

4610
03:00:07,040 --> 03:00:07,574
FOREVER.

4611
03:00:07,574 --> 03:00:18,118
OR AS THE LAW SAYS, PERPETUITY.

4612
03:00:24,090 --> 03:00:24,557
SO NIH HAS A VERY HOPEFUL 

4613
03:00:24,557 --> 03:00:25,158
WEBSITE EXPLAINING MORE ABOUT 

4614
03:00:25,158 --> 03:00:25,725
COCs IF YOU ARE INTERESTED.

4615
03:00:25,725 --> 03:00:26,359
YOU CAN GOOGLE NIH COC AND FIND 

4616
03:00:26,359 --> 03:00:26,526
IT.

4617
03:00:26,526 --> 03:00:27,160
I HAVE A HALF MINUTE LEFT.

4618
03:00:27,160 --> 03:00:28,128
NEXT SLIDE, PLEASE.

4619
03:00:28,128 --> 03:00:30,630
I WILL JUST SAY TWO THINGS ABOUT

4620
03:00:30,630 --> 03:00:33,666
DATA USE CERTIFICATIONS.

4621
03:00:33,666 --> 03:00:36,302
NOT THE FEATHERING KIND OF DUCK.

4622
03:00:36,302 --> 03:00:39,839
IT IS A CONTRACT BETWEEN A DATA 

4623
03:00:39,839 --> 03:00:42,275
REPOSITORY AND THEIR 

4624
03:00:42,275 --> 03:00:42,842
INSTITUTION.

4625
03:00:42,842 --> 03:00:46,346
AND DUCS HAVE BEEN SOMEWHAT 

4626
03:00:46,346 --> 03:00:49,682
SUCCESSFUL IN HELPING AND 

4627
03:00:49,682 --> 03:01:00,193
PROMOTING RESPONSIBLE USE OF 

4628
03:01:01,194 --> 03:01:01,761
DATA AND IN PARTICULAR PROMOTING

4629
03:01:01,761 --> 03:01:02,328
GOOD PRACTICES AROUND DATA 

4630
03:01:02,328 --> 03:01:02,962
SECURITY AND PARTICIPANT PRIVACY

4631
03:01:02,962 --> 03:01:03,563
BECAUSE USERS AGREE TO THINGS 

4632
03:01:03,563 --> 03:01:04,063
LIKE NOT ATTEMPTING TO 

4633
03:01:04,063 --> 03:01:04,731
REIDENTIFY IN THE DATA SET, NOT 

4634
03:01:04,731 --> 03:01:06,032
SHARING WITH UNAUTHORIZED 

4635
03:01:06,032 --> 03:01:08,334
PERSONS, USING SPECIFIC DATA 

4636
03:01:08,334 --> 03:01:09,936
SECURITY AND OTHER PROVISIONS 

4637
03:01:09,936 --> 03:01:12,472
THAT CAN HELP PROTECT 

4638
03:01:12,472 --> 03:01:15,074
PARTICIPANTS' PRIVACY AND 

4639
03:01:15,074 --> 03:01:15,375
ANONYMITY.

4640
03:01:15,375 --> 03:01:17,877
I THINK LET'S DO SOME WORK IN 

4641
03:01:17,877 --> 03:01:19,779
PROMOTING RESPONSIBLE USE OF 

4642
03:01:19,779 --> 03:01:23,249
DATA MOSTLY BY PROTECTING 

4643
03:01:23,249 --> 03:01:24,884
CONTRIBUTORS' PRIVACY.

4644
03:01:24,884 --> 03:01:26,986
LAST SLIDE, IN SUMMARY, 

4645
03:01:26,986 --> 03:01:32,459
RESPONSIBLE USE OF DATA BRINGS 

4646
03:01:32,459 --> 03:01:36,796
ABOUT SOCIALLY OUTCOMES WHILE 

4647
03:01:36,796 --> 03:01:40,900
USING DATA OF PEOPLE IN OUR 

4648
03:01:40,900 --> 03:01:41,167
RESEARCH.

4649
03:01:41,167 --> 03:01:45,905
THANK YOU.

4650
03:01:45,905 --> 03:01:46,706
>> DR. VIVIAN OTA WANG HAS

4651
03:01:46,706 --> 03:01:50,343
EXPERIENCES THAT SPAN 

4652
03:01:50,343 --> 03:01:52,479
BIOMEDICAL, PSYCHOLOGICAL, NANO 

4653
03:01:52,479 --> 03:01:52,979
SCALE.

4654
03:01:52,979 --> 03:01:56,549
HER EXPERTISE IS CONGENITAL, 

4655
03:01:56,549 --> 03:01:57,684
TRAUMATIC BRAIN INJURY AND 

4656
03:01:57,684 --> 03:01:58,017
BEREAVEMENT.

4657
03:01:58,017 --> 03:02:01,020
SHE APPLIES HER EXPERTISE AT THE

4658
03:02:01,020 --> 03:02:03,823
ACTING DIRECTOR OF THE OFFICE OF

4659
03:02:03,823 --> 03:02:06,326
STRATEGIC COORDINATION.

4660
03:02:06,326 --> 03:02:11,164
PROVELY A LEAD AT THE NIH OFFICE

4661
03:02:11,164 --> 03:02:14,534
OF DATA SCIENCE STRATEGY, 

4662
03:02:14,534 --> 03:02:16,202
OVERSEEING A REPOSITORY.

4663
03:02:16,202 --> 03:02:18,037
HER ACCOMPLISHMENTS ARE 

4664
03:02:18,037 --> 03:02:18,838
RECOGNIZED BY UNIVERSITY, 

4665
03:02:18,838 --> 03:02:20,039
PROFESSIONAL AND GOVERNMENT 

4666
03:02:20,039 --> 03:02:20,406
AWARS.

4667
03:02:20,406 --> 03:02:21,841
SHE IS AN AMERICAN MEDICAL 

4668
03:02:21,841 --> 03:02:22,942
ASSOCIATION FELLOW, A DIPLOMAT 

4669
03:02:22,942 --> 03:02:24,577
OF THE AMERICAN PSYCHOLOGICAL 

4670
03:02:24,577 --> 03:02:25,545
ASSOCIATION, THE AMERICAN BOARD 

4671
03:02:25,545 --> 03:02:27,714
OF MEDICAL GENETICS AND THE 

4672
03:02:27,714 --> 03:02:30,683
AMERICAN BOARD OF GENETIC 

4673
03:02:30,683 --> 03:02:32,886
COUNSELING AS WELL AS A LICENSED

4674
03:02:32,886 --> 03:02:33,253
PSYCHOLOGIST.

4675
03:02:33,253 --> 03:02:35,421
WELCOME DOCTOR OTA WANG.

4676
03:02:35,421 --> 03:02:38,658
>> THANK YOU SO MUCH.

4677
03:02:38,658 --> 03:02:40,527
GIVEN THE AMOUNT OF TIME, I HAD 

4678
03:02:40,527 --> 03:02:42,929
THIS GREAT LIST OF QUESTIONS, 

4679
03:02:42,929 --> 03:02:44,931
BUT I'M JUST GOING TO DO ONE BIG

4680
03:02:44,931 --> 03:02:45,865
ZINGER FOR ALL OF YOU.

4681
03:02:45,865 --> 03:02:47,967
FIRST OF ALL, I JUST HAVE TO SAY

4682
03:02:47,967 --> 03:02:48,434
THANK YOU.

