THIS MORNING'S SESSION WE'RE GOING TO TALK ABOUT THE WORKING GROUP REPORTS AND THE DISCUSSION AROUND THAT. WE HAVE A LOT OF GENEROUS TIME, 9:00 TO 10:45, SO IF YOU AGREE, PATTY, I WAS THINKING THERE WOULD BE A BRIEF REPORT OUT TO THE GROUPS AND THEN WE'D HAVE A MORE DISCUSSION. >> CAN WE SAVE FIVE MINUTES AT THE END. >> YES, YES. WHO WOULD LIKE TO VOLUNTEER? OR I WILL VOLUNTEER. HOW ABOUT THE PUBLIC SERVICES WORKING GROUP? >> WELL, THANK YOU FOR THE OPPORTUNITY TO EXCEL. [LAUGHTER] >> SO FOR OUR WORKING GROUP, WE WERE DISCUSSING -- NOT THAT PAGE. I PRINTED OUT STUFF TO LOOK AT. 11 PAGES, THIS IS THE ONE. RIGHT. OUR CHARGE WAS MONITORING QUALITY AND APPROPRIATENESS OF THE NATIONAL LIBRARY OF MEDICINE PUBLIC SERVICE. GARY PUCKREIN, ALLESANDRO AND MYSELF AND THEN I WAS THE LEAD PERSON ON THE STAFF. AND THEY ASKED US TO TALK ABOUT THE QUALITY AND PERFORMANCE OF THE NLM PUBLIC FACING OFFERINGS, IDENTIFYING APPROPRIATENESS FOR CRITERIA. AND MOSTLY WE ENDED UP TALKING ABOUT WHAT THE LIBRARY CAN DO FOR ASPECTS OF THE SOCIAL DETERMINANTS OF DISEASE WHERE PEOPLE DON'T HAVE SUFFICIENT INFORMATION. SO USUALLY TALK ABOUT SOCIAL DETERMINANTS OF DISEASE LIKE A HUGE -- LIVE IN A NEIGHBORHOOD THAT'S A FOOD DESERT, IF YOU CAN'T GET HEALTHY FOOD, OR LACK OF FINANCES TO PAY FOR A DOCTOR OR YOUR MEDICINES OR YOU CAN'T GET TO THE HEALTH CARE FACILITY, ET CETERA. WE ALSO TALKED ABOUT THE INFORMATION THAT SOME PEOPLE LACK, OR TAKING CARE OF THEMSELVES, MAKING GOOD CHOICES. AND HOW DO THEY GET THIS INFORMATION NOW AND HOW MEDLINE PLUS MIGHT HELP WITH THOSE. WE DISCUSSED FEDERALLY QUALIFIED HEALTH CENTERS SPONSORED BY HRSA, WHAT INFORMATION DO THEIR PATIENTS NEED AND WHAT INFORMATION IS IN THE LIBRARY TO HELP PROVIDE INFORMATION, A FORMAT APPROPRIATE FOR THE AUDIENCE, YOU KNOW, WRITTEN AT PROPER EDUCATION LEVELS, THAT THE PATIENTS CAN UNDERSTAND. THAT'S THE SHORT OVERVIEW OF WHAT WE TALKED ABOUT. IS THAT WHAT YOU'RE LOOKING FOR FOR THIS? >> WAS THERE ANYTHING THAT -- SO THIS WAS REALLY AN EARLY MEETING. WERE THERE ANY CONCLUSIONS FOR WHERE YOU WERE GOING TO FOCUS DISCUSSIONS? >> REALLY, WHAT WE WERE TALKING ABOUT, WHAT IS A QUALITY THING, APPROPRIATE THINGS, WE SPENT A LOT OF TIME DISCUSSING ABOUT WHAT WE MEANT BY THOSE TERMS AND SOME THINGS THAT CAME UP WITH QUALITY. QUALITY IS A GOOD THING BUT WE SAID A QUALITY SERVICE IS A DISTINCTIVE SERVICE THAT OTHERS CANNOT, DO NOT OR WILL NOT PROVIDE. SO MEDLINE, WHEN IT FIRST STARTED OUT, THAT IS SOMETHING THAT NO ONE ELSE COULD DO, NATIONAL LIBRARY OF MEDICINE DID IT, AND THEN CONTINUES TO DO IT WELL. AND I WOULD ARGUE CERTAINLY BETTER THAN OTHERS HAVE DONE. NOW, IN THE FUTURE, WE DIDN'T TALK ABOUT THIS ASPECT OF IT, BUT INDUSTRY PEOPLES, YOU KNOW, THEY COME UP WITH NEW SOLUTIONS ALL THE TIME, AND WILL THEY COME UP WITH A BETTER MOUSE TRAP FOR MEDLINE PLUS, I DON'T KNOW, SO THAT'S SOMETHING THAT FOR THE FUTURE WILL THE NATIONAL LIBRARY OF MEDICINE STILL PRODUCE A QUALITY PRODUCT BUT WE CAN DO IT BETTER THAN ANYBODY ELSE CAN. AND WITH REGARDS TO APPROPRIATENESS, WE TALKED A LOT ABOUT INFORMATION APPROPRIATE FOR THE AUDIENCE. NATIONAL LIBRARY OF MEDICINE DOES A GREAT JOB AS RESEARCHERS, BOTH PHYSICIANS AND PHYSICIAN-SCIENTISTS AND SCIENTISTS, AND WITH MEDLINE PLUS AND THE GENOMIC PRODUCTS THAT ARE PRODUCED. AND THOSE ARE DEFINITELY APPROPRIATE FOR THOSE AUDIENCES BUT WHAT OTHER AUDIENCES THAT HAVE A NEED THAT'S NOT BEING MET BY THE REST OF SOCIETY, SUCH AS DISADVANTAGED PATIENTS FROM DISADVANTAGED COMMUNITIES, BACKWATER COMMUNITIES, THE TERM WAS BANISHED. WE TOOK AWAY THAT. YOU KNOW, IN THIS INDUSTRY PROVIDING SOLUTIONS FOR THOSE THAT ARE ADEQUATE FOR THEIR NEEDS. AND IF NOT, IS THIS SOMETHING THAT THE LIBRARY SHOULD DO AS A PUBLIC ASSET FOR THOSE POPULATIONS WHERE, YOU KNOW, INDUSTRY HAS NOT COME UP WITH A VIABLE SOLUTION FOR THOSE POPULATIONS. SO, I GUESS IF WE WERE GETTING TO AT THE END, WE WOULD ENCOURAGE THE LIBRARY TO LOOK AT DISADVANTAGED POPULATIONS, WHAT ARE THE SOLUTIONS INDUSTRY IS PROVIDING, IS THIS SOMETHING THE LIBRARY HAS ENOUGH EXPERTISE TO DO. THERE'S ALWAYS BUDGETARY CONCERNS. THE LIKE RATHER CAN WORK WITH ITS PARTNERS, THE REGIONAL LIBRARIES AROUND THE COUNTRY, WITH THESE HRSA FEDERALLY QUALIFIED CENTERS WHERE THE PATIENTS ARE GOING TO BE WHO MAY NOT BE GETTING THE KIND OF INFORMATION THAT THEY NEED. AND THEN THE LIBRARY WOULD BE AN INTERFACE WITH THOSE PARTNERS AND HELP PRODUCE PRODUCTS THAT ARE WRITTEN AT THE APPROPRIATE LEVEL, COULD PROVIDE EXPERTISE AND PERHAPS STORAGE AREA BUT NOT HAVE TO PRODUCE EVERY SINGLE PRODUCT. SO MEET THE POPULATION WHERE THEY ARE AND PROVIDE THE SERVICES THAT THEY NEED. >> THANK YOU VERY MUCH. I SEE A COUPLE OF INTERESTING THINGS THAT JUMP OUT AT ME HERE. THE QUALITY OF SERVICE THAT OTHERS DO NOT, CANNOT AND WILL NOT PROVIDE WHICH SORT OF PLAYS INTO THE INTRAMURAL RESEARCH BLUE RIBBON PANEL DISCUSSION AND ALSO THE PUBLIC/PRIVATE PARTNERSHIPS, ALL THE PRIVATE INDUSTRY. OKAY. HAVING JUMPED OFF THE CLIFF -- >> CAN I GET ONE PIECE OF CLARIFICATION. >> YES. >> PARDON ME? >> (INAUDIBLE). >> AM I HEARING THAT WAS THERE CONSENSUS IN THE GROUP THE ROLL OF THE LIBRARY SHRUB TO FILL IN WHERE THE HEALTH SERVICES SYSTEM FAILS? >> YES. THAT WAS THE CONSENSUS OF THE LIBRARY, FOR PUBLIC SERVICE, A BIG PART OF THE MISSION FROM OUR GROUP, WHERE INDUSTRY CAN'T OR WON'T, OR FOR SOME POPULATIONS THERE'S NOT A LOT OF DOLLARS ATTACHED TO THEM. YOU KNOW, THAT'S JUST SOMETHING THAT WE AS A PUBLIC RESOURCE SHOULD PROVIDE SERVICES FOR. >> OKAY. I'M JUST TRYING TO GET CLARIFICATION. WAS THERE ANY DISCUSSION ABOUT PUBLIC SERVICES FOR INDUSTRY? >> I DON'T RECALL ANY. >> WHAT DO YOU MEAN PUBLIC SERVICES FOR INDUSTRY? >> (INAUDIBLE) ONE OF THE THINGS THAT, MILITARY SERVICE, FOR EXAMPLE, THEY'RE BEING CHALLENGED, THE WHOLE ISSUE OF HEALTH LITERACY, BECOMING A PROBLEM. AND ABOUT 55% OF AMERICA'S HAVING GRADUATED FROM HIGH SCHOOL, SOUNDS LIKE A CRAZY NUMBER, BUT THAT'S THE NUMBER, HAVE NOT GRADUATED HIGH SCHOOL, AND HOW DO YOU PROVIDE HEALTH INFORMATION TO THAT POPULATION, I'M NOT SURE 8th GRADE LEVEL IS APPROPRIATE WAIT TO GET TO THEM. ECONOMIC REPERCUSSION, YOU HEARD THE SURGEON GENERAL TALK YESTERDAY ABOUT THE IMPACT ON THE ECONOMY, AND SO (INDISCERNIBLE) SO IT JUST SEEMS LOST THE LIBRARY COULD PLAY A SIGNIFICANT ROLE HERE. THE FEDERAL GOVERNMENT IS INTERACTING WITH THESE COMMUNITIES, BOTH IN TERMS OF THE LIBRARY DOING IT THROUGH LIBRARY NETWORKS, YOU'VE GOT THE CLINICS, PUBLIC HOUSING ALSO PROVIDES HEALTH CARE INTERESTING ENOUGH, SO THERE ARE OPPORTUNITIES TO PARTNER WITH THOSE WHO ARE TOUCHING THEIR LIVES, BUT IF HAD YOU TO FIND SOME UNIQUE TOOLS AND WAYS TO DO IT, THE "LOS ANGELES TIMES," WHAT THE DISCUSSION WAS HEARING THIS VERY SIGNIFICANT POPULATION THAT IS BEING UNDERSERVED WITH HEALTH INFORMATION, THE LIBRARY HAS THAT INFORMATION, HOW DO YOU PACKAGE IT AND SO IT'S NOT GOING INTO THOSE COMMUNITIES BUT THERE ARE OTHERS WHO YOU CAN PARTNER WITH TO GET THEM. ON THE OTHER SIDE I'M GOING TO UNDERSTAND TWO THINGS. ONE, PHYSICIANS FIRST, THERE ARE PHYSICIANS OUT THERE, SOUNDS CRAZY BUT TRUE, PHYSICIANS WHO SERVE AFRICAN-AMERICAN COMMUNITIES, PHYSICIANS WHO SERVE HISPANIC AND ASIAN COMMUNITIES, THE CHALLENGE FOR THEM IS BECAUSE THEIR POPULATIONS HAVE NOT BEEN GETTING TRIALS, THE WAY IN WHICH THEY ACQUIRE EVIDENCE ABOUT NEW THERAPIES AND HOW THEY WORK IN THAT POPULATION IS REALLY IN THE CLINICAL SETTING. AND IN THE CLINICAL SETTING IT'S COMING THROUGH PEER-REVIEWED ARTICLES WHERE YOU FIND OUT THAT THIS MEDICATION DID NOT WORK OR YOU HAD TO USE IT THIS WAY OR THAT WAY. THE PROBLEM IS THAT SOMETIMES THAT INFORMATION IS BURIED, IN THOSE CLINICAL ARTICLES, AND IF YOU READ THE HEADLINE YOU'RE NOT GOING TO GET THAT INFORMATION SO THE DISCUSSION WAS COULD PubMed CREATE SOME FILTERS. AND SO THAT THE SURGEON THAT YOU'RE THINKING ABOUT DOING COULD YOU CREATE FILTERS THAT WOULD POP OUT THAT INFORMATION SO THAT THE POPULATIONS, THE PHYSICIANS AND CLINICIANS WHO WERE TREATING THOSE POPULATIONS HAVE ACCESS TO INFORMATION THAT THEY REALLY HAVE TO SEARCH FOR VERY, VERY HARD OR WORD OF MOUTH OR HOWEVER THEY ARE GETTING IT RIGHT NOW. SO THAT WOULD BE A TREMENDOUS SERVICE, I DON'T KNOW HOW IT COULD GET DONE BUT WOULD BE A TREMENDOUS SERVICE IF THE LIBRARY COULD GET THAT DONE. WE DID DISCUSS, WHAT I WOULD SAY, SO IF YOU LOOK AT THE LANDSCAPE PUBLIC MEDIA TOUCHING MINORITIES OF POPULATIONS, AFRICAN-AMERICANS, HISPANIC, ASIAN, ASIAN-AMERICANS WITH HEALTH INFORMATION THEY VIRTUALLY DON'T EXIST. FUNDAMENTALLY ARE NOT OUT THERE. I'M NOT SURE I CAN GIVE YOU AN ANSWER WHY. A LOT OF MINORITY MEDIA IS FOCUSED ON MUSIC AND ALL THAT STUFF, BUT WHEN IT COMES TO HEALTH CARE ITSELF THEY ARE JUST NOT OUT THERE, PERIOD. SO THERE'S A REAL NEED TO FIGURE OUT -- AND THIS PARTICULAR INSTANCE, I WOULD SAY IT'S ALSO TRUE FOR THE MIDDLE CLASS IN THOSE COMMUNITIES THAT THEY ARE NOT GETTING THE INFORMATION THAT THEY NEED IN AN ORGANIZED WAY, THEY ARE FINDING IT BUT NOT AN ORGANIZED WAY, NOBODY IS ACTUALLY DELIVERING THAT TO THEM. AND SO I THINK THERE'S SOME PARTNERSHIPS THAT OUGHT TO BE EXPLORED TO SORT THAT OUT. I SUSPECT INDUSTRY HAS TO COME TO YOU TO DO IT, BECAUSE I DON'T KNOW EXACTLY HOW YOU WOULD INITIATE IT, BUT THE POINT I'M MAKING IS THAT THERE IS HUGE VACANCY IN THE MARKETPLACE FOR INFORMATION THAT IS HELPING, YOU KNOW, THIS GROWING POPULATION UNDERSTAND HOW YOU MANAGE YOUR HEALTH. ONE OF THE THINGS I THOUGHT WAS GOING TO HAPPEN WHEN WE GOT THE NEW HEALTH CARE IS THAT IT WOULD BE CONSUMER FACING IN THE SENSE PEOPLE WOULD HAVE SIGN UP FOR IT AND NEED TO RECRUIT AND GET ALL THIS ADVERTISING AND GETTING NEW NUMBERS HASN'T REALLY HAPPENED, AND SO WHAT I'M ANTICIPATING IS THAT YOU HAVE THIS NEW CONSUMER BASE. I WANT TO SHOUT A COUPLE OF QUICK NUMBERS SO YOU UNDERSTAND IN PART WHY IT'S NOT HAPPENING. SO BEFORE THE NEW HEALTH CARE LAW, 48% OF AFRICAN-AMERICANS HAD NO HEALTH INSURANCE. 