>> WELCOME TO THE SECOND DAY OF THE NATIONAL ADVISORY BOARD FOR MEDICAL REHABILITATION RESEARCH FROM THE NIH. FOR THOSE OF YOU THAT ARE INTERESTED IN CATCHING UP ON THIS MEETING, THE FIRST DAY AND THIS DAY ARE BOTH GOING TO BE AVAILABLE AT THE NIH VIDEO CAST SITE OR YOU CAN CONTACT US DIRECTLY FOR THAT INFORMATION AND FOR THE WE'LL TALK ABOUT THE NIH DATA SHARING PLAN AND RESEARCH AND UPDATE ON DIVERSITY, EQUITY AND INCLUSION AT NIH AND INTERESTING DISCUSSIONS ABOUT COVID AND HOW THAT INTERSECTS WITH PEOPLE WITH DISABILITIES AT MULTIPLE LEVELS. A REVIEW OF NIH NCMR INFRASTRUCTURE SUPPORT AND COMMENTS FROM RETIRING MEMBERS AND IDEAS FOR WHAT SHOULD BE HAPPENING AT FUTURE ADVISORY BOARD MEETINGS. WITH THAT, I'LL TURN IT OVER TO OUR CHAIR, ERIC PERRAULT, AND LET HIM START THE MEETING. THANK YOU. >> GOOD MORNING. EVERYONE. WELCOME BACK TO THE SECOND DAY OF OUR NATIONAL ADVISORY BOARD MEETING. THE FIRST ITEM TODAY IS AN UPDATE ON THE NIH REHABILITATION RESEARCH PLAN AND I'D LIKE TO INVITE THERESA CRUZ TO GIVE US UP THAT UPDATE. >> THANK YOU, ERIC, BEFORE I JUMP IN, I WANTED TO GIVE TWO QUICK UPDATES FROM YESTERDAY. WE TALKED ABOUT THE NEW RECOVER CLINICAL TRIALS RESEARCH OPPORTUNITY ANNOUNCEMENT AND THERE'S A TECHNICAL WEBINAR A AT 4:00 P.M. ON FRIDAY AND IF YOU WANT TO APPLY ATTEND THAT TECHNICAL ASSISTANCE WEBINAR AND THE SECOND ANNOUNCEMENT IS TO CONGRATULATE Dr. DIANA BIANCHI. I WAS HOPING THE E-MAIL WOULD COME OUT YESTERDAY WHEN SHE WAS HERE BUT THE SECRETARY EAS'S E-MAIL DIDN'T COME OUT BUT SHE'S A FINALIST FOR A SAMMY AWARD, WHICH IS THE OFFICIAL NAME IS THE SERVICE TO AMERICA MEDAL NAMED AFTER SAMUEL J. HEYMAN, WHO WAS THE FOUNDER OF THE PARTNERSHIP FOR PUBLIC SERVICE AND THIS IS PUBLIC SERVICE WEEK AND IT IS A HUGE HONOR FOR Dr. BIANCHI TO BE NOMINATED AND A FINALIST IN THIS AWARD CEREMONY. IT'S FOR HER WORK ON COVID-19 AND BRINGING ATTENTION TO THE NEEDS OF UNDERSERVED POPULATIONS. SO WORE VERY PROUD OF HER AND I WANT TODAY DO THAT PLUG REAL QUICK. ELIZA, CAN I GET MY SLIDES PLEASE. THANK YOU. SO, TODAY I WOULD ACTUALLY LIKE TO START WITH ALICIA ROSS, WHO IS THE PROGRAM ANNALIST FOR NCRR AND WE ARE GOING TO TAG-TEAM THIS PRESENTATION. AS PART OF OUR RESPONSIBILITIES TO YOU ALL, WE ARE ASKED BY CONGRESS EACH YEAR TO REPORT OUT ON THE PROGRESS OF THE REHABILITATION RESEARCH PLAN AND WE TYPICALLY DO THAT IN DECEMBER BUT WE WERE A LITTLE DELAYED IN GETTING SOME OF THE DATA CLOSED OUT BECAUSE OF CONTINUING RESOLUTIONS AS WELL AS THE COVID-19 EPIDEMIC SO, WE WEREN'T ABLE TO GIVE YOU ALL THE DATA WE WANTED TO IN DECEMBER SO WE HAVE A LITTLE BIT OF A MINI UPDATE THAT WE'RE GOING TO CATCH UP WHAT WE COULDN'T PROVIDE LAST TIME. ALICIA WILL DO THE FIRST PART OF IS THIS PRESENTATION AND I'LL DO THE SECOND. FELICIA, YOU WANT TO COME ON CAMERA. >> YES, I A POLL EYES APOLOGIZE, I'M HAVING AN UNSTABLE CONNECTION. I MAY HAVE TO STOP MY VIDEO. THANK YOU SO MUCH, THERESA. GOOD MORNING, EVERYONE. JUST TO PROVIDE SOME DISCLAIMERS, AND BACKGROUND FOR THIS DATA, ALL DATA IS PRESENTED, DRAFT UNTIL IT'S FINALIZED BY FINANCIAL MANAGEMENT AND AS THERESA STATED WE HAD A DELAY FOR THE 2020 DATA DUE TO CONTINUING RESOLUTIONS AS WELL AS COVID-19. THE INITIAL INFORMATION WAS PROVIDED IN DECEMBER OF 2021 AND ALL UPDATED DATA WILL BE PROVIDED DURING THIS SESSION. IT'S IMPORTANT THAT, AS WE MOVE ALONG THE PRESENTATION, YOU THINK ABOUT THINGS THAT YOU WOULD LIKE FOR US TO TACKLE. WE REALLY APPRECIATE YOUR FEEDBACK. CAVEATS WILL ALSO BE PRESENTED AS NEEDED. SO, OUR AGENDA, THE OVER ARCHING STRATEGY I WILL PROVIDE AS WELL AS THE CODING PROCESS, FISCAL YEAR 2020 TRENDS, AS WELL AS FISCAL YEAR DATA AND THERESA WILL FOLLOW-UP WITH THE NCMRR DATA AND CHALLENGES AND FUTURE DIRECTIONS. OUR OVER ARCHING STRATEGY, MY PREDECESSOR, JENNIFER JACKSON, STARTED THIS BACK IN 2016 AND TOOK DATA FROM 2015 TO TRAIN THE DATA. EACH YEAR WE USE THE REHABILITATION RESEARCH CONDITION AND DISEASE CATEGORY WHICH IS IS THROUGH THE NIH REPORTER. IT'S VERIFIED AS FAR AS DOLLARS AT NIH AND ANY INTERMURAL PROJECTS ARE REMOVED. EACH PROJECT IS CATEGORIZED INTO TWO-TIERS. THE FIRST TIER BASICALLY TAKES THE SIX PRIMARY REHAB THEMES AND GIVES THEM THAT CODE. YOU SEE THE THEMES HERE, A-F. AND THEN THE SECOND TIER, TELLS US THE PHASE OF EACH RESERVE PROJECT WHETHER IT'S BASIC, DISEASE-RELATED BASIC, APPLIED, TRANSLATIONAL OR CLINICAL INFRASTRUCTURE AND UNABLE TO CATEGORIZE. THE ALGORITHM IS USED 2015-2018 FISCAL YEAR DATA TO CLASSIFY ANY 2019 DATA. THIS IS ALSO DONE EACH SUBSEQUENT YEAR FOR THE 2020 DATA IT'S DONE THAT WAY TOO SO IT CATEGORIZES 2015 THROUGH 2019 DATA TO APP TO HIGHS THE VALUES AND THEN NCMR CHECKS THE CODING USING THE CODING SPRUCE IN 2020. WE HAD 533 NEW AWARDS. EACH PROJECT WAS SEPARATELY CHECKED BY TWO CODERS AND THEN RECONCILED FOR AGREEMENT. WHEN THAT IS DONE, WE SEND THE DATA TO EACH IC FOR THEM TO CONFIRM OR REVISE ANY OF THE CODING FOR EACH GRANT. AND AFTER THAT IS DONE, THE GRANTS ARE COMPILED FOR FINAL APPAL SIS. HERE WE SEE THE FISCAL YEAR 2020 DATA AND THERE WERE 1,963 GRANTS AND THIS IS HOW THEY WERE BROKEN DOWN BY RESEARCH FUNDING MECHANISMS. RESEARCH GRANTS, TRAINING GRANTS, OTHER RESEARCH, AND SUCH AND ON THE RIGHT, YOU WILL SEE HOW THE GRANTS ARE BROKEN DOWN BY ICs AND BECAUSE WE HAVE ABOUT 30 DIFFERENT ICs IN THIS WHOLE PORTFOLIO, WE'VE JUST GIVEN YOU THE TOP 10 AND NINDS, NICDD, NIA AND SUCH. THIS GRANT SHOWS US THE FUNDING FOR THOSE 1,963 GRANTS AND HOW IT'S BROKEN DOWN. YOU WILL SEE, THE RESEARCH GRANT IS STILL A LARGE COMPONENT OF THE FUNDING. IN THE NUMBER OF PROJECTS, IT WAS 66% AND HERE IT'S 64% BUT THERE'S SOME BREAKDOWN PROVIDING AN EXAMPLE OF OTHER RESEARCH WHICH IS 18% OF THE TOTAL FUNDING HERE BUT IN THE NUMBER OF PROJECTS, IT'S 5% AND THAT IS BECAUSE A LOT OF TIMES THE OTHER RESEARCH GRANTS ARE 45s AND R23s THEY HAVE A LARGE RESEARCH COMPONENT WHICH YOU KNOW NEEDS MORE FUNDING. AND THEN YOU WILL SEE THE TOP ICs THAT ARE SUPPORTING FUNDING THAT IS CONSISTENT WITH THE TOTAL NUMBER OF GRANTS. THIS THEN SHOWS US THE CLINICAL TRIALS DATA. ABOUT A QUARTER OF OUR GRANTS ARE DESIGNATED AS CLINICAL TRIALS. AND THEN THIS IS THE FUNDING FOR THOSE CLINICAL TRIALS. FOR ALL FISCAL YEAR 2020 NEW GRANTS, THIS IS HOW THE PRIMARY THINGS WERE BROKEN DOWN AND ABOUT 40% OF OUR 533 GRANTS, FALL UNDER THE RESEARCH DESIGN METHODOLOGY OF THE THEME. THEME D. AND THEN ON THE RIGHT, THE GREEN GRAPH WILL SHOW YOU HOW IT'S BROKEN DOWN BY DOLLARS AND OF THOSE GRANTS, 2,000,300 -- I'M SORRY -- $232.5 MILLION IS THE FUNDING BREAKDOWN OF THAT. AND THEN THIS SHOWS US THE TIER 2 CATEGORY FOR THOSE GRANTS SO WHAT TYPE OF RESEARCH ARE WE PERFORMING WITH THOSE 533 GRANTS. YOU WILL SEE HERE THAT APPLY CLINICAL IS ABOUT 58% AND FOLLOWED BY APPLY TRANSLATIONAL THE FUNDING IN GREEN AND 81% IS APPLIED CLINICAL. THIS IS A BUBBLE PLOT OF THE PRIMARY AND SECONDARY THEME SO FOR EACH NEW GRANT SO THIS IS TYPE ONE AND TYPE 2 GRANTS, FROM THE CATEGORY THIS SHOWS HOW EACH GRANT BASICALLY PAIRS TO EFFORTS, NIH EFFORTS, TOWARDS ADDRESSING THE NIH REHABILITATION RESEARCH THEMES SO THIS IS HOW WE'RE DOING YOUR TRENDS. NEXT SLIDE. SO IN 2020 THE NUMBER OF GRANTS WITH THE PRIMARY CODE TRANSLATIONAL SCIENCE HAS INCREASED BY ABOUT A QUARTER SO WE WENT FROM ABOUT 90 GRANTS TO ABOUT 140 GRANTS. BASICALLY WE ARE GOING UP THE NUMBER 6 GRANTS IS INCREASING WHICH SAY GOOD THING, AS WELL AS THE FUNDING. THE BLUE CHART ON THE LEFT IS THE NUMBER OF GRANTS AND THE GREEN CHART ON THE RIGHT IS THE FUNDING FOR THOSE GRANTS. AND THIS SHOWS OUR TRENDS FOR THE TIER 2, THE TYPE OF SCIENCE FOR THOSE NEW GRANTS AND HOW THEY ARE FARING. THERE IS A LOT OF CONSISTENCY BUT FOR APPLIED CLINICAL AND APPLIED TRANSLATIONAL, THE NUMBER OF GRANTS ARE INCREASING WHICH MEANS THAT OUR WORK IS GETTING TO PATIENTS VIA CLINICAL TRIALS AND STUDIES THAT DIRECTLY BENEFIT HUMANS. NEXT SLIDE. HERE SHOES DATA WE RETRIEVED FROM NIH REPORTER THAT BASICALLY SHOWS 10 YEARS OF FUNDING AT NIH AS WELL AS THE NUMBER OF GRANTS AND YOU WILL SEE THE INCREASE IN THE NUMBER OF GRANTS AS WELL AS THE FUNDING BY YEAR. NEXT SLIDE. THERESA IS GOING TO NOW TAKE US TO THE NEXT SECTION OF NCM FUNDING AND INVESTIGATORS. >> THANK YOU, ALICIA. AND MAYBE WE'LL PAUSE HERE TO SEE IF THERE ARE ANY QUESTIONS ABOUT THE SLIDES THAT ALICIA PRESENTED. YOU KNOW, I THINK THE STORY THAT IT TELLS HAS BEEN PRETTY CONSISTENT OVER THE LAST FEW YEARS THAT THERE ARE SOME YEARS OF THE RESEARCH PLAN THAT AREN'T GETTING AS MANY AWARDS AS THE OTHERS, PARTICULARLY THEME B. BUT WE ARE SEEING AN INCREASE, ESPECIALLY IN THE LAST COUPLE OF YEARS AND WE'VE HAD TARGETED EFFORTS THERE. THE OTHER THING THAT I WOULD POINT OUT IS THAT I THINK THAT RELATES TO THE ABLEISM TOPIC THAT WE DISCUSSED YESTERDAY THAT MAYBE SOME OF THESE COMMUNITY ARE FAMILY-RELATED RESEARCH PROJECTS MIGHT BE ADDRESSED THROUGH ABLEISM RESEARCH. I GUESS THE LAST POINT I WOULD MAKE IS THAT WE'VE SEEN THIS NICE, STEADY INCREASE ACROSS NIH AND I THINK FROM THE EARLIER PLOTS THAT YOU SAW THAT NCMRR AND NICHD IS ONLY ONE PIECE OF THE REHAB PORTFOLIO AT NIH AND WE HAVE GREAT COLLABORATIONS AND ALL MAJOR CONTRIBUTORS TO RETABTATION RESEARCH. I DON'T WANT TO NAME PEOPLE BECAUSE I'M SURE I WILL LEAVE SOME OUT. >> YOU HAVE TWO HANDS UP THERE. >> I DO. I CAN'T SEE HANDS, I'M SORRY. CAN SOMEONE CALL ON THEM FOR ME. >> PEPE. >> THANK YOU. THANK YOU, ALICIA FOR YOUR PRESENTATION. COULD YOU CLARIFY FOR ME, WHEN ARE YOUR SLIDES YOU DIVIDED GRANTS THAT WERE IDENTIFIED WITH A CLINICAL TRIALS AND I WONDER HOW IS THAT POSSIBLE? AS FAR AS I KNOW, YOU APPLIED FOR A GRANT YOU HAD TO SPECIFY WHETHER YOU ARE A CLINICAL TRIAL OR NOT. CAN ARE CLARIFY THAT FOR ME? >> SURE. SO SOME OF THESE ARE FROM BEFORE WE MADE THOSE CHANGES AND THERE'S ALSO INFRASTRUCTURE THAT DOESN'T HAVE THE DESIGNATION. WE'RE TRYING TO GET BETTER ON THAT AND YOU ARE RIGHT, THERE ARE GAPS IN THE DATA. >> THANK YOU. >> YOU HAVE ERIC. >> THANK YOU FOR THAT PRESENTATION. I HAD A QUICK QUESTION IF I HEARD THE NUMBERS CORRECTLY. I THOUGHT I HEARD THAT ONLY 25% OF THE PROJECTS WERE CLINICAL TRIALS AND ON THE OTHER HAND, LARGE NUMBER, WELL OVER 50, WERE APPLIED. APPLIED CLINICAL OR TRANSLATIONAL. HOW DO THOSE TWO THINGS GO TOGETHER? SO CLINICAL TRIALS GO IN WE'RE TALKING ABOUT NEW AWARDS AND WE SHOWED YOU THE NEW CATEGORIES AWARDS IN THE TIER 2 BUT THE CLINICAL TRIALS AND COMPETING SO GRANTS THAT HAD STARTED PREVIOUSLY SO THE UNIVERSE IS DIFFERENT BETWEEN THOSE TWO. I APOLOGIZE IF THAT WASN'T >> THANK YOU, FOR THAT PRESENTATION. THERESA, I THINK TOUCHED ON WHAT I WANT TODAY ASK ABOUT WHICH IS, THE THEME B CONTINUES TO BE LAGGING BEHIND AND THIS JUST CONTINUES TO BE BEHIND AND THE NUMBER OF OBLIGATIONS, EVEN SO IS SHOWING THAT IT'S INCREASING A LITTLE BIT AND IT'S REALLY, REALLY TINY AND YET THIS IS A REALLY BIG, BIG PROBLEM BY ITSELF AND IT MAY LEAD TO THIS STRATEGIC PLAN BECAUSE IT'S A BIG PROBLEM. AND I'M WONDERING WHETHER THE COMPLEXITY OF IT IS WHAT MAKES IT MAYBE SO DIFFICULT FOR PEOPLE TO WRAP THEIR HEADS AROUND AND SUBMIT APPLICATIONS BUT I GUESS, I WANTED TO FIND OUT IF YOU GUYS HAVE DONE ANYTHING TO TRY TO ANALYZE BARRIERS SO IT CAN BE A LITTLE BIT MORE DOABLE OR FUNDABLE. >> THERE'S A COUPLE THINGS WE CAN DO SO ONE LIKE WE TALKED ABOUT YESTERDAY, WE CAN DO SOME TARGETED FO ANTI-SEMITISM IN THAT AREA AND WE ARE ONLY CATEGORIZING THE GRANTS THAT WERE FUNDED WE'RE NOT LOOKING AT THE WE HAVEN'T LOOKED AT THE OTHER 80% SO WE NEED TO FIND A BETTER WAY TO LOOK AT THAT 80% AND SEE IF WE CAN MATCH THOSE TO THE THEMES AS WELL AND WE CAN START PIECING APART, ARE WE NOT EVEN GETTING THE APPLICATIONS AND ARE THEY COMING FROM -- ARE THEY BEING ASSIGNED TO INSTITUTES THAT HAVE SMALLER OR TOUGHER PAY LINES? IT CONTINUES TO BE A GLARE DEFICIT IN THE RESEARCH PORTFOLIO AND WE NEED TO PIECE THE PART WHERE THOSE AND FIGURE OUT IT'S COMPLEX, PROBABLY, WE'RE LOOKING AT MORE COMMUNITY-BASED PARTICIPATORY RESEARCH BUT IT'S NOT A HUGE AREA FOR US RIGHT NOW SO, I WELCOME YOUR SUGGESTIONS. >> HOW DO WE CREATE THESE COHORTS AND CREATE THESE COLLABORATIONS? HOW DO WE INCENTIVIZE THE KINDS OF RESEARCH THAT WE WANT TO GET INTO? WE HAVE THE BARRIER -- I SHOULDN'T SAY BARRIER BUT NIH MERRMER AND WE HAVE TO CONSIDER WHY THINGS GET FUND BUD IT'S AN ESSENTIAL QUESTION THAT WE HAVE TO THINK ABOUT FROM THE PROGRAMMING SIDE. >> ONE ADDITIONAL PIECE OF DATA THAT WOULD BE NICE, AND YOU JUST ALLUDED TO THIS IS KNOWING THE GRANTS THAT COME IN VERSUS THOSE THAT ARE FUNDED? IS THAT EASY TO COMPILE? >> IT'S GETTING EASIER. >> I'M CURIOUS HOW MUCH THE REVIEW PANELS ARE SHAPING WHAT GETS FUNDED AND THE QUALITY OF THE PROPOSALS AS WELL. >> ERIC JUST TO TACKLE ON TO THAT TOO, R CDC DOESN'T COMPLY DATA FOR APPLICATIONS SO IT WOULD BE MORE DIFFICULT TO COLT PILE THE DATA FOR APPLICATIONS. IT'S EASIER TO COMPILE THE ACTUAL FUNDED APPLICATIONS VERSUS THE APPLICATION THAT'S COME IN THAT DON'T GET FUNDED SO IT WOULD BE MORE OF A EFFORT FOR THAT BUT IT WOULD DEFINITELY BE DONE. >> GREAT, THANKS. >> OK. IN THE INTEREST OF TIME -- >> I SEE A QUESTION. THANK YOU FOR THE INFORMATION. HISTORICALLY AT NIH, YOU HAVE BEEN MINDFUL OF THE NEW INVESTIGATORS COMING INTO PROMOTE THE GROWTH OF THE FIELD BY BRINGING IN INNOVATIVE YOUNGER PEOPLE WE ALL DEPEND ON FOR THE FUTURE, MAYBE I MISSED IT, BUT IN THE DATA IS IT POSSIBLE TO SEE SOME OF THAT? >> YES, I WILL GET TO THAT IN A LITTLE BIT OF THE SECOND PART OF THE PRESENTATION. WE CAN DO SOMETHING MORE THOROUGH ON HA FOR MAY IF YOU'D LIKE. >> THANK YOU. >> NEXT SLIDE. SO, ALICIA BROUGHT YOU THROUGH THE KIND OF BIG ALL NIH REHAB. I'M GOING TO TALK A LITTLE BIT MORE ABOUT THE NCMRR PORTFOLIO AND WHERE WE HAVE A LITTLE BIT MORE CONTROL OVER THE LEVERS THAT WE PULL. SO HERE IS OUR 10-YEAR FUNDING TREND. AND YOU MIGHT ASK ABOUT 2013, THAT WAS WHEN WE HAD SEQUESTRATION SO THAT WASN'T A GREAT YEAR FOR US AND AFTER THAT, YOU CAN SEE THAT WE'VE HAD THIS NICE, STABLE INCREASE AND PART OF THAT IS BECAUSE WE ARE SET PERCENTAGE OF THE NICHD EXTRAMURAL BUDGET AND IT'S INCREDIBLY NICE TO PLAN HAVING THAT UNDERSTANDING OF AS NICHD'S BUDGET GOES UP, SO DOES OURS. AND IT ALLOWS US TO COLLABORATE MORE AND TO PLAN MORE WITH THE OTHER ICs. AND SO I THINK THAT THESE ARE GOOD TRENDS AND NEXT SLIDE. SO, FRANCISCO, YOU ASKED ABOUT TRAINING. THE CHART ON THE LEFT SHOWS 93 TRAINING SLOTS. THESE AREN'T ACTUALLY INDIVIDUAL AWARDS THEY'RE TRAINING SLOTS, COMPARED TO THE 117 THAT WE'RE DOING IN OUR RPGs, RESEARCH PROJECT GRANTS SO I THINK THAT OUR COMMITMENT TO TRAINING IS VERY CLEAR HERE. AND YOU CAN SEE THAT IN THE DOLLAR. WE'RE FUNDING ABOUT 10% OF OUR BUDGET GOES TO TRAINING AND CAREER DEVELOPMENT WHEREAS THE NIH AVERAGE IS ABOUT 5% SO WE ARE VERY COMMITTED TO THAT NEXT GENERATION BUT NOW WE'VE GOT TO THEM INTO INTO THE RO1 RIGHT SO THAT'S THE FIRST STEP. NEXT SLIDE. SO, I'M INCLUDING THIS SLIDE BECAUSE THIS IS WHAT KEEPS ME UP AT NIGHT. SO WE HAVE THIS KIND OF NICE INCREASING SLOPE OF THE TOTAL BUDGET BUT IN ANY GIVEN YEAR, THE AMOUNT OF AVAILABLE DOLLARS MEANING DOLLARS THAT HAVEN'T BEEN COMMITTED TO THE OUT YEARS OF A PREVIOUS AWARD, VARIES WILDLY. SO SOME YEARS WE'VE GOT LESS THAN 10 MILLION AND OTHER YEARS WE HAVE CLOSER TO 22 OR $23 MILLION. AND TRYING TO BALANCE THAT AND BE GOOD STEWARDS AND PLAN FOR THE FUTURE, WHEN WE DON'T ALWAYS KNOW WHAT OUR NEXT YEAR'S BUDGET IS, IS SOMETHING THAT THE STAFF TAKES VERY SERIOUSLY AND IT'S JUST AN ADDED COMPLICATION WHEN WE'RE COMING UP WITH PAY LINES AND YOU MIGHT WONDER WHY THEY VARY FROM YEAR TO YEAR AND PART OF IT IS BECAUSE OF AVAILABLE DOLLARS. NEXT SLIDE. WHEN WE TALKED IN DECEMBER YOU HAD SPECIFIC QUESTIONS ABOUT WHAT GRANT MECHANISMS ARE AND NCMRR INVESTIGATORS ARE USING AND AND PARTICULARLY THE RO1s, HOW DOES THE AVERAGE COST OF THAT COMPARE ACROSS FROM NCMRR TO THE REST OF NIH? AND ARE WE BEING EQUITABLE IN OUR DOLLARS OR IS THE RICH GETTING RICHER? SOME SOME PIs GETTING MULTIPLE GRANTS AND OTHERS ARE NOT. SO WE'VE TRIED TO TOUCH ON SOME OF THOSE ANSWERS HERE. SO, THE GRAPH ON THE LEFT IS SHOWING THAT WE ARE GETTING LOTS OF DIFFERENT APPLICATION TYPES SO OUR PIs ARE USING THE BREAD ETH OF NICHD'S MECHANISMS AND CLEARLY R01s ARE WHERE WE'RE GETTING OUR APPLICATIONS AND SO THAT IS WE TALKED ABOUT THE RO1 BEING THE BREAD AND BUTTER WITH YOU IT'S WHERE OUR MONEY IS FOCUSED BUT I DO. >> WE WERE ABOUT 10% OR 15% UNDER THE AVERAGE AND WE HAVE THESE MULTI-DISCIPLINARY TEAMS AND YOU ARE WORKING SO, I THINK THIS IS -- I WAS SURPRISED TO SEE WE WERE A LITTLE BIT UNDER. I'M NOT SAYING EVERYONE SHOULD PUMP THEIR BUDGETS 10% BUT IT'S SOMETHING FOR US TO THINK ABOUT MAKING SURE YOU ALL HAVE THE MONEY YOU NEED DO THE WORK THAT YOU ARE ASKING FOR. THERE WERE CONCERNS ABOUT THE NUMBER OF PIs THAT WERE FUNDING. WE HAVE THE CONTACT PIs HERE AND THAT GIVES YOU THE IDEA OF HOW MANY NEW RO1s ARE BEING ADDED EACH YEAR AND WE COULD KIND OF DIVIDE WHEN THERE ARE MULTIPLE PIs AND WE ATTRIBUTE PERCENTAGES OF GRANTS TO PIs AND WE DECIDED TO KEEP IT A LITTLE BIT SIMPLE. YOU CAN SEE WE'VE HAD THIS NICE GROWTH IN THE NUMBER OF R1s AND THE NUMBER OF PIs ON THOSE RO1s AND WE ALSO LOOKED TO SEE HOW MANY PIs HAVE MULTIPLE RO1s AND HAVE -- THESE ARE NCMRR ONLY. PIs WITH MULTIPLE RO1s OR COSTS OF OVER A MILLION DOLLARS A YEAR. THE NUMBER OF PIs WITH THAT KIND OF FUNDING FROM NIH WAS REALLY QUITE, QUITE SMALL. AND A HANDFUL SO WE DIDN'T REALLY FEEL COMFORTABLE POSTING THAT DATA AND GIVEN HOW FEW PEOPLE WANT US TO BE BUT YOU