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>> SO GOOD AFTERNOON,
EVERYONE.

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WELCOME TO OUR AUGUST HERO 

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LECTURE OR HEALTH EQUITY 

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RESEARCH OUTREACH LECTURE ON 

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ADVANCING LEATH EQUITY THROUGH 

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COMMUNITY-ENGAGED RESEARCH.

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LIKE OUR APRIL LECTURE, THIS IS 

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ALSO A PART OF OUR CENTER FOR 

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TRANSLATION RESEARCH AND 

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IMPLEMENTATION SCIENCES 10th 

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ANNIVERSARY CELEBRATION AND 

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ALIGNS WITH ANOTHER KEY PILLAR 

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OF THE CTRIS MISSION 

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COMMUNITY-ENGAGED RESEARCH.

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SO FOR ALL OF YOU NOT EXTREMELY 

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FAMILIAR WITH THE HERO SERIES AS

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WE LIKE TO CALL IT IT'S FOUNDED 

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FOR THE CENTER CTRIS IN LINE 

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WITH THE NHLBI STRATEGIC VISION 

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TO ADDRESS HEALTH DISPARITIES 

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AND ESTABLISHED TO HIGHLIGHT THE

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GLOBAL AND DOMESTIC HEALTH 

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EQUITY RESEARCH ACROSS THE NIH 

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AND OTHER FEDERAL AGENCIES AND 

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PARTNERS WITH THE GOAL OF 

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PROMOTING OPPORTUNITIES TO 

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COLLABORATE AND ADVANCE HEALTH 

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EQUITY.

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SO I MENTIONED EARLIER THE KEY 

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PILLARS THAT DEFINE CTRIS' 

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MISSION.

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IT HIGHLIGHTS RESEARCH THAT 

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SEEKS TO ADDRESS INEQUITIES IN 

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HEALTH A KEY PILLAR.

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WHAT WE'RE DOING AS PART OF OUR 

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10th ANNIVERSARY HERO SERIES IS 

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IS TO LEEK AT HEALTH INEQUITIES 

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FROM THE GLOBAL PERSPECTIVE AND 

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THE FIRST PILLAR WE DID IN OUR 

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APRIL LECTURE AND LOOKING AT IT 

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THROUGH THE LENS OF 

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IMPLEMENTATION AND 

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COMMUNITY-ENGAGED RESEARCH THE 

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FOCUS OF OUR DISCUSSION TODAY.

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AS SEEN HERE, TRAINING AND 

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CAPACITY BUILDING IS A THEME 

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THAT CROSS CUTS ALL THE WORK WE 

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DO AT CTRIS.

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SO THIS SLIDE HIGHLIGHTS SOME 

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KEY PROGRAMS THAT SHOWCASE THE 

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PILLARS OF CTRIS' MISSION 

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INCLUDING PROGRAMS LIKE DECIPHER

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THROUGH COORDINATED INTERVENTION

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TO PREVENT AND CONTROL HEART AND

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LUNG DISEASE RISK AS WELL AS THE

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NIH COMMUNITY ENGAGEMENT ALIGNS 

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OR SELE.

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WE START THE SERIES IN 2022 AND 

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HAD THE HONOR OF HOSTING AMAZING

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SPEAKERS FROM MANY SEMINARS ON 

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LECTURES.

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IN FACT, THE SPEAKERS HAVE 

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TOUCHED ON HEALTH EQUITY 

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RESEARCH IN THE CONTEXT OF 

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TOPICS LIKE CLIMATE HEALTH 

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WOMEN'S HEALTH ACROSS THE LIFE 

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SPAN TO SICKLE CELL DISEASE AND 

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BUILDING TRUST VIA HEALTH 

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COMMUNICATION AND DISSEMINATION.

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TODAY'S HERO LECTURE WILL DELVE 

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INTO ADVANCING HEALTH EQUITY 

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THROUGH COMMUNITY ENGAGED 

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RESEARCH BY SHOWCASING LESSONS 

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LEARNED AND BEST PRACTICES FROM 

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THE PROSPECTIVE OF PROGRAMS SUCH

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AS THE PATIENT-CENTERED OUTCOME 

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INSTITUTE AND THE CEACR AND HAVE

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UPDATES SOON TO BE RELEASED 

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PRINCIPLES OF COMMUNITY 

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ENGAGEMENT.

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QUICK HOUSEKEEPING WE REQUEST IF

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YOU'RE NOT SPEAKING, PLEASE MUTE

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YOURSELF AND SPEAKERS CAN STAY 

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ON CAMERA BUT ONLY THE KEY 

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PANELISTS AND SPEAKERS ARE 

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REQUESTED TO KEEP THEIR VIDEOS 

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ON FOR BANDWIDTH.

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WE'RE RECORDING THIS AND IT'S 

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GOING TO BE VIDEOCAST.

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THE RECORDING WILL BE AVAILABLE 

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TO BE VIEWED LATER AND SHARED AT

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LARGE.

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AND FOR ANY TECHNICAL ISSUES, 

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PLEASE GO AHEAD AND POST THEM IN

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THE CHAT AND QUESTIONS AS THEY 

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COME UP.

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WITH THAT I'D LIKE TO HAND IT TO

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THE DIRECTOR TO THE CENTER FOR 

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TRANSLATION RESEARCH AND 

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IMPLEMENTATION SCIENCE TO KICK 

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OFF THE HERO LECTURE, DR. GEORGE

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MENSAH.

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>> GOOD AFTERNOON, LADIES
AND 

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GENTLEMEN.

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WE'RE DELIGHTED TO HAVE YOU AND 

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GOOD MORNING TO THOSE OF YOU 

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JOINING US FROM THE WEST COAST 

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AND EARLIER TIME ZONES.

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IT'S REALLY TRULY AN HONOR AND 

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PRIVILEGE FOR ME TO WELCOME YOU 

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TO THIS 2024 HERO LECTURE SERIES

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SESSION.

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AS YOU HEARD FROM DR. ILIAS IT'S

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PART OF OUR CENTER'S 10th 

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00:04:16,268 --> 00:04:17,502
ANNIVERSARY CELEBRATION.

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WE WANT YOU TO PARTAKE IN THIS 

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CELEBRATION.

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AGAIN, AS YOU HEARD EARLIER 

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TODAY'S SESSION ON ADVANCING 

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HEALTH EQUITY THROUGH COMMUNITY 

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ENGAGED RESEARCH ASCENDED AROUND

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THE TOPIC IS A MATTER OF 

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PRESSING NATIONAL IMPORTANCE.

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OUR PRIMARY GOAL IN THE LECTURE 

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IS SO SHARE LESSONS LEARNED WITH

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COMMUNITY-ENGAGED RESEARCH 

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THROUGH PROGRAMS LIKE THE ONES 

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THAT PCORI SUPPORTS AND OUR NIH 

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COMMUNITY ENGAGEMENT ALLIANCE WE

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CALL CELE AND THEY'RE DESIGN TO 

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DETERMINE PROMISING PRACTICES 

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BASED ON THE CORE FOUNDATIONS OF

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COMMUNITY ENGAGEMENT SUCH AS 

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THOSE SHOWN IN THE UPCOMING NEW 

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3rd EDITION OF THE PRINCIPLES OF

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COMMUNITY ENGAGEMENT YOU HEAR 

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ABOUT FROM DR. LIZ COHN.

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AS YOU KNOW, WE'RE AT A PIVOTAL 

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MOMENT IN THE FIELD OF HEALTH 

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EQUITY.

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THE COVID-19 PANDEMIC REALLY 

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MAGNIFIED FOR US TO CLEARLY SEE 

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THE LONG STANDING GAPS AND 

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INEQUITIES IN HEALTH OUTCOMES 

145
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ESPECIALLY ACROSS RACIAL AND 

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SOCIO ECONOMIC LINES.

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SO THIS LECTURE IS A POWERFUL 

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REMINDER OF OUR COMMITMENT TO 

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BRING THESE GAPS THROUGH 

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RESEARCH THAT IS INCLUSIVE, 

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RESEARCH THAT IS EQUITABLE AND 

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RESEARCH THAT IS DEEPLY EMBEDDED

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IN AND ENGAGED WITH THE 

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COMMUNITIES WE AIM TO SERVE.

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WE HAVE A TRULY DISTINGUISHED 

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PANEL OF EXPERTS TODAY AND IN 

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JUST A MINUTE I'LL TAG DR. ILIAS

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AGAIN TO INTRODUCE OUR PANELISTS

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AND HELP MODERATE THE 

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DISCUSSION.

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BEFORE I DO THAT, I'D LIKE TO 

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TAKE A MOMENT ON BEHALF OF ALL 

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OF US AT CTRIS TO ACKNOWLEDGE 

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AND THANK DR. COOK AS THE 

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DRIVING FORCE OF OUR CENTER FROM

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THE BEGINNING.

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AS CHIEF OF STAFF TO GARY 

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GIBBONS OUR INSTITUTE DIRECTOR 

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BACK IN 2013, DR. COOK PLAYED AN

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INSTRUMENTAL ROLE IN THE SERIES 

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OF RETREATS AND DISCUSSIONS THAT

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LED TO THE FOUNDING OF CTRIS IN 

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2014.

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HER VISIONARY LEADERSHIP WITH 

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PROFESSIONAL DEDICATION TO 

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ADVANCING HEALTH EQUITY AND 

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COMMITMENT TO COMMUNITY-ENGAGED 

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RESEARCH LAID THE FOUNDATION FOR

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WHAT CTRIS HAS BECOME TODAY.

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SO AS WE CELEBRATE OUR 10th 

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ANNIVERSARY AS A CENTER, WE 

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WOULD LIKE TO SAY THANK YOU TO 

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DR. COOK.

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IN CLOSING, I WANT TO EXTEND MY 

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SINCERE THANKS TO ALL OUR 

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DISTINGUISHED PANELISTS, TO ALL 

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OF OUR PARTNERS ESPECIALLY OUR 

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COMMUNITY PARTNERS AND 

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COMMUNITY-BASED ORGANIZATIONS WE

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WORK WITH AND TO EACH OF YOU 

191
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HERE TODAY.

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I REALLY LOOK FORWARD TO WHAT 

193
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WILL BE A STIMULATING HERO 

194
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SESSION.

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SO THANK YOU ALL VERY MUCH FOR 

196
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JOINING US.

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DR. ILIAS, I'LL TURN IT BACK TO 

198
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YOU.

199
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>> THANKS, SO MUCH,
GEORGE.

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SO NOW I HAVE THE HONOR TO 

201
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PRESENT THE TRUE HIGHLIGHTS OF 

202
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TODAY WHICH ARE OUR PANELISTS.

203
00:07:41,673 --> 00:07:42,874
I'LL INTRODUCE EACH PANELIST 

204
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BEFORE THEY SPEAK AND AFTER ALL 

205
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THE TALKS ARE FINISHED, WE WILL 

206
00:07:49,180 --> 00:07:50,215
HAVE A QUESTION AND ANSWER 

207
00:07:50,215 --> 00:07:51,416
SESSION MODERATED BY MYSELF AND 

208
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I REALIZE I DID NOT INTRODUCE 

209
00:07:54,819 --> 00:08:03,895
MYSELF, MALIHA ILIAS THE AND 

210
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POST YOUR QUESTIONS AND WE'LL 

211
00:08:05,864 --> 00:08:07,165
POSE THEM AT THE END.

212
00:08:07,165 --> 00:08:09,768
OUR FIRST SPEAKER AND AS I SPEAK

213
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I KNOW HER SLIDES WILL POP UP 

214
00:08:11,836 --> 00:08:14,005
GETTING READY FOR HER TO TAKE 

215
00:08:14,005 --> 00:08:16,608
THE WHEEL, OUR FIRST SPEAKER AND

216
00:08:16,608 --> 00:08:21,046
PANELIST IS DR. COOK, PCORI'S 

217
00:08:21,046 --> 00:08:21,780
EXECUTIVE DIRECTOR A 

218
00:08:21,780 --> 00:08:24,783
CARDIOLOGIST AND RESEARCHER WITH

219
00:08:24,783 --> 00:08:26,251
A CAREER LEADING INITIATIVES 

220
00:08:26,251 --> 00:08:28,420
ENGAGING PATIENTS, CLINICIANS 

221
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AND OTHER HEALTH CARE 

222
00:08:29,554 --> 00:08:32,190
STAKEHOLDERS AT SOME OF THE 

223
00:08:32,190 --> 00:08:34,025
NATION'S LARGEST FUNDERS.

224
00:08:34,025 --> 00:08:36,761
SHE LEADS THE RESEARCH 

225
00:08:36,761 --> 00:08:39,431
ENGAGEMENT, DISSEMINATION AND 

226
00:08:39,431 --> 00:08:40,765
IMPLEMENTATION AND RESEARCH 

227
00:08:40,765 --> 00:08:41,433
DEVELOPMENT WORK.

228
00:08:41,433 --> 00:08:44,869
PRIOR TO HER CURRENT ROLE, SHE 

229
00:08:44,869 --> 00:08:47,872
SERVED AS SENIOR SCIENTIFIC 

230
00:08:47,872 --> 00:08:49,474
OFFICER AT THE NATIONAL HEART, 

231
00:08:49,474 --> 00:08:51,776
LUNG AND BLOOD INSTITUTE, NHLBI.

232
00:08:51,776 --> 00:08:55,747
AT NHLBI SHE SPEARHEADED THE 

233
00:08:55,747 --> 00:08:57,282
IMPLEMENTATION OF THE STRATEGIC 

234
00:08:57,282 --> 00:08:59,884
PLAN AND PRECISION MEDICINE, 

235
00:08:59,884 --> 00:09:00,652
DATA SCIENCE, SICKLE CELL 

236
00:09:00,652 --> 00:09:01,519
DISEASE AND WOMEN'S HEALTH.

237
00:09:01,519 --> 00:09:03,722
YOU HEARD ABOUT HER ROLE IN THE 

238
00:09:03,722 --> 00:09:04,389
FOUNDING OF CTRIS FROM 

239
00:09:04,389 --> 00:09:07,492
DR. MENSAH.

240
00:09:07,492 --> 00:09:10,962
TODAY, DR. COOK WILL DISCUSS 

241
00:09:10,962 --> 00:09:13,164
PCORI THE PATIENT CENTERED 

242
00:09:13,164 --> 00:09:13,932
OUTCOME RESEARCH INSTITUTE 

243
00:09:13,932 --> 00:09:17,102
HIGHLIGHTING ITS COMMITMENT TO 

244
00:09:17,102 --> 00:09:18,503
ADVANCING HEALTH EQUITY THROUGH 

245
00:09:18,503 --> 00:09:20,872
THE MEANINGFUL ENGAGEMENT OF 

246
00:09:20,872 --> 00:09:22,540
PATIENTS AND COMMUNITIES IN THE 

247
00:09:22,540 --> 00:09:25,477
RESEARCH PROCESS.

248
00:09:25,477 --> 00:09:28,046
SHE'LL SHARE LESSONS AS CAPTURED

249
00:09:28,046 --> 00:09:30,015
IN THE REFRESHED ENGAGEMENT 

250
00:09:30,015 --> 00:09:31,416
RUBRIC THE FOUNDATIONAL 

251
00:09:31,416 --> 00:09:32,717
EXPECTATIONS FOR PARTNERSHIPS 

252
00:09:32,717 --> 00:09:35,553
AND RESEARCH AND TOUCH ON 

253
00:09:35,553 --> 00:09:44,896
PCORI'S FOCUS ON THE 

254
00:09:44,896 --> 00:09:48,400
IMPLEMENTATION AND SHARE THE 

255
00:09:48,400 --> 00:09:51,302
PURPOSE OF PCORI AND THE CENTER 

256
00:09:51,302 --> 00:09:53,004
FOR TRANSLATIONAL RESEARCH AND 

257
00:09:53,004 --> 00:09:53,838
IMPLEMENTATION SCIENCE.

258
00:09:53,838 --> 00:09:55,373
OVER TO YOU.

259
00:09:55,373 --> 00:09:58,343
>> THANK YOU FOR THAT KIND

260
00:09:58,343 --> 00:09:59,511
INTRODUCTION, DR. ILIAS AS WELL 

261
00:09:59,511 --> 00:10:02,180
AS DR. MENSAH FOR THOSE KIND 

262
00:10:02,180 --> 00:10:05,016
WORDS ABOUT THE EARLY DAYS OF 

263
00:10:05,016 --> 00:10:07,719
CTRIS AND MY PLEASURE IN BEING 

264
00:10:07,719 --> 00:10:09,020
INVOLVED WITH WHAT HAS 

265
00:10:09,020 --> 00:10:10,922
FLOURISHED INTO THE CENTER IT IS

266
00:10:10,922 --> 00:10:11,756
TODAY.

267
00:10:11,756 --> 00:10:13,158
I THANK YOU FOR THE INVITATION 

268
00:10:13,158 --> 00:10:15,560
TO SPEAK ON THE PANEL AND GROUP 

269
00:10:15,560 --> 00:10:16,394
TODAY.

270
00:10:16,394 --> 00:10:19,330
I'M SO PLEASED TO BE AMONGST 

271
00:10:19,330 --> 00:10:21,066
FORMER NHLBI COLLEAGUES AND IT'S

272
00:10:21,066 --> 00:10:22,500
AN HONOR REALLY TO DELIVER ONE 

273
00:10:22,500 --> 00:10:23,802
OF THE HERO LECTURES.

274
00:10:23,802 --> 00:10:26,671
I HAD AN OPPORTUNITY TO SEE SOME

275
00:10:26,671 --> 00:10:28,573
PREVIOUS ONES AND RECOGNIZE ALL 

276
00:10:28,573 --> 00:10:30,975
THE INSIGHTFUL TOPICS AND 

277
00:10:30,975 --> 00:10:31,509
DISCUSSIONS.

278
00:10:31,509 --> 00:10:33,144
IT'S WONDERFUL TO SEE CTRIS 

279
00:10:33,144 --> 00:10:33,678
CELEBRATING 10 YEARS.

280
00:10:33,678 --> 00:10:39,317
THANK YOU AGAIN.

281
00:10:39,317 --> 00:10:43,121
AS YOU HEARD FROM DR. ILIAS, IN 

282
00:10:43,121 --> 00:10:46,958
MY CURRENT ROLE IN PCORI A SEE A

283
00:10:46,958 --> 00:10:47,892
SHARED MISSION IN HEALTH EQUITY 

284
00:10:47,892 --> 00:10:49,994
AND THE ENGAGEMENT OF 

285
00:10:49,994 --> 00:10:52,864
COMMUNITIES IN RESEARCH AND THE 

286
00:10:52,864 --> 00:10:53,998
SYSTEMATIC IMPLEMENTATION OF 

287
00:10:53,998 --> 00:10:55,733
RESEARCH RESULTS TO TRULY BE OF 

288
00:10:55,733 --> 00:10:58,369
VALUE TO THOSE THEY'RE INTENDED 

289
00:10:58,369 --> 00:10:59,404
TO BENEFIT.

290
00:10:59,404 --> 00:11:00,638
MY AIM IS TO TELL YOU A LITTLE 

291
00:11:00,638 --> 00:11:08,346
BIT ABOUT PCORI'S WORK AND FOR 

292
00:11:08,346 --> 00:11:10,048
THOSE LESS FAMILIAR AND ENHANCE 

293
00:11:10,048 --> 00:11:11,216
YOUR KNOWLEDGE IF YOU HAVE 

294
00:11:11,216 --> 00:11:12,717
FAMILIARITY WITH OUR WORK, I'LL 

295
00:11:12,717 --> 00:11:14,686
FOCUS PRIMARILY ON THE ROLE OF 

296
00:11:14,686 --> 00:11:16,955
ENGAGEMENT OF PATIENTS AND 

297
00:11:16,955 --> 00:11:18,890
COMMUNITIES AND COMPARATIVE 

298
00:11:18,890 --> 00:11:20,191
CLINICAL EFFECTIVENESS RESEARCH 

299
00:11:20,191 --> 00:11:22,727
WITH A FOCUS ON THE PROMISE OF 

300
00:11:22,727 --> 00:11:24,095
ENGAGEMENT AND ADVANCING HEALTH 

301
00:11:24,095 --> 00:11:26,464
EQUITY AND ALSO WANT TO DESCRIBE

302
00:11:26,464 --> 00:11:32,437
INSIGHTS REGARDING HOW WE 130ER9

303
00:11:32,737 --> 00:11:34,205
 -- SUPPORT ENGAGEMENT OVER THE 

304
00:11:34,205 --> 00:11:40,512
YEARS AND TOUCH ON OUR 

305
00:11:40,512 --> 00:11:41,913
DISSEMINATION AND IMPLEMENTATION

306
00:11:41,913 --> 00:11:44,315
FOR COMMUNITIES THEY'RE INTENDED

307
00:11:44,315 --> 00:11:46,618
TO BENEFIT AND FINISH WITH 

308
00:11:46,618 --> 00:11:49,921
THOUGHTS ON THE FUTURE OF HEALTH

309
00:11:49,921 --> 00:11:51,089
RESEARCH AND WHAT WILL 

310
00:11:51,089 --> 00:11:56,060
FACILITATE PARTICIPATION BY ALL.

311
00:11:56,060 --> 00:12:01,032
I WANT TO BEGIN BY ASKING YOU TO

312
00:12:01,032 --> 00:12:04,569
IMAGINE A PATIENT.

313
00:12:04,569 --> 00:12:07,739
THIS IS ONE OF MANY PEOPLE OF 

314
00:12:07,739 --> 00:12:08,573
COLOR WHO SUFFER FROM 

315
00:12:08,573 --> 00:12:11,009
DISPROPORTIONATE BURDEN OF 

316
00:12:11,009 --> 00:12:12,010
ASTHMA.

317
00:12:12,010 --> 00:12:15,513
THIS PATIENT HAS PERIODIC ASTHMA

318
00:12:15,513 --> 00:12:17,549
ATTACKS SEVERE ENOUGH TO MISS 

319
00:12:17,549 --> 00:12:22,353
DAYS OF WORK AND STRUGGLE TO 

320
00:12:22,353 --> 00:12:23,454
TAKE CARE OF HER CHILDREN AND 

321
00:12:23,454 --> 00:12:25,256
INTERESTED IN WHAT WILL HELP HER

322
00:12:25,256 --> 00:12:27,158
ASTHMA IN HER CIRCUMSTANCES.

323
00:12:27,158 --> 00:12:29,227
THIS DILEMMA FACES MILLIONS OF 

324
00:12:29,227 --> 00:12:30,728
PEOPLE EVERY DAY AND WHY PCORI 

325
00:12:30,728 --> 00:12:33,665
WAS CREATED, TO FUND THE KIND OF

326
00:12:33,665 --> 00:12:36,134
RESEARCH THAT GENERATES THE KIND

327
00:12:36,134 --> 00:12:38,036
OF INFORMATION THAT HELPS PEOPLE

328
00:12:38,036 --> 00:12:39,604
DECIDE WHICH CARE APPROACHES ARE

329
00:12:39,604 --> 00:12:40,772
BEST SUITED FOR THEM.

330
00:12:40,772 --> 00:12:43,808
OUR PATIENT HAS A RELEVANT STUDY

331
00:12:43,808 --> 00:12:47,579
PCORI FUNDED CALLED THE COMPARE 

332
00:12:47,579 --> 00:12:50,982
STUDY COMPARING TWO ASTHMA 

333
00:12:50,982 --> 00:12:51,516
TREATMENTS AMONG AFRICAN 

334
00:12:51,516 --> 00:12:54,686
AMERICAN AND HISPANIC ADULTS AND

335
00:12:54,686 --> 00:12:56,387
PATIENTS BURDENED WITH ASTHMA 

336
00:12:56,387 --> 00:12:58,223
AND MORTALITY AND HAVE UNDER 

337
00:12:58,223 --> 00:12:59,624
REPRESENTATION IN MANAGEMENT 

338
00:12:59,624 --> 00:13:00,258
STUDIES.

339
00:13:00,258 --> 00:13:03,595
NOW, THE PREPARE RESEARCH TEAM 

340
00:13:03,595 --> 00:13:13,004
FOUNDED THE USE OF INHALE D 

341
00:13:13,004 --> 00:13:16,774
CORTICOSTEROIDS AND SAW IMPROVED

342
00:13:16,774 --> 00:13:20,578
QUALITY OF LIFE AND REDUCED THE 

343
00:13:20,578 --> 00:13:22,547
DAYS LOST OF WORK OR SCHOOL.

344
00:13:22,547 --> 00:13:24,482
THE PREPARE STUDY IS AN EXAMPLE 

345
00:13:24,482 --> 00:13:27,018
OF HOW THE APPROACHES TO ADVANCE

346
00:13:27,018 --> 00:13:27,552
HEALTH EQUITY.

347
00:13:27,552 --> 00:13:29,887
THE FUNDING OF THOSE TYPES OF 

348
00:13:29,887 --> 00:13:31,022
POPULATION-SPECIFIC STUDIES OF 

349
00:13:31,022 --> 00:13:32,890
GROUPS THAT MAY CARRY A 

350
00:13:32,890 --> 00:13:34,592
DISPROPORTIONATE BURDEN, MUCH A 

351
00:13:34,592 --> 00:13:37,629
PARTICULAR CONDITION OR HEALTH 

352
00:13:37,629 --> 00:13:38,196
ISSUE OR THAT EXPERIENCE 

353
00:13:38,196 --> 00:13:39,197
SPECIFIC CIRCUMSTANCE THAT NEED 

354
00:13:39,197 --> 00:13:41,633
TO BE ADDRESSED TO ACHIEVE 

355
00:13:41,633 --> 00:13:43,067
OPTIMAL HEALTH.

356
00:13:43,067 --> 00:13:45,737
PREPARE I THINK ALSO PROVIDED A 

357
00:13:45,737 --> 00:13:51,442
GREAT EXAMPLE OF THE INFLUENCE 

358
00:13:51,442 --> 00:13:53,177
OF STAKEHOLDERS AND PATIENTS 

359
00:13:53,177 --> 00:13:54,946
RELATED TO THIS STUDY HELPED THE

360
00:13:54,946 --> 00:13:57,415
RESEARCH STUDY DESIGN A STUDY 

361
00:13:57,415 --> 00:13:59,050
WHOSE PRIME OUTCOMES WERE 

362
00:13:59,050 --> 00:14:00,385
QUALITY OF LIFE AND DAYS MISSED 

363
00:14:00,385 --> 00:14:01,853
FROM WORK OR SCHOOL AND THESE 

364
00:14:01,853 --> 00:14:03,054
WERE THE THINGS THE PATIENTS 

365
00:14:03,054 --> 00:14:04,789
TOLD THEM WERE IMPORTANT TO 

366
00:14:04,789 --> 00:14:04,989
THEM.

367
00:14:04,989 --> 00:14:06,758
NOW, INPUT FROM PATIENTS ALSO 

368
00:14:06,758 --> 00:14:09,227
ENHANCED THE RECRUITMENT AND 

369
00:14:09,227 --> 00:14:11,696
RETENTION OF AFRICAN AMERICAN 

370
00:14:11,696 --> 00:14:13,464
AND HISPANIC STUDY POPULATIONS 

371
00:14:13,464 --> 00:14:17,168
WHICH WITH KNOW NEEDS ONGOING 

372
00:14:17,168 --> 00:14:21,673
AND ATTENTIVE APPROACHES.

373
00:14:21,673 --> 00:14:24,509
I ALSO THINK THIS EXAMPLE NICELY

374
00:14:24,509 --> 00:14:26,177
ILLUSTRATES PCORI'S MISSION TO 

375
00:14:26,177 --> 00:14:27,345
GENERATE THE EVIDENCE THAT 

376
00:14:27,345 --> 00:14:32,717
PATIENT AND CAREGIVERS, 

377
00:14:32,717 --> 00:14:34,552
CLINICIANS AND PURCHASERS AND 

378
00:14:34,552 --> 00:14:36,521
POLICY MAKERS HAVE TO MAKE 

379
00:14:36,521 --> 00:14:39,190
BETTER DECISIONS FOR INDIVIDUALS

380
00:14:39,190 --> 00:14:40,391
AND POPULATIONS.

381
00:14:40,391 --> 00:14:42,694
WHILE PCORI RECEIVED FUND FROM 

382
00:14:42,694 --> 00:14:44,896
THE GOVERNMENT THROUGH A TRUST 

383
00:14:44,896 --> 00:14:46,597
FUND WE'RE AN INDEPENDENT 

384
00:14:46,597 --> 00:14:47,765
NON-PROFIT ORGANIZATION LEADING 

385
00:14:47,765 --> 00:14:51,302
THE WAY FOR PATIENT-CENTERED 

386
00:14:51,302 --> 00:14:54,372
COMPARATIVE CLINICAL 

387
00:14:54,372 --> 00:14:55,373
EFFECTIVENESS RESEARCH.

388
00:14:55,373 --> 00:14:57,175
WE'RE ALSO DRIVING THE RESEARCH 

389
00:14:57,175 --> 00:14:58,209
ENTERPRISE IN THE UNITED STATES 

390
00:14:58,209 --> 00:15:00,211
TO BECOME MORE PATIENT CENTERED 

391
00:15:00,211 --> 00:15:01,846
AND STAKEHOLDER AND 

392
00:15:01,846 --> 00:15:02,714
COMMUNITY-DRIVEN THROUGH THE 

393
00:15:02,714 --> 00:15:05,149
EMPHASIS ON ENGAGING THE HEALTH 

394
00:15:05,149 --> 00:15:07,418
DECISION MAKERS AS TRUE PARTNERS

395
00:15:07,418 --> 00:15:11,689
THROUGHOUT THE ENTIRE RESEARCH 

396
00:15:11,689 --> 00:15:13,157
PROCESS.