54% OF HISPANICS HAD NO HEALTH INSURANCE. SO IT WAS KIND OF NO MARKET, IF YOU WILL, TO DO ANYTHING WITH, RIGHT? AND SO THAT'S WHY YOU HAVE THIS INFORMATION, HUGE INFORMATION VOID OUT THERE, BECAUSE IT WASN'T REALLY A MARKETPLACE TO DO IT. THAT'S CHANGED, BUT THE MARKET HASN'T REALLY CHANGED WITH IT. I'M NOT EXACTLY SURE HOW THE LIBRARY PLAYS A ROLE HERE BUT SOMEBODY'S GOT TO PLAY A ROLE BECAUSE THERE IS THIS REALLY TREMENDOUS VACUUM. >> SO I'D LIKE TO COMMENT ON A COUPLE THINGS IF I CAN AND NOT TAKE US TOO FAR OFF, REVERT TO THE INDUSTRY. WE SERVE INDUSTRY IN MANY WAYS, GENOME DATABASE USED BY PHARMA, HEALTH CARE DELIVERY, DEVICE INDUSTRY WITH OUR ACCESS CODE ID, WE HAVE PUBLIC-FACING SERVICES THAT REACH THE PUBLIC BESIDES CITIZENS. BUT I'D LIKE TO SPEAK TO TWO THINGS; PERHAPS THIS GROUP COULD HELP. WE HAVE, FOR EXAMPLE, IF YOU WILL PRE-FORMATTED SEARCHES SPECIFICALLY FOR HEALTH DISPARITIES ON THE RESOURCE PAGE BUT IT DOESN'T MEAN PEOPLE ARE FINDING THEM. I SPOKE TO THE NIMHD TRAINEES AND WE HAVE AN EDITORIAL COMING OUT IN MEDICAL CARE TO ADVANCE PEOPLE'S UNDERSTANDING THAT THESE THINGS ARE THERE BUT WE NEED TO FIND OUT A WAY NOT TO HAVE PEOPLE FIND THEM THROUGH 7500 WEBSITES BUT GET TO THEM. SET UP A MY NCVI SEARCH WITH THE GUIDANCE OF AN NNLM LIBRARY COULD HELP A LOCAL PHYSICIAN GET QUICK SEARCHES MORE TARGETED TO HIS OR HER PRACTICE. WE NEED TO GET INFORMATION ABOUT THAT OUT. I WANT TO SPEAK SPECIFICALLY TO THE ISSUE OF UNDERSTANDING INFORMATION PROVISIONING, ESPECIALLY IN UNDERSERVED OR CLASSICALLY THOUGHT OF MINORITY COMMUNITIES AND TALK A LITTLE BIT ABOUT WHAT OUR EXTRAMURAL PROGRAMS IS DOING. WE CURRENTLY FUND TWO DIFFERENT INVESTIGATIONS, ONE IS A RESEARCHER LOOKING AT THE IMPACT OF CELEBRITY ENDORSEMENT ON THE CONSUMPTION OF HEALTHIER OR UNHEALTHFUL FOODS, AND THE OTHER IS SOME WORK THAT'S BEING DONE ON LOOKING AT ADVERTISEMENT OF FAST FOODS, WHICH IS A TELECOMMUNICATION, BUT THE BRIGHT GLOSSY SHINY COLORS AND BIG INFOMATION THAT COMES FROM A McDONALD'S OR BURGER KING WITH WHAT COMES OUT OF DAIRY PRODUCTS, SO WE'RE FINDING RESEARCH TO HELP US BETTER UNDERSTAND HOW TO DO THAT BUT WE RECOGNIZE THERE IS A GAP IN BOTH THE CONTENT OF MATERIAL THAT'S AVAILABLE TO ADDRESS THESE MORE TARGETED NEEDS, AND HELPING PEOPLE UNDERSTAND IT IS THERE WITH US, WITHIN OUR RESOURCES. SO I REALLY LIKE THIS IDEA OF THINKING ABOUT HOW WE PARTNER TO ADDRESS THESE AREAS, SO PARTNERING WITH PARTICULARLY FEDERALLY QUALIFIED HEALTH SYSTEMS, SOME NNLM OFFICES ARE ALREADY DOING THAT IN THEIR LOCAL COMMUNITIES. BUT PARTNERING IN WAYS THAT WE ACTUALLY UNDERSTAND WHAT IS THE HEALTH GOAL THAT THAT AGENCY IS TRYING TO REACH. AND HOW DOES THE LIBRARY SUPPORT THEM IN DOING IT. BECAUSE THAT'S REALLY WHERE I SEE OUR BIGGEST IMPACT COMING FROM. >> CARLOS, YOU HAVE A QUESTION? >> YES, I THINK THIS IS VERY EXCITING AND WE'RE GOING IN THE RIGHT DIRECTION. I WANT TO BRING -- OPEN UP THE CONVERSATION A LITTLE BIT BECAUSE I THINK TO THE EXTENT THAT WE FOCUS ON INDIVIDUAL BEHAVIOR, WE'RE MISSING THE POINT BECAUSE THESE COMMUNITIES ARE RIDDLED WITH DISEASE, IN PART BECAUSE OF POVERTY AND IN PART FROM STRUCTURAL ISSUES THAT ARE NOT REALLY ADDRESSED IN AN INDIVIDUAL BASIS AND YOU CAN HAVE A QUALIFIED COMMUNITY HEALTH CENTER BUT THAT'S NOT GOING SUFFICIENT. THERE ARE POLICIES, THINGS PEOPLE CAN DO AT THE POLICY LEVEL TO CHANGE. IF YOU DEVELOP OPPORTUNITIES TO HAVE PLACES WHERE YOU CAN EXERCISE SAFELY, IT MAKES SENSE THEN TO REALLY HAVE COUNSELING RELATED TO PHYSICAL ACTIVITY. BUT IF THERE ARE NO OPPORTUNITIES TO BE ACTIVE, IT'S ABSURD TO PUSH THAT HARDER. SO I DON'T KNOW TO WHAT EXTENT THE LIBRARY IS CONSUMED BY POLICYMAKERS OR PEOPLE WHO ARE ACTUALLY MAKING DECISIONS HOW DO WE BUILD A PARK, HOW DO WE CHANGE THE ENVIRONMENTS OR HAVE BICYCLES IN THIS AREA. WHAT ARE THE PIECES AND ENVIRONMENTAL POLICIES AND PIECES THAT MAKE SENSE, AND HOW DO WE CONNECT TO THEM IN A WAY -- WE MIGHT HAVE IT BECAUSE WE HAVE PUBLIC HEALTH AND WE HAVE, YOU KNOW, WE HAVE THE LITERATURE IS VERY EXTENSIVE, BUT THE ACTUAL ABILITY FOR PEOPLE WHO ARE PUTTING TOGETHER ONE PAGE, WHAT IS IT WE NEED DO AND WHAT IS THE EVIDENCE, WE HAVE ONE-PAGERS FOR PHYSICAL ACTIVITY, ONE-PAGERS FOR HEALTHY EATING, BUT WE DON'T HAVE -- I DON'T KNOW IF WE HAVE ONE-PAGERS FOR BUILT ENVIRONMENT OR EACH AREA. I MEAN, HUD NOW HAS A NEW POLICY WHERE THEY ARE TRYING TO RESTRICT SMOKING IN PUBLIC PLACES, AND THAT SOUNDS ALL WELL AND GOOD BUT WHAT ARE SMOKERS GOING TO DO, HOW ARE THEY GOING TO GET HELP, WHERE IS THAT CONNECTION? SO I THINK THAT'S AN AREA THAT FROM A PUBLIC PERSPECTVE NEEDS TO BE ADDRESSED, AND SORT OF THE ELEPHANT IN THE ROOM. YOU CAN BLAME WHO YOU WANT TO, POPULATIONS, STRUCTURALLY DESIGNED TO BE SEGREGATED AND TO BE POOR, WHAT CAN WE DO IN TERMS OF THE INFORMATION THAT WE DO KNOW RELATED TO GETTING THAT TO THE PEOPLE WHO CAN POTENTIALLY MAKE CHANGES IN THE ENVIRONMENT. I MEAN, I CAN FOCUS ON SAN ANTONIO WHERE IT'S AN EARLY GRANT FROM THE CITY SEEKS TO CHANGE THE WALKING PATHS AND BICYCLES AND REALLY GET TO THE COMMUNITIES OPENING, OPENING SCHOOLS AFTER HOURS SO PEOPLE CAN GO WALKING THERE. THOSE ARE THINGS THAT ARE REAL AND POTENTIALLY EFFECTIVE. I MEAN, OUR HEALTH COMMISSIONER WAS SORT OF POINTING TO AN INCREASE IN SOLAR CONSUMPTION, INCREASE IN PHYSICAL ACTIVITY, AND WE TALK ABOUT OBESITY, WE TALK ABOUT IT, BUT TO THE EXTENT WE'RE TALKING AS INDIVIDUALS, INDIVIDUAL BEHAVIOR, WE'RE BLAMING THE VICTIM, FROM OUR PERSPECTIVE, AND WE NEED TO WIDEN THAT CONVERSATION. >> I CAN ADD SOMETHING? >> YES. >> YEAH, AND SO I RESONATE WITH SO MUCH OF WHAT YOU'RE SAYING, WHAT YOU BOTH SAID, AND ONE OF THE MOST PROFOUND EXPERIENCES THAT I HAD A FEW YEARS AGO WITH DESPITE THE FACT THAT I DO WORK WITH LATINO COMMUNITIES, BUT I HAD THE OPPORTUNITY TO STAFF -- HELP STAFF AN IOM CONSENSUS STUDY, COMMUNITIES IN ACTION, PATHWAY TO HEALTH EQUITY. AND SO THINKING -- I THINK SO MUCH THINKING ABOUT THAT COMMUNITY, THAT COMMUNITY LEVEL, THE COMMUNITY LEVEL INFORMATION NEEDS, BUT I WAS ALSO THINKING ABOUT IT IN RELATIONSHIP TO ONE OF THE STRATEGIC PLANNING GROUPS THAT BOTH DAN WAS ON AND JILL AND I WERE ALL IN THE SAME GROUP. AND ONE OF THE THINGS THAT BECOMES VERY CLEAR WHEN YOU LOOK AT THE LITERATURE AND YOU LOOK AT SOCIAL DETERMINANTS OF HEALTH, IT'S JUST LIKE EDUCATION TRUMPS EVERYTHING. SO ONE OF THE THINGS THAT WE -- IT'S SO CLOSELY TIED TO HEALTH AND EVERYTHING ELSE AROUND IT. AND ONE OF THE THINGS THAT OUR GROUP EMPHASIZED IS WE REALLY THOUGHT THAT THERE NEEDED TO BE THINKING ABOUT, YOU KNOW, TARGETS THAT REALLY FOCUSING ON KIDS IN PRIMARY SCHOOL AND JUST GETTING, YOU KNOW, JUST THINKING ABOUT WHAT TYPE OF EDUCATIONAL EFFORTS, WHAT MATERIALS COULD BE REPURPOSED FOR THIS GROUP BECAUSE SO MUCH OF WHAT ENDS UP HAPPENING TO YOU IN YOUR LIFE ENDS UP -- OF ENDS UP BEING KIND OF IMPRINTED BY THE TIME YOU'RE IN THIRD GRADE, AND I'M NOT SURE THAT WE'RE FOCUSING ENOUGH, YOU KNOW, ON THE YOUTH AND THESE COMMUNITIES, REALLY, YOU KNOW, GETTING THEM -- YOU KNOW, REALLY GETTING THEM THE EDUCATION THAT THEY NEED AND I THINK LOOKING AT EVERYTHING, LOOKING AT WHO GOES TO JAIL DOWN THE ROAD AND WHO DOESN'T DO THIS, EDUCATION IS SUCH A PRIMARY DRIVER. SO I THINK WE NEED TO LOOK AT THE YOUNG GROUP AND SEE CAN WE DO SOMETHING MORE FOR THEM. >> SO WHAT DO YOU THINK THE LIBRARY'S PATHWAY FOR DOING THAT MIGHT BE? HAVE YOU THOUGHT ABOUT THAT? >> WELL, I THINK IT'S INTERSECTORIAL WITH EDUCATION, FOR SURE. I'M NOT SURE WHAT ALL -- YOU KNOW, WHAT ALL THE PATHWAYS WOULD BE BUT WE WERE VERY LUCKY TO HAVE OUR -- OUR REPORT TEAM CAME FROM DIFFERENT SECTORS, AND PART OF THE FUN WAS BRINGING THOSE THINGS TOGETHER. AND SO I GUESS IT DOES END UP BEING -- IT'S NOT SOMETHING THAT THE LIBRARY NECESSARILY DOES ALONE. I THINK IT HAS TO BE A PARTNERSHIP WITH EDUCATION. I >> ONE OF THE OPPORTUNITIES WE HAVE IS PARTNER WITH OTHER INSTITUTES AT NIH, A NATURAL PARTNER IS NICHD. THROUGH THEM WE WORK TOWARDS A BROADER PARTNERSHIP. BUT I THINK THIS IDEA OF SEEING THE COMMUNITY AS CUSTOMERS, REALLY INTERESTING AND NOVEL PIECE WE WOULD ACTUALLY DO SOME THINGS WITH. DO YOU HAVE SOME THOUGHTS WITH THAT, POLICY REALM. >> WELL, I THINK YOU'RE TRYING TO PARTNER WITH OTHER ORGANIZATIONS, YOU HAVE KIND OF A CLEAR MISSION AND MANDATE TO DO THESE KIND OF THINGS. WHAT IS THE ROLE OF THE LIBRARY AND CREATOR OF EDUCATIONAL MODULES FOR CONSUMER EDUCATION, WHERE DOES THAT BEGIN. NICHD CREATED FOR MINORITY HEALTH, ANOTHER ONE. AND I THINK THAT PROBABLY IS AN EFFECTIVE MECHANISM FOR GETTING THE KIND OF ENGAGEMENT WITH THE COMMUNITIES AT THE RIGHT