KNOW, THERE ARE CERTAINLY OTHER THOUGHTS ABOUT HOW -- I'M GETTING AN INTERNET IS UNSTABLE AND SO I HOPE YOU ARE STILL SEEING ME. AND THAT ABOUT HOW TO DISTRIBUTE GRANT FUNDING SO THAT -- >> THERESA. WE'RE HAVING A LITTLE BIT OF AN A SECOND. WHILE SHE'S REJOINING US ARE THERE ANY QUESTIONS THAT PEOPLE HAVE SO FAR ABOUT THE TALK? THERE SHE IS. I'M SORRY, WHEN DID I LOSE YOU ALL? WE GOT MOST OF IT. JUST THE LAST FEW SECONDS. >> THERE'S A NIGHTMARE. NEXT SLIDE. OK. SO I THINK WE HAVE MAYBE 10 MINUTES FOR DISCUSSION. AND WE DO HAVE THE GRANT MECHANISMS AND AGAIN I THINK THAT THERE ARE SOME THIS WE COULD ENCOURAGE MORE USAGE AND WE LOOKED AT THE NUMBER OF PIs THAT ARE FUNDED AND FOUND A REALLY LOW OCCURRENCE OF PIs THAT HAD KIND OF EXCESSIVE AMOUNTS OF NIH FUNDING AND WE'RE HOPING TO DO A MORE DEEPER DIVE EITHER AT THE DECEMBER I WILL ADD A QUOTE TO SHOW OUR ESI IN NEW INVESTIGATOR FUNDING. >> I HAVE A QUESTION RELATED WITH THE MPIs OR IN GENERAL, IT'S A TEAM SCIENCE AND IT'S IMPORTANT FOR IN OVATION AND IT WOULD BE GREAT TO HAVE AN IDEA OF THAT COMPOSITION OF GRANTS. AND IT RELATES TO MAYBE THOSE GRANTS THAT RENEW RIGHT SO IT WAS DECOMPETITION AND THE PIs. I THINK THAT WOULD BE USEFUL INFORMATION. >> WE CAN PULL THE NUMBER OF MPI GRANTS THAT NCMRR AND HOW MANY WE AWARD AND SEE IF THERE'S DISCREPANCIES AND THERE AS THEY DO AS THE SINGLE PIs. THAT'S OK. AND I THINK YOU WERE ALLUDING TO THE RENEWAL OF IT. >> IT MIGHT BE RELATE TODAY THAT TOO, RIGHT. >> WE DIDN'T LOOK AT THE SUCCESS OF TYPE 2s AND RENEWAL AWARDS BUT IN GENERAL, ACROSS NIH, THEY ARE MORE SUCCESSFUL THAN TYPE ONE SO FIRST SUBMISSIONS BUT WE HAVEN'T DOUG INTO THAT FOR OR PORTFOLIO SPECIFICALLY. >> THANK YOU FOR THAT BREAKDOWN. JUST A QUICK QUESTION ABOUT THE AVERAGE COST OF THE RO1s. YOU HAVE A SLIDE WHERE IS THAT THE COST PER YEAR BAYS THE MODULAR BUDGET GOES TO 2450 A YEAR AND THE AVERAGE COST OF A RO1 IS CLOSER TO 450 ARE 500. AM I GETTING THIS CORRECTLY. >> THAT'S THE TOTAL COST. >> THE INCORRECT ONE. >> OK. SO, S IT'S IMPORTANT THAT THIS IS THE TOTAL COST, NOT JUST DIRECT COST, BUT THAT IS THE TOTAL COST PER YEAR SO, STILL, THE POINT REMAINS THAT ARE THEY CREATING A DETAILED BUDGET BECAUSE THEY'RE GOING OVER THE MODULAR -- I MEAN THE MODULAR HAS BEEN IN PLACE FOR OVER 20 YEARS, PERHAPS. WE ARE LOOKING AT NEW WAYS TO DO BUDGETS AND WHAT IS THERE HAVE BEEN BUDGET CAPS ARE THAT IN EFFECT FOR A LONG TIME THAT SEEM OUTDATED AND THE DEFINITION OF A LARGE BUDGET, FOR EXAMPLE, AT 500,000 YOUR INSTITUTIONS STILL WANT DETAILED BREAKDOWNS SO WE HAVEN'T HEARD THAT THAT WOULD BE A TIME. >> THE GRAPHIC SHOWS THAT WE HAVE INVESTIGATOR ACTIVITIES CODES MEANING FROM DP1 TO UO1 IN THE BLUE SHAPE, I WAS TRYING TO SINGLE OUT THE K99 THE R00s WHICH ARE A FANTASTIC MECHANIC ANYMORE THAT DOES DONE A LOT TO BRING IN YOUNGER INVESTIGATORS BUT IT'S HARD TO READ WHICH IS WHICH. THAT'S JUST A QUICK COMMENT JUST ON THE GRAPHIC. >> IT'S VERY HARD BECAUSE IT'S SMALL. THERE'S NOT A LOT OF THEM. >> THAT TOO, YEAH. OK. I WAS TRYING TO GET TO THAT PIECE OF INFORMATION BECAUSE AN INNOVATIVE MECHANISM THAT THE NIH HAS COME UP WITH RESENDLY. >> IT LOOKS LIKE THERE'S ONE OF TEACH IN 1010 IF I REMEMBER THAT PROPERLY. >> YEAST. >> THANK YOU, THERESA. >> YEAH. >> I LOVE THIS ANALYSIS BECAUSE IT KEEPS US KNOW WHAT IS GOING ON WITH THE TRENDS IN TERMS OF FUNDING. I DO RECALL THE NEW RO3 THAT IS A SPECIAL MECHANISM THAT WAS EXPANDED WHICH IS REALLY GOOD THAT YOU ARE EXPANDED TO $200,000 INSTEAD OF $50 BECAUSE YOU CAN DO SO MUCH WITH THE $50 ANYMORE. IT'S BEEN AT LEAST A FEW YEARS SINCE THAT HAS BEEN IMPLEMENTED AND I WAS TRYING TO SQUINT TO SEE IF WE ARE SEEING ANY TRENDS IN THAT AREA OR IS IT A SMALL WORK ON YOUR PARTS. >> IT'S NOT MORE WORK BECAUSE WE'VE ALREADY DONE THAT AND MARIA WE'RE GOING TO THINK ABOUT HOW WE'RE BUDGETING RESOURCES TO THAT PARTICULAR WE HAD OUR LAST DUE DATE ABOUT SIX WEEKS AGO SO BE ON THE LOOK OUT FOR. >> IT'S A SPECIAL USE OF THE RO3 MECHANISM TO HELP EARLY CAREER FACULTY TO GET STARTED ON THE NIH TRACK. THE EARLY CAREER RO3. >> DAWN, DO YOU HAVE A QUESTION? >> THANK YOU. I WANTED A COMMENT TO YOUR POINT ABOUT THE COST OF REHABILITATION RESEARCH. YOU KNOW, I WOULD SEND TO AGREE WITH WHAT YOU SAID THAT IS REHAB RESEARCH MORE EXPENSIVE AND I'M TALKING TO INVESTIGATORS WHO ARE LOOKING AT INTERVENTION THAT'S HAVE MAYBE MULTI COMPONENTS OR A PHYSICAL SUCH AS EXERCISE COMBINED WITH OTHER THINGS AND AND IT COMES PLUS AND AND DIVERSIFIED BY HAVING MULTI SITES BY MULTIPLE PLACES IT GETS EXPENSIVE SO I APPRECIATE YOUR RECOGNITION OF THAT AND I GUESS I HAVE A COMMENT AND HOPE THAT CONTINUES TO BE LOOKED AT THAT TO GET EQUAL LOGICALLY VALID RESEARCH AND. >> WE NEED TO DO IT RIGHT AND WE CAN DO IT RIGHT, WE KNOW THOUSAND DO IT RIGHT. IT'S ON MY MIND. >> GREAT, TIME FOR ONE MORE QUESTION. I'D LIKE TO GO BACK TO THE K99ROO. WHY ARE THERE SO FEW APPLICATION APPLICATIONS? ARE THEY TRACKING THE CURRENT DEVELOPMENT OF THIS ROs AND HOW THEY'RE DOING WHEN THEY GO THROUGH THIS? >> FOR THE SECOND PART, THERE ARE SO FEW OF THEM THAT YES, WE KNOW WHO THEY ARE. BUT NICHD MORE BROADLY TRACKS THE K99s AND WE HAVE TO REPORT OUT ON THAT TO NIH AND ARE PEOPLE TRANSITIONING AND OVERWHELMINGLY, THEY DO. THEY ARE VERY SUCCESSFUL IN GETTING INDEPENDENT FACULTY POSITIONS AND WHY DO WE GET SO FEW? IF YOU ARE NOT THINKING ABOUT PUTTING IN A K99 IN YOUR FIRST YEAR OF A POSTDOC YOU ARE GOING TO BE TOO LATE. YOU CAN ONLY DO IT AND YOU HAVE TO BE IN THE K # 9 FOR A YEAR SO YOU HAVE TO THINK IN YOUR FIRST O.>> SO WE AS MENTORS WE NEED TO BE ACTIVE IN THIS OPPORTUNITY TO STUDENTS, RIGHT? I MEAN, I HAVE TWO THAT AND I REALLY HOPE IT'S MORE APPLICANTS FOR THIS PRODUCT. >> NCMR HAS ACCESS TO A SPECIAL USE OF THE KO1 MECHANISM SO PEOPLE DO CAREER DEVELOPMENT AND WE HAVE THESE K12 NETWORKS OF KA ROACAREER DEVELOPMENT SUPPORT SO THERE ARE OTHER OPTIONS FOR THEM AS WELL SO WE'RE SPREADING THE WEALTH. >> THANK YOU. >> THANK YOU. IT'S PROBABLY TIME FOR US TO TRANSITION. THANK YOU, THAT WAS VERY INFORMATIVE AND I WANT TO HAND THE FLOOR OVER TO RALPH WHO WILL INTRODUCE THE NEXT SPEAKER. >> SO, WORE GOING TO SHIFT GEARS A BIT AND TALK ABOUT DATA SCIENCE AND I WANT TO Dr. REBECA ROSEN WHO IS NEW TO NICHD AND SHE'S THE OFFICE OF DATA SCIENCE AND SHARING AT NISICHAWASIHK WHERE SHE OVERSEES SHE WAS IN THE OFFICE OF TECHNOLOGY DEVELOPMENT AND COORDINATION IN MENTAL HEALTH AND THE PROGRAM LEAD FOR NIMH IN TERMS OF DATA ARCHIVING AND TODAY SHE'S GOING TO TALK TO US ABOUT THE IMPLEMENTATION OF THE NEW NIH DATA SHARING POLICIES. I APPRECIATE YOU CONNECTING WITH US AND I LOOK FORWARD TO YOUR TALK. I'M ON THE ROAD IN A HOTEL ROOM AND I'M NOT USED TO THIS. >> YOU ARE FINE. >> OK. ARE YOU SHARING SLIDES OR SHALL I? IF YOU CAN SHARE RIDES THAT WOULD BE GREAT. I DON'T WANT TO TAKE ANY AND THANK YOU FOR THE KIND INTRODUCTION AND I DO APPRECIATE IT AND IT'S REALLY NICE TO MEET WITH YOU ALL. I'M GOING TO GIVE YOU A GRIEF PRODUCTION TO THE NEW OFFICE THAT NICHD AND WE'LL TALK ABOUT THE NEW AND WE'LL TALK ABOUT HOW NICHD LED BY OUR OFFICE IN PARTICIPATION WITH MANY WILL BE IMPLEMENTING THE POLICY FOR OUR STAFF AND FOR OUR RESEARCHER COMMUNITY AND WE SHOULD HAVE SOME TIME FOR Q&A AS WELL AND PLEASE GO AHEAD AND POSE QUESTIONS OR RAISE YOUR HAND AND ASK ME IN THE MIDDLE BECAUSE I HAVE SLIDES GOING THROUGH THE POLICY AND SO AS I DO IS THAT, WE HAVE A NEW OFFICE, WE ARE IN THE OFFICE OF THE OFFICE OF THE DIRECTOR AS I SAID WE ARE THE OFFICE OF DATA SCIENCE AND SHARING. WE WERE STOOD UP IN 2021 WHEN I JOINED IN JULY AND WE WERE FORMED AS AN ACTIVITY IS WE SEE A CULTURE OF BOTH RESPONSIBLE AND USE OF DATA AND BIOSPECIMENS THAT ACCELERATES RESEARCH AND IMPROVES HEALTH FOR OUR POPULATIONS AND IN ORDER TO GET THERE WE WILL BOTH BUILD A DIVERSE, SECURE AND INNER OPERABLE DATA SEEKOSIS TOM AND IT'S GOING TO BE ADVISING ON BEST PRACTICES AND FOR HANDING DATA AND SHARING AND USE AND I'M ALL OF THIS IS OF COURSE IN ORDER TO ADVANCE SCIENTIFIC DISCOVERY IN SUPPORT OF OUR MISSION AND AS RALPH SAID THE NEW DIRECTOR AND I HAVE THE DEPUTY DIRECTOR ON THE CALL TODAY AND SHE CAME WITH N NICHD AND WOVE BEEN BUILDING THE OFFICE TOGETHER. WE HAVE A DATA SCHOLAR IN OUR OFFICE JUST FOR CONTEXT, WE'LL HAVE AROUND FIVE STAFF WHEN WE'RE ALL STAFFED UP AND WE ARE A SERVICE OFFICE TO THE ENTIRE INSTITUTE SO OUR PURVIEW COVERS ACROSS EXTRA AND EXTRA MUR CAL AND AQUA SITUATION ACQUISITIONS BECAUSE TH EY'RE IN THE DATA SHARING POLICY. THIS IS WHAT WE DO AND THERE'S A LOT HERE AND I'LL TALK THROUGH BRIEFLY SOME OF TESTIFY AND COME OF IT WE'LL GET TO LATER ON IN THE PRESENTATION. WE SERVE EXTRA AND INTRAMURAL INAK SITUATIONS AND WE'RE AN ALL IC SERVICE OFFICE AND OUR ACTIVITIES FALL UNDER THREE MAIN. TECHNICAL INFRASTRUCTURE AND POLICY IMPLEMENTATION AND COMPLIANCE AND WE ARE A RESOURCE FOR STANDARDS TRAININGS AND PARTNERSHIPS AND WE ARE DEVELOPING OUT OF SECURE AND FEDERATED AND ALSO SUSTAINABLE NICHD RESEARCH DATA AND ECOSYSTEM AND WE HAVE TO FIGURE OUT WHERE WE NEED TO GO AND HOW WE GET THERE AND WE'RE USING DASH AS A CENTRAL POINT AS WE BUILDUP THIS ECO SIS ONLY SO IT NEEDS TO BE MODERNIZE AND IT'S UNDER USE AND WE NEED TO MAKE SURE OUR RESEARCHERS SUBMIT OR USE DATA SO WE NEED TO ENSURE THERE'S INTRA INOPERABILITY AND WE NEED TO PROVIDE SUPPORT FOR RESEARCHERS TO WORK IN THE CLOUD WHEN IT'S PRO PRO AT AND WE'RE NOT A PROGRAM OFFICE AND MANY OF THE DATA REPOSITORY TOOLS, SOFTWARE SHARING AND SO CONSULT WITH STAFF TO THEM THEM IN THEIR FUNDING AND STRATEGIES AND AND WE ARE DEVELOPING 308 SEE AND SO I'M GOING TO DRILL DOWN INTO THESE SPECIFIC TASK AND LATER SLIDES WE NEED TO AND THAT'S WHERE STANDARDS TRAININGS AND PARTNERSHIPS COME IN SO WE WORK HEAVILY, AS I MENTIONED, OUR WORK WITHIN NICHD BUT WE ALSO WORK HEAVILY ACROSS NIH WITH OUR VARIOUS COUNTERPARTS IN THE ICs AND WE DO A FAIR BIT OF COORDINATION AND PARTNERSHIPS WITH THE DEPARTMENT LEVEL WITH OUR OTHER HHS COLLEAGUES AND TO ENSURE HOW THEY USE THIS ECOSYSTEM THAT WE'RE VETTING AND WE'RE WORKING TO PROVIDE EXPERTISE ON ETHICAL AND REGULATORY FRAMEWORK SO MAKING SURE THE WAY THE DATA ARE STORED AND ACCESSED IS APPROPRIATE. NEXT SLIDE, PLEASE. AND I MENTIONED DASH AND THIS IS ALSO A COMPONENT OF OUR OFFICE SO THE DATA AND SPECIMEN HUB IS A PROGRAM IN ODSS AND IT'S BETTER TO USE DASH. IT'S A HUMAN DATA REPOSITORY AND IT COST 200 AWARDS AND THAT NUMBER IS INCREASING RAPIDLY. WE'RE SEEING SECONDARY USE OF THE DATA AND SO UNDER THE OFFICE, WE ARE RECOMPETING THIS IN THE FOCUS IS ON MODERNIZING AND EXPANDING THE SYSTEM. AND NEXT SLIDE, PLEASE. AND OUR OFFICE IS NOT WORKING ALONE. WE ARE BOTH A SERVICE TO THE IC BUT WE VERY MUCH RELY ON THE EXPERTISE OF OUR IC COLLEAGUES AND AND SO WHAT WE WANT TO DO IS LEVERAGE THEIR EXPERTISE AND THEIR ACTIVITIES AND MAKE SURE THAT WE ARE BUILDING A STRATEGY FOR THE WHOLE OF THE INSTITUTE AND THEY'LL TELL US THE COPE OF THE SEEKOSIS TOM AND WHAT ARE OUR PRIORITY USE CASES FOR DEVELOPMENTS SO AND THAT GROUP SUPPOSE AND RUNNING AND WE HAVE NCMR STAFF ON THAT AND WE HAVE TWO POLICY COMMITTEES AND ONE EXTRAMURAL AND ONE INTRAMURAL AND YOU SEE AS I GO THROUGH, WHY WE NEED TO DO THAT FOR NOW. THE DATA MANAGEMENT SHARING IMPLICATION REQUIRES US TO MAKE SPECIFIC DECISIONS TO ADVICE US ON I AM NOT I GUESS OF ALL NIH DATA AND SPECIMEN SHARING POLICIES AND HELP US IDENTIFY WHAT IT IS WE NEED TO BUILD TO SUPPORT THERE'S A LOT OF TRAINING AND HANDHOLDING AND RESOURCE THAT WE NEED TO DO IN-HOUSE OR EVERYONE WHAT IS HAPPENING IN NIH AND THOSE ARE COMING SHORTLY AND NEXT SLIDE, PLEASE. I'M GOING TO JUMP INTO DATA MANAGEMENT AND SHARING AND ASK QUESTIONS OR WE CAN WAIT UNTIL THE END, WHATEVER YOU PREFER. WE HAVE TO START WITH THE CARROTS AND WHY ARE WE DOING THIS? ARE WE SURE IT MATTERS? WE ARE. THERE'S A AMOUNT OF RESEARCH DEMONSTRATING THAT DATA SHARING EMPOWERS NEW SCIENTIFIC QUESTIONS AND INNOVATION AND IT DEMOCRATIZES ACCESS TO RESEARCH DATA. YOU GIVE YOUNG RESEARCHERS ACCESS TO DATA TO GENERATE HYPOTHESIS AND GIVE EXPERIENCE RESEARCH ACCESS TO BIG DATASETS TO DO AI AND MACHINE LEARNING AND EVERYTHING AGAIN. DATA SHARING HELPS TRANSPARENCY AND VALIDATION OF RESEARCH RESULTS AND THAT'S A CORE COMPONENT OF THE NEW POLICY AND I MENTIONED INCREASING STATISTICAL POWER AND COLLABORATION BECOMES POSSIBLE WHEN EVERYBODY IS WORKING IN THE CLOUD, WITH DATA EVERYWHERE AND INTERFACES YOU CAN REALLY BRING TOGETHER DATA SCIENTISTS AND BUY OLE AND OF COURSE IT FACILITATES THERAPEUTIC AND DIAGNOSTIC STRATEGIES FOR PATIENTS AND WE'RE GETTING MORE AND BETTER DATA AND WE NEED TO SHARE IT IN A GOOD WAY AND LASTLY, PUBLIC TRUST AND RESEARCH. THE WHITE HOUSE HAS BEEN SENDING DOWN A NUMBER -- THE OFFICE OF SCIENCE AND TECHNOLOGY POLICY IS PUBLISHING REPORTS ON THE NEED FOR SCIENTIFIC INTEGRITY IN GOVERNMENT SCIENCE AND WE CAN DEMONSTRATE THE UNDERLYING DATA THAT LED TO THE FINDINGS WE PUBLISHED AND THE POLICY HAS BEEN OUT SINCE 2020 AND IT WAS PUBLISHED AFTER COPIOUS AMOUNT OF FEEDBACK GATHERING FROM A DIVERSE COMMUNITY AN AND IT COVERS ALL RESEARCH AND ALL APPLICATION AND PROPOSALS SUBMITTED ON OR AFTER THAT DAY AND NEXT SLIDE, PLEASE. SO THIS IS WHERE I MENTIONED ABOUT THE DETAILS AND SO THE POLICY IT DOES NOT REQUIRE INEXTRAMURAL RESEARCHERS AND CONTRACTORS WHO ARE GENERATING SCIENTIFIC DATA MUST PERSPECTIVELY PLAN FOR HOW THAT DATA AND ANY ACCOMPANYING METADATA WILL BE MANAGE AND WILL BE SHARED AND THEY'RE DOING THAT THROUGH THE DEVELOPMENT OF A DATA MANAGEMENT AND SHARING PLAN. AND THAT PLAN IS SUBMITTED IN THE APPLICATION. AND IT IS REVIEWED BY NIH PROGRAMS STAFF. THE COMPLIANCE WITH THAT PLAN IS REQUIRED AND THE WE HAVE LEADERSHIP TO SUPPORT TO IMPLEMENT THIS POLICY BROADLY AND SO EVERYONE IS IN AND WE ARE MAKING SURE THAT WE CAN HELP THEM TO COMPLY WITH THE POLICY. IF WE GENERATE SCIENTIFIC DATA WITH NIH FUNDING YOU ARE COVERED BY THIS NEW POLICY AND AND WITH ANOTHER AWARD' FROM ANOTHER FEDERAL AGENCY AND PRIVATE AND SOMEONE ON THE COLLABORATION AND THAT IS GENERATING SCIENTIFIC DATA IS FUNDED BY NIH THIS POLICY APPLIES AND IT DOES, THERE'S NO LIMIT TO FUNDING LEVEL AND NO RESTRICTIONS ON FUNDING MECHANISMS THAN IS DIFFERENT THAN ANYTHING WE'VE HAD IN PLACE BEFORE AND IT DOESN'T APPLY TO ACTIVITIES THAT DO NOT AGAIN RAID IT'S TO FIGURE OUT IF AN AWARD IS UNDER THE POLICY AND. >> WELL WHAT IS SCIENTIFIC DATA? THIS IS VERY CLEARLY DEFINED IN THE POLICY AND IF WE WANT GUIDELINES AND YOU SHOULD SHARE DATA NOT ASSOCIATED WITH THE PUBLIX INDICATION SO IT'S AN AREA WHERE IT'S A CO COLLABORATION TO FIGURE OUT ABOUT WHAT IS THE APPROPRIATE AMOUNT OF DATA THAT CAN BE SHARED AND IT'S UP TO THE APPLICANT TO DESCRIBE ANY LEGAL ETHICAL OR TECHNICAL FACTORS THAT MAY LIMIT THE ULTIMATE SHARING OF THOSE DATA AND SO THAT HAPPENS WITHIN THE DATA MANAGEMENT AND SHARING PLAN AND THAT THAT IS IN THE JOB TO MAKE DECISIONS ABOUT THAT AND SO IN ADDITION TO REAL CARA BECAME SHIFT FOR OUR APPLICANTS IN RESEARCHERS IT'S A LARGE SHIFT FOR OUR PROGRAM OFFICERS IN OUR ROLES AND SO IS WE ARE PUSHING ON MOST BEING CLOSE TO ALL SO WE ARE WORKING ON GUIDELINES FOR WHAT -- HOW TO REVIEW THE DATA MANAGEMENT AND SHARING PLANS AND -- SO THE TIMELINE IS STRAIGHT FORWARD. YOU HAVE TO MAKE -- YOU HAVE TO SHARE AS SOON AS POSSIBLE BUT PUBLICATIONS ARE THE FIRST DEADLINE AND YOU MUST SHARE NO LATER THAN THE TIME OF AN ASSOCIATED PUB WIL PUBLICATION WHEN A MANUSCRIPT IS E-PUBLISH BUT THEY'RE STILL DEFINING THAT AND ALL THE OTHER DATA THAT ARE NOT ASSOCIATED WITH THE PUBLICATION THAT QUALIFY AS SCIENTIFIC DATA SHOULD BE SHARED BY THE END OF THE PERFORMANCE AWARDS SUPPORT PERIOD AND SO INFORM EXTRAMURAL THIS IS JUST THE END OF THE PROJECT PERIOD AND BEFORE A NEW COMPETITIVE SEGMENT. IF THERE ARE SCIENTIFIC DATA YOU GENERATED AND YOU DIDN'T PUBLISH THEM. BY THE TIME THE AWARD IS OVER, YOU HAVE TO SHARE THE DATA AND SO THIS JUST IS SCHEMATIC OF THE TIMELINE THAT I JUST DESCRIBED. AND SO SO I MENTION THE THIS AS WELL. WHO A PROVES THE PLAN? SO WE DO. NIH PROGRAMS STAFF. SO PROGRAM OFFICERS, WHO RECEIVE APPLICATIONS THAT ARE LIKELY TO BE FUNDED ARE REVIEWING THESE DATA MANAGEMENT AND SHARING PLANS. AND THE PEER REVIEWERS ARE ABLE TO ONLY COMMENT ON THE PROPOSED BUDGET, THEY DO NOT COMMENT ON THE PLAN AND THIS DOES NOT AFFECT THE OVER ALL SCORE. AND THERE'S ONE CAVEAT THERE, IF DATA SHARING AND IT CAN BE A TO THIS APPROACH SO THERE'S SOME SITUATION AND AN WE REVIEW THE PLAN AND DETERMINE IF IT'S ACCEPTABLE OR NOT AND SO THERE'S A PROCESS FOR THAT AND IT WILL HAPPEN DURING JUST IN TIME AND ONCE THE PLAN IS APPROVED, AND IT IS PART OF THE AWARD AND IT CAN BE UPDATE THE SO IT'S WRITTEN IN THE POLICY THAT UPDATES OUR EXPECTED TO BE SUBMITTED AND WHEN MAJOR CHANGES OCCUR IN THE COLLECTION MANAGEMENT OF SCIENTIFIC DATA AND SO THOSE UPDATES CAN BE REVIEWED AT ANY POINT DURING THE PROJECT, THE PERFORMANCE PERIOD AND THEY WILL BE REVIEWED DURING THE RPPR SO WE WILL DO A REVIEW OF PROGRESS ON THE PLAN THAT HAS BECOME A TERM OF A NOTICE OF AWARD. AND THAT LEADS US TO COMPLIANCE AND SO THIS IS ALWAYS A BIG QUESTION. THE POLICY DOES HAVE TEETH. SO AS I SAID, THE PLAN THAT IS AGREED UPON BY THE APPLICANT AND THE PROGRAM OFFICER BECOMES A TERM AND CONDITION OF THE NOTICE OF AWARD AND OF COURSE THAT MEANS IF YOU FAIL TO COMPLY WITH THE TERMS OF CONDITIONS, IT MAY RESULT IN ENFORCEMENT ACTION AND NIH, OER ARE SERIOUS ABOUT ENFORCEMENT AND WE HAVE NOT PUBLISHED ANY ADDITIONAL GUIDANCE ON THIS BUT WE ARE WORKING ON