397
00:15:13,157 --> 00:15:17,929
TO MORE EXPLICITLY DEFINE 

398
00:15:17,929 --> 00:15:19,630
COMPARATIVE CLINICAL 

399
00:15:19,630 --> 00:15:20,231
EFFECTIVENESS RESEARCH IT 

400
00:15:20,231 --> 00:15:22,200
COMPARES TWO OR MORE HARMS TO 

401
00:15:22,200 --> 00:15:24,402
PREVENT, DIAGNOSE, TREAT OR 

402
00:15:24,402 --> 00:15:28,806
MONITOR A CONDITION OR IMPROVED 

403
00:15:28,806 --> 00:15:29,407
CARE DELIVERY.

404
00:15:29,407 --> 00:15:31,509
CER COMES INTO PLAY FOLLOWING 

405
00:15:31,509 --> 00:15:33,511
THE DISCOVERY SCIENCE OR WHAT 

406
00:15:33,511 --> 00:15:37,115
LEADS TO A NEW PREVENTIVE OR 

407
00:15:37,115 --> 00:15:38,750
DIAGNOSTIC OR THERAPEUTIC 

408
00:15:38,750 --> 00:15:38,983
OPTION.

409
00:15:38,983 --> 00:15:42,887
OUR STUDIES ARE USUALLY FOCUSSED

410
00:15:42,887 --> 00:15:45,256
ON EFFICACY OR WIDESPREAD USE 

411
00:15:45,256 --> 00:15:46,691
ALREADY IN CLINICAL PRACTICE.

412
00:15:46,691 --> 00:15:49,093
THE PCORI STUDIES ARE FOCUSSED 

413
00:15:49,093 --> 00:15:53,998
ON REAL WORLD POPULATIONS FOR 

414
00:15:53,998 --> 00:15:54,399
GENERALIZABILITY.

415
00:15:54,399 --> 00:15:55,566
IT'S DIFFERENT THAN THE 

416
00:15:55,566 --> 00:15:56,701
POPULATIONS TYPICALLY RECRUITED 

417
00:15:56,701 --> 00:15:59,370
FOR EFFICACY TRIALS WHICH TEND 

418
00:15:59,370 --> 00:16:01,406
TO HAVE NARROWER INCLUSION AND 

419
00:16:01,406 --> 00:16:05,643
EXCLUSION CRITERIA.

420
00:16:05,643 --> 00:16:08,479
OUR FUNDING APPROACHLESS 

421
00:16:08,479 --> 00:16:15,987
ANALYZES BY SUB GROUPS AND 

422
00:16:15,987 --> 00:16:16,754
HETEROGENEITY OF GROUPS.

423
00:16:16,754 --> 00:16:26,664
I WANT TO TAKE A MOMENT AND 

424
00:16:26,664 --> 00:16:28,800
EMPHASIZE THERE'S A COMMITMENT 

425
00:16:28,800 --> 00:16:29,734
TO ENGAGING PATIENTS AND 

426
00:16:29,734 --> 00:16:30,635
COMMUNITIES AND THOSE WHAT CARE 

427
00:16:30,635 --> 00:16:31,135
FOR THEM.

428
00:16:31,135 --> 00:16:33,604
WE CAN THINK OF THE ENGAGEMENT 

429
00:16:33,604 --> 00:16:35,640
WORK IN FOUR BROAD ACTIVITIES 

430
00:16:35,640 --> 00:16:36,941
YOU CAN SEE ON THE SLIDE.

431
00:16:36,941 --> 00:16:38,843
I'LL GO INTO MORE DETAIL LATER 

432
00:16:38,843 --> 00:16:43,381
IN THE TALK BUT SOME IDEAS MAY 

433
00:16:43,381 --> 00:16:44,115
ALSO FIELD QUESTIONS IN THE 

434
00:16:44,115 --> 00:16:44,782
DISCUSSION LATER.

435
00:16:44,782 --> 00:16:46,017
THE FIRST ACTIVITY IS THE 

436
00:16:46,017 --> 00:16:48,119
FUNDING OF ENGAGEMENT.

437
00:16:48,119 --> 00:16:51,189
THIS ENTAILS SEVERAL THINGS.

438
00:16:51,189 --> 00:16:53,024
FIRST AND FOREMOST IS WE REQUIRE

439
00:16:53,024 --> 00:16:55,126
THE ENGAGEMENT OF PATIENTS AND 

440
00:16:55,126 --> 00:16:56,828
OTHER PARTNERS IN PCORI FUNDED 

441
00:16:56,828 --> 00:16:58,262
PROJECTS AND STUDIES.

442
00:16:58,262 --> 00:16:59,397
AND THE FOUNDATIONAL 

443
00:16:59,397 --> 00:17:01,199
EXPECTATIONS FOR PARTNERSHIPS 

444
00:17:01,199 --> 00:17:03,501
FOR RESEARCH, WHICH WE'LL TALK 

445
00:17:03,501 --> 00:17:05,336
ABOUT SHORTLY, THERE'S ALSO AN 

446
00:17:05,336 --> 00:17:06,671
INCLUSION OF REQUIREMENT FOR A 

447
00:17:06,671 --> 00:17:08,706
SPECIFIC BUDGET FOR ENGAGEMENT 

448
00:17:08,706 --> 00:17:11,209
BECAUSE WE RECOGNIZE THIS HAS TO

449
00:17:11,209 --> 00:17:15,146
BE FUNDED IN ORDER FOR IT TO BE 

450
00:17:15,146 --> 00:17:16,280
SUCCESSFUL AND MEANINGFUL.

451
00:17:16,280 --> 00:17:17,448
ANOTHER WAY TO SUPPORT IS 

452
00:17:17,448 --> 00:17:19,083
THROUGH FUNDING PROJECT TO BUILD

453
00:17:19,083 --> 00:17:21,285
CAPACITY OF PATIENTS AND 

454
00:17:21,285 --> 00:17:22,920
COMMUNITIES TO COLLABORATE 

455
00:17:22,920 --> 00:17:26,624
ACROSS THE RESEARCH CONTINUUM 

456
00:17:26,624 --> 00:17:27,658
THROUGH THE PCORI REWARDS 

457
00:17:27,658 --> 00:17:29,727
PROGRAM AND SEEK TO GROW THE 

458
00:17:29,727 --> 00:17:31,095
SCIENTIFIC EVIDENCE ABOUT 

459
00:17:31,095 --> 00:17:32,497
EFFECTIVE WAYS TO EFFECT 

460
00:17:32,497 --> 00:17:34,332
NON-RESEARCHER PARTNERS AND 

461
00:17:34,332 --> 00:17:35,399
COMMUNITIES THROUGH FORMAL 

462
00:17:35,399 --> 00:17:37,034
ASSESSMENT OF ENGAGEMENT 

463
00:17:37,034 --> 00:17:39,270
ACTIVITIES IN OUR CER STUDIES AS

464
00:17:39,270 --> 00:17:41,739
WELL AS A TARGETED SCIENCE OF 

465
00:17:41,739 --> 00:17:43,107
ENGAGEMENT FUNDING OPPORTUNITY 

466
00:17:43,107 --> 00:17:44,175
AND WE ALSO FUND LEARNING 

467
00:17:44,175 --> 00:17:46,110
NETWORKS OF AWARDEES TO SUPPORT 

468
00:17:46,110 --> 00:17:47,778
THE DEVELOPMENT OF INVESTIGATORS

469
00:17:47,778 --> 00:17:49,680
AND COMMUNITIES AND INDIVIDUALS 

470
00:17:49,680 --> 00:17:51,082
TO KNOW MORE ABOUT MEANINGFUL 

471
00:17:51,082 --> 00:17:53,451
ENGAGEMENT IN RESEARCH.

472
00:17:53,451 --> 00:17:54,619
NOW, THE SECOND BROAD ACTIVITY 

473
00:17:54,619 --> 00:17:58,256
YOU'LL SEE ON THE SLIDE IS 

474
00:17:58,256 --> 00:18:00,191
DRIVING MEANINGFUL AND EFFECTIVE

475
00:18:00,191 --> 00:18:04,428
ENGAGEMENT IN RESEARCH BEGINNING

476
00:18:04,428 --> 00:18:11,636
WITH EFFORTS TO SUMMARIZE, 

477
00:18:11,636 --> 00:18:14,972
SYNTHESIZE ENGAGEMENT AND WE 

478
00:18:14,972 --> 00:18:16,941
REIMAGINED OUR ENGAGEMENT RUBRIC

479
00:18:16,941 --> 00:18:27,184
AND CALL TOOLS BASED ON FEEDBACK

480
00:18:27,184 --> 00:18:28,519
FROM RESEARCHERS AS WELL AS 

481
00:18:28,519 --> 00:18:28,786
PARTNERS.

482
00:18:28,786 --> 00:18:32,356
AND THE THIRD BROAD ACTIVITY IS 

483
00:18:32,356 --> 00:18:35,259
ONE IN WHICH WE HOST A VARIETY 

484
00:18:35,259 --> 00:18:36,827
OF FORUMS THAT BRING TOGETHER 

485
00:18:36,827 --> 00:18:39,230
PATIENTS, CAREGIVERS, COMMUNITY 

486
00:18:39,230 --> 00:18:40,264
ORGANIZATIONS CLINICIANS, 

487
00:18:40,264 --> 00:18:42,433
RESEARCHERS AND PAYERS TO 

488
00:18:42,433 --> 00:18:44,101
DISCUSS THE INFORMATION NEEDS, 

489
00:18:44,101 --> 00:18:44,669
EVIDENCE GAPS AND RESEARCH 

490
00:18:44,669 --> 00:18:47,204
PRIORITIES.

491
00:18:47,204 --> 00:18:49,373
AND FOURTH IN THE LIST OF 

492
00:18:49,373 --> 00:18:50,541
ACTIVITIES WE DON'T JUST REQUIRE

493
00:18:50,541 --> 00:18:54,946
OUR AWARDEES TO ENGAGE, WE DO IT

494
00:18:54,946 --> 00:18:55,346
OURSELVES.

495
00:18:55,346 --> 00:18:57,081
FOR EXAMPLE IN DEVELOPING OUR 

496
00:18:57,081 --> 00:18:59,183
NATIONAL PRIORITIES FOR HELP WE 

497
00:18:59,183 --> 00:19:00,585
BROUGHT TOGETHER PATIENTS, 

498
00:19:00,585 --> 00:19:02,954
FAMILIES, PURCHASERS, PAYERS, 

499
00:19:02,954 --> 00:19:05,156
RESEARCHERS, REPRESENTATIVES OF 

500
00:19:05,156 --> 00:19:07,758
HOSPITALS AND HEALTH SYSTEMS AND

501
00:19:07,758 --> 00:19:08,926
DOZENS OF COMMUNITY FORUMS AND 

502
00:19:08,926 --> 00:19:14,899
WORKSHOPS.

503
00:19:14,899 --> 00:19:16,634
THIS SLIDE MAY BE FAMILIAR TO 

504
00:19:16,634 --> 00:19:19,437
SOME BUT CAPTURES OUR MODEL FOR 

505
00:19:19,437 --> 00:19:23,608
MEANINGFUL AND ACTIVE ENGAGEMENT

506
00:19:23,608 --> 00:19:26,177
IN ALL STAKEHOLDERS IN THE 

507
00:19:26,177 --> 00:19:26,911
HEALTH CARE ENTERPRISE AT EVERY 

508
00:19:26,911 --> 00:19:27,612
STAGE OF THE PROCESS.

509
00:19:27,612 --> 00:19:29,680
THIS IS THE HEART OF OUR TAGLINE

510
00:19:29,680 --> 00:19:31,015
YOU MAY HAVE HEARD, RESEARCH 

511
00:19:31,015 --> 00:19:31,949
DONE DIFFERENTLY.

512
00:19:31,949 --> 00:19:33,718
PATIENTS AND OTHERS ARE INVOLVED

513
00:19:33,718 --> 00:19:35,319
IN EVERY STAGE IN COMMUNITY 

514
00:19:35,319 --> 00:19:37,288
IDENTIFICATION OF THE AREAS OF 

515
00:19:37,288 --> 00:19:39,256
FOCUS FOUNDING FOR RESEARCH, THE

516
00:19:39,256 --> 00:19:40,925
PLANNING OF STUDIES AND 

517
00:19:40,925 --> 00:19:41,959
DESIGNING THE RESEARCH 

518
00:19:41,959 --> 00:19:43,127
QUESTIONS, REVIEWING 

519
00:19:43,127 --> 00:19:44,929
APPLICATIONS FOR FUNDING AND 

520
00:19:44,929 --> 00:19:47,131
CONDUCTING STUDIES AS WELL AS 

521
00:19:47,131 --> 00:19:48,766
PARTICIPATING IN RESEARCH.

522
00:19:48,766 --> 00:19:51,302
PARTICIPATING IN THE PEER-REVIEW

523
00:19:51,302 --> 00:19:54,939
AND WHEN THE STUDY IS COMPLETE 

524
00:19:54,939 --> 00:19:55,573
HELPING DISSEMINATE RESULTS.

525
00:19:55,573 --> 00:19:58,509
AT THE BOTTOM YOU CAN SEE FOUR 

526
00:19:58,509 --> 00:20:00,011
OVERARCHING PRINCIPLES 

527
00:20:00,011 --> 00:20:00,678
ARTICULATED THERE THAT GROUND 

528
00:20:00,678 --> 00:20:03,814
OUR APPROACH TO ENGAGEMENT.

529
00:20:03,814 --> 00:20:05,783
IT'S INCLUSION, EQUITABLE 

530
00:20:05,783 --> 00:20:07,251
PARTNERSHIPS, TRUST AND 

531
00:20:07,251 --> 00:20:08,586
TRUSTWORTHINESS AND 

532
00:20:08,586 --> 00:20:09,820
ACCOUNTABILITY AND 

533
00:20:09,820 --> 00:20:10,488
ACTIONABILITY.

534
00:20:10,488 --> 00:20:11,122
WE'LL TALK ABOUT THOSE A LITTLE 

535
00:20:11,122 --> 00:20:15,626
BIT MORE.

536
00:20:15,626 --> 00:20:16,894
WE'VE LEARNED QUITE A GREAT DEAL

537
00:20:16,894 --> 00:20:19,263
FROM OUR PATIENT AND COMMUNITIES

538
00:20:19,263 --> 00:20:21,932
THAT HAVE BEEN ENGAGED IN PCORI 

539
00:20:21,932 --> 00:20:24,135
EFFORTS IN THE PAST DECADE OR 

540
00:20:24,135 --> 00:20:26,270
MORE AND RECOGNIZE THE POWER OF 

541
00:20:26,270 --> 00:20:29,774
ENGAGEMENT HELPS WITH THE 

542
00:20:29,774 --> 00:20:30,741
NATIONAL PRIORITY FOR HEALTH 

543
00:20:30,741 --> 00:20:32,043
AROUND ADVANCING HEALTH EQUITY.

544
00:20:32,043 --> 00:20:35,212
WHILE ENGAGEMENT IS A COMPLEX 

545
00:20:35,212 --> 00:20:37,481
ACTIVITY, WE RECOGNIZE THAT NO 

546
00:20:37,481 --> 00:20:39,183
TWO POPULATIONS OR RELATIONSHIPS

547
00:20:39,183 --> 00:20:41,252
ARE EXACTLY THE SAME.

548
00:20:41,252 --> 00:20:42,953
YET WE CAN STILL SUMMARIZE 

549
00:20:42,953 --> 00:20:43,754
LESSONS LEARNED.

550
00:20:43,754 --> 00:20:45,656
WE HAVE LEARNED ENGAGEMENT HELPS

551
00:20:45,656 --> 00:20:47,725
TO FACILITATE RECRUITMENT AND 

552
00:20:47,725 --> 00:20:48,826
RETENTION OVER ALL BUT ALSO THAT

553
00:20:48,826 --> 00:20:50,828
PEOPLE ARE MORE LIKELY TO 

554
00:20:50,828 --> 00:20:51,862
PARTICIPATE IN RESEARCH AS THEY 

555
00:20:51,862 --> 00:20:55,733
FEEL CONNECTED AND FEEL WELCOME 

556
00:20:55,733 --> 00:20:58,135
AND ENGAGEMENT GOES A LONG WAY 

557
00:20:58,135 --> 00:20:59,470
TOWARDS THOSE SENTIMENTS.

558
00:20:59,470 --> 00:21:01,272
IT'S NEVER TOO LATE TO START 

559
00:21:01,272 --> 00:21:02,673
ENGAGING PATIENTS, COMMUNITIES 

560
00:21:02,673 --> 00:21:03,641
AND STAKEHOLDERS.

561
00:21:03,641 --> 00:21:05,743
WE WANT TO ALL DO IT AT THE 

562
00:21:05,743 --> 00:21:07,044
BEGINNING, IT'S IMPORTANT TO 

563
00:21:07,044 --> 00:21:08,479
RECOGNIZE IF YOU HAVEN'T YET 

564
00:21:08,479 --> 00:21:09,947
DONE IT, IT'S NOT TOO LATE TO 

565
00:21:09,947 --> 00:21:11,282
GET STARTED BECAUSE IT WILL HELP

566
00:21:11,282 --> 00:21:15,419
FACILITATE WHAT COMES NEXT.

567
00:21:15,419 --> 00:21:16,087
TRUSTWORTHINESS AND TRUST ARE 

568
00:21:16,087 --> 00:21:17,688
ESSENTIAL FOR EFFECTIVE 

569
00:21:17,688 --> 00:21:18,089
PARTNERSHIPS.

570
00:21:18,089 --> 00:21:20,357
THAT'S A LESSON WE LEARNED EARLY

571
00:21:20,357 --> 00:21:22,827
ON AND THAT THOSE HAVE TO BE 

572
00:21:22,827 --> 00:21:24,361
EARNED THROUGH THE EFFORTS OF 

573
00:21:24,361 --> 00:21:27,031
MEANINGFUL ENGAGEMENT AND TRUST 

574
00:21:27,031 --> 00:21:28,699
CAN ALSO BE A MAJOR COMPONENT OF

575
00:21:28,699 --> 00:21:32,036
LOW RECRUITMENT OR ENROLLMENT OF

576
00:21:32,036 --> 00:21:33,604
UNDER SERVED PARTICIPANTS.

577
00:21:33,604 --> 00:21:35,272
WE'VE LEARNED THAT EARLY IN OUR 

578
00:21:35,272 --> 00:21:38,042
WORK AND CONTINUES TO TEACH US 

579
00:21:38,042 --> 00:21:42,012
LESSONS EVERY DAY.

580
00:21:42,012 --> 00:21:45,182
WE'VE ALSO LEARNED UNDER SERVED 

581
00:21:45,182 --> 00:21:46,450
POPULATIONS IN CLINICAL TRIALS 

582
00:21:46,450 --> 00:21:47,752
HAS COMPLEX ISSUES.

583
00:21:47,752 --> 00:21:49,587
ENGAGEMENT HAS TAUGHT US IT'S 

584
00:21:49,587 --> 00:21:51,388
BEST TO MEET PEOPLE WHERE THEY 

585
00:21:51,388 --> 00:21:51,555
ARE.

586
00:21:51,555 --> 00:21:53,724
WE HAVE TO MEET POPULATIONS IN 

587
00:21:53,724 --> 00:21:57,695
THEIR COMMUNITIES AND UTILIZE 

588
00:21:57,695 --> 00:21:59,864
THE EXPERTISE OF TRUSTED 

589
00:21:59,864 --> 00:22:00,564
COMMUNITY BROKERS TO UNDERSTAND 

590
00:22:00,564 --> 00:22:01,732
THE RIGHT APPROACHES AND BEST 

591
00:22:01,732 --> 00:22:03,667
WAYS TO ENGAGE COMMUNITIES IN 

592
00:22:03,667 --> 00:22:08,539
THE RESEARCH BEING UNDERTAKEN.

593
00:22:08,539 --> 00:22:10,241
AS I MENTIONED WE TRIED TO 

594
00:22:10,241 --> 00:22:11,308
CAPTURE A LOT OF THESE LESSONED 

595
00:22:11,308 --> 00:22:14,879
WE LEARNED ABOUT ENGAGEMENT AS 

596
00:22:14,879 --> 00:22:16,914
WELL AS THE CONCEPT FROM A 

597
00:22:16,914 --> 00:22:20,084
GROWING BODY OF LITERATURE AND 

598
00:22:20,084 --> 00:22:22,353
THE RUBRIC THAT LAY THE GROUND 

599
00:22:22,353 --> 00:22:26,056
WORK FOR EQUITABLE PARTNERSHIPS 

600
00:22:26,056 --> 00:22:27,958
AND PROVIDES GUIDANCE HOW TO 

601
00:22:27,958 --> 00:22:29,093
ENGAGE RESEARCH PARTICIPANTS AND

602
00:22:29,093 --> 00:22:31,228
PARTNERS IN EVERY PHASE OF THE 

603
00:22:31,228 --> 00:22:32,696
RESEARCH STUDY.

604
00:22:32,696 --> 00:22:35,599
SO I'M PLEASED TO SHARE WITH YOU

605
00:22:35,599 --> 00:22:37,067
THIS RECENTLY RE-IMAGINED 

606
00:22:37,067 --> 00:22:39,036
ITERATION OF OUR ENGAGEMENT 

607
00:22:39,036 --> 00:22:40,671
RUBRIC AND KNOWN AS THE 

608
00:22:40,671 --> 00:22:42,273
FOUNDATIONAL EXPECTATIONS FOR 

609
00:22:42,273 --> 00:22:44,108
PARTNERSHIPS IN RESEARCH.

610
00:22:44,108 --> 00:22:45,009
IT INCLUDES THE SIX BUILDING 

611
00:22:45,009 --> 00:22:47,044
BLOCKS YOU SEE ON THE SLIDE.

612
00:22:47,044 --> 00:22:48,512
I'M GOING TO HIGHLIGHT THREE 

613
00:22:48,512 --> 00:22:49,747
WHICH REPRESENT A SIGNIFICANT 

614
00:22:49,747 --> 00:22:51,882
CHANGE IN UPDATE FROM OUR 

615
00:22:51,882 --> 00:22:52,650
EARLIER RUBRIC.

616
00:22:52,650 --> 00:23:00,891
ONE IS STUDY PROPOSALS NEED TO 

617
00:23:00,891 --> 00:23:02,426
INCLUDE A BUDGETS AND HAVE TO 

618
00:23:02,426 --> 00:23:04,662
COMPENSATE PARTNERS WHO GIVE OF 

619
00:23:04,662 --> 00:23:05,930
THEIR TIME AND EXPERTISE FOR THE

620
00:23:05,930 --> 00:23:08,833
DESIGN OF STUDIES AND CONTEXT OF

621
00:23:08,833 --> 00:23:09,066
STUDIES.

622
00:23:09,066 --> 00:23:10,968
RESEARCH TEAMS NEED TO ENGAGE 

623
00:23:10,968 --> 00:23:12,069
EVEN EARLIER WITH THE 

624
00:23:12,069 --> 00:23:13,337
COMMUNITIES IN WHICH THEY'LL BE 

625
00:23:13,337 --> 00:23:13,571
WORKING.

626
00:23:13,571 --> 00:23:16,173
I MENTIONED ONE LESSON WE 

627
00:23:16,173 --> 00:23:17,408
LEARNED IS IT'S NEVER TOO LATE 

628
00:23:17,408 --> 00:23:19,810
TO ENGAGE PATIENTS AND 

629
00:23:19,810 --> 00:23:21,145
COMMUNITIES BUT ENGAGING EVEN 

630
00:23:21,145 --> 00:23:23,547
EARLIER IS HIGHLY BENEFICIAL AND

631
00:23:23,547 --> 00:23:25,616
WE'RE NOW REQUIRING THEY NEED TO

632
00:23:25,616 --> 00:23:26,584
DO SO.

633
00:23:26,584 --> 00:23:28,152
THEY'LL NEED TO DESCRIBE THIS 

634
00:23:28,152 --> 00:23:29,353
ENGAGEMENT IN THEIR APPLICATIONS

635
00:23:29,353 --> 00:23:31,989
AND DETAIL HOW RESEARCH PARTNERS

636
00:23:31,989 --> 00:23:32,756
WILL CONTRIBUTE AS WELL AS SHARE

637
00:23:32,756 --> 00:23:35,626
IN THE LEADERSHIP OF THE STUDY.

638
00:23:35,626 --> 00:23:36,861
AND THERE'S NOW AN EXPECTATION 

639
00:23:36,861 --> 00:23:38,863
OF A FORMAL ASSESSMENT OF 

640
00:23:38,863 --> 00:23:39,864
ENGAGEMENT IN THE STUDY AND 

641
00:23:39,864 --> 00:23:42,633
WE'VE LEARNED A GREAT DEAL ABOUT

642
00:23:42,633 --> 00:23:43,467
ENGAGEMENT BUT SO MUCH MORE WE 

643
00:23:43,467 --> 00:23:46,203
NEED TO LEARN TO TAKE IT TO THE 

644
00:23:46,203 --> 00:23:49,573
NEXT LEVEL AND BUILD THE 

645
00:23:49,573 --> 00:23:52,176
EVIDENCE BASE TO GUIDE 

646
00:23:52,176 --> 00:23:53,377
ACTIVITIES IN THE FUTURE.

647
00:23:53,377 --> 00:23:55,346
IT WILL ADDRESS TO THE EVIDENCE 

648
00:23:55,346 --> 00:23:56,947
BASE AND WE ALSO RECOGNIZE OUR 

649
00:23:56,947 --> 00:23:59,116
SCIENCE OF OWN GAUGEMENT WHICH I

650
00:23:59,116 --> 00:24:00,818
ED EARLIER WILL PROVIDE A LOT OF

651
00:24:00,818 --> 00:24:01,952
INSIGHTS FOR US TO AGGREGATE 

652
00:24:01,952 --> 00:24:04,321
ACROSS THE ACTIVITIES THAT WE 

653
00:24:04,321 --> 00:24:06,056
FUND AND CONDUCT.

654
00:24:06,056 --> 00:24:09,159
NOW, OVER ALL WE ANTICIPATE THE 

655
00:24:09,159 --> 00:24:12,730
FOUNDATIONAL EXPECTATIONS IS TO 

656
00:24:12,730 --> 00:24:14,598
ENGAGE COMMUNITIES AND FOSTER A 

657
00:24:14,598 --> 00:24:17,835
MORE INCLUSIVE RESEARCH CULTURE 

658
00:24:17,835 --> 00:24:20,638
WHICH IN TURN WILL HELP ADVANCE 

659
00:24:20,638 --> 00:24:22,640
THE ROLE OF HEALTH EQUITY.

660
00:24:22,640 --> 00:24:25,009
SO I JUST WANT TO MAKE THIS A 

661
00:24:25,009 --> 00:24:29,980
LITTLE BIT MORE CONCRETE.

662
00:24:29,980 --> 00:24:34,952
AND I WANT TO SHARE AN EXAMPLE 

663
00:24:34,952 --> 00:24:37,521
OF THE POWER MUCH ENGAGEMENT IN 

664
00:24:37,521 --> 00:24:40,291
DEFINING A STUDY TO REFLECT THE 

665
00:24:40,291 --> 00:24:41,558
NEEDS OF A STUDY.

666
00:24:41,558 --> 00:24:43,727
THIS IS WHERE THE RESEARCH TEAM 

667
00:24:43,727 --> 00:24:45,863
SEEKS TO ADDRESS THE SIGNIFICANT

668
00:24:45,863 --> 00:24:47,831
DISPARITY AND MORTALITY RATES 

669
00:24:47,831 --> 00:24:48,933
AMONGST BLACKS AND WHITES IN THE

670
00:24:48,933 --> 00:24:50,601
UNITED STATES AND BLACK AND 

671
00:24:50,601 --> 00:24:52,269
WHITE BIRTHING PEOPLE FOR 

672
00:24:52,269 --> 00:24:53,137
PREGNANCY.

673
00:24:53,137 --> 00:24:55,506
AS YOU KNOW, THAT DISPARITY IS 

674
00:24:55,506 --> 00:24:57,141
THREE TIMES HIGHER FOR BLACK 

675
00:24:57,141 --> 00:24:59,243
WOMEN AS COMPARED TO WHITE 

676
00:24:59,243 --> 00:25:00,611
COUNTERPARTS IN NEARLY HALF THE 

677
00:25:00,611 --> 00:25:03,414
DEATHS RELATED TO MATERNAL 

678
00:25:03,414 --> 00:25:04,615
MORTALITY ARE DUE TO HEART 

679
00:25:04,615 --> 00:25:05,215
DISEASE.

680
00:25:05,215 --> 00:25:09,386
THIS IS BEING CO-LED BY AN 

681
00:25:09,386 --> 00:25:11,488
ACADEMIC RESEARCHER AND A 

682
00:25:11,488 --> 00:25:12,690
PROVIDER WHO EXPERIENCES HEART 

683
00:25:12,690 --> 00:25:14,224
PROBLEMS DURING PREGNANCY AND 

684
00:25:14,224 --> 00:25:16,160
THE STUDY IS BEING CONDUCTED IN 

685
00:25:16,160 --> 00:25:18,295
A HOSPITAL IN PHILADELPHIA THE 

686
00:25:18,295 --> 00:25:19,396
LARGEST SAFETY NET HOSPITAL 

687
00:25:19,396 --> 00:25:21,131
PROVIDER IN PENNSYLVANIA.