TIME AND RIGHT PLACE AND THINKING WHAT WE CAN DO, BOTH COLLECTING THE KINDS OF MATERIALS THAT WOULD BE INFORMATIVE OF THOSE WORKS AND LOOKING AT NEW WAYS OF DISTRIBUTING THINGS. >> I'M NOT SURE WHAT KIDS IN THE AGE GROUP USE. >> THE L.A. TIMES FOR GETTING INFORMATION OUT. >> NEW PubMed GAMES. >> IT IS BOLD. IT IS BOLD. >> LISA AND WE NEED TO MOVE ON BECAUSE WE WON'T TOUCH THE OTHER OF THE SECTIONS. >> I WANT TO CONTRIBUTE, THE WAYS -- THE NOTION OF THE LIBRARY PROVIDING UNIQUE CONTRIBUTIONS TO THESE DISCUSSIONS, VERY IMPORTANT DISCUSSIONS YOU'RE RAISING. ONE OF THE RESOURCES THE LIBRARY HAS THAT'S VERY UNIQUE IS SUPPORTING -- A RESOURCE CALLED HSR PROJECTS IN PROGRESS, WHICH BASICALLY SAYS THAT WE AT THE LINE RATHER THAN DON'T OWN THE ISSUE -- DON'T OWN THE ABILITY OF TOOLS TO GO OUT AND EFFECT THE POLICIES WITH THE POLICYMAKERS, EXCEPT FROM THE PERSPECTIVE OF MAKING INFORMATION AVAILABLE. THE INFORMATION WE MAKE AVAILABLE TO THEM IS THE INVESTMENTS OF THE FUNDERS, THE VARIETY OF FUNDERS, HUGE VARIETY OF FUNDERS WHO ARE ENGAGED IN THIS VERY BROAD CONSTRUCT HOW SERVICES RESEARCH, WHICH WE BROADENED OVER TIME TO MAKE SURE IT DOES INCLUDE HOUSING, EDUCATION, OTHER THINGS LIKE THAT. IT COULD BE BROADER. BUT THAT RESOURCE WHICH HAS BEEN IN EXISTENCE SINCE THE LATE '90s IS REALLY AN EXCELLENT WAY TO LOOK AT TRENDS AND GAPS. IN FACT THE PARTNER AT THE CDC THAT'S MOST INVOLVED IN LOOKING AT SETTING THE GUIDELINES FOR COMMUNITY PRACTICE TRYING TO FIGURE OUT WHERE THE EVIDENCE IS FOR DATA-DRIVEN PUBLIC HEALTH POLICY HAS USED HSR TO IDENTIFY THE GAPS IN RESEARCH KNOWLEDGE SO THAT WE COULD THEN TURN AROUND TO ITS FUNDERS, FRIENDS, ORGANIZATIONS AND OTHER FOUNDATIONS. IT'S ONE OF THESE THINGS WHERE REALLY IT TAKES A VILLAGE TO GET THINGS GOING. I MEAN, THINK A LOT OF OUR SWEET SPOT IS ABOUT GETTING -- MAKING INFORMATION AVAILABLE, WE WOULD IMPROVE AND WELCOME YOUR ADVICE HOW TO IMPROVE THAT, THE IDEA OF GETTING PEOPLE TO SEE WHAT -- TO SHINE A LOT ON WHAT'S OTHERWISE UNSEEN, THE RESEARCH GOING ON FROM THE MOMENT IT'S FUNDED UNTIL PUBLISHED, A PLACE IT COULD MAKE A DIFFERENCE, BUT WE COULD NO DOUBT DO MUCH BETTER SO WE WELCOME YOUR ASSISTANCE WITH THAT. >> OKAY. GOING THAT WAY WE'LL COVER EVERYBODY AND HAVE MORE COLLECTIVE DISCUSSION AT THE END. SO MAYBE COLLECTIONS NEXT? >> ALL RIGHT. I PUT A HANDOUT NEXT TO YOUR PLACE. OUR PRIMARY RESPONSIBILITY IS THE BOARD'S ROLE IN COLLECTIONS. AND WE THEN HAD SOME OTHER IDEAS THAT WE'LL GET TO. BUT THE LAST BOARD OF REGENTS COLLECTION POLICY, THEY HAVE DONE REALLY CREATIVE THINGS WITH IN THE COLLECTION MANUAL, BECAUSE THE POLICY HAS SOME FLEXIBILITY. BUT THE POLICY HAS BEEN OVERCOME BY TIME. WE DID IT IN 92, THE INTERNET HARDLY EXISTED, AND WE WERE STILL USING GOPHERS TO GET FROM ONE PLACE TO ANOTHER. AND IT'S JUST -- YOU KNOW, THINGS HAVE CHANGED. YOU WILL NOTE THAT THERE'S A SET OF DEFINITIONS ON THE BACK AND LITERATURE IS HIGHLIGHTED. WE TRIED TO MAKE THE DEFINITION OF LITERATURE BROADER, BUT LITERATURE IS NOT A TERM OF ART IN TODAY'S WORLD. WE NEED TO COME UP WITH SOMETHING BETTER. I SPENT TIME WITH A THESAURUS AND COULDN'T FIND ANYTHING SO I INVITE YOUR CREATIVITY. ALSO HIGHLIGHTED A HUGE INCONSISTENCY IN THE FIFTH PARAGRAPH OF THE POLICY, COVERAGE OF THE SCHOLARLY BIOMEDICAL LITERATURE SHOULD BE COMPREHENSIVE. THAT MEANS WE'VE GOT EVERYTHING. AND SCHOLARLY IS DEFINED ON THE BACK AGAIN, RESULTING FROM PROFESSIONAL STUDY OR RESEARCH. IT SAYS NOTHING ABOUT RESPONSIBILITY, ETHICS, PROFESSIONALISM. IF SCHOLARS ARE FOOLISH NUMBER TO PUBLISH IN THROWAWAYS WE NOW HAVE AN OBLIGATION TO COLLECT THROWAWAYS. WE CAN'T AFFORD TO COLLECT ALL THE THROWAWAYS, AND THAT DOESN'T EVEN GET TO THE MODERN ELECTRONIC JOURNALS THAT ARE PAY TO PLAY. IT'S AN AREA WHERE WE HAVE SOME SERIOUS WORK AS A BOARD TO DO. AND WE HAVE TO TAKE COUNTENANCE OF WHAT THE INTERNET AND ELECTRONIC PUBLISHING HAS DONE IN SHAPING OUR POLICY. WHICH ALSO INCLUDES THINGS LIKE FORMAT. THE OTHER THREE AREAS THAT WE THINK WE NEED TO WORK ON ARE THE INFORMATION EXCHANGE TECHNOLOGIES THAT ARE OUT THERE HAVE CREATED NOT ONLY COLLECTION POLICY PROBLEMS BUT SECONDARY PROBLEMS IN THE LIBRARY FOR INDEXING AND ACCESS. AND WE ARE TRYING TO KEEP THE INDEX JOURNALS TO A MANAGEABLE LIST. THERE IS HUGE PUBLIC AND POLITICAL PRESSURE TO GET JOURNALS ON AN INDEXED LIST THAT GIVES A CREDIBILITY TO YOUR JOURNAL. BUT WE CAN'T INDEX EVERYTHING. AND WE OUGHT NOT INDEX EVERYTHING BECAUSE WE HAVE THIS BELIEF THAT WHAT WE PUT OUT OUGHT TO BE TRUSTABLE, AND NOT EVERYTHING IS TRUSTABLE. THE GROUP THINKS THAT IT WOULD BE BEST IF THE BOARD GAVE THE TECHNICAL SERVICES PEOPLE SOME TOP COVER ON BROAD POLICY FOR INDEXING, SO THAT IT WASN'T SIMPLY A FEDERAL BUREAUCRATIC DECISION, WAS IN FACT AN INTENTIONAL STRATEGIC PLAN ISSUE. WE HAVE THREE NATIONAL LIBRARIES, WE ALREADY HAVE COLLABORATIVE GROUP RELATIONSHIPS. THE LIBRARY OF CONGRESS AS A DEPOSITORY LIBRARY EARLY IN THE 20th CENTURY BEGAN TO DUMP ALL THE MEDICAL STUFF DOWN THE HILL TO THE OLD RED BRICK AND NLM BECAME A QUASI-DEPOSITORY LIBRARY FOR MEDICAL STUFF. WE HAVE ARTICULATED THAT? A REAL COLLABORATIVE AGREEMENT NOW. WE HAVE SIMILAR COLLABORATIVE AGREEMENT ON COMPARATIVE MEDICINE STUFF WITH THE NATIONAL AGRICULTURE LIBRARY. IF IT'S ABOUT THE ANIMAL THAT LIVES IN BELKSVILLE, IF IT'S ABOUT THE PEOPLE, THE TREATERS OF THE ANIMAL OR THE VICTIMS OF THE ANIMAL'S DISEASE, IT LIVES HERE. AND YOU DON'T KNOW THAT UNLESS YOU ARE IN TECHNICAL SERVICES AT THE NATIONAL LIBRARY OF MEDICINE OR NATIONAL AGRICULTURE LIBRARY SO PEOPLE GO TO THE WRONG PLACE FOR INFORMATION. THIS LEADS US INTO THE THIRD PROBLEM. WE HAVE A PHENOMENAL NUMBER OF DATABASES, OF ALL KINDS OF INFORMATION. BUT ACCESS TO THEM IS A CHALLENGE. CORTADA, ALL THE FACTS, THE HISTORY OF THE UNITED STATES SINCE THE 1870s, SAID WE HAVE COME INTO A GOOGLE ERA. NOW, HE DATES IT BEFORE GOOGLE EXISTS BUT THAT'S, YOU KNOW, THE CHALLENGE OF HISTORY AND WRITING. BUT IT'S CHANGED THE WAY MILLENNIALS AND SUBSEQUENT GENERATIONS ACQUIRE INFORMATION. HIS ANALOGY IS WE ALL LEARNED TO START WITH THE TABLE OF CONTENTS, FIND THE SECTION, AND READ IT. AND YOU GOT THE INFORMATION YOU WERE LOOKING FOR. GOOGLE IS TEACHING PEOPLE TO ESSENTIALLY START WITH THE INDEX. I WANT A FACT. I WANT TO KNOW SOMETHING, AND I GO THERE. THAT LEADS THEM TO A FUNNY KIND PROFESSIONALLY EDUCATED COMMUNITIES. (TECHNICAL DIFFICULTIES, PLEASE STAND BY) ... ... ... THAT ON THE TABLE AL SO, ONE OF THE THINGS WE DO THAT OTHER LIBRARIES DON'T DO IS PRESERVE, AND IF YOU WILL HAVE AN ASPIRATIONAL VIEW OF PERPETUAL ACCESS WE MAY NOT KNOW WHO IN 2050 IS GOING TO ACTUALLY WANT TO READ THAT JOURNAL, BUT BY GOD WE'VE GOT THE CITATION AND FULL TEXT AND PMC IF THEY WANT IT. THERE'S A LOT OF THINGS TIED TO THAT. WE DON'T HAVE TO GO INTO THOSE TODAY. I WANT TO MAKE SURE THE SUBCOMMITTEE IS THINKING BROADLY, COLLECTION FOR PURPOSE AND NOT FOR ACCESS. >> WE SPENT 15 MINUTES ON THE FACT OTHER LIBRARIES EVEN ACADEMIC LIBRARIES ARE CULLING THEIR RETROSPECTIVE COLLECTIONS, AND WE HAVE MADE ATTEMPTS TO COLLABORATE TO CONSERVE THINGS BUT THEY ARE NOT FUNDED FOR THAT PURPOSE. EVEN THE ONES THAT STARTED WITH IT HAD TO BAIL OUT. THEY I WAS LOOKING AT SEMINAL DOCUMENTS, AUTHORIZING LEGISLATION, TO ACQUIRE AND PRESERVE BOOKS, MATERIALS AND OTHER SORTS OF THINGS. WE TALK ABOUT CONNECTING, HOW DO WE DECIDE WHAT TO DO? >> I WANT TO SECOND DALE AND PATTY ON THE PRESERVATION ISSUE. AND I THINK EVEN THOUGH THE ACTUAL CRISIS POINT MAY NOT BE IMMINENT, WE NEED TO BE THINKING ABOUT THAT BECAUSE I CAN TELL YOU THAT NLM MAY NOT SEE ITS ROLE AS PRESERVING THE ENTIRETY OF THE BIOLITERATURE BUT A GREAT PORTION OF YOUR CONSTITUENCY SEES THAT AS YOUR ROLE. I DO SEE THAT AS OUR ROLE. THAT'S OUR LEGISLATION THAT SAYS WE WILL DO THIS. YOU'RE GOING TO COME TO A POINT WHERE THERE'S A CONFLICT OF RESOURCES BETWEEN CONTINUING TO COLLECT OR COLLECTING NEW THINGS, PRESERVING WHAT YOU HAVE. YOU DON'T HAVE A FALLBACK POSITIONING ESSENTIALLY ON THE PRESERVATION BECAUSE ALL OF US OUT IN THE FIELD -- IT'S ELECTRONIC, YOU DON'T NEED TO KEEP THAT GRANT. WELL, NLM HAS IT. SO THERE'S A VERY BIG EXPECTATION OF YOUR CONSTITUENCY THAT HAS TO BE TAKEN INTO ACCOUNT WHEN YOU'RE PLANNING AROUND THAT. >> AND WE HAVE TO THINK ABOUT OUR DIFFERENCE -- OUR DIFFERENT PRODUCTS IN WAYS MOST APPROPRIATE. SO WE RARELY GET MULTIPLE VERSIONS OF THE SAME ARTICLE. OCCASIONALLY, BUT ONE VERSION OF THE ARTICLE AND IT DOESN'T CHANGE. WE OFTEN GET MULTIPLE VERSIONS OF THE SAME DATA. AND WE HAVE TO MAINTAIN VERSIONING AND SOMETIMES WE HAVE TO PULL IT ALL THE WAY BACK TO THE ORIGINAL. AND SO THIS DISCUSSION ABOUT COLLECTIONS HAS GOT TO REALLY -- IT SPANS THE WHOLE LIBRARY IN OUR RESOURCES AND COMMITMENT TO TECHNOLOGIC INVESTMENT AND COMMITMENT TO FINDABILITY OF THESE THINGS. >> GARY? >> THE LIBRARY COLLECTS CLINICAL TRIALS DATA FROM THE PHARMACEUTICAL COMPANY. AND THE REASON WHY I'M RAISING THIS IS BECAUSE YOU'RE TALKING ABOUT HOW TO GET QUICK LEARNING AUDACIOUSLY QUICK, SO THE COMPANY SIGNED AN AGREEMENT A COUPLE YEARS AGO WITH THE NATIONAL ACADEMY OF MEDICINE THAT THEY WERE GOING TO MAKE AVAILABLE THEIR CLINICAL TRIAL DATA. THEY WERE GOING TO HOLD IT FOR A PERIOD AND THEN MAYBE GIVE PUBLIC ACCESS TO IT. IF