4683
03:02:48,434 --> 03:02:52,272
WHAT AN EXCITING AFTERNOON TO 

4684
03:02:52,272 --> 03:02:54,374
REALLY HEAR ABOUT THE NICE 

4685
03:02:54,374 --> 03:02:55,341
LANDSCAPE OF DATA AND DATA 

4686
03:02:55,341 --> 03:02:57,277
SCIENCE AND WHAT IT REALLY MEANS

4687
03:02:57,277 --> 03:03:01,514
FOR THE HEALTH OF ALL WOMEN.

4688
03:03:01,514 --> 03:03:04,651
I HAVE THE PRIVILEGE OF BEING 

4689
03:03:04,651 --> 03:03:07,053
ABLE TO MODERATE THIS PANEL WHO 

4690
03:03:07,053 --> 03:03:10,189
HAVE ELOQUENTLY SHOWN HOW DATA, 

4691
03:03:10,189 --> 03:03:11,791
DATA SCIENCE AND HOW CONTEXT 

4692
03:03:11,791 --> 03:03:12,725
TRULY MATTERS.

4693
03:03:12,725 --> 03:03:23,269
SO WHAT WE HEARD IS WE HEARD DR.

4694
03:03:25,738 --> 03:03:26,306
HILL TALK ABOUT THE IMPORTANCE 

4695
03:03:26,306 --> 03:03:26,906
OF WORKING WITH VARIOUS DATA 

4696
03:03:26,906 --> 03:03:27,440
SOURCES AND THE ISSUE OF 

4697
03:03:27,440 --> 03:03:27,941
CONFIDENTIAL COMPUTING.

4698
03:03:27,941 --> 03:03:28,641
WE ALSO HEARD FROM -- SORRY, I'M

4699
03:03:28,641 --> 03:03:31,244
GETTING MY NOTES, FROM MELISSA 

4700
03:03:31,244 --> 03:03:33,947
BUFFALO REALLY TALKING ABOUT THE

4701
03:03:33,947 --> 03:03:35,615
CULTURAL CONTEXT MATTER AND HOW 

4702
03:03:35,615 --> 03:03:37,350
WE NEED TO BE SENSITIVE AND 

4703
03:03:37,350 --> 03:03:39,986
RESPONSIVE TO THE PATIENTS AND 

4704
03:03:39,986 --> 03:03:41,020
THE COMMUNITIES WHO GIVE US THE 

4705
03:03:41,020 --> 03:03:42,355
GIFT OF THEMSELVES, WHICH IS 

4706
03:03:42,355 --> 03:03:49,829
THEIR DATA AND THEMSELVES.

4707
03:03:49,829 --> 03:03:51,731
WE HEARD FROM DR. PROSSER, THE 

4708
03:03:51,731 --> 03:03:53,833
IMPORTANCE OF THE VOICE OF 

4709
03:03:53,833 --> 03:03:54,100
PATIENTS.

4710
03:03:54,100 --> 03:03:55,835
AT SOME POINT ALL OF US WILL BE 

4711
03:03:55,835 --> 03:03:57,704
A PATIENT, SO I THINK IT IS TO 

4712
03:03:57,704 --> 03:04:05,612
VALUE THAT PERSPECTIVE IN 

4713
03:04:05,612 --> 03:04:07,080
EQUIVALENT OR BALANCE WITH THE 

4714
03:04:07,080 --> 03:04:08,214
RESEARCHERS AND EXCITING 

4715
03:04:08,214 --> 03:04:08,681
SCIENCE.

4716
03:04:08,681 --> 03:04:10,717
WE HEARD A REALLY WONDERFUL 

4717
03:04:10,717 --> 03:04:12,619
EXAMPLE LOOKING AT THE 

4718
03:04:12,619 --> 03:04:15,989
COMPLEXITY OF THE MICROBIOME AND

4719
03:04:15,989 --> 03:04:17,724
HOW IT CAN INFLUENCE DIFFERENT 

4720
03:04:17,724 --> 03:04:19,425
TIME POINTS IN OUR HEALTH 

4721
03:04:19,425 --> 03:04:19,792
OUTCOMES.

4722
03:04:19,792 --> 03:04:23,162
WE ROUNDED IT OUT WITH HEARING 

4723
03:04:23,162 --> 03:04:24,263
FROM ALEX CARLISLE ABOUT WHAT 

4724
03:04:24,263 --> 03:04:26,032
ARE THE EXCITING TECHNOLOGIES 

4725
03:04:26,032 --> 03:04:28,234
THAT ARE REALLY AT THE FOREFRONT

4726
03:04:28,234 --> 03:04:33,539
THAT REALLY INCLUDE ALL OF THESE

4727
03:04:33,539 --> 03:04:34,674
VOICES AS WELL AS COMMUNITY 

4728
03:04:34,674 --> 03:04:37,010
INPUT TO REALLY MOVE THE DATA 

4729
03:04:37,010 --> 03:04:43,383
SCIENCE FORWARD FOR WOMEN'S 

4730
03:04:43,383 --> 03:04:43,750
HEALTH.

4731
03:04:43,750 --> 03:04:46,185
GIVEN THAT, WE ONLY HAVE EIGHT 

4732
03:04:46,185 --> 03:04:50,523
MINUTES LEFT, I'M GOING TO ASK A

4733
03:04:50,523 --> 03:04:51,357
SOMEWHAT LOADED QUESTION.

4734
03:04:51,357 --> 03:04:53,793
SO WE'VE TALKED A LOT ABOUT 

4735
03:04:53,793 --> 03:04:55,828
STRATEGIES FOR LOOKING AT 

4736
03:04:55,828 --> 03:04:56,896
BALANCING DATA ACCESSIBILITY, 

4737
03:04:56,896 --> 03:05:00,700
DATA GENERATION AND PRIVACY.

4738
03:05:00,700 --> 03:05:02,535
AND WE'VE BEEN HEARING ABOUT THE

4739
03:05:02,535 --> 03:05:04,504
EXCITING THINGS RELATED TO THE 

4740
03:05:04,504 --> 03:05:05,538
SCIENCE AS WELL AS THE 

4741
03:05:05,538 --> 03:05:05,838
TECHNOLOGY.

4742
03:05:05,838 --> 03:05:07,306
WHAT I WOULD LIKE TO HEAR FROM 

4743
03:05:07,306 --> 03:05:11,644
EACH OF THE PANELISTS IS GIVEN 

4744
03:05:11,644 --> 03:05:15,248
ALL OF THAT, WHAT DO YOU SEE AS 

4745
03:05:15,248 --> 03:05:17,583
THE PRIMARY CHALLENGE FACED BY 

4746
03:05:17,583 --> 03:05:20,086
NOT ONLY THE RESEARCHERS, THE 

4747
03:05:20,086 --> 03:05:23,256
PATIENTS, THE COMMUNITIES, WHO 

4748
03:05:23,256 --> 03:05:24,991
ARE CONDUCTING DATA-DRIVEN 

4749
03:05:24,991 --> 03:05:31,097
WOMEN'S HEALTH RESEARCH AND WHAT

4750
03:05:31,097 --> 03:05:32,131
WOULD YOU RECOMMEND HOW 

4751
03:05:32,131 --> 03:05:33,499
INDIVIDUALS OR INSTITUTIONS CAN 

4752
03:05:33,499 --> 03:05:35,635
SUPPORT OVERCOMING THEM.