IT AND SO WE ARE STATED IN THE POLICY THAT FAILURE TO COMPLY WITH THE PLAN WILL EFFECT FUNDING AND SO, I WON'T WALK THROUGH A COMPLIANCE ON CONTRACTS AND INEXTRAMURAL BUT WHAT I SAID AT THE BOTTOM HERE, NON-COMPLIANCE MAY BE CONSIDERED FOR FUTURE FUNDING DECISIONS SO THERE ARE TEETH AND WE ARE NOT REALLY FOCUSED ON THE TEETH RIGHT NOW ON OUR EFFORTS FOR POLICY AND IMPLEMENTATION WE'RE FOCUSED ON SUPPORTING THOSE COM REPLIANCE CHECKS AND MAKING SURE OUR PROGRAM STAFF AND THE RESEARCHERS HAVE THE INFORMATION THEY NED TO REALLY CREATE APPROPRIATE PLANS THAT THEY CAN ADHERE TO AND TO WORK THROUGH MODIFICATIONS TO THE PLAN AND ALSO TO HELP ON REPORT INTERESTING THE INVESTIGATOR SIDE AND ALSO TO FACILITATE BASICALLY ROW DUCIN REDUCING ADMINISTRATIVE BURDEN ALL AROUND. SO THERE'S A FAIR BIT OF LANGUAGE IN THE POLICY ABOUT PROTECTING PRIVACY AND CONFIDENTIALITY WHEN HUMAN DATA ARE BEING SHARED AND THIS IS EXPECTED TO BE IN THE PLAN AS WELL. SO THERE IS A GUIDE NOTICE THERE AND A NUMBER OF SUPPLEMENTAL GUIDE NOTICE THEY HAVE PUBLISHED THAT PROVIDE INFORMATION ON APPROPRIATE REPOSITORIES THAT YOU CAN USE AND HOW TO CREATE DATA MANAGEMENT SHARING PLAN AND HOW TO BUDGET FOR DATA MANAGEMENT AND SHARING. AND IN THE DESCRIPTION OF ELEMENTS OF A DATA MANAGEMENT SHARING PLAN THERE'S EXPLANATION ABOUT HOW RESEARCHERS ARE RESPONSIBLE FOR DESCRIBING HOW THEY'RE GOING TO PROTECT THE PRIVACY OF THE PARTICIPANTS AND DATA MANAGEMENT SHARING PROCESSES AND PROTECT THE CON IF DEN SHALITY OF THEIR DATA SO THERE'S AN ENCOURAGEMENT TO DEIDENTIFY DATA TO GET A CERTIFICATE OF CONFIDENTIALITY WHICH YOU ALREADY GET BECAUSE IT'S NIH DATA BUT IT'S WRITTEN IN THE POLICY ANYWAY AND THEN THEY HAVE OTHER PROTECTIVE MEASURES LIKE SHARING YOUR DATA THROUGH CONTROLLED ACCESS DATA REPOSITORIES AND THERE'S AN ENCOURAGEMENT TO HOW IT WILL BE ADDRESSED DURING EARLY AN IN THE RESEARCH DURING THE INFORMED CONSENT PROCESS. AND SO WE'LL WORK ON LANGUAGE WITH THAT AND NEXT SLIDE, PLEASE. AND THIS IS REALLY A REITERATION OF WHAT I SAID AND IT'S JUST NICE TO LOOK AT THINGS IN THE CHRONOLOGICAL ORDER AND SO THAT THE THE PLANNED SUBMISSION IS COMING IN AS AN ATTACHMENT TO THE APPLICATION AND IT SHOWS UP IN THE BUDGET JUSTIFICATION SECTION AND THEN THE PLAN IS ASSESSED. PEER REVIEWERS ARE ONLY COMMENTING ON THE BUDGET AND PROGRAM STAFF ARE ASSESSING THE PLANS AND LIKE I SAID PLANS CAN BE UPDATED AND SO THERE'S REALLY, LIKE I SAID, NOT MUCH NEW BUT THERE'S A NEW WAY TO LOOK AT IT AND SUMMARIZE EVERYTHING I JUST SAID. I MENTION INSIDE SUPPLEMENTAL GUIDE NOTICE AND I ALSO ENCOURAGE YOU TO HAVE A LOOK AT AT THIS AND WE ARE DEVELOPING A BIT BETTER LESS GENERAL GUIDANCE BASED ON THIS WAS WE'RE HEARING FROM OUR COMMUNITIES THAT WE NEED STRUCTURE SO THE ELEMENTS WILL ALWAYS STAY THE SAME AND WE NEED TO HEAR FROM APPLICANTS WHAT TYPES OF SCIENTIFIC, WHAT TYPES OF DATA IN GENERAL ARE YOU COLLECTING AND THEN WHICH OF THOSE DATA WILL BE PRESERVED AND SHARED AND WHAT TOOLS, SOFTWARE AND CODE ARE YOU USING TO COLLECT, MANAGE AND ANALYZE THE DATA AND WHICH TOOLS AND SOFTWARE CAN OTHER RESEARCHERS USE TO REPRODUCE YOUR RESULTS WITH THE ORIGINAL DATASETS AND THE GUIDE NOTICE ASKED ABOUT STANDARDS IF THEY EXIST AND IT'S ACKNOWLEDGING IN THE GUIDE NOTICE THAT NOT ALL DATA AND NOT ALL DOMAINS OF DATA OR RESEARCH HAVE STANDARDS THAT HAVE BEEN AGREED UPON AND CAN YOU STATE THAT IN THE PLAN AND WE'VE ALREADY GONE THROUGH THE TIME LINES AND IT DOES SECRETARY RESEARCHER IDENTIFY WHERE THE DATA ARE GOING AND WE NEED TO BE PREPARED TO TAKE IT SO IT REALLY HELP US TO PLAN WHEN WE SEE EARLY ON THAT A RESEARCHER IS PLANNING TO SUBMIT DATA AND WE CAN START PLANNING INTERNALLY FOR THESE DATASETS COMING IN DOWN THE ROAD AND THE GUIDE NOTICE ASKED TO SEE UNIQUE IDENTIFIERS THAT WILL BE USED TO SUPPORT FIND ABILITY AND ACCESSIBILITY OF THE DATASETS AND HOW LONG DATA WILL BE AVAILABLE SO SUSTAINABILITY IS A BIG QUESTION. AND AS I MENTIONED, THE ACCESS DISTRIBUTION REUSE CONSIDERATION THAT GETS BACK TO A PRIVY CONTROLS THAT ARE DESCRIBED IN THE GUIDE NOTICE AND LASTLY, THERE'S A SPECIFIC ELEMENT LISTED IN THIS GUIDE NOTICE FOR WHO OVERSEES DATA MANAGEMENT AND SO THIS IS INTERESTING BECAUSE YOU MIGHT SAY THE PI IS THE RESPONSIBLE PARTY ON THE WARD AND THAT'S CORRECT, BUT THERE CAN BE A STAFF MEMBER OVERSEEING DATA MANAGEMENT AND THE PROCESS OF GOING THROUGH AND COLLECTING THIS INFORMATION GETS APPLICANTS THINKING THERE'S A LOT HAPPENING HERE AND A LOT OF DIFFERENT PEOPLE AND QUITE A FEW RESOURCE THAT'S ARE NEED TO TAP IN ORDER TO SUCCESSFULLY COLLECT, MANAGE AND SHARE MY DATA AS EXPECTED BY THE POLICY AND IT LEADS THEM TO PLAN FOR THEIR BUDGET PROPERLY SO THERE'S A REAL EDUCATIONAL COMPONENT TO THIS PROCESS. NEXT SLIDE, PLEASE. AND ALLOWABLE COST SO I DID SAY, YOU CAN BUDGET FOR DATA MANAGEMENT AND SHARING AND IT'S EXPECTED AND I HEARD THE CONVERSATION PREVIOUSLY. THIS IS A CHALLENGING ISSUE HERE AND I AM AWARE OF THAT SO YOU HAVE TO BUDGET FOR DATA MANAGEMENT SHARING AND YOU HAVE THIS SAME CAP THAT'S WHAT WE HAVE RIGHT NOW SO WE HAVE GUIDANCE AND IN THIS FROM OFFICE OF SCIENCE POLICY FOR WHAT ARE CONSIDERED REASONABLE COST AND SO CURATING DATA AND DEVELOPING DOCUMENTATION SHARING DATA THROUGH REPOSITORIES AND OTHER LOCAL DATA MANAGEMENT CONSIDERATIONS ARE REASONABLE COSTS BUT INFRASTRUCTURE COSTS AND BASIC RESEARCH THAT DOESN'T COUNT UNDER THE DATA. I MENTIONED THIS OTHER GUIDE NOTICE ABOUT DATA REPOSITORIES AND WE'RE STRONGLY ENCOURAGING THE USE OF ESTABLISHED REPOSITORY AND WE DON'T WANT TO DEVELOP NEW REPOSITORY FOR THE SAKE OF IT BUT WE MAY HAVE TO INVEST IN SOMEWHERE THERE ARE NONE BUT IT'S REALLY, WE DON'T WANT TO BE INVESTING IN NEW DATA REPOSITORIES WE HAVE A NUMBER OF THEM AND WE'RE WORKING WITH OUR EQUAL' SYSTEM WORKING GROUP TO HAVE REPOSITORIES FOR THOSE WHO NEED PLACE TO SHARE THEIR DATA AND THIS LAST BULLET HERE THAT IC MAY DESIGNATE SPECIFIC REPOSITORY WE'RE WORKING CLOSELY WITH OUR ECOSYSTEM WORKING GROUP TO DEVELOP A LIST WE WILL PUBLISH ON OUR WEBSITE WITH AS MUCH INFORMATION ABOUT NICHD IMPLICATION OF THE POLICY. NEXT SLIDE, PLEASE. AND LET'S SEE. I KIND OF WANT TO JUMP PAST THIS BECAUSE I KNOW, I WANT TO GIVE YOU GUYS TIME FOR QUESTIONS AND I ALREADY SPOKE THROUGH WHERE THEY'RE SUBMITTING AND ONE THING THAT IS IMPORTANT HERE, THE PLANS, MAYBE MADE PUBLICLY AVAILABLE AND ANOTHER HUGE PARADIGM SHIFT SO IN ADDITION TO REGISTERING A STUDY AT A GIVEN DATA REPOSITORY, THERE'S A POSSIBILITY THOSE PLANS WILL BE SHARED AND WE DON'T KNOW WHERE IT WILL HAPPEN AND THERE'S NO CENTRAL NIH PLANS AT THIS POINT TO SHARE THEM BUT THE WE ARE TAKING AN INK CONCLUSIVE INCLUSIVE APPROAC H AND I WAS INTRODUCING OUR OFFICE AND WE ARE BRINGING IN DIVERSE STAFF TO ADVICE OUR OFFICE THROUGH THIS GOVERNANCE STRUCTURE AND THAT MAPS BACK TO OUR KEY SERVICE AREAS AND IT'S JUST BEEN WONDERFUL TO SEE ALL OF OUR WORKING GROUPS HAVE BROUGHT MEMBERSHIP FROM EXTRAMURAL AND INTRAMURAL AND OD AND WE MEET REGULARLY AND THEY'VE BEEN GIVING US EXPERT ADVICE ON WHAT WE NEED TO DO AND HOW WE NEED TO DO IT. NEXT SLIDE. PLEASE. AND THIS IS JUST THE EXTRAMURAL SCIENTIFIC BRANCHES SO NCMRR IS NOT ON HERE BUT WE STARTED OUT BY GOING OUT AND TALKING AND LISTENING AND UNDERSTAND WHAT THESE BRANCHES ARE ALREADY DOING IN SPACE OF DATA AND SCIENCE AND SHARING AND WHERE THE GAPS ARE AND HOW WE CAN HELP AND JUST LEARNING ABOUT THE PORTFOLIO, IT WAS NICE, ESPECIALLY FOR SOMEONE WHO IS NEW TO THE INSTITUTE AND WE CERTAINLY MET WITH NCMRR AND WE MET WITH INTRAMURAL AND WE MET WITH SOME OTHER OD OFFICES AND NEXT SLIDE. PLEASE. WE HAVE OUR ECOSYSTEM WORKING GROUP WITH 15 MINUTES COVERING EXTRAMURAL AND INTRAMURAL SCIENTIFIC PROGRAMS AND THEY ARE TELLING US WHAT THIS ECOSYSTEM NEEDS TO LOOK LIKE. WHAT RESEARCHERS WE NEED TO SUPPORT AND WHAT SYSTEMS NEED TO BE PART OF THIS ECOSYSTEM AND HOW WE CAN CONNECT THE PIECES AND PARTS SO OUR STRATEGY IS NOT TO BUILD ONE BIG MONOLITHIC DATA SYSTEM BUT WE'RE TRYING TO DO INSTEAD IS BE SMARTER AND SAVE RESOURCES AND FIND OUT WHERE PEOPLE ARE USING DIFFERENT COMPONENTS AND START TO CONNECT THEM BASED ON HOW RESEARCHERS WANT TO USE THEM. SO WE ARE NOT BUILDING OUT NEW THINGS BUT CONNECTIONS BETWEEN EXISTING SYSTEMS. AND I ALSO ALLUDE TODAY OUR INTRAMURAL AND EXTRAMURAL DATA AND JUST TO CLARIFY THEY'RE ADVISING SOUS WE CAN DEFINE THE NICHD EXTRAMURAL AND INTRAMURAL IMPLICATION OF THIS DATA SHARING POLICY AND OTHERS AS THEY ARISE AND WE ARE, THE KEY HERE IS RESOURCE AND SO WHAT WE'RE DOING NOW IS WE'RE FOCUSED ON DEVELOPING OUT RESOURCE AND BY RESOURCES I MEAN GUIDELINES AND I MEAN WORKFLOWS AND I MEAN, WEBSITE MATERIAL AND YES TO MAKE SURE OUR STAFF AND OUR RESEARCHERS TO HAVE THE ABILITY WITH THE DATA SHARE POLICY. SO WE STARTED OUT WITH A PLAN TEMPLATE AND THIS IS SOMETHING THEY HAVE NOT THOUGHT THROUGH AND NEVER HAD TO DO NOT FOR NIH AT LEAST AND IS THOUGH NIH TWO PAGES WHICH IS SO VALERIE AND I THOUGHT LONG AND HARD ABOUT THIS AND WE SPOKE WITH OUR DATA SHARING COMMITTEES AND WE SPOKE WITH OUR ECOSYSTEM WORKING GROUP AND WITH MANY COLLEAGUES AT OTHER ICs AND WE'RE JUST NOT SO WORRIED ABOUT THE PAGE LIMIT, WORE WORRIED ABOUT MAKING ABOUT THIS IS DEVELOPED IN A WAY THAT TEACHES THE RESEARCHERS HOW TO PUT TOGETHER A PLAN THAT WORKS AND THAT THEY CAN IMPLEMENT BUT IT'S ALSO BUILT IN A WAY THAT FACILITATES PROGRAM STAFF REVIEWING IT AND THEN IT FORMS THE BASELINE FOR SUBSEQUENT UPDATES AND REPORTING AND SO THAT EVENTUALLY WE CAN START DIGITIZING ALL OF THIS INFORMATION AND TRACKING IT WITH REAL TOOLS AND RIGHT NOW, WE DON'T HAVE THE ABILITY TO CREATE COMPUTE ABLE MACHINE READABLE TEMPLATES BUT WE ARE CREATING CREATING THIS ANYWAY BECAUSE WE CAN IS WE REORGANIZED THE EVENT AND WE'VE SPENT TIME GETTING FEEDBACK ACROSS AND AS WELL AS FROM OUR COLLEAGUES ACROSS THE ICs AND FROM OD TO CREATE THE MOST COHERENT AND WELL WORKED AND LEAST BURDEN SOME STRUCTURED FORMAT FOR THE PLAN WE CAN SO WE'RE CLOSE TO COMPLETE NORTH THIS. IT FORMS THE BASELINE FOR OTHER RESOURCE WE SEE NEED TO DEVELOP WHICH INCLUDES SAMPLE PLANS. WHAT IS A SAMPLE PLAN LOOK LIKE? WE CAN GOOD AND AND AND WE HAVE HOW DO WE NEED GUIDANCE FOR PROGRAM STAFF OR HOW TO REVIEW AND WE THINK TO BE REPORTED ON WITH AN ANNUAL BASIS SO THIS IS KIND OF ONE OF THE FOUNDATIONAL COMPONENTS OF OUR RESOURCE STRATEGY. NEXT SLIDE, PLEASE. SO, WE ARE NOT WORKING ALONE. SO OD HAS AN OFFICE AND AND YOU WILL SEE SOME GAPS IN THERE AND THERE ARE NO INFORMATION AND WE COULD SEE WHAT WE NEED TO DO WE ARE POINTING OUR RESEARCHERS AND TRAININGS AS THEY ARISE. SO, I ALREADY WENT THROUGH NEXT STEPS AND WE'RE PRIORITIZING THE RESOURCES AND WE ARE DEVELOPING THEM AND WE ARE DEVELOPING THEM ITERATIVELY SO WE DO THE WORK BASED ON WHAT PROGRAM STAFF TELL US TO DO BASED ON WHAT THEY KNOW ABOUT THEIR COMMUNITIES AND WE WE WORK ACROSS THE NIH AND WE DON'T WANT RESEARCHERS TO THINK THERE ARE 27 IMPLEMENTATIONS OF THIS POLICY AND WE NEED TO MAKE SPECIFIC DECISION TO OUR INSTITUTE AND WE WILL CONTINUE BUILDING OUT THE TECHNICAL AND TO ENSURE THAT RESEARCH WHEN THEY SAY THEY'RE GOING TO PUT THEIR DATA SOMEWHERE THERE'S A PLACE TO PUT IT AND THEY CAN TAKE THEIR DATA AND RELEASE IT THANK YOU FOR HAVING ME HERE AND I LOOK DO WE HAVE ANY QUESTIONS? >> WHY ARE YOU WATCHING YOUR BREATH? IT WAS VERY THOUGHTFUL. >> YEAH, AND PRAGMATIC DISCUSSION. THE FIELD OF ROW HABITATION, WE HAVE TRYING TO DECIDE WHAT IS THE ACTIVE INGREDIENT AND HOW DO YOU QUANTIFY IT AND IT'S OFTEN MULTI-DISCIPLINARY AND COMES FROM A LOT OF DIMENSIONS. THE FACT THAT PEOPLE PREPARE DATA FOR THIS, DO YOU THINK IT'S MAKING SCIENTISTS THINK MORE RIGOROUSLY ABOUT THAT BECAUSE THEY KNOW THEY CAN BE PREPARE IT FOR YOU FOLKS AND WILL YOU BE TRACK TO GO SEE IF YOU INCREASE BEHAVIOR THERE'S AN ELEMENT OF MISTRUST BECAUSE YOU DON'T KNOW THE DATA AND I DO THINK THAT THE DEVELOPMENT OF THESE PLANS IS GOING TO START TO CHANGE HOW PEOPLE REALLY CAREFULLY THINK THROUGH THE WHOLE PROCESS AND ALSO THEY START TO VALUE CERTAIN RESOURCES LIKE THEIR LIBRARIES, LIKE THEIR RESEARCH IT FOLKS AT THEIR INSTITUTIONS AND IT OPENS UP THESE AVS OF PLANNING SO YES, I DO THINK IT'S GOING TO HELP AND I DON'T THINK IT WILL HAPPEN OVERNIGHT AND IT'S GOING TO TAKE TIME. AND ALSO WE CANNOT BECAUSE THESE ARE TWO OF THE PLACES WHERE YOU KNOW, I'M TRYING TO. CDEs ARE A RESOURCE THAT SHOULD BE MENTIONED IN THE DATA MANAGEMENT AND SHARING PLAN IF THEY OCCUR. IT'S COMPLICATED WE DON'T NEED CDEs FOR EVERYTHING AND WE HAVE A LOT OF THEM AND WE STRONGLY ENCOURAGE USING AND WE'LL HAVE IT ON OUR WEBSITE AND IT'S A REQUIREMENT TO REGISTER AND SHARE AGGREGATED FINDINGS BUT IT DOESN'T GET TO THE INDIVIDUAL LEVEL DATA AND THAT'S A HUGE GAP AND THE REPRODUCIBILITY GAP IS AN ISSUE AND THIS CLOSES IT AND WE EXPECT. >> SO THIS WILL BE INCLUDED IN CLINICAL TRIALS, I GUESS AS WELL, RIGHT? >> THAT'S A GREAT QUESTION. SO, YOU KNOW, FOR NOW, CLINICAL TRIALS WILL BE SUBMITTING INDIVIDUAL LEVEL DATA TO DATA REPOSITORY LIKE DASH SO DASH POSTS A NUMBER OF CLINICAL AND AS THIS POLICY GOES INTO EFFECT AND WHAT WE WOULD LIKE IS TO CROSS REFERENCE AND CLINICAL TRIALS AND DASH FOR EXAMPLE AND THE UNIQUE IDENTIFIERS AND THAT'S WHY THE POLICY POINTS TO UNIQUE IDENTIFIERS BECAUSE IT'S THE ONLY WAY YOU CAN MAKE THOSE DECISION AND DOI HELPS US AND IT GETS TO RALPH'S POINT. IT HELPS US DIGITAL OBJECT IDENTIFIERS HELPS US TRACK WHEN THINGS ARE USED BETWEEN SYSTEMS AND WE CAN START TO SEE THE RETURN ON INVESTMENTS AND THERE ARE TOOLS THAT TRACK INTO THESE THINGS AND WE CAN JUST TAP INTO THEM. >> IT'S DATA SUFFICIENT QUALITY AND THAT IS ON THE -- HOW DO WE SAY IS THAT? BECAUSE, YOU KNOW, AND THE WAY OF FINDING THE USE TO. >> IT'S A HARD QUESTION. RIGHT NOW, IF YOU ARE PUBLISHING AN MANUSCRIPT BASED ON ANALYSIS OF A SPECIFIC DATA SET YOU SHOULD BE CONFIDENT OF THE DATA THAT'S WHY YOU ARE SHARING THEM IN A WAY THAT AND THERE'S NOT A DEFINITION AT THIS POINT. >> THE GUIDELINES SPEAK ABOUT DATA THAT DOESN'T REACH THE LIGHT TO A PUBLICATION AND SO THAT IS WHERE MY COMMENT IS. >> IT'S A -- WE'RE THINKING ABOUT LANGUAGE THERE AND THEY CAN BE USED BY OTHER RESEARCHERS IN AN APPROPRIATE I WOULD SUGGEST THIS IS A TOPIC FOR STANDARDS. WE ARE STANDING UNSTANDARDS WORKING GROUP HERE AND WE'RE JUST LASER FOCUSED ON THE POLICY AND INFRASTRUCTURE BECAUSE IT'S COMING BUT WE KNOW AND A NUMBER OF INSTITUTES AND STANDARDS COLLABORATIVE AND THEY'RE ALL TAKING DIFFERENT LEVELS OF A TOP-DOWN BOTTOM-UP COMBINATION APPROACH TO FIGURING OUT WHAT THEIR RESEARCH COMMUNITIES SHOULD BE USING HERE AND SOME ARE SOME ARE POINTING TO EXISTING COMMUNITY STANDARDS. WE WANT TO VET AND RECOMMEND AND TO IDENTIFY GAPS AND SUPPORT AND THE STANDARDS IF THEY'RE NEEDED FOR A SPECIFIC COMMUNITIES. >> LET'S SOMEONE ELSE JUMP IN AND WE HAVE A FEW MORE QUESTIONS. >> OK, GREAT. >> THANK YOU, SO MUCH REBECA FOR THIS VERY BROAD OVERVIEW OF WHAT WE NEED TO BE DOING IN THE FUTURE AND THIS IS GREAT. MY MAIN COMMENT IS IF I WERE OUT THERE IN THE COMMUNITY OF PEOPLE WHO WERE TRANSLATING, SCIENCE INTO THE COMMUNITY, WHICH IS A SIZABLE PART AND HOW DOES IT EFFECT THE SPIR FOR THOSE TRANSLATIONAL EFFORTS INTO INDUSTRY. >> RIGHT. >> SO, THERE ARE EXCEPTIONS AND WE DON'T LIKE TO FOCUS ON EX EXCEPTIONS BUT THERE ARE AND SO IF THERE IS AN EXISTING REGULATION OR A AGREEMENT AND WITH SBAR IT'S 10 OR 20 YEARS WITH THE DATA CAN BE HELD AND THAT SUPERSEDES THE TIMELINE AND IT'S EX ACCEPTABLE TO INDICATE AND THAT GETS TO YOU JUST NEED TO PLAN FOR IT AND YOU NEED TO INCLUDE IN YOUR PLAN WHAT ARE THE CONSTRAINTS. >> BUT IT'S A TIMELINE I'M WONDERING ABOUT. SO, YOU SAID THAT THE PLAN WOULD BE REVIEWED BY STAFF AND I'M WONDERING FROM THE TIME OF NOTICE OF AWARD TO THE TIME WHEN YOUR GROUP REVIEWS, IS IT REQUIRED OF THE PLAN TO COME BACK TO YOU AND WHAT IS THE APPROVAL PROCESS FOR THE PLAN BETWEEN THE TIME WHEN THE PLAN IS BEEN SELECTED FOR FUNDING THESE ARE GREAT QUESTIONS AND THESE ARE QUESTIONS WE ARE WORKING ON RIGHT NOW. WE DON'T HAVE GUIDANCE ABOUT THE WORK FLOW IN AND THEY WILL REVIEW AND IT'S THAT RELATIONSHIP AND SO YOUR SECOND QUESTION ABOUT CHANGES IN THE BUDGET BASED ON CHANGES IN THE DATA MANAGEMENT AND SHARING PLAN IS A VERY AND WE DON'T HAVE AN ANSWER TO THAT RIGHT NOW. I WILL BRING IT BACK TO THE TABLE AND IT'S ALREADY ON THE TABLE AND I WILL REMIND US IN OUR CONVERSATIONS ABOUT THE PRIORITY AND IT'S JUST I THINK THAT WE'RE PRETTY LASER FOCUSED OR NOON WHAT HAPPENS DURING THE APPLICATION PROCESS AND WE'RE CREATING THE RESOURCES TO SUPPORT THAT AND WE CAN KIND OF STEP BAX WHEN ALL OF OF THAT SUPPOSE ON OUR WEBSITE AND ON OUR INTERNET AND WE HAVE THAT PLAN TEMPLATE OUT AND WE CAN START THINKING THROUGH SOME OF THESE NOTABLY VERY COMPLEX QUESTIONS. GREAT. THANK YOU, VERY MUCH. THAT WAS HELPFUL PRESENTATION AND THIS IS AN IMPORTANT INITIATIVE. >> THERESA WOULD LIKE TO INTRODUCE OUR NEXT SPEAKER. >> I'M PLEASE TODAY WELCOME Dr. MARIE BERNARD. THE CHIEF OFFICER FOR SCIENTIFIC WORKFORCE DIVERSITY AND SHE'S THE FORMER DEPUTY DIRECTOR OF THE NATIONAL INSTITUTE ON AGING AND SUPPORTED RESEARCH AND Dr. BERNARD CO-LEADS THE NIH NIGHT INITIATIVE TO END STRUCTURAL RACISM AND I'VE HAD THE PLEASURE OF WORKING WITH Dr. BERNARD ON EFFORTS TO IMPROVE INCLUSION OF PEOPLE WITH DISABILITIES AT NIH AND I'M SO PLEASED SHE COULD SPEND A FEW MINUTES TO TALK TO ALL ABOUT THE WORK THAT HER OFFICE DOES. THE FLOOR IS YOURS. >> THANK YOU SO MUCH. AND I'M REALLY DELIGHTED TO HAVE THE OPPORTUNITY TO TALK WITH YOU TODAY. TODAY. I'M