THAT DATA COULD BE AGGREGATED AND SOME SEARCH FUNCTIONS PUT ON THAT, THAT WOULD BE JUST SPECTACULAR. AND I'M RAISING THE QUESTION, ARE YOU DOING THAT? >> I'M GOING TO ASK JIM TO SPEAK TO THAT. >> YEAH, IT'S A MIX, AS YOU MIGHT EXPECT. THERE'S SOME TRIAL DATA THAT'S GONE INTO THINGS LIKE THE GAP. THERE IS A NUMBER OF GROUPS OUTSIDE NLM WHO ARE INITIATING SYSTEMS TO POINT TO VARIOUS TRIALS, THE DRUG COMPANIES, BUT THOSE ARE -- THE ASPIRATION IS TO COMPUTE ACROSS THE PLATFORM. I THINK AT THIS POINT WHAT YOU GET IS A POINTER THAT SAYS GO ASK THESE PEOPLE TO LET YOU USE THEIR DATA. THERE ISN'T A REALLY CROSS-PLATFORM TYPE OF THING. I WOULD ADD TO THIS. >> I DIDN'T GIVE YOU PERMISSION. [LAUGHTER] >> WELL, YOU RAISED THE POINT WE'RE NOT IN CRISIS YET. WITH ARCHIVING ALL THE BIOMEDICAL LITERATURE, BUT WE'RE WAY ALREADY PAST THE CRISIS OF ARCHIVING ALL THE DATA BECAUSE IT'S MUCH FASTER TO GENERATE THE DATA THAN IT IS TO WRITE A PAPER PEER REVIEWED ABOUT IT, AND THERE IS NO THOUGHT ABOUT ARCHIVING THE DATA, THAT YOU'RE GOING TO GO BACK TO IT AND MAKE MORE DISCOVERIES, SO THIS IS WHY YOU NEED TO SORT OF KEEP IT AROUND. AND WE'RE ALREADY IN TERMS OF COST ALREADY WELL PAST THAT. SO WHAT IS THE LIBRARY'S RESPONSIBILITY TO COLLECT AND HOLD FOREVER VERSUS THE THINGS THAT MAY DISAPPEAR BECAUSE THEY ARE ACTUALLY NOT ARCHIVED. I THINK THERE'S A MAJOR ISSUE. (INAUDIBLE) BUT CERTAINLY IF DATA IS A BIG DEAL, IT'S WAY BEYOND NLM BUDGET. >> WE HAVE A LOT OF SUMMARY LEVEL INDUSTRY DATA, WE DON'T DO ENOUGH CONNECTING TO THE MORE DETAILED INDIVIDUAL PARTICIPANT, THE IDENTIFIED DATA THAT MIGHT BE HELD IN OTHER REPOSITORIES Q.THE R E POSITORY. >> THE LIBRARY, BECAUSE IT'S A NON-COMPETITIVE PARTNER COULD GAIN THE TRUST OF INDUSTRY TO DO THAT. [LAUGHTER] >> GARY, I WOULD SAY -- IT'S NOT BEEN MY EXPERIENCE YET BUT THE LIBRARY -- THE LIBRARY DOES ENJOY SORT OF AN UBER GOVERNMENTAL ARM AROUND IT. WE DO APPRECIATE THAT. >> DAN? >> AS IF THERE WAS A TENSION BETWEEN PRESERVATION AND ACCESS, WHICH SUGGESTION THERE'S A USE CASE WHERE YOU PRESERVE FOR THE PURPOSE OF MAKING THINGS INACCESSIBLE. SO I THINK THE POLICY OUGHT TO JUST SIMPLY STATE THAT A COMMITMENT THAT EVERYTHING THAT'S PRESERVED NEEDS TO BE ACCESSIBLE AT SOME POINT. >> I HAVE TO TELL YOU, FORCING DISCUSSION ABOUT THAT, BECAUSE MAKING THINGS ACCESSIBLE IS A HUGE SUITE OF TOOLS THAT WE MIGHT HAVE A DIRECTORY LIST BUT THAT DOESN'T MAKE IT FINDABLE. THERE ARE A LOT OF PIECES. I GUESS I WOULD IMAGINE ON A USE CASE, BUT THE QUESTION IS HOW MUCH ACCESS TO WE PROMOTE. DOES PubMed PROMOTE ENGLISH LANGUAGE ACCESS WITHOUT NEEDING TO KNOW SPECIAL CODES OR STRATEGY, THAT'S EXPENSIVE TO PRODUCE. >> YOU NEED TO SUGGEST ACCESS IS A MONOLITHTIC SUITE OF METHODS BY WHICH YOU GET ACCESS. THERE'S THIS SPECTRUM OF ACCESSIBILITY, THINGS COULD BE OFFLINE, TAKES A WHILE TO GET THEM. BUT THIS ONE TAILING CASE OF WE OMIT BUT IT'S SAFE BECAUSE NO ONE WILL EVER ACCESS IT, UNFORTUNATELY THE TRUTH IS THEY USE THESE LIKE NASA DATA ARCHIVES, EVERYONE KNOWS THEY ARE THERE, NO ONE CAN USE IT. THIS LINE TO MAKE A COMMITMENT TO SOME FORM OF ACCESS TO EVERYTHING THAT'S IN THE COLLECTION OR TO AT LEAST HAVE A REASONABLE EXPLANATION WHY YOU WOULD DO SOMETHING OTHER THAN THAT. >> I WILL REMIND YOU WHEN WE MAKE ACCESS ACCESSIBLE THROUGH PubMed WE HAD A WHOLE WORKFORCE THAT SAID THAT WAS THE WRONG THING TO DO, THAT THEY WERE GOING TO BE OUR ACCESS POINT. AND SO THERE'S -- THERE WILL BE DISCUSSION. >> I WANT TO WRITE SOMETHING THAT WAS SAID ABOUT HAVING TIME AT THE NEXT BOARD MEETING, ALL OF US TO THINK ABOUT IS THIS THE FORUM YOU WANT TIME OR DO YOU WANT SOMETHING DIFFERENT? >> I DON'T KNOW THAT WE ARE READY FOR THE NEXT BOARD MEETING. BUT ONE OF THE NEXT THREE BOARD MEETINGS, AND YOU NEED TO TELL US WHICH ONE, IT IS OUR BELIEF THAT THE BOARD NEEDS TO UPDATE THIS POLICY, AND THAT WOULD BE AN ACTION ISSUE FOR WHICH THE WORKING GROUP AND THE OPERATIONS STAFF WILL HAVE TO KNOW IT'S COMING SO THAT WE CAN AT LEAST PROVIDE A DRAFT TO YOU IN ADVANCE SO THAT WE CAN DISCUSS WHAT WE WANT TO ADOPT. >> IT'S NOT A TRIVIAL THING. >> NO, MA'AM, NOT TRIVIAL AT ALL, PARTICULARLY SINCE AS WE MOVE INTO DATA COLLECTION WE ARE BLURRING THE DISTINCTION BETWEEN A LIBRARY AND AN ARCHIVE. OUR FOUNDING LEGISLATION DOES NOT SAY COLLECT LABORATORY NOTEBOOKS. THAT'S AN ARCHIVAL FUNCTION. AND WITH MODERN DATA SCIENCE IT IS AN IMPORTANT ARCHIVAL FUNCTION. BUT WE NEED TO DECIDE WHETHER, ONE, WE ARE CHARGED AND FUNDED. AND OTHERWISE RESOURCED TO DO THAT. AND WE CANNOT COMPREHENSIVELY COLLECT DATA THE WAY WE COMPREHENSIVELY LITERATURE WITHOUT A FUNDAMENTAL CHANGE IN THE NATURE OF THE BEAST. AND -- >> OKAY. SOUNDS LIKE YOU AS A GROUP NEED TO DO SOME -- >> WE'RE GOING TO NEED TO DO OFFLINE WORK AND ENGAGE THE BOARD A LITTLE BIT IN THIS, WHAT DOES DATA SCIENCE REQUIRE OF THE NATIONAL LIBRARY OF MEDICINE. AND THAT IS A SECOND QUESTION, BUT IT IS BY NO MEANS TRIVIAL. >> OKAY. >> I'LL BE GIVING THAT SUMMARY. ACTUALLY THE PREVIOUS DISCUSSION ADD LENGTH TO WHAT I'LL BE œSAYING. THE GROUP INVOLVED -- CHAIRED BY MILT AND INVOLVED MYSELF, GYM DESHLER, MATTHEW LIN, CLAY JOHNSTON, AND SO WE -- THE GROUP STARTED OUT BY HEARING UPDATES FROM MILT AND VALERIE AND OTHERS ON HOW THINGS WERE TO DATE, HIGH LEVEL, INTRAMURAL AND EXTRAMURAL PROGRAM. AND THEN WE MOVED FORWARD WITH A DISCUSSION ABOUT NEXT STEPS AND WHAT THIS GROUP COULD DO. ONE OF THE BIG THEMES OF OUR DISCUSSION WAS ON THE OPPORTUNITY TO ALIGN BOTH INTRAMURAL AND EXTRAMURAL RESEARCH PRIORITIES CALLED OUT IN THE STRATEGIC PLAN, FORESHADOWING FOR THE REPORT WE HEARD FROM THE BLUE RIBBON PANEL (INDISCERNIBLE). IN PARTICULAR ARE THERE SPECIFIC PLACES WE MIGHT WANT TO FOCUS ATTENTION WITH COMMUNICATIONS, ENGAGEMENT WITH COMMUNITY, WHEN IT CAME TO WHAT WE MIGHT CALL BLIND SPOTS OR GAPS GIVEN THE CURRENT PORTFOLIO AND PLANS. WITH THE THREE PILLARS OF THE STRATEGIC PLAN AND SUBGOALS CALLED OUT IN THE PLAN. AND MOST OF THE FOLKS, I MEAN THE FEELING I'VE PICKED UP TAKING NOTES, AND OTHERS THAT SENT ME NOTES, YES, WE COULD DO BETTER. INTERESTED TO HEAR THAT TO DATE THERE'S BEEN KIND OF AN ORGANIC PROCESS BY WHICH OUR FUNDING OPPORTUNITY ANNOUNCEMENTS, FOAs, WHICH WE ARE GENTLY INJECTING TERMINOLOGY FROM DATA SCIENCE INTO THE FOAs, FOR EXAMPLE, BUT CERTAINLY OUR CALLS -- WE HAVE NOT FOLLOWING THE THREE CODES OF THE PLAN. SINGLE PILLARS, IN TERMS OF HOW THEY ARE SCOPED AND COMMUNICATED TO THE COMMUNITY. WE ENDED UP -- SO THE BEST WE CAME UP WITH, YOU KNOW, WHAT MIGHT WE DO BETTER IN THINKING MORE MINDFULLY ABOUT THE COMMUNICATION AND OUR CALLS. WHAT WE MIGHT DO IN TERMS OF AWARENESS AND ENGAGEMENT. ONE COMMENT THAT WAS INTERESTING DURING THE MEETING MILTON SAID THIS, AND ALSO DEFINITIONS. WE DON'T GET MANY A.I. APPLICATIONS, DON'T FUND CORE A.I.s, HUGE VENN DIAGRAM BETWEEN DATA SCIENCE AND WHAT OTHERS CALL ARTIFICIAL INTELLIGENCE, AND THE REACTION WE GOT FROM SOME INTRAMURAL PEOPLE WERE WE DO A.I., WE GOT A LONG JUICY LIST OF A.I. GOING ON IN TERMS OF RESEARCH TOPICS, USE OF DEEP LEARNING, A VARIETY OF APPLICATIONS, NATURAL LANGUAGE AND IMAGING. BUT IT SEEMS AWARENESS, THERE'S TWO WAYS, RFIS CONSIDERED REACH OUT WITH QUESTIONS AND FRAMING OF GOALS IN TERMS OF STRATEGIC PLAN, WITH THE COMMUNITY, THERE WOULD BE WORKSHOPS AND EXPERTS ON SPECIFIC TOPICS, VALERIE AND I HAD A BACK-AND-FORTH, WORKSHOPS VERSUS NLM WORKSHOPS, THE NSF HAS TRADITION FROM MY WORKING WITH THE NSF A RICH ENGAGEMENT WITH THE COMMUNITY TO WORKSHOPS, KIND OF CURRENCY THAT -- AND THAT COULD BE DONE QUITE WELL WITH THE RIGHT KIND OF FRAMING AND SCOPE, SCOPING FOR ENGAGEMENT. THIS WAS GETTING TO THE QUESTION WE DON'T GET CERTAIN KINDS OF APPLICANTS ANYMORE OR LED TO DISCUSSION HOW MODERN A.I. WAS LITERALLY FUNDED BY THE NLM, WORKSHOPS AND BEYOND, THE APPROACH FOR HIGH STAKES DECISION MAKING THAT CAME OUT OF MEDICINE LED TO KIND OF A CASTING ASIDE BECAUSE THERE WAS NO MAPPING TO CREDIBLE MEASURES AND SO ON. THE FRAMEWORK CAME OUT OF NLM-FUNDED FRAMEWORK, KIND OF SAD TO SEE THE LEADERSHIP NOT BEING THERE THESE DAYS WHEN IT CAN BE AND ALIGNS WITH THE STRATEGIC PLAN. AND SO I GUESS WE ALSO HEARD ABOUT HOW LIKE THIS ORGANIC, WHEN OTHERS UPDATE THEIR CALLS, FUNDING OPPORTUNITY ANNOUNCEMENTS, IT'S A CHANCE FOR THE NLM TO INJECT NEW CONCEPTS THAT MAY BE ALIGNED WITH OUR STRATEGIC PLAN INTO CALLS AND VICE VERSA. AGAIN, WE CAN GO BEYOND ORGANIC TO DOING I WOULD SAY MORE INTENSIVE THOUGHTS, WHAT SHOULD OUR CALLS LOOK LIKE? THE TWO PILLARS WE ENDED UP LOOKING MORE AT MEETING WERE ACCELERATE DISCOVERY AND REACH MORE PEOPLE THROUGH ENHANCED DISSEMINATION AND ENGAGEMENT AND THEIR SUBTOPICS, AND THE BIGGEST THINKING ABOUT TRULY EVIDENCE-BASED HEALTH CARE THROUGH ACCESS TO DATA SETS AND INFERENCES AND THIS LED TO THE DISCUSSION ABOUT SOMETHING THAT'S CLEARLY AN OPPORTUNITY AREA, MIGHT BE CALLED UNFORTUNATELY IN THIS DAY AND AGE, A BIG AUDACIOUS GOAL, BUT I WENT BACK TO MY OWN WORK AND TO THE EXAMPLES, BUT FROM MY KNOWLEDGE, TALKED ABOUT THIS, BUT I THINK CLEM McDONALD HAD SIMILAR EXPERIENCES AND OTHERS. (INDISCERNIBLE) BUT PEOPLE WORKING WITH ELECTRONIC HEALTH RECORD DO IT IN A LIMITED FASHION, IN PART NLM CONTRIBUTED AND CURE RATED DATASET BY MIMIC OR ICU, MIMIC ONE AND TWO AND NOW MIMIC THREE, TAKE