4753
03:05:35,635 --> 03:05:40,940
I WILL GO IN REVERSE ORDER AND 

4754
03:05:40,940 --> 03:05:42,208
START WITH DR. OSSORIO.

4755
03:05:42,208 --> 03:05:44,243
>> THAT IS A HUGE
QUESTION.

4756
03:05:44,243 --> 03:05:45,378
CAN YOU HEAR ME?

4757
03:05:45,378 --> 03:05:46,546
>> YEP.

4758
03:05:46,546 --> 03:05:48,347
>> THAT'S A HUGE QUESTION.

4759
03:05:48,347 --> 03:05:50,283
I -- SO I ACTUALLY THINK THAT 

4760
03:05:50,283 --> 03:05:55,955
ONE OF THE BIGGEST CHALLENGES IS

4761
03:05:55,955 --> 03:05:58,357
MUCH BETTER INTEGRATING THE 

4762
03:05:58,357 --> 03:06:00,893
VOICES OF PATIENTS AND RESEARCH 

4763
03:06:00,893 --> 03:06:02,195
PARTICIPANTS AND COMMUNITIES 

4764
03:06:02,195 --> 03:06:03,563
INTO ACTUAL GOVERNANCE 

4765
03:06:03,563 --> 03:06:06,966
STRUCTURES FOR DATA.

4766
03:06:06,966 --> 03:06:08,701
RIGHT NOW I THINK THERE AREN'T 

4767
03:06:08,701 --> 03:06:14,073
THAT MANY GOOD EXAMPLES OF 

4768
03:06:14,073 --> 03:06:15,241
WELL-INTEGRATED VOICES OF THE 

4769
03:06:15,241 --> 03:06:17,744
PEOPLE WHO ARE PERHAPS MOST 

4770
03:06:17,744 --> 03:06:19,278
IMPACTED.

4771
03:06:19,278 --> 03:06:22,415
I KNOW THAT THERE ARE IN SOME 

4772
03:06:22,415 --> 03:06:24,083
CASES LEGAL REASONS WHY IT CAN 

4773
03:06:24,083 --> 03:06:25,651
BE HARD FOR INSTANCE AT THE 

4774
03:06:25,651 --> 03:06:27,987
LEVEL OF A DATA REPOSITORY.

4775
03:06:27,987 --> 03:06:31,390
TO BRING IN OUTSIDE VOICES.

4776
03:06:31,390 --> 03:06:34,093
BUT I THINK THERE ARE SOME WAYS 

4777
03:06:34,093 --> 03:06:38,698
AROUND THAT, ESPECIALLY FOR NIH.

4778
03:06:38,698 --> 03:06:39,499
WHETHER, YOU KNOW, IN LARGE 

4779
03:06:39,499 --> 03:06:42,168
FUNDED PROJECTS WE HAVE TO BE 

4780
03:06:42,168 --> 03:06:43,402
SURE THAT WE HAVE COMMUNITY 

4781
03:06:43,402 --> 03:06:48,207
ADVISORY BOARDS, THAT WE HAVE, 

4782
03:06:48,207 --> 03:06:48,975
YOU KNOW, FUNDING FOR THINGS 

4783
03:06:48,975 --> 03:06:51,244
LIKE FOCUS GROUPS AMONG 

4784
03:06:51,244 --> 03:06:52,945
PARTICIPANTS OR PEOPLE FROM 

4785
03:06:52,945 --> 03:06:54,147
THEIR COMMUNITIES.

4786
03:06:54,147 --> 03:06:56,682
OTHER WAYS OF AT LEAST BRINGING 

4787
03:06:56,682 --> 03:06:59,285
IN THOSE VOICES BECAUSE IN MY 

4788
03:06:59,285 --> 03:07:02,421
EXPERIENCE, IT IS ACTUALLY VERY 

4789
03:07:02,421 --> 03:07:04,690
HARD FOR PEOPLE TO CONCEPTUALIZE

4790
03:07:04,690 --> 03:07:08,661
THINGS LIKE SECONDARY DATA USE.

4791
03:07:08,661 --> 03:07:11,030
I THINK THE MODEL IN EVERYBODY'S

4792
03:07:11,030 --> 03:07:13,933
HEAD OF WHAT THEY ARE DOING WHEN

4793
03:07:13,933 --> 03:07:15,067
THEY PARTICIPATE IN RESEARCH HAS

4794
03:07:15,067 --> 03:07:17,436
TO DO WITH A SITUATION WHERE THE

4795
03:07:17,436 --> 03:07:20,106
PARTICIPANT IS IN SOME KIND OF 

4796
03:07:20,106 --> 03:07:21,707
RELATIONSHIP WITH PERSONNEL IN 

4797
03:07:21,707 --> 03:07:25,678
THE RESEARCH PROCESS.

4798
03:07:25,678 --> 03:07:28,147
AND SO EVEN, LIKE, I DO NOT 

4799
03:07:28,147 --> 03:07:29,415
THINK INFORMED CONSENT TAKES 

4800
03:07:29,415 --> 03:07:32,718
CARE OF, YOU KNOW, ALL OF OUR 

4801
03:07:32,718 --> 03:07:36,289
ISSUES AROUND DATA GOVERNANCE OR

4802
03:07:36,289 --> 03:07:38,858
HOW PARTICIPANTS CAN HELP US 

4803
03:07:38,858 --> 03:07:41,360
THINK ABOUT HOW TO DO THAT WELL.

4804
03:07:41,360 --> 03:07:41,594
THANKS.

4805
03:07:41,594 --> 03:07:42,128
>> GREAT.

4806
03:07:42,128 --> 03:07:42,461
THANK YOU.

4807
03:07:42,461 --> 03:07:44,564
A LOT TO THINK ABOUT.

4808
03:07:44,564 --> 03:07:50,570
DR. SHENHAV, WHAT WOULD BE YOUR 

4809
03:07:50,570 --> 03:07:51,671
BIG SUGGESTION FOR US?

4810
03:07:51,671 --> 03:07:54,407
>> I THINK MY PERSPECTIVE
IS HOW

4811
03:07:54,407 --> 03:07:56,742
DO WE BRIDGE THE DISCOVERIES 

4812
03:07:56,742 --> 03:07:58,811
FROM THE SCIENTIFIC POINT OF 

4813
03:07:58,811 --> 03:07:59,011
VIEW.

4814
03:07:59,011 --> 03:08:02,682
HOW DO WE BRIDGE THESE 

4815
03:08:02,682 --> 03:08:04,283
DISCOVERIES FROM DATA SCIENCE 

4816
03:08:04,283 --> 03:08:06,252
PERSPECTIVES, WE CAN GENERATE 

4817
03:08:06,252 --> 03:08:07,820
WITH THESE LARGE RESOURCES TO 

4818
03:08:07,820 --> 03:08:10,656
ACTUAL UNDERLINED BIOLOGY AND 

4819
03:08:10,656 --> 03:08:13,326
ACTIONABLE CLINICAL TRANSLATION.

4820
03:08:13,326 --> 03:08:14,894
I THINK THIS IS WHERE THE FIELD 

4821
03:08:14,894 --> 03:08:15,428
IS AT.