GOING TO GIVE AN UPDATE ON NIH DIVERSITY EQUITY AND INCLUSION AND ACCESSIBILITY ACTIVITIES FROM THE PERSPECTIVE OF MY ROLE. I'M THE CHIEF OFFICER FOR SCIENTIFIC WORKFORCE DIVERSITY AND I CO-LEAD NIH UNITE INITIATIVE AND I CO-LEAD THE INITIATIVE TO DEVELOP NIH WIDE DIVERSITY EQUITY INCLUSION AND ACCESSIBILITY STRATEGIC PLAN. SO, LET ME ELABORATE. FIRST WITH REGARDS TO THE DAIA STRATEGIC PLAN, THIS IS A RESULT OF TWO MANDATES. ONE WAS IN THE NIH BUDGET LEGISLATION FOR FISCAL YEAR '21 PASSED DECEMBER 20th OF 2020 THAT HAD LANGUAGE IN IT THAT REQUIRED THE DEVELOPMENT OF A DIVERSITY EQUITY AND INCLUSION PLAN AT NIH THAT INCLUDED SHORT AND LONG-TERM GOALS TO ADDRESS RACIAL ETHNIC AND GENDER DISPARITIES AT NIH AND IDENTIFY AND ADDRESS BARRIERS AND ACCESS TO NIH FUNDING BY INVESTIGATORS RESEARCHERS HEALIN HEALTH DISPARITIES. THIS LAW, WHEN PASSED, CALLED FOR THE PLAN TO BE DELIVERED WITHIN 180 DAYS. AND NIH RESPONDED THAT THERE WERE A LOT OF THINGS THAT WERE CHANGING AT THAT TIME AND THAT WE WOULD NEED MORE TIME TO IS GIVE A THOUGHTFUL, STRATEGIC PLAN AND WE WERE ABLE TO NEGOTIATE THAT IT WOULD BE DELIVERED SPRING OR SUMMER OF '21 IN THE INTERIM, WE'VE BEEN DOING UPDATES TO CONGRESSIONAL LEADERSHIP WHERE WE ARE IN THE D DEI SPACE. THERE WAS A CHANGE IN EXECUTIVE BRANCH AS OF JANUARY OF 2021. WE HAD AN EXECUTIVE ORDER THAT CAME FROM THE JOE BIDEN ADMINISTRATION AFTER TAKING OFFICE AND MANDATES DIVERSITY EQUITY AND INCLUSION AND ACCESSIBILITY STRATEGIC PLAN FOR THE FEDERAL WORKFORCE. THERE'S A GOVERNMENT WIDE DEIA STRATEGIC PLAN RELEASED IN NOVEMBER OF THIS YEAR THAT GIVES A ROADMAP OF IMPLEMENTING THAT EXECUTIVE ORDER AND AGENCIES WERE CHARGED WITH DEVELOPING THEIR OWN STRATEGIC PLAN BY MARCH 23rd OF 2022 AND I WILL SAY THAT WHEN WE FIRST SAW THAT WE HAD A LITTLE BIT OF ANXIETY AND WHEN THEY WERE SPEAKING IN TERMS OF AGENCIES, THEY WERE TALKING ABOUT OUR OVER ALL AGENCY, THE DEPARTMENT OF HEALTH AND HUMAN SERVICES AND YES, HHS HAS DELIVERED A PLAN. WE AS WHAT IS CALLED AN OPERATING DIVISION, OF HHS HAVE AN OPPORTUNITY TO BE A LITTLE MORE TIME THINKING WHAT IT IS LIKE. THIS WILL COMMUNICATE VISION AND ASPIRATION FORCE NIH AND IT WILL BE BROAD AND WE'LL HAVE DEFINITIONS AND WE'VE BEEN WORKING REALLY HARD ON THESE DEFINITION AND DIVERSITY, EQUITY INCLUSION AND ACCESSIBILITY AND WE HAVE LANGUAGE FROM THE EXECUTIVE ORDERS AND THERE'S SOME AREAS THAT YOU HAVE LOTS OF DIFFERENT DEFINITIONS SO WE'LL WORK ON THAT. WE'LL HAVE EXAMPLES AND PRIORITIES FOR THE NEXT FIVE YEARS AND WE'LL BE WRITING THIS IN A WAY THAT CAN BE MEASURABLE AND A COULDN'T ABLE AND WE'D HAD FEEDBACK FROM THAT AND WE'LL HAVE OPPORTUNITY TO AGAIN WHERE WE ARE IN OUR PROGRESS AT THE ADVISORY COMMITTEE TO THE DIRECTOR MEETING ON JUNE 10th JUNE 10th AT WHICH WE'LL GET MORE MANAGEMENT AND OPERATIONS AND A LITTLE DIFFERENT FROM WHAT YOU MIGHT SEE FROM MOST STRATEGIC PLANS AT NIH BECAUSE USUALLY THE RESEARCH IS LISTED FIRST BUT BECAUSE THIS IS VERY SYSTEMS AND WHEN WHICH THEY IN TERMS OF DIVERSITY WHICH THEY BROADLY AND THINK OF OF INDIVIDUALS AND THIS IS IN KEEPING ACTUALLY WITH THE NIH NOTICE OF AND INTEREST AND IN 2019 AND AS I PRESUME YOU ALL KNOW THESE ARE EXAMPLES AND IT'S NOT EXCLUSIVE LISTING BUT IT INCLUDES INDIVIDUALS FROM RACIAL AND ETHNIC GROUPS THAT HAVE BEEN SHOWN BY THE NATIONAL SCIENCE FOUNDATION TO BE UNDER REPRESENTED AND HEALTH RELATED SCIENCES FOR THE NATIONAL BASIS AND INCLUDES INDIVIDUALS WITH DISABILITIES, INDIVIDUALS FROM A DISADVANTAGED BACKGROUND IF THEY IMMEDIATE TWO OR MORE OF CRITERIA, COMING FROM A BACKGROUND WITH FOOD STAMPS. WOMEN AT THE GRADUATE LEVEL AND BEYOND IN SCIENTIFIC FIELDS. SO, WHAT ARE SOME EXAMPLES 6 OF THING WE'RE DOING? WE WANT SOMETHING WE CALL THE 21st CENTURY SCHOLARS PROGRAM. THE HYPOTHESIS HERE BEING THAT IF WE CAN BUILD A CRITICAL MASS OF DEIA ADVOCATES AMONG OUR EXTRAMURAL PROGRAMS STAFF, THAT MAY TRANSLATE INTO DIFFERENCES IN THE WAY THE FUNDING OPPORTUNITY ANNOUNCEMENTS ARE CONFIGURED AND IN TERMS OF THE SCIENTIST WHO'S GET FUNDED AT NIH AND SO WHAT WE'RE DOING IS TRYING TO DEVELOP AN INCLUSIVE CULTURE BY FOSTERING A COHORT OF THOSE STAFF MEMBERS AND 13-15 AND RECENTLY HIRED STAFF AND THEY MAY END UP BEING THAT SOMETHING THAT WOULD HELP TO ROW CROUT MORE DIVERSE PROGRAM OFFICES AND SCIENTIFIC REVIEW OFFICERS AS WELL THEY GET EXTRA MENTORING FROM SROs AND POs WHO HAVE BEEN A LOT NIH FOR A WHILE AND THEY DEVELOP A COMMUNITY AND THEY ENHANCE THEIR WORK SKILLS. IT'S MODELED AFTER OUR SUCCESSFUL DISTINGUISHED SCHOLARS PROGRAM THAT IS IN THE INTRAMURAL RESEARCH PROGRAM WHICH ALSO BROUGHT TOGETHER COHORTS OF SCIENTIST WHO HAVE A TRACK RECORD IN DIVERSITY AND IN THIS CASE IT WILL TAKE US FOR OUR FIVE YEARS TO GET THAT CRITICAL MASS BUT IT WILL BE INTERESTING TO SEE. IN TERMS OF THE DISSEMINATING THE EVIDENCE, WE STARTED THIS ACADEMIC YEAR WITH WHAT WE CALL THE SIGN TIVE IRK WORKFORCE SEMINAR SERIES AND OUR 2021-2022 SEASON IS SUL MINUT CULMINATING MAY 17th A DDRESS THE QUESTION OF DIVERSITY SCIENCE AND WE'RE EXCITED ABOUT THIS AND WE HAVE AN ALL-STAR GAS, FROM THE OFFICE OF SCIENCE TECHNOLOGY AND POLICY WILL BE GIVING OPENING REMARKS AND Dr. LAUREL SMITH DOOR LOOKS AT DIVERSITY FROM GENDER PERSPECTIVE AND RICHARD FREE MAN HAS A CLASSIC ARTICLE LOOKING AT SOME 2.5 MILLION PUBLICATIONS ANTHEY HAVE LOOKED AT GRANT APPLICANTS OVER THE LAST COUPLE OF YEARS AND DONE AN ASSESSMENT WHETHER DIVERSITY HAS A ROLE IN CREATIVE AND INNOVATION FROM THE SCIENCE BY THOSE APPLICANTS AND Dr. TILLMAN, PAST PRESIDENT OF PRINCETON WILL GIVE CLOSING REMARKS AND WE HAVE A INSTRUCTOR SO THEY'LL BE PRESENTATIONS WITH THE DATA BUT LOTS OF TIME FOR Q&A AND CONVERSATION ABOUT THIS SO GO TO THE WEBSITE AND THERE ARE OPPORTUNITIES TO SIGN UP FOR THIS NOW. AND THEN, ACTING ON THE EVIDENCE, WE KNOW THAT DATA SHOWS THAT MENTORING CAN MAKE A DIFFERENCE IN THE ADVANCEMENT WITH DIVERSE BACKGROUNDS AND WE RELEASED THIS AND LATE FEBRUARY AND APPLICATIONS WE DO EARLY APRIL AND WE WERE OVERWHELMED WITH THE INTEREST IN THE COMMUNITY. AND THERE'S CLEARLY AN UNMET NEED OUT THERE FOR SUPPORT OF MENTORING AS YOU WELL KNOW IT'S NOT FUNDED AND WE WILL DO OUR BEST, WE ARE REALLY EXCITED THAT WE HAVE JUST ABOUT EVERY INSTITUTE AND CENTER AT NIH HAS JOINED US ON THIS AND THIS IS FUNDED OUTSIDE OF THE BUDGET OF THE OFFICE AND I'M HOPEFUL THAT THE INSTITUTE AND CENTERS WILL SEE SOME GOOD APPLICATIONS THAT THEY'LL ALSO PICK UP IF IN THOSE CASES WE AREN'T ABLE TO SUPPORT AND BECAUSE IT'S SUPPOSE AN IMPORTANT PART AND ENHANCING THE DIVERSITY AND THE NIH UNITE INITIATIVE. THIS IS A UNITE INITIATIVE WITH A AUDACIOUS GOAL OF ENDING STRUCTURAL RACISM AS OUR URL SAYS AND IT CAME ABOUT AS A RESULT OF THE EVENTS OF 2020 WHEN WE SAW INDIVIDUALS WITH UNDER REPRESENTED ETHNIC GROUPS AND WE SAW THE VIDEOTAPED MURDER OF GEORGE FLOYD INVADE UNVEILED TO THE DIRECTOR ON FEBRUARY 26th OF 2021 AND WE SAW THE KILLINGS OF SIX ASIAN WOMEN IN ATLANTA. ALL OF THIS REINFORCED AND BROUGHT INTO SHARP RELIEF THE ON GOING REALITY OF RACIAL AND ETHNIC INJUSTICE IN OUR COUNTRY AND IT LED US TO THE FEELING THAT WE COULD NOT BE SILENT AND SO THERE WERE A SERIES OF REALLY INTENSE AND STUDENT DIRECTOR MEETINGS THROUGH THE 2020 SUMMER AND LED TIE SHARED COMMITMENT TO ADDRESS STRUCTURAL RACISM. IT'S LARGER THAN NIH BUT WE HAVE A UNIQUE POSITION WITHIN THE BIOMEDICAL RESEARCH ENTERPRISE AND CAN INFLUENCE SOME THINGS SO WE UNVEILED THE UNITE INITIATIVE EACH LETTER REP TENT REPRESENTS ONE OF FIVE INTERACTING WORK STREAMS AND AS WE DISCUSSED FROM LAST FALL YOU CAN ACTUALLY LOOK AT THE UNITE INITIATIVE AS LOOKING INTO THREE CONTEMPT AREAS AND HEALTH DISPARITIES, MINORITY HEALTH AND EQUITY RESEARCH AND OUR INTERNAL WORKFORCE TO GET OUR OWN HOUSE IN ORDER SO WE CAN ROLE MODEL WHAT WE WOULD EXACT OF THE EXTERNAL WORKFORCE AND SO SOME HIGHLIGHTS. FROM THE STANDPOINT OF HEALTH DISPARITIES MINORITY HEALTH AND HEALTH EQUITY RESEARCH, FROM THE NIH COMMON FUND, WE HAVE NOW COMMITTED UP TO $58 MILLION TO DO TRANSFORMATIVE RESEARCH TO ADDRESS HEALTH DISPARITIES AND ADVANCE HEALTH EQUITY AND THERE WERE 11 AWARDS ANNOUNCED IN OCTOBER. THESE ARE FY '21 AWARDS AND SIX OF THEM TO LOOK AT TRANSFORMATIVE RESEARCH IN GENERAL AND FIVE OF THEM TO LOOK AT TRANSFORMATIVE RESEARCH AT MINORITY-SERVING INSTITUTIONS AND THERE'S AN OPEN COMPETITION FOR ADDITIONAL PROJECTS LOOKING AT MINORITY-SERVING INSTITUTIONS THIS FISCAL YEAR. AND ADDITIONALLY, IN FISCAL YEAR, '23, WE ANTICIPATE THE LAUNCH OF THE COMMUNITY PARTNERSHIPS TO ADVANCE SCIENCE FOR SOCIETY OR THE CUMPAS INITIATIVE AND THIS CAME FROM NEI AND CENTERS ARE INVOLVED AND THAT IDEA HERE IS TO LET THE COMMUNITIES TELL US WHAT THE NEEDS ARE AND WHAT NEEDS TO BE ADDRESSED TO RECTIFY ISSUES OF HEALTH DISPARITIES SO, IT'S A COMMUNITY-DRIVEN HEALTH EQUITY STRUCTURAL INTERVENTIONS AND THERE ARE LOCAL HEALTH EQUITY RESEARCH ASSEMBLIES AND THERE'S A COORDINATING CENTERING WITH A NATIONAL HEALTH EQUITY RESEARCH ASSEMBLY AND COMMUNITY INDIVIDUALS AND THEN THERE'S A SPOKEN HUB ARRANGEMENT WHERE THEIR HEALTH EQUITY RESEARCH HUBS WITH SCIENTIFIC SUPPORT AND PARTNERSHIP WITH THOSE LOCAL GROUPS. WE'RE EXCITED ABOUT THE POSSIBILITIES HERE. WE'RE COMMITTING UP TO 23 TO $52 MILLION PER YEAR FOR THE NEXT 10 YEARS AND TO MAKE THIS GO FORWARD. ADDITIONALLY, WE ARE, AS I SAID, ATTENDING TO OUR OWN WORKPLACE AND AN EXAMPLE OF THAT AND SOMETHING THAT WILL BE VERY VISIBLE WHEN YOU COME TO THE NIH CAMPUS, IS SOMETHING THAT WE'RE CALLING THE POWER OF AN INCLUSIVE WORKFORCE RECOGNITION PROJECT. IT'S A BRAINCHILD OF Dr. JACKSON. SHOWN ON THE BOTTOM ROW, SECOND FROM THE LEFT MANY OF SHE'S A 10 YEAR TRACK SCIENTIST AT OIR RESEARCH PROGRAM AND SHE TALKS VERY ELOQUENTLY ABOUT TALKING THROUGH THE HALLS OF NIH AND NOT SEEING HERSELF REPRESENTED THERE. HOW IT LEFT HER FEELING UNINCLUDED SO THE INTENT IS TO RECOGNIZE ALL WHO CONTRIBUTE TO THE BIOMEDICAL RESEARCH ENTERPRISE SCIENTISTS, NON SCIENTISTS PEOPLE FROM VARIOUS WALKS OF LIFE AND VARIOUS ABILITIES AND RACIAL AND ETHNIC GROUPS AND THIS IS SHOWN IN BUILDING 31 AND THE BUILDING WHERE MOST OF THE INSTITUTES AND CENTERS HAVE THEIR OFFICES AND WHAT YOU ARE SEEING AND THE BOTTOM PANEL ARE JUST OUTSIDE MY OFFICE, MY OFFICE IS IN BUILDING ONE WITH NIH DIRECTORS OFFICES AND I'M TWO FLOORS UP ON THE THIRD FLOOR AND IT'S OUR CURRENT INSTITUTE AND CENTER DIRECTORS WHO ARE SERVING AND I MUST GIVE FRANCIS COLLINS AND NIH DIRECTOR WHO RECENTLY STEPPED DOWN AND HE STEPPED DOWN IN DECEMBER AND WHEN I CAME IN 2008 IT WAS NOT A VERY DIVERSE GROUP OF LEADERS AND NOW THERE ARE 10 WOMEN, TWO AFRICAN AMERICANS. TWO HISPANIC LATINOS, THROW ASIANS AND WE KNOW WE HAVE A LOT OF WORK TO DO BECAUSE THE REST OF NIH IS NOT NEARLY AS DIVERSE, PARTICULARLY IN LEADERSHIP ROLES BELOW THIS BUT IT'S VERY ENCOURAGING TO SEE THIS AND THERE'S A LOT OF OTHER WORK WE'RE DOING INTERNALLY BUT I KNOW WHAT YOUR MOST INTERESTED IN IS WHAT IS GOING ON EX TERNALLY SO LET ME GIVE YOU HIGHLIGHTS THERE. >> TO OTHER INSTITUTES AND CENTERS HAVE JOINED IN THIS PROGRAM AND IT MAKES STEM OUTREACH TO K-12 I SHOULD SAY AND THERE ARE MORE INSTITUTES AND CENTERS SIGNING ON SO IF THAT IS SOMETHING OF INTEREST, TAKE A LOOK. WE'VE BEEN IMPRESSED BY SOMETHING STARTED BY THE NIH WIDE BRAIN INITIATIVE LAST MARCH AND MARCH OF '21 TO HAVE A PLAN TO ENHANCE DIVERSE PERSPECTIVES AS PART OF SCORING FOR GRANTS. THE BRAIN INITIATIVE LOOKED AROUND AND RECTIFIED THEY DIDN'T HAVE THE DIVERSITY OF PERSPECTIVES OF INVESTIGATORS THEY THOUGHT THEY NEEDED AND IT TRANSLATED INTO HAVING NOT DIVERSE POPULATIONS IN THEIR STUDIES SO THEY WORKED TO DEVELOP SOMETHING THAT COULD ALLOW FOR THAT. DIVERSE PERSPECTIVES IN THIS FAO ARE FUNDING OPPORTUNITY ANNOUNCEMENT ARE DIVERSITY OF DISCIPLINE, GEOGRAPHY OR KEEPING WITH NIH NOTICE OF INTEREST AND DIVERSITY SO NOW FOR THE FIRST TIME, WHEN REVIEWING ALL ASPECTS OF THE GRANT, THE DIVERSITY OF THAT TEAM IS A CONSIDERATION. AGAIN, YOU KNOW, THAT USUALLY WHEN THERE'S A REVIEW, YOU REVIEW THE APPLICATION AND YOU SCORE IT AND THERE IS AND THEY WANT FUNDING ANNOUNCEMENT AND I KNOW THE NATIONAL INSTITUTE IS BEING AGGRESSIVE AND SEVERAL OTHERS ARE. WE'RE ALSO EVALUATING IT BECAUSE AS THE DIRECTOR OF OUR CENTER FOR SCIENTIFIC REVIEW HAS POINTED OUT, THERE'S A QUESTION. IF A REVIEW PANEL HAS A NOBEL LAUREATE WHO DOES NOT WE WILL WITH A PEDP AND SOMEONE ELSE WHO IS NOT A NOBEL LAUREATE WHO DOES WELL WITH IT, WILL IT MAKE A DIFFERENCE IN SCORES? ONLY TIME WILL TELL. THIS IS SOMETHING ELSE WE'RE ADVOCATING FOR. AND I WOULD BE REMISED IF I DID NOT BRING TO YOUR ATTENTION SOMETHING THAT WAS JUST RELEASED THIS PAST FRIDAY. AND THAT IS AN RFI FOR A PRIZE COMPETITION FOR INSTITUTIONAL EXCELLENCE IN DEIA. WE'RE HOPING TO ACKNOWLEDGE TRANSFORMATIVE CULTURES, SYSTEMS AND PRODUCTS THAT DEVELOP THAT HAVE BEEN DEVELOPED TO ACHIEVE INCLUSIVE EXCELLENCE AND TO HIGHLIGHT PRACTICES THAT HAVE RESULTED IN MEASUREABLE CHANGE AND RECRATED AN INCLUSIVE ENVIRONMENT FOR STUDENTS AND FACULTY SO YOUR INPUT IS DEFINITELY NEEDED FOR THIS AND WHAT WE'RE LOOKING FOR ARE INPUT WITH REGARDS TO THE STRUCTURES OF THE PRIZE AND OUTREACH NEEDS TO BE DONE, WHAT THE JUDGING CRITERIA SHOULD BE, THE TIMING, WHAT WE SHOULD DO TO DISSEMINATE THE WINNING SUBMISSIONS AND POTENTIAL BARRIERS FOR APPLYING. MY OFFICE IS LEADING THIS ON BEHALF OF NIH UNITE. URGE YOU TO GOOGLE AND SEE MORE AND YES, TUNE IN AGAIN TO THE JUNE 10th ADVISORY COMMITTEE TO THE DIRECTOR MEETING WHERE WE WILL GIVE A COMPREHENSIVE UPDATE ON WHAT HAS BEEN DONE AND WHAT IS PROJECTED FOR THE NEXT SIX MONTHS. SO, I WILL CLOSE WITH OUR FAVORITE ADD AGE GREAT MINDS THINK DIFFERENTLY AND I WOULD BE HAPPY TO ANSWER ANY QUESTIONS THAT YOU MIGHT HAVE. >> THANK YOU FOR THAT OVERVIEW. THERE ARE A LOT OF GREAT INITIATIVES. DO WE HAVE ANY QUESTIONS? YES, CHERI. THANK YOU SO MUCH FOR THAT REALLY FANTASTIC OVERVIEW, JUST REALLY APPRECIATE IT AND IT'S EXCITING AND I'M SO APPRECIATIVE OF THE EFFORT UNDER YOUR LEADERSHIP OVER THE LAST SEVERAL YEARS. I WANTED TO ASK, YOU KNOW, FROM OUR LENS, IN THE NCMRR, OBVIOUSLY, YOU KNOW, WORKING TO DRIVE REHABILITATION RESEARCH AND WE'VE HAD A REALLY GREAT DISCUSSION ABOUT THINKING ABOUT RESEARCH THAT FOCUSES ON ABLEISM AND ONE THING THAT I THINK CAN SOMETIMES HAPPEN IS THAT WE CAN PUSH FORWARD GREAT INITIATIVES LIKE THIS YET WE DON'T SEE A LOT OF UPTICK IN TERMS OF DISABILITY BEING INCLUDED, MORE BREADLY IN STUDIES THAT ARE LOOKING AT HEALTH DISPARITIES THAT FOCUS ON OTHER ASPECTS LIKE RACE AND SOCIOECONOMIC STATUS AND SUCH. ARE YOU SEEING ANY CHANGES IN THAT REGARD BECAUSE I THINK WHEN WE THINK ABOUT HAVING A MOST IMPACT IN THE LONG-TERM, YOU KNOW, DRIVING DISABILITIES SPECIFIC WORK IS SO CRITICALLY IMPORTANT BUT I ALSO WOULD LOVE TO SEE MORE OF DISABILITY BEING INCLUDED AS A IMPORTANT DEVELOPMENT OF DIVERSITY WITHIN SOME OF THIS BROADER RESEARCH. SO HOPE YOU CAN IMPLEMENT ON THAT? >> YES, IT IS AN IMPORTANT ELEMENT AND I AGREE WITH YOU IT'S NOT FREQUENTLY AT A CONSCIOUS LEVEL MENTIONED ACKNOWLEDGED IN SPITE OF OUR NOTICE OF SPECIAL INTEREST IT CALLS OUT DISABILITIES. ONE OF THE THINGS -- I'M JUST EXCITED IN GENERAL TO BE IN THIS POSITION. THIS IS A GREAT TIME. THERE'S SO MUCH MOMENTUM. AND ONE OF THE OTHER THINGS THAT'S COMING DOWN THE LINE, IS A SET OF SUGGESTIONS, WHICH WILL BE RECOMMENDATIONS FROM THE ADVISORY COMMITTEE TO THE DIRECTOR, OF A DISABILITY SUBGROUP TO THE ADVISORY COMMITTEE AND IT'S A LOT OF WORDS. DISABILITY SUBGROUP TO THE ADD RISADVISORY COMMITTEE ON DIVERSITY SO RECOGNIZING THAT WE'RE NOT DOING WELL IN THIS SPACE. WE HAVE BROUGHT TOGETHER A GROUP OF EXPERTS TO REALLY THINK DEEPLY ABOUT WHAT WE AT NIH NEEDS TO BE DOING MORE OF AND BETTER. THEY'VE BEEN MEETING SINCE LAST SUMMER AND WE ANTICIPATE THAT THEY'RE SET, WE CAN'T CALL THEM RECOMMENDATIONS BECAUSE THEY ARE RECOMMENDATIONS UNTIL THEY'RE APPROVED BY THE ADD VOICE ROW COMMITTEE TO THE DISTRICTS OR BUT THEY'RE SUGGESTING THAT WE ANTICIPATE RECEIVING BY LATE SUMMER. AND THEN BRINGING IT PROBABLY TO THE DECEMBER ADD VOICE ADVISORY AND Dr. CRUZ ADVISES THE GROUP WHAT IS FEASIBLE AND WHAT'S NOT AND THE REALITIES AND I'M LOOKING FORWARD TO T I'VE GOTTEN A CHANCE TO LISTEN IN ON MOST OF THE DELIBERATIONS AND EVEN THOUGH MY OFFICE SUPPORTS AND WE'RE TRYING TO LET THE EXPERTS DO THEIR WORK AND IT'S BEEN REALLY INFORMATIVE AND THINKING ABOUT WHAT WE CAN CONTROL AND DO AND IT WILL BE REALLY HELPFUL WE HAVE A PLAN AND WE HAVE TO ACT ON IT WILL BE IMPACTFUL AS WELL AND IN THE STRUCTURE WE HAVE A STEERING COMMITTEE THAT IS INTERNAL AND COMMITS THAT REPORT THE STEERING COMMITTEE AND WE RECENTLY CHANGE WHAT WAS CALLED THE DIVERSITY WORKING GROUP TO THE DIVERSITY EQUITY INCLUSION AND ACCESSIBILITY WORKING GROUP AND SO THAT THERE WOULD BE A BODY THAT'S A LINE TO THE NIH DIRECTOR THAT WILL BE OVER SEEN THIS DEIA STRATEGIC PLAN AND DEVELOPMENT AND IMPLICATIONS SO I THINK THAT THOSE TWO THINGS, ONE INTERNALLI'. >> THANK YOU, IT'S VERY HELPFUL. >> IT'S SO GREAT TO SEE YOU. >> I'VE BEEN COMING IN WITHIN AND I'VE AGED WELL AND I YOU ARE ABLE TO COMMUNICATE AND THE IMPORTANT ISSUES THAT NEED TO BE ADDRESSED ESPECIALLY WITHIN NIH AND GROWING IT OUT. I HAVE A QUESTION RELATED TO THE ISSUE AND IT'S PROBABLY EMBEDDED IN SOME OF THE THINGS THAT YOU'VE MENTIONED BUT WHAT I LOOK AT IN THE EXTERNAL WEB FORCE PORTFOLIO, WHEN I LOOK AT IT, THE ISSUES THAT CLEARLY KIND OF BECOME BARRIERS FOR MINORITY STUDENTS TO TRANSITION INTO MY MINORITY OF RESEARCH HOUSE