THE MIMIC DATASET, BOSTON, AND YOU PUT IT UP ON A PICTURE OR A CHART, AND LOOK AT THE CASCADE OF PAPERS, RESEARCH AND IDEAS THAT CAME OUT OF THAT DATASET BEING AVAILABLE AS AN EXAMPLE, EVEN FOR BEAUTIFUL VIDEO ABOUT HOW RESEARCH WORKS. AND THEN YOU THINK, WELL, THAT'S ONE TINY AND ONE OF THE ONLY AVAILABLE DATASETS FOR ACADEMICS TO HAMMER ON. WHAT THAT TOOK TO CREATE AND WHAT IT'S LIKE, ANONYMIZED AND SO ON, HOW IT'S STORED AND CURATED TODAY TO THIS DAY, I HAVE A STUDENT RIGHT NOW WORKING ON THAT DATASET, BRAND NEW DATA DIRECTION AGAIN. IT WAS BROUGHT UP, WORK AT MICROSOFT, PAID HALF MILLION DOLLARS SIX YEARS AGO TO BUILD THE COKO DATASET, THIS CASCADE COMPETITION BETWEEN GOOGLE, MICROSOFT, CAPTURING IMAGES, CAME POPPING OUT OF THAT, THE CRAZY IDEA, HALF A MILLION DOLLARS INTO FIVE YEARS AGO. SO IF YOU BOOK RIGHT NOW BEYOND THOSE KINDS OF VERY SMALL AND VERY LIMITED AVAILABLE DATASETS, THE PEOPLE OF PUBLISHING HAD SOME SECRET SEMI CRAZED PATHWAY INTO A DATA SOURCE, TO A BUSINESS RELATIONSHIP, TO BEING AT THE V.A., BEING A P.I. AT THE V.A. BY THE WAY, ANYBODY V.A. HOSPITAL, DATASETS, MASSIVE AND UNMINED DIAMOND MINE, NOBODY KNOWS. NOBODY UNDERSTANDS THAT. >> YOU CAN'T. >> AGAIN, YOU CAN'T. BUT EVEN LIKE A PALPITATIONS COMING OUT, MY EXPERIENCE, HAD A SPECIAL RELATIONSHIP, MICROSOFT RESEARCH AS AN EXAMPLE, MANY PEOPLE WORKING IN THIS FIELD WITH MEDSTAR, OUR LOCAL MEDSTAR HERE, MICROSOFT ACQUIRED (INDISCERNIBLE) WHICH BECAME (INDISCERNIBLE), A LONG STORY, A BUSINESS RELATIONSHIP, TEN OF US BECAME CANDY STRIPERS, WE GOT SHOTS, ALL THE RIGHT SHOTS, WE COULD BE CANDY STRIPERS WITH BADGES, AND THEN GOT ACCESS TO DATA. [LAUGHTER] EVEN THEN -- SETTING UP A FIRE WALL, INTENSIVE SCHOLARLY RESEARCH ON HOW DO YOU DO RESEARCH, HOW DO YOU STUDY A MASSIVE URBAN DATASET WITHIN A HOSPITAL UNDER CONSTRAINTS OF HIPAA? WELL, FOR US TO EVEN TALK ABOUT THAT WOULD TAKE -- IT'S SEVERAL PAPERS OF NOT JUST PRACTICES BUT SCHOLARSHIP ON HOW YOU DO THAT WELL. AND THEN WE WERE PRIVILEGED, BECAUSE WE CAN'T SHOW THE DATA TO ANYBODY ELSE, AND THAT DATA SET LED US TO C. DIFF STUDIES, NETWORK STUDIES, TRANSFER LEARNING STUDIES BETWEEN MEDSTAR HOSPITALS, YOU CAN'T TRANSFER DATABASES, PEOPLE THOUGHT YOU COULD PREVIOUSLY, MACHINE LEARNING ALGORITHMS AMONG HOSPITALS, MEMORIAL NOT FAR FROM HERE, WE WOULDN'T HAVE KNOWN THAT OTHERWISE. SAYING ALL THIS, THE DISCUSSION WAS WE HAD THE EXAMPLE OF DISCOVERY LIKE CLEM POINTED OUT REGENERON'S ROLE USING ANTIBODY STUDIES, TEN PATIENTS THAT HAD THIS INTERESTING -- >> 5,000 IN THE SET, THEY FOUND A HANDFUL THAT HAD IT. >> SO ONE FOCUS WAS THIS. PILLAR ONE, IT WOULD BE CLEARLY INCREDIBLE AUDACIOUS BREAK THROUGH IF WE FIGURED OUT A WAY WORKING WITH PARTNERS IN ACADEMIA AND INDUSTRY HOW TECHNICALLY AND POLITICALLY AND OTHERWISE THE BUILD AND SHARE DATASETS, SECONDLY TO MAYBE HAVE WORKSHOPS AND THINK THROUGH WHAT ARE ALL THE PIECES AND IT'S NOT JUST ENGINEERING, WE NEED TO ACTUALLY STUDY DATA FROM ELECTRONIC HEALTH RECORDS SYSTEMS, INCLUDING FOR PATIENTS, HOW DO YOU JOIN DATASETS OVER TIME, PATIENTS ASSIST THEM, TO HAVE LONGITUDINAL BASIS, THAT MAKES SENSE, ET CETERA, ET CETERA, ET CETERA. DON'T HAVE BIG MASSIVE BLIND SPOTS IN THEM. AND THEN TO START THINKING DEEPLY, THINK ABOUT THIS, THERE ARE NOW MULTI-PARTICLE APPLICATIONS COMING OUT OF COMPUTER SCIENCE, ENCRYPTION THAT ALLOWS MULTI-DATABASES TO BE JOINED WITHOUT SHARING THEM WITH THE OWNERS, BUILT AND SHARED MACHINE LEARNING MODELS. THERE ARE WAYS TO DO MACHINE LEARNING ON COMPLETELY ENCRYPTED DATA, END TO END WHERE DATA IS NEVER SEEN. YOU CAN IMAGINE THAT THE TECHNICAL PATHWAY WHICH NEEDS TO BE STUDIED AND MAYBE BY NLM IF NOBODY ELSE, HOW TO DO THAT WELL. THE OTHER COMMENT WAS I HAVE A COLLABORATOR, IN ISRAEL, AND ACCESS TO 2.5 MILLION PATIENT RECORDS, THREE OR SOMETHING, LARGE SCALE MEDICAL SYSTEM IN ISRAEL. AND SO WE'RE LOOKING AT CONNECTIONS, MY GOSH. THESE ARE LIKE INCREDIBLE GOLD MINES, WHY COULDN'T WE DO THAT? IN THE UNITED STATES? THERE'S A WHOLE CYCLE, INSTEAD OF COMMENTS ABOUT HOW TO DO THIS WELL, AND IT WOULD TAKE A MAJOR -- LIKE WE ALL KNOW THIS IS THE ELEPHANT IN THE ELECTRONIC HEALTH RECORDS ROOM, RIGHT? NO ONE CAN GAIN ACCESS TO THESE PROPRIETARY HEALTH RECORDS. SYSTEMS LIKE KAISER, WE HEARD THIS FROM SOMEBODY, SHARING OUT MEDICAL RECORDS, CONSIDER LIKE A LEADING EDGE FOR INFORMATION IN SOME CASE, POLICIES. AND ALL THAT YOU CAN DO WITH THIS DATA IS CALLED DISCOVERY, NEW MEDICAL KNOWLEDGE, PREDICTION ABOUT OUTCOMES. THERE'S UNDERSTANDING WHEN THESE MACHINE LEARNING AND OTHER TYPE OF METHODS BE APPLIED ON A HOSPITAL-SPECIFIC MANNER, YOU CAN'T GENERALIZE KNOWLEDGE, AND WHERE YOU CAN, THAT ISSUE IS A WHOLE OTHER DISCUSSION. AND NOTIONS OF LIKE HOW DO YOU BUILD POLICIES BOTH NATIONAL AND HOSPITAL SPECIFIC, WITH COST-BENEFIT ANALYSIS ON TOP OF OUTCOMES DATA AND PREDICTIVE MODELS. AND SO MANY TOPICS. YOU CAN IMAGINE WE CAN SIT DOWN AND WRITE ON THE FIRST PILLAR JUST FOCUSING ON AGAIN AUDACIOUS GOAL OF FIGURING OUT HOW TO GIVE THE DATASETS, OPENING THEM UP TO FUEL INNOVATION, ACADEMICS, WOULD BE A MAJOR BOON TO WHAT NLM COULD DO IN THIS SPACE. >> OKAY. >> IS THAT OKAY, CLEM AND MILT? OKAY. >> (INAUDIBLE). >> DINA AND I WERE TALKING ABOUT AFTERWARDS, AND I THINK IT WAS ACTUALLY DAN THAT CAME UP WITH THAT. >> WHAT WAS THAT? >> THINK IT'S ACTUALLY DAN THAT COINED THE SYNTHETIC DRIER DERIVATIVE TERM. WHAT WE WERE TALKING ABOUT, REALLY DIFFERENTIATING BETWEEN WHAT USES YOU MIGHT MAKE FOR DISCOVERY FROM A DATABASE THAT WASN'T SYNTHETIC DERIVATIVE AND WHEN YOU (INDISCERNIBLE) THAT WAS NOT SYNTHETIC. >> (INAUDIBLE). >> YEAH, IT WAS DE NOVO TERM AT VANDERBILT FOR -- IN ELECTRONIC MEDICAL RECORDS SYSTEM TAKEN AS A WHOLE WHERE THE DERIVATIVE FORM WAS STUFF TAKEN OUT, DELETE THE HIPAA ELEMENTS, AND SYNTHETIC INTRODUCTION OF STRUCTURED DISINFORMATION SO DATES WERE THERE WITH PROPER RELATIONSHIPS BUT ALL DATES WERE WRONG SO THEY WEREN'T THE ACTUAL DATES OF SERVICES. SO IN GENERAL IT WAS A SYSTEMATICALLY DERIVED RESEARCH RESOURCE WHICH ESSENTIALLY WAS HIPAA COMPLIANT IN TERMS OF DEEP SCRUBBING OF THE ELEMENTS THAT WOULD SUPPORT INADVERTENT REIDENTIFICATION. IT HAS A COMPANION LATER ON, RESEARCH DERIVATIVE, WHICH WAS THE FULLY IDENTIFIED DATA WHICH WAS APPROPRIATE IRB APPROVALS, SUCH AS YOU WOULD GO THROUGH AS A CANDY STRIPER WHO IS AUTHORIZED, WHERE YOU GET THE REAL DATA, WHERE DATES WERE IMPORTANT, RIGHT? EITHER FOR KNOWING A DISEASE OCCURRED IN THE SPRING AND NOT -- YOU KNOW, THAT SORT OF THING. AND SO THOSE TWO DEFINITIONS OF A DE-IDENTIFIED DATA RESOURCE THAT'S VERY RICH AND HAS ALL OF THE ELEMENTS OF THE ACTUAL THINGS THAT OCCURRED IN THE REAL WORLD WITH RESPECT TO HEALTH, AND REPRESENTING THE EMR, AND THEN THIS VERSION THAT HAD SPECIAL PROTECTIONS BUT IT WAS A RESEARCH COPY, STRUCTURED IN SUCH A WAY TO SUPPORT DISCOVERY SCIENCE, TESTING. >> AN INTERESTING TOPIC THAT SHOULD BE DISCUSSED, AND FUNDED, SYNTHETIC DATA IS A HUGE AREA RIGHT NOW, MACHINE LEARNING, THERE'S A WHOLE AREA CALLED HE (INDISCERNIBLE), DEEP NEURAL NETWORK TO GENERATE REALISTIC DATA, OTHER SIMULATIONS NOW, BUT THE ISSUE IS ONCE YOU DO THAT HOW DO YOU AGAIN MAP THE GAPS, UNDERSTANDING IT WAS REALITY AND SYNTHETIC DATA AND WELL AS PROTOCOL, TRANSITION TO REAL DATASET WHEN NEEDED. I WOULD SUGGEST ONE TOPIC, THE WHOLE IDEA OF ACCESS, SO RIGHT NOW IT'S PRETTY CLEAR WHAT PEOPLE DO (INAUDIBLE) IT'S A PROCESS TO GET ACCESS. IT'S NOT CLEAR ACCESS PROCESS COULDN'T BE TEMPLATED AND OPENED UP TO MORE RESEARCH, YOU HAVEN'T PULLED THE RIGHT LEVERS. PART OF MICROSOFT OR OTHER SYSTEMS, OTHER TIMES PEOPLE HAVE DONE THE RIGHT THINGS TO GET CERTIFIED, NOT NECESSARILY THAT PEOPLE -- RESEARCHERS CAN'T BE CERTIFIED, BUT THERE'S NO AMOUNT OF PROGRAMS DOING THAT. WHO SAID THIS? PATTY SAID THERE'S NO WAY. WHY? WHY CAN'T WE AS A NATION FIGURE OUT HOW WE CAN GET V.A. DATA, CANCER RESEARCHERS, PROPER CREDENTIALS? >> I TOTALLY AGREE WITH YOU. I MEAN ONE OF THE THINGS WE RUN INTO WITH OUR CURRENT EMPHASIS ON OPEN DATA AND OPEN SCIENCE IS WE ARE ADVOCATING RESEARCH FUNDED BY THE FEDERAL GOVERNMENT SHOULD HAVE NOT JUST THE QUESTIONS ACCESSIBLE AND RESULTS ACCESSIBLE BUT THE ACTUAL DATA ACCESSIBLE TO THE PUBLIC, TO INDUSTRY, TO CITIZEN SCIENTISTS, AND THE V.A. IS A HUGE HOLDOUT IN THIS PROCESS AND I'M SORRY WE DON'T HAVE A BETTER V.A. EXPERT HERE TO SPEAK TO THAT BUT IT'S A SIGNIFICANT ISSUE. TO BE VERY HONEST, SO IS KAISER. SO IS MEDSTAR. THE IDEA WE WOULD DO HEALTH SERVICES RESEARCH OR RUN A CLINICAL TRIAL IN AN INSTITUTION, HAVE THE INSTITUTION SAY YOU CAN'T HAVE THE DATA BECAUSE IT'S OUR PATIENT RECORD, WE HAVE A LOT OF POLICY TO FIGURE OUT IN THIS AREA. AND I THINK WE HAVE A ROLE TO PLAY AS A LIBRARY BUT ONE OF THE THINGS, I WANT TO GO BACK AND ASK THE COMMITTEE ABOUT, DID YOU -- OTHER THAN TALKING ABOUT GENERAL METHODOLOGIES AND HOW WE NEED TO ADVANCE THEIR USE WERE THERE THOUGHTS ABOUT WHAT PROBLEMS WE SHOULD TACKLE THAT ARE METHODOLOGICAL OR COMPUTATIONAL OR CURATIONAL IN NATURE, BASED ON THOSE METHODS? >> YES, CAUSAL REASONING, HANDLING RECORD GAPS, THE PROSPECT A NATIONAL IDENTIFIER MIGHT BE INTERESTING FOR PATIENTS TO LINK TO TO GET DATASETS TOGETHER. THIS IDEA OF DRUG REPURPOSING, TRANSFER OF KNOWLEDGE ALONG THE DIFFERENT POPULATION