688
00:25:21,131 --> 00:25:24,068
WHERE ABOUT HALF THE PATIENTS 

689
00:25:24,068 --> 00:25:27,237
ARE BLACK AND 90% ARE LOW 

690
00:25:27,237 --> 00:25:27,504
ECONOMIC.

691
00:25:27,504 --> 00:25:30,641
IT LOOKS AT WAYS TO IMPROVE 

692
00:25:30,641 --> 00:25:34,111
HEART HEALTH FOR BLACK PEOPLE 

693
00:25:34,111 --> 00:25:35,346
NOT ONLY ADDRESSING DIET AND 

694
00:25:35,346 --> 00:25:36,814
BLOOD PRESSURE AND OTHER FACTORS

695
00:25:36,814 --> 00:25:41,151
THAT HAVE BEEN SHOWN TO CAUSE 

696
00:25:41,151 --> 00:25:43,620
POOR CARDIAC OUTCOMES, INCLUDING

697
00:25:43,620 --> 00:25:47,691
LONELINESS AND STRESS FOR BLACK 

698
00:25:47,691 --> 00:25:50,361
WOMEN AND IT'S A PROGRAM CALLED 

699
00:25:50,361 --> 00:25:52,796
CHANGE OF HEART INCLUDING 

700
00:25:52,796 --> 00:25:55,032
TAILORED FEEDBACK OF NUTRITION 

701
00:25:55,032 --> 00:25:57,801
AND FEEDBACK AND REMOTE 

702
00:25:57,801 --> 00:26:02,673
MONITORING OF BLOOD PRESSURE AND

703
00:26:02,673 --> 00:26:04,208
STAFF WITH EXPERIENCE IN RACISM 

704
00:26:04,208 --> 00:26:05,943
AND BIAS.

705
00:26:05,943 --> 00:26:09,046
PEOPLE IN THE OTHER ARM WILL 

706
00:26:09,046 --> 00:26:10,781
RECEIVE THE HEART INVENTION AND 

707
00:26:10,781 --> 00:26:14,618
COMMUNITY PROVIDERS WITH LIVED 

708
00:26:14,618 --> 00:26:18,589
EXPERIENCE SUCH AS DOULAS AND 

709
00:26:18,589 --> 00:26:21,825
SUPPORT AND MENTAL HEALTH 

710
00:26:21,825 --> 00:26:22,126
SCREENINGS.

711
00:26:22,126 --> 00:26:23,994
THIS WAS DESIGN TO DETERMINE 

712
00:26:23,994 --> 00:26:26,730
WHETHER IT HELPS TREAT SOCIAL 

713
00:26:26,730 --> 00:26:27,564
ISOLATION AND TREAT BLOOD 

714
00:26:27,564 --> 00:26:29,066
PRESSURE AND RESPECTFUL 

715
00:26:29,066 --> 00:26:29,933
MATERNITY CARE.

716
00:26:29,933 --> 00:26:31,468
NOW, I HIGHLIGHT THE STUDY 

717
00:26:31,468 --> 00:26:32,703
BECAUSE IT'S SOME OF THE 

718
00:26:32,703 --> 00:26:33,804
INTERESTING WORK THAT WAS DONE 

719
00:26:33,804 --> 00:26:36,673
AS PART OF THE STUDY DESIGN WAS 

720
00:26:36,673 --> 00:26:38,208
TAKING SHAPE THAT ILLUSTRATES 

721
00:26:38,208 --> 00:26:40,611
THAT POWER AND IMPORTANCE OF THE

722
00:26:40,611 --> 00:26:42,746
EARLY AND INTENTIONAL ENGAGEMENT

723
00:26:42,746 --> 00:26:45,182
IN MAKING SURE THE STUDIES WE 

724
00:26:45,182 --> 00:26:46,617
FUND REFLECT THE NEEDS OF 

725
00:26:46,617 --> 00:26:47,518
PATIENTS AND OTHERS IN THE 

726
00:26:47,518 --> 00:26:47,785
COMMUNITY.

727
00:26:47,785 --> 00:26:49,987
NOW, IN THIS STUDY THE RESEARCH 

728
00:26:49,987 --> 00:26:52,523
TEAM TOOK A SERIES OF STEPS 

729
00:26:52,523 --> 00:26:53,824
INCLUDING FOCUS GROUPS AMONGST 

730
00:26:53,824 --> 00:26:56,627
PHYSICIANS, NURSES, MIDWIVES AND

731
00:26:56,627 --> 00:26:58,095
OTHER HOSPITAL STAFF.

732
00:26:58,095 --> 00:27:00,364
FOCUS GROUPS OF PATIENTS AS WELL

733
00:27:00,364 --> 00:27:03,400
AS COMMUNITY-BASED PERINATAL 

734
00:27:03,400 --> 00:27:04,902
SUPPORT PROFESSIONALS.

735
00:27:04,902 --> 00:27:06,904
A THEMATIC ANALYSIS OF THE INPUT

736
00:27:06,904 --> 00:27:08,672
REVEALED THERE WERE FOUR MAJOR 

737
00:27:08,672 --> 00:27:09,506
THEMES.

738
00:27:09,506 --> 00:27:10,674
TRAUMA IN THE COMMUNITY AND 

739
00:27:10,674 --> 00:27:13,043
HEALTH SYSTEM, LACK OF TRUST, A 

740
00:27:13,043 --> 00:27:14,812
DESIRE TO BE HEARD AND VALUED 

741
00:27:14,812 --> 00:27:16,547
AND HOPE AND ENTHUSIASM.

742
00:27:16,547 --> 00:27:20,017
AND THESE WERE THE FINDINGS THAT

743
00:27:20,017 --> 00:27:21,185
HELPED THE TEAM ADAPT THEIR 

744
00:27:21,185 --> 00:27:23,454
STUDY TO ADDRESS WHAT THEY 

745
00:27:23,454 --> 00:27:27,558
IDENTIFIED WAS THE PERVASIVE 

746
00:27:27,558 --> 00:27:29,059
INFLUENCE OF TRAUMA.

747
00:27:29,059 --> 00:27:34,431
THE RECOGNITION LED THE TEAM TO 

748
00:27:34,431 --> 00:27:35,933
PROVIDE TRAUMA AND INFORMED CARE

749
00:27:35,933 --> 00:27:39,269
TO GUIDE THE INTERACTIONS AND 

750
00:27:39,269 --> 00:27:41,205
EXPAND THE WAY PATIENTS COULD 

751
00:27:41,205 --> 00:27:42,272
ASK FOR ADDITIONAL SUPPORT 

752
00:27:42,272 --> 00:27:46,343
THROUGHOUT THE TRIAL.

753
00:27:46,343 --> 00:27:47,978
TEAM USED THIS TO RECRUIT 

754
00:27:47,978 --> 00:27:52,883
PATIENTS FOR THE STUDY.

755
00:27:52,883 --> 00:27:54,151
THESE ARE POWERFUL LISTENING 

756
00:27:54,151 --> 00:27:55,252
EXAMPLES REPRESENTED BY THE 

757
00:27:55,252 --> 00:27:57,287
FOCUS GROUPS ARE THE ESSENCE OF 

758
00:27:57,287 --> 00:27:58,722
EFFECTIVE AND MEANINGFUL 

759
00:27:58,722 --> 00:27:59,022
ENGAGEMENT.

760
00:27:59,022 --> 00:28:02,025
SO I WANT TO TALK ABOUT SOME OF 

761
00:28:02,025 --> 00:28:03,060
THE CHALLENGES AS WELL RELATED 

762
00:28:03,060 --> 00:28:04,862
TO ENGAGEMENT BECAUSE WE 

763
00:28:04,862 --> 00:28:13,971
RECOGNIZE IT'S NOT EASY.

764
00:28:13,971 --> 00:28:17,374
NOW, EFFECTIVE ENGAGEMENT AS I 

765
00:28:17,374 --> 00:28:20,177
ED CAN CERTAINLY BE WITH 

766
00:28:20,177 --> 00:28:20,477
CHALLENGES.

767
00:28:20,477 --> 00:28:22,846
THERE'S NO ONE SIZE FITS ALL 

768
00:28:22,846 --> 00:28:23,046
MODEL.

769
00:28:23,046 --> 00:28:26,083
THOUGH WE HAVE A RUBRIC AND 

770
00:28:26,083 --> 00:28:26,917
FOUNDATIONAL EXPECTATIONS, 

771
00:28:26,917 --> 00:28:29,920
CIRCUMSTANCES VARY FROM STUDY TO

772
00:28:29,920 --> 00:28:31,421
STUDY AND THERE'S ALMOST AN 

773
00:28:31,421 --> 00:28:32,589
INFINITE NUMBER OF VARIABLES TO 

774
00:28:32,589 --> 00:28:33,090
ACCOUNT FOR.

775
00:28:33,090 --> 00:28:35,859
WE HAVE IDENTIFIED A FEW COMMON 

776
00:28:35,859 --> 00:28:37,828
CHALLENGES ACROSS MANY OF OUR 

777
00:28:37,828 --> 00:28:40,497
STUDIES AND ONE RELATES TO 

778
00:28:40,497 --> 00:28:42,032
INFRASTRUCTURE AND RESOURCES AND

779
00:28:42,032 --> 00:28:45,068
INCLUDES THE NEED FOR READILY 

780
00:28:45,068 --> 00:28:46,069
AVAILABLE TRAININGS FUNDING AND 

781
00:28:46,069 --> 00:28:48,539
STAFF RESOURCES TO DO EFFECTIVE 

782
00:28:48,539 --> 00:28:51,108
ENGAGEMENT AND MONEY TO 

783
00:28:51,108 --> 00:28:51,708
COMPENSATE PARTNERS.

784
00:28:51,708 --> 00:28:56,246
TIME IS ALWAYS A CHALLENGE FOR 

785
00:28:56,246 --> 00:28:56,513
EVERYONE.

786
00:28:56,513 --> 00:28:58,448
PEOPLE LEAD VERY COMPLEX AND 

787
00:28:58,448 --> 00:29:00,184
BUSY LIVES AND HAVE FAMILY 

788
00:29:00,184 --> 00:29:01,084
RESPONSIBILITIES AND OTHER 

789
00:29:01,084 --> 00:29:02,653
DEMANDS ON THEIR TIME SO IT HAS 

790
00:29:02,653 --> 00:29:04,721
TO BE ACCOUNTED FOR AS WE THINK 

791
00:29:04,721 --> 00:29:06,857
ABOUT ENGAGEMENT OPPORTUNITIES.

792
00:29:06,857 --> 00:29:08,525
REGARDING PEOPLE IN TEAMS, WE 

793
00:29:08,525 --> 00:29:12,262
HAVE LEARNED THAT CONDUCTING 

794
00:29:12,262 --> 00:29:15,465
ENGAGED RESEARCH IS A 

795
00:29:15,465 --> 00:29:16,500
MULTI-STAKEHOLDER ENTERPRISE AND

796
00:29:16,500 --> 00:29:18,969
INVOLVES COMMUNITIES, PATIENTS 

797
00:29:18,969 --> 00:29:20,737
AND TRAINED RESEARCHERS WHO ALL 

798
00:29:20,737 --> 00:29:22,506
HAVE DIFFERENT PERSPECTIVES AND 

799
00:29:22,506 --> 00:29:22,773
INTERESTS.

800
00:29:22,773 --> 00:29:24,875
AND ONE OF THE MAJOR CHALLENGES 

801
00:29:24,875 --> 00:29:27,844
IN RECRUITING PARTICIPANTS IS 

802
00:29:27,844 --> 00:29:32,015
THAT WE STRIVE IN THE STUDIES WE

803
00:29:32,015 --> 00:29:32,916
FUND PARTICIPANTS TRULY 

804
00:29:32,916 --> 00:29:34,451
REPRESENT THE DIVERSITY OF THE 

805
00:29:34,451 --> 00:29:35,519
INDIVIDUALS WITH CONDITIONS OR 

806
00:29:35,519 --> 00:29:37,854
CIRCUMSTANCES OF STUDY.

807
00:29:37,854 --> 00:29:39,890
SO THE ENGAGEMENT OPPORTUNITIES 

808
00:29:39,890 --> 00:29:43,860
MAY HELP OVERCOME SOME 

809
00:29:43,860 --> 00:29:45,395
CHALLENGES THAT GET TO THE 

810
00:29:45,395 --> 00:29:47,564
PARTICIPANTS THAT REPRESENT THE 

811
00:29:47,564 --> 00:29:49,666
DIVERSITY OF INDIVIDUALS WITH 

812
00:29:49,666 --> 00:29:50,367
CERTAIN CONDITIONS.

813
00:29:50,367 --> 00:29:51,468
THERE COULD ALSO BE 

814
00:29:51,468 --> 00:29:53,136
ORGANIZATIONAL BARRIERS THOUGH.

815
00:29:53,136 --> 00:29:55,105
WE SEE THIS IN A LOT OF THE 

816
00:29:55,105 --> 00:29:58,475
P.I.s WHO REPORT TO US THAT SOME

817
00:29:58,475 --> 00:30:00,544
IRBs FOR EXAMPLE HAVE NOT ALWAYS

818
00:30:00,544 --> 00:30:02,579
UNDERSTOOD HOW AN ENGAGED 

819
00:30:02,579 --> 00:30:05,082
PATIENT OR COMMUNITY OR OTHER 

820
00:30:05,082 --> 00:30:06,583
STAKEHOLDER IS FUNDAMENTALLY 

821
00:30:06,583 --> 00:30:07,851
DIFFERENT THAN THOSE 

822
00:30:07,851 --> 00:30:09,319
PARTICIPANTS IN THE RESEARCH 

823
00:30:09,319 --> 00:30:09,720
STUDY.

824
00:30:09,720 --> 00:30:13,257
AND WE ALSO HEAR ABOUT 

825
00:30:13,257 --> 00:30:14,591
CHALLENGES AND BALANCING VIEWS 

826
00:30:14,591 --> 00:30:15,192
AND PRIORITIES.

827
00:30:15,192 --> 00:30:16,893
THIS IS PERHAPS ONE OF THE 

828
00:30:16,893 --> 00:30:17,728
GREATEST CHALLENGES.

829
00:30:17,728 --> 00:30:20,197
WE THINK OF RANDOMIZED CONTROL 

830
00:30:20,197 --> 00:30:21,732
TRIALS AS A GOLD STANDARD IN 

831
00:30:21,732 --> 00:30:23,300
CLINICAL RESEARCH AND THEY CAN 

832
00:30:23,300 --> 00:30:25,602
BE VIEWED AS UNJUST OR UNFAIR BY

833
00:30:25,602 --> 00:30:27,938
SOME PATIENTS AND COMMUNITY 

834
00:30:27,938 --> 00:30:31,241
MEMBERS AND THEY MAY BE WILLING 

835
00:30:31,241 --> 00:30:33,844
TO PARTICIPATE OR RESIGNED ABOUT

836
00:30:33,844 --> 00:30:34,711
PARTICIPATING IN SUCH PROJECT.

837
00:30:34,711 --> 00:30:37,281
HEARING AND AND TALKING THROUGH 

838
00:30:37,281 --> 00:30:38,682
STUDY DESIGN IS AN IMPORTANT 

839
00:30:38,682 --> 00:30:41,251
COMPONENT OF ENGAGEMENT.

840
00:30:41,251 --> 00:30:44,655
BUT WE ALSO RECOGNIZE THAT USING

841
00:30:44,655 --> 00:30:47,124
PRIORITIES EVEN AMONG CLINICIANS

842
00:30:47,124 --> 00:30:48,992
CAN BE DIFFERENT AS WELL AS WE 

843
00:30:48,992 --> 00:30:51,061
THINK ABOUT DIFFERENT TYPES OF 

844
00:30:51,061 --> 00:30:53,163
TREATMENT WHICH SOMETIMES THE 

845
00:30:53,163 --> 00:30:55,332
QUESTIONS ARISE ABOUT WHAT 

846
00:30:55,332 --> 00:30:57,467
REPRESENTS EQUIPOISE WHEN WE 

847
00:30:57,467 --> 00:30:59,136
THINK OF COMPARATIVE 

848
00:30:59,136 --> 00:30:59,936
INTERVENTIONS IN CER.

849
00:30:59,936 --> 00:31:02,973
IN REALITY, CONDUCTING EFFECTIVE

850
00:31:02,973 --> 00:31:04,975
MEANINGFUL ENGAGEMENT HAS MANY 

851
00:31:04,975 --> 00:31:08,011
CHALLENGES FAR BEYOND WHAT I CAN

852
00:31:08,011 --> 00:31:13,717
VURMZ IN THE SLIDE BUT -- 

853
00:31:13,717 --> 00:31:15,252
ETHICAL REVIEWS AND ASSURANCES 

854
00:31:15,252 --> 00:31:16,853
ARE PROMINENT THINGS WE HEAR 

855
00:31:16,853 --> 00:31:18,822
ABOUT AND ENGAGEMENT CAN BE 

856
00:31:18,822 --> 00:31:20,357
DISRUPTIVE SO IT REQUIRES 

857
00:31:20,357 --> 00:31:22,926
PATIENTS AND FLEXIBILITY.

858
00:31:22,926 --> 00:31:24,494
BUT WE FUNDAMENTALLY BELIEVE THE

859
00:31:24,494 --> 00:31:31,168
BENEFIT IS WORTH IT.

860
00:31:31,168 --> 00:31:37,374
SO WE HAVE TAKEN AN APPROACH TO 

861
00:31:37,374 --> 00:31:39,976
RESOURCES RESOURCES AND TOOLS 

862
00:31:39,976 --> 00:31:41,144
AND SUPPORTS ARE THE OVERCOMING 

863
00:31:41,144 --> 00:31:42,346
THE CHALLENGES KNOWING IT'S 

864
00:31:42,346 --> 00:31:45,148
IMPORTANT TO BUY INTO THE 

865
00:31:45,148 --> 00:31:46,283
ENGAGEMENT NECESSARY FOR THE 

866
00:31:46,283 --> 00:31:48,685
COMMUNITY AND PATIENT-CENTERED 

867
00:31:48,685 --> 00:31:49,886
RESEARCH WE FEEL BENEFITS THOSE 

868
00:31:49,886 --> 00:31:50,854
WE SERVE.

869
00:31:50,854 --> 00:31:52,456
SOME RESOURCES MAY BE OF 

870
00:31:52,456 --> 00:31:53,390
INTEREST TO YOU AS YOU THINK 

871
00:31:53,390 --> 00:31:59,796
ABOUT THE TYPES OF THINGS THAT 

872
00:31:59,796 --> 00:32:03,934
YOU MAY WANT TO PARTICIPATE IN.

873
00:32:03,934 --> 00:32:06,169
SOME RESOURCES ARE AVAILABLE ON 

874
00:32:06,169 --> 00:32:08,105
OUR WEBSITE INCLUDING A RESEARCH

875
00:32:08,105 --> 00:32:10,240
FUNDAMENTALS COURSE WHICH IS 

876
00:32:10,240 --> 00:32:13,410
TRYING TO HELP FAMILIARIZE THE 

877
00:32:13,410 --> 00:32:15,245
NON-RESEARCHERS WITH RESEARCH 

878
00:32:15,245 --> 00:32:16,780
PRINCIPLES TO BE FULL AND EQUAL 

879
00:32:16,780 --> 00:32:17,647
PARTNERS IN THE RESEARCH, 

880
00:32:17,647 --> 00:32:20,150
DESIGN, STUDY AND OTHER ASPECTS.

881
00:32:20,150 --> 00:32:23,820
WE'VE ALSO CREATED MODULES ON 

882
00:32:23,820 --> 00:32:25,555
BUILDING EFFECTIVE 

883
00:32:25,555 --> 00:32:26,823
MULTI-STAKEHOLDER RESEARCH 

884
00:32:26,823 --> 00:32:27,190
TEAMS.

885
00:32:27,190 --> 00:32:29,059
THIS IS TO HELP RESEARCHERS AND 

886
00:32:29,059 --> 00:32:30,527
NON-RESEARCHERS TO WORK TOGETHER

887
00:32:30,527 --> 00:32:33,029
EFFECTIVELY AND WE'VE CREATED A 

888
00:32:33,029 --> 00:32:34,931
SEARCHABLE REPOSITORY OF TOOLS 

889
00:32:34,931 --> 00:32:37,567
AND RESOURCES FROM THOSE WHO 

890
00:32:37,567 --> 00:32:40,137
HAVE BEEN FUNDED BY PCORI AND 

891
00:32:40,137 --> 00:32:41,505
USED THESE TYPES OF RESOURCES 

892
00:32:41,505 --> 00:32:43,940
AND TOOLS IN THEIR PROJECTS THAT

893
00:32:43,940 --> 00:32:46,576
NOW ARE AVAILABLE IN REPOSITORY 

894
00:32:46,576 --> 00:32:48,044
FOR OTHERS TO POTENTIALLY USE.

895
00:32:48,044 --> 00:32:49,780
YOU CAN FIND ALL THESE AS I 

896
00:32:49,780 --> 00:32:52,115
MENTIONED ON THE WEBSITE UNDER 

897
00:32:52,115 --> 00:32:56,820
ENGAGEMENT RESOURCES.

898
00:32:56,820 --> 00:32:59,489
I HOPE YOU HEARD A BIT ABOUT THE

899
00:32:59,489 --> 00:33:02,058
EXTEND TO WHICH ACHIEVING HEALTH

900
00:33:02,058 --> 00:33:03,493
EQUITY IS WOVEN THROUGH ALMOST 

901
00:33:03,493 --> 00:33:04,694
EVERYTHING WE DO AT PCORI.

902
00:33:04,694 --> 00:33:06,830
I DID WANT TO NOTE THAT 

903
00:33:06,830 --> 00:33:08,565
ACHIEVING HEALTH EQUITY IS ONE 

904
00:33:08,565 --> 00:33:10,434
OF OUR FIVE NATIONAL PRIORITIES 

905
00:33:10,434 --> 00:33:11,535
FOR HEALTH.

906
00:33:11,535 --> 00:33:13,637
I MENTIONED IT BRIEFLY BUT I 

907
00:33:13,637 --> 00:33:14,438
WANTED TO HIGHLIGHT A COUPLE 

908
00:33:14,438 --> 00:33:16,973
SPECIFIC INITIATIVES WE HAVE 

909
00:33:16,973 --> 00:33:18,108
UNDERWAY IN THE SERVICE AND NOW 

910
00:33:18,108 --> 00:33:19,910
WE THINK ABOUT IT AS A GOAL BUT 

911
00:33:19,910 --> 00:33:21,812
NOW WE ALSO THINK ABOUT IT AS 

912
00:33:21,812 --> 00:33:23,280
FUNDAMENTALLY INTEGRATED INTO 

913
00:33:23,280 --> 00:33:24,881
ALL THE OTHER NATIONAL 

914
00:33:24,881 --> 00:33:26,450
PRIORITIES FOR HEALTH.

915
00:33:26,450 --> 00:33:29,119
AS YOU SEE HERE ON THE RIGHT, WE

916
00:33:29,119 --> 00:33:31,521
RECENTLY FUNDED A SUPPLEMENTAL 

917
00:33:31,521 --> 00:33:33,590
FUNDING OPPORTUNITY WHERE WE'RE 

918
00:33:33,590 --> 00:33:35,525
FOCUSSED ON HOW WE MIGHT BE ABLE

919
00:33:35,525 --> 00:33:37,594
TO FUND ELIGIBLE PROJECTS TO 

920
00:33:37,594 --> 00:33:39,362
INCREASE THEIR DIVERSITY AND 

921
00:33:39,362 --> 00:33:41,398
REPRESENTATIVENESS OF STUDY 

922
00:33:41,398 --> 00:33:42,365
POPULATIONS IN THE CER STUDIES 

923
00:33:42,365 --> 00:33:44,367
THEY WERE CONDUCTED AS WELL AS 

924
00:33:44,367 --> 00:33:48,405
EXPAND THE ABILITY TO CONDUCT 

925
00:33:48,405 --> 00:33:49,739
HETEROGENEITY ANALYSES IN THE 

926
00:33:49,739 --> 00:33:51,041
CONTEXT OF THE CONDITIONS AND 

927
00:33:51,041 --> 00:33:52,008
INTERVENTION OF THE STUDY.

928
00:33:52,008 --> 00:33:54,511
WE ALSO RECENTLY FUNDED ANOTHER 

929
00:33:54,511 --> 00:33:57,447
INITIATIVE WE CALL THE PARTNER 

930
00:33:57,447 --> 00:33:59,115
FUNDING INITIATIVE WHICH AIMS TO

931
00:33:59,115 --> 00:34:01,151
ENHANCE THE PARTICIPATION OF 

932
00:34:01,151 --> 00:34:02,052
COMMUNITY ORGANIZATIONS IN 

933
00:34:02,052 --> 00:34:04,287
RESEARCH BY POSITIONING THEM AS 

934
00:34:04,287 --> 00:34:07,057
FULL AND EQUAL PARTNERS ALONG 

935
00:34:07,057 --> 00:34:09,893
SIDE RESEARCH ORGANIZATIONS AS 

936
00:34:09,893 --> 00:34:10,560
CO-LEADERS IN THE RESEARCH 

937
00:34:10,560 --> 00:34:11,695
THEY'RE UNDERTAKING.

938
00:34:11,695 --> 00:34:14,297
THIS IS SIMILAR TO A MODEL THAT 

939
00:34:14,297 --> 00:34:17,667
YOU HEARD ABOUT IN THE STUDY 

940
00:34:17,667 --> 00:34:19,469
RELATED TO BLACK BIRTHING PEOPLE

941
00:34:19,469 --> 00:34:21,571
I MENTIONED NOT ALONG AGO AND 

942
00:34:21,571 --> 00:34:24,007
ONE OF THE BUILDING BLOCKS OF 

943
00:34:24,007 --> 00:34:28,378
OUR FOUNDATIONAL EXPECTATIONS 

944
00:34:28,378 --> 00:34:28,845
FOR RESEARCH.

945
00:34:28,845 --> 00:34:32,949
AND IT FOCUSSED ON INTERVENTIONS

946
00:34:32,949 --> 00:34:34,117
ADDRESSING HEALTH CONDITIONS AS 

947
00:34:34,117 --> 00:34:35,719
WELL AS SOCIAL DETERMINATES OF 

948
00:34:35,719 --> 00:34:39,155
HEALTH TO IMPROVE MATERNAL 

949
00:34:39,155 --> 00:34:40,156
OUTCOMES AND MADE THE FOUR 

950
00:34:40,156 --> 00:34:45,161
AYEARS UNDER THE PARTNER FUNDING

951
00:34:45,161 --> 00:34:47,964
AND $80 MILLION TOTAL.

952
00:34:47,964 --> 00:34:50,901
IT'S A SIGNIFICANT INVESTMENT TO

953
00:34:50,901 --> 00:34:54,304
ENROLL 100,000 PREGNANT OR 

954
00:34:54,304 --> 00:34:56,840
POSTPARTUM PEOPLE AND COVER A 

955
00:34:56,840 --> 00:34:58,408
WIDE ARRAY OF SETTINGS AND 

956
00:34:58,408 --> 00:35:00,510
INTERVENTIONS AND SEE THE FOUR 

957
00:35:00,510 --> 00:35:02,345
STUDIES WILL INVOLVE DOZENS OF 

958
00:35:02,345 --> 00:35:04,414
COMMUNITY OHS AND SEE THEM AS 

959
00:35:04,414 --> 00:35:06,149
POTENTIAL TO HAVE A YIELD OF 

960
00:35:06,149 --> 00:35:14,257
R6R7 AND  -- OF RESEARCH TO HELP

961
00:35:14,257 --> 00:35:17,494
REDUCE INEQUITIES AND REDUCE 

962
00:35:17,494 --> 00:35:18,929
MATERNAL MORBIDITY AND 

963
00:35:18,929 --> 00:35:19,195
MORTALITY.

964
00:35:19,195 --> 00:35:22,999
SO WE'RE EXCITED ABOUT THIS 

965
00:35:22,999 --> 00:35:23,533
PROGRAM.

966
00:35:23,533 --> 00:35:26,603
I WANTED TO TOUCH A LITTLE BIT 

967
00:35:26,603 --> 00:35:30,740
ON A FOUNDATIONAL ELEMENT ON 

968
00:35:30,740 --> 00:35:31,541
PCORI'S RESEARCH.

969
00:35:31,541 --> 00:35:33,443
AND THIS IS A SHARED PURPOSE 

970
00:35:33,443 --> 00:35:36,413
THAT CLEARLY DEMONSTRATED A 

971
00:35:36,413 --> 00:35:38,515
PURPOSE WITH CTRIS' MISSION, THE

972
00:35:38,515 --> 00:35:39,716
FOCUS ON DISSEMINATION AND 

973
00:35:39,716 --> 00:35:40,850
IMPLEMENTATION OF THE RESEARCH 

974
00:35:40,850 --> 00:35:44,487
RESULTS AND FINDINGS FROM 

975
00:35:44,487 --> 00:35:46,556
PCORI-FUNDED CER.