4822
03:08:15,428 --> 03:08:18,598
I THINK IN WOMEN'S HEALTH IS 

4823
03:08:18,598 --> 03:08:21,300
PROBABLY MAYBE A VERY GOOD 

4824
03:08:21,300 --> 03:08:23,769
EXAMPLE THAT WE HAVE A MACHINE 

4825
03:08:23,769 --> 03:08:27,139
LEARNING MODEL AND IMPORTANT 

4826
03:08:27,139 --> 03:08:28,241
FEATURES, BUT THEN WHAT?

4827
03:08:28,241 --> 03:08:30,243
HOW DO WE TAKE IT TO THE NEXT 

4828
03:08:30,243 --> 03:08:30,443
STEP?

4829
03:08:30,443 --> 03:08:32,979
AND HOW DO WE INTEGRATE THESE 

4830
03:08:32,979 --> 03:08:40,253
MODELS INTO A VALIDATION IN 

4831
03:08:40,253 --> 03:08:41,654
EXPERIMENTAL SETTINGS THAT WILL 

4832
03:08:41,654 --> 03:08:42,922
BE MUCH MORE SETTING.

4833
03:08:42,922 --> 03:08:45,124
THEN WE HAVE THIS CASCADE OF 

4834
03:08:45,124 --> 03:08:46,592
GETTING EXPERIMENTAL RESULTS.

4835
03:08:46,592 --> 03:08:48,961
WE ARE FITTING INTO THE 

4836
03:08:48,961 --> 03:08:50,997
COMPUTATIONAL MODEL AND USING 

4837
03:08:50,997 --> 03:08:55,501
HUMAN DATA AND KIND OF AS A 

4838
03:08:55,501 --> 03:08:56,836
PROCESS, AN INTEGRATED PROCESS 

4839
03:08:56,836 --> 03:08:58,671
THAT FEEDS ONE ANOTHER, NOT JUST

4840
03:08:58,671 --> 03:09:00,606
STOPPING AT THE DATA WE HAVE 

4841
03:09:00,606 --> 03:09:03,242
COLLECTED, BUT HOW DO WE 

4842
03:09:03,242 --> 03:09:04,911
GENERATE HYPOTHESIS FROM THIS 

4843
03:09:04,911 --> 03:09:06,312
DATA, GO TO EXPERIMENTS AND GO 

4844
03:09:06,312 --> 03:09:07,947
BACK TO THE DATA?

4845
03:09:07,947 --> 03:09:10,149
THAT WOULD HELP US DRIVE FORWARD

4846
03:09:10,149 --> 03:09:12,218
BIOLOGICAL DISCOVERY AND THEN 

4847
03:09:12,218 --> 03:09:14,153
WHAT WE CAN ACTUALLY DO WITH 

4848
03:09:14,153 --> 03:09:14,520
THAT.

4849
03:09:14,520 --> 03:09:17,223
HOW WE CAN DRIVE CLINICAL 

4850
03:09:17,223 --> 03:09:17,890
IMPLEMENTATION AND TRANSLATION.

4851
03:09:17,890 --> 03:09:18,925
>> THANK YOU SO MUCH.

4852
03:09:18,925 --> 03:09:23,763
IT IS NICE TO HEAR THE 

4853
03:09:23,763 --> 03:09:25,464
INTEGRATION OF THAT PRACTICAL 

4854
03:09:25,464 --> 03:09:27,266
PIECE TO GET TO ALL OF US.

4855
03:09:27,266 --> 03:09:32,438
DR. CARLISLE.

4856
03:09:32,438 --> 03:09:35,908
>> YEAH.

4857
03:09:35,908 --> 03:09:38,611
HEY, SO I THINK CAN YOU HEAR ME 

4858
03:09:38,611 --> 03:09:44,283
OKAY?

4859
03:09:44,283 --> 03:09:44,650
YES.

4860
03:09:44,650 --> 03:09:44,850
OKAY.

4861
03:09:44,850 --> 03:09:48,921
SO I THINK WE ARE AT ANOTHER 

4862
03:09:48,921 --> 03:09:49,789
RENAISSANCE IN DATA.

4863
03:09:49,789 --> 03:09:54,327
SO WE HAD A BIG DATA EXPLOSION A

4864
03:09:54,327 --> 03:09:55,127
DECADE OR TWO AGO.

4865
03:09:55,127 --> 03:09:58,998
NOW WE ARE ON THE CUSP OF SORT 

4866
03:09:58,998 --> 03:10:02,401
OF EXPANDING THE MODALITIES OF 

4867
03:10:02,401 --> 03:10:08,574
DATA, AND LEARNING QUITE FRANKLY

4868
03:10:08,574 --> 03:10:12,511
HOW THESE EXPANDED MODALITIES OF

4869
03:10:12,511 --> 03:10:13,713
DATA EXPAND HEALTH.

4870
03:10:13,713 --> 03:10:15,748
GETTING GOOD STANDARDIZATION AND

4871
03:10:15,748 --> 03:10:19,318
STRUCTURING OF THAT DATA.

4872
03:10:19,318 --> 03:10:20,920
PARTICULARLY AROUND THE 

4873
03:10:20,920 --> 03:10:23,656
QUALITATIVE AND REAL WORLD 

4874
03:10:23,656 --> 03:10:23,923
EVIDENCE.

4875
03:10:23,923 --> 03:10:25,558
ONE OF THE EXAMPLES THAT I'LL 

4876
03:10:25,558 --> 03:10:27,460
USE IS STRESS.

4877
03:10:27,460 --> 03:10:30,196
SO IF YOU RECALL THE SLIDE I 

4878
03:10:30,196 --> 03:10:31,964
SHOWED, ONE OF THE SLIDES I 

4879
03:10:31,964 --> 03:10:34,333
SHOWED AND TALKED ABOUT NUANCE 

4880
03:10:34,333 --> 03:10:36,535
ABOUT CAPTURING REAL WORLD 

4881
03:10:36,535 --> 03:10:37,670
EVIDENCE, THAT IS A PRIME 

4882
03:10:37,670 --> 03:10:40,773
EXAMPLE OF A TYPE OF DATA THAT 

4883
03:10:40,773 --> 03:10:42,375
YOU WOULD CATCH FROM 

4884
03:10:42,375 --> 03:10:43,509
UNDERSTANDING SOMEONE'S LIVED 

4885
03:10:43,509 --> 03:10:44,477
EXPERIENCE.

4886
03:10:44,477 --> 03:10:46,078
BUT HOW DOES THAT HAVE AN IMPACT

4887
03:10:46,078 --> 03:10:50,716
ON BIOLOGY, RIGHT?

4888
03:10:50,716 --> 03:10:54,620
AND SO ANECDOTELY, WE ARE 

4889
03:10:54,620 --> 03:10:57,390
COGNIZANT THERE IS AN IMPACT, 

4890
03:10:57,390 --> 03:10:57,590
RIGHT?

4891
03:10:57,590 --> 03:11:00,559
SOME THINGS THAT HAPPEN FROM 

4892
03:11:00,559 --> 03:11:04,563
BIOCHEMICAL STRUCTURE, ELEVATION

4893
03:11:04,563 --> 03:11:10,069
OF CORTISOL LEVELS AND AROUND 

4894
03:11:10,069 --> 03:11:12,538
STRUCTURES WE ARE EXPOSED TO, 

4895
03:11:12,538 --> 03:11:14,273
GETTING STANDARDIZATION 

4896
03:11:14,273 --> 03:11:15,808
ROBUSTNESS AROUND THAT DATA SO 

4897
03:11:15,808 --> 03:11:17,910
WE CAN GET THAT INTO 

4898
03:11:17,910 --> 03:11:19,011
COMPUTATIONAL MODELS TO 

4899
03:11:19,011 --> 03:11:21,347
UNDERSTAND THEIR IMPACT, RIGHT?