CENTERS. >> SO CAN YOU TALK A LITTLE ABOUT THE DRUG REPURPOSING ONE THAT FROM A MEDICAL INFORMATICS OR METHODOLOGICAL OR ANALYTICAL APPROACH WHAT KINDS OF -- WOULD YOU SEE THAT AS SOMETHING WE'VE INVESTED IN A EXTRAMURAL PROGRAM TO HAVE MULTIPLE DEMONSTRATION PROJECTS ABOUT METHODS TO MAKE THAT HAPPEN OR THAT WOULD BE SOMETHING THAT WOULD BE GOOD TO SOLVE AND WE DON'T KNOW EXACTLY HOW WE SOLVE IT? >> YEAH, IT CAME UP IN PASSING AND NOTES. THERE'S LOTS OF FAULT DISCOVERY FROM MEDICAL RECORDS OF EFFECTS OF VARIOUS KINDS OF TREATMENT, AND HOW DO YOU DO CLINICAL TRIALS WITHIN DATASETS WITHOUT, YOU KNOW, SPECIFIC (INDISCERNIBLE) OF PROSPECTIVE STUDIES, A REAL INTERESTING QUESTION. I'LL BE SPENDING MY AFTERNOON ON THIS, (INAUDIBLE) BUT THESE ARE RICH PROBLEMS AND YOU CAN IMAGINE A SET OF INTERESTING QUESTIONS COME UP HOW TO DO THIS WELL THAT CERTAINLY GETS AT THE IDEA OF HARNESSING MEDICAL DATA, MEDICAL ABSTRACTS, MEDICAL PAPERS, MEDICAL FINDINGS, BIOMEDICAL DATA FROM HEALTH RECORDS TO THINK THROUGH GOING BEYOND THINGS LIKE PREDICTIONS AND CLASSIFICATION INTO BUILDING NEW KINDS OF KNOWLEDGE. AND THIS INCLUDES DISCOVERY. SO DISCOVERY OF FACTS AND DISCOVERY OF NEW KINDS OF COSTS AND BENEFITS OF TREATMENTS INCLUDING MEDICATION IS A BIG OPPORTUNITY SPACE. IT'S THE KIND OF THING THAT, BACK TO THE WORKSHOP IDEA, HAVING A WORKSHOP ON THIS, WHERE WE CALL PEOPLE TOGETHER TO HELP US AT THE NLM THINK THROUGH THE ONTOLOGY OF DISCOVERY FROM, SAY, STARTING WITH NLM RESOURCES AND SERVICES, PubMed, HOW DO YOU GET THE GRAPHS, THE NLM TO THINK THROUGH WHAT IT WOULD MEAN TO ANSWER THESE QUESTIONS, DO YOU NEED ACCESS TO CERTAIN PATIENT DATA, WHAT WOULD THAT TAKE, IMAGINE DISCOVERY-CENTRIC IN THAT FIRST PILLAR, DISCOVERY-CENTRIC SET OF METHODS, WHAT IS NLM BEST POSITIONED IN THE WORLD, IN THE NATION, TO ADDRESS THAT NO ONE ELSE CAN. IF YOU THINK ABOUT IT, I DON'T SEE NSF, DARPA TACKLING THESE PROBLEMS OR BEING MOTIVATED VERSUS THE OPPORTUNITIES THAT ARE SORT OF HANGING ON THE FRONTIER IN THE BIG AUDACIOUS DEPARTMENT FOR NLM AND HEALTH CARE. >> REALLY QUICK PLEASE. >> A QUESTION OF INFORMATION. IN DoD WE GET OUR BUDGET FROM THE COMPTROLLER, AND YOU CAN USE THIS MONEY FOR OPERATIONS AND MAINTENANCE, THIS MONEY FOR RESEARCH, THIS MONEY FOR PROCUREMENT. DOES HEALTH AND HUMAN SERVICES BIN YOUR MONEY SO YOU CAN'T MOVE IT FROM ONE CATEGORY TO ANOTHER OR IS IT ALL YOUR MONEY AND YOU CAN MOVE AROUND AS MUCH AS YOU WANT? >> IT'S BOTH, ACTUALLY. SOME OF OUR FUNDERS, OTHER FUNDS, DEPENDING HOW MUCH WE SPEND IN ONE AREA, WE SPEND A PORTION IN ANOTHER AREA. BUT WE DO HAVE SOME FLEXIBILITY. THE CHALLENGE THAT WE HAVE HERE AT THE LIBRARY IS THAT 80% OF OUR BUDGET, PROBABLY 85% IS DIRECTED TO WHAT WE CONSIDER PRODUCTS AND SERVICES. SO THERE'S -- WE'VE BEEN HAVING CONVERSATIONS. THERE'S COMPETITION BETWEEN RESEARCH AND PROJECTS AND SERVICES. YOU'VE ALL HEARD ABOUT THE EXPENSE OF SERVICES WE WOULD LIKE TO BE ABLE TO DO WHICH COULD BECOME EXPENSIVE RESEARCH, THAT'S A POSITION I'M UNWILLING TO SACRIFICE. WE HAVE TO EXPAND OUR RESEARCH ENTERPRISE. >> CLEM? >> (INAUDIBLE). [LAUGHTER] >> ONE OF THE THINGS THOUGH, EMPHASIZE THE DATASET IS THE BIG THING. IT'S NOT THE METHOD. NO ONE LOVES THAT. BUILDING A DATASET, GETTING A DATASET IS NOT RESPECTED SORT OF IN SOME SENSE BUT THAT'S WHAT MAKES EVERYTHING HAPPEN. AND THE SECOND THING WAS THAT I DON'T KNOW, YOU DIDN'T BRING IT UP THEN BUT THERE'S A REAL PROBLEM NOT HAVING COMPLETE DATA. WE LOOKED AT ONE HOSPITAL, ASCERTAINMENT ON THE FOLLOW-UP OF (INAUDIBLE) SO THE CONNECTION IS IMPORTANT. THE WORKSHOP TO TRY TO FIGURE OUT WHAT WE MIGHT DO WITH THE TARGET, BROAD DATASET FROM CLINICAL RECORDS SOMEHOW, AND A WORKSHOP TO FIGURE OUT HOW, HONES IN ON SPECIFIC METHOD OR PROBLEM. >> THANKS FOR CLARIFYING. >> REAL QUICK, LISA. DID YOU HAVE YOUR HAND UP? >> A QUESTION ABOUT THE HUMAN ASPECT OF THIS ENTERPRISE, WHICH IS THE OPEN SCIENCE PIECE OF THIS BECAUSE A LOT -- ONE OF THE QUESTIONS I THINK IS POTENTIALLY OUR ROLE RELATIVE TO -- WELL, SPECIFIC TO WHAT IS REPRESENTED, THIS OPEN COLLABORATIVE, AND THE GENERAL IDEA OF WHAT WE SHOULD BE DOING TO THE RESEARCH INTO THE QUESTION OF HOW TO SUPPORT OPEN SCIENCE THAT MAKES DATASETS MORE USEFUL, I'LL JUST THROW THAT OUT. >> RIGHT. THANK YOU. THANK YOU, LISA. OKAY. AND YOU WERE GOING TO TALK ABOUT THE LAST ONE, THE STRATEGIC PLAN. >> IN A WAY IT IS, BECAUSE MANY OF THE ISSUES THAT HAVE COME UP IN THE OTHER SUBCOMMITTEE REPORTS ALSO RELATE TO THE STRATEGIC PLAN BECAUSE IT'S THE OVERALL UMBRELLA AND WE'RE MOVING FORWARD. IT SHOULD BE THE UNDERLYING PRINCIPLES BENEATH THE RESEARCH AND PUBLIC SERVICES AND THE COLLECTION. SO I WAS JOINED IN THE SESSION BY JOE TAYLOR AND DAN MADEY, AND MIKE WAS OUR STAFF PERSON. TODD WAS THERE AS WELL. AND PATTY JOINED US PART WAY THROUGH, WITH THAT CREW I'M SURE THEY WILL BE HAPPY TO CHIME IN AND FILL IN THE GAPS. SO WE HAD TWO PATHS OF DISCUSSION. ONE WAS A MICRO LEVEL, HOW IS NLM TRACKING IMPLEMENTATION OF THE STRATEGIC PLAN. AND THEN A BIGGER PICTURE, YOU KNOW, WHAT DOES THE STRATEGIC PLAN MEAN, HOW DOES THE BOARD RELATE TO IT, AND HOW DOES IT INFORM THESE OTHER ACTIVITIES OF THE LIBRARY. SO DOING THE EASY STUFF FIRST, WE LOOKED AT THE ES N TOOL, OFFICE OF STRATEGIC INITIATIVE, TYPICAL CASCADING FROM PILLARS OF STRATEGIC PLAN TO GOALS TO OBJECTIVES, AND THEN WITHIN OBJECTIVES THERE ARE PROJECT TEAMS, PROJECT MANAGER RESPONSIBLE FOR RUNNING THINGS AND KEEPING EVERYONE INFORMED, AND ALSO A MEMBER OF THE LEADERSHIP TEAM. THIS IS -- WE HAD A LONG DISCUSSION ABOUT THE NEED FOR COMMUNICATION, INTERNALLY, TO GET BUY IN, TO BRING EVERYBODY ON BOARD, ALL THE THINGS YOU DO AS PART OF CHANGE MANAGEMENT AND MOVING FORWARD WITH THE STRATEGIC PLAN. THERE IS A MULTI-FACETED COMMUNICATIONS EFFORT. THERE'S A WIKI THAT PUBLISHES OUT CONSENT, BUT NOT THE ENTIRETY OF THE ESN TOOL FOR ANYONE IN THE LIBRARY TO LOOK AT. THERE ARE TOWN HALL MEETINGS, BROWN BAGS. PALLETY TALKED PATTY TALKED ABOUT THIS IN HER PRESENTATION YET. THERE'S A STRATEGIC PLAN IMPLEMENTATION COUNCIL WITH REPRESENTATIVES FROM EACH DIVISION, EACH REPRESENTATIVE IS CHOSEN BECAUSE THEY ARE WELL VERSED IN WHAT THEIR DIVISION IS DOING RELATIVE TO THE STRATEGIC PLAN. EXCUSE ME. BRINGING THAT INFORMATION TO SHARE AND TAKE THAT INFORMATION FROM OTHER DIVISIONS AND THE OVERALL ACTIVITIES TO THEIR OWN DIVISION. AND I WAS ENCOURAGED TO HEAR THAT IN THESE MONTHLY MEETINGS THAT A NUMBER OF REQUESTS WERE COMING TO CROSSWALK BETWEEN SOME STRATEGIC PROJECTS AND I THINK THAT SHOWS A GOOD SYNERGY AROUND THE PLAN THAT THINGS ARE MOVING FORWARD AND IN A GOOD WAY. WE DID TALK ABOUT PRIORITIZATION. MIKE'S TAKE, WHAT HE SHARED WITH US, A LOT OF WHAT WAS ACTUALLY ROLLING FORWARD RIGHT NOW, LOW-HANGING FRUIT, THE KIND OF NO BRAINERS, THE VERY -- THE THINGS YOU LOOK AT AND GO, WELL, OF COURSE WE HAVE TO DO THAT. BUT THERE WILL BE A NEED FOR INPUT FROM THE BOARD AS WE GO FORWARD AND THE TENSION BETWEEN RESOURCES AND DESIRES BECOME MORE IN PLAY. SO THERE WILL ALSO BE A PUBLIC-FACING COMMUNICATION TOOL THAT WILL GO OUT AND UPDATE THE PUBLIC IN GENERAL ON THE STRATEGIC PLAN, AND WHERE NLM IS WITH ITS IMPLEMENTATION. ONE OF THE DISCUSSIONS WE HAD WAS HOW SHOULD THE BOARD AND HOW SHOULD THE SUBCOMMITTEE BE INFORMED OF HOW THIS IS PROGRESSING. WE DIDN'T COME OUT WITH A DEFINITIVE ANSWER TO THAT, BUT A COMMITMENT TO WORK OUT OF COMMUNICATION THAT KEEPS THE BOARD APPROPRIATELY INFORMED WITHOUT GETTING UP MIRED IN THE WEEDS OF THE IMPLEMENTATION. WE DON'T WANT TO MICRO MANAGE THE OPERATIONS AND IMPLEMENTATION OF THE PLAN, AND IN FACT OUR CHARGE STATES GUIDES AND BENCHMARKS PROGRESS, WE DID ASK THAT BENCHMARKS BE REMOVED BECAUSE WE DIDN'T FEEL LIKE WE WERE IN A POSITION TO BE BENCHMARKING THE PROGRESS. WE TRUST THE STAFF THAT DO THAT. DAN CONTRIBUTED THAT THE CHARGE OF ADVISORY COMMITTEE TO GIVE THEIR OPINIONS AND WE THOUGHT WE HAD THAT ONE NAILED. >> NO SHORTAGE OF OPINIONS. >> YES. BETWEEN THE THREE BOARD MEMBERS WE FIGURED SIX OR SEVEN OPINIONS IN THERE. SO, WE DID IDENTIFY WAYS WE COULD WORK WITH THE COMMITTEE. I'M SORRY, WORK WITH STAFF. OPINIONS, GUIDANCE, WE THOUGHT OVERSIGHT SOUNDED DRACONIAN ALSO, SO WE'RE BEING VERY, VERY CAREFUL NOT TO OVERSTEP OUR BOUND, BUT ALSO TO CONVEY OUR EXTREME WILLINGNESS TO BE INVOLVED AND TO BE A RESOURCE AND TO BE HELPFUL, TO HELP WITH ROAD BLOCKS AS THEY COME UP, TO HELP WITH SETTING PRIORITIES, TO BE A CONDUIT FOR INFORMATION TO THE REST OF THE BOARD, AND TO HELP DIRECT QUESTIONS OF MEASUREMENT AND ASSESSMENT AND -- LET'S SEE. AND THEN WE ALSO NOTED THINGS LIKE THE BLUE RIBBON PANEL, REPORT TO THE OTHER SUBCOMMITTEES AND THINGS THAT WILL BE IMPORTANT INFORMATION FEEDING INTO THE IMPLEMENTATION OF THE STRATEGIC PLAN AND HOW DO WE RELATE TO THAT INFORMATION. AND OTHER INFORMATION THAT'S AVAILABLE TO THE STAFF, BUT NOT AVAILABLE TO THE GENERAL PUBLIC. SO-- WHAT DID I MISS THERE? >> JUST THE TAIL END DISCUSSION OF THE VALUE, IF ONE COULD BE FOUND, OF A FLAGSHIP NEW START AUDACIOUS THING THAT THE LIBRARY COULD DO AND REALLY ONLY THE LIBRARY COULD DO AND EVERYONE WOULD THINK WELL WITHIN THE PROVINCE OF THE NATIONAL LIBRARY OF MEDICINE TO DO SO A BRAND-NEW START OF CREATING SOMETHING THAT'S NEVER BEEN -- THAT IS USEFUL AND