976
00:35:46,556 --> 00:35:47,924
NOW THE OFFICE HAS FUNDING 

977
00:35:47,924 --> 00:35:50,126
OPPORTUNITIES FOR PROJECTS THAT 

978
00:35:50,126 --> 00:35:52,495
AIM TO IMPLEMENT THE RESULTS OF 

979
00:35:52,495 --> 00:35:54,364
THEIR STUDIES INTO CLINICAL 

980
00:35:54,364 --> 00:35:55,198
PRACTICE AS WELL AS SOME 

981
00:35:55,198 --> 00:35:56,600
PROJECTS FOCUSSED ON 

982
00:35:56,600 --> 00:35:58,635
DISSEMINATION ALONE OF THE 

983
00:35:58,635 --> 00:35:59,703
RESULTS IN TERMS OF SPREADING 

984
00:35:59,703 --> 00:36:01,104
KNOWLEDGE AND AWARENESS OF 

985
00:36:01,104 --> 00:36:03,640
RESULTS TO THOSE THAT MAY BE 

986
00:36:03,640 --> 00:36:05,008
MOST ABLE TO BENEFIT.

987
00:36:05,008 --> 00:36:06,910
NOW, THE STUDY I MENTIONED IN 

988
00:36:06,910 --> 00:36:09,112
THE BEGINNING RELATED TO OUR 

989
00:36:09,112 --> 00:36:10,246
ASTHMA PATIENT THINKING BACK A 

990
00:36:10,246 --> 00:36:11,281
FEW MINUTES WAS ALSO ONE OF 

991
00:36:11,281 --> 00:36:14,250
THOSE STUDIES AWARDED FUNDING 

992
00:36:14,250 --> 00:36:15,885
FOR AN IMPLEMENTATION PROJECT.

993
00:36:15,885 --> 00:36:19,022
AND YOU MAY RECALL THE STUDY 

994
00:36:19,022 --> 00:36:21,057
FOUND A TREATMENT APPROACH THAT 

995
00:36:21,057 --> 00:36:25,028
WAS AROUND PATIENT ACTIVATED 

996
00:36:25,028 --> 00:36:27,731
RELIEVER TRIGGERED 

997
00:36:27,731 --> 00:36:28,732
CORTICOSTEROIDS LED TO FEWER 

998
00:36:28,732 --> 00:36:30,834
MISSED DAYS OF WORK AND SCHOOL.

999
00:36:30,834 --> 00:36:31,801
THE IMPLEMENTATION PROJECT IS 

1000
00:36:31,801 --> 00:36:33,737
TAKING THAT APPROACH AND PUTTING

1001
00:36:33,737 --> 00:36:38,208
IT INTO REGULAR CARE AT HOSPITAL

1002
00:36:38,208 --> 00:36:39,576
SYSTEMS IN FOUR STATES THAT 

1003
00:36:39,576 --> 00:36:40,677
SERVE UNDER REPRESENTED 

1004
00:36:40,677 --> 00:36:42,145
COMMUNITIES.

1005
00:36:42,145 --> 00:36:44,547
NOW, THREE OF THESE SYSTEMS 

1006
00:36:44,547 --> 00:36:45,482
PRIMARILY SERVE BLACK AND 

1007
00:36:45,482 --> 00:36:47,684
HISPANIC PATIENTS AND THOSE 

1008
00:36:47,684 --> 00:36:48,218
WITHOUT HEALTH INSURANCE.

1009
00:36:48,218 --> 00:36:50,153
THE TEAM IS WORKING WITH 

1010
00:36:50,153 --> 00:36:52,122
CLINICIAN CHAMPIONS AT EACH SITE

1011
00:36:52,122 --> 00:36:53,523
PROMOTING AWARENESS MUCH THIS 

1012
00:36:53,523 --> 00:36:57,494
PARTICULAR APPROACH THROUGH 

1013
00:36:57,494 --> 00:37:00,930
INTERNAL COMMUNICATIONS AND 

1014
00:37:00,930 --> 00:37:02,098
SELF-TEACHING MATERIALS AND 

1015
00:37:02,098 --> 00:37:03,566
ADAPTING ELECTRONIC HEALTH 

1016
00:37:03,566 --> 00:37:05,869
RECORD TO IDENTIFY PATIENTS AND 

1017
00:37:05,869 --> 00:37:07,504
ALERT CLINICIANS THAT MAY 

1018
00:37:07,504 --> 00:37:10,807
BENEFIT FROM THIS INTERVENTION.

1019
00:37:10,807 --> 00:37:11,941
MORE THAN 1600 CLINICIANS ARE 

1020
00:37:11,941 --> 00:37:13,910
LEARNING ABOUT THE RESULTS OF 

1021
00:37:13,910 --> 00:37:16,413
THIS CER STUDY THROUGH THE 

1022
00:37:16,413 --> 00:37:17,213
IMPLEMENTATION PROJECT AND 

1023
00:37:17,213 --> 00:37:19,683
NEARLY 15,000 PATIENTS WITH 

1024
00:37:19,683 --> 00:37:20,950
ASTHMA WILL RECEIVE THIS 

1025
00:37:20,950 --> 00:37:22,485
INTERVENTION.

1026
00:37:22,485 --> 00:37:23,219
WE ALSO HAVE A PROJECT 

1027
00:37:23,219 --> 00:37:25,255
EVALUATION FUNDED AS PART OF 

1028
00:37:25,255 --> 00:37:27,323
THIS PROJECT ASSESSING THE 

1029
00:37:27,323 --> 00:37:28,558
OUTCOMES THAT INCLUDE THE 

1030
00:37:28,558 --> 00:37:32,796
PROPORTION OF PATIENTS 

1031
00:37:32,796 --> 00:37:33,997
PRESCRIBED THIS INTERVENTION AND

1032
00:37:33,997 --> 00:37:39,869
RATES OF ASTHMA EXACERBATION AND

1033
00:37:39,869 --> 00:37:40,970
VISITS TO HOSPITALIZATION AND 

1034
00:37:40,970 --> 00:37:42,038
HOPES THIS SHOWS THE WAY WE TRY 

1035
00:37:42,038 --> 00:37:44,708
TO TAKE THE RESULTS AND TRY TO 

1036
00:37:44,708 --> 00:37:46,910
CROSS THE FINISH LINE WITH THEM 

1037
00:37:46,910 --> 00:37:49,546
IN GETTING RESULTS TO THOSE THAT

1038
00:37:49,546 --> 00:37:49,879
BENEFIT.

1039
00:37:49,879 --> 00:37:52,082
ANOTHER EXAMPLE OF A DIFFERENT 

1040
00:37:52,082 --> 00:37:53,349
TYPE OF IMPLEMENTATION 

1041
00:37:53,349 --> 00:37:55,452
INITIATIVE WE ALSO HAVE TAKEN ON

1042
00:37:55,452 --> 00:37:58,922
AT PCORI AND WE'RE EXCITED ABOUT

1043
00:37:58,922 --> 00:38:00,623
AS WELL IS THE HEALTH SYSTEMS 

1044
00:38:00,623 --> 00:38:01,291
IMPLEMENTATION INITIATIVE.

1045
00:38:01,291 --> 00:38:05,061
THIS IS DESIGN TO LEVERAGE THE 

1046
00:38:05,061 --> 00:38:06,062
ABILITY OF HEALTH SYSTEMS TO 

1047
00:38:06,062 --> 00:38:07,897
HAVE IMPROVEMENTS OF CARE BASED 

1048
00:38:07,897 --> 00:38:09,899
ON THEIR INTIMATE KNOWLEDGE OF 

1049
00:38:09,899 --> 00:38:11,367
THEIR COMMUNITIES AND WORK 

1050
00:38:11,367 --> 00:38:11,835
FLOWS.

1051
00:38:11,835 --> 00:38:13,002
I'M NOT GOING INTO GREAT DETAIL 

1052
00:38:13,002 --> 00:38:14,370
BUT HAPPY TO DISCUSS IT LATER IN

1053
00:38:14,370 --> 00:38:17,006
THE SESSION IF WE HAVE TIME BUT 

1054
00:38:17,006 --> 00:38:18,975
THIS IS POTENTIALLY 

1055
00:38:18,975 --> 00:38:20,276
GROUNDBREAKING INITIATIVE WHERE 

1056
00:38:20,276 --> 00:38:22,245
THERE'S 40 HEALTH SYSTEMS THAT 

1057
00:38:22,245 --> 00:38:23,313
REPRESENT ABOUT 80 MILLION 

1058
00:38:23,313 --> 00:38:26,049
UNIQUE PATIENTS PARTICIPATING 

1059
00:38:26,049 --> 00:38:26,950
AND TOTAL ABOUT $50 MILLION 

1060
00:38:26,950 --> 00:38:30,086
WORTH OF FUNDING SO THUS FAR.

1061
00:38:30,086 --> 00:38:31,187
THESE SYSTEMS REPRESENT A GREAT 

1062
00:38:31,187 --> 00:38:35,525
DIVERSITY IN THE COUNTRY.

1063
00:38:35,525 --> 00:38:38,294
AND MANY SERVING HISTORICALLY 

1064
00:38:38,294 --> 00:38:41,097
MARGINALIZED GROUPS AND THOSE AT

1065
00:38:41,097 --> 00:38:42,899
FEDERALLY QUALIFIED SYSTEMS AND 

1066
00:38:42,899 --> 00:38:44,934
OTHER SYSTEMS THAT EXPERIENCED 

1067
00:38:44,934 --> 00:38:45,502
SERVING THOSE PATIENTS AND 

1068
00:38:45,502 --> 00:38:48,271
COMMUNITIES.

1069
00:38:48,271 --> 00:38:52,909
AND IN A FEW WEEKS WE'LL 

1070
00:38:52,909 --> 00:38:53,843
IMPLEMENT EVIDENCE FROM PCORI 

1071
00:38:53,843 --> 00:38:55,612
FUNDED STUDIES.

1072
00:38:55,612 --> 00:38:56,780
THOSE ON LIFESTYLE TREATMENT FOR

1073
00:38:56,780 --> 00:39:00,116
WEIGHT LOSS IN PRIMARY CARE 

1074
00:39:00,116 --> 00:39:01,017
SETTINGS AND ANTIBIOTIC 

1075
00:39:01,017 --> 00:39:01,718
STEWARDSHIP.

1076
00:39:01,718 --> 00:39:02,619
WE'RE EXCITED FOR THOSE 

1077
00:39:02,619 --> 00:39:03,253
IMPLEMENTATION PROJECTS TO GET 

1078
00:39:03,253 --> 00:39:06,990
STARTED.

1079
00:39:06,990 --> 00:39:08,091
THE LAST COUPLE OF MINUTES WE 

1080
00:39:08,091 --> 00:39:10,593
HAVE TODAY I WANTED TO BRING 

1081
00:39:10,593 --> 00:39:11,394
TOGETHER SOME OF THE MAIN 

1082
00:39:11,394 --> 00:39:13,663
THREADS OF THE TALK WITH A BROAD

1083
00:39:13,663 --> 00:39:15,265
VISION FOR THE TEMPERATURE OF 

1084
00:39:15,265 --> 00:39:18,168
HEALTH RESEARCH THAT I THINK CAN

1085
00:39:18,168 --> 00:39:20,837
ACCELERATE THE ADVANCEMENT OF 

1086
00:39:20,837 --> 00:39:22,505
HEALTH EQUITY THROUGH PATIENT 

1087
00:39:22,505 --> 00:39:24,641
AND COMMUNITY ENGAGEMENT THAT 

1088
00:39:24,641 --> 00:39:26,309
DRIVES A CYCLE YOU SEE.

1089
00:39:26,309 --> 00:39:29,479
THE ENGAGEMENT CAN HELP ASK THE 

1090
00:39:29,479 --> 00:39:30,647
RESEARCH QUESTIONS RELEVANT TO 

1091
00:39:30,647 --> 00:39:32,515
PATIENTS AND COMMUNITIES.

1092
00:39:32,515 --> 00:39:34,951
AND WE CAN ALSO LEVERAGE A LOT 

1093
00:39:34,951 --> 00:39:36,486
OF TECHNOLOGICAL ADVANCES SUCH 

1094
00:39:36,486 --> 00:39:39,722
AS TRANSFORMATIONS AND DIGITAL 

1095
00:39:39,722 --> 00:39:42,992
HEALTH, WHICH ARE BRINGING 

1096
00:39:42,992 --> 00:39:44,460
MOBILE HEALTH AND HEALTH 

1097
00:39:44,460 --> 00:39:46,062
INFORMATION TECHNOLOGY AND 

1098
00:39:46,062 --> 00:39:46,696
ELECTRONIC HEALTH RECORDS TO 

1099
00:39:46,696 --> 00:39:47,630
BEAR FOR RESEARCH THAT CAN 

1100
00:39:47,630 --> 00:39:51,000
ENHANCE OUR ABILITY TO CONDUCT 

1101
00:39:51,000 --> 00:39:52,602
THE CLINICAL RESEARCH IN REAL 

1102
00:39:52,602 --> 00:39:53,736
WORLD SETTINGS MORE INTEGRATED 

1103
00:39:53,736 --> 00:39:55,905
INTO CLINICAL CARE.

1104
00:39:55,905 --> 00:39:58,775
THE MEANINGFUL ENGAGEMENT CAN 

1105
00:39:58,775 --> 00:40:01,044
ALSO HELP FACILITATE RECRUIT, 

1106
00:40:01,044 --> 00:40:02,245
AND RETENTION AND CLINICAL 

1107
00:40:02,245 --> 00:40:03,847
TRIALS OF POPULATIONS 

1108
00:40:03,847 --> 00:40:05,148
HISTORICALLY UNDER REPRESENTED 

1109
00:40:05,148 --> 00:40:07,984
IN RESEARCH AND ENHANCE THE 

1110
00:40:07,984 --> 00:40:08,952
GENERALIZABILITY OF RESEARCH 

1111
00:40:08,952 --> 00:40:11,988
RESULTS AND LIKELIHOOD OF THEIR 

1112
00:40:11,988 --> 00:40:13,957
UPTAKE AND IMPLEMENTATION INTO 

1113
00:40:13,957 --> 00:40:14,691
PRACTICE.

1114
00:40:14,691 --> 00:40:20,263
IN THE LONG TERM THIS CYCLE 

1115
00:40:20,263 --> 00:40:22,332
UNDERGIRDED WITH PATIENT 

1116
00:40:22,332 --> 00:40:24,367
ENGAGEMENT CAN SUSTAIN 

1117
00:40:24,367 --> 00:40:25,168
RELATIONSHIPS WITH COMMUNITIES 

1118
00:40:25,168 --> 00:40:27,070
AND PATIENTS AND THE TRUST FROM 

1119
00:40:27,070 --> 00:40:28,471
THOSE COMMUNITIES WHICH 

1120
00:40:28,471 --> 00:40:30,707
PERPETUATES THE CYCLE OF 

1121
00:40:30,707 --> 00:40:31,374
FACILITATING BETTER HEALTH 

1122
00:40:31,374 --> 00:40:32,342
OUTCOMES FOR ALL.

1123
00:40:32,342 --> 00:40:33,243
HOPEFULLY THIS VISION SEEMS LIKE

1124
00:40:33,243 --> 00:40:36,045
A GOOD PLACE TO END MY REMARKS 

1125
00:40:36,045 --> 00:40:37,847
TODAY AND I WANT TO GET TO THE 

1126
00:40:37,847 --> 00:40:39,949
LAST SLIDE AS I THANK YOU FOR 

1127
00:40:39,949 --> 00:40:41,117
ALL OF YOUR KIND ATTENTION 

1128
00:40:41,117 --> 00:40:42,785
BECAUSE I HOPE THAT I'VE PLANTED

1129
00:40:42,785 --> 00:40:45,989
A FEW SEEDS THAT WE CAN EXPLORE 

1130
00:40:45,989 --> 00:40:47,490
FURTHER IN THE Q&A SESSION
BUT I

1131
00:40:47,490 --> 00:40:48,758
ALSO WANT TO MENTION FEEL FREE 

1132
00:40:48,758 --> 00:40:50,860
TO ALSO JOIN US IN OUR ANNUAL 

1133
00:40:50,860 --> 00:40:51,928
MEETING LATER IN OCTOBER WHERE 

1134
00:40:51,928 --> 00:40:54,030
YOU CAN ALSO HAVE THE 

1135
00:40:54,030 --> 00:40:56,199
OPPORTUNITY TO ENGAGE WITH US 

1136
00:40:56,199 --> 00:40:57,267
AND THOSE WE SUPPORT.

1137
00:40:57,267 --> 00:40:58,301
THANK YOU FOR THE OPPORTUNITY TO

1138
00:40:58,301 --> 00:41:00,169
BE WITH YOU AND I'LL TURN IT 

1139
00:41:00,169 --> 00:41:02,005
BACK TO YOU, DR. ILIAS.

1140
00:41:02,005 --> 00:41:05,141
>> THANK YOU, SO MUCH, DR.
COOK 

1141
00:41:05,141 --> 00:41:06,509
FOR THAT EXCELLENT PRESENTATION 

1142
00:41:06,509 --> 00:41:09,379
OF PCORI'S ENGAGEMENT VISION AND

1143
00:41:09,379 --> 00:41:09,679
STRATEGIES.

1144
00:41:09,679 --> 00:41:12,548
YOU'VE HELPED US KICK OFF AN 

1145
00:41:12,548 --> 00:41:13,416
EXCELLENT PANEL.

1146
00:41:13,416 --> 00:41:16,286
SO DR. COOK WILL BE FOLLOWED BY 

1147
00:41:16,286 --> 00:41:19,589
DR. LIZ COHN.

1148
00:41:19,589 --> 00:41:22,659
MY COLLEAGUE WILL PULL UP HER 

1149
00:41:22,659 --> 00:41:22,959
SLIDES.

1150
00:41:22,959 --> 00:41:26,963
SHE'S THE VICE PRESIDENT FOR 

1151
00:41:26,963 --> 00:41:29,332
HEALTH EQUITY RESEARCH, SAUL 

1152
00:41:29,332 --> 00:41:31,768
KATZ CHAIR IN WOMEN'S HEALTH 

1153
00:41:31,768 --> 00:41:34,570
RESEARCH PROFESSOR AND FROM THE 

1154
00:41:34,570 --> 00:41:35,571
INSTITUTE OF HEALTH SYSTEMS 

1155
00:41:35,571 --> 00:41:37,573
SCIENCE FEINSTEIN INSTITUTES OF 

1156
00:41:37,573 --> 00:41:39,175
MEDICAL RESEARCH ZUCKER SCHOOL 

1157
00:41:39,175 --> 00:41:41,644
OF MEDICINE AND AN INTERNATIONAL

1158
00:41:41,644 --> 00:41:42,779
NURSE SCIENTIST WITH RECOGNITION

1159
00:41:42,779 --> 00:41:44,314
IN HEALTH EQUITY, PRECISION 

1160
00:41:44,314 --> 00:41:45,715
MEDICINE AND COMMUNITY-ENGAGED 

1161
00:41:45,715 --> 00:41:48,318
RESEARCH AND BEGAN HER CAREER 

1162
00:41:48,318 --> 00:41:51,254
WORKING AT NORTHSHORE UNIVERSITY

1163
00:41:51,254 --> 00:41:52,422
HOSPITAL IN EMERGENCY AND 

1164
00:41:52,422 --> 00:41:53,990
CRITICAL CARE FOR MORE THAN 25 

1165
00:41:53,990 --> 00:41:56,726
YEARS AND NAMED THE OBAMA WHITE 

1166
00:41:56,726 --> 00:41:58,027
HOUSE CHAMPION OF CHANGE IN 

1167
00:41:58,027 --> 00:41:59,562
PRECISION MEDICINE AND HEALTH 

1168
00:41:59,562 --> 00:42:00,797
EQUITY AND TODAY DR. COHN WILL 

1169
00:42:00,797 --> 00:42:03,299
TALK ABOUT THE SOON TO BE 

1170
00:42:03,299 --> 00:42:04,167
RELEASED THIRD EDITION THEIR 

1171
00:42:04,167 --> 00:42:05,902
TEXT ON THE PRINCIPLES OF 

1172
00:42:05,902 --> 00:42:07,470
COMMUNITY ENGAGEMENT.

1173
00:42:07,470 --> 00:42:10,440
DR. COHN, OVER TO YOU.

1174
00:42:10,440 --> 00:42:11,808
>> THANK YOU SO MUCH AND
THANK 

1175
00:42:11,808 --> 00:42:14,644
YOU DR. ELIAS FOR THE KIND 

1176
00:42:14,644 --> 00:42:15,945
INTRODUCTION AND DR. COOK FOR 

1177
00:42:15,945 --> 00:42:18,014
THE WORK YOU DO AT PCORI.

1178
00:42:18,014 --> 00:42:21,985
WE'RE SO VERY GRATEFUL FOR ALL 

1179
00:42:21,985 --> 00:42:23,019
OF THAT.

1180
00:42:23,019 --> 00:42:24,954
I'M ELIZABETH COHN THE VICE 

1181
00:42:24,954 --> 00:42:29,025
PRESIDENT FOR HEALTH EQUITY 

1182
00:42:29,025 --> 00:42:30,994
RESEARCH IN THE IRIS AND SAHL 

1183
00:42:30,994 --> 00:42:33,997
KATZ CHAIR FOR WOMEN'S HEALTH 

1184
00:42:33,997 --> 00:42:37,133
RESEARCH IN NEW YORK AND PROUD 

1185
00:42:37,133 --> 00:42:38,768
TO BE PART OF THE PANEL AND 

1186
00:42:38,768 --> 00:42:40,603
PRESENTATION ALONGSIDE MY FELLOW

1187
00:42:40,603 --> 00:42:40,837
SPEAKER.

1188
00:42:40,837 --> 00:42:43,539
I'VE HAD THE HONOR OF LEADING 

1189
00:42:43,539 --> 00:42:45,208
THE REVISION OF THE PRINCIPLES 

1190
00:42:45,208 --> 00:42:48,478
OF COMMUNITY ENGAGEMENT WITH 200

1191
00:42:48,478 --> 00:42:53,316
COMMUNITY MEMBERS AND ACADEMIC 

1192
00:42:53,316 --> 00:42:54,751
EXPERTS.

1193
00:42:54,751 --> 00:42:57,854
SO WE'VE JUST FINISHED REVIVING 

1194
00:42:57,854 --> 00:42:59,155
THE SEMINOLE TEXT.

1195
00:42:59,155 --> 00:43:02,625
THE TEXT ED BY THE CENTERS FOR 

1196
00:43:02,625 --> 00:43:04,327
DISEASE CONTROL AND PREVENTION 

1197
00:43:04,327 --> 00:43:08,131
AND THE AGENCY FOR TOXIC 

1198
00:43:08,131 --> 00:43:09,265
REGISTRY AND THE NIH, THE 

1199
00:43:09,265 --> 00:43:12,068
DEPARTMENT OF HEALTH AND HUMAN 

1200
00:43:12,068 --> 00:43:13,436
SERVICES AND IT REALLY GUIDES 

1201
00:43:13,436 --> 00:43:17,940
COMMUNITY ENGAGED RESEARCH AND 

1202
00:43:17,940 --> 00:43:20,743
COMMUNITY-ENGAGED WORK REALLY 

1203
00:43:20,743 --> 00:43:23,046
LIFTING UP WHAT DR. COOK JUST 

1204
00:43:23,046 --> 00:43:24,881
PRESENTED FROM PCORI AND OTHERS.

1205
00:43:24,881 --> 00:43:26,349
I'LL TAKE YOU BRIEFLY OVER THE 

1206
00:43:26,349 --> 00:43:28,785
LAST FOUR YEARS FROM TIME LINE 

1207
00:43:28,785 --> 00:43:30,787
TO FINISH LINE WITH A BRIEF 

1208
00:43:30,787 --> 00:43:32,555
HISTORY OF THE WORK DONE AND 

1209
00:43:32,555 --> 00:43:33,790
THEN TALK ABOUT SOME OF THE 

1210
00:43:33,790 --> 00:43:36,159
CHANGES THAT WE'VE MADE IN THIS 

1211
00:43:36,159 --> 00:43:36,392
BOOK.

1212
00:43:36,392 --> 00:43:43,566
IT'S REVISED EACH DECADE SO THIS

1213
00:43:43,566 --> 00:43:46,235
IS THE THIRD EDITION, 30th YEAR.

1214
00:43:46,235 --> 00:43:49,238
SO ACTUALLY COMMUNITY ENGAGEMENT

1215
00:43:49,238 --> 00:43:50,840
OVER ALL HAS ITS ROOTS IN 

1216
00:43:50,840 --> 00:43:51,641
ACTIVISM.

1217
00:43:51,641 --> 00:43:55,578
I WANT TO MENTION THIS RISES UP 

1218
00:43:55,578 --> 00:44:02,618
FROM AN EQUITY LENS AND ALWAYS 

1219
00:44:02,618 --> 00:44:03,286
HAS.

1220
00:44:03,286 --> 00:44:07,223
THIS PARTICULAR BOOKS WAS A 

1221
00:44:07,223 --> 00:44:08,791
FALLOUT FROM THE KEY FUNCTION 

1222
00:44:08,791 --> 00:44:11,828
COMMITTEE OF THE CLINICAL AND 

1223
00:44:11,828 --> 00:44:14,564
AWARD AT THE NATIONAL CENTER FOR

1224
00:44:14,564 --> 00:44:16,132
ADVANCING TRANSLATIONAL SCIENCE 

1225
00:44:16,132 --> 00:44:17,767
WHO IN 1996 PICKED UP THE 

1226
00:44:17,767 --> 00:44:18,634
PRINCIPLES OF COMMUNITY 

1227
00:44:18,634 --> 00:44:21,804
ENGAGEMENT FROM THE FIRST 

1228
00:44:21,804 --> 00:44:23,339
EDITION FROM THE CBC AND 

1229
00:44:23,339 --> 00:44:24,507
EXPANDED IT.

1230
00:44:24,507 --> 00:44:26,976
OVER THE LAST THREE DECADES WE 

1231
00:44:26,976 --> 00:44:32,515
HAVE EXPANDED IT FURTHER IN 

1232
00:44:32,515 --> 00:44:34,383
RECOGNITION OF THE IMPORTANCE 

1233
00:44:34,383 --> 00:44:35,985
THAT THE COMMUNITY INVOLVEMENT 

1234
00:44:35,985 --> 00:44:38,054
PLAYS IN THE ESSENTIAL ROLE TO 

1235
00:44:38,054 --> 00:44:42,091
IDENTIFY HEALTH CONCERNS AND 

1236
00:44:42,091 --> 00:44:42,425
INTERVENTIONS.

1237
00:44:42,425 --> 00:44:45,962
SO WE BUILD THIS UPON THE 

1238
00:44:45,962 --> 00:44:48,564
INITIAL WORK OF THE CDC AND THE 

1239
00:44:48,564 --> 00:44:50,433
EXPANDED WORK OF THE KEY 

1240
00:44:50,433 --> 00:44:52,568
FUNCTION COMMITTEES FROM NCATS 

1241
00:44:52,568 --> 00:44:59,542
AND NOW IT BECOMES A WORK THAT'S

1242
00:44:59,542 --> 00:45:01,077
INTERDEPARTMENTMENTAL AGENCIES 

1243
00:45:01,077 --> 00:45:02,345
ACROSS THE FEDERAL GOVERNMENT 

1244
00:45:02,345 --> 00:45:06,249
AND 200 ACADEMIC AND COMMUNITY 

1245
00:45:06,249 --> 00:45:06,649
PARTNERS.

1246
00:45:06,649 --> 00:45:10,019
BECAUSE OF THIS INTERAGENCY 

1247
00:45:10,019 --> 00:45:17,693
SUPPORT WE HAVE SECRETARY BERERA

1248
00:45:17,693 --> 00:45:22,398
WRITE THE FORWARD AND TO MAKE 

1249
00:45:22,398 --> 00:45:25,067
SURE IT'S SEEDED ACROSS ALL THE 

1250
00:45:25,067 --> 00:45:25,468
AGENCIES.

1251
00:45:25,468 --> 00:45:27,403
I WILL SAY EVERYONE WHO WORKED 

1252
00:45:27,403 --> 00:45:30,473
ON THIS 2024 EDITION DID SO AS A

1253
00:45:30,473 --> 00:45:30,773
VOLUNTEER.

1254
00:45:30,773 --> 00:45:32,942
THE PUBLICATION IS IN THE PUBLIC

1255
00:45:32,942 --> 00:45:35,044
DOMAIN AND IT IS AVAILABLE FOR 

1256
00:45:35,044 --> 00:45:37,580
FREE FOR DOWNLOAD AND CAN BE 

1257
00:45:37,580 --> 00:45:45,488
USED IN COPY WITHOUT PERMISSION.

1258
00:45:45,488 --> 00:45:50,159
JUST A LITTLE BIT OF ESTIMATED 

1259
00:45:50,159 --> 00:45:52,895
PAGE VIEWS AND DOWNLOADS.

1260
00:45:52,895 --> 00:45:57,867
WE VIEW THIS AND THE NON-ENGLISH

1261
00:45:57,867 --> 00:45:58,301
TRANSLATION.

1262
00:45:58,301 --> 00:46:01,404
IT'S AVAILABLE IN ENGLISH AND 

1263
00:46:01,404 --> 00:46:01,637
SPANISH.

1264
00:46:01,637 --> 00:46:04,407
IT'S USED ACROSS 50 COUNTRIES.

1265
00:46:04,407 --> 00:46:05,775
HERE'S THE TOP 150.

1266
00:46:05,775 --> 00:46:07,476
IT'S MOSTLY USED IN THE UNITED 

1267
00:46:07,476 --> 00:46:11,414
STATES BUT WE SEE USE ACROSS 

1268
00:46:11,414 --> 00:46:16,852
GLOBALLY AND THE REMAINING 40.

1269
00:46:16,852 --> 00:46:18,921
WOE GET A FEEL FOR THE FACT THAT

1270
00:46:18,921 --> 00:46:22,325
BOTH CHAPTERS AND THE BOOK 

1271
00:46:22,325 --> 00:46:25,461
ITSELF GETS DOWN YESTERDAYED 

1272
00:46:25,461 --> 00:46:27,697
GLOBALLY TO BE GUIDED BY SOME 

1273
00:46:27,697 --> 00:46:27,997
PRINCIPLES.

1274
00:46:27,997 --> 00:46:33,469
I WILL SAY THE BOOK IS DESIGN SO

1275
00:46:33,469 --> 00:46:34,570
CHAPTERS AND TOOLS WITHIN THE 

1276
00:46:34,570 --> 00:46:36,906
CHAPTER AND THE CHAPTER ITSELF 

1277
00:46:36,906 --> 00:46:38,107
DOWNLOAD INDIVIDUALLY SO YOU 

1278
00:46:38,107 --> 00:46:40,843
DON'T HAVE TO DOWNLOAD THE WHOLE

1279
00:46:40,843 --> 00:46:41,277
BOOK.

1280
00:46:41,277 --> 00:46:42,712
THAT'S IN RECOGNITION THAT 

1281
00:46:42,712 --> 00:46:43,713
LOW-RESOURCE COUNTRIES MAY NOT 

1282
00:46:43,713 --> 00:46:45,548
BE ABLE TO DOWNLOAD THE WHOLE 

1283
00:46:45,548 --> 00:46:47,083
BOCK AT ONCE OR MAY WANT A 

1284
00:46:47,083 --> 00:46:48,484
SINGLE CHAPTER.

1285
00:46:48,484 --> 00:46:49,752
WE DID MAKE EACH CHAPTER STAND 

1286
00:46:49,752 --> 00:46:56,359
ALONE.

1287
00:46:56,359 --> 00:46:58,261
WE STARTED IN 2020 WITH THE 

1288
00:46:58,261 --> 00:46:59,562
ORIGINAL AUTHORS OF THE CHAPTERS

1289
00:46:59,562 --> 00:47:02,865
TO SEE IF THEY WANTED TO ADD A 

1290
00:47:02,865 --> 00:47:04,934
COMMUNITY PARTNER AND REUPDATE 

1291
00:47:04,934 --> 00:47:08,871
THEIR CHAPTERS AND REFERENCES 

1292
00:47:08,871 --> 00:47:10,273
AND FELT A LITTLE BIT LIKE THIS 

1293
00:47:10,273 --> 00:47:11,340
NEW YORK CITY PICTURE.

1294
00:47:11,340 --> 00:47:12,775
WE WERE GOING IN DIFFERENT 

1295
00:47:12,775 --> 00:47:15,645
DIRECTIONS BUT MANAGED OVER TWO 

1296
00:47:15,645 --> 00:47:17,413
YEARS AND 250 AUTHORS LATER TO 

1297
00:47:17,413 --> 00:47:21,284
REVISE THE EDITION AND 

1298
00:47:21,284 --> 00:47:24,954
DR. BURMMAN FROM THE CDC 

1299
00:47:24,954 --> 00:47:27,757
SHEPHERDED THIS BOOK THROUGH THE

1300
00:47:27,757 --> 00:47:29,158
CLEARANCE PROCESS WHICH IS NOT 

1301
00:47:29,158 --> 00:47:29,725
SMALL TASK.

1302
00:47:29,725 --> 00:47:30,760
I'LL TALK ABOUT THE PROCESS AND 

1303
00:47:30,760 --> 00:47:33,129
A FEW SLIDES ON WHAT HAS CHANGED

1304
00:47:33,129 --> 00:47:39,902
OVER THE LAST DECADE.

1305
00:47:39,902 --> 00:47:44,340
SO FOR PROCESS WISE, WE DID 

1306
00:47:44,340 --> 00:47:46,709
CHAPTER AUTHOR CALLS MONTHLY AND

1307
00:47:46,709 --> 00:47:49,445
DID LARGE AND SMALL GROUP 

1308
00:47:49,445 --> 00:47:49,979
MEETINGS.

1309
00:47:49,979 --> 00:47:53,416
AND WE WORKED ON EACH CHAPTER.

1310
00:47:53,416 --> 00:47:55,618
WE HAD THESE CEMENTING MEETINGS 

1311
00:47:55,618 --> 00:47:58,321
WHERE WE TALKED ABOUT CORE 

1312
00:47:58,321 --> 00:47:59,388
PRINCIPLES WE WANTED TO CEMENT 

1313
00:47:59,388 --> 00:48:01,157
INTO THE FOUNDATION AND MEETINGS

1314
00:48:01,157 --> 00:48:02,591
TO INTEGRATE ACROSS THE 

1315
00:48:02,591 --> 00:48:02,858
CHAPTERS.

1316
00:48:02,858 --> 00:48:06,162
AND WE DID DO A NATIONAL CALL 

1317
00:48:06,162 --> 00:48:10,733
FOR THE EXEMPLARS FOR THE BOOK 

1318
00:48:10,733 --> 00:48:18,541
LED BY DJ McCUSKY WHO RECENTLY 

1319
00:48:18,541 --> 00:48:19,709
RETIRED FROM NURSING RESEARCH 

1320
00:48:19,709 --> 00:48:21,911
AND CREATED A NATIONAL 

1321
00:48:21,911 --> 00:48:22,611
APPLICATION AND SUBMISSION 

1322
00:48:22,611 --> 00:48:25,414
PROCESS AND IT WAS SENT OUT 

1323
00:48:25,414 --> 00:48:26,182
NATIONALLY AND WE HAD 

1324
00:48:26,182 --> 00:48:31,454
REPRESENTATION AS YOU CAN SEE ON

1325
00:48:31,454 --> 00:48:34,557
THIS SLIDE FROM MOREHOUSE 

1326
00:48:34,557 --> 00:48:35,391
MEDICINE AND CLINICAL RESEARCH 

1327
00:48:35,391 --> 00:48:37,693
AND VARIOUS FEDERAL AGENCIES.

1328
00:48:37,693 --> 00:48:38,928
WITH 250 PEOPLE I CAN'T START 

1329
00:48:38,928 --> 00:48:40,696
NAMING NAMES BUT I WILL TALK 

1330
00:48:40,696 --> 00:48:41,931
ABOUT SOME OF THE MODELS THAT 

1331
00:48:41,931 --> 00:48:51,741
HAVE BEEN REVISED.

1332
00:48:51,741 --> 00:48:55,311
SO NEW MODELS FOR ENGAGEMENT.

1333
00:48:55,311 --> 00:48:57,446
WHILE WE'VE HAD A LINEAR MODEL 

1334
00:48:57,446 --> 00:48:59,382
TO HELP PEOPLE CONCEPTUALIZE THE

1335
00:48:59,382 --> 00:49:00,950
LEVELS OF ENGAGEMENT CAN BE 

1336
00:49:00,950 --> 00:49:03,185
ACHIEVED AT WE OPTED FOR THIS 

1337
00:49:03,185 --> 00:49:04,920
MODEL FROM THE NATIONAL 

1338
00:49:04,920 --> 00:49:06,622
ACADEMIES OF MEDICINE THAT 

1339
00:49:06,622 --> 00:49:07,857
CENTERED COMMUNITY ENGAGEMENT 

1340
00:49:07,857 --> 00:49:09,625
AND THE CORE PRINCIPLES AROUND 

1341
00:49:09,625 --> 00:49:11,927
COMMUNITY ENGAGEMENT TO GUIDE 

1342
00:49:11,927 --> 00:49:12,328
THE WORK.

1343
00:49:12,328 --> 00:49:14,130
SO WE KNOW THAT THERE IS SOME 

1344
00:49:14,130 --> 00:49:15,898
SERVICE THAT CAN COME FROM THE 

1345
00:49:15,898 --> 00:49:19,135
LINEAR MODEL BUT IN PRACTICE WE 

1346
00:49:19,135 --> 00:49:20,503
ALSO LEARNED THAT IT ISN'T 

1347
00:49:20,503 --> 00:49:22,104
ALWAYS A LINEAR PROCESS.

1348
00:49:22,104 --> 00:49:24,774
SO WE THOUGHT CENTERING THE 

1349
00:49:24,774 --> 00:49:27,710
COMMUNITY VOICE USING THIS MODEL

1350
00:49:27,710 --> 00:49:30,813
AS OUR GO TO MODEL, OUR CONCRETE

1351
00:49:30,813 --> 00:49:32,782
MODEL FOR GUIDING THE BOOK CAN 

1352
00:49:32,782 --> 00:49:34,216
HELP US ACHIEVE BETTER, DEEPER 

1353
00:49:34,216 --> 00:49:39,422
COMMUNITY ENGAGEMENT.

1354
00:49:39,422 --> 00:49:42,091
SO WE EXPANDED THE DEFINITION.

1355
00:49:42,091 --> 00:49:44,894
IT HAS PREVIOUSLY BEEN AROUND 

1356
00:49:44,894 --> 00:49:46,195
GEOGRAPHIC CO-LOCATION OR SHARED

1357
00:49:46,195 --> 00:49:48,964
CONDITIONS AND WE KNOW THAT IN 

1358
00:49:48,964 --> 00:49:50,800
THIS VIRTUAL WORLD AND WITH THE 

1359
00:49:50,800 --> 00:49:53,569
CENTERED VOICE OF COMMUNITY, WE 

1360
00:49:53,569 --> 00:49:55,438
REVISED IT AND EXPANDED THE 

1361
00:49:55,438 --> 00:49:58,541
DEFINITION SO COMMUNITY 

1362
00:49:58,541 --> 00:50:00,810
ENGAGEMENT BUILDS SUSTAINABLE 

1363
00:50:00,810 --> 00:50:03,446
RELATIONSHIPS THROUGH TRUST AND 

1364
00:50:03,446 --> 00:50:04,046
COLLABORATION, STRENGTH AND 

1365
00:50:04,046 --> 00:50:04,747
COMMUNITY WELL BEING.

1366
00:50:04,747 --> 00:50:06,482
THE PROCESS HAVE YOU HAD BE 

1367
00:50:06,482 --> 00:50:07,883
ENDURING, EQUITABLE AND 

1368
00:50:07,883 --> 00:50:10,853
CULTURALLY SENSITIVE TO ALL 

1369
00:50:10,853 --> 00:50:13,055
PARTICIPANTS WITH A SHARED GOAL 

1370
00:50:13,055 --> 00:50:14,056
OF ADDRESSING THE CONCERNS OF 

1371
00:50:14,056 --> 00:50:15,758
THE COMMUNITY.

1372
00:50:15,758 --> 00:50:17,993
WE WANTED TO MAKE SURE OUR 

1373
00:50:17,993 --> 00:50:20,329
RESEARCH LEAVES THE COMMUNITY IN

1374
00:50:20,329 --> 00:50:22,965
BETTER SHAPE AND IS DRIVEN BY 

1375
00:50:22,965 --> 00:50:24,300
THEIR OWN NEEDS AND CONCERNS AS 

1376
00:50:24,300 --> 00:50:30,272
DR. COOK SAID.

1377
00:50:30,272 --> 00:50:32,174
AND THEN WE ARE PLEASED TO SAY 

1378
00:50:32,174 --> 00:50:36,645
OUR NINE GUIDING PRINCIPLES AGED

1379
00:50:36,645 --> 00:50:38,781
WELL SO WE KEPT THEM ALL.

1380
00:50:38,781 --> 00:50:39,815
THEY'RE AVAILABLE FOR FREE IN 

1381
00:50:39,815 --> 00:50:41,484
ENGLISH AND SPANISH IN THE BOOK.

1382
00:50:41,484 --> 00:50:42,985
I WON'T GO THROUGH ALL OF THEM 

1383
00:50:42,985 --> 00:50:46,055
BUT THEY'RE IN BEING CLEAR ABOUT

1384
00:50:46,055 --> 00:50:48,624
THE PURPOSE AND GOALS OF THE 

1385
00:50:48,624 --> 00:50:49,124
ENGAGEMENT.

1386
00:50:49,124 --> 00:50:50,493
UNDERSTANDING THE COMMUNITY THAT

1387
00:50:50,493 --> 00:50:53,362
YOU'RE IN, BUILDING AND 

1388
00:50:53,362 --> 00:50:55,831
MAINTAINING TRUST, KNOWING THAT 

1389
00:50:55,831 --> 00:50:57,633
SELF-DETERMINATION IS THE RIGHT 

1390
00:50:57,633 --> 00:50:59,201
OF THE PEOPLE IN THE COMMUNITY 

1391
00:50:59,201 --> 00:51:02,404
AND BEING IN PARTNERSHIP WITH 

1392
00:51:02,404 --> 00:51:03,939
EQUAL BALANCE OF POWER.

1393
00:51:03,939 --> 00:51:07,810
TAKING AN ASSET-BASED APPROACH 

1394
00:51:07,810 --> 00:51:09,011
AND RECOGNIZING THE STRENGTHS OF

1395
00:51:09,011 --> 00:51:10,980
THE COMMUNITY AND WHAT THEY 

1396
00:51:10,980 --> 00:51:11,180
BRING.

1397
00:51:11,180 --> 00:51:13,749
RECOGNIZING INDIVIDUALS AND 

1398
00:51:13,749 --> 00:51:15,551
INSTITUTIONS SHOULD BE PREPARED 

1399
00:51:15,551 --> 00:51:17,853
FOR THIS POWER DIFFERENTIAL AND 

1400
00:51:17,853 --> 00:51:19,121
DEMONSTRATING TRUST AND 

1401
00:51:19,121 --> 00:51:19,989
TRUSTWORTHINESS WHICH IS THE ONE

1402
00:51:19,989 --> 00:51:25,227
WE ADDED.

1403
00:51:25,227 --> 00:51:27,863
AND WE ADDED ADDITIONAL MODELS.

1404
00:51:27,863 --> 00:51:30,165
THERE'S ALWAYS BEEN SOME 

1405
00:51:30,165 --> 00:51:31,500
QUESTION ABOUT THE MEASUREMENT 

1406
00:51:31,500 --> 00:51:36,305
AND METRICS AROUND COMMUNITY 

1407
00:51:36,305 --> 00:51:37,973
ENGAGEMENT AND EQUITY AND 

1408
00:51:37,973 --> 00:51:38,507
DISSEMINATION AND 

1409
00:51:38,507 --> 00:51:39,141
IMPLEMENTATION.

1410
00:51:39,141 --> 00:51:41,710
SO THROUGH THE WORK OF 

1411
00:51:41,710 --> 00:51:46,916
DR. SHELTON AND DOCTORS, 

1412
00:51:46,916 --> 00:51:50,553
ACINTOBE AND CAMPOS AND ALSO A 

1413
00:51:50,553 --> 00:51:52,721
FABULOUS MODEL BY 

1414
00:51:52,721 --> 00:51:55,624
DR. WALLERSTEIN WE ADDED MODELS 

1415
00:51:55,624 --> 00:51:58,360
FOR IMPLEMENTATION AND 

1416
00:51:58,360 --> 00:51:59,395
DISSEMINATION, PROGRAM 

1417
00:51:59,395 --> 00:51:59,895
EVALUATION AND PROCESS 

1418
00:51:59,895 --> 00:52:04,400
EVALUATION.

1419
00:52:04,400 --> 00:52:06,135
SO THE BOOK IS SET FOR RELEASE 

1420
00:52:06,135 --> 00:52:06,802
IN THE FALL.

1421
00:52:06,802 --> 00:52:09,672
I WILL SAY THAT WE HAVE DONE 

1422
00:52:09,672 --> 00:52:14,209
SOME INCREDIBLE WORK AROUND 

1423
00:52:14,209 --> 00:52:16,412
INTEGRATING THE PATIENT AND 

1424
00:52:16,412 --> 00:52:18,247
PARTICIPANT VOICE INTO STRATEGIC

1425
00:52:18,247 --> 00:52:19,915
PLANS FOR RESEARCH ROAD MAPS 

1426
00:52:19,915 --> 00:52:22,484
SUCH AS IN THE ALL OF US 

1427
00:52:22,484 --> 00:52:24,286
RESEARCH PROGRAM WHERE WE'VE 

1428
00:52:24,286 --> 00:52:26,755
BEEN ABLE TO DO NATIONAL 

1429
00:52:26,755 --> 00:52:27,957
TOURISTS TAKING THE SCIENTIFIC 

1430
00:52:27,957 --> 00:52:29,191
ROAD MAP FROM PROGRAMS LIKE THAT

1431
00:52:29,191 --> 00:52:32,528
AND MAKING SURE THAT THEY 

1432
00:52:32,528 --> 00:52:33,596
REFLECT COMMUNITY PRIORITIES AND

1433
00:52:33,596 --> 00:52:35,064
THE INTEREST OF COMMUNITIES AT 

1434
00:52:35,064 --> 00:52:38,767
THE SAME TIME AS DR. COOK SAID, 

1435
00:52:38,767 --> 00:52:39,435
GARNERING SUPPORT FOR THE 

1436
00:52:39,435 --> 00:52:41,937
RESEARCH AND PROGRAM AND MAKING 

1437
00:52:41,937 --> 00:52:43,172
SURE THAT IT'S APPLICABLE.

1438
00:52:43,172 --> 00:52:46,375
I THANK EVERYONE FOR THE TIME.

1439
00:52:46,375 --> 00:52:47,876
I'M GRATEFUL TO BE A PART OF THE

1440
00:52:47,876 --> 00:52:49,545
PANEL AND LOOK FORWARD TO THE 

1441
00:52:49,545 --> 00:52:55,684
DISCUSSION AFTERWARDS.

1442
00:52:55,684 --> 00:52:57,119
>> THANK YOU SO MUCH, LIZ.

1443
00:52:57,119 --> 00:52:57,786
THIS WAS AN EXCELLENT 

1444
00:52:57,786 --> 00:52:59,555
PRESENTATION AND WE'RE EXCITED 

1445
00:52:59,555 --> 00:53:02,257
FOR THE RELEASE OF THIS BOOK.

1446
00:53:02,257 --> 00:53:04,493
IT'S BEEN QUITE AN EFFORT IN THE

1447
00:53:04,493 --> 00:53:06,195
MAKING OF THIS THIRD EDITION.

1448
00:53:06,195 --> 00:53:07,296
THANK YOU FOR SHARING THAT WITH 

1449
00:53:07,296 --> 00:53:07,463
US.

1450
00:53:07,463 --> 00:53:09,431
NOW IT'S MY HONOR TO PRESENT OUR

1451
00:53:09,431 --> 00:53:11,634
FINAL PANELISTS WHO ARE DEAR 

1452
00:53:11,634 --> 00:53:13,369
COLLEAGUES OF MINE AND ARE THE 

1453
00:53:13,369 --> 00:53:15,037
PRINCIPLE INVESTIGATORS OF THE 

1454
00:53:15,037 --> 00:53:21,744
COMMUNITY ENGAGEMENT ALLIANCE 

1455
00:53:21,744 --> 00:53:25,147
CONSULTATIVE RESEARCH, DR. MAS 

1456
00:53:25,147 --> 00:53:30,419
SARTRE AND SHE'S A PROFESSOR OF 

1457
00:53:30,419 --> 00:53:32,087
CLINICAL AND TRANSLATIONAL 

1458
00:53:32,087 --> 00:53:32,921
SCIENCE INSTITUTE AND SHE 

1459
00:53:32,921 --> 00:53:34,256
CURRENTLY SERVED AS THE FOUNDER 

1460
00:53:34,256 --> 00:53:36,358
AND MEDICAL DIRECTOR OF THE 

1461
00:53:36,358 --> 00:53:37,826
UNIVERSITY OF PITTSBURGH MEDICAL

1462
00:53:37,826 --> 00:53:40,829
CENTER PRIMARY CARE PRECISION 

1463
00:53:40,829 --> 00:53:41,397
MEDICINE CLINIC AND AS THE 

1464
00:53:41,397 --> 00:53:45,167
ASSOCIATE DIRECTOR OF CLINICAL 

1465
00:53:45,167 --> 00:53:46,402
SERVICES FOR THE INSTITUTE FOR 

1466
00:53:46,402 --> 00:53:48,070
PRECISION MEDICINE AND 

1467
00:53:48,070 --> 00:53:49,204
INTERESTED IN DEVELOPING 

1468
00:53:49,204 --> 00:53:50,739
PRECISION MEDICINE FOR PRIMARY 

1469
00:53:50,739 --> 00:53:54,710
CARE PROVIDERS AND TRAINEES AND 

1470
00:53:54,710 --> 00:53:57,813
BEING A RESEARCH CATALYST 

1471
00:53:57,813 --> 00:53:59,815
REPRESENTING UNDER SERVED 

1472
00:53:59,815 --> 00:54:00,683
POPULATIONS IN BIOMEDICAL 

1473
00:54:00,683 --> 00:54:02,584
RESEARCH AND TEACHES RESIDENTS 

1474
00:54:02,584 --> 00:54:05,954
AT HER CLINIC AND HOSPITAL AND 

1475
00:54:05,954 --> 00:54:09,658
SERVES AS DIRECTOR AT BETHANY 

1476
00:54:09,658 --> 00:54:13,462
HOSPICE AND DR. RICHMOND SHARES 

1477
00:54:13,462 --> 00:54:18,267
A ROLE WITH THE EXECUTIVE 

1478
00:54:18,267 --> 00:54:19,568
DIRECTOR OF COMMUNITY CAMPUS 

1479
00:54:19,568 --> 00:54:21,270
DIRECTIVE AND ADVOCATING FOR THE

1480
00:54:21,270 --> 00:54:23,205
INCREASED ROLE OF COMMUNITIES 

1481
00:54:23,205 --> 00:54:24,873
AND RESEARCH IN PUBLIC HEALTH 

1482
00:54:24,873 --> 00:54:28,143
AND IN THE ROLE OF EXECUTIVE 

1483
00:54:28,143 --> 00:54:30,446
DIRECTOR HE'S ADVANCING THE 

1484
00:54:30,446 --> 00:54:31,580
ORGANIZATION'S COMMITMENT TO 

1485
00:54:31,580 --> 00:54:32,881
SOCIAL JUSTICE AND HEALTH 

1486
00:54:32,881 --> 00:54:33,248
EQUITY.

1487
00:54:33,248 --> 00:54:34,883
HE SERVED AS THE PRINCIPLE 

1488
00:54:34,883 --> 00:54:36,485
INVESTIGATOR OF PATIENT 

1489
00:54:36,485 --> 00:54:38,887
ENGAGEMENT ENHANCING CULTURAL 

1490
00:54:38,887 --> 00:54:40,656
RESPONSIVENESS RESEARCH FUNDED 

1491
00:54:40,656 --> 00:54:43,425
BY PCORI AND AS A CO-PRINCIPLE 

1492
00:54:43,425 --> 00:54:45,127
INVESTIGATOR OF ENSURING ETHICAL

1493
00:54:45,127 --> 00:54:47,096
COMMUNITY ENGAGED RESEARCH 

1494
00:54:47,096 --> 00:54:49,331
ELEVATING THE ROLE AND IMPACT OF

1495
00:54:49,331 --> 00:54:50,132
COMMUNITY-BASED IRBs AND 

1496
00:54:50,132 --> 00:54:51,567
RESEARCH REVIEW COMMITTEES 

1497
00:54:51,567 --> 00:54:53,068
FUNDED BY THE NATIONAL INSTITUTE

1498
00:54:53,068 --> 00:54:54,470
OF MINORITY HEALTH AND HEALTH 

1499
00:54:54,470 --> 00:54:54,770
DISPARITIES.

1500
00:54:54,770 --> 00:54:59,108
HE HOLDS A MASTER'S OF SOCIAL 

1501
00:54:59,108 --> 00:55:00,375
WORK FROM THE OHIO STATE 

1502
00:55:00,375 --> 00:55:00,676
UNIVERSITY.

1503
00:55:00,676 --> 00:55:03,145
SHALE SHARE LESSONS LEARNED 

1504
00:55:03,145 --> 00:55:04,146
AROUND MEANINGFUL COMMUNITY 

1505
00:55:04,146 --> 00:55:05,681
ENGAGEMENT AND RESEARCH.

1506
00:55:05,681 --> 00:55:06,915
THE PANEL DISCUSSION WILL 

1507
00:55:06,915 --> 00:55:08,450
CONCLUDE WITH A Q&A SESSION 

1508
00:55:08,450 --> 00:55:09,418
MODERATED BY MYSELF.

1509
00:55:09,418 --> 00:55:15,858
WITH THAT I'LL HAND IT OVER TO 

1510
00:55:15,858 --> 00:55:26,135
AL AND MYLYNDA.

1511
00:55:26,335 --> 00:55:30,272
>> I'M PART OF THE CAMPUS 

1512
00:55:30,272 --> 00:55:32,207
COMMUNITY FOR HEALTH AND YOU'LL 

1513
00:55:32,207 --> 00:55:33,342
HEAR FROM DR. MASSART SHORTLY.

1514
00:55:33,342 --> 00:55:35,544
I WANT TO ACKNOWLEDGE THE 

1515
00:55:35,544 --> 00:55:38,680
LECTURE BY DR. COOK AND DR. COHN

1516
00:55:38,680 --> 00:55:40,215
AND FROM THAT IT HAS ALLOWED ME 

1517
00:55:40,215 --> 00:55:42,351
TO THINK ABOUT HOW TO MOVE INTO 

1518
00:55:42,351 --> 00:55:44,052
THIS THIRD PRESENTATION THIS 

1519
00:55:44,052 --> 00:55:46,288
AFTERNOON AND WHAT I HEARD WAS A

1520
00:55:46,288 --> 00:55:52,060
LOT ABOUT THE SCIENCE OF WHAT WE

1521
00:55:52,060 --> 00:55:59,935
KNOW AND I RECALL RESEARCHERS 

1522
00:55:59,935 --> 00:56:10,345
AND TEAMS HAVE TROUBLE 

1523
00:56:12,114 --> 00:56:13,749
IMPLEMENTING AND CEACR PROVIDES 

1524
00:56:13,749 --> 00:56:16,485
PRACTICAL STRATEGIES AND 

1525
00:56:16,485 --> 00:56:17,586
RESOURCES TO RESEARCH TEAMS TO 

1526
00:56:17,586 --> 00:56:20,422
HOW TO DO THE WORK OF COMMUNITY 

1527
00:56:20,422 --> 00:56:20,756
ENGAGEMENT.

1528
00:56:20,756 --> 00:56:26,762
PULLING TOGETHER ALL THE LESSONS

1529
00:56:26,762 --> 00:56:31,533
THAT WE KNOW WORK BEST PRACTICES

1530
00:56:31,533 --> 00:56:32,501
AND YOU'LL HEAR THIS AFTERNOON 

1531
00:56:32,501 --> 00:56:39,641
HOW WE'RE DOING THAT.

1532
00:56:39,641 --> 00:56:42,277
CEACR IS AN INITIATIVE OF THE 

1533
00:56:42,277 --> 00:56:44,112
NATIONAL INSTITUTES OF HEALTH 

1534
00:56:44,112 --> 00:56:47,482
COMMUNITY ENGAGEMENT OR CELE 

1535
00:56:47,482 --> 00:56:53,288
ESTABLISHED BY THE 2020 AT THE 

1536
00:56:53,288 --> 00:56:56,425
HEIGHT OF THE PANDEMIC AND WE 

1537
00:56:56,425 --> 00:57:01,463
SUPPORT CELE AND RESEARCH TEAMS.

1538
00:57:01,463 --> 00:57:05,434
OUR MISSION IS TO APPLY 

1539
00:57:05,434 --> 00:57:07,236
PRINCIPLES OF RESEARCH AND 

1540
00:57:07,236 --> 00:57:09,671
INCLUSIVE PARTICIPATION TO 

1541
00:57:09,671 --> 00:57:10,572
PROMOTE HEALTH EQUITY AND 

1542
00:57:10,572 --> 00:57:15,744
RESEARCH RECIPROCITY.

1543
00:57:15,744 --> 00:57:22,017
OUR OBJECTIVES ARE TO USE A 

1544
00:57:22,017 --> 00:57:24,086
PANEL OF COMMUNITY AND ACADEMIC 

1545
00:57:24,086 --> 00:57:25,354
LEADERS AND WE'LL DESCRIBE HOW 

1546
00:57:25,354 --> 00:57:26,321
WE DO THAT.

1547
00:57:26,321 --> 00:57:29,091
SHARE COMMUNITY-CENTERED 

1548
00:57:29,091 --> 00:57:31,326
PRACTICES THAT ENCOURAGE 

1549
00:57:31,326 --> 00:57:32,694
RESEARCH RECIPROCITY THE 

1550
00:57:32,694 --> 00:57:35,831
CORNERSTONE OF OR WORK WITHIN 

1551
00:57:35,831 --> 00:57:39,801
ACADEMIC COLLABORATIONS AN 

1552
00:57:39,801 --> 00:57:41,603
ASSIST RESEARCH TEAMS INCREASING

1553
00:57:41,603 --> 00:57:43,705
THEIR TRUSTWORTHINESS AND YOU 

1554
00:57:43,705 --> 00:57:45,908
HEARD A LOT ABOUT 

1555
00:57:45,908 --> 00:57:46,909
TRUSTWORTHINESS FROM DR. COHN 

1556
00:57:46,909 --> 00:57:50,178
AND DR. COOK AND THEN FINALLY TO

1557
00:57:50,178 --> 00:57:51,446
ADVOCATE FOR AND PROVIDE 

1558
00:57:51,446 --> 00:57:52,981
EDUCATION USING 

1559
00:57:52,981 --> 00:57:53,682
COMMUNITY-PARTNERED RESEARCH TO 

1560
00:57:53,682 --> 00:57:54,449
ADDRESS HEALTH DISPARITIES AND 

1561
00:57:54,449 --> 00:58:02,424
INEQUITIES.

1562
00:58:02,424 --> 00:58:04,159
TO THE WORK IS BEST THOUGHT 

1563
00:58:04,159 --> 00:58:07,996
ABOUT ON A TWO-PRONG APPROACH.

1564
00:58:07,996 --> 00:58:10,766
ON THE ONE HAND WE ARE ENGAGED 

1565
00:58:10,766 --> 00:58:14,269
IN WHAT WE DESCRIBE AS EPISODIC 

1566
00:58:14,269 --> 00:58:14,937
SERVICES.

1567
00:58:14,937 --> 00:58:17,839
THOSE ARE ONE-TIME CONSULTS FOR 

1568
00:58:17,839 --> 00:58:21,176
CLIENTS SEEKING ANSWERS TO A 

1569
00:58:21,176 --> 00:58:23,145
SPECIFIC PROBLEM, ASSET REQUEST 

1570
00:58:23,145 --> 00:58:25,047
OR A TOOLKIT.

1571
00:58:25,047 --> 00:58:28,317
AND SO USING THE EPISODIC 

1572
00:58:28,317 --> 00:58:29,718
APPROACH WE PROVIDE EXPERT 

1573
00:58:29,718 --> 00:58:31,320
PANELS WHICH ARE AMAZING GROUPS 

1574
00:58:31,320 --> 00:58:34,122
OF BOTH ACADEMIC AND COMMUNITY 

1575
00:58:34,122 --> 00:58:36,124
EXPERTS WHO HAVE BROUGHT 

1576
00:58:36,124 --> 00:58:39,528
TOGETHER TO PROVIDE CONSULTATION

1577
00:58:39,528 --> 00:58:41,663
TO A RESEARCH TEAM.

1578
00:58:41,663 --> 00:58:43,732
THE WORK ALSO INCLUDES ASSET 

1579
00:58:43,732 --> 00:58:45,334
REQUEST WHEREIN WE CAN WORK WITH

1580
00:58:45,334 --> 00:58:50,272
THE TEAM TO DEVELOP ASSET 

1581
00:58:50,272 --> 00:58:53,308
RESOURCES AND THEN FINALLY TO 

1582
00:58:53,308 --> 00:58:57,145
PROVIDE OTS OR OFFICE THE SHELF 

1583
00:58:57,145 --> 00:58:58,814
TOOL KITS WHICH ARE BEST 

1584
00:58:58,814 --> 00:59:00,015
PRACTICES THE DOCUMENTATION OF 

1585
00:59:00,015 --> 00:59:01,550
BEST PRACTICES SHARED NOT ONLY 

1586
00:59:01,550 --> 00:59:02,451
WITH THEM BUT OTHER TEAMS AS 

1587
00:59:02,451 --> 00:59:07,456
WELL.

1588
00:59:07,456 --> 00:59:09,758
THE SECOND APPROACH TO OUR WORK 

1589
00:59:09,758 --> 00:59:12,561
IS THAT OF LONGITUDINAL.

1590
00:59:12,561 --> 00:59:16,331
EPISODIC IS ONE TIME OR SHORT 

1591
00:59:16,331 --> 00:59:17,599
TERM.

1592
00:59:17,599 --> 00:59:20,469
LONGITUDINAL CONSULTS ARE MORE 

1593
00:59:20,469 --> 00:59:21,570
EXTENDED CONSULTS FOR CLIENTS 

1594
00:59:21,570 --> 00:59:24,573
SEEKING ANSWERS TO A LARGER MORE

1595
00:59:24,573 --> 00:59:27,709
COMPLEX ISSUE AND THEY NEED OUR 

1596
00:59:27,709 --> 00:59:29,311
SUPPORT AND ASSISTANCE ON A 

1597
00:59:29,311 --> 00:59:30,479
LONG-TERM BASIS.

1598
00:59:30,479 --> 00:59:33,949
AS PART OF OUR LONGITUDINAL 

1599
00:59:33,949 --> 00:59:35,484
SUPPORT WE PROVIDE EXPERT PANELS

1600
00:59:35,484 --> 00:59:39,121
SIMILAR TO THE EPISODIC CONSULTS

1601
00:59:39,121 --> 00:59:42,557
AND REVIEW OF RECRUITMENT 

1602
00:59:42,557 --> 00:59:43,525
OUTREACH MATERIALS.

1603
00:59:43,525 --> 00:59:46,595
WE PROVIDE COMMUNITY LISTENING 

1604
00:59:46,595 --> 00:59:48,897
SESSIONS AND KEY INTERVIEWS, 

1605
00:59:48,897 --> 00:59:51,066
COMMUNITY ENGAGED RESEARCH 

1606
00:59:51,066 --> 00:59:55,070
TRAININGS AND THEN FINALLY 

1607
00:59:55,070 --> 00:59:55,804
CUSTOMIZED WEBINAR SERIES OR 

1608
00:59:55,804 --> 01:00:03,578
TRAINING SESSIONS.

1609
01:00:03,578 --> 01:00:05,614
EXPERTS PANELS, THIS IS A 

1610
01:00:05,614 --> 01:00:07,482
DELIGHT TO DESCRIBE FOR US 

1611
01:00:07,482 --> 01:00:08,683
BECAUSE THIS IS THE HEART AND 

1612
01:00:08,683 --> 01:00:12,054
SOUL OF OUR WORK TO CONVENE AND 

1613
01:00:12,054 --> 01:00:14,189
CURATE EXPERT PANELS WHICH ARE 

1614
01:00:14,189 --> 01:00:15,190
COMPRISED OF COMMUNITY MEMBERS 

1615
01:00:15,190 --> 01:00:17,692
AND ACADEMIC PARTNERS FROM 

1616
01:00:17,692 --> 01:00:20,796
ACROSS THE U.S. WHO HAVE A 

1617
01:00:20,796 --> 01:00:22,330
VARIETY OF EXPERTISE BOTH LIVED 

1618
01:00:22,330 --> 01:00:23,865
EXPERIENCE AS WELL AS ACADEMIC 

1619
01:00:23,865 --> 01:00:24,766
RESEARCH EXPERIENCE.

1620
01:00:24,766 --> 01:00:28,103
THESE SESSIONS ARE RECORDED AND 

1621
01:00:28,103 --> 01:00:37,145
TRANSCRIBED TO USE TECHNIQUES TO

1622
01:00:37,145 --> 01:00:42,384
EX  PROVIDE RECOMMENDATIONS.

1623
01:00:42,384 --> 01:00:44,986
THE WORK OF OUR EXPERT PANELS IS

1624
01:00:44,986 --> 01:00:47,355
SIMILAR TO COMMUNITY ENGAGEMENT 

1625
01:00:47,355 --> 01:00:49,791
STUDIOS MANY ARE FAMILIAR WITH 

1626
01:00:49,791 --> 01:00:52,461
THAT HAVE BEEN PROMULGATED FOR 

1627
01:00:52,461 --> 01:00:54,930
THE PAST FEW YEARS IN 

1628
01:00:54,930 --> 01:00:56,331
PARTICULARLY AMONG OUR CTSA 

1629
01:00:56,331 --> 01:01:02,070
PARTNERS.

1630
01:01:02,070 --> 01:01:04,206
THE WORK TO BETTER UNDERSTAND IT

1631
01:01:04,206 --> 01:01:07,142
I'LL SHARE EXAMPLES OF TOPICS 

1632
01:01:07,142 --> 01:01:10,445
THAT WE HAVE WORKED ON FOR THE 

1633
01:01:10,445 --> 01:01:12,280
PAST TWO AND A HALF YEARS WHO 

1634
01:01:12,280 --> 01:01:14,950
REVIEWED POPULATION SPECIFIC 

1635
01:01:14,950 --> 01:01:17,686
ENGAGEMENT MATERIALS AND HELP IN

1636
01:01:17,686 --> 01:01:19,020
SUPPORTING THE SERIES OF DURABLE

1637
01:01:19,020 --> 01:01:20,522
RESOURCES FOR FORMER APPLICANTS 

1638
01:01:20,522 --> 01:01:22,591
TO A COMMUNITY-PARTNER RESEARCH 

1639
01:01:22,591 --> 01:01:22,791
GRANT.

1640
01:01:22,791 --> 01:01:27,195
WE SUPPORTED THE DEVELOPMENT OF 

1641
01:01:27,195 --> 01:01:29,030
PARTICIPANT APPRECIATION 

1642
01:01:29,030 --> 01:01:30,298
PRACTICES FOR STEADY CLOSURE AND

1643
01:01:30,298 --> 01:01:32,167
SUPPORTED THE DEVELOPMENT OF 

1644
01:01:32,167 --> 01:01:34,669
COMMUNITY LISTENING SESSIONS 

1645
01:01:34,669 --> 01:01:35,871
FOCUSSED ON A SPECIFIC RESEARCH 

1646
01:01:35,871 --> 01:01:36,204
TOPIC.

1647
01:01:36,204 --> 01:01:38,974
THE TOPICS WE HAVE ADDRESSED AND

1648
01:01:38,974 --> 01:01:41,977
SUPPORTED HAVE INCLUDED COVID, 

1649
01:01:41,977 --> 01:01:44,346
MATERNAL HEALTH, PEDIATRIC DOWN 

1650
01:01:44,346 --> 01:01:49,050
SYNDROME AND MANY MORE AND 

1651
01:01:49,050 --> 01:01:50,752
FACILITATING PROMOTING IDEAS AND

1652
01:01:50,752 --> 01:01:51,286
ALIGNMENT THROUGHOUT THE 

1653
01:01:51,286 --> 01:01:55,657
RESEARCH PRFG.

1654
01:01:55,657 --> 01:01:56,158
-- PROCESS.

1655
01:01:56,158 --> 01:01:58,460
AN EXCITING PART OF OUR WORK IS 

1656
01:01:58,460 --> 01:01:59,494
THE EVALUATION.

1657
01:01:59,494 --> 01:02:01,830
WE LOOK AT THE EVALUATION OF 

1658
01:02:01,830 --> 01:02:03,565
MANY DIFFERENT LEVELS.

1659
01:02:03,565 --> 01:02:05,167
IN PARTICULAR WE FOCUS ON 

1660
01:02:05,167 --> 01:02:06,868
PROFESSION EVALUATION WHICH IS 

1661
01:02:06,868 --> 01:02:08,970
THE HOW WE DO OUR WORK AND WANT 

1662
01:02:08,970 --> 01:02:10,772
TO MAKE SURE OUR CLIENTS, OUR 

1663
01:02:10,772 --> 01:02:13,542
CUSTOMERS ARE SATISFIED SO WE 

1664
01:02:13,542 --> 01:02:14,576
ADMINISTER SATISFACTION SERVICES

1665
01:02:14,576 --> 01:02:21,716
THAT HAVE BEEN ADJUSTED TO CEACR

1666
01:02:21,716 --> 01:02:23,018
PROCESS AND HAVE DASH BOARDS AND

1667
01:02:23,018 --> 01:02:23,919
IMPACT EVALUATIONS.

1668
01:02:23,919 --> 01:02:25,887
IT'S IMPORTANT FOR US TO REALLY 

1669
01:02:25,887 --> 01:02:28,123
UNDERSTAND WHAT IMPACT HAS OUR 

1670
01:02:28,123 --> 01:02:29,491
CONSULTATION PROVIDED TO THE 

1671
01:02:29,491 --> 01:02:29,891
TEAM.

1672
01:02:29,891 --> 01:02:32,093
WHAT DIFFERENCE HAVE WE MADE.

1673
01:02:32,093 --> 01:02:35,797
SO WE SUPPORT THEM IN PROVIDING 

1674
01:02:35,797 --> 01:02:38,500
IMPACT EVALUATIONS ON A 30, 90 

1675
01:02:38,500 --> 01:02:42,003
AND 180 DAYS POST-CONSULT AND 

1676
01:02:42,003 --> 01:02:43,271
FINALLY WHAT YOU'LL HEAR MORE 

1677
01:02:43,271 --> 01:02:46,875
ABOUT IS OUR PRE VISION OUTREACH

1678
01:02:46,875 --> 01:02:48,944
TOOLS.

1679
01:02:48,944 --> 01:02:51,846
I'LL PASS ON TO DR. MASSART.

1680
01:02:51,846 --> 01:02:52,781
>> THANK YOU, AL.

1681
01:02:52,781 --> 01:02:57,452
LET'S GO AHEAD AND ADVANCE TO 

1682
01:02:57,452 --> 01:02:59,187
THE NEXT SLIDE.

1683
01:02:59,187 --> 01:03:04,893
SO THIS SLIDE IS FEATURING OUR 

1684
01:03:04,893 --> 01:03:06,494
CEACR EVIDENCE OF IMPACT MODEL 

1685
01:03:06,494 --> 01:03:09,064
BUILT AND MODIFIED FROM THE 

1686
01:03:09,064 --> 01:03:12,234
PREVIOUSLY PUBLISHED EVIDENCE IN

1687
01:03:12,234 --> 01:03:14,669
2019 AND THIS WAS A WAY FOR US 

1688
01:03:14,669 --> 01:03:17,739
TO REALLY START TO EVALUATE THE 

1689
01:03:17,739 --> 01:03:19,174
QUALITATIVE WORK IN A WAY THAT 

1690
01:03:19,174 --> 01:03:22,811
WAS SLIGHTLY MORE QUANTITATIVE 

1691
01:03:22,811 --> 01:03:28,850
WHERE WE AS AL EXPLAINED HAVE 

1692
01:03:28,850 --> 01:03:29,618
PANELS AND COLLECTED 

1693
01:03:29,618 --> 01:03:30,885
RECOMMENDATIONS FROM OUR 

1694
01:03:30,885 --> 01:03:32,654
PANELISTS TO OUR RESEARCH 

1695
01:03:32,654 --> 01:03:32,954
CONSULTEES.

1696
01:03:32,954 --> 01:03:35,590
WHICH ON THE LEVEL OF IMPACT 

1697
01:03:35,590 --> 01:03:40,061
SCORE INHERENTLY AT A LEVEL TO 

1698
01:03:40,061 --> 01:03:41,930
SITUATED LEARNING WHERE WE ASKED

1699
01:03:41,930 --> 01:03:43,932
EXPERTS QUESTIONS AND THEY 

1700
01:03:43,932 --> 01:03:47,602
RESPONDED WITH THEIR BEST 

1701
01:03:47,602 --> 01:03:48,003
ADVICE.

1702
01:03:48,003 --> 01:03:51,640
WE FOLLOW CONSULTEES WITH 

1703
01:03:51,640 --> 01:03:54,075
SURVEYS AT 30, 90 AND 180 DAYS 

1704
01:03:54,075 --> 01:03:56,278
TO SEE WHAT THE RESEARCH TEAMS 

1705
01:03:56,278 --> 01:03:58,280
HAVE DONE WITH THOSE SPECIFIC 

1706
01:03:58,280 --> 01:03:58,647
RECOMMENDATIONS.

1707
01:03:58,647 --> 01:04:00,382
AND THE INCREASE IN LEVEL IS 

1708
01:04:00,382 --> 01:04:04,219
BASED ON HOW THE TEAMS HAVE 

1709
01:04:04,219 --> 01:04:04,819
IMPLEMENTED THESE SPECIFIC 

1710
01:04:04,819 --> 01:04:09,591
RECOMMENDATIONS OVER TIME.

1711
01:04:09,591 --> 01:04:11,359
THIS IS FEATURING AN EXAMPLE 

1712
01:04:11,359 --> 01:04:14,329
THAT WAS SHARED AT A POSTER 

1713
01:04:14,329 --> 01:04:16,898
SESSION AT HPAA LAST YEAR IN 

1714
01:04:16,898 --> 01:04:18,933
PARTNERSHIP WITH THE NATIONAL 

1715
01:04:18,933 --> 01:04:23,705
RECOVER RESEARCH STUDY WHERE WE 

1716
01:04:23,705 --> 01:04:26,074
HELD SEVERAL DIFFERENT 

1717
01:04:26,074 --> 01:04:26,875
COMMUNITY-SPECIFIC EXPERT PANELS

1718
01:04:26,875 --> 01:04:30,345
AROUND SOME OF THEIR ENGAGEMENT 

1719
01:04:30,345 --> 01:04:32,514
AND OUTREACH MARKETING AND 

1720
01:04:32,514 --> 01:04:34,115
RECRUITMENT FLYERS.

1721
01:04:34,115 --> 01:04:36,618
WHAT WE CAN SEE HERE IN THE 

1722
01:04:36,618 --> 01:04:39,220
TABLE IS THAT AGAIN WHILE ALL OF

1723
01:04:39,220 --> 01:04:40,055
THE INITIAL EXPERT 

1724
01:04:40,055 --> 01:04:43,358
RECOMMENDATIONS ARE SCORED ON 

1725
01:04:43,358 --> 01:04:45,060
OUR LEVELS OF EVIDENCE IMPACT 

1726
01:04:45,060 --> 01:04:49,931
MODEL AT A 2 OVER TIME TO 180 

1727
01:04:49,931 --> 01:04:52,200
MANY ELEVATED TO A LEVEL 3 AND 

1728
01:04:52,200 --> 01:04:54,869
SEVERAL UP TO A LEVEL 4 AND 

1729
01:04:54,869 --> 01:04:55,870
FOLLOWING THE PRESENTATION OF 

1730
01:04:55,870 --> 01:04:58,973
THE POSTER AND NATIONAL LEVEL TO

1731
01:04:58,973 --> 01:04:59,941
LEVEL 5.

1732
01:04:59,941 --> 01:05:01,676
OF ALL THE RECOMMENDATIONS THAT 

1733
01:05:01,676 --> 01:05:04,612
WERE PROVIDED TO THE RECOVER 

1734
01:05:04,612 --> 01:05:08,550
TEAM, 75% TO 100% WERE ACTED 

1735
01:05:08,550 --> 01:05:09,250
UPON WITH RAPID IMPLEMENTATION 

1736
01:05:09,250 --> 01:05:16,791
AND IMPACT.

1737
01:05:16,791 --> 01:05:20,161
SINCE THE INCEPTION IN NOVEMBER 

1738
01:05:20,161 --> 01:05:23,164
OF 2021 CEACR ESTABLISHED ITSELF

1739
01:05:23,164 --> 01:05:25,567
AS A UNIQUE RESOURCE FOR 

1740
01:05:25,567 --> 01:05:26,267
TARGETED CONSULTATION AROUND 

1741
01:05:26,267 --> 01:05:28,536
COMMUNITY ENGAGEMENT AND 

1742
01:05:28,536 --> 01:05:30,839
INCLUSIVE PARTICIPATION AND WE 

1743
01:05:30,839 --> 01:05:32,941
HAVE EVOLVED OVER THE LAST THREE

1744
01:05:32,941 --> 01:05:33,942
YEARS.

1745
01:05:33,942 --> 01:05:36,511
 WE STARTED OUT A SMALL TEAM 

1746
01:05:36,511 --> 01:05:38,213
FOCUSSING ON DEVELOPING THE 

1747
01:05:38,213 --> 01:05:40,482
EXPERT PANEL PROCESS WHICH IS 

1748
01:05:40,482 --> 01:05:41,950
REALLY BUILT SIMILARLY TO THE 

1749
01:05:41,950 --> 01:05:44,486
COMMUNITY ENGAGEMENT STUDIO 

1750
01:05:44,486 --> 01:05:47,021
MODEL WITH SOME KEY DIFFERENCES 

1751
01:05:47,021 --> 01:05:48,723
WHERE THE PANEL IS BROUGHT IN 

1752
01:05:48,723 --> 01:05:50,692
HIGHLY TAILORED TO THE SPECIFIC 

1753
01:05:50,692 --> 01:05:53,161
QUESTION OF OUR CONSULTEE AND 

1754
01:05:53,161 --> 01:05:54,796
PULLED FROM BOTH LIVED 

1755
01:05:54,796 --> 01:05:56,898
EXPERIENCE AND ACADEMIC EXPERTS 

1756
01:05:56,898 --> 01:05:57,866
ACROSS THE COUNTRY.

1757
01:05:57,866 --> 01:06:00,268
YOU CAN SEE IN THE FIRST YEAR WE

1758
01:06:00,268 --> 01:06:02,704
SERVED 11 CONSULTEES WITH 64% OF

1759
01:06:02,704 --> 01:06:07,442
THEM BEING INTERNAL TO THE CELE 

1760
01:06:07,442 --> 01:06:09,411
COHORT WHERE THIS EVOLVED OVER 

1761
01:06:09,411 --> 01:06:12,013
YEAR 2.

1762
01:06:12,013 --> 01:06:17,485
WE SERVED AN ADDITIONAL 

1763
01:06:17,485 --> 01:06:20,555
CONSULTEES WHERE WE WERE 

1764
01:06:20,555 --> 01:06:25,260
ENGAGING IN CLIENTS NOT PART OF 

1765
01:06:25,260 --> 01:06:27,595
THE CELE COHORT NATIONALLY.

1766
01:06:27,595 --> 01:06:31,199
WE ADDED THE LONGITUDINAL 

1767
01:06:31,199 --> 01:06:33,368
CONSULT MODEL AND COMPLETED OVER

1768
01:06:33,368 --> 01:06:35,503
10 EPISODIC CONSULTS IN YEAR 

1769
01:06:35,503 --> 01:06:38,573
THREE AND LAUNCHED THREE 

1770
01:06:38,573 --> 01:06:40,041
LONGITUDINAL CONSULTS SERVING 

1771
01:06:40,041 --> 01:06:41,843
NOW OVER 17 CONSULTEES WITH THE 

1772
01:06:41,843 --> 01:06:47,949
MAJORITY BEING NON-CELE.

1773
01:06:47,949 --> 01:06:50,351
THEN JUST TO FEATURE SOME OF THE

1774
01:06:50,351 --> 01:06:51,886
HIGHLIGHTS FROM YEAR 3 IN 

1775
01:06:51,886 --> 01:06:54,222
PARTICULAR, WE WERE ABLE TO 

1776
01:06:54,222 --> 01:06:55,490
DEVELOP EXPERT PANELISTS 

1777
01:06:55,490 --> 01:06:57,358
EXPERIENCE SURVEYS.

1778
01:06:57,358 --> 01:07:00,195
WE WANTED IN YEAR 3 TO FOCUS IN 

1779
01:07:00,195 --> 01:07:02,764
AND UNDERSTAND THE EXPERIENCE OF

1780
01:07:02,764 --> 01:07:03,631
THE EXPERTS THEMSELVES AND 

1781
01:07:03,631 --> 01:07:04,699
EVALUATE WHAT THEY WERE GAINING 

1782
01:07:04,699 --> 01:07:07,602
FROM THE IS EXPERIENCE.

1783
01:07:07,602 --> 01:07:10,271
IN ADDITION WE WERE ABLE TO 

1784
01:07:10,271 --> 01:07:12,674
COMPLETE EXPERT PANELS WITH 

1785
01:07:12,674 --> 01:07:14,976
NCPCR AND HEART SHARE WHERE WE 

1786
01:07:14,976 --> 01:07:16,678
HAD GENERATED OVER 54 

1787
01:07:16,678 --> 01:07:19,514
RECOMMENDATIONS FOR THEM TO 

1788
01:07:19,514 --> 01:07:20,148
INTEGRATE INTO THEIR ENGAGEMENT 

1789
01:07:20,148 --> 01:07:23,451
PROJECT.

1790
01:07:23,451 --> 01:07:24,919
AS WELL AS EPISODIC CONSULT WITH

1791
01:07:24,919 --> 01:07:26,654
WEST VIRGINIA SCHOOL OF MEDICINE

1792
01:07:26,654 --> 01:07:29,090
WHICH RESULTED IN AN OFF THE 

1793
01:07:29,090 --> 01:07:31,192
SHELF PROJECT WE CREATED 

1794
01:07:31,192 --> 01:07:32,660
TOGETHER AROUND GROWING AND 

1795
01:07:32,660 --> 01:07:34,329
SUSTAINING COMMUNITY 

1796
01:07:34,329 --> 01:07:35,730
PARTNERSHIPS WHICH WE WERE ABLE 

1797
01:07:35,730 --> 01:07:40,635
TO PRESENT AT A LIVE IN PERSON 

1798
01:07:40,635 --> 01:07:44,339
CONFERENCE HOSTED BY WSVOM.

1799
01:07:44,339 --> 01:07:49,210
TO HIGHLIGHT THE LONGITUDINAL 

1800
01:07:49,210 --> 01:07:50,678
CONSULTS WE'VE WORKED WITH 

1801
01:07:50,678 --> 01:07:52,881
CAMPUS AND DEVELOP A WEBINAR 

1802
01:07:52,881 --> 01:07:56,751
SERIES THAT JUST WRAPPED UP AND 

1803
01:07:56,751 --> 01:08:01,389
HAD 350 ATTENDEES OVERALL THAT 

1804
01:08:01,389 --> 01:08:01,689
JOINED.

1805
01:08:01,689 --> 01:08:04,225
WE HAD EVALUATION TO LOOK AT THE

1806
01:08:04,225 --> 01:08:05,994
ATTENDEES AND MOST OF THE 

1807
01:08:05,994 --> 01:08:06,928
ATTENDEES HAVE NOT YET 

1808
01:08:06,928 --> 01:08:09,564
PREVIOUSLY BEEN A P.I. ON AN NIH

1809
01:08:09,564 --> 01:08:11,466
GRANT WHICH WAS THE INTENT OF 

1810
01:08:11,466 --> 01:08:13,835
THE WEBINARS WHICH WERE BUILT TO

1811
01:08:13,835 --> 01:08:16,337
HELP IDENTIFY FUNDING 

1812
01:08:16,337 --> 01:08:17,572
OPPORTUNITIES AND GRANT 

1813
01:08:17,572 --> 01:08:20,375
APPLICATION TECHNIQUES FOR THESE

1814
01:08:20,375 --> 01:08:22,277
COMMUNITY-BASED ORGANIZATIONS 

1815
01:08:22,277 --> 01:08:25,113
WHO ARE PARTNERING WITHIN 

1816
01:08:25,113 --> 01:08:25,346
CAMPUS.

1817
01:08:25,346 --> 01:08:26,881
AND OVER HALF THE WEBINAR 

1818
01:08:26,881 --> 01:08:29,183
ATTENDEES WERE AFFILIATED WOMEN 

1819
01:08:29,183 --> 01:08:31,719
THE TARGET AUDIENCE OF A 

1820
01:08:31,719 --> 01:08:32,253
COMMUNITY ORGANIZATION.

1821
01:08:32,253 --> 01:08:33,821
WE HAVE ALSO COLLABORATED WITH 

1822
01:08:33,821 --> 01:08:35,356
RECOVER ON A LONGITUDINAL 

1823
01:08:35,356 --> 01:08:43,498
CONSULT AND ARE WORKING WITH 

1824
01:08:43,498 --> 01:08:46,334
LIAISONS TO CO-CREATE A WRITING 

1825
01:08:46,334 --> 01:08:48,236
AND DISSEMINATION INSTITUTE AS 

1826
01:08:48,236 --> 01:08:49,604
WELL AS UTILIZING AND DEVELOPING

1827
01:08:49,604 --> 01:08:52,473
A COMMUNITY-CENTERED EVALUATION 

1828
01:08:52,473 --> 01:08:52,907
PROCESS.

1829
01:08:52,907 --> 01:08:55,376
AND RECENTLY WE'VE BEEN WORKING 

1830
01:08:55,376 --> 01:08:56,644
WITH THE EARLY STAGES OF CELE 

1831
01:08:56,644 --> 01:08:59,647
FOR GENOMICS HOLDING TWO KEY 

1832
01:08:59,647 --> 01:09:00,281
INFORMANT INTERVIEW SESSIONS 

1833
01:09:00,281 --> 01:09:02,884
WITH GENOMICS AND ENGAGEMENT 

1834
01:09:02,884 --> 01:09:04,018
EXPERTS WORKING IN THE FIELD IN 

1835
01:09:04,018 --> 01:09:06,187
THE LAST DECADE AND PLANNING FOR

1836
01:09:06,187 --> 01:09:08,189
UPCOMING COMMUNITY LISTENING 

1837
01:09:08,189 --> 01:09:09,157
SESSIONS THAT WILL BE HELD IN 

1838
01:09:09,157 --> 01:09:13,761
SEPTEMBER.

1839
01:09:13,761 --> 01:09:16,998
SO WE HAVE LEARNED MANY LESSONS 

1840
01:09:16,998 --> 01:09:18,566
FROM THE LAST THREE YEARS' 

1841
01:09:18,566 --> 01:09:19,667
EXPERIENCE AND TAKING THESE 

1842
01:09:19,667 --> 01:09:21,703
FORWARD INTO CONTINUING TO 

1843
01:09:21,703 --> 01:09:22,837
EVOLVE THE WORK THAT CEACR IS 

1844
01:09:22,837 --> 01:09:23,037
DOING.

1845
01:09:23,037 --> 01:09:24,772
SOME OF WHAT WE HAVE DONE HAS 

1846
01:09:24,772 --> 01:09:30,278
BEEN AROUND REFRAMING OUR 

1847
01:09:30,278 --> 01:09:32,547
SERVIC

1848
01:09:32,547 --> 01:09:35,583
SERVICES CREATE A MENU OF 

1849
01:09:35,583 --> 01:09:40,288
SERVICES TO PROVIDE TO CULTEES.

1850
01:09:40,288 --> 01:09:42,857
WE'LL CONTINUE TO CUSTOMIZE IT 

1851
01:09:42,857 --> 01:09:44,225
TO SIZE AND SCOPE OF THEIR 

1852
01:09:44,225 --> 01:09:45,093
NEEDS.

1853
01:09:45,093 --> 01:09:51,599
WE'LL WORK HARD TO CONTINUE TO 

1854
01:09:51,599 --> 01:09:52,734
SUPPORT SPECIFICALLY 

1855
01:09:52,734 --> 01:09:54,002
CONSULTATIVE SERVICES FROM OUR 

1856
01:09:54,002 --> 01:09:56,070
PERSPECTIVE ESPECIALLY IN THE 

1857
01:09:56,070 --> 01:09:57,639
LONGITUDINAL PROJECTS AND HOW WE

1858
01:09:57,639 --> 01:09:58,606
MAY BE ABLE TO ADVANCE THEIR 

1859
01:09:58,606 --> 01:09:59,841
COMMUNITY ENGAGEMENT AND 

1860
01:09:59,841 --> 01:10:00,441
OUTREACH PROCESS.

1861
01:10:00,441 --> 01:10:02,677
WE'LL CONTINUE TO IMPROVE OUR 

1862
01:10:02,677 --> 01:10:04,646
EXPERT PANEL SEEKING MORE 

1863
01:10:04,646 --> 01:10:14,322
FEEDBACK AND IT  ITERATING THE 

1864
01:10:14,322 --> 01:10:16,057
PROCESS TO THE PANELISTS 

1865
01:10:16,057 --> 01:10:17,091
THEMSELVES AND PROCESS AND 

1866
01:10:17,091 --> 01:10:18,493
CONTINUE TO DEVELOP MESSAGING 

1867
01:10:18,493 --> 01:10:19,594
AND GETTING THE WORD OUT ABOUT 

1868
01:10:19,594 --> 01:10:23,531
THE AVAILABILITY OF OUR SERVICES

1869
01:10:23,531 --> 01:10:26,401
POSSIBLY THROUGH SHORT VIGNETTES

1870
01:10:26,401 --> 01:10:29,003
HIGHLIGHTING SOME CONSULTS WE'VE

1871
01:10:29,003 --> 01:10:30,638
BEEN ABLE TO ESTABLISH THUS FAR 

1872
01:10:30,638 --> 01:10:31,939
AND DISSEMINATING THROUGH SOCIAL

1873
01:10:31,939 --> 01:10:32,140
MEDIA.

1874
01:10:32,140 --> 01:10:35,076
WE'RE ALSO LOOKING AT HOW TO 

1875
01:10:35,076 --> 01:10:38,513
SCALE OUR SERVICES AND HOW TO 

1876
01:10:38,513 --> 01:10:39,580
STRATEGICALLY DEVELOP RESOURCES 

1877
01:10:39,580 --> 01:10:44,552
SO THAT CLIENTS CAN ACCESS THESE

1878
01:10:44,552 --> 01:10:45,420
ASYNCHRONOUSLY AND WHERE CEACR 

1879
01:10:45,420 --> 01:10:46,988
CAN COME IN AND SUPPORT THEM 

1880
01:10:46,988 --> 01:10:48,723
AFTER THE BASELINE SERVICES HAVE

1881
01:10:48,723 --> 01:10:51,159
ALREADY BEEN ACCESSED AND 

1882
01:10:51,159 --> 01:10:56,431
PROVIDED.

1883
01:10:56,431 --> 01:10:57,865
UP WITH OF THE THINGS WE'RE 

1884
01:10:57,865 --> 01:10:59,500
TAKING FORWARD IN THE NEXT 

1885
01:10:59,500 --> 01:11:02,570
COUPLE OF OUR WORK IS THINKING A

1886
01:11:02,570 --> 01:11:05,206
LOT ABOUT SOMETHING THAT WAS 

1887
01:11:05,206 --> 01:11:06,474
BROUGHT UP PRIOR TALKS AS WELL 

1888
01:11:06,474 --> 01:11:08,476
WHICH IS THE DIFFERENCE OF WHERE

1889
01:11:08,476 --> 01:11:14,749
YOU ENGAGE TO PARTNER AND FORM 

1890
01:11:14,749 --> 01:11:16,150
LONG-TERM RELATIONSHIPS WITH 

1891
01:11:16,150 --> 01:11:17,251
COMMUNITY-BASED ORGANIZATIONS 

1892
01:11:17,251 --> 01:11:18,653
VERSUS THE JUST IN TIME 

1893
01:11:18,653 --> 01:11:22,790
ENGAGEMENT TO RECRUIT CONCEPT.

1894
01:11:22,790 --> 01:11:24,959
OVER THE NEXT SEVERAL YEARS WE 

1895
01:11:24,959 --> 01:11:26,694
HOPE TO ADVOCATE TO SHIFT THE 

1896
01:11:26,694 --> 01:11:28,262
RESEARCH ENGAGEMENT RESEARCH 

1897
01:11:28,262 --> 01:11:29,330
FROM ENGAGE TO RECRUIT TO ENGAGE

1898
01:11:29,330 --> 01:11:39,540
TO PARTNER.

1899
01:11:42,643 --> 01:11:44,345
SOME FACE CHALLENGES IN 

1900
01:11:44,345 --> 01:11:45,012
HISTORICALLY UNDER REPRESENTED 

1901
01:11:45,012 --> 01:11:46,748
COMMUNITY AND HOPE TO GROW A 

1902
01:11:46,748 --> 01:11:49,150
CULTURE CHANGE OF SEEKING TO 

1903
01:11:49,150 --> 01:11:51,953
DEVELOPMENT ENGAGEMENT AND 

1904
01:11:51,953 --> 01:11:57,625
RESEARCH EARLY IN THE RESEARCH 

1905
01:11:57,625 --> 01:12:06,134
CONTINUUM AND LONG BEFORE 

1906
01:12:06,134 --> 01:12:08,870
STUDIES FORM A COLLABORATIVE 

1907
01:12:08,870 --> 01:12:13,674
APPROACH AND TREATING THEM AS 

1908
01:12:13,674 --> 01:12:15,076
EQUAL STAKEHOLDERS AND THE 

1909
01:12:15,076 --> 01:12:16,344
TARGETED APPROACH FOR THE ENGAGE

1910
01:12:16,344 --> 01:12:19,080
TO RECRUIT WHICH IS FOCUSSED 

1911
01:12:19,080 --> 01:12:22,650
MORE ON IDENTIFYING AND REACHING

1912
01:12:22,650 --> 01:12:29,190
OUT TO INDIVIDUALS WITH THE ROLE

1913
01:12:29,190 --> 01:12:35,763
OF ENROLLMENT AND LOOK AT THE 

1914
01:12:35,763 --> 01:12:38,733
PRINCIPLES OF COMMUNITY-ENGAGED 

1915
01:12:38,733 --> 01:12:41,169
RESEARCH WITH LONG TERM 

1916
01:12:41,169 --> 01:12:42,703
RELATIONSHIPS VERSUS SHORT TERM 

1917
01:12:42,703 --> 01:12:47,909
ACTION AND VERSUS JUST 

1918
01:12:47,909 --> 01:12:48,943
RECRUITMENT GOALS AND HAVING 

1919
01:12:48,943 --> 01:12:55,783
SHA

1920
01:12:55,783 --> 01:12:58,252
SHAREDSES BENEFIT TEAMS AND 

1921
01:12:58,252 --> 01:12:59,821
PROVIDING A VOICE IN THE 

1922
01:12:59,821 --> 01:13:01,088
RESEARCH PROCESS OPPOSED TO 

1923
01:13:01,088 --> 01:13:02,290
TRANSACTIONAL RELATIONSHIPS 

1924
01:13:02,290 --> 01:13:04,025
WHICH IS JUST ABOUT PARTICIPANTS

1925
01:13:04,025 --> 01:13:06,260
CONTRIBUTING TO THE RESEARCH 

1926
01:13:06,260 --> 01:13:07,528
WITHOUT NECESSARILY BENEFITING 

1927
01:13:07,528 --> 01:13:09,997
IN THE LONG-TERM.

1928
01:13:09,997 --> 01:13:14,502
 -- LONG TERM.

1929
01:13:14,502 --> 01:13:19,373
WE HOPE TO DO THIS BY CENTERING 

1930
01:13:19,373 --> 01:13:20,007
THE COMMUNITY-BASED 

1931
01:13:20,007 --> 01:13:22,810
ORGANIZATIONS AND PARTNERS AS 

1932
01:13:22,810 --> 01:13:24,178
THE BACKBONE OF 

1933
01:13:24,178 --> 01:13:26,814
COMMUNITY-ENGAGED AND OUTREACH 

1934
01:13:26,814 --> 01:13:27,014
WORK.

1935
01:13:27,014 --> 01:13:29,517
WE'RE DOING THIS BY DEVELOPING 

1936
01:13:29,517 --> 01:13:31,886
THE BEST PRACTICES FOR ENGAGING 

1937
01:13:31,886 --> 01:13:35,857
EARLY AND HOW TO ENGAGE FOR THAT

1938
01:13:35,857 --> 01:13:36,524
LONG-TERM PARTNERSHIP OPPOSED TO

1939
01:13:36,524 --> 01:13:39,794
THOSE JUST IN TIME RECRUIT TO 

1940
01:13:39,794 --> 01:13:41,562
ENGAGE MOMENTS.

1941
01:13:41,562 --> 01:13:44,098
HOWEVER, WE RECOGNIZE THAT BOTH 

1942
01:13:44,098 --> 01:13:45,967
OUR EQUALLY IMPORTANT AND WILL 

1943
01:13:45,967 --> 01:13:49,837
CONTINUE TO HAPPEN.

1944
01:13:49,837 --> 01:13:52,974
AND SO WE HAVE DEVELOPED A NEW 

1945
01:13:52,974 --> 01:13:55,843
TOOL TO TRY TO FURTHER 

1946
01:13:55,843 --> 01:13:57,545
UNDERSTAND BOTH WHERE RESEARCH 

1947
01:13:57,545 --> 01:14:00,681
TEAMS ARE AT IN TERMS OF THEIR 

1948
01:14:00,681 --> 01:14:04,952
EXPERIENCE AND UNDERSTANDING OF 

1949
01:14:04,952 --> 01:14:07,154
COMMUNITY-ENGAGED RESEARCH, 

1950
01:14:07,154 --> 01:14:09,123
REALLY DOING A BASELINE CAPACITY

1951
01:14:09,123 --> 01:14:10,391
ASSESSMENT WITH THEM.

1952
01:14:10,391 --> 01:14:13,928
WE HOPE TO SPEND THE NEXT YEAR 

1953
01:14:13,928 --> 01:14:15,263
WITH THE TOOL AS WELL AS A JUST 

1954
01:14:15,263 --> 01:14:18,299
IN TIME ENGAGEMENT TOOL THAT 

1955
01:14:18,299 --> 01:14:20,668
LOOKS AT SPECIFIC INDIVIDUAL 

1956
01:14:20,668 --> 01:14:21,903
ENGAGEMENT AND OUTREACH 

1957
01:14:21,903 --> 01:14:25,339
OPPORTUNITIES TO TRY TO DEEPEN 

1958
01:14:25,339 --> 01:14:27,742
THE VALUE OF THE MOMENTS AND TO 

1959
01:14:27,742 --> 01:14:29,777
MAKE THEM MORE SUCCESSFUL IN 

1960
01:14:29,777 --> 01:14:34,448
TERMS OF ACTUALLY ENROLLING 

1961
01:14:34,448 --> 01:14:35,082
SUCCESSFULLY PARTICIPANTS INTO 

1962
01:14:35,082 --> 01:14:41,889
THOSE STUDIES.

1963
01:14:41,889 --> 01:14:43,424
FINALLY, WE HOPE TO CONTINUE TO 

1964
01:14:43,424 --> 01:14:45,159
COLLABORATE WITH THE AMAZING 

1965
01:14:45,159 --> 01:14:46,227
RESEARCHERS THAT HAVE COME 

1966
01:14:46,227 --> 01:14:47,662
BEFORE US IN LAYING THE GROUND 

1967
01:14:47,662 --> 01:14:50,765
WORK AROUND COMMUNITY ENGAGED 

1968
01:14:50,765 --> 01:14:53,668
WORK AND PARTNERSHIP CONTINUUMS 

1969
01:14:53,668 --> 01:14:56,804
AND TO TRY TO MEET NOT ONLY THE 

1970
01:14:56,804 --> 01:14:58,572
COMMUNITIES WHERE THEY'RE AT AND

1971
01:14:58,572 --> 01:15:00,875
MEET THE RESEARCH TEAMS WHERE 

1972
01:15:00,875 --> 01:15:01,742
THEY'RE AT AND UNDERSTAND 

1973
01:15:01,742 --> 01:15:04,445
EXACTLY WHERE THEY NEED TO 

1974
01:15:04,445 --> 01:15:07,615
INTERACT AND IMPROVE 

1975
01:15:07,615 --> 01:15:10,551
OPPORTUNITIES FOR SUCCESSFUL 

1976
01:15:10,551 --> 01:15:12,086
ENGAGEMENT AND LONG-TERM 

1977
01:15:12,086 --> 01:15:13,421
PARTNERSHIP TO HOPEFULLY MOVE 

1978
01:15:13,421 --> 01:15:17,491
THIS FORWARD AS A CULTURE CHANGE

1979
01:15:17,491 --> 01:15:19,794
TOWARDS ENGAGING LONGITUDINALLY 

1980
01:15:19,794 --> 01:15:21,929
AND NOT UNDER EACH UNIQUE 

1981
01:15:21,929 --> 01:15:22,697
INDIVIDUAL CIRCUMSTANCE FOR 

1982
01:15:22,697 --> 01:15:31,105
STUDIES THAT ARE AT HAND.

1983
01:15:31,105 --> 01:15:32,506
FINALLY, THIS IS OUR CONTACT 

1984
01:15:32,506 --> 01:15:32,807
INFORMATION.

1985
01:15:32,807 --> 01:15:34,141
IF YOU'D LIKE TO REACH OUT TO US

1986
01:15:34,141 --> 01:15:38,646
TO CONNECT AND SEE WHERE WE 

1987
01:15:38,646 --> 01:15:39,947
MIGHT BE ABLE TO SYNERGIZE IN 

1988
01:15:39,947 --> 01:15:44,251
OUR COLLABORATIVE WORK OR HAVE A

1989
01:15:44,251 --> 01:15:46,387
CONSULT REQUEST YOU HAVE TO 

1990
01:15:46,387 --> 01:15:47,555
REVIEW AND IF YOU'D CONSIDER 

1991
01:15:47,555 --> 01:15:49,423
JOINING OUR ROSTER OF EXPERT 

1992
01:15:49,423 --> 01:15:50,558
PANELISTS THAT WE COULD 

1993
01:15:50,558 --> 01:15:52,493
POTENTIALLY CALL UPON YOU TO 

1994
01:15:52,493 --> 01:15:53,694
SERVE ON ONE OF OUR EXPERT 

1995
01:15:53,694 --> 01:15:54,161
PANELS IN THE FUTURE.

1996
01:15:54,161 --> 01:16:04,472
THANK YOU SO MUCH.

1997
01:16:05,172 --> 01:16:06,640
>> 

1998
01:16:06,640 --> 01:16:08,275
>> THANK YOU FOR THE
LESSONS 

1999
01:16:08,275 --> 01:16:11,012
LEARNED AND BEST PRACTICES ON 

2000
01:16:11,012 --> 01:16:13,581
THE CONSULTATIVE WORK.

2001
01:16:13,581 --> 01:16:16,517
NOW IS THE TIME TO OPEN UP FOR 

2002
01:16:16,517 --> 01:16:17,918
QUESTIONS.

2003
01:16:17,918 --> 01:16:21,088
GEORGE ASKED WHETHER WE HAVE A 

2004
01:16:21,088 --> 01:16:23,257
MORE TANGIBLE RELEASE DATE FOR 

2005
01:16:23,257 --> 01:16:25,426
THE PRINCIPLES OF ENGAGEMENT 

2006
01:16:25,426 --> 01:16:28,896
DR. COHN PRESENTED ON AND 

2007
01:16:28,896 --> 01:16:30,498
DR. COHN PROVIDED OCTOBER, 

2008
01:16:30,498 --> 01:16:30,765
NOVEMBER.

2009
01:16:30,765 --> 01:16:34,268
YOU CAN SEE HOW EVERYONE'S 

2010
01:16:34,268 --> 01:16:38,706
WAITING WITH BATED BREATH.

2011
01:16:38,706 --> 01:16:40,174
AND ANOTHER QUESTION AND I'M 

2012
01:16:40,174 --> 01:16:40,908
POSING THIS TO THE GROUP AND 

2013
01:16:40,908 --> 01:16:42,576
FEEL FREE TO JUMP IN AND ALL OF 

2014
01:16:42,576 --> 01:16:45,513
YOU CAN WEIGH IN IF YOU'D LIKE.

2015
01:16:45,513 --> 01:16:49,617
CAN YOU PROVIDE GUIDANCE ON WHAT

2016
01:16:49,617 --> 01:16:51,786
YOU'VE SEEN IN BEST PRACTICES IN

2017
01:16:51,786 --> 01:16:52,420
CLOSING A RESEARCH PROJECT IN A 

2018
01:16:52,420 --> 01:17:02,596
COMMUNITY?

2019
01:17:05,499 --> 01:17:06,634
>> ONE OF THE THINGS I WAS

2020
01:17:06,634 --> 01:17:08,836
THINKING ABOUT WHEN I SAW THE 

2021
01:17:08,836 --> 01:17:11,505
QUESTION IS THE IMPORTANCE OF 

2022
01:17:11,505 --> 01:17:13,040
THE ONGOING DEVELOPMENT OF 

2023
01:17:13,040 --> 01:17:15,976
RELATIONSHIP AND TRUST THAT 

2024
01:17:15,976 --> 01:17:18,112
HAPPENS THROUGH THE ENGAGEMENT 

2025
01:17:18,112 --> 01:17:18,345
PROCESS.

2026
01:17:18,345 --> 01:17:20,014
THAT EVEN WHEN A RESEARCH STUDY 

2027
01:17:20,014 --> 01:17:21,816
ENDS, IT'S NOT THE END OF THAT 

2028
01:17:21,816 --> 01:17:23,717
ONGOING RELATIONSHIP AND TRUST 

2029
01:17:23,717 --> 01:17:25,619
AND TRUSTWORTHINESS YOU 

2030
01:17:25,619 --> 01:17:27,254
ESTABLISHED WITH THE COMMUNITY 

2031
01:17:27,254 --> 01:17:29,457
AND IN OUR FOUNDATIONAL 

2032
01:17:29,457 --> 01:17:31,092
EXPECTATIONS FOR PARTNERSHIPS IN

2033
01:17:31,092 --> 01:17:32,560
RESEARCH IT'S PART OF THE 

2034
01:17:32,560 --> 01:17:34,829
BUILDING BLOCKS AND ENGAGEMENT 

2035
01:17:34,829 --> 01:17:37,698
IN MANY WAYS WE ALSO HEARD THIS 

2036
01:17:37,698 --> 01:17:40,768
FROM DR. MASSART ENGAGEMENT 

2037
01:17:40,768 --> 01:17:42,002
BEING SOMETHING THAT HAPPENS 

2038
01:17:42,002 --> 01:17:44,772
EARLY ON AND IS AN ONGOING 

2039
01:17:44,772 --> 01:17:47,174
EFFORT EVEN BEYOND ANY PROJECT 

2040
01:17:47,174 --> 01:17:49,043
BY PROJECT SPECIFICITY.

2041
01:17:49,043 --> 01:17:51,112
AND ONE OF THE THINGS THAT WE DO

2042
01:17:51,112 --> 01:17:53,481
OFFER IN TERMS OF RECOGNIZING 

2043
01:17:53,481 --> 01:17:55,983
THAT SUPPORT'S NECESSARY, AT 

2044
01:17:55,983 --> 01:17:57,351
PCORI THERE'S THE OPPORTUNITY 

2045
01:17:57,351 --> 01:17:59,086
FOR ENGAGEMENT AWARDS THAT ALLOW

2046
01:17:59,086 --> 01:18:02,223
FOR THE DEVELOPMENT OF RESEARCH 

2047
01:18:02,223 --> 01:18:05,092
AGENDAS, QUESTIONS THAT MAY BE 

2048
01:18:05,092 --> 01:18:07,795
OF IMPORTANCE FOR CER AND 

2049
01:18:07,795 --> 01:18:10,531
RESEARCH CONDUCT THROUGH CER 

2050
01:18:10,531 --> 01:18:14,869
FUNDING AND DISSEMINATION AND 

2051
01:18:14,869 --> 01:18:16,103
IMPLEMENTATION FUNDING THAT 

2052
01:18:16,103 --> 01:18:17,671
ANTICIPATES THE COMMUNITY 

2053
01:18:17,671 --> 01:18:19,507
ENGAGEMENT AND SUPPORT AND IT 

2054
01:18:19,507 --> 01:18:23,544
DON'T THINK IT IT NEGATES THE 

2055
01:18:23,544 --> 01:18:25,713
ONGOING ENGAGEMENT EXTENDS 

2056
01:18:25,713 --> 01:18:28,482
BEYOND THE ARC OF THE PROJECT.

2057
01:18:28,482 --> 01:18:36,023
>> I'D LOVE TO ADD TO
THAT, 

2058
01:18:36,023 --> 01:18:37,224
THANK YOU, DR. COOK.

2059
01:18:37,224 --> 01:18:39,426
I'D LIKE TO SEE IT AS A CIRCLE 

2060
01:18:39,426 --> 01:18:41,595
AND NOT AN END BUT THE BEGINNING

2061
01:18:41,595 --> 01:18:43,430
OF A NEXT PHASE OF PARTNERSHIP 

2062
01:18:43,430 --> 01:18:45,933
AND IT WOULD BE AMAZE BEING IF 

2063
01:18:45,933 --> 01:18:48,502
THERE WAS SUSTAINABLE LONG-TERM 

2064
01:18:48,502 --> 01:18:50,371
FUNDING TO SUPPORT THOSE 

2065
01:18:50,371 --> 01:18:52,006
RELATIONSHIPS BUT I THINK REALLY

2066
01:18:52,006 --> 01:18:53,841
THINKING ABOUT HOW TO HONOR AND 

2067
01:18:53,841 --> 01:18:55,409
THANK THE COMMUNITIES THAT WERE 

2068
01:18:55,409 --> 01:18:56,577
INVOLVED IN THE RESEARCH STUDY 

2069
01:18:56,577 --> 01:19:00,781
IS A REALLY IMPORTANT PART 

2070
01:19:00,781 --> 01:19:02,149
AROUND CLOSING THAT STUDY.

2071
01:19:02,149 --> 01:19:08,189
AND THEN HOW TO DISSEMINATE THE 

2072
01:19:08,189 --> 01:19:09,690
RESULTS BACK AS SOON AS MADE 

2073
01:19:09,690 --> 01:19:10,724
AVAILABLE OR POSSIBLE BACK TO 

2074
01:19:10,724 --> 01:19:11,625
THE COMMUNITY.

2075
01:19:11,625 --> 01:19:13,627
AND HAVING THAT PLAN AND THAT 

2076
01:19:13,627 --> 01:19:14,795
PLAN PROBABLY SHOULD START FROM 

2077
01:19:14,795 --> 01:19:17,831
THE BEGINNING BUT THAT'S WHERE 

2078
01:19:17,831 --> 01:19:20,868
THAT TRANSITION CAN OCCUR WITH 

2079
01:19:20,868 --> 01:19:25,339
THAT FOCUS NOW ON HONORING AND 

2080
01:19:25,339 --> 01:19:30,177
THANKING PARTICIPATION AND DEM  

2081
01:19:30,177 --> 01:19:31,745
DISSEMINATING THE RESULTS BACK 

2082
01:19:31,745 --> 01:19:34,782
TO SEE HOW THE COMMUNITY CAN BE 

2083
01:19:34,782 --> 01:19:35,916
EMPOWERED WITH THE DATA.

2084
01:19:35,916 --> 01:19:38,719
IT'S A VALUE AT SOME LEVEL, I 

2085
01:19:38,719 --> 01:19:39,386
GUARANTEE IT.

2086
01:19:39,386 --> 01:19:43,190
THINK OF ADDING THAT AS YOUR 

2087
01:19:43,190 --> 01:19:43,624
LONG-TERM CONTINUED 

2088
01:19:43,624 --> 01:19:49,430
COLLABORATION.

2089
01:19:49,430 --> 01:19:51,365
>> AL WOULD YOU LIKE TO
WEIGH 

2090
01:19:51,365 --> 01:19:51,532
IN?

2091
01:19:51,532 --> 01:19:53,467
>> FROM THE PERSPECTIVE OF
THE 

2092
01:19:53,467 --> 01:19:56,070
COMMUNITY, AS I LISTEN TO THE 

2093
01:19:56,070 --> 01:19:57,104
CONVERSATION WHAT SURFACES FOR 

2094
01:19:57,104 --> 01:20:00,374
ME IS THE IDEA OF SEEING 

2095
01:20:00,374 --> 01:20:01,809
COMMUNITY-BASED ORGANIZATIONS AS

2096
01:20:01,809 --> 01:20:03,544
BEING MORE JUST FOR THE PURPOSE 

2097
01:20:03,544 --> 01:20:06,480
OF WORKING ON A SHORT-TERM BASIS

2098
01:20:06,480 --> 01:20:07,781
WITH THEM.

2099
01:20:07,781 --> 01:20:10,684
THINKING ABOUT CBOs, PATIENT 

2100
01:20:10,684 --> 01:20:13,153
ORGANIZATIONS AND SIMILAR 

2101
01:20:13,153 --> 01:20:15,089
GROUPS, MORE HOLISTICALLY, I 

2102
01:20:15,089 --> 01:20:16,824
THINK IT'S IMPORTANT THAT WE 

2103
01:20:16,824 --> 01:20:19,393
BEGIN THE WORK VERY EARLY ON TO 

2104
01:20:19,393 --> 01:20:23,664
THINK ABOUT THEIR CAPACITY TO 

2105
01:20:23,664 --> 01:20:25,466
SUSTAIN THEMSELVES BEYOND THE 

2106
01:20:25,466 --> 01:20:27,468
FUNDED RESEARCH CYCLE AND 

2107
01:20:27,468 --> 01:20:29,370
FRANKLY THIS IS WHAT HAS 

2108
01:20:29,370 --> 01:20:31,272
SURFACED IN THE PAST YEAR AS WE 

2109
01:20:31,272 --> 01:20:36,443
MOVE FROM MORE ACUTE PHASE OF 

2110
01:20:36,443 --> 01:20:37,645
COVID-19 RESPONSE TO OUR CURRENT

2111
01:20:37,645 --> 01:20:38,712
WHERE WE ARE NOW.

2112
01:20:38,712 --> 01:20:40,881
THIS IS WHAT THE CONCERN HAS 

2113
01:20:40,881 --> 01:20:43,550
BEEN FROM COMMUNITY-BASED 

2114
01:20:43,550 --> 01:20:46,153
ORGANIZATIONS IS WHAT DO WE DO 

2115
01:20:46,153 --> 01:20:46,320
NOW?

2116
01:20:46,320 --> 01:20:48,022
I THINK MORE ATTENTION HAS TO BE

2117
01:20:48,022 --> 01:20:52,192
GIVEN TO SUPPORTING THE GROWTH, 

2118
01:20:52,192 --> 01:20:53,727
DEVELOPMENT, CAPACITY OF 

2119
01:20:53,727 --> 01:20:55,562
COMMUNITY LEADERS AND GROUPS TO 

2120
01:20:55,562 --> 01:20:57,831
SUSTAIN THEMSELVES ON A 

2121
01:20:57,831 --> 01:20:59,099
LONG-TERM BASIS.

2122
01:20:59,099 --> 01:21:00,701
THAT'S A LOT OF WORK AND FRANKLY

2123
01:21:00,701 --> 01:21:02,636
IT'S DIFFERENT WORK THAN WHAT WE

2124
01:21:02,636 --> 01:21:04,538
HISTORICALLY HAVE BEEN ENGAGED 

2125
01:21:04,538 --> 01:21:11,712
IN.

2126
01:21:11,712 --> 01:21:14,381
>> I'LL ALSO WEIGH IN IT'S
COME 

2127
01:21:14,381 --> 01:21:15,816
ACROSS FOR ALL OF US WHO DO THIS

2128
01:21:15,816 --> 01:21:17,518
WORK IN COMMUNITIES AND THE 

2129
01:21:17,518 --> 01:21:19,019
RELATIONSHIP HAS TO BE 

2130
01:21:19,019 --> 01:21:19,687
MAINTAINED.

2131
01:21:19,687 --> 01:21:22,356
I WORK WITH THE COMMUNITY IN 

2132
01:21:22,356 --> 01:21:26,160
HARLEM I'VE BEEN WITH ALMOST 22 

2133
01:21:26,160 --> 01:21:27,294
YEARS THROUGH GRANTS AND NO 

2134
01:21:27,294 --> 01:21:30,964
GRANTS AND THAT RELATIONSHIP 

2135
01:21:30,964 --> 01:21:33,834
THAT CAN'T BE GRANT DEPENDENT.

2136
01:21:33,834 --> 01:21:37,304
FOR FULL TRANSPARENCY I KNOW 

2137
01:21:37,304 --> 01:21:38,739
ERICA AND SHE'S HEARD ME SAY A 

2138
01:21:38,739 --> 01:21:40,307
FEW THINGS ABOUT THIS IN THE 

2139
01:21:40,307 --> 01:21:40,507
PAST.

2140
01:21:40,507 --> 01:21:44,378
I DO THINK IN TERMS OF WHAT 

2141
01:21:44,378 --> 01:21:46,880
MYLYNDA WAS SAYING IN 

2142
01:21:46,880 --> 01:21:48,282
RE-IMAGINING THE ENTERPRISE THIS

2143
01:21:48,282 --> 01:21:49,917
IS A GROUND THAT'S VERY FERTILE 

2144
01:21:49,917 --> 01:21:51,852
TO RE-IMAGINE HOW WE MAKE AND 

2145
01:21:51,852 --> 01:21:55,189
KEEP THESE CONNECTIONS GOING.

2146
01:21:55,189 --> 01:21:57,358
I'LL ALSO SAY AT THE SAME TOPIC 

2147
01:21:57,358 --> 01:21:58,625
THEY'RE NOT TRANSFERRABLE 

2148
01:21:58,625 --> 01:21:59,326
NECESSARY.

2149
01:21:59,326 --> 01:22:00,994
IT'S NOT LIKE YOU CAN GIVE THIS 

2150
01:22:00,994 --> 01:22:02,996
RELATIONSHIP TO SOMEBODY ELSE.

2151
01:22:02,996 --> 01:22:06,200
IT'S A RELATIONSHIP WE HAVE WITH

2152
01:22:06,200 --> 01:22:07,735
THE PEOPLE WE'RE WORKING WITH 

2153
01:22:07,735 --> 01:22:08,369
AND THE REVERSE.

2154
01:22:08,369 --> 01:22:10,804
WE NEED TO THINK ABOUT IT AS WE 

2155
01:22:10,804 --> 01:22:12,072
ESTABLISH THEM.

2156
01:22:12,072 --> 01:22:13,307
I THINK THERE'S ALSO SOME 

2157
01:22:13,307 --> 01:22:16,043
THOUGHTS AND I THINK SHE MAY BE 

2158
01:22:16,043 --> 01:22:19,179
ASKING ABOUT STANDING UP AND SUN

2159
01:22:19,179 --> 01:22:20,547
SETTING ADVISORY BOARDS AND WHAT

2160
01:22:20,547 --> 01:22:23,617
HES THE MOST SENSITIVE WAY TO DO

2161
01:22:23,617 --> 01:22:24,618
WORK LIKE THAT SO IT'S 

2162
01:22:24,618 --> 01:22:25,753
RESPECTFUL OF THE WORK PEOPLE 

2163
01:22:25,753 --> 01:22:26,920
HAVE PUT IN.

2164
01:22:26,920 --> 01:22:28,522
SO I THINK THERE'S A LOT OF WE 

2165
01:22:28,522 --> 01:22:31,091
CAN THINK ABOUT AS WE DO THIS 

2166
01:22:31,091 --> 01:22:33,293
WORK IN TERMS OF THE MIRROR 

2167
01:22:33,293 --> 01:22:38,665
IMAGE OR OTHER SIDE OF HOW WE 

2168
01:22:38,665 --> 01:22:40,100
SUN SET RESPECTIVELY AND MOVE 

2169
01:22:40,100 --> 01:22:41,168
FROM ONE THING TO ANOTHER.

2170
01:22:41,168 --> 01:22:42,770
I THINK IT'S A GREAT QUESTION.

2171
01:22:42,770 --> 01:22:44,905
ONE WE ALL MAYBE NEED TO HAVE A 

2172
01:22:44,905 --> 01:22:46,039
FOLLOW UP WEBINAR TO THINK ABOUT

2173
01:22:46,039 --> 01:22:47,508
THAT ONE.

2174
01:22:47,508 --> 01:22:49,209
>> LIZ, WHAT WOULD IT LOOK
LIKE 

2175
01:22:49,209 --> 01:22:53,147
IF AT THE END OF PROJECTS 

2176
01:22:53,147 --> 01:22:54,248
ACADEMIC INSTITUTIONS AND 

2177
01:22:54,248 --> 01:22:55,916
RESEARCHERS WERE WRITING LETTERS

2178
01:22:55,916 --> 01:22:57,851
OF RECOMMENDATION ON BEHALF OF 

2179
01:22:57,851 --> 01:22:58,852
COMMUNITY AND PATIENT GROUPS?

2180
01:22:58,852 --> 01:23:01,155
WHAT WOULD THAT LOOK LIKE?

2181
01:23:01,155 --> 01:23:04,558
AND I THINK WE NEED TO EXPLORE 

2182
01:23:04,558 --> 01:23:06,660
THAT EVEN MORE LIKE THINKING 

2183
01:23:06,660 --> 01:23:08,495
WHAT WE DESCRIBED AND MYLYNDA 

2184
01:23:08,495 --> 01:23:09,863
AND I DESCRIBE AS THE 

2185
01:23:09,863 --> 01:23:11,765
RECIPROCITY OF THE PARTNERSHIP.

2186
01:23:11,765 --> 01:23:15,035
SO HOW DO WE FACILITATE THAT AND

2187
01:23:15,035 --> 01:23:17,104
SUSTAIN THAT?

2188
01:23:17,104 --> 01:23:19,640
I THINK ABOUT MY TERMS OF BEING 

2189
01:23:19,640 --> 01:23:24,945
A LEADER ENGAGED IN THE CTSA AND

2190
01:23:24,945 --> 01:23:29,883
PCORI IT'S ALL BEEN AN ITERATIVE

2191
01:23:29,883 --> 01:23:31,018
PROCESSING LIKE A SCAFFOLDING 

2192
01:23:31,018 --> 01:23:33,120
THAT BUILDS AND HAVE TO THINK OF

2193
01:23:33,120 --> 01:23:35,355
THE COMMUNITY AS THE SAME WAY, 

2194
01:23:35,355 --> 01:23:36,690
BUILDING CAPACITY FOR A 

2195
01:23:36,690 --> 01:23:42,062
LONG-TERM IMPACT IN RESEARCH.

2196
01:23:42,062 --> 01:23:42,696
IF THEY'RE NOT INTERESTED IN 

2197
01:23:42,696 --> 01:23:44,097
RESEARCH LOOKING AT WHERE THE 

2198
01:23:44,097 --> 01:23:45,966
INTEREST LIES AND SUPPORTING 

2199
01:23:45,966 --> 01:23:47,167
THEM IN THOSE EFFORTS.

2200
01:23:47,167 --> 01:23:48,969
 WE DO A LOT AROUND CAPACITY 

2201
01:23:48,969 --> 01:23:51,271
BUILDING FOR THAT EXACT REASON.

2202
01:23:51,271 --> 01:23:54,007
WE HAVE A PORTFOLIO AROUND 

2203
01:23:54,007 --> 01:23:55,409
CAPACITY BUILDING THAT DOES THAT

2204
01:23:55,409 --> 01:23:59,046
WORK AND THINKSES ABOUT IT 

2205
01:23:59,046 --> 01:23:59,279
DEEPLY.

2206
01:23:59,279 --> 01:24:00,814
MY COLLEAGUE IS ON THE PHONE AND

2207
01:24:00,814 --> 01:24:02,182
DOES A LOT OF THAT AS WELL.

2208
01:24:02,182 --> 01:24:05,185
THINKING WHAT THAT LOOKS LIKE.

2209
01:24:05,185 --> 01:24:06,687
I THINK PLEASE HAVE US BACK AND 

2210
01:24:06,687 --> 01:24:12,159
WE'LL DO A ROUND OF CAPACITY 

2211
01:24:12,159 --> 01:24:13,293
BUILDING AND EVERYTHING THAT 

2212
01:24:13,293 --> 01:24:14,595
LIFTS UP THE COMMUNITY SECTION.

2213
01:24:14,595 --> 01:24:15,629
I THINK IT'S SUCH AN IMPORTANT 

2214
01:24:15,629 --> 01:24:19,299
PART OF THIS WORK.

2215
01:24:19,299 --> 01:24:20,868
>> THAT'S A GREAT IDEA FOR

2216
01:24:20,868 --> 01:24:21,602
ANOTHER LECTURE.

2217
01:24:21,602 --> 01:24:26,940
WE NEED TO COME BACK AND TALK 

2218
01:24:26,940 --> 01:24:28,675
ABOUT THAT CTRIS CROSS-CUTTING 

2219
01:24:28,675 --> 01:24:29,943
THEME IN CAPACITY BUILDING.

2220
01:24:29,943 --> 01:24:31,078
I KNOW WE'RE RUNNING SHORT OF 

2221
01:24:31,078 --> 01:24:33,113
TIME AND WANT TO GET THIS OTHER 

2222
01:24:33,113 --> 01:24:35,916
QUESTION THAT POPPED IN THE CHAT

2223
01:24:35,916 --> 01:24:38,018
FROM RONNI TAP.

2224
01:24:38,018 --> 01:24:40,053
I KNOW FDA AND HHS RELEASED 

2225
01:24:40,053 --> 01:24:42,256
LANGUAGE ACCESS PLANS TO HELP 

2226
01:24:42,256 --> 01:24:43,724
GUIDE COMMUNITY ORGANIZATIONS IN

2227
01:24:43,724 --> 01:24:46,493
THE RESEARCH PROCESS, DO PSH AND

2228
01:24:46,493 --> 01:24:47,060
CEACR HAVE LANGUAGE ACCESS 

2229
01:24:47,060 --> 01:24:55,669
PLANS?

2230
01:24:55,669 --> 01:24:57,938
>> MINE WILL BE BRIEF, BUT
YES, 

2231
01:24:57,938 --> 01:25:01,041
CEACR IS WORKING IN AN OFF THE 

2232
01:25:01,041 --> 01:25:04,778
SHELL PROJECT IN EQUITY AND 

2233
01:25:04,778 --> 01:25:05,045
RESEARCH.

2234
01:25:05,045 --> 01:25:10,884
WE ARE VERY FORTUNATE TO WORK 

2235
01:25:10,884 --> 01:25:12,419
WITH DR. RAGAVIN IN THE 

2236
01:25:12,419 --> 01:25:17,658
UNIVERSITY OF PITTSBURGH 

2237
01:25:17,658 --> 01:25:18,725
FOCUSSED ON LANGUAGE EQUITY 

2238
01:25:18,725 --> 01:25:21,228
RESEARCHER IN RESEARCH.

2239
01:25:21,228 --> 01:25:23,397
SO WE HOPE TO BE SHARING AND 

2240
01:25:23,397 --> 01:25:24,031
DISSEMINATING THAT IN THE NEAR 

2241
01:25:24,031 --> 01:25:24,264
FUTURE.

2242
01:25:24,264 --> 01:25:27,134
THANK YOU.

2243
01:25:27,134 --> 01:25:28,635
>> I ALSO MAY HAVE A BRIEF

2244
01:25:28,635 --> 01:25:29,403
RESPONSE GIVEN OUR TIME.

2245
01:25:29,403 --> 01:25:30,938
I WANTED TO ACKNOWLEDGE THE 

2246
01:25:30,938 --> 01:25:31,972
IMPORTANCE OF THAT WORK AND 

2247
01:25:31,972 --> 01:25:36,143
MENTION THAT WE MAY HAVE BEEN AT

2248
01:25:36,143 --> 01:25:41,315
IT AT PCORI IN DIFFERENT ANGLES 

2249
01:25:41,315 --> 01:25:43,250
AND THINK ABOUT THIS IN THE WORK

2250
01:25:43,250 --> 01:25:45,752
ONGOING GIVEN TO THE TYPES OF 

2251
01:25:45,752 --> 01:25:50,657
SUPPORTS AND RESOURCES AND TOOLS

2252
01:25:50,958 --> 01:25:52,125
IN THE ENGAGEMENT PROCESS AND 

2253
01:25:52,125 --> 01:25:54,728
SOME WAY I TALKED ABOUT THE 

2254
01:25:54,728 --> 01:25:55,929
WEBINAR TOOL KITS TO BUILD 

2255
01:25:55,929 --> 01:25:58,966
COMMON GOALS IN LANGUAGE FOR THE

2256
01:25:58,966 --> 01:26:00,467
NON RESEARCHER AND COMMUNITY TO 

2257
01:26:00,467 --> 01:26:03,036
BE ACTIVE AND EQUAL PARTICIPANTS

2258
01:26:03,036 --> 01:26:09,309
IN RESEARCH AND WE ALSO ARE VERY

2259
01:26:09,309 --> 01:26:11,445
ATTENTIVE TO A TRANSLATION 

2260
01:26:11,445 --> 01:26:14,114
CENTER WE UTILIZE TO HELP US 

2261
01:26:14,114 --> 01:26:15,849
TRANSLATE WHAT IS TRADITIONAL 

2262
01:26:15,849 --> 01:26:17,217
SCIENTIFIC LANGUAGE INTO THE WAY

2263
01:26:17,217 --> 01:26:19,686
PEOPLE IN COMMUNITIES CAN REALLY

2264
01:26:19,686 --> 01:26:21,989
RECEIVE IT AND ACCESS THAT 

2265
01:26:21,989 --> 01:26:24,291
INFORMATION AND THAT WE USE FOR 

2266
01:26:24,291 --> 01:26:26,793
DIFFERENT COMPONENTS OF OUR WORK

2267
01:26:26,793 --> 01:26:27,894
INCLUDING RESEARCH RESULTS WE 

2268
01:26:27,894 --> 01:26:29,529
WANT DISSEMINATED BACK TO 

2269
01:26:29,529 --> 01:26:31,298
COMMUNITIES AND ORGANIZATIONS.

2270
01:26:31,298 --> 01:26:36,036
I WOULD MAYBE COMMENT THAT AT 

2271
01:26:36,036 --> 01:26:37,337
PCORI THERE'S A MULTIPRONGED 

2272
01:26:37,337 --> 01:26:39,339
APPROACH BUT NOT ARTICULATED IN 

2273
01:26:39,339 --> 01:26:40,741
A COMPLETE PLAN IN HAD THE WAY 

2274
01:26:40,741 --> 01:26:42,275
FDA AND OTHERS HAVE STARTED TO 

2275
01:26:42,275 --> 01:26:43,176
DO THAT.

2276
01:26:43,176 --> 01:26:44,311
SO IT'S A VERY IMPORTANT COMMENT

2277
01:26:44,311 --> 01:26:46,780
AND HELPS ME TO THINK AS WELL 

2278
01:26:46,780 --> 01:26:47,848
ABOUT HOW WE MIGHT ADVOCATE THE 

2279
01:26:47,848 --> 01:26:50,517
EFFORTS WE HAVE GOING ON AND 

2280
01:26:50,517 --> 01:26:54,888
READILY AVAILABLE.

2281
01:26:54,888 --> 01:26:55,856
>> THANK YOU BOTH.

2282
01:26:55,856 --> 01:26:57,424
WE HAVE A LOT OF MORE QUESTIONS 

2283
01:26:57,424 --> 01:26:59,426
COMING IN BUT WE HAVE THREE 

2284
01:26:59,426 --> 01:27:01,928
MINUTES LEVEL AND HAVE AN 

2285
01:27:01,928 --> 01:27:05,599
EXCELLENT PANEL SO THE FOLKS 

2286
01:27:05,599 --> 01:27:07,067
SENDING ME THEIR QUESTIONS 

2287
01:27:07,067 --> 01:27:07,934
SEPARATELY I'LL SHARE THEM WITH 

2288
01:27:07,934 --> 01:27:10,771
OUR PANELISTS OFFLINE AND TRY TO

2289
01:27:10,771 --> 01:27:12,172
SHARE THEM WITH NIH COLLEAGUES 

2290
01:27:12,172 --> 01:27:13,240
AS BROADLY AS POSSIBLE.

2291
01:27:13,240 --> 01:27:14,474
ONE QUESTION WE WANTED TO DIRECT

2292
01:27:14,474 --> 01:27:17,110
TO ALL OF YOU TO HELP CLOSE US 

2293
01:27:17,110 --> 01:27:19,579
OUT IS WITH EVERYTHING YOU HAVE 

2294
01:27:19,579 --> 01:27:22,149
EACH HEARD TODAY, PLEASE SHARE 

2295
01:27:22,149 --> 01:27:24,251
ONE THING THAT GIVES YOU HOPE 

2296
01:27:24,251 --> 01:27:25,786
FOR THE FUTURE OF MEANINGFUL 

2297
01:27:25,786 --> 01:27:27,154
COMMUNITY ENGAGEMENT IN 

2298
01:27:27,154 --> 01:27:29,289
RESEARCH.

2299
01:27:29,289 --> 01:27:33,794
STARTING WITH DR. COOK.

2300
01:27:33,794 --> 01:27:35,929
>> A LOT OF HOPE.

2301
01:27:35,929 --> 01:27:38,365
IT MAY BE STEMMING FROM THE FACT

2302
01:27:38,365 --> 01:27:42,602
THAT I WAS EVEN IN A SEMINAR 

2303
01:27:42,602 --> 01:27:44,371
YESTERDAY FOCUSSED ON MORBIDITY 

2304
01:27:44,371 --> 01:27:45,238
AND MORTALITY WITH SEVERAL 

2305
01:27:45,238 --> 01:27:46,073
ORGANIZATIONS AND GROUPS.

2306
01:27:46,073 --> 01:27:47,607
ONE OF THE THINGS THAT I WALKED 

2307
01:27:47,607 --> 01:27:50,377
AWAY WITH IS THE LEVEL OF 

2308
01:27:50,377 --> 01:27:51,712
PASSION AND DEDICATION THAT IS 

2309
01:27:51,712 --> 01:27:56,349
PRESENT IN THE COMMUNITIES THAT 

2310
01:27:56,349 --> 01:27:58,285
I THINK HAVE THE INTENT OF THE 

2311
01:27:58,285 --> 01:28:00,153
WORK WE THINK ABOUT IN THE 

2312
01:28:00,153 --> 01:28:01,354
RESEARCH COMMUNITY AS RESEARCH 

2313
01:28:01,354 --> 01:28:02,856
FUNDERS, ETCETERA.

2314
01:28:02,856 --> 01:28:04,791
AND I THINK THAT HOPE IN THE 

2315
01:28:04,791 --> 01:28:06,993
PARTNERSHIP AND THE WAY IN WHICH

2316
01:28:06,993 --> 01:28:09,262
WE DO THIS COMES FROM THE FACT 

2317
01:28:09,262 --> 01:28:10,997
THAT WE'VE LEARNED SO MUCH OVER 

2318
01:28:10,997 --> 01:28:13,767
THE LAST DECADE OR TWO THAT 

2319
01:28:13,767 --> 01:28:17,871
WE'RE STARTING TO SEE BEING 

2320
01:28:17,871 --> 01:28:18,839
IMPLEMENTED AND CONTINUALLY 

2321
01:28:18,839 --> 01:28:20,640
UPPING THE GAME, SO TO SPEAK, IN

2322
01:28:20,640 --> 01:28:23,443
TERMS OF HOW WE DO THIS.

2323
01:28:23,443 --> 01:28:25,245
I JUST THINK THAT MAYBE THE GOAL

2324
01:28:25,245 --> 01:28:27,347
OR CHALLENGE FOR ALL OF US IS TO

2325
01:28:27,347 --> 01:28:29,382
MAKE SURE THAT WE MAINTAIN THAT 

2326
01:28:29,382 --> 01:28:31,952
COLLECTIVE COMMITMENT TO THE 

2327
01:28:31,952 --> 01:28:34,221
ACTION BECAUSE WE CAN'T DO IT 

2328
01:28:34,221 --> 01:28:34,588
ALONE.

2329
01:28:34,588 --> 01:28:37,224
WE HAVE TO DO THIS TOGETHER AND 

2330
01:28:37,224 --> 01:28:39,860
THERE'S SO MANY WAYS THAT I SEE 

2331
01:28:39,860 --> 01:28:40,494
THE INFRASTRUCTURE CHANGING FOR 

2332
01:28:40,494 --> 01:28:41,762
SUCCESS.

2333
01:28:41,762 --> 01:28:45,031
SO I'M EXTREMELY HOPEFUL.

2334
01:28:45,031 --> 01:28:47,334
SORRY TO GO A LONG WAY THERE 

2335
01:28:47,334 --> 01:28:48,802
BUT -- 

2336
01:28:48,802 --> 01:28:49,936
>> THAT'S OKAY.

2337
01:28:49,936 --> 01:28:51,905
IT'S NICE TO HEAR HOPE AND UP 

2338
01:28:51,905 --> 01:28:52,606
SPIRATION.

2339
01:28:52,606 --> 01:28:55,108
LIZ AND THEN AL AND MYLYNDA.

2340
01:28:55,108 --> 01:28:56,510
>> I'LL JUST SAY I THINK
THE 

2341
01:28:56,510 --> 01:29:00,347
WORK HAS ALWAYS BEEN THERE AND 

2342
01:29:00,347 --> 01:29:03,283
THE FACT IT'S GETTING NATIONAL 

2343
01:29:03,283 --> 01:29:05,919
RECOGNITION GIVES ME GREAT HOPE.

2344
01:29:05,919 --> 01:29:09,656
I'VE BEEN DOING IT LONG ENOUGH 

2345
01:29:09,656 --> 01:29:10,624
TO HAVE REMEMBERED IT BEING 

2346
01:29:10,624 --> 01:29:13,093
DISMISSED AND I THINK WE HAVE 

2347
01:29:13,093 --> 01:29:14,261
GAINED ENOUGH TRACTION AND 

2348
01:29:14,261 --> 01:29:15,896
ATTENTION THAT IT'S BEING TAKEN 

2349
01:29:15,896 --> 01:29:18,064
MUCH MORE SERIOUSLY AND I'M SO 

2350
01:29:18,064 --> 01:29:19,466
DELIGHTED TO BE PART OF A PANEL 

2351
01:29:19,466 --> 01:29:21,601
LIKE THIS OF PEOPLE WHO ARE 

2352
01:29:21,601 --> 01:29:23,103
SERIOUS SCIENTISTS ABOUT THE 

2353
01:29:23,103 --> 01:29:24,538
SCIENCE OF COMMUNITY ENGAGEMENT 

2354
01:29:24,538 --> 01:29:25,605
AND I THINK WE'RE JUST GOING TO 

2355
01:29:25,605 --> 01:29:28,074
SEE IT GROW FROM HERE.

2356
01:29:28,074 --> 01:29:30,844
AND I LOVE THAT PEOPLE ARE MORE 

2357
01:29:30,844 --> 01:29:32,946
ENGAGED CIVICALLY, 

2358
01:29:32,946 --> 01:29:34,681
SCIENTIFICALLY AND IN EVERY WAY.

2359
01:29:34,681 --> 01:29:38,518
I'LL KICK IT OVER TO MYLYNDA, 

2360
01:29:38,518 --> 01:29:44,658
WHO IN  -- INSPIRES ME DAILY, BY

2361
01:29:44,658 --> 01:29:44,958
THE WAY.

2362
01:29:44,958 --> 01:29:46,726
>> AL DO YOU WANT TO GO
FIRST?

2363
01:29:46,726 --> 01:29:48,295
>> I'M MOST ENCOURAGED AND

2364
01:29:48,295 --> 01:29:50,630
HOPEFUL THAT WE WILL CONTINUE TO

2365
01:29:50,630 --> 01:29:54,534
SEE A RECOGNITION OF THE VALUE 

2366
01:29:54,534 --> 01:29:56,469
OF COMMUNITY THAT IS ALSO 

2367
01:29:56,469 --> 01:30:00,040
COUPLED WITH THE NECESSARY 

2368
01:30:00,040 --> 01:30:00,273
SUPPORT.

2369
01:30:00,273 --> 01:30:02,542
FOR DR. COOK, I THINK AND THE 

2370
01:30:02,542 --> 01:30:04,411
WORK YOU'RE DOING IN PARTICULAR,

2371
01:30:04,411 --> 01:30:06,079
THE FACT YOU CALLED OUT 

2372
01:30:06,079 --> 01:30:07,280
COMPENSATION TO THE COMMUNITY 

2373
01:30:07,280 --> 01:30:10,917
AND PATIENT GROUPS IS REALLY A 

2374
01:30:10,917 --> 01:30:12,586
MAJOR STEP IN THE RIGHT 

2375
01:30:12,586 --> 01:30:12,953
DIRECTION.

2376
01:30:12,953 --> 01:30:14,821
I THINK MOVING FORWARD I WOULD 

2377
01:30:14,821 --> 01:30:17,657
LOVE TO SEE MORE OF THAT 

2378
01:30:17,657 --> 01:30:19,426
EXPLICIT LANGUAGE.

2379
01:30:19,426 --> 01:30:22,028
I'M HOPEFUL THAT THAT BECAUSE 

2380
01:30:22,028 --> 01:30:23,263
YOU DID IT, OTHERS WILL BEGIN TO

2381
01:30:23,263 --> 01:30:28,235
DO IT AS WELL.

2382
01:30:28,235 --> 01:30:30,203
>> SO MY -- LAST WORD.

2383
01:30:30,203 --> 01:30:33,940
>> MY LAST WORD ABOUT HOPE
IS AL

2384
01:30:33,940 --> 01:30:35,742
RECENTLY VISITED PITTSBURGH AND 

2385
01:30:35,742 --> 01:30:37,711
WE WERE ABLE TO ATTEND A 

2386
01:30:37,711 --> 01:30:40,347
COMMUNITY EVENT AND TABLE 

2387
01:30:40,347 --> 01:30:40,614
TOGETHER.

2388
01:30:40,614 --> 01:30:44,150
AND IF YOU ARE EVER DOWN ON YOUR

2389
01:30:44,150 --> 01:30:46,119
HOPE, GO BACK TO TABLING AND GET

2390
01:30:46,119 --> 01:30:49,189
TO A COMMUNITY ENGAGEMENT EVENT.

2391
01:30:49,189 --> 01:30:54,160
GET OUT THERE IN THE COMMUNITY.

2392
01:30:54,160 --> 01:30:57,330
IT REINVIGORATES MY HOPE EVERY 

2393
01:30:57,330 --> 01:31:00,000
TIME AND REMINDS ME WHY WE GET 

2394
01:31:00,000 --> 01:31:01,568
UP EVERY DAY AND WORK HARD TO DO

2395
01:31:01,568 --> 01:31:02,035
THIS.

2396
01:31:02,035 --> 01:31:04,971
IT'S JUST THE ABSOLUTE SOURCE OF

2397
01:31:04,971 --> 01:31:05,338
ALL INSPIRATION.

2398
01:31:05,338 --> 01:31:08,275
SO THAT'S MY HOPE.

2399
01:31:08,275 --> 01:31:09,042
>> THANK YOU ALL.

2400
01:31:09,042 --> 01:31:11,478
I KNOW WE'RE ONE MINUTE OVER BUT

2401
01:31:11,478 --> 01:31:12,612
I'M GOING TO GO AHEAD AND THANK 

2402
01:31:12,612 --> 01:31:13,546
YOU ALL FOR JOINING.

2403
01:31:13,546 --> 01:31:14,881
WHAT AN AMAZING PANEL.

2404
01:31:14,881 --> 01:31:17,083
IT'S GOING TO BE VIDEOCAST AND 

2405
01:31:17,083 --> 01:31:18,218
RECORDED SO PLEASE SHARE AS 

2406
01:31:18,218 --> 01:31:21,955
WIDELY AS POSSIBLE AND I WILL AC

2407
01:31:21,955 --> 01:31:23,890
ACTUALLY LET GEORGE MENSAH HAVE 

2408
01:31:23,890 --> 01:31:26,626
THE LAST WORD AND CLOSE US OUT.

2409
01:31:26,626 --> 01:31:28,828
DO YOU WANT TO SAY ANYTHING?

2410
01:31:28,828 --> 01:31:29,963
YOU'RE ON MUTE.

2411
01:31:29,963 --> 01:31:31,264
>> YOU SAID IT ALL.

2412
01:31:31,264 --> 01:31:32,365
THIS HAS BEEN OUTSTANDING.

2413
01:31:32,365 --> 01:31:34,701
THIS IS SUPERB.

2414
01:31:34,701 --> 01:31:36,002
THANK YOU AND OUT OF RESPECT FOR

2415
01:31:36,002 --> 01:31:37,537
YOUR TIME I'M GOING TO STOP 

2416
01:31:37,537 --> 01:31:38,471
THERE.

2417
01:31:38,471 --> 01:31:40,340
THIS IS FANTASTIC SO THANK YOU.

2418
01:31:40,340 --> 01:31:41,808
>> THANK YOU VERY MUCH,
ALL.

2419
01:31:41,808 --> 01:31:44,311
THIS WAS VERY WELL DONE.

2420
01:31:44,311 --> 01:31:44,911
THANK YOU SO MUCH FOR JOINING.

2421
01:31:44,911 --> 01:31:45,245
>> THANK YOU.

2422
01:31:45,245 --> 01:31:45,312
 

2423
01:31:46,513 --> 01:31:47,113
>> HAVE A GREAT DAY,
EVERYONE.

2424
01:31:47,113 --> 01:31:47,180