AND INTRODUCED IN TRANSITIONING INTO WELL MOSTLY DOCTORAL PROGRAMS AND THEN RESEARCHERS AND FUNDING BECOMES A BIG ISSUE AND IT'S ALMOST LIKE THAT'S WHY FROM UNDERGRADUATE AND I CAN GO TO GRADUATE SCHOOL BECAUSE WHY HAVE FUNDING AND THEN FROM CAN I DO A POSTDOC THAT IS NEEDED FOR THE MENTORSHIP PART TWO AND I CAN'T DO IT BECAUSE I DON'T HAVE FUNDING AND I CAN'T MOVE AND THEY'RE GETTING INTO THAT THIS SYSTEM OF FUNDING AND IS YOUR OFFICE THEN AND IS THIS DO YOU HAVE SUGGESTIONS OF WHAT IT IS THAT YOU THINK SHOULD BE HAPPENING AT THAT LEVEL TO MOVE IT THUMB BECAUSE IT'S REALLY LIKE A ROAD BLOCK. IN BECOMING A SUCH NIH INVESTIGATOR AND WE ARE LOOKING AT THE THING THAT I LOOV ABOUT BEING IN THIS POSITION IS WE HAVE A LEDGE POINT WORKING ACROSS NIH AND WITH ALL THE INSTITUTES AND CENTERS AND OFFICES AND AND BEYOND AND THEN ENCOURAGING SO I JUST CAME FROM A NATIONAL ACADEMY OF SCIENCE AND ENGINEERING AND MEDICINE MEETING TALKING ABOUT THE HIGH SCHOOL LEVEL AT THE JUNIOR COLLEGE LEVEL AND THE UNDER GREAT THAT CAN BE A REALLY BIG BARRIER FOR FOLKS. THE THINGS WE HAVE IN GREAT SUPPLY AT NIH, TEND TO START AT THIS POST GRADUATE LEVEL JUST BECAUSE OF OUR LEGISLATIVE MANDATE WE HAVE THE SCIENCE AND EDUCATION PIPPA WARD PROGRAM FOR K THROUGH 12 AND WE HAVE SOME THINGS THAT MAKE OUTREACH TO THE UNDERGRADUATE LEVELS LIKE THE DIVERSE THAT GOT THE DEVELOP IN THE SAME TIME THE CAUSE WOOD POSITION WAS DEVELOPED BUT OUR STRENGTH IS AT THAT GRADUATE LEVEL AND BEYOND. AND WE'RE LOOKING CAREFULLY ABOUT WHAT NEEDS TO BE DONE TO FURTHER ENHANCE THOSE PROGRAMS. ONE OF THE THINGS THAT I AM REALLY REALLY INTERESTED IN SEEING MORE OF IS DIVERSITY SUPPLEMENTS BECAUSE THE IT CAN ACTUALLY START AT A VERY EARLY CAREER STAGE AS WELL AND PARTICULARLY FOR GRADUATE STUDENTS AND BEYOND, THEY CAN BE A GREAT IN MY WE EVALUATED IMPACT OF OUR DIVERSITY AND AND WE SAW HAVING A SUPPLEMENT WAS ASSOCIATED WITH SUCCESSFUL SCIENCE CAREER AND YET KNOW THERE'S A MEDICINE ARTICLE FROM LAST NOVEMBER THAT LESS THAN AND IT MAY INFLUENCE THAT A BIT BECAUSE WE HAD A LOT THAT SAY I WANTED TO BE HE WILL AGE AND AND WE'RE THINKING ABOUT IT BROADLY AND I HAVE A LOT OF ALLIES AND WE HAVE 85 PLUS PEOPLE AND AND WE HAVE THE DATA AND THERE'S A LOT OF MOMENTUM. AND THANK YOU FOR THAT I JUST WANT TO POINT OUT SOMETHING THAT POSTDOCS WHICH WE ALL KNOW ARE ESSENTIAL TO SUCCESS IN ESTABLISHING A SCIENTIFIC CAREER AND IT IS SOMETHING THAT I BECAME AWARE OF RECENTLY IS FIRST OF ALL, THAT THE NSRA RECOMMENDED POSTDOC GALLERIES ARE EFFECTIVELY THE SALARIES USED BY INSTITUTIONS ACROSS THE, S. FOR POSTDOCS FUNDED BY ANY MECHANISM BY NIH FOR THE MOST PART, EVEN THOUGH IT'S NOT REQUIRED, IT SOMETIMES IS WITHIN AN INSTITUTION LIKE MINE. AND THOSE SALARIES DON'T VARY WITH COST OF LIVING. MOST OF THE TOP-RANKED UNIVERSITIES ARE IN HIGH-COST-OF-LIVING CITIES IN THE U.S. AND SO THOSE PEOPLE WHO DON'T HAVE FAMILY WEALTH, ARE REALLY EFFECTIVELY FILTERED FROM THAT MECHANISM AND I'M JUST WONDERING IF ANYWHERE AT NIH PEOPLE ARE THINKING OF THE COST OF LIVING RELATIVE TO THOSE SALARIES AND HOW TO SUPPLEMENT PEOPLE WHO HAVE COME FROM NON WEALTH FAMILIES WHO CAN'T HELP THEM AT THAT STAGE. WHICH IS A VERY EXPENSIVE STAGE BECAUSE MOST POSTDOCS ARE GETTING MARRIED AND STARTING A FAMILY. THANK YOU. >> VERY, VERY WELL TAKEN POINTS. IN A DISCUSSION JUST IN THE LAST COUPLE OF DAYS, Dr. MIKE LAWYER WHO RUNS THE OFFICE OF EXTRAMURAL RESEARCH, WAS ABLE TO DEMONSTRATE THAT WE'VE HAD INCREASE IN POSTDOC SALARIES, SIGNIFICANT INCREASES OF LATE IN FACT, TO AT LEAST HAVE US APPROXIMATE EIGHT WHAT THE NATIONAL FOUNDATION DOES AND INCREASE IN COS COST OF LIVING ALLOCATIONS BUT IT DOES NOT MATCH THE NEEDS OF PEOPLE IN HIGH-COST AREAS BUT IT'S TO SEE OUR DEGREES OF FLEXIBILITY ARE. SO IT'S A WEAKNESS. WE'RE DOING A LOT OF THINKING AND LOOKING AT IT. >> GREAT. DO WE HAVE ANY FINAL QUESTIONS? WITH THAT I'D LIKE TO THANK YOU AGAIN, THAT WAS REALLY A GREAT PRESENTATION AND VERY INSPIRING. WE LOOK FORWARD TO HEARING MORE. THIS IS TIME FOR OUR BREAK. SO I'D LIKE TO THANK YOU FOR ALL YOUR INPUT THIS MORNING AND WE'LL RETURN AT 1:00 >> I'D LIKE TO WELCOME EVERYBODY BACK FROM THEIR BREAK. THIS IS THE FINAL AFTERNOON OF THE ADVISORY BOARD MEETING. ONCE AGAIN, IF ANYBODY WANTS TO CATCH UP ON PREVIOUS PARTS OF THE MEETING IT WILL BE AVAILABLE ON THE NIH VIDEO CAST SITE AND IT SHOULD BE POSTED A WEEK OR SO AFTER THE MEETING OR CONTACT US DIRECTLY FOR FOR THE FOLLOW-UP INFORMATION. THE FIRST SESSION WE HAVE IS TALKING ABOUT THE IMPACT OF COVID ON PEOPLE WITH DISABILITIES AND WE TALKED ABOUT THIS AS THE PREVIOUS MEETING AND IT'S -- WE WANT TO TALK ABOUT IT BOTH, AT THE LEVEL OF HOW COVID IN PHYSIOLOGICAL ISSUES EFFECT PEOPLE WITH DISABILITIES BUT ALSO THE BROADER ISSUE ABOUT HOW ISSUES WITH COVID AND VACCINATIONS AND PROTECTIONS ARE L'ISLE-VERTE SOME OF THE BROADER ISSUES OF PEOPLE WITH DISABILITIES ON HEALTH DISPARITIES LEVEL AND IN ORDER TO SUM THIS UP WE CONTACTED LINDSEY WOOLISCROFT, AN UP-AND-COMING CLINICAL RESEARCH AND WITH LINDSEY'S BACKGROUND IN NEUROSCIENCE, SHE'S A ASSISTANT PROFESSOR OF NEUROLOGY IN THE SCHOOL OF MEDICINE IN OREGON HEALTH SCIENCES UNIVERSITY AND SHE WORKS WITH PEOPLE WITH MS SO SHE HAS SOME OF THE BACKGROUND IN TERMS OF UNDERSTANDING NEUROLOGICAL ISSUES AND SOME OF THE NEURO INFLAMMATORY ISSUES WITH COVID AND SHE HAS THE CLINICAL BACKGROUND TO UNDERSTAND SOME OF THE CONTEXTUAL ISSUES THAT WE'D LIKE TO RAISE AS WELL AND THE BROADER ISSUES OF HOW ACCESS FOR TREATMENTS AND SUPPORTS AND EFFECT PEOPLE'S WITH DISABILITIES. SO I VERY MUCH APPRECIATE LINDSEY TAKING TIME OUT INFORM PREPARE FOR THIS AND I TURNED IT OVER TO HER. THANK YOU, VERY MUCH. LINDSEY. >> THANK YOU. THANK YOU SO MUCH FOR HAVING ME. LET ME SHARE MY SCREEN. ALL RIGHT. IS THAT SHOWING UP OK. >> YES. TODAY WE'LL UNDERSTAND THE WAYS THAT COVID-19 AND THE GOVERNMENTAL RESPONSE TO AND THIS USES SELF-DESCRIBED DISABILITIES WHICH HAS ITS STRENGTHS AND DRAWBACKS AND LUMPS TOGETHER THOSE WITH CHRONIC DISEASE AND A LOT OF THE DATA IS FROM THE U.K. WHICH HAS DIFFERENT DEMOGRAPHICS AND GOVERNMENTAL FRAMEWORKS AND SO THERE COULD BE SOME LIMITATIONS IN THE GENERALIZABILITY. AND YOU KNOW, IN PREPARING THIS PRESENTATION, I WAS REALLY MOVED BY A LOT OF THE QUALITATIVE RESEARCH ABOUT THE LIVED EXPERIENCE OF THOSE WITH DISABILITIES DURING THE PANDEMIC AND SO I HAVE THE QUOTATIONS HERE SO IF THE GAP EXISTS BEFORE A MAJOR HEALTH CRISIS, YOU BETTER BELIEVE IT WILL BE THE GRAND CANYON WHEN COMING LIKE THIS HAPPENS TO US AND THAT WILL BE A THEME IN TODAY'S PRESENTATION BECAUSE WHILE COVID-19 HAS EFFECTED HOW WE ALL LIVE AND WORK, YOU WILL SEE IN THIS PRESENTATION THAT THE EFFECTIVE OF COVID-19 WAS ESPECIALLY DISRUPTIVE AND HARM 68 FOR THOSE WITH DISABILITIES AND MAG MANY AND ON DISABILITY TODAY, WE'LL USE THIS WHO DISABILITY MODEL FRAMEWORK WHICH MAY BE FAMILIAR FROM THE DISCUSSION DURING THE MINI SYMPOSIUM WE HAD AND THIS IS A PERSON'S LEVEL OF FUNCTIONING AS AN INTER PLAY BETWEEN THEIR HEALTH CONDITION, ENVIRONMENT AND PERSONAL FACTORS. BECAUSE AS YOU CAN SEE, WHEN COVID-19 EMERGED, IT IMPACTED ALL COMPONENTS OF DISABILITIES. BUT TO BEGIN, WE'LL TALK ABOUT THE IMPACT OF THE SARS-CoV-2 VIRUS DIRECTLY ON THE BODY STRUCTURE AND FUNCTION. WHILE WE'RE ALL FAMILIAR WITH THE PULL MINUTE TARRY SYMPTOMS OF ACUTE COVID-19, IT MAY NOT COME AS A SHOCK IT CAN EFFECT OTHER ORGAN SYSTEMS AND IT CAN IMPACT THE SYDNEY, THE LIVER LIVER, THE SKIN AND CAUSE SYMPTOMS LIKE DIARREAH, NAUSEA, VOMITING, ABDOMINAL PAIN AND ANOREXIA AND HAVE CARDIO AGAIN I CAN SHOCK AND MIs, AND THEN MYOCARDITIS IS AND IT CAN ALSO THREAD TO LUNGS AND LIMBS AND NEWER LOGIC COMPLICATIONS INCLUDING DIZZINESS, AND THEY ARE MULTI-FACTORIAL. THE SARS-CoV-2 AND THE SLIGHT PROTEINS ON IT CAN INTERACT WITH THE ACE 2 RECEPTORS IN ORDER TO BE INTERNALIZED INTO THE HOST CELLS. YOU CAN ALSO GET DIRECT CYTO TOXIC EFFECTS FROM THIS INTERACTION AND YOU CAN GET DISREGULATION OF THE ANGIO TENSION PATHWAY AND AS ACE 2 WHICH WE KNOW IS USED FOR THE INTERNALIZATION. -- YOU CAN ALSO GET CELL DAMAGE WHICH LEADS TO A CYCLE OF INFLAMMATION AND THROMBOSIS WITHIN THE ARTERIES AND VEINS AND ALSO GET A DIS-REGULATED IMMUNE RESPONSE AND A HYPER ACTIVE INNATE IMMUNITY AND RESULT NORTH A RELEASE SYNDROME FOR ISL6 AND ALPHA AND THOSE ACUTE SYSTEMS CAN EXTEND ON FROM THE BEGINNING OF THE INFECTION OF THE SYMPTOMATIC INFECTION TO ABOUT WEEK FOUR. AND HOWEVER, EVEN AFTER THOSE FOUR-WEEK PERIOD, YOU CAN ENTER INTO A POST ACUTE COVID-1 COVID-19 KNOWN AS LONG COVID. ABOUT 22% OF FOLKS WILL HAVE SYMPTOMS BEYOND FIVE WEEKS AND ABOUT 10% OF FOLKS WILL HAVE SYMPTOMS BEYOND 12 WEEKS AND THESE SYMPTOMS CAN CERTAINLY CONTRIBUTE A LOT TO OVER ALL DISABILITY LEVELS. THEY CAN INCLUDE MUSCULAR WEAKNESS, JOINT PAIN, FATIGUE, PULMONARY SYMPTOMS LIKE COUGH AND SLEEP DISTURBANCE AND KIDNEY DISEASE. SO TO SUMMARIZE ACUTE COVID-19 CAN CAUSE INJURY TO NEWER LOGIC, CARDIAC, OTHER ORGAN SYSTEMS THROUGH DIFFERENT MECHANISMS INCLUDING DIRECT CYTO TOXIC EFFECT, DISREGULATION OF THE IMMUNE RESPONSE AND RAS PATHWAY AND POST ACUTE COVID-19 CAN EXTEND EVEN BEYOND THE FOUR WEEKS OF INFECTION AND ABOUT 22% OF PEOPLE, WITH LONGER TERM EFFECTS ON FUNCTIONING. THERE'S A BY DIRECTIONAL RELATIONSHIP BETWEEN COVID-19 AND AN INDIVIDUAL'S HEALTH CONSIDER WHERE THEIR PRIOR DISABILITY LEVEL AND HEALTH CONDITIONS CAN IMPACT INFECTION RISK AND MORTALITY AND COVID-19 CAN IMPACT THEIR UNDERLYING HEALTH CONDITIONS. SO TO BEGIN, LET'S TALK ABOUT THE IMPACT OF DIS DISABILITY LEVELS ON COVID-19 AND INFECTION AND ASSOCIATED MORTALITY. SO TO START, WE'LL DISCUSS THIS PAPER WHICH LOOKED AT 65 MILLION PEOPLE IN THE U.S. AND A CROSS SECTIONAL STUDY FROM JANUARY 2019 TO 2020 USING THE CLINICAL DATABASE RESOURCE MANAGER AND WHAT THEY DID WAS THEY LOOKED AT THE RISK OF COVID-19 DIAGNOSIS, AMONG THE ESTABLISHED PATIENTS SO DIFFERENT DEMOGRAPHICS AND AGE YOU CAN SEE HERE AND DIFFERENT RESPECTERS THAT WE KNOW MAY PLAY A PART IN RISK OF COVID-19. LIKE HYPERTENSION, KIDNEY AND LIVER DISEASE, ET CETERA. AND THEN THEY PLOTTED THE ODD RATIO OF THOSE RISK FACTORS COMPARED TO PATIENTS WITHOUT THE RISK FACTORS. WHAT WE FOUND WAS THAT THE NUMBER ONE RISK FACTORS WITH A RISK OF COVID-19 AND DISABILITY WITH THOSE WITH DISABILITIES HAVING AN 160% INCREASE IN THE ODDS OF BEING DIAGNOSED WITH COVID-19. RELEVANT TO OUR POPULATION, WE ALSO SAY A 96 PERCENT INCREASE IN DIAGNOSIS WITH COVID-19 AND AND AND COMPARED WITH THOSE PHYSICAL DISABILITIES AND AND COVERING THE PASS OR COMMUNICATION AND HEALTH STATUS CHANGES BUT THERE'S SOME RELEVANT SIMILARITIES INCLUDING NEED FOR HOME CARE, PUBLIC TRANCE AND PHYSICAL DISABILITY AND THIS WAS NATIONAL STATISTICS HEALTHY AND QUESTIONNAIRE AND WHAT THEY DID WAS THEY LOOKED AT DESKS AND FOR MALES AND AT THE BOTTOM FEMALES AND THEY LOOKED AT THE RISKS OF DISABILITY AND IT HAS A RATIO OF THOSE PEOPLE AND NON DISABLED PEOPLE FOR THOSE WHO WERE LIMITED A LITTLE AND THOSE WHO WERE LIMITED A LOT. WHAT THEY FOUND WAS THAT THE RISK OF DEATH INVOLVING COVID-19 FOR PEOPLE WHO ARE LIMITED A LITTLE, WAS TWICE AS LIKELY TO INVOLVE WITH A DEATH IN COVID-19 COMPARED TO NON DISABILITY RESPONDENTS AND THE RISK OF DEATH INVOLVING COVID-19 FOR THOSE AND THREE TIMES AND AND IS AND GRAPHIC FACTORS AND HEALTH STATUS AND THE DATA IMPLIES RELATIONSHIP BETWEEN DISABILITY AND RISK OF MORTALITY WE MUST BE CAREFUL ABOUT WHAT WE DO WITH THIS INFORMATION AND IT SHOULDN'T BE USED TO FURTHER MEDICAL ABLEISM AND MEDICAL RATIONING ON THE BASIS OF DISABILITY. AND I THINK THAT ALICE WONG, REALLY PUT THIS WELL. SHE'S A DISABLED ACTIVIST, WRITER, FOUNDER AN FOUND OR AND DIRECTOR O F THE DISABILITY PROJECT FEATURED HERE. SHE SAD TO CONTRACT CORONAVIRUS Dr. MAY READ MY CHART, LOOK AT ME AND THINK I'M A WASTE OF THEIR EFFORTS AND PRECIOUS RESOURCES THAT NEVER SHOULD HAVE BEEN IN SHORTAGE AND TAKE MY VENTILATOR FOR OTHER PATIENTS WHO HAD A BETTER SHOT AT SURVIVAL THAN ME. ALL OF THESE HORDE CHOICES DOCTOR HURT THOSE HARDEST. NOT THOSE WHO PRESENT AS WORTHY INVESTMENTS OF SCARE RESOURCES AND OVER ALL, THERE'S LIMITED INFORMATION ABOUT THAT AND WE KNOW THAT THEY'RE COMMON AND EXACERBATION AND AND ANOTHER INFECTION CAN TRIGGER MUSS YOU LAR ILLNESS AND THERE IS SOME INTEREST TO SEE IF THE RISK OF STROKE AND ACUTE LIMIT CAN GO AFTER AND SO FAR THE INSTANCE IS STROKE WITH COVID-19 IS VERY AND AND THERE'S A SMALL COHORTS LOOKING AT THE RISK OF OVER ALL LIMIT AND LEADING TO LET AND SO FAR NO ASSOCIATION BETWEEN MS RELAPSE HAS BEEN FOUND TO DATE AND IT'S SPECULATED TO POSSIBLY BECAUSE OF HIGH AMOUNT OF EFFICACY THERAPY IS IN USE COMPARED TO PRIOR COHORTS. HOWEVER, ONE POTENTIAL INTERESTING WAY THAT COVID-19 INFECTION CAN INDIRECTLY IMPACT A DISEASE IS THROUGH THE COHORT OF PARKINSON'S PATIENTS AND THIS VERY SMALL COHORT, ABOUT 50% OF COVID POSITIVE PARKINSON'S PATIENTS EXPERIENCED DIARREAH ALTER THE ABSORPTION OF THIS MEDICATIONS AND THEN INCREASED THEIR MOTOR WORSENING AND DAILY OFF TIME LEADING TO MEDICATION ADJUSTMENTS. WHICH HAS BEEN SEEN IN SOME OTHER SERIES. REALLY HIGHLIGHTING HOW THESE MEASURE ADD OF DIFFERENT EXTRA PULMONARY SYMPTOMS CAN PLAY A PART AND WORSEN POTENTIAL UNDERLYING DISABILITIES CONDITIONS. SO TO SUMMARIZE IT'S ONE OF THE TOP RISK FACTORS FOR COVID-19 INFECTION AND PHYSICALLY DISABLED PEOPLE ARE TWO TO THREE TIMES MORE LIKELY TO DIE WITH COVID-19 INFECTION COMPARED TO NON DISABLED PEOPLE. COVID-19 INFECTION COULD CONTRIBUTE TO DIRECTLY TO DISABLING DISEASE AND CONTRIBUTING TO THE RISK OR CAUSE NEURO MUSCULAR DISEASE, STROKE, OR ACUTE SCHEMEIC LIMB INJURY LEADING TO LIMB LOSS AND COVID-19 INFECTION CAN INDIRECTLY CAUSE AN INCREASE IN SYMPTOMS OR EFFECT TREATMENT OF DISABLING CONDITIONS LIKE THE DRUG ABSORBION EXAMPLE IN PARKINSON'S DISEASE. FOR COVID-19, MAY ALSO DIRECTLY IMPACT ACTIVITIES AND PARTICIPATION FOR THOSE WITH DISABILITIES. AND TO REALLY ILLUSTRATE THIS WE'LL BE USING THE ACTIVE LIFE LIVE SURVEY, A NATIONAL SURVEY IN ENGLAND FOR THOSE OVER AGE 16 WHICH IS RUNNING SINCE 2015 AND USED TO INFORM GOVERNMENTAL AGENCIES PROJECTS AND POLICIES. AND THIS PART OF THE SURVEY WAS LOOKING A LOT THE PERCENTAGE OF ACTIVE ADULTS MEANING THOSE WHO WERE ENGAGING IN 150 OR MORE MINUTES PER WEEK OF MODERATE INTENSITY ACTIVITY AND THEY LOOKED AT THE RATES OF THESE PEOPLE CONSIDERED ACTIVE AND THOSE WHO WERE DISABLED HERE IN THE DARK GROWN OR NOT DISABLED HERE IN THE LIGHT GREEN. AND THEY TRACKED THOSE FROM ABOUT 2016, 2017, 2018, 2019, AND THEN WITH THE ONSET OF THE PANDEMIC HERE, AT THE LAST DATA POINT. AS YOU CAN SEE FOR THOSE WHO ARE NOT DISABLED, ABOUT 67% OF THOSE FOLKS ARE CONSIDERED ACTIVE UNTIL THE ONSET OF THE PANDEMIC WHERE THOSE RATES DECREASE BY 1.5% AND IN THE DISABLED COHORT, YOU CAN SEE IT MAYBE IS A SLOW INCREASE IN THE PERCENTAGE OF ACTIVE ADULTS UNTIL THE PANDEMIC HIT WHERE YOU SEE A LARGER DROP OFF BETWEEN THE TWO GROUPS AT 2.1% COMPARED TO 1.5%. AND PARTICIPATION WAS NOT EQUAL. THE MORE I AM PARLIAMENTS THAT FOLKS RECORDED, THE LOWER CHANCE AND THE LOWER ACTIVITY RATES WE'RE SEEING IN EACH OF THOSE GROUPS. AND TO THIS DATA A LITTLE BIT DEEPER, THE GROUP LOOKED AT THE TYPES OF ACTIVITIES THAT FOLKS ARE PARTICIPATING IN THEY TRACKED WITH THOSE NOT DISABLED AND HAD A LIMITING DISABILITY FOR YEARS. IN 2016, AND THEN THE DROP OFF BETWEEN 2019 AND APRIL AND MAY AFTER THE COVID LOCKDOWN HIT. YOU CAN SEE DIFFERENT ACTIVITY CATEGORIES HERE COLOR CODED AND WHAT WE SEE OVER ALL IS THE SAME THING THAT WAS ILLUSTRATED IN THE LAST FIGURE THAT THOSE WITH THE LIMITING DISABILITY AND ARE ENGAGING IN FAR FEWER MINUTES PER WEEK OF ACTIVITY THAN THOSE WHO WERE NON DISABILITY AND THAT THERE WAS A DECREASE IN ALL ACTIVITIES EXCEPT FOR GARDENING AND FOR THOSE THAT ARE NOT DISABLED THOSE WHO ARE WORKING FOR LEASE YOUR AND IT'S IMPORTANT TO NOTE THAT THE LARGEST DECLINES WERE REALLY SEEN IN NON WHITE ETH NICE TEASE AND YOUNGEST AND COLDEST AGE GROUPS AND THE UNEMPLOYED WHICH WEREN'T REALLY CAPTURED HERE. IT'S THE COMFORT LEVEL OF THE PEOPLE WITH DISABILITIES EXPERIENCE WHEN LEAVING THEIR HOME AS IT RELATES TO THE COVID-19 PANDEMIC AND HERE THEY LOOKED AT THIS OPINIONS AND LIFESTYLES SURVEY AGAIN, PERFORMED IN GREAT BRITAIN AND AS FOLKS WHO WERE DISABLED AND NON DISABLED IF THEY WERE UNCOMFORTABLE OR VERY UNCOM ABLE LEAVING THEIR HOME AND IF THEY'RE HAT HIGH-RISK WITH COVID-19 AND AS YOU CAN SEE, THE PEOPLE WITH DISABILITIES WERE TWICE AS LIKELY TO REPORT THAT THEY WERE UNCOMFORTABLE OR VERY UNCOM ABLE LEAVING THEIR HOME OR PERCEIVED THEMSELVES AS HIGH-RISK OR VERY HIGH-RISK IF INFECTED WITH COVID-19. AND THE TYPES OF COMPONENTS OF LIFE EFFECTED WERE ALSO VERY DIFFERENT IN THESE GROUPS AND TO SAY THAT PEOPLE WERE ALMOST TWICE AS LIKELY TO REPORT IMPACTS ON THEIR ACCESS TO HEALTHCARE AND WE'RE MONTH LIKELY TO REPORT THAT THEIR WELL-BEING IN EFFECTED AND HE WAS STUCK AND THEY WANT ME TO LIVE DOWN STAIRS. I'VE STAYED IN ANY BATHROOM, MY SIDE AND MY BEDROOM AFTER 14 WEEKS. TO SUMMARIZE ACTIVITY LEVELS WITH PEOPLE WITH DISABILITIED WERE LOW BEFORE 2020 AND DECREASED FURTHER AFTER THE PANDEMIC. AND DISABLED PEOPLE ARE MORE LIKELY TO REPORT FEAR OF LEAVING THEIR HOMES, DIFFICULTY ACCESSING HEALTHCARE AND DECREASE QUALITY OF LIFE AS COMPARED TO NON DISABLED PEOPLE. AND SO LET'S EXPLORE A LITTLE BIT MORE ABOUT HOW COVID-19 HAS IMPACTED THE PERSONAL AND ENVIRONMENTAL FACTORS AND THIS IS TO BE LOOKED AT THE ACCESS TO FOOD AND CARE FOR PEOPLE WITH COVID-19 FROM THIS