HAS NEVER BEEN CREATED BEFORE, AND SO WE DIDN'T HAVE THE SOLUTION AT THAT HAND, BUT THE OPPORTUNITY IS CLEARLY THERE, IT WAS THE MARK OF THE ORIGINAL 85-86 PLAN, WHAT BECAME NCBI WAS THE NEW GREEN FIELD START FOR THE LIBRARY, AND SO CAN ANALOGOUS GREEN FIELD BE FOUND IN 2018 THAT WAS THE QUESTION WE ENDED UP WITHOUT PROVIDING A CLEAR ANSWER. >> OKAY. AND I'LL ADD ONE THING TO THAT THAT I SKIPPED OVER. WE TALKED VERY BRIEFLY ABOUT THE LIBRARY'S ROLE AS AN EXEMPLAR OF LIBRARIES, AND THAT MANY LIBRARIANS, LIBRARIES OUT IN THE FIELD LOOK TO NLM AS AN EXAMPLE OF WHAT A LIBRARY CAN BE AND CAN ASPIRE TO AND THAT WE DIDN'T WANT TO LOSE SIGHT OF THAT IN THIS PROCESS. >> WELL, I ACTUALLY CAME AWAY FROM THE DISCUSSION WITH A CLEAR DISCUSSION FROM THE BOARD MEMBERS WHO WERE THERE THAT SAID ALL OF OUR HIRES IN INVESTIGATIONAL POSITIONS AND SCIENCE POSITIONS SHOULD BE DONE IN A WAY THAT ADVANCES OUR MISSION AND STRATEGIC PLAN AND THAT THIS IS A SOMEWHAT OF A SWITCH OF DIRECTION IN THE NIH WHERE INVESTIGATORS ARE OFTEN HIRED BECAUSE THEY ARE OUTSTANDING INVESTIGATORS WITH ONLY GENERAL CONSIDERATION DO THEY FALL WITHIN THE PURVIEW OF THE MISSION OF THE INSTITUTE. THIS IS A CONVERSATION WE'LL HAVE TO CONTINUE TO HAVE HERE WITHIN THE LEADERSHIP BECAUSE WE HAVE THREE -- WE'RE SEARCHING RIGHT NOW FOR THREE INVESTIGATIONAL POSITIONS, THEY COULD EXTEND WORK WE'RE CURRENTLY DOING. WE'VE SEEN YEARS OF REPORTS FROM BOTH THAT SAID (INDISCERNIBLE) OF THAT. WHAT I ATTAIN TO, IT'S BEEN OBVIOUSLY ON MY MIND SINCE WE MET YESTERDAY AROUND NOON, WHAT I'VE COME TO THINK ABOUT THIS, AND WORKING WITH OUR CURRENT SEARCHES, DECISION MAKING ABOUT THE NEW POSITIONS, AS HAVING TO MAKE SURE WE FIND THE BEST CANDIDATE POSSIBLE WHO IS LIKELY TO ADVANCE THE LIBRARY'S MISSION IN WAYS THAT MAY BE STILL INVESTIGATOR INSPIRED, CREATIVE DRIVEN RESEARCH, BUT RESEARCH ALIGNED WITH THE MISSION OF THE LIBRARY AND OUR NEEDS FOR THE FUTURE. SO IT WAS AN EXTREMELY HELPFUL DISCUSSION BUT MUCH MORE DIRECTE THAN YOUR REPORT INDICATES. [LAUGHTER] >> I HAD A BENCHMARK. COUNT HOW MANY INVESTIGATORS YOU HIRE. >> I WOULD BE THRILLED IF WE COULD TELL YOU IN FEBRUARY WE HAVE THREE NEW INVESTIGATORS, THREE NEW SCIENTISTS EACH WITH A POST-DOC. WE GET THAT DONE BY FEBRUARY I WILL BE ABSOLUTELY THRILLED. >> AND STATE WHAT THE VISION IS. WE'RE NOT GOING TO HIRE ANYBODY WITHOUT VISION. >> WHICH OBJECTIVE OF THE STRATEGIC PLAN ARE THEIR ADHERING TO. >> YES. >> IT'S THE HALO EFFECT, AN INVESTIGATOR WHO NATURALLY WANTS TO DO THIS KIND OF RESEARCH WHICH HAS REAL WORLD CONSEQUENCES FOR THE LIBRARY'S CAPABILITIES, AS THEY BECOME SPECTACULARLY SUCCESSFUL AND WORLD CLASS IN THEIR OWN RESEARCH. AND SO IT DOES MEAN ALL RESEARCHERS QUALIFY, BUT THERE MAY BE MANY THAT CLEARLY WOULD. >> THE MISSION IS SYNERGISTIC. >> YEAH. >> QUIET. >> WE HAVE 15 MINUTES. WE DID THAT BEAUTIFULLY. I LOVE THIS DISCUSSION. THINK THIS IS ONE OF THE MOST FUN THINGS ABOUT THE BOARD OF REGENTS, BUT WE WANT TO MAKE SURE THAT THE DISCUSSION GOES SOMEWHERE. SO WHAT'S THE STRATEGY FOR THE FUTURE FOR THESE WORKING GROUPS? DO WE WANT TO KEEP THIS FORMAT? DO WE WANT MORE TIME? COULD OUR SECOND HALF DAY BE FOCUSED ON THIS AS WE COULD SEE WE'RE MAKING PROGRESS, WHAT ARE YOUR THOUGHTS? WHAT DO YOU WANT? >> I FOUND THE CONVERSATION THIS MORNING EXTREMELY HELPFUL. AND IT SOUNDS AS IF THE GROUP'S ENGAGED AND THERE WAS DEEP CONVERSATION AND WE HAVE SOME VERY INTERESTING AND FRANKLY SOME PROVOCATIVE IDEAS FROM THE GROUPS. I WOULD ALSO LIKE TO HAVE GOTTEN A LITTLE MORE OF A FOCUS OF WHAT YOU WANT TO DO THIS YEAR AND I HEARD THAT CLEAR FROM COLLECTION BUT DIDN'T HEAR AS MUCH FROM OTHER GROUPS ABOUT HOW CAN WE HELP YOU FIGURE OUT WHAT TO DO WITH OTHER TIME WHICH MIGHT MEAN THIS KIND OF CONVERSATION OCCASIONALLY BUT YOU DON'T SEE IT AS A STRUCTURE YOU WANT TO FOLLOW IN EACH MEETING. IT WOULD BE HELPFUL TO HEAR MORE FROM THE GROUPS WHO DON'T HAVE A PLAN FOR THE YEAR WHETHER YOU THINK, YES, THIS WAS AN INTERESTING DEEP DIVE BUT WE DON'T NECESSARILY NEED TO DO THIS EVERY MEETING. >> SO I FELT WITH OUR GROUP THAT WE STILL HAVE OPEN QUESTIONS HOW WE WANTED TO WORK. AND SO I THINK IT WOULD BE HELPFUL, MAYBE IF MIKE COULD SET UP A PHONE CONVERSATION FOR US AFTER WE HAD A CHANCE TO RECOVER, AND WE COULD HAVE AN AGENDA FOR THIS AS SPECIFICALLY FOCUSED ON NEXT STEPS AND A PLAN, PLAN FOR THE YEAR. >> CAN I -- >> GO AHEAD. >> DOING IT ONCE ISN'T ACTUALLY GOING TO TELL US THE VALUE, CONTINUITY OF DOING IT. SO MAYBE EVEN TWO OR THREE ITERATIONS OF THE SUBGROUP MODEL AND THEN AFTER A YEAR I WOULD SAY OKAY, WELL, ARE WE JUST NOT GETTING -- WE'RE COVERING THE SAME GROUND AGAIN, THAT WOULD BE EVIDENCE THAT IT'S NOT NEEDED. CLEARLY WE HAVE NOT COVERED ALL THE GROUNDS. >> RIGHT. >> IN ONE MEETING. THAT'S MY PREFERENCE TO LET IT PLAY OUT FOR A WHILE. IN LIGHT OF THE IDEA OF EXPANDING TIME, HOW DOES THE TIME WORK OUT, WAS THERE ENOUGH TIME FOR DISCUSSION, SHOULD IT BE SHORTER, WHO SESSIONS AND THEN A LOOK BACK? >> WE ALL OBEY THE RULES PRETTY WELL, YOU KNOW. >> (INAUDIBLE). >> TIME AT THE BOARD MEETING. >> WE HAD LIKE 20 TO 25 MINUTES ON EACH TOPIC, WHICH IS A LITTLE BIT -- >> BUT TO BE CLEAR, WE HAD THE TIME WE ALLOCATED YESTERDAY. >> RIGHT. >> AND TIME ALLOCATED TODAY. >> THE QUESTIONS ARE BOTH. >> I WOULD THINK ABOUT WHETHER OR NOT YOU WANT TO TAKE -- I DIDN'T KNOW ABOUT THIS, THIS CHARGE TO DO SOMETHING IN THE FIRST YEAR, THAT WASN'T ON MY LIST. FOR EXAMPLE, TAKE A SUBCOMMITTEE FROM THE WORKING GROUP, VOLUNTEERS, AND GIVE THEM A HOMEWORK ASSIGNMENT TO CONTINUE TO WORK BETWEEN THE MEETINGS ON SOME THINGS, (INAUDIBLE) I WOULD CALL A TIME. (INAUDIBLE) (ALL TALKING AT ONCE) DO A COUPLE OF THESE PROJECTS, FLESH SOMETHING OUT BETWEEN ONE OR TWO PEOPLE. >> OKAY. >> FOR EACH, IF THERE'S ACTUALLY A SET OF QUESTIONS, MAYBE SOMETHING MORE CONCRETE. WE JUST DON'T HAVE ENOUGH TIME OR CRITICAL MASS TO GET TO THE NEXT LEVEL FOR THIS RIGHT QUESTION. >> I THINK THAT'S FINE. AND IT WAS -- THE GROUPS FORM SLIGHTLY DIFFERENTLY. I DON'T WANT TO FORCE SMALL GROUP ACTIVITY WHEN THERE'S NO VALUE TO SMALL GROUP ACTIVITY. IF YOU'RE SAYING, YES, IT WAS OF VALUE, GIVE US TIME TO WORK IT THROUGH, THAT'S GREAT WITH ME. DO YOU LIKE THE IDEA OF 75-MINUTE SESSIONS, TWO DAYS, ONE WITH GROUPS, ONE WITH THE BOARD, TWO ONE-HOUR SESSIONS THE FIRST DAY AND ONE HOUR ON THE SECOND DAY AS OUR REPORT OUT, AND WE COULD RESTRUCTURE THE TIME. YOU DO HAVE SOME RESPONSIBILITIES AS A BOARD TO HAVE SOME BROADER PERSPECTIVE ON ASPECTS OF THE LIBRARY BUT IN THIS PARTICULAR MEETING WE DID NOT BRING IN OTHER INSTITUTE OR CENTER DIRECTORS TO ADDRESS THE BOARD, WE OFTEN DO THAT. WE DID PRESERVE THE RESEARCH PRESENTATION, WE DID PRESERVE ONE PRESENTATION REGARDING ONE OF OUR OPERATIONS AND I THINK THAT CONNECTING WITH OUR OPERATIONS IS AN IMPORTANT THING TO DO. BUT WE CAN, I MEAN, IT'S YOUR MEETING SO WE CAN REORGANIZE THE TIME WHATEVER WORKS BEST FOR YOU. >> OKAY, CAN I -- I SAW TWO VERY PRESSING THINGS IN THE DISCUSSION. ONE WAS THE COLLECTION. AND THAT SEEMED TO BE THE SOMETHING THAT WE HAVE TO DECIDE IN A YEAR. THAT'S A BIG POLICY DECISION THAT'S PRETTY URGENT. THE OTHER THING I SAW, AND YOU HAVE TO ADVISE ON WHAT YOU'RE THINKING, IS THIS BIG HAIRY AUDACIOUS PROJECT IDEA. IT SEEMS LIKE THAT'S SOMETHING PEOPLE CAN GRAB ONTO. >> OKAY. >> NOW WHAT'S THE PROCESS FOR THAT? AND IT SEEMS LIKE DECIDING THE PROCESS FOR THAT NEEDS TO BE DONE QUICKLY. SO DOES THAT INFLUENCE WHAT WE'RE DOING? >> WELL, IT CERTAINLY GIVES CHARGE, AND I THINK HAVING SAT INSIDE THE DISCUSSION THIS MORNING FROM THE PUBLIC SERVICE, THERE'S A LOT OF NEED THERE, DECIDE HOW MUCH WE CAN FOCUS ON AT A GIVEN POINT IN TIME AND TAKE THAT FORWARD. I HEARD SOME PRETTY RADICAL DIRECTION FOR THE LIBRARY WITH THAT. IF WE'RE GOING TO MAKE PARTNERSHIPS OR START TARGETING COMMUNITIES WE HAVE DIFFERENT THINGS TO DO. AND FROM THE STANDPOINT OF WHAT WE NEED TO MAKE SURE YOU'RE ENGAGED IN, THE STRATEGIC PLAN IS CRITICAL, AS A SUBGROUP, AS A REPORT TO THE WHOLE GROUP. > IN THAT GROUP WE HAVEN'T GOT A GOAL FOR THE YEAR EITHER. >> RIGHT. >> IT'S REALLY DIVING. >> ALTHOUGH WE COULD MAKE THIS A CLARIFICATION COMMENT, AUDACIOUS GOAL, A YEAR ONE GOAL FOR US. >> AND THAT'S PROBABLY CROSS-TALK BETWEEN THE TWO GROUPS. >> I WOULD SAY, THREE, THE RESEARCH FRONTIERS GROUP REPORTING ALONG THE LINES SOME AUDACIOUS ACTIVITIES RELATED TO CLINICAL DATA, CLEAR THINGS THAT CAME OUT OF THE PUBLIC SERVICE GROUPS AND MAYBE PUTTING THAT TOGETHER WITH STRATEGIC PLANNING GROUP, HELPING LOOK BROADLY ACROSS THE NLM, A BIG AUDACIOUS GOAL. >> WE NEED TO TALK ABOUT THE PROPERTY BY WHICH WE WORK ACROSS THE GROUPS. >> YEP. SO DO WE TAKE A BOARD CALL? >> JAMES SUGGESTED WE SET UP SMALL GROUPS. FIGURE OUT PROCESS. >> I WOULD SAY THAT -- I'M SORRY. I FELT WE COULD HAVE USED SOME MORE TIME IN OUR SMALL GROUP BREAKOUT. NOW, I DON'T KNOW IF WE HAVE SOME PHONE CONVERSATIONS BETWEEN NOW AND THE NEXT MEETING THAT I WILL NOT -- I WON'T FEEL AS COMPRESSED OR CONSTRAINED FOR ALL THE THINGS THAT WE WANT TO GET TO. I THINK THAT'S JUST A QUESTION OF OUR TIME MANAGEMENT AND I'M IN FAVOR OF USING OUR TIME AS WISELY AS WE CAN BUT I'D LIKE TO LEAVE OPEN FOR NOW THE QUESTION OF HOW MUCH TIME WE NEED AS A SMALL GROUP, WHAT WE