4900
03:11:21,347 --> 03:11:23,015
WE'VE KNOWN FOR QUITE SOME TIME 

4901
03:11:23,015 --> 03:11:24,750
THAT COMMUNITIES THAT ARE 

4902
03:11:24,750 --> 03:11:27,119
EXPOSED TO VARIOUS STRESSES, 

4903
03:11:27,119 --> 03:11:28,254
THOSE THINGS COULD HAVE 

4904
03:11:28,254 --> 03:11:30,890
LONGITUDINAL EFFECTS FROM A 

4905
03:11:30,890 --> 03:11:32,425
GENOMIC PERSPECTIVE.

4906
03:11:32,425 --> 03:11:37,463
THEY ARE ISOLATED IN TERMS OF 

4907
03:11:37,463 --> 03:11:39,799
EPIS THERE GENETIC INHERITANCE, 

4908
03:11:39,799 --> 03:11:40,933
BUT THERE IS ENOUGH 

4909
03:11:40,933 --> 03:11:42,802
ENVIRONMENTAL STRESSORS HAVE AH 

4910
03:11:42,802 --> 03:11:43,903
BIOLOGICAL EFFECT.

4911
03:11:43,903 --> 03:11:46,105
WE GET MORE ROBUST AROUND THOSE 

4912
03:11:46,105 --> 03:11:48,007
TYPES OF DATA MODALITIES, I 

4913
03:11:48,007 --> 03:11:50,609
THINK WE WILL HAVE SOME 

4914
03:11:50,609 --> 03:11:51,610
INNOVATION AROUND OUR DATA 

4915
03:11:51,610 --> 03:11:52,311
MODELS.

4916
03:11:52,311 --> 03:11:52,978
>> GREAT.

4917
03:11:52,978 --> 03:11:54,413
THANK YOU.

4918
03:11:54,413 --> 03:11:55,948
EXCELLENT POINTS I THINK ALL OF 

4919
03:11:55,948 --> 03:11:59,251
US NEED TO KEEP IN MIND AS WE 

4920
03:11:59,251 --> 03:12:02,755
MOVE FORWARD.

4921
03:12:02,755 --> 03:12:07,726
ROCHELLE PROSSER.

4922
03:12:07,726 --> 03:12:14,467
>> MY THOUGHTS ON WHERE WE
ARE 

4923
03:12:14,467 --> 03:12:15,968
GOING WITH DATA AND HOW IT 

4924
03:12:15,968 --> 03:12:16,335
IMPACTS PEOPLE.

4925
03:12:16,335 --> 03:12:18,871
ONE OF THE SLIDES I DIDN'T GET 

4926
03:12:18,871 --> 03:12:23,375
TO TODAY WAS TALKING ABOUT 

4927
03:12:23,375 --> 03:12:25,377
ACCESS TO IMAGES.

4928
03:12:25,377 --> 03:12:27,179
SOMETHING AS SIMPLE AS WE WANT 

4929
03:12:27,179 --> 03:12:31,884
TO KNOW WHAT'S ON THE IMAGE AND 

4930
03:12:31,884 --> 03:12:42,461
HOW THAT IS  ON SHARING THAT DAA

4931
03:13:02,715 --> 03:13:03,249
WHICH IN REPORTING OR SHARING 

4932
03:13:03,249 --> 03:13:03,849
THE SOFTWARE BETWEEN THE TWO 

4933
03:13:03,849 --> 03:13:04,483
DIFFERENT ENTITIES THAT YOU ARE 

4934
03:13:04,483 --> 03:13:04,817
TRAVELING TO.

4935
03:13:04,817 --> 03:13:07,386
AND THAT ENDS UP BECOMING AN 

4936
03:13:07,386 --> 03:13:10,356
ACTUAL ISSUE IN SURVIVESHIP AND 

4937
03:13:10,356 --> 03:13:10,789
OUTCOMES.

4938
03:13:10,789 --> 03:13:12,458
IN CHILDREN THEY HAVE MORE 

4939
03:13:12,458 --> 03:13:14,994
RADIATION AND MORE EXPOSURE 

4940
03:13:14,994 --> 03:13:16,996
BECAUSE WE HAVE TO REDO THE 

4941
03:13:16,996 --> 03:13:18,697
IMAGE AS THE NURSE OR HEALTH 

4942
03:13:18,697 --> 03:13:22,368
CARE PROFESSIONAL IS CHASING THE

4943
03:13:22,368 --> 03:13:24,904
AMBULANCE DOWN THE STREET WITH A

4944
03:13:24,904 --> 03:13:26,438
CD BECAUSE THE DATA IS NOT ABLE 

4945
03:13:26,438 --> 03:13:27,806
TO BE SHARED.

4946
03:13:27,806 --> 03:13:29,575
SO WHERE I SEE WHERE WE ARE 

4947
03:13:29,575 --> 03:13:37,349
GOING IS THAT WE HAVE TO BE 

4948
03:13:37,349 --> 03:13:38,384
INTENTIONAL.

4949
03:13:38,384 --> 03:13:40,119
THE LEGALITIES OF SHARING DATA 

4950
03:13:40,119 --> 03:13:41,954
AND ONCE YOU HAVE GIVEN THAT 

4951
03:13:41,954 --> 03:13:44,490
PERMISSION, YOU CAN RESCIND, BUT

4952
03:13:44,490 --> 03:13:50,162
DO YOU REMEMBER YOU ACTUALLY 

4953
03:13:50,162 --> 03:13:50,629
HAVE GIVEN IT AND THE 

4954
03:13:50,629 --> 03:13:51,130
IMPLICATION OF ITS USE 

4955
03:13:51,130 --> 03:13:51,430
AFTERWARDS.

4956
03:13:51,430 --> 03:13:52,097
WHERE IT IS IMPACTING CARE AND 

4957
03:13:52,097 --> 03:13:53,933
IMPACTING MEDICAL DECISIONS, WE 

4958
03:13:53,933 --> 03:13:55,901
NEED TO BE MORE OPEN AND BE 

4959
03:13:55,901 --> 03:13:58,504
WILLING TO DO SO FOR PATIENT 

4960
03:13:58,504 --> 03:14:02,374
OUTCOMES AND QUALITY.

4961
03:14:02,374 --> 03:14:04,043
>> GREAT.

4962
03:14:04,043 --> 03:14:05,110
THANK YOU.

4963
03:14:05,110 --> 03:14:05,644
THANK YOU VERY MUCH.

4964
03:14:05,644 --> 03:14:06,812
IS MELISSA BEAUTIFUL, ARE YOU 

4965
03:14:06,812 --> 03:14:10,182
STILL AVAILABLE?

4966
03:14:10,182 --> 03:14:11,784
>> THEY HAD A TORNADO
WARNING 

4967
03:14:11,784 --> 03:14:14,119
AND THEY ARE IN THE BASEMENT.

4968
03:14:14,119 --> 03:14:14,987
AND HOPEFULLY SAFE.

4969
03:14:14,987 --> 03:14:16,155
>> SAFETY IS FIRST.

4970
03:14:16,155 --> 03:14:16,956
I GET THAT.

4971
03:14:16,956 --> 03:14:18,691
THE OTHER PERSON WHO IS NOT PART

4972
03:14:18,691 --> 03:14:20,826
OF IT, I WOULD LOVE TO HEAR IS 

4973
03:14:20,826 --> 03:14:22,094
DR. HILL, IF SHE IS STILL 

4974
03:14:22,094 --> 03:14:25,664
AVAILABLE.

4975
03:14:25,664 --> 03:14:26,899
MAYBE I'M ASKING TOO MUCH.

4976
03:14:26,899 --> 03:14:28,968
>> SHE IS NO LONGER ON THE

4977
03:14:28,968 --> 03:14:29,201
MEETING.

4978
03:14:29,201 --> 03:14:30,002
>> OKAY.

4979
03:14:30,002 --> 03:14:34,073
ANYWAY, I JUST WANTED TO SAY 

4980
03:14:34,073 --> 03:14:34,673
THAT THANK YOU VERY MUCH.

4981
03:14:34,673 --> 03:14:37,643
ALL OF YOUR PERSPECTIVES 

4982
03:14:37,643 --> 03:14:38,944
INCLUDING MELISSA'S TALKING 

4983
03:14:38,944 --> 03:14:40,212
ABOUT THE IMPORTANCE OF 

4984
03:14:40,212 --> 03:14:42,314
DIFFERENT WAYS OF GOVERNANCE 

4985
03:14:42,314 --> 03:14:44,917
INCLUDING BEING RESPONSIVE TO 

4986
03:14:44,917 --> 03:14:46,619
TRIBAL SOVEREIGNTY AND DATA 

4987
03:14:46,619 --> 03:14:48,087
SOVEREIGNTY ISSUES IS SOMETHING 

4988
03:14:48,087 --> 03:14:49,755
YOU ALL NEED -- EVERYONE NEEDS 

4989
03:14:49,755 --> 03:14:51,223
TO KEEP IN MIND AS WE MOVE 

4990
03:14:51,223 --> 03:14:52,258
FORWARD.

4991
03:14:52,258 --> 03:14:53,292
TRYING TO MAKE SENSE AND DOING 

4992
03:14:53,292 --> 03:14:55,060
RIGHT BY THE DATA AND THE GIFTS 

4993
03:14:55,060 --> 03:14:57,296
THAT PEOPLE HAVE GIVEN US TO 

4994
03:14:57,296 --> 03:14:59,064
MOVE FORWARD IN UNDERSTANDING.

4995
03:14:59,064 --> 03:15:02,268
RESEARCH AND WOMEN'S HEALTH.

4996
03:15:02,268 --> 03:15:02,901
SO THANK YOU VERY MUCH FOR 

4997
03:15:02,901 --> 03:15:04,370
JOINING US TODAY.

4998
03:15:04,370 --> 03:15:12,177
I'M GOING TO TURN IT OVER TO DR.

4999
03:15:12,177 --> 03:15:12,378
BARR.

5000
03:15:12,378 --> 03:15:13,279
>> THANK YOU.

5001
03:15:13,279 --> 03:15:20,786
I WILL PASS IT ALONG TO DR. 

5002
03:15:20,786 --> 03:15:22,454
CLAYTON WHO WILL INTRODUCE OUR 

5003
03:15:22,454 --> 03:15:32,931
CLOSING SPEAKER, DR. VIVIAN 

5004
03:15:33,365 --> 03:15:33,499
PINN.

5005
03:15:33,499 --> 03:15:34,033
OVER TO YOU, DR. CLAYTON.

5006
03:15:34,333 --> 03:15:34,833
>>> WELL, GOOD
AFTERNOON, 

5007
03:15:34,833 --> 03:15:35,100
EVERYONE.

5008
03:15:35,100 --> 03:15:36,669
I HOPE YOU HAVE ENJOYED THIS 

5009
03:15:36,669 --> 03:15:38,604
SESSION AS MUCH AS I HAVE.

5010
03:15:38,604 --> 03:15:43,242
AND I HAVE A DISTINCT PLEASURE 

5011
03:15:43,242 --> 03:15:46,378
OF INTRODUCING DR. VIVIAN W. 

5012
03:15:46,378 --> 03:15:47,346
PINN, THE FIRST FULL TIME 

5013
03:15:47,346 --> 03:15:49,481
DIRECTOR OF THE OFFICE OF 

5014
03:15:49,481 --> 03:15:51,250
RESEARCH OF WOMEN'S HEALTH, A 

5015
03:15:51,250 --> 03:15:53,986
MENTOR AND NOW I CAN SAY A 

5016
03:15:53,986 --> 03:15:54,253
FRIEND.

5017
03:15:54,253 --> 03:15:58,190
DR. PINN HAS AN INCREDIBLE TRACK

5018
03:15:58,190 --> 03:16:00,759
RECORD OF BEING A TRAIL BLAZER 

5019
03:16:00,759 --> 03:16:01,927
AND PIONEER IN ALMOST EVERYTHING

5020
03:16:01,927 --> 03:16:03,896
SHE HAS DONE.

5021
03:16:03,896 --> 03:16:05,831
SHE DOESN'T LIKE IT WHEN WE GIVE

5022
03:16:05,831 --> 03:16:07,199
LONG INTRODUCTIONS SO OUT OF 

5023
03:16:07,199 --> 03:16:08,801
RESPECT FOR HER, I'M GOING TO 

5024
03:16:08,801 --> 03:16:10,569
HIGHLIGHT SOME OF HER FIRSTS.

5025
03:16:10,569 --> 03:16:12,471
SHE HAS BEEN A TRAIL BLAZER IN 

5026
03:16:12,471 --> 03:16:16,375
LOTS OF PLACES SHE HAS BEEN, 

5027
03:16:16,375 --> 03:16:17,643
UNIVERSITY OF VIRGINIA MEDICAL 

5028
03:16:17,643 --> 03:16:19,378
SCHOOL OR CHAIR DEPARTMENT OF 

5029
03:16:19,378 --> 03:16:19,645
PATHOLOGY.

5030
03:16:19,645 --> 03:16:21,647
I THINK THAT JUST SAYS LITERALLY

5031
03:16:21,647 --> 03:16:23,615
WHAT A TRAIL BLAZER IS.

5032
03:16:23,615 --> 03:16:27,252
IF YOU THINK ABOUT THAT, THAT IS

5033
03:16:27,252 --> 03:16:28,520
THE PERSON GOING ON THE TRAIL 

5034
03:16:28,520 --> 03:16:33,892
FOR THE FIRST TIME AND CUTTING 

5035
03:16:33,892 --> 03:16:35,227
BAKE WHAT BARRIERS THERE ARE.

5036
03:16:35,227 --> 03:16:37,329
THAT PERSON GETS THE MOST 

5037
03:16:37,329 --> 03:16:38,864
RESISTANCE OR LET'S SAY A LARGE 

5038
03:16:38,864 --> 03:16:41,700
AMOUNT OF RESISTANCE.

5039
03:16:41,700 --> 03:16:44,603
ONE THING I ADMIRE ABOUT DR. 

5040
03:16:44,603 --> 03:16:49,375
PINN IS HER PERSISTENCE, 

5041
03:16:49,375 --> 03:16:51,243
REQUIRING EXCELLENCE, HER 

5042
03:16:51,243 --> 03:16:53,979
RESILIENCE, HER LEADERSHIP, HER 

5043
03:16:53,979 --> 03:16:56,682
INDEPENDENT THINKING.

5044
03:16:56,682 --> 03:16:59,818
SHE IS JUST AN AMAZING, AMAZING 

5045
03:16:59,818 --> 03:17:04,056
WOMG  -- WOMAN AND LEADER.

5046
03:17:04,056 --> 03:17:05,891
WE ARE JUST ASKING YOU TO SAY 

5047
03:17:05,891 --> 03:17:07,159
ONE OR TWO WORDS.

5048
03:17:07,159 --> 03:17:08,927
WE JUST WANT TO HEAR A LITTLE 

5049
03:17:08,927 --> 03:17:11,730
BIT FROM YOU TODAY AS WE MOVE 

5050
03:17:11,730 --> 03:17:13,632
TOWARDS THE END OF OUR PROGRAM.

5051
03:17:13,632 --> 03:17:15,634
ARE YOU ENABLE TO UNMUTE AND GET

5052
03:17:15,634 --> 03:17:16,802
ON CAMERA FOR US?

5053
03:17:16,802 --> 03:17:26,445
>> I THINK I'M UNMUTE.

5054
03:17:26,445 --> 03:17:28,080
THANK YOU DR. CLAYTON FOR THOSE 

5055
03:17:28,080 --> 03:17:28,447
WORDS.

5056
03:17:28,447 --> 03:17:30,382
I WILL PAY YOU LATER.

5057
03:17:30,382 --> 03:17:40,793
I HAVE TO COMPLIMENT YOU ON 

5058
03:17:40,793 --> 03:17:41,326
PUTTING ON THIS FOUR-OUR 

5059
03:17:41,326 --> 03:17:41,927
SYMPOSIUM SO PACKED FULL OF 

5060
03:17:41,927 --> 03:17:42,227
INFORMATION.

5061
03:17:42,227 --> 03:17:42,828
EVERY SPEAKER HAD A DIFFERENT 

5062
03:17:42,828 --> 03:17:43,429
ASPECT ADDRESSING OUR TOPIC, 

5063
03:17:43,429 --> 03:17:44,096
DATA-DRIVEN INNOVATION FOR THE 

5064
03:17:44,096 --> 03:17:44,496
HEALTH OF WOMEN.

5065
03:17:44,496 --> 03:17:45,764
I WAS TAKING NOTES LEFT AND 

5066
03:17:45,764 --> 03:17:48,033
RIGHT AND WHAT I WAS THINKING IS

5067
03:17:48,033 --> 03:17:49,935
HOW IMPORTANT THIS IS AS YOU 

5068
03:17:49,935 --> 03:17:51,937
APPROACH THE 30th YEAR OF THE 

5069
03:17:51,937 --> 03:17:53,372
OFFICE WHICH IN ITSELF IS 

5070
03:17:53,372 --> 03:17:54,006
SIGNIFICANT.

5071
03:17:54,006 --> 03:17:55,374
YOU SURVIVED FOR 30 YEARS.

5072
03:17:55,374 --> 03:17:57,409
WE ARE STILL GOING STRONG AND 

5073
03:17:57,409 --> 03:17:58,744
YOU'VE STILL GOT STRONG SUPPORT.

5074
03:17:58,744 --> 03:18:02,915
I WAS THINKING BACK TO WHEN THE 

5075
03:18:02,915 --> 03:18:06,118
OFFICE WAS FIRST ESTABLISHED AND

5076
03:18:06,118 --> 03:18:09,354
SO MUCH CRITICISM WE DON'T NEED 

5077
03:18:09,354 --> 03:18:11,857
AN OFFICE ON RESEARCH ON WOMEN'S

5078
03:18:11,857 --> 03:18:12,357
HEALTH.

5079
03:18:12,357 --> 03:18:13,725
OUR RESPONSE WAS WE WEREN'T IN 

5080
03:18:13,725 --> 03:18:15,928
THIS TO BE POLITICALLY CORRECT 

5081
03:18:15,928 --> 03:18:17,996
OR USING THE TERM THEY USE THESE

5082
03:18:17,996 --> 03:18:20,833
DAYS WHICH I DON'T LIKE TO USE, 

5083
03:18:20,833 --> 03:18:22,201
BUT EVERYTHING WE WOULD DO IN 

5084
03:18:22,201 --> 03:18:25,003
THIS OFFICE, EVERYTHING WE WOULD

5085
03:18:25,003 --> 03:18:26,472
FUND, EVERY RESEARCH GRANT WE 

5086
03:18:26,472 --> 03:18:27,806
SPONSOR WOULD BE DRIVEN BY 

5087
03:18:27,806 --> 03:18:28,073
SCIENCE.

5088
03:18:28,073 --> 03:18:32,544
THEY WOULD BE SCIENCE-DRIVEN 

5089
03:18:32,544 --> 03:18:32,845
INITIATIVES.

5090
03:18:32,845 --> 03:18:34,446
WITH THE DISCUSSION TODAY 

5091
03:18:34,446 --> 03:18:37,082
LOOKING AT DATA-DRIVEN 

5092
03:18:37,082 --> 03:18:38,116
INNOVATION, THAT IS WHAT YOU 

5093
03:18:38,116 --> 03:18:40,986
WERE ADDRESSING, SCIENCE-DRIVEN 

5094
03:18:40,986 --> 03:18:42,287
INITIATIVES AND THE DATA 

5095
03:18:42,287 --> 03:18:44,122
PROVIDES THE SCIENTIFIC 

5096
03:18:44,122 --> 03:18:45,524
BACKGROUND FOR MOVING THIS WHOLE

5097
03:18:45,524 --> 03:18:46,191
FIELD FORWARD.

5098
03:18:46,191 --> 03:18:48,894
I WOULD LOVE TO REITERATE WHAT 

5099
03:18:48,894 --> 03:18:51,196
EACH OF YOUR SPEAKERS SAY.

5100
03:18:51,196 --> 03:18:53,599
I THANK DR. OTA WANG SUMMARIZED 

5101
03:18:53,599 --> 03:18:55,601
NICELY WHAT EACH OF THE SPEAKERS

5102
03:18:55,601 --> 03:18:56,802
PRESENTED AND I WON'T GO THROUGH

5103
03:18:56,802 --> 03:18:57,736
THAT AGAIN.

5104
03:18:57,736 --> 03:19:00,072
BUT I JUST WAS REALLY STRUCK BY 

5105
03:19:00,072 --> 03:19:02,207
EVERYTHING FROM LOOKING AT THE 

5106
03:19:02,207 --> 03:19:05,811
PRIVACY ASPECTS, THE ETHICAL 

5107
03:19:05,811 --> 03:19:07,312
ASPECTS, THE CULTURAL ASPECTS, 

5108
03:19:07,312 --> 03:19:09,314
THE SCIENTIFIC ASPECTS AND MOST 

5109
03:19:09,314 --> 03:19:11,250
OF ALL KNOWING AS WE ENCOURAGE 

5110
03:19:11,250 --> 03:19:13,352
WOMEN TO BE PART OF CLINICAL 

5111
03:19:13,352 --> 03:19:14,920
TRIALS, WOMEN AND MEN TO BE PART

5112
03:19:14,920 --> 03:19:17,990
OF CLINICAL TRIALS, ACTUALLY, TO

5113
03:19:17,990 --> 03:19:22,861
POINT OUT THE IMPORTANCE OF NOT 

5114
03:19:22,861 --> 03:19:27,099
ONLY INCLUDING THEM IN THE 

5115
03:19:27,099 --> 03:19:28,567
DESIGN OF RESEARCH BY MAKING 

5116
03:19:28,567 --> 03:19:30,135
SURE WE SHARE THAT INFORMATION 

5117
03:19:30,135 --> 03:19:31,169
DERIVED FROM THE STUDY BACK TO 

5118
03:19:31,169 --> 03:19:33,071
THE COMMUNITY INVOLVED IN THE 

5119
03:19:33,071 --> 03:19:33,272
STUDY.

5120
03:19:33,272 --> 03:19:37,276
I THINK EACH OF YOUR SPEAKERS 

5121
03:19:37,276 --> 03:19:38,977
STRESSED THAT TO SOME DEGREE.

5122
03:19:38,977 --> 03:19:40,212
I'M GRATEFUL.

5123
03:19:40,212 --> 03:19:41,113
THANK YOU FOR HAVING THE 

5124
03:19:41,113 --> 03:19:42,047
SYMPOSIUM IN MY NAME.

5125
03:19:42,047 --> 03:19:43,849
IT IS REALLY FLATTERING.

5126
03:19:43,849 --> 03:19:45,684
I WOULD LIKE TO CONGRATULATE ALL

5127
03:19:45,684 --> 03:19:47,653
OF YOUR SPEAKERS AS WELL AS FROM

5128
03:19:47,653 --> 03:19:48,754
THE OFFICE STAFF WHO PRESENTED 

5129
03:19:48,754 --> 03:19:50,289
ABOUT THE PROGRAMS AND 

5130
03:19:50,289 --> 03:19:51,156
INNOVATIONS THERE.

5131
03:19:51,156 --> 03:19:52,691
AND JUST SAY WELL DONE.

5132
03:19:52,691 --> 03:19:54,726
I'M SO PROUD OF WHAT YOU'VE DONE

5133
03:19:54,726 --> 03:19:58,130
AND HOW YOU ARE CARING FOR THE 

5134
03:19:58,130 --> 03:19:59,798
SCIENCE OF WOMEN'S HEALTH AND 

5135
03:19:59,798 --> 03:20:01,733
RECOGNIZING THE IMPORTANT OF 

5136
03:20:01,733 --> 03:20:04,236
DATA-DRIVEN INNOVATION AND YOUR 

5137
03:20:04,236 --> 03:20:06,071
SPEAKERS DID A BEAUTIFUL JOB OF 

5138
03:20:06,071 --> 03:20:07,239
PRESENTING THAT TODAY.

5139
03:20:07,239 --> 03:20:08,807
THANK YOU.

5140
03:20:08,807 --> 03:20:13,211
AND THANK YOU FOR ALL OF YOU FOR

5141
03:20:13,211 --> 03:20:14,346
BEING INTERESTED IN WOMEN'S 

5142
03:20:14,346 --> 03:20:15,948
HEALTH AND SUPPORTS DR. CLAYTON 

5143
03:20:15,948 --> 03:20:17,816
AND THE STAFF AND THE OFFICE TO 

5144
03:20:17,816 --> 03:20:19,251
KEEP THIS OFFICE GOING STRONG, 

5145
03:20:19,251 --> 03:20:20,586
NOT JUST FOR THE 30th 

5146
03:20:20,586 --> 03:20:22,654
ANNIVERSARY, BUT LOOKING FOR THE

5147
03:20:22,654 --> 03:20:24,156
40th AND 50th ANNIVERSARY.

5148
03:20:24,156 --> 03:20:25,724
THANK YOU, DR. CLAYTON.

5149
03:20:25,724 --> 03:20:28,060
>> THANK YOU, DR. PINN.

5150
03:20:28,060 --> 03:20:29,494
WE ARE JUST SO DELIGHTED TO HAVE

5151
03:20:29,494 --> 03:20:30,462
YOU WITH US.

5152
03:20:30,462 --> 03:20:32,497
IT IS OUR PRIVILEGE TO CONTINUE 

5153
03:20:32,497 --> 03:20:36,969
THE WORK THAT YOU STARTED FOR 

5154
03:20:36,969 --> 03:20:39,738
THE BENEFIT OF ALL WOMEN IN THE 

5155
03:20:39,738 --> 03:20:41,239
U.S. AND BEYOND.

5156
03:20:41,239 --> 03:20:43,241
WE WILL CONTINUE PUTTING SCIENCE

5157
03:20:43,241 --> 03:20:45,010
TO WORK FOR THE HEALTH OF WOMEN.

5158
03:20:45,010 --> 03:20:47,479
I WANT TO ADD MY THANKS TO DR. 

5159
03:20:47,479 --> 03:20:48,880
ELIZABETH BARR WHO HAS BEEN THE 

5160
03:20:48,880 --> 03:20:51,383
LEAD FOR THIS EFFORT THIS YEAR.

5161
03:20:51,383 --> 03:20:53,151
AND HER TEAM AND EVERYONE BEHIND

5162
03:20:53,151 --> 03:20:54,586
THE SCENES THAT MADE THIS WORK 

5163
03:20:54,586 --> 03:20:58,123
TODAY AND WITH THAT, ALL OF OUR 

5164
03:20:58,123 --> 03:21:00,993
SPEAKERS, EVERYONE HERE 

5165
03:21:00,993 --> 03:21:03,061
GATHERED, OUR ATTENDEES, THE 

5166
03:21:03,061 --> 03:21:05,364
FOLKS AT NIH, I'M GOING TO GIVE 

5167
03:21:05,364 --> 03:21:07,332
THE LAST WORD TO THE LEAD DR. 

5168
03:21:07,332 --> 03:21:08,200
ELIZABETH BARR.

5169
03:21:08,200 --> 03:21:10,135
>> THANK YOU, DR. CLAYTON
AND 

5170
03:21:10,135 --> 03:21:12,471
THANK YOU DR. PINN.

5171
03:21:12,471 --> 03:21:15,007
WE HAVE BEEN DELIGHTED TO HEAR 

5172
03:21:15,007 --> 03:21:16,308
SUCH EXCITING SCIENCE TODAY AND 

5173
03:21:16,308 --> 03:21:18,910
TO REITERATE THERE HAVE BEEN 

5174
03:21:18,910 --> 03:21:20,646
DOZENS AND DOZENS OF PEOPLE 

5175
03:21:20,646 --> 03:21:22,447
WORKING BEHIND THE SCENES TO 

5176
03:21:22,447 --> 03:21:24,850
BRING THIS EVENT INTO FRUITION 

5177
03:21:24,850 --> 03:21:26,151
AND WE'VE BEEN INCREDIBLY 

5178
03:21:26,151 --> 03:21:28,820
GRATEFUL TO THEIR PERSISTENCE 

5179
03:21:28,820 --> 03:21:30,422
AND PERSEVERANCE AND WITH THAT, 

5180
03:21:30,422 --> 03:21:32,991
TODAY'S MEETING IS ADJOURNED.

5181
03:21:32,991 --> 03:21:34,459
THANK YOU ALL VERY MUCH.

5182
03:21:34,459 --> 03:21:40,265
>> THANK YOU.