PERIOD OF IN APRIL OF 2021 AND OVER ALL THEY'RE ABOUT 50,000 RESPONDENTS INCLUDING 12,000 WITH A MOBILITY DISABILITY AND THEN WHAT THEY FOUND, WAS THAT PEOPLE, COMPARED INFORM NON DISABLED PEOPLE, THEY WERE 1.89 TIMES MORE LIKELY TO REPORT A FOOD INSUFFICIENT SEE IN THE PAST WEEK AND 1.73 TIMES MORE LIKELY TO REPORT DELAYING CARE IN THE LAST MONTH AND WERE TWO TIMES MORE LIKELY TO REPORT NOT GETTING NEEDED CARE IN THE PAST MONTH. WHILE INTERNET ACCESS AND PARTICIPATION IS NOT THE WHOLE PICTURE, WE KNOW THAT THIS IS BECOME INCREASINGLY NEEDS' IN OUR MORE HYBRID OR DIGITAL WORLD AND INTERNET ACCESS IS NECESSARY FOR ACCESS TO TELEHEALTH RESOURCES OR ACCURATE HEALTH INFORMATION, APPLYING FOR BENEFITS OR SEARCHING FOR JOBS, EDUCATION, PAINTING FOOD AND MORE IMPORTANTLY AS SOCIALIZATION AND SUPPORT GROUPS. BUT THERE ARE A LOT OF DIFFERENT LEVELS OF DIGITAL INEQUALITIED INCONCLUDESSING ACCESS TO A RELIABLE BROADBAND INTERNET, DIGITAL LIT ARE SEE AN LITERACY AND A QUAR TER OF AMERICANS HAVE NO INTERNET ACCESS. THIS IS WORSE FOR THOSE WHO HAVE A HIGH SCHOOL DEGREE OR LESS AND MAKE A LESS THAN $30,000 AND THOSE IN RURAL POPULATIONS WHO ARGUABLY MAY BENEFIT FROM THESE SERVICES MORE AND WE KNOW THAT THE CHANCE OF HAVING INTERNET ACCESS AT HOME IS 62% LER FOR PEOPLE WHO REPORT AN ACTIVITY IN LIMITATION AND EVEN IF THEY HAVE ACCESS, PEOPLE WITH DISABILITIES HAVE LOWER IMMUNE SCORES AND DIGITAL SKILLS AND MOTIVATIONS FOR INTERNET USE. BUT EVEN IF EVERYTHING GOES WELL, AND THEY HAVE NO ISSUES WITH ACCESS, SKILLS AND MOTIVATION, THERE CAN BE OTHER UNFORESEEN CONSEQUENCES UNTIL WE SHIRTED OUR WORLD TO A SPACE ILLUSTRATED BY ASHLEY. WE DON'T WANT THAT AFTER THE CRISIS IS OVER FOR PEOPLE TO SAY, OH, WELL, ACTUALLY WE DON'T NEED TO MAKE THAT MEETING ACCESSIBLE BECAUSE DISABLED, PEOPLE, YOU CAN ZOOM IT OR WEBEX IT OR TEAMS IT. IT WORRIES ME THIS WHOLE ON-LINE CONNECTIVITY WILL LEAD TO MORE ISOLATE. NOT LESS. IT'S WONDERFUL FOR SOME PEOPLE AND BUT WHY WANT IT TO BE THE ONLY THING. IT BRINGS UP A PERSONAL FACTOR INVOLVING LONELINESS AND QUALITY OF LIFE FOR DISABLED PEOPLE. HERE IN THIS OPINIONS LIFESTYLES SURVEY, THEY ALSO LOOKED AT LEVELS OF LIFE SATISFACTION AND THE PERCENTAGE OF PEOPLE REPORTED FEELING LONELY OFTEN, ALWAYS OR SOME OF THE TIME AND SO I'LL DIRECTLY YOU FIRST TO THE LIVE SATISFACTION GRAPH. YOU CAN SEE PLOTTED SCORES OUT OF 10 WITH HIGHER SCORES BEING MORE LIFE SATISFACTION CHARTED FROM A PERIOD OF APRIL 2020 TO OCTOBER OF 2021 AND NON DISABLED PEOPLE HERE IN GROW GREEN AND DISABLED PEOPLE HERE IN BLUE. AFTER GETTING AN INITIAL BUMP IN LIFE SATISFACTION AT THE FIRST PERIOD OF LOCKDOWN SEEN HERE IN BLUE, YOU CAN SEE THAT THAT WAS NON DISABLED AND DISABLED WHICH IS PERSISTED ACROSS MULTIPLE EPOCHS OF THE COVID-19 PANDEMIC. AND, SINCE THE START THEY HAVE BEEN TWICE AS LIKELY TO REPORT LOAN LOWNESS AND SIMILAR TO THESE GRAPHS, WE SEE THAT DISABLED PEOPLE ARE MORE LIKELY TO REPORT FEELING THAT LIFE IS LESS WORTH WHILE AND DECREASE HAPPINESS AND INCREASE ANXIETY AND TO ROUND THIS OUT WITH A MORE PERSONAL STORY, I WANTED TO INCLUDE THIS QUOTE BY MEGAN WHO SAID, THERE'S NOTHING I CAN DO TO MICK MY DAY SHORTER. AT THE MOMENT, I'M TRYING TO SLEEP TO GET RID OF SOME OF THE DAY. SO, TO SUMMARIZE DISABLED PEOPLE ARE TWICE AS LIKELY TO REPORT FOOD INSECURITY, DELAYS IN CARRYING NOT RECEIVING IS NEEDED CARE, AND THE INTERNET IS INCREASINGLY NECESSARY TO ACCESS THIS CARE BUT PEOPLE WITH DISABILITIES ARE LESS LIKELY TO HAVE BROADBAND AK AND HE IS HAVE LOWER DIGITAL SKILLS ON AVERAGE. DISABLED PEOPLE ARE ALSO MORE LIKELY TO REPORT LONELINESS AND REDUCED QUALITY OF LIFE. AS YOU CAN SEE, IT HAS IMPACTED ALL OF THESE COMB PHONE ANTS WHICH LEAVES US WITH WHAT WE SHOULD DO TO ADDRESS THESE INEQUALITIES SO, NOW WE'LL REVIEW SOME POTENTIAL AND CURRENT ACTION TO ADDRESS THE NEEDS OF PEOPLE WITH DISABILITIES DURING THE COVID-19 PANDEMIC. WHICH I THOUGHT WAS REALLY WELL SUMMARIZE INSIDE THIS ARTICLE AND FIRST WE NEED TO IMPROVE ACCESS TO RESOURCES AS WE TALKED ABOUT WITH THE HIGH LEVELS OF FOOD AND SUFFICIENCY AND WE NEED TIME PROVE ACCESS TO TRANSPORTATION, FOOT, INTERNET, AND WE NEED TO PROVIDE ACCESSIBLE COVID INFORMATION AND WE NEED TO WORK ON COVID PREVENTION STRATEGIES INCLUDING PROVIDING MASKS AND ABILITY FOR PEOPLE TO W DISABILITIES TO APPROPRIATELY SOCIALLY DISTANCE AND WE NEED ACCESSIBLE COVID TESTING INCLUDING EXPANDED COVE TESTING THAT CAN PERFORMED IN THE HOME FOR PEOPLE WITH MOW BILL ISSUES AND WE NEED TO IMPROVE ACCESS TO SOCIAL CARE SERVICES AND INCLUDING CAREGIVING AND WE NEED TO PROVIDE IMPROVED HEALTH SERVICES INCLUDING HEALY HEALTH AND COMMUNITY BASED NETWORK AS WE DISCUSSED AT THE BEGINNINGS WITH ALICE WONG'S QUOTE WE NEED TO AS THIS CAN BE A VULNERABLE POPULATION AND WE ALREADY KNOW THAT A LOT OF PEOPLE WHO ARE DISABLED ARE REPORTING FEELINGS OF ISOLATION AND WE NEED TO PROTECT THEM FROM AND RESPOND TO VIOLENCE AND WE NEED 'EM EMPLOYMENT AND INCLUDE THE VOICES OF PEOPLE WITH DISABILITIES AND THE RECOVERY PHASE. MASKS AND EDUCATION SO FOR TESTING, AND COMPLIMENT SERVICES AND INCREASE DISABILITY INFORMATION AND SELF-TEST AND THERE ARE EFFORTS MODIFY AND PACKAGING FOR YOUR VEHICLE AND DEVISING MANUFACTURE AND HIGH-QUALITY MASTER COMMUNITY BASED ORGANIZATIONS AND SERVING INDIVIDUALS WITH DISABILITY AND GUIDANCE AND STUDENTS SAFE AND LEARNING IN-PERSON. I WOULD LIKE TO THANK THE AND I WOULD BE ABLE FOR ANY QUESTIONS AND A COFFEE OF MY BIBLIOGRAPHY AND YOU COULD USE THE KEY BAR CODE HERE. >> THANK YOU FOR THAT VERY NICE REVIEW AND DO WE HAVE ANY QUESTIONS? >> I WAS STRUCK BY SOME OF THE DATA THAT YOU REPORTED PARTICULARLY THE NUMBER OF PEOPLE WHO HAVE LONG COVID. DO YOU KNOW IF THOSE WITH DISABILITIES OF LONG COVID SYMPTOMS ARE? >> I THINK IT'S SUCH A RECENTLY DESCRIBED PHENOMENON AND I COULDN'T FIND A LOT OF INFORMATION SPECIFICALLY ON THOSE PHYSICAL DISABILITIES. I DID SEE SOME STUDIES THAT HINTED THAT THOSE WITH NEURO LOGIC DIAGNOSIS PRIOR TO COVID MAY HAVE A SLIGHTLY HIGHER FREQUENCY OF LONG COVID BUT THEY'RE SMALL COHORTS AND IT'S AN INTERESTING QUESTION. >> WE HEARD ABOUT THE HOME TEST KITS BEING MODIFIED. DO YOU KNOW ANYTHING ABOUT MAKING HOME TEST KITS MORE ACCESSIBLE TO PEOPLE WITH DISABILITIES, ESPECIALLY PEOPLE WITH MOTORIC ISSUES? >> I THINK A LOT OF THINGS I READ WERE REALLY -- THE THINGS THAT HAD ALREADY BEEN ROLLED OUT WERE MORE IN LINE WITH TRYING TO MAKE THE INSTRUCTIONS TO PERFORM THE HOME TEST KITS AND ACCESSIBLE FOR PEOPLE WITH INTELLECTUAL DISABILITIES AND I THINK THAT THE WHITE HOUSE INITIATIVE THAT I MENTIONED, WAS MORE LOOKING TOWARDS THE FUTURE OF INVOLVING PEOPLE WITH DISABILITIES AND TRYING TO MAKE THE PACKAGING AND EVERYTHING MORE ACCESSIBLE BUT I DON'T THINK THERE'S BEEN CONCRETE MOVES THAT ARE AVAILABLE FOR CONSUMERS RIGHT NOW. >> THANK YOU, LEND SEE. THAT WALINDSEY.THAT WAS REALLY INFORMATIVE . YOU PRESENTED NICE DATA FROM THE U.K. AND I ASSUME IT WASN'T AS GOOD A A PICTURE FROM THE US AND YOU KNOW IF THERE'S ANY WORK IN THE PIPELINES TO TRU TROY TO GET THAT INFORMATION COMPARED TO GET IN A NICE WAY THE WAY THE BRITS DID? >> THERE WAS SOME DATASETS LIKE LOOKING AGAIN AT KIND OF THAT BUSY DATABASE THAT WAS HELPFUL TO LOOK AT CROSS SECTIONAL ASSOCIATIONS WITH DIAGNOSIS AND MORTALITY RATES. I THINK ONE OF THE BENEFITS OF -- I KNOW AS AN MS DOCTOR, I THINK I'VE REALLY SEEN THE BENEFITS OF MODELS LIKE SWEDEN OR PLACES WITH OTHER INDUSTRIAL ISIZED HEALTHCARE SYSTEMS WHERE THEY CAPTURE A LOT OF INFORMATION ABOUT THEIR PATIENTS AND RISK FACTORS AND MEDICATION PATTERNS AND LOOK AT THE RISK OF COVID-19 OR SEVERE COVID-19 AMONG PATIENTS AND I JUST WASN'T ABLE TO FIND A LOT OF THAT EQUIVALENT INFORMATION AND U.S. MODELS BUT I THINK THAT THERE'S BEEN A LOT OF -- I THINK GRASSROOTS MOVEMENTS AND A LOT OF DIFFERENT SPECIALITIES I KNOW AT LEAST WITH MS AND THERE'S BEEN A BIG PUSH WITH THE NATIONAL MS SOCIETY TO CREATE A DATABASE THAT INDIVIDUAL PROVIDERS CAN CONTRIBUTE TO ABOUT COVID-19 CASES AND AMONGST MS PATIENTS AND I THINK IT'S BEEN ABLE TO IDENTIFY THAT MS WAS NOT A RISK FACTORS FOR COVID OR SEVERE COVID-19 BUT CERTAIN HIGH EFFICACY THERAPIES DIDN'T VIEW A HIGH-RISK OF SEVERE INFECTION AS WELL AS STEROIDS OR MORE DISABLED FOLKS LIKE WHEELCHAIR USERS. SO, I THINK WHEN YOU LOOK AT MORE DISEASE-SPECIFIC MODELS I THINK THAT YOU CAN GET A LITTLE BIT MORE GRANULAR ABOUT WHAT THOSE PATTERNS ARE IN THE UNITED STATES. >> RALPH -- >> I ALSO WANTED IN YOUR OWN PRACTICE, YOU HAVE MS PATIENTS, WHAT ARE YOU ACTUAL LOW HEARING FROM THEM IN TERMS OF THEIR REACTION TO IT WHETHE AND GENERAL ANXIETY WITH COVID AND THEIR CONDITION? WHAT ARE YOU ACTUAL LOW HEARING FROACTUALLY HEARINGFROM YOUR PATIENTS? >> IT'S HARD TO UNDERSTAND THE KIND OF BUBBLE THAT YOU ARE LIVING IN IN THESE TIMES. BEING IN PACIFIC NORTHWEST WE HAVE CERTAIN PATTERNS OF POLITICAL AND SOCIAL NORMS THAT HAVE BEEN ESTABLISHED HERE THAT MAY BE DIFFERENT THAN OTHER AREAS ACROSS THE COUNTRY AND I WOULD SAY THAT OUR GOVERNMENTAL RESPONSE HERE EXTENDED MASK WEARING AND THOSE THINGS ALONG LONGER THAN OTHER PARTS OF THE COUNTS TREE SO I WAS NOT SURPRISED BY THE DATA THAT SUPPORTED THAT YOU KNOW, PATIENTS WHO WITH DISABILITIES WERE TWICE AS FEARFUL TO LEAVE THEIR HOMES AND INTERPRETED THEIR RISK AS TWICE AS HIGH IF THEY WERE TO GET A COVID-19 INFECTION AND I SEE A LOT OF ANXIETY AMONGST MY PATIENTS ABOUT THAT. I THINK THAT IT'S A REALLY INTERESTING. WHAT ABOUT THE ENVIRONMENT STUFF AND THE RESPIRATORY CONDITION. DOES IT MAKE IT WORSE? >> ABSOLUTELY. I THINK THAT IT WAS ALSO, AS PEOPLE EVACUATED THEIR HOMES, I THINK I MADE IT VERY HARD TO DISTANCE AND IT POSED ANOTHER RISK OF LEAVING YOUR HOME. BEING IN THIS HIGH-CONTACT HOUSING FOR MY PATIENTS WHO WERE WHEELCHAIR USERS CONSIDERING HOW THEY WERE GOING TO NAVIGATE THE SPACES THAT WERE SET UP FOR A DISASTER AND NOT A COMMENT DATING PEOPLE WITH DISABILITY LEVELS AND IT'S A VERY COMPLICATED IN OUR WARMING WORLD. >> WHAT WAS THE APPROPRIATE PRACTICE? IF SOMEONE WITH DISABILITIES, ONE OF YOUR PATIENTS SCORED AND GDID A POSITIVE TEST, HOW DID THEY TROY TO DISTANCE THEMSELVES IF IT PASSED? >> I THINK THAT THAT WAS INCREASINGLY HARD AND I THINK THAT I TALKED TO A LOT OF ANXIOUS CAREGIVERS AND YOU KNOW, TRIED TO ASSURE THEM ABOUT HOW TO IMPART THE BEST PRACTICES AND ABOUT LIKE MASK WEARING AND HOW TO TRY TO AT LEAST KIND OF SEPARATE SPACES LIKE BATHROOMS WHEN POSSIBLE OR OTHER HIGH CONTACT AREAS AND I THINK SOME ASPECTS OF IT WAS UNAVOID ABLE AND I THINK I FEEL LUCKY AT LEAST AT OHSU WHERE I SEE PATIENTS, THEY HAD A GOOD NETWORK OF HOTLINE THAT COULD HELP PROVIDE PATIENTS WITH ANTIBODIES OR OTHER COVID TREATMENTS THAT HOPEFULLY HELPED REDUCE THE SEVERITY OF IT WHICH I THINK ALSO I THINK IS A HUGE BOONE FOR THOSE PATIENTS WHO COULD ACCESS IT BUT YEAH, IT'S A VERY I AM PERFECT SYSTEM ESPECIALLY THOSE WITH SKILLED NURSING AND I HAD MANY PATIENTS WHO SAID IT WAS LIKE A PRISON, YOU KNOW. ONE OF MY PATIENTS STARTED TO WHEEL AROUND A CART FILLED WITH LOOKS TO DISTRIBUTE TO THE OTHER RESIDENTS JUST TO HAVE SOME FORM OF HUMAN CONNECTION AND MADE NOT JOKES ABOUT HOW IT FELT LIKE A PRISON PROGRAM AND IT WAS REALLY TRAGIC AND VERY ISOLATING AND I THINK THAT BECAUSE OF THAT I SAW A LOT OF PATIENTS DECLINE JUST BECAUSE DECONDITIONING BECAUSE OF LONELINESS AND BECAUSE OF DELAYING THEIR THERAPY AND BECAUSE OF DIFFICULTY WITH ACCESS AND WE'RE STILL TRYING TO CLAW OUR WAY OUT OF THAT. I WANT TO TALK A LITTLE BIT ABOUT HOW THIS HAS IMPACTED YOUR RESOURCE AND I NOTICE THAT YOU SAID THAT A LOT OF PEOPLE DON'T HAVE INTERNET ACCESS TO BE ABLE TO ACCESS TELEHEALTH AND I THINK WE'VE SEEN A LOT OF RESOURCE SHIFT NO AN INTERNET-DELIVERED MODEL AND I'M JUST CURIOUS YOU KNOW, HAVE YOU THOUGHT AT ALL ABOUT DOING MANY MORE TELEPHONE-BASED OR DOES IT REALLY NEED TO BE INTERNET BASED TO REACH THE POPULATION AND THE WAY YOU NEED TO REACH THEM. >> THAT'S AN EXCELLENT QUESTION. SO A LITTLE BIT OF BACKGROUND. MY K23 CLINICAL TRIAL IS LOOKING AT IF AEROBIC EXERCISE CAN HELP REPAIR MYELIN FOR PEOPLE WITH MS SO WE CONCEIVED THAT PROJECT THAT THE EXERCISE SESSIONS WOULD BE DONE IN PERSON AT A GYM ON OUR CAMPUS AND WITH THE PANDEMIC, REALLY HAD TO SHIFT THAT TO A VIRTUAL DELIVERY EX IT WAS ALL CONDUCTED OVER THE INTERNET AND I THINK THAT IT'S PROBABLY EFFECTED WITH DIFFERENT POPULATIONS AND I'VE GOTTEN A LOT OF POSITIVE FEEDBACK FROM MY PARTICIPANTS THAT THEY WOULDN'T HAVE BEEN ABLE TO PARTICIPATE IF IT HAD BEEN AN IN-PERSON MODEL, ESPECIALLY THOSE WHO ARE YOUNGER AND STILL MAY BE EMPLOYED OR WHO JUST HAVE NOBILITY ISSUES THAT HAMPER THEIR ABILITY TO PARK AND NAVIGATE AN INHOUSE INTERVENTION AND SO I HAVE REALLY SEEN THAT ABILITY TO TAKE THESE INTERVENTIONS VIRTUALLY AS A REAL OPPORTUNITY AND WE WERE ABLE TO SECURE SOME FUNDING FROM FOUNDATION ACCOUNTS THROUGH PRIVATE DONORS TO PROVIDE PARTICIPANTS WITH A iPOD THAT WAY THEY COULD CONNECT FOR THE VISITS IN CASE THEY DIDN'T HAVE A SMARTPHONE OR OTHER PORTABLE DEVICE THAT CAN AND IT'S GOING TO TAKE A LONGER CONVERSATION TO REALLY FIGURE IT OUT. I WAS REALLY APPRECIATIVE THAT YOU KNOW, THE NIH WAS ACCOMMODATEING AND ALLOWED US TO SHIFT. IT REALLY HELPED A LOT OF OUR PATIENTS. AND PARTICIPANTS. >> JUST TO ADD ON TO THAT CONVERSATION A LITTLE BIT, THE GENERAL ISSUE OF ANXIETY IN THE LACK OF INFORMATION HOW DOES THAT AFFECT POPULATION LIKE YOURS WHERE YOU KNOW, MS FOR EXAMPLE WHERE THERE AR ARE AND ANXIETY AND SOMEONE'S STATE OF MIND AND DOES THAT SHOW UP IN YOUR POPULATIONS? >> I THINK TO. I THINK SO. ESPECIALLY AROUND A LOT OF THE VACCINE CONVERSATIONS. BECAUSE AMOUNT OF PATIENTS NOW ARE ON THERAPIES OR OTHER THERAPIES THAT REDUCE THEIR BODIES' ABILITY TO HAVE A RESPONSE TO THE VACCINE AND SO THERE WAS A LOT OF CHANGING AND SHIFTING GUIDANCE ABOUT TIMING OF THE VACCINE WITH THEIR INFUSIONS OR OTHER THERAPIES AND HOW BEST TO DO THAT AND SO I THINK THAT IT WAS INTERESTING TO SORT OF HAVE THESE -- IT ENTERED MORE NO THE CONVERSATION I THINK WITH OUR PATIENTS ABOUT HOW SCIENCE IS CONDUCTED AND HOW ITERATIVE IT IS AND TRYING TO LIKE USE BEST PRACTICES AT THE TIME. AGAIN, I THINK THAT THIS IS WHERE SOCIETIES, LIKE NATIONAL MS SOCIETY WERE VERY HELPFUL IN GIVING LAY LANGUAGE AND DESCRIPTIONS ABOUT HOW TO APPROACH SOME OF THESE QUESTIONS. AND USING THE MOST UP-TO-DATE INFORMATION AND THE TOP EXPERTS IN THE FIELD. >> THANK YOU FOR THAT WONDERFUL PRESENTATION AND GREAT DISCUSSION AFTERWARDS AND WE APPRECIATE YOUR TIME MAN. >> THANK YOU. >> NEXT TOPIC WILL BE REVIEW OF THE PLAN FOR NCMRR INFRASTRUCTURE SUPPORT WHICH THERESA WILL LEAD THAT DISCUSSION. >> >> IT WAS GOOD TO SEE YOUR REFERENCES AND VISITING NIH AND SA BAD CAL HERE AND IT WAS NICE TO SEE THEIR NAMES. OK. LAST BIT OF STUFF TO THROW AT YOU ALL, I APPRECIATE EVERYONE HANGING IN THERE AND I KNOW IT'S A LONG COUPLE DAYS. AND I DON'T THINK THIS WILL TAKE THE FULL 45 MINUTES WE HAVE ON THE AGENDA SO HOPEFULLY WE CAN BE A LITTLE BIT QUICKER. BEFORE I START, I WANT TO ACKNOWLEDGE RALPH AND HIS WORK WITH THE INFRASTRUCTURE NETWORK. THIS HAS BEEN HIS BABY FOR A LONG TIME, I WON'T SAY HOW LONG. AND HE HAS DONE JUST AN INCREDIBLE AMOUNT OF WORK IN ENGAGING WITH THE PIs AS WELL AS IN GAINING COLLABORATORS ACROSS NIH AND THIS IS REALLY A TRANS NIH AND I WANT TO THANK JOE BONNER TO HELP WITH THE MANAGEMENT OF THE CURRENT AWARDS SO THANK YOU TO BOTH OF THEM TO START. NEXT SLIDE. THE INFRASTRUCTURE NETWORKS ARE REALLY SOME OF THE PREMIERE FUNDING OPPORTUNITIES THAT WE HAVE AT NCMRR. THETHEY ARE OUR KEYTONE PROJECTS AND THEY WERE BEGUN BY THE BOARD REALLY. IN THE 1990s THEY IDENTIFIED STRUCTURE AS BEING A KEY TO BUILDING RESEARCH CAREERS AND OVER THE YEARS, WE'VE DONE MANY THINGS WITH THEM. BUT THEY'VE ALWAYS BEEN THIS SOURCE OF EXPERTISE AND STATE OF THE ART RESOURCES AND THEY HAVE DONE LOTS OF MENTORING AND PROVIDED PILOT FUNDING AND WE TRIED TO KEEP THE PROGRAM FRESH BY REALLY ENCOURAGING TURNOVER AND HIGHLIGHTING NEW AREAS OF NEED WITH EACH ITERATION. AND THE PURPOSE OF ALL OF THIS IS TO IMPROVE THE NUMBER AND QUALITY OF REHAB RESEARCH APPLICATIONS ACROSS ALL OF NIH. THESE ARE THE FIVE PHASES WE ARE CURRENTLY IN. WE BEGAN IN 2000 AND 20 PLUS YEARS AGO AND THE CENTERS AT THAT POINT WERE MORE GEOGRAPHICALLY BASED. AROUND THE COUNTRY WE FUNDED FOUR CENTERS AT ABOUT $4 MILLION PER YEAR SO TOTAL COSTS SO EACH CENTER GOT ABOUT A MILLION DOLLARS A YEAR. SO KEEP THAT IN MIND AND THAT WAS IN 2000. AND THEN, WE HAVE REISSUED IT OVER THE YEARS AND EVERY FIVE YEARS AND THEY EXPIRE. WE HAVE SWITCHED TO AN EXPERTISE FOCUS AND WE HAVE BROUGHT IN CO FUNDERS AND NINDS, MCIIH AND NINR HAVE ALL CONTRIBUTED TO CO FUNDING OVER THE YEARS AND WOVE INCREASED THE NUMBER OF CENTERS UP TO SEVEN AT ONE POINT AND WE'VE ADDED MORE COORDINATION BETWEEN THE CENTERS. AND INFORMALLY AND AD HOC IN THE BEGINNING AND THEN FINALLY IN THIS LAST ITERATION, MAKING IT A FUNDED COMPONENT SO THE CENTERS WORK TOGETHER AS A NETWORK. WE HAVE TRIED TARGETING SPECIFIC AREAS OF SCIENCE THAT NIH SAW AS A NEED TO HAVE RESOURCES. AND SOMETIMES THAT'S WORKED AND IT'S IT HASN'T. WE'VE SWITCHED MECHANISMS FROM THE R24 AT ONE POINT TO THE P2C THAT IT IS CURRENTLY AND THERE ARE PLUSES AND FINE USES T MINUS AND WE'VE PUT LIMITS ON HOW MANY RENEWALS THE CENTER COULD HAVE TO FORCE INNOVATION AND TO KEEP IT FRESH. BUT THIS SHOWS YOU WHERE WE ARE TODAY. WE'RE ABOUT HALFWAY THROUGH THE CURRENT ITERATION AND THIS IS WHY I'M COMING TO YOU, TO GET SOME FEEDBACK AND HELP IN DETERMINING WHERE THIS PROGRAM SHOULD GO IN THE FUTURE. SO THESE ARE OUR CURRENT NETWORK SITES. THE PURPOSE OF THIS IS NOT TO DRILL INTO ANY OF THESE SPECIFICALLY, BUT TO TALK ABOUT THE PROGRAM AS A WHOLE. I DID THINK IT WAS IMPORTANT FOR YOU TO SEE WHERE THEY ARE GEOGRAPHICALLY AND THEN THEIR TOPICS. NEXT SLIDE. SO WHAT DO THOSE INFRASTRUCTURE NETWORKS SITES DO? AS I SAID, THEY PROVIDE MENTORING, THEY GIVE LOTS OF PRESENTATIONS ABOUT THE WORK THAT THEY DO AND THE THINGS THAT THEY OFFER? THEY PROVIDE A LOT OF EDUCATIONAL MATERIALS AND THE FORM OF WEBINARS AND THEY'VE STARTED DOING YEARLY CONFERENCES. AND THEN EACH CENTER HAS A DIFFERENT PRODUCT THAT THEY ARE KNOWN FOR SO SOME OF THEM HAVE DATABASES OR SOME HAVE HANDS ON FOR SA BE SA BAT I CAN ALS SABBATICALS AND SCHOLARS THAT CAN BE CREATED IN SOME OF THEM AND THEY HAVE OUTREACH TO LESS RESOURCE INSTITUTIONS AND THEN EACH OF THEM HAVE A SET ASIDE TO DO SOME PILOT FUNDING OF THEIR OWN AND SO THEY HAVE SMALL AMOUNTS OF GRANTS THAT THEY CAN GIVE TO SCHOLARS EITHER WITHIN OUR OUTSIDE THEIR INSTITUTION. ONE OF THE THINGS THAT WE VALUE IS THE DIVERSITY OF THE PRODUCTS THAT THEY CREATE SO WE HAVE A LOT OF DIFFERENT OUTCOME METRICS THAT WE'VE BEEN TRACKING SO THINGS LIKE PUBLICATIONS OR THEIR WEBSITE HITS AND SUBSTANTIVE COLLABORATIONS THAT THEY HAVE BUILT ON AND HOW MUCH OUTREACH THEY'RE DOING IN PRESENTATIONS OR WEBINARS AND THE NUMBER OF APPLICATIONS THAT THEY'RE GETTING FOR PILOT AWARDS AND HOW THE NUMBER OF AWARDS THEY'RE MAKING AND WHERE THOSE AWARDS ARE GOING AND WHERE THEIR SCHOLARS ARE COMING FROM AND THEN ULTIMATELY THE HOPE IS THESE PEOPLE WILL CREATE RESEARCH APPLICATIONS ALTHOUGH IT'S NOT ALWAYS EASY TO DRAW THOSE LINES. RESEARCH ISN'T A DIRECT A TO B THERE'S A LOT OF OF INTERSECTIONS IN THOSE NETWORKS. NEXT SLIDE. WE'VE BEEN VERY, VERY SUCCESSFUL BUT NOT WITHOUT CHALLENGES. HOW DO WE MEASURE THE IMPACT OF THE NETWORK OR WHAT IS OUR RETURN ON INVESTMENT? WE DO HAVE A LOT OF BENCHMARKS WE CAN COMPARE AGAINST OURSELVES BUT I DON'T KNOW THAT -- IS THAT GOOD OR NOT? I DON'T ALWAYS KNOW. WE HAVE VASTLY DIFFERENT SCIENCE IN THE CENTERS. SO, HOW DO WE COMPARE BETWEEN THEM OR IS IT EVEN FAIR TO DO THAT? ARE WE GIVING INSTRUCTIONS ON HOW TO PRIORITIZE THE PILOT AWARDS APPROPRIATELY? AS I SAID, WOVE TRIED FROM AN NIH PERSPECTIVE TO PUSH SPECIFIC TOPICS THAT WE THOUGHT THE FIELD NEEDED AND SOMETIMES WE DON'T GET APPLICATIONS IN THOSE AREAS SO DOES IT MEAN THERE'S A REALLY BIG NODE AND NO ONE CAN STEP INTO FILL IT AND OR IS IT A CASE WHERE THE FIELD HAS A BETTER IDEA OF THE NEEDS AND THEY'RE PRESENTING THEM TO US. THE PI FOR THEIR PATIENTS AND WORKING WITH US BECAUSE IT'S NOT BEEN EASY. PARTICULAR LOPARTICULARLY ON TRAINING OR CAREER DEVELOPMENT. SO MY ASK TO YOU ALL, IS I WOULD LIKE TO CREATE A IT'S NOT TO EVALUATE THE AWARDS WE HAVE BUT TO LOOK AT THE SCOPE OF WHAT ARE THE NEEDS IN THE REHABILITATION FIELD FOR INFRASTRUCTURE AND IS THIS THE SYSTEMS WE HAVE MEETING THOSE NEEDS AND WE'LL NEED TWO CO-CHAIRS WHO WILL VOLUNTEER TO HELP STEER THIS AND WE ARE ABLE TO BRING IN EXTERNAL EXPERTISE AS WELL SO IF PEOPLE WOULD BENEFIT IS IT'S IMPORTANT WHICH PUT OUT A GENERAL REQUEST TO INFORMATION FOR THE PARALLEL SO ONE OF THE FIRST TASKS THE GROUP WOULD BE TO HELP INFORM WE'RE TARGETING THE THIRD WEDNESDAY OF THE MONTH AND WE'VE BLOCKED TIME ON CALENDER AND THE FULL AT IF THAT DOESN'T WORK WE DO HAVE SOME FLEXIBILITY AND THE TIMELINE IF IT DID TAKE UNTIL MAY AND I REALLY WANT TO EMPHASIS THAT SO IF I WANT TO MAKE SURE WE'RE GOOD STEWARDS OF THE TAXPAYER DOLLARS AND SO WITH THAT I'M GOING TO STOP. >> JUST ONE CLARIFYING POINT. KEY POINT IN BEING ABLE TO ASSESS THIS INFRASTRUCTURE PROGRAM AND MAKE RECOMMENDATIONS IS UNDERSTANDING THE GOALS AND YOU MENTIONED A FEW OF THOSE GOALS, ONE WAY WAS TO INCREASE THE NUMBER IN QUALITY OF APPLICANTS BUT I'M SURE THERE ARE MANY OTHERS AND ARE THOSE GOALS AS PART OF THE COMMITTEE IS TAKE CHARGE TO HELP NCMR SET THOSE GOALS OR ARE THEY SET IN STONE? >> I WOULD SAY THEY'RE NOT SET IN STONE. IF THE FIELD SAYS THERE'S SOMETHING MORE WE NEED TO BE DOING, THERE'S SOMETHING MORE PRESSING AND IMPORTANT, YOU KNOW, MY EARS ARE OPEN TO THOSE SUGGESTIONS. >> GREAT. >> >> I WANT TO REFLECT THIS BACK TO OUR DISCUSSION THIS MORNING ON THE NIH RESEARCH PLAN AND WE TALKED ABOUT SOME OF THE GOALS IN THERE AND WE SAW HOW IN SOME CASES THERE ARE YEARS THAT NIH FEELS ARE IMPORTANT BUT THEY'RE UNDERSERVED SO FAR AND WE'RE NOT GOING TO HAVE THAT SO THIS PROMOTING RESEARCH INFRASTRUCTURE IN CERTAIN DOMAINS COULD BE A KEY WAY FOR INCENTIVIZING COLLABORATIONS AND GETTING RESEARCH STARTED AND CERTAIN AREAS AND BECAUSE IF SOME OF THOSE DOMAINS ARE FALLING SHORT IN APPLICATIONS BECAUSE OF THE NEED FOR CERTAIN CENTRALIZED INFRASTRUCTURE, THIS COULD BE A WAY TO ADDRESS IT. AND OF COURSE, THIS PROGRAM ALSO TIES IN VERY WELL WITH OUR LONG-TERM COMMITMENT TO TRAINING AND CAREER DEVELOPMENT AS WELL. SO, IN HAVING DISCUSSIONS, THINK BACK TO THE RESEARCH PLAN HOW DO WE FELL IN SOME OF THE NEEDS THERE AND ALSO HOW DO WE PROMOTE BROADER RESEARCH AND KA ROAR DEVELOPMENCAREERDEVELOPMENT SO I WANTED TO PUT THAT OUT THERE AS WELL. >> ANY OTHER QUESTIONS OR COMMENTS? >> SHE'S LOOKING FOR VOLUNTEERS AND I THINK PROBABLY THE MOST EFFECTIVE WAY IS JUST TO E-MAIL YOU DIRECTLY AND ANYONE IS INTERESTING AND PLEASE PARTICIPATE. >> I'M NOT LOOK TO GO VOLUNTEER BECAUSE I'M ROTATING. MY HAND CAME UP JUST AS WE WERE ASKING THAT. I THINK I HAVE A QUESTION/COMMENT FOR THERESA. I APPRECIATE THE CHRONOLOGY WAS VERY HELPFUL TO SEE HOW WE'VE SHIFTED THE INFRASTRUCTURE AND I GO THAT INFRASTRUCTURE REALLY SAY BIG PART OF OUR RESEARCH AND OF THIS STRATEGIC PLAN AND ANOTHER THING THAT I GUESS IS THE BALANCE. IT'S LIKE HOW LONG DO THE CENTERS HAVE TO BE IN ORDER TO SHOW THE PRODUCTIVITY THAT EVENTUALLY PAYS OFF AND HOW QUICKLY DO THEY HAVE TO REINVENT THEMSELVES OR DO WE HAVE TO REINVENT THEM INTO SOMETHING TO MORPH THEM NO SOMETHING NEW AND I JUST AM KIND OF TORN WITH THE FACT THAT FOR EXAMPLE THE CENTERS AND ALL THAT, THEY'RE FAIRLY NEW AND THEY GET LIKE A FIVE-YEAR SPAN AND WITHIN THAT FIVE YEARS WHEN WE LOOK AT IT, EVEN WHEN YOU LOOK AT RO1, IT'S VERY LIMITED TIME TO PRODUCE, LIKE ESPECIALLY LONG LASTING IMPACTS. I'M WONDERING WHETHER THERE'S A THOUGHT OF MAKING THIS AND I GO BACK TO NSF FOR THE CENTERS THAT HAVE HAD LIKE THEY GET THEM FOR 10 YEARS AND BY THAT TIME THEY'VE GOTTEN SOME TRACTION AND PEOPLE KNOW ABOUT THEM AND PEOPLE A EMPLOYED TO THEM BECAUSE THEY KNOW ABOUT THE EXISTENCE AND THEY THEMSELVES DON'T FEEL FRAIL OR A LITTLE BIT AT RISK OF LOSING FUNDING AND THEREFORE THEY DON'T POPULATE LIKE I'M THINKING IN TERMS OF UNIVERSITIES IS THAT IF THEY HIRE PEOPLE TO COME IN AND HELP WITH THE FUNDED PROJECT, AS SOON AS THAT FUNDED PROJECT GOES, THEY ALSO LEAVE BECAUSE THERE'S NO MONEY TO FUND THOSE PEOPLE FOR THOSE PROJECTS AND I FEEL LIKE THE SAME THING HAPPENS WITH CENTER GRANTS AND WITH CENTERS. THAT THE QUICKER THERE'S A TURNOVER, THE MORE DIFFICULT IT IS FOR THE INSTITUTIONS TO KIND OF LIKE SETTLE, EXPAND, BE KNOWN FOR AND INVEST THEMSELVES AND INVEST IN THAT ACTIVITY SO I GUESS I'M THINKING HERE ABOUT EXPANDING THAT WINDOW BUT MORE WITH AN EYE ON REGENERATION AND EXPANDINEXPANDING THEMSELVES AND GIVING THE PUBLIC TIME TO KNOW ABOUT THEM, IN ORDER FOR THEM TO USE THEM OR GO TO THEM. I GUESS I'M GOING TO STOP AND GET YOUR REACTION. >> THESE ARE ALL EXCELLENT POINTS. WE'VE BEEN DOING THESE IN FIVE-YEAR BLOCKS. BECAUSE I DON'T KNOW, THAT'S THE WAY NIH WORKS, WE DO THINGS IN FIVE-YEAR BLOCKS. AND MAYBE THAT'S NOT HOW WE SHOULD BE DOING THIS. MAYBE WE SHOULD BE DOING -- RALPH IS GOING TO KILL ME BUT MAYBE WE SHOULD BE DOING A COUPLE EVERY YEAR AND WE HAVE A RAMP UP OR THERE'S SOME PHASED WAY OF STARTING AND MATURING. THERE ARE OTHER MODELS FOR THIS. >> I WANTED TO ADD, THAT NIH FORCES TO FUND IN FIVE-YEAR BLOCKS BUT WE ALLOW A CENTER THAT HAS MOMENTUM TO KEEP GOING FOR A SECOND BLOCK. BUT THEN WE FIGURE 10 YEARS IS ENOUGH TRAINING WHEELS AND WE HAVE TO HAVE SPACE FOR NEW ONES SO. >> THEY NEED TO RECOMPETE AFTER FIVE YEARS BUT WE ALLOW ROW COMPETITION. >> I THINK AFTER 10 YEARS, SOMEONE HAD 10 YEARS AND THEY SHIFTED WHAT THEY WERE DOING. SO YOU DON'T LOOSE THAT MOMENTUM. >> YEAH, UM, I HAVE TWO QUESTIONS. THE FIRST ONE IS TO WHAT EXTENT, BECAUSE OF THE PUBLIC-PRIVATE PARTNERSHIP OR MORE GENERALLY UNIVERSITY INDUSTRY GOVERNMENT, PARTNERSHIP, WHAT IS CONSIDERED OR ARE IN BEDDED WITHIN THE CURRENT CENTERS AND MY QUESTION SECOND IS, I THINK, GIVEN THE DIVERSITY OF THE CENTER, IT MIGHT BE GOOD TO LOOK AT PROMOTING CENTER-TO-CENTER COLLABORATION. RATHER THAN HAVING, TO EXTEND THEIR ISOLATED OR THEY'RE ACTUALLY WORKING TOGETHER AND TO CURRENTS CURRENT CHALLENGES SO THOSE ARE MY TWO QUESTIONS. >> I'LL ANSWER THE SECOND ONE FIRST. THEY MEET MONTHLY I BELIEVE AT THIS POINT AND THEY PUT IN JOINT WOULD BE NAREWEBINARS AND WORKSHOPS AND THERE'S MORE NATURAL PAIRINGS BETWEEN SOME OF THE CENTERS AND OTHERS. NOT SO MUCH. SO, THEY DO WORK TOGETHER MUCH MORE NOW THAN THEY DID? THE BEGINNING. YOUR QUESTION ABOUT PUBLIC-PRIVATE PARTNERSHIPS AND INDUSTRY, YOU KNOW, AT ONE POINT WE DID HAVE A CENTER THAT FOCUSED ON TRANSLATION AND MOVING PRODUCTS NO THE INTO THE MARKETPLACE BUT THAT WAS NOT AN INTENTIONAL MOVE BY PROGRAM THAT WAS AN APPLICATION THAT CAME IN AND DID VERY WELL AND WAS ONE OF OUR MOVE SUCCESSFUL ONCE. BUT THAT IS SOMETHING THAT THE GROUP MIGHT MAKE A RECOMMENDATION THAT WE NODE TO INCORPORATE THINGS LIKE THAT IN OUR NEXT ITERATION. >> THANK YOU. >> STEPHANIE. >> YEAH, HI. I APPRECIATE ALL OF THOSE COMMENTS BECAUSE I GUESS ONE OF THE THINGS, PARTICULARLY ERIC'S QUESTION ABOUT GOALS, ONE OF THE THINGS THAT I'VE WONDERED ABOUT THESE P2Cs AND I'VE BEEN INVOLVED AS THE DEFINITION OF IT INFRASTRUCTURE AND ARE ALL GEARED TOWARDS HELPING TRAINEES BUT IT'S LIKE YOU GET THEM PART WAY THROUGH THE PROGRESS SO I GUESS I WANT TO KNOW IF WE WILL BE ABLE TO BROADEN AND EVEN THINK OUTSIDE THE BOX FOR THE DEFINITE BECAUSE AGAIN I FEEL LIKE WE GET THESE PEOPLE UP TO ALIGN AND WE HAVE TO SAY NOW YOU ARE ON YOUR OWN AND SO THAT IS BEEN MY FRUSTRATION AND WERE W OTHER TYPES OF INFRASTRUCTURE THINGS LIKE THE TIGER AND THINGS LIKE THAT AND I'M TRAINING PROCESSES AND IT WAS LIKE IT WENT TO A POINT AND THEN STOPPED AND I FEEL LIKE THEY ARE FORCE TODAY DO THE SAME THING AND I AM THINKING ABOUT VOLUNTEERING AND I WANT TO MAKE SURE THAT WE CAN THIN.ANY QUESTIONS OR COMMENTS? YOU WILL GET A NUMBER OF VOLUNTEERS IN YOUR E-MAIL TODAY. >> IF NOT, I KNOW WHERE TO FIND YOU ALL. [LAUGHTER] >> THANK YOU. >> SO, OUR LAST ITEM OR SECOND TO LAST ITEM IS THAT WE THIS TIME OF THE YEAR WE ALWAYS HAVE TO SAY GOOD-BYE TO SOME OF OUR LONGSTANDING MEMBERS AND RALPH WOULD LIKE TO INTRODUCE THEM AND GIVE THEM A CHANCE TO SAY A FEW WORDS. >> WELL, PEOPLE HAVE FOUR-YEAR TERMS AND SO JUST ABOUT THE TIME THEY UNDERSTAND THE PROCESS AND NIH AND REHAB, WE HAVE TO SAY GOOD-BYE TO THEM AND THIS IS A CHANCE FOR THE PEOPLE WHOSE TERMS ARE FORTUNATELY ARE ENDING TOO SOON TO IMPART THEIR WISDOM TO THE OTHER MEMBERS OF THE BOARD WHO ARE STAYING TO INSPIRE THEM AND SEE WHAT THEY'VE LEARNED AND SO ON AND ANY OTHER PARTING SHOTS THEY WANT TO MAKE AND THESE ARE ALL PEOPLE WHO WE APPRECIATE THE FACT THAT YOU'VE TAKEN TIME OUT FROM YOUR PROFESSIONAL DUTIES AND YOUR ACADEMIC RESPONSIBILITIES AND TO SERVE ON THIS BOARD AND TO BRING US INFORMATION AND ALSO FOR ABOUT WHAT YOU DO BACK IN YOUR HOME COMMUNITIES AND SPREADING THE WORD. WE HAVE FOUR MEMBERS WHO ARE RETIRING AND WE'VE GIVE EACH PERSON A CHANCE TO SAY THEIR DUE AND SHED TEARS, WE HAVE ART ENGLISH, THUBE KOLOBE, BARBRA LUTZ AND ROB WUDLICK. ART, THE FLOOR IS YOURS. >> THANK YOU, RALPH. I APPRECIATE THAT. TO A SADNESS I COME TO THE END OF MY FINAL MEETING WITH THIS BOARD, I'VE REALLY LOVED BEING A MEMBER OF THE BODY AND I LOVED LEARNING ABOUT ISSUES RELEVANT TO THE FUTURE OF REHABILITATION MEDICINE. AS A BASIC SCIENTIST, I KIND OF FEEL LIKE I'VE SPENT MUCH OF MY TIME ON THIS BOARD LISTENING BUT I ALSO WANT EVERYONE TO KNOW THAT SOME OF THAT TIME AT LEAST WAS SPENT LEARNING. I'VE COME TO APPRECIATE MUCH MORE THAN I EXPECTED THE BREADTH OF CLINICAL REHAB AND THE ISSUES THAT ARE SURROUNDING IT T I'VE ALSO BEEN ABLE TO SEE HOW BASIC RESEARCH SUCH AS MINE, AND THAT OF OTHERS LIKE ME, CONTRIBUTES TO THE FUTURE OF REHABILITATION MEDICINE. AND THE PRIVILEGE OF SERVING AS YOUR REPRESENTATIVE TO THE NICHD ADVISORY COUNCIL THIS EDUCATION HAS BEEN MORE INTENSE. I WAS REALLY I'VE SERVED HALF MY TIME IN-PERSON AND HALF VIRTUAL. I HAVE TO ADMIT THAT I'VE REALLY ENJOYED THE VIRTUAL MEETINGS IN TERMS OF THEIR GIVE-AND-TAKE ON THE PRESENTATIONS MADE. AT MY AGE, I HAVE LOVED NOT HAVING TO TRAVEL AND LOVED BEING ABLE TO ATTEND THE MEETINGS FROM MY HOME OFFICE. HOWEVER, I'VE GREATLY MISSED THE SOCIAL ASPECTS OF THE IN-PERSON SESSIONS CHATTERIN CHATTING OVER MEALS OR AT BREAKS IS GREAT TO KNOW MY BOARD MEMBERS AND IT'S NOT POSSIBLE OVER THE LAST TWO YEARS. I GOT TO KNOW MY FELLOW CLASSMATES THROUGH THESE ENCOUNTERS BUT I REALLY WISH I HAD MORE OPPORTUNITY TO GET TO KNOW THE NEW MEMBERS BETTER. I HOPE THAT SOME COMBINATION OF IN-PERSON AND VIRTUAL MEETINGS OR EVEN HYBRID MEETING WILL BE PART OF THE FUTURE. I WANT TO THANK ALL MY BOARD MEMBER COLLEAGUES FOR THIS EXPERIENCE AND ESPECIALLY TO THERESA AND RALPH FOR CONTINUAL SUPPORT AND ENCOURAGEMENT IN FOR GIVING ME THE PRIVILEGE TO SERVE. IT WAS A GREAT EXPERIENCE, THANK YOU. >> THANK YOU, ART. I APPRECIATE YOU ALSO SERVING AS THE LIAISON AND ATTENDING EXTRA MEETINGS TO THE NICHD COUNCIL. THE FLOOR IS YOURS THUBE. LET'S HAVE YOUR PERSPECTIVE AND COMMENTS. >> HI. SOME OF MY PERSPECTIVE PROBABLY ARE GOING TO BE LIKE ARTS ART'S. AS I RESPECTED ON THIS TIME. THROW THINGS CAME TO MIND AND THOSE ARE THE THREE THINGS THAT I WOULD LIKE TO KIND OF FOCUS ON IS TO KEEP THEM BRIEF. THE FIRST ONE BEING THE NCMMR STUFF AND IT'S WEIRD, WHAT IS SHE GOING TO SAY ABOUT THOSE AND WHAT I CALL THE PLACE AT THE TABLE AND THE THIRD ONE BEING CONNECTIONS THAT BROUGHT UP FRIENDSHIPS. LET ME COMMENT ABOUT THE FIRST ONE FIRST. I THINK SERVING ON THIS BOARD HAS NOT ONLY PROVIDED ME WITH A BROADVIEW OF GRANTS MAKING MACHINERY, THAT'S WITHIN THE NICHD AND IT ALSO MADE ME APPRECIATE A WHOLE LOT MORE OF THE HARD WORK THAT THE NCMRR STAFF DOES. AND THE BEHIND OF SCENES SORT OF THINGS. SUCH AS PREPARING FOR CONCEPTS AND SUCH AS OUTREACH TO STAKEHOLDERS. PRIORITIZING FINDINGS WITH VERY SMALL BUDGET. THEIR EFFORTS IN TRYING TO GROW THE RESEARCH PIPELINE, PREPARING THINGS LIKE TODAY'S MEETINGS OFFERINGS LIKE NIH IMPLEMENTATION RESEARCH PLAN PROGRESS REPORT INVITING PRESENTERS WHICH WE ALL KNOW THOSE ARE ORGANIZED MEETINGS AND CONFERENCES OR WORKSHOPS IS A LOT OF WORK. AND ALSO BRINGING IN SPEAKERS FROM OTHER FUNDING AGENCIES AND OTHER ICs WHICH BY THE WAY HAPPEN TO BE MY FAVORITE PARTS OF THE BOARD MEETINGS MENU. IT'S JUST GET TO GO HEAR THOSE REPORTS FROM IC PEOPLE AND ALSO FROM OTHER FUNDING AGENCIES THOSE ARE A GREAT AND I HOPE THEY WILL BE CONTINUED BECAUSE IT'S REALLY GIVING YOU A BROADER VOW THAN JUST THE NICHD AND NCMRR. I WANT TO COMMEND THE STAFF. BECAUSE ON TOP OF ALL THESE THINGS THEY DO, THEY HAVE TO RESPOND NICELY TO OUR INSISTENT DEMANDS FOR QUESTIONS, FOR FUNDING, FOR ALL THOSE OTHER THINGS SO THIS IS REALLY BEING ON THE BORDER HAS MADE ME REALLY APPRECIATE THEM. I APPRECIATED THEM BEFORE WHEN I WAS ON THIS BUT I APPRECIATE EVEN MORE WITH THE SERVING ON THE BOARD. AND THE SECOND POINT THAT I WANTED TO COMMENT ON IS RELATED TO THE PLACE AT THE TABLE. MY PARTICIPATION ON THIS BOARD IS PRESENTED THIS ASPECT OF BEING AT THE TABLE. I SERVE THE ASSOCIATION IN VARIOUS CAPACITY AND AND IN PARTICULAR THE PEDIATRIC RESEARCH COMMUNITY AND SO BEING A MEMBER ON THIS BOARD HAS ALLOWED ME TO NOT ONLY PREP RENT THEM BUT BRING BACK TO THEM INFORMATION COMING FROM THIS BOARD AND FROM THE PAST ESPECIALLY WHEN WE KNOW THINGS LIKE PREPARING FOR GRANTS THAT ACQUIRE PLENTY OF TIME TO DO AND SHARING THAT INFORMATION HAS BEEN IMPORTANT AND ALSO THEM GIVING ME INFORMATION THAT THEY WANTED ME TO BRING BACK TO THE TABLE AND IT'S IN THIS DIALOGUE THIS HELP MEMBERSHIP HIGHS THE MYTHS THAT WE USED TO HAVE ABOUT SOME PEOPLE STILL DO BUT WE USED TO HAVE ABOUT THIS SYSTEMIC BIAS IN NIH FUNDING AND SO IT'S ABLE LIKE BEING ON THE BOARD YOU ARE ABLE TO ADDRESS THOSE AND TALK TO THOSE AND TRY TO QUANTIFY ISSUES RELATED TO THIS MYTH. BUT A PLACE AT THE TABLE TO ME ALSO MEANT LOOKING OUT. LOOKING AT ISSUES THAT OOK NECKLUNIQUELY.BEING BOTH AN ETHNIC MINORIT Y AND ALSO A RESEARCHERS. MY ROLE HAS BEEN WEARING BIFOCALS. CONSTANTLY CENTERING ADJUST YOURCONSTANTLY ADJUSTING YOUR HEAD. YOU'VE SEEN IT THROUGH YOUR LENS AND THAT LENS MAY BE THE LENS OF BEING A UNDER REPRESENTED GROUP OR THE LENS BEING ETHNIC MINORITY AND HAVING TO SAY SOMETHING WAS ALWAYS KIND OF LIKE A -- IT TOOK A LOT TO SAY IT AND HOW IT COMES ACROSS BECAUSE IT'S A UNIQUE LENS AND I'M SURE THIS WILL RESINATE WITH ROB AS WELL. BUT IT JUST TAKES A LOT AND THEREFORE IT WAS IMPORTANT FOR ME, I THINK, TO FEEL SOMETIMES THAT SOMETIMES YOU FELT HEARD AND SOMETIMES YOU DIDN'T FEEL HEARD. THERE WERE SOME PROGRESS AND I FEEL LIKE THE ISSUES AND COMING IN WITH THE GEORGE FLOYD ISSUES HAVE HELPED AT LEAST RAISE THAT AWARENESS AND I COULD FEEL THE CHANGE EVEN WITHIN THE BOARD THAT NOW WE'RE STARTING TO OPEN UP FOR THE DIVERSITY AND THE PRESENTATIONS TODAY AND ALSO THE PRESENTATIONS THAT WERE DONE BEFORE BY Dr. BIANCA ON STRIVE, THEY ENCOURAGE ME AND MAKE ME THINK, OK, WE ARE BEING BROADER AND LOOKING OUT A LOT MORE. NOT THAT YOU ARE DOING THAT BUT I THINK YOU ARE DOING A LOT MORE. ON THAT PIECE, I JUST WANTED TO SHARE WITH YOU THIS SOUTH AFRICANS SAY IN SOUTH AFRICA IS THAT IF ONE HAS TO LISTEN IN ORDER TO BE HEARD. AND I WOULD ENCOURAGE THE COMMITTEE TO KEEP LISTENING, ESPECIALLY TO THOSE LOAN VOICES. THE MINORITY VOICES ON THIS CHAIN. AND THEN THE LAST POINT I WANTED TO SHARE, I REFLECTED ON, IS THAT, I MADE CONNECTIONS AND FRIENDSHIPS THAT HAVE BECOME PART OF MY ACADEMIC JOURNEY AND MANY OF THEM HAPPENED DURING THE TIME WHEN WE WERE STILL MEETING IN-PERSON SO LIKE ART, I FELT LIKE I HAVE THE FOUR PEOPLE THAT I CAME IN WITH. I WAS CLOSE TO AND I COULD RECOGNIZE THEM AND I WALKED WITH THEM AND THEY BECAME PEOPLE THAT I COULD RELATE TO EVEN AS I GET INTRODUCED INTO THE GROUP. AT THE SAME TIME, I WAS ABLE TO MEET OTHER PEOPLE THAT TRANSITIONED WHILE I WAS HERE AND THOSE PEOPLE NOW HAVE BECOME FRIENDS, SOME OF THEM I HAVE ASKED THEM TO COME AND PRESENT AT OUR UNIVERSITY, AND SOME OF THEM I'VE ASKED TO BE MENTORS ON AWARDS FOR SOME OF OUR YOUNG FACULTY WHO ARE A EMPLOYING FOR GRANTS. THIS WAS MADE MORE POSSIBLE BY THE IN-PERSON MEETINGS. BECAUSE DURING IN BETWEEN WE WOULD TALK. IN BETWEEN GOING HOME. BUT MOSTLY THAT RALPH TALKED US INTO GOING TO THE HOTEL WHERE WE WERE ASSIGNED NUMBERS BY THE WAITER AND EVEN NOW WE STILL CALL NUMBER 4 LIKE CRAIG, HE IS NUMBER 4 AND JENN NUMBER 5 AND I MISS THOSE DURING THE TWO YEARS THAT WE'VE BEEN KIND OF HIBERNATING FROM COVID-19. SO I LIKE THE IDEA THAT THERESA VOICED YESTERDAY ABOUT THE POINT THAT MAYBE GOING HYBRID IN THE FUTURE SO MAYBE ONE MEETING ON SITE AND IN FACE AND THE OTHER ONE ON VIRTUAL WORLD. SO I JUST WANTED TO CLOSE BY JUST THANKING RALPH FOR HIS TIRELESS WORK BUT FOR CONVINCING FOUR YEARS AGO THAT THIS IS DOABLE AND HE TOOK ME KICKING AND FUSSING AND KICKING AND FUSSING BUT HE CONVINCED ME THIS WAS DOABLE AND I APPRECIATE THAT HE CONTINUED TO PROVIDE THIS SUPPORT AND GUIDANCE ALONG THE WAY AND THANK YOU SO MUCH AND I'VE REALLY BEEN HONORED TO SERVE ON THIS COMMITTEE AND I THINK IT'S SOMETHING THAT MANY OF YOU ARE COMING IN NOW AND I HOPE YOU LOOK BACK THRO THREE YEARS FROM NOW AND IT WILL BE A REWARDING EXPERIENCE DESPITE THE HECTIC SCHEDULES BACK HOME. THANK YOU. >> THANK YOU FOR THE HONOR AND THE COURAGE TO SHARE THOSE REMARKS WITH US. WE'RE A WORK IN PROGRESS AND IT I'M GLAD YOU TRUSTED US ENOUGH TO SAY THAT. I GUESS, IT'S A VERY POSITIVE THING. I TAKE THAT TO HEART. THANK YOU, VERY MUCH. I WANT TO TURN IT OVER TO BARBRA WHO HELPED US WITH HER BACKGROUND IN UNDERSTANDING FAMILY AND COMMUNITY SUPPORTS AND EDUCATED US IN THOSE DOMAINS AND BARBRA, YOUR THOUGHTS AND COMMENTS. >> HI. YOU KNOW, I WANT TO ECHO WHAT BOTH ART AND THU BYBI HAVE SAID, I'M APPRECIATIVE OF THE LEADERSHIP OF ALISON AND THERESA AND RALPH. YOUR STEADFAST LEADERSHIP THROUGH THE LAST FOUR YEARS AND Dr. BIANCHI AT NICHD AND THEN THE STAFF FOR SUPPORTING US FOR ALL THE MEETINGS AND THE PLANNING THAT WENT ON TO PRESENT THESE GREAT MEETINGS THAT WE'VE BEEN ABLE TO ATTEND FOR THE LAST FOUR YEARS. I HAVE REALLY MISSED SEEING EVERYBODY IN-PERSON. AT HOME, ZOOM WORKS GREAT BUT I CAN GET UP AND LET THE DOG OUT AT LUNCH BUT I REALLY ENJOY THE SOCIALIZING AND FELT CLOSE TO MY COHORT, ART AND THUBE AND ROB. WE CAME IN TOGETHER SO WE HUNG TOGETHER BUT I ALSO GOT TO MEET OTHER PEOPLE ON THE BOARD AND THEN THELY SA THE LIAISON FROM THE AGENCIES AT THE MEETINGS AND HAD SOME GREAT CONVERSATIONS WITH SOME OF THOSE FOLKS. SO, I HOPE TOO YOU WILL CONTINUE TO MAYBE DO A HYBRID SO THAT YOU WILL HAVE SOME MEETINGS IN-PERSON AND THERE'S A REAL VALUE IN THOSE CONNECTIONS THAT YOU'VE HARD FROM OTHER FOLKS. AND I HAVE LEARNED SO MUCH. I AM NOT A MAD SCIENTIST AS MANY OF YOU HEARD ME TALK. I'VE LEARNED SO MUCH ABOUT BASIC SCIENCE, ALL THE WAY THROUGH TO TRANSLATING RESEARCH AND INTERVENTIONS INTO PRACTICE AND SO IT'S JUST -- THE PRESENTATIONS AT THIS MEETING REALLY HIT HOME FOR ME. THE ONES YESTERDAY AND TODAY. THE ONE ON COVID AND DISABILITIES WAS JUST SO INSIGHTFUL AND I WAS REALLY GLAD SHE SHARED HER SLIDES WITH US BECAUSE I'LL TAKE THAT BACK TO FACULTY AND MY REHAB NURSING COLLEAGUES. I WAS REALLY HAPPY TO WORK ON THE STRATEGIC PLAN AND ENSURE THE CONTINUED INCLUSION OF COMMUNITY AND FAMILY AS A SPECIFIC PRIORITY AREA. I KNOW IT'S NOT AS HIGHLY FUNDED. I THINK IN PART BECAUSE IT TENDS TO BE NURSE AND SOCIAL WORKERS AND WHO WORK WORK IN THAT AREA AND THEY'RE NOT ASPER FACT IN NIH RESEARCH PARTICULARLY IN ROW HAB SO I HOPE WE CAN CONTINUE TO ENCOURAGE THAT BECAUSE I THINK AS WE HEARD YESTERDAY, AFTERNOON, HAVING A BROADER APPROACH THROUGH THE RESEARCH AND THAT INCLUDES PARTICIPATION OF THE ICF AND QUALITATIVE DATA THAT EXPLORES PATIENT AND FAMILY EXPERIENCE THIS IS ADDITION TO THE MEDICAL SIDE OF REHABILITATION SO I REALLY HOPE THAT WE CAN CONTINUE TO BROADEN THAT PERSPECTIVE AND SEE MORE WORK IN THAT AND IN THOSE AREAS. AND I JUST HAVE TO POINT OUT AND SAY THAT I WAS REALLY HONORED AND PRIVILEGED TO BE THE ONLY NURSE FOR FOUR YEARS ON THE BOARD. AND AS WE ALL KNOW, NURSES ARE CRUCIAL MEMBERS OF THE INNER PROFESSIONAL REHABILITATION TEAM SO I HOPE AND MCMRR WILL CONTINUE TO HAVE A REHAB NURSE ON THE ADVISORY BOARD. I THINK NURSES BRING A DIFFERENT PERSPECTIVE OFTEN, PARTICULAR LOW WITH A FOCUS ON PATIENT FAMILY EXPERIENCES AND COMMUNITIES THROUGH OUT THE WHOLE REHAB CONTINUUM AND THROUGHOUT KIND OF A LIFELONG APPROACH TO PROVIDING THE KINDS OF INTERVENTIONS THAT HELP PEOPLE WHO HAVE DISABILITIES LIVE INDEPENDENTLY AND DO WHAT THE REST OF US, WHAT ANYBODY CAN DO AND THE SAYING IS IF YOU DO HAVE A DISABILITY, NOW, YOU WILL HAVE ONE AT SOME POINT. WE'LL ALL BE DISABLED AT SOME POINT. WHAT YOU HEAR SO I REALLY DO APPRECIATE THAT SO I HOPE YOU WILL CONTINUE TO HAVE A NURSE, A REHAB NURSE AS A MEMBER OF THE ADVISORY BOARD AND IT'S REALLY IMPORTANT TO HAVE THE NURSING PERSPECTIVE AND I LOOK FORWARD TO SEEING THE CONTINUING PROGRESS OF NCMRR AND THE ADVISORY BOARD AND THANK YOU SO MUCH. IT WAS A REAL PRIVILEGE TO BE PART OF OF THIS GROUP AND PART OF THE PROCESS AND IT REALLY DID ENJOY IT. THANK YOU. >> THANK YOU, VERY MUCH, BARBRA. ROB, THANK YOU FOR BRINGING IT TO US. I REALLY APPRECIATE YOUR INNER STRENGTH AND THIS THING ABOUT THE HYBRID MEETINGS, IT ROW MINDS MREMINDSME, I MISS YOUR MOM. SHE USED TO COME TO THE BOARD MEETINGS TOO. I WELCOME YOUR REMARKS AND YOUR REFLECTION ON THIS. THANK YOU, RALPH. AND YOU KNOW, IT'S BEEN AN HONOR TO SERVE ON THIS BOARD FOR THE LAST FOUR YEARS AND IS IT'S BEEN POSITIVE AND INFORMATIVE AND GREAT EXPERIENCE. I'M REALLY GLAD THAT IS COMMUNITY MEMBERS LIKE MYSELF ARE INVOLVED IN THIS AND THAT YOU FOUND SOMEONE TO CARRY THE TORCH AFTER ME SO, IN THE SPINAL CORD INJURY AREA. AND YOU KNOW, I DO MISS THE CONNECTIONS AND THE FRIENDSHIPS AND ALL THAT FROM THE PRE-COVID DAYS AND I THINK I REALLY ENCOURAGE A HYBRID MAYBE ONE, MAYBE THE MAY MEETING IN-PERSON WHERE IT'S A LITTLE BIT WARMER. YEAH, THAT EXPERIENCE I THINK BEING ABLE TO CONNECT AND SHARE AND JUST DISCUSS IDEAS AND BRING THEM FORWARD I THINK ARE, THAT'S INVALUABLE AND THE BRAINSTORMING DOESN'T HAPPEN THIS WAY. I WANT TO THANK YOU, RALPH, ESPECIALLY FOR FOR HELPING MENTOR ME AND GETTING ME ON HERE AND TO THERESA TOO AND ALISON. I REALLY APPRECIATE YOUR LEADERSHIP AND DRIVE TO MOVE THIS FORWARD. AND EVERYONE ELSE AT MCMRR AND SOME PARTING WORDS OF ENCOURAGEMENT, YOU KNOW, IS THAT AS A PATIENT AND SOMEONE WITH A SPINAL CORD INJURY, I THINK IT'S -- THERE' S A LOT OF THINGS THAT WE'RE ALL FOCUSED IN OUR LITTLE MOTORCYCLE RO MICROCLIMATE AND KEEP ING THE END RESULT IN MIND. MY GOAL IS TO PUSH SCIENCE FORWARD AS DUEFULLY AND ALSO FAST AS IT CAN. I HAVE A SENSE OF URGENCY AS A HIGH LEVEL QUADRIPLEGIC IN THE LAST FOUR YEARS MY PHYSICAL HEALTH HAS GOTTEN WORSE. MY CARE GIVING SUPPORT TEAM, I MEAN, IT'S JUST CRUMBLING. WITH THE ECONOMY TODAY AND EVERYTHING ELSE GOING AROUND WITH HOME CARE, IT'S GETTING A LOT WORSE. OUR STATE IS CONSIDERING CALLING IN A NATIONAL GUARD TO DO HOME CARE AT TIMES AND THERE'S A BIG PUSH FOR -- THERE'S A LOT IN MY COLLEAGUES AND PEARSON ARE BEING INSTITUTIONALIZED RIGHT NOW SO IT'S GOTTEN WORSE. HOPEFULLY WE CAN DO THINGS AND SEE THINGS THAT WILL ADDRESS THAT. I THINK SNAG I'VE DONE IS TRIED TO THINK BEYOND MYSELF AND THE WHOLE STAKEHOLDER PERSPECTIVE AND I ENCOURAGE ALL THE OTHER BOARD MEMBERS TO DO THAT AND TAKE THE LENSES OFF AND LOOK AROUND. I REALLY APPRECIATE THE COMMUNITY'S SUPPORT AND COMMUNITY INVOLVEMENT. THAT'S ONE THING THAT I'M GLAD TO SEE HAS IMPROVED QUITE A BIT. IN THE LAST FOUR YEARS AND I SEE IT MORE AND MORE OPPORTUNITIES AND I ENCOURAGE MORE PEOPLE WITH DISABILITIES AND CONDITIONS TO GET INVOLVED IN THE RESEARCH AND THINGS THAT ARE GOING TO IMPACT THEM DOWN THE ROAD. AND IT'S VERY ENCOURAGE TO SEE THIS HAPPEN. I WANT TO THANK YOU ALL. YOU CAN TAP MY RESOURCES I'D BE HAPPY TO HELP WITH WORKSHOPS OR WORKING GROUPS WHEN NEEDED. >> I ALSO APPRECIATE THE OUTPOURING OF SUPPORT FOR YOUR FELLOW BOARD MEMBERS. THERE'S A LOT OF VERY KIND OF MELANCHOLY COMMENTS ABOUT THE FOUR OF YOU AND HOW MUCH YOU HAVE CONNECTED TO THE REST OF THE BOARD AND A LOT OF YOUR COLLEAGUES HAVE VERY NICE THINGS TO SAY SO MAKE SURE YOU CHECK THE CHAT. >> YEAH. I WANT TO DIS -- I ENJOYED GETTING TO KNOW YOU AND I WISH I WOULD HAVE MET THE NEW MEMBERS THAT JOINED AFTER COVID. MAYBE SOME DAY. I REEL APPRECIATE THE CONNECTIONS AND I THINK ALSO BEING SOMEONE WITH A SPINE OLE CORD INJURY AND AN EXTREMELY YOUNG INEXPERIENCED SCIENTIST, NOW I'M WORKING IN RESEARCH BUT COMING HERE AND I'M NOT A DOCTOR BUT PRETTY MUCH EVERY E-MAIL I'VE GOTTEN FROM NIH PEOPLE SAY Dr. WUDLICK AND IT'S A REALLY HUMBLING BUT ALSO BEING ABLE TO HAVE A EQUAL SEAT AT THE TABLE WITH ALL OF YOU, I THINK THAT HAS BEEN VERY EDUCATIONAL AND ALSO EDUCATIONAL IN THE WAYS OF LEARNING WHY THINGS ARE DONE A CERTAIN WAY AND COMING IN WITH A FRESH MIND OF CAN'T THEY GO THIS WAY. I STILL THINK THAT THEY COULD GO A CERTAIN WAY THAT WERE A LITTLE BIT BETTER. THAT IS MAYBE DOWN THE ROAD. I'M ENCOURAGED AND I WANT TO THANK EVERYONE FOR THAT TIME. >> THANK YOU. >> THERESA, DO YOU HAVE ANY COMMENTS? >> YEAH, I JUST WANT TO ECHO RALPH AND THANKING YOU ALL. THIS BOARD DOESN'T WORK IF WE DON'T HAVE GREAT MEMBERS WHO ARE WILLING TO BE PRESENT WHEN THEY ARE PRESENT AND PRESENT WHEN WE ARE VIRTUAL AS WELL. YOUR COMMENTS, YOUR PRESENTATIONS OVER THE YEARS HAVE BEEN INCREDIBLY IMPORTANT INTO HOUSE WE AS PROGRAM OFFICERS THINKING HOW WE CAN BE OF SERVICE TO YOU ALL. YOU ARE NOT DONE. WE ALWAYS NEED NEW MEMBERS. AND SO, WE VALUE THE RECOMMENDATIONS THAT YOU ALL MAKE SO IF THERE'S A VIEWPOINT THAT IS IMPORTANT FOR US TO HAVE ON THE BORED AND YOU KNOW A PERSON WHO WOULD FILL THAT WELL, PLEASE GIVE US NAMES. WE'LL TAKE IT FROM THERE BUT WE VERY MUCH VALUE THE RECOMMENDATIONS SO PLEASE, SEND US NAMES OF PEOPLE WHO MIGHT BE GOOD TO SERVE IN THE FUTURE BUT THANK YOU SO MUCH. AT SOME POINT, WORE JUST GETTING OUR MAIL BUT WE'RE CATCHING UP AND WE WILL SEND OUT YOUR CERTIFICATES. THERE'S AMOUNT OF MAIL TO GO THROUGH AT THIS POINT BUT THANK YOU. >> BRING US HOME, ERIC. >> I ALSO ALSO WOULD LIKE TO REITERATE TO BE AN ART I THINK ON BEHALF OF THE COLLEAGUES ON THE BOARD WE REALLY APPRECIATED YOUR INPUT THE LAST FOUR YEARS AND TWO YEARS AND TESTIFYING SHARING THIS TIME TODAY TO. THE LAST ITEM ON OUR AGENDA TODAY IS TO PLAN FOR THE NEXT MEETING. I HOPE ALL OF YOU REALIZE THE COMMENTS THAT YOU MAKE DURING THE COURSE 6 OF THE MEETING AND SUGGESTIONS AFTERWARDS HAVE A BIG IMPACT ON THE AGENDA GOING FORWARD. AND SO NOW I'D LIKE TO OPEN THE FLOOR UP TO ANYONE WHO HAS IDEAS THAT THEY WOULD LIKE TO PURSUE AT FURTHER MEETINGS. >> IT CAN BE EVEN FOLLOW-UP THAT THINGS HA HAPPENED I HA THAT HAPPENED IN T HE PREVIOUS MEETINGS. >> WELL, I THINK WE NEED CONTINUED DISCUSSION ON ABLEISM ACROSS THE BOARD. AND SCIENCE AND IN OTHER AREAS AND EVEN WITH OURSELVES AS COLLEAGUES. I THINK WE ALL NEED CONTINUED EDUCATION ABOUT WHAT THAT MEANS IN SCIENCE AND WHAT THAT MEANS TO WHAT WE'RE TRYING TO DO WITH REHABILITATION RESEARCH SO I REALLY THINK THAT CONTINUED DISCUSSION AROUND ABLEISM PERHAPS INVITING SOME SPECIFIC SPEAKERS THAT CAN ADDRESS VARIOUS TOPICS WE NEED TO CONTINUE TO LEARN ON THIS TOPICS AND I APPRECIATED ALL THE COMMENTS SO MUCH TODAY BY THE DEPARTING BOARD MEMBERS AND I THINK THAT WHAT THEY'VE LEARNED IN CONTRIBUTED IS ENORMOUS AND I THINK THAT WE NEED TO BUILD ON EVERYTHING THAT WE BROUGHT FORWARD TODAY AND THAT THEY BROUGHT FORWARD. CARE ISSUES, RESEARCH ISSUES ARE ALL INTRA MIXED AND SOMETIMES CLINICIANS AND RESEARCHERS CAN, AND I PUT MYSELF IN THIS CATEGORY, I'M NOT POINTING AT ANYONE OTHER THAN MYSELF, CAN BE SOME OF THE BIGGEST OFFENDERS OF ABLEISM IN OUR OWN RESEARCH AND I THINK WE NEED TO HAVE MORE DISCUSSION ABOUT THAT. >> THANK YOU. I JUST WANTED SAY REITERATE A LITTLE BIT OF WHAT STEPHANIE JUST SAID. I REALLY WAS IMPRESSED ABOUT THE CONCEPT ABOUT ABLEISM AND I THINK WE NEED TO CONTINUE TO FOCUS ON THAT AND I LOVED THE IDEA ABOUT US DOG DOING A WORKSHOP. I WAS GOING TO BRING UP, WE NEED TO CONTINUE TO HAVE FOCUS ON TELEHEALTH AND TELE THERAPIES AND I THINK IT'S AGAIN JUST GOING TO BE MORE AND MORE PROMINENT AND I THINK THERE'S A REAL NEED FOR RESEARCH TO LOOK AT EFFICACY AND COST EFFECTIVENESS AND OVER ALL SERVICE DELIVERY IN THAT AREA OF REHABILITATION AND THE FINAL THING I MENTION, AND THIS WAS STIMULATED BY WHAT ROB SAID IS THE CRISIS AND SERVICE DELIVERY. I TOTALLY AGREE. WE'RE HAVING A CRISIS OF TRYING TO GET MY SON HEALTHCARE PROVIDERS AND PERSONAL CARE CARE ATTENDANTS AND IT'S AN ISSUE AND I THINK WE NEED TO DO SOME FOCUS INTO THAT SERVICE DELIVERY OR SERVICE DELIVERY MODEL SO WE CAN BETTER SERVE OUR CITIZENS WITH DISABILITIES. >> THANK YOU. >> DON. >> HI, YOU KNOW, I WANTED TO JUST MAKE THE SUGGESTION THAT I WOULD LOVE IT HEAR MORE DISCUSSION ABOUT HOW WE MIGHT INCORPORATE STAKEHOLDER ENGAGEMENT OR PARTICIPATE ACTION RESEARCH AND ARE THERE STANDARDS AROUND THAT AND IS THAT EVEN PART OF APPLICATIONS I KNOW IT'S NOT PART OF A STANDARD RO1 APPLICATION HAVING DONE ONE RECENTLY SO, YOU KNOW, I JUST WONDER HOW WE CAN ENCOURAGE THAT LIVED EXPERIENCE PERSPECTIVE IN OUR ROW HABITATIO REHABILITATION RESEARCH AND THERE'S A LOT OF INFORMATION OUT THERE FROM THE REHAB COMMUNITY FROM OUTSIDE OF IT AND SOMETIMES I AM NOT SURE HOW IT FITS WITHIN THE MISSION OF NCMRR. I SUSPECT IT DOES I'M NOT SURE SURE IT GETS ENACTED SO THAT'S ONE TOPIC I'M INTERESTED IN. >> THAT'S GREAT. GOOD IDEA. >> THEY'VE EVEN TALKED ABOUT TRYING TO INCORPORATE THAT INTO PEER REVIEW BUT IT'S SNAG IS JUST BEEN A VERY AWKWARD DANCE SO FAR. >> ACTUALLY, YOU CAN FIT IN THE CONTEXT OF WHAT WE HEARD EARLIER TODAY IN TERMS OF YOU KNOW, HAVING DIVERSITY AS PART OF THE REVIEW CRITERIA. DIVERSITY OF MACHINES WOULD BE FANTASTIC AS PART OF OUR RESEARCH. >> SO, I'LL JUMP IN HERE. ON THE TWO RFAs THAT WE HAD THIS YEAR WITH DUE DATES IN MARCH, WE INCLUDED REQUIREMENTS FOR LIVED EXPERIENCE AND I WANT TO THANK JOE FOR HEADING THAT AND THE INPUT WE GOT FROM OUR FEDERAL COLLEAGUES AND THAT WAS A ONE-TIME RFA IT'S NOT IN THE STANDARD RO1 LANGUAGE AND SO THAT IS GOING TO HAVE TO BE A BIGGER CROSS NIH CONVERSATION AND Dr. BERNARD MENTIONED THE PEDPs PLANS FOR ENHANCING DIVERSITY AND THAT MIGHT BE ONE WAY NIH HAS THAT AND IT'S BEING DISCUSSED BUT YEAH, RIGHT NOW IT'S ON THE PI TO BRING IT AND TO TO SHOW THE VALUE. >> ANY OTHER THOUGHTS? >> POP UP AFTER OUR MEETING AND I ENCOURAGE YOU TO SEND A NOTE TO RALPH, THERESA AND MYSELF AND WE'LL MAKE SURE WE CONSIDER IT FOR THE NEXT MEETING. WITH THAT, WE'RE READY TO CLOSE OUT. I APPRECIATE EVERYONE'S COMMENTS OVER THE LAST COUPLE DAYS. I THINK WE HAVE SOME GREAT DISCUSSIONS AND LOTS OF GOOD PRESENTATIONS. RALPH, DO YOU HAVE ANY FINAL COMMENTS? >> I JUST WANT TO THANK YOU ALL AND BEING ACTIVE PARTICIPANTS. THERE'S ALSO ABOUT A DOZEN PEOPLE IN THE BACKGROUND WHO ARE MAKING SURE THAT THE ZOOM WORKS AND THE CLOSED CAPTIONS ARE HAPPENING AND THE NIH VIDEO CAST IS HAPPENING AND THE POWER POINTS ARE SHOWING UP AND THEY MAKE US LOOK AS GOOD AS WE CAN AND I THINK RALPH. I WANT TO THANK THEM AND THANK RALPH FOR BEING THE DESIGNATED FEDERAL OWE TIBLE AND KEEPING US LEGIT AND HIS WORK AS THE SECRETARY OF THIS BOARD. THANK YOU, RALPH. >> I WANT TO ADD IF ANYBODY OF YOU WANT TO RELIVE SOME OF THE EXPERIENCE, THE VIDEO CAST WILL BE AVAILABLE ABOUT A WEEK OR IF THE PARTS YOU WANT TO SHARE WITH YOUR COLLEAGUES OR SOME OF THE POWER POINTS BACK WITH YOUR COLLEAGUES, THAT'S WHAT WE'RE HERE FOR AND AGAIN I, I WANT TO ENCOURAGE YOU FOLKS, IT'S NOT JUST THE FIRST DAYS IN MAY AND THE FIRST DAYS IN DECEMBER WHEN WE EXIST. AS YOU BOARD YOUR PLANES TO HEAD BACK HOME IF YOU THINK OF OTHER IDEAS, OTHER WAYS WE CAN MAKE THE BOARD FUNCTION, WELL THE BOARD FUNCTIONS VERY WELL AS IT IS. OTHER THINGS YOU WANT TO BRING TO THE TABLE AND THE WAYS WE CAN IMPROVE DIALOGUE IN TERMS OF OUR ROLE TRYING TO PROMOTE AND SUPPORT REHAB RESEARCH ACROSS THE NIH, STAY IN TOUCH. CALL, WRITE. OK. AGAIN, I VERY MUCH APPRECIATE YOUR DEDICATION TO THIS AND THESE MEETINGS AND WE PLAN FOR THIS AND YOU FOLKS WERE REALLY ON NOT TASK THIS TIME AND WE HAD SOME GREAT DISCUSSIONS. SO, THANK YOU AGAIN. >> BYE, EVERYONE. SEE YOU SOON. HOPEFULLY IN-PERSON NEXT TIME.