THINK WE NEED. >> SO THIS IS SOMETHING THAT CHRISTINE USED TO HELP ME WITH, WE MUST PUBLISH THE AGENDA OF THIS MEETING PUBLICLY BECAUSE IT'S A PUBLIC MEETING AND THAT NEEDS TO BE PUBLISHED BY JANUARY 10, A MONTH BEFORE THE BOARD MEETING. >> THE AGENDA DOESN'T HAVE TO BE PUBLISHED, JUST THE REGISTRY. >> THE AGENDA CAN BE UP TO THE MEETING TIME? >> RIGHT. >> AND WE DO HAVE SOME THINGS WE NEED TO BUILD AROUND IT SO WE CAN HOLD OUT THREE HOURS AND SCHEDULE -- MOVE THE SCHEDULE. THAT WOULD MAKE SENSE. >> I'M NOT SURE THE ORDER THAT WE HAVE. >> I THINK PART OF THE ISSUE OF TIME IS WE WEREN'T SURE WHAT WE HAD TO DO YESTERDAY, BECAUSE WE WEREN'T SURE WHETHER WE WERE GOING TO DO IT AGAIN. I DON'T THINK ANY GROUP GOT THROUGH WITH EVERYTHING THAT'S POTENTIALLY ON THEIR PLATE. BUT I THINK IF WE COMMIT TO DO THIS OVER THE NEXT TWO OR THREE MEETINGS, THEN WE CAN GET A BITE-SIZED PIECE OF OUR PROBLEM FOR A MEETING. WHAT DOES THE LIBRARY NEED TO DO ABOUT RESOURCES FOR THE PUBLIC IN TERMS OF POSITIONS IN CERTAIN TO DO IN TERMS OF HEALTH SERVICE RESEARCH IN CERTAIN POPULATIONS, THOSE MAY BE TWO VERY DIFFERENT QUESTIONS. AND YOU'RE NOT GOING TO GET THEM BOTH RESOLVED THIS YEAR. >> RIGHT. >> BUT YOU MAY GET SOME GUIDANCE IN BOTH OF THEM BY FOCUSING. WE HAVE THE WHOLE PUBLIC INFORMATION POLICY THAT WE DIDN'T TOUCH YESTERDAY, WE BARELY SCRATCHED THE SURFACE OF INDEXING. WE HAVE A BUNCH MORE TO DO IN SMALL GROUP, AND I THINK THE CHALLENGE IS TO -- WITHIN EACH SMALL GROUP DECIDE, YOU KNOW, WHAT YOUR BITE IS IN FEBRUARY AND WHAT YOUR BITE IS AT THE MAY MEETING AND THEN WHAT YOUR BITE IS NEXT SEPTEMBER, AND THEN WE ASK THIS QUESTION AGAIN. >> OKAY. SO WE'RE MAKING DECISIONS FOR THE PERIODS IN THE NEXT FEBRUARY MEETING. >> AND I THINK, YOU KNOW, WE JUST NEED TO DECIDE HOW MUCH WE CAN GET DONE IN 75 MINUTES AND THEN EVERYBODY CAN REPORT THAT BACK IN THE SAME FORMAT. BUT WITH A CLEAR UNDERSTANDING OF HOW EACH GROUP DYNAMIC WORKS I THINK WE CAN SHAPE THAT TIME MORE EFFECTIVELY. >> OKAY. >> YEAH, THIS IS AN EXPERIMENT. >> YEP. >> WE WENT INTO IT KIND OF A SESSION WITHOUT QUESTIONS, HIGH LEVEL OF IDENTIFIERS, AND (INAUDIBLE) MOVING FORWARD WITH THESE KIND OF ACTIVITIES, FOR DALE'S COMMENTS, THE SCOPE AND LIMITED TIME, WHERE CAN THIS -- MEMBERS OF SUBCOMMITTEES OF THIS BOARD HAVE THE MOST VALUE TO LEADERSHIP AND NLM. THE NOTION IS THERE ARE A CRISP SET OF FOCUSING QUESTIONS THAT& WE RELY ON EXECUTIVES AT NLM TO GIVE THE SCOOPS THAT THEY THEN ADDRESS TO FOLK HAVING AN OPEN SESSION WHERE WE HAD IT. SECONDLY, AS FAR AS METHODOLOGICALLY, IT'S USEFUL TO DO THIS THING AGAIN, LET'S SAY IN A MORE FOCUSED WAY PER DIRECTIVES, GUIDANCE AND QUESTIONS, TO HAVE THINGS STRUCTURED, THE SAME KIND OF MEETING WE HAD, DO A FEEDBACK READOUT SESSION LIKE THIS AND THEN HAVE MAYBE JUST A HALF HOUR AT THE END WHERE WE GET BACK TOGETHER AGAIN TO DEBRIEF AND FOLLOW FOR THE NEXT PLAN, HOMEWORK. >> EXCELLENT SUGGESTION. IF WE HELD THIS TO 75 MINUTES, THE LARGE GROUP SUGGESTS, LAST 30 MINUTES TO GO BACK AND REGROUP, WHERE DO WE GO, THAT WOULD MAKE -- >> FEEDBACK FROM THE WHOLE BOARD. >> THAT'S TERRIFIC. >> ANYBODY ELSE? OKAY. IT'S RIGHT ON TIME. WE ARE BEING SO GOOD. >> THANK YOU VERY MUCH, EVERYONE. A GREAT EXPERIMENT. I'M THE CHIEF EXECUTIVE ENGAGEMENT OFFICER FOR THE "ALL OF US" RESEARCH PLAN. SOME OF YOU MAY KNOW ABOUT IT BUT I'M GOING TO GIVE YOU A HIGH LEVEL OVERVIEW AND TURN IT OVER TO AMANDA TO TALK ABOUT THE INCREDIBLE PARTNERSHIP THAT WE'RE BUILDING WITH THE NATIONAL LIBRARY OF MEDICINE. AS YOU KNOW, OUR PROGRAM MISSION IS CARE FOR ALL OF US. THERE ARE THREE PRIMARY OBJECTIVES TO HELP US ACHIEVE THIS BOLD MISSION. ONE, WE HAVE TO BUILD AND NURTURE TRUSTED RELATIONSHIPS WITH PARTICIPANTS, WE HAVE TO DELIVER VALUABLE RICH RESOURCE OF DATA WHICH WILL BE ACCESSIBLE IN NEW WAYS AND WE HAVE TO CATALYZE A ROBUST ECOSYSTEM OF RESEARCHERS WHO WANT TO USE THE DATA THAT WE COLLECT. NOW, ONE OF THE THINGS THAT I'M MOST PROUD OF IS THAT OUR PROGRAM IS UNPRECEDENTED IN THE CORE VALUES THAT YOU SEE HERE ON THIS SLIDE. YOU KNOW, BUT EVEN WITH THESE CORE VALUES, WE UNDERSTAND HOW MUCH WORK MUST BE DONE TO REGAIN AND BUILD, REBUILD THE TRUST THAT HAS BEEN LOST BY SO MANY BECAUSE OF THE UNFORTUNATE TRANSGRESSIONS THAT HAVE OCCURRED IN PAST RESEARCH. AND WE KNOW FOR THAT VERY REASON AND MANY OTHERS THAT OUR PROGRAM MUST BE DIFFERENT. AND I ACTUALLY SERVED ON THE ADVISORY PANEL BEFORE I JOINED THE TEAM TO HELP CRAFT THESE CORE VALUES, AND THEY ARE INCREDIBLY IMPORTANT TO ME AS I PROMOTE THE PROGRAM AND TRAVEL AROUND THE WORLD TO TELL PEOPLE ABOUT THE PROGRAM. I CERTAINLY WOULDN'T BE ON THE TEAM IF I DIDN'T PERSONALLY BELIEVE IN THE PROMISE, THE BENEFITS AND REALLY OVERALL VALUE PROPOSITION THIS PIVOTAL RESEARCH HOLDS FOR ALL OF US TRULY. PARTICULARLY THOSE COMMUNITIES WHO HAVE BEEN HISTORICALLY UNDERREPRESENTED IN BIOMEDICAL RESEARCH. SO AS YOU MIGHT IMAGINE, BUILDING DATABASE OF ONE MILLION INDIVIDUALS REPRESENTATIVE OF THE TRUE DIVERSITY OF THE UNITED STATES POPULATION, IT'S NOT GOING TO BE EASY. AND IT'S GOING TO REQUIRE A WHOLE LOT OF CREATIVITY AND INNOVATION. AND THAT'S WHY OUR PROGRAM IS TAKING A TRANSFORMATIONAL APPROACH TO ACHIEVE ACHIEVE QUADRUPLE DIVERSITY TO BENEFIT FROM THIS INITIATIVE INCLUDING PEOPLE WHO ARE HEALTHY, SICK, FROM ALL WALKS OF LIFE AND SOCIOECONOMIC BACKGROUNDS, ALL REGION OF THE COUNTRY. WE AIM TO COLLECT DATA FROM SURVEYS, ELECTRONIC HEALTH RECORDS TO BLOOD AND URINE SAMPLES, DATA FROM WEARABLE DEVICES TO REALLY CREATE A RICH AND ROBUST DATASET. WE ALSO HAVE TRANSFORMATIONAL APPROACH TO PARTICIPATION, AND THIS FEEDS DIRECTLY ENTER OUR TRANSFORMATIONAL APPROACH TO PARTICIPATION. OUR PROGRAM IS DIFFERENT IN MANY WAYS FROM TRADITIONAL RESEARCH. MOST IMPORTANTLY, ONE MILLION VOLUNTEERS IN THE PROGRAM, WE WANT THEM TO BE YOUR TRUE PARTNERS, NOT PATIENTS, NOT SUBJECTS. WE WANT THEM TO BE REAL PARTNERS WITH US IN THE RESEARCH PROCESS. AND WE HAD EMPOWERING PARTICIPANTS BY PROVIDING ACCESS TO INFORMATION THAT'S GATHERED OVER THE COURSE OF THE PROGRAM SO THEY CAN USE THIS INFORMATION TO LEARN MORE ABOUT THEIR HEALTH. AND AS OUR PARTNERS THEY WILL BE INVOLVED IN OUR PROGRAM DEVELOPMENT, WHAT DATA WE COLLECT, WHAT LAB ANALYSES WE DO, WHAT RESEARCH IS CONDUCTED AND HOW DATA GETS RETURNED BACK TO THEM. IN FACT, IN JUST A FEW WEEKS WE WILL BE MEETING, HAVING OUR FIRST MEETING WITH PARTICIPANT PARTNERS OVER 35 INDIVIDUALS WHO ARE WOVEN INTO OUR GOVERNANCE ACTIVITIES. WE'RE REALLY EXCITED ABOUT THAT. SO YOU MIGHT ASK WHAT IS THE VALUE OF PARTICIPATING? WELL, PARTICIPANTS ARE THE HEART AND SOUL OF THE PROGRAM. WE'RE ASKING THEM TO DO A LOT. WE'RE HOPEFUL IN RETURN WE'LL PROVIDE AN OPPORTUNITY TO HELP FIGHT DISEASE, GET US TO A TIME TALKING MORE ABOUT PREVENTION THAN CHRONIC DISEASE, AND TO IMPROVE HEALTH FOR FUTURE GENERATIONS. YOU KNOW, THEY WILL HAVE AN OPPORTUNITY TO LEARN ABOUT THEIR OWN HEALTH INCLUDING GENETIC INFORMATION, PERSONALIZED RISK FACTORS, EXPOSURES, AND ALSO WE WANT THEM TO HAVE INCREASINGLY RICH HEALTH RECORDS SO THEY UNDERSTAND MORE ABOUT THEIR OWN HEALTH. AS WE DISCUSS LATER, MANY COMMUNITIES AS YOU KNOW HAVE BEEN EXCLUDED FROM THE BENEFITS OF RESEARCH. MAKING THIS A REALLY IMPORTANT OPPORTUNITY TO ENSURE THAT ALL COMMUNITIES REAP BENEFITS OF ANY SCIENTIFIC DISCOVERIES THAT COME AS A RESULT OF OUR PROGRAM. SO, ON THIS SLIDE WE'VE HIGHLIGHTED OUR ESTABLISHED RESEARCH CENTER WHERE THE DATA LIVES IN A VERY SECURE ENVIRONMENT. WE ALSO HAVE A BIOBANK WHICH IS AT MAYO CLINIC, REPOSITORY FOR PROCESSING, STORING AND SHARING OUR SAMPLES. WE HAVE A PARTICIPANT CENTER THAT RUNS A PORTION OF THE PROGRAM WHERE INDIVIDUALS CAN ENROLL DIRECTLY EITHER MAYBE AT THEIR LOCAL WALGREEN'S OR QUEST DIAGNOSTIC CENTERS AND OTHER APPROVED COMMUNITY LOCATIONS. WE HAVE SOMETHING CALLED A PARTICIPANT TECHNOLOGY SYSTEM CENTER AND THEY RUN THE WEBSITE AND MOBILE APP THAT HELPS TO FACILITATE ENROLLMENT. NOW, OUR HEALTH CARE PROVIDER ORGANIZATIONS, THESE ARE ORGANIZATIONS ACROSS THE NATION, AND THEIR NETWORKS, REGIONAL MEDICAL CENTER, FEDERALLY QUALIFIED HEALTH CARE CENTERS AND V.A., FACILITATING ENROLLMENT OF CURRENT MEMBER AND ACCEPTING PEOPLE OUTSIDE THEIR MEMBERSHIP. FINALLY HAVE COMMUNICATION AND ENGAGEMENT COMPONENT TO SUPPORT MARKETING AND DESIGN WORK ALONG WITH THE COORDINATION OF SUPPORT FROM OUR COMMUNITY ENGAGEMENT PARTNERS LIKE THE NATIONAL NETWORK OF LIBRARIES OF MEDICINE, AND ALL OF THESE GROUPS SERVE AS TRUSTED INTERMEDIARIES AND VALIDATORS FOR OUR PROGRAM. OUR ENGAGEMENT STRATEGY IS THREEHOLD.-FOLD. WE UTILIZE HEALTH CARE PROVIDER INFORMATIONS, USE PARTICIPANT CENTER WHICH AGAIN ARE WAYS THAT WE CAN MEET PEOPLE WHERE THEY ARE IN LOCAL COMMUNITY AND WE USE OUR NIH AND OUR ENGAGEMENT PARTNERS. AND THAT CAN BE COMMUNITY AND FAITH-BASED ORGANIZATIONS, PROVIDER PATIENT ADVOCACY ORGANIZATIONS, NIH INSTITUTES AND CENTERS LIKE NLM. AND SO ONE OF THE THINGS THAT IS VERY -- SORRY. THERE WE GO. THANK YOU. ONE OF THE THINGS THAT MOST PEOPLE ASK US ABOUT, ALMOST ALWAYS, WHEN THEY ASK ABOUT OUR PROGRAM IS OUR -- HOW WE PROTECT AND HOW WE APPROACH PRIVACY AND SECURITY. AND SO THAT'S WHY IT'S SO IMPORTANT FOR ME TO HIGHLIGHT TO YOU THAT SAFEGUARDING OUR PARTICIPANTS' IDENTITY AND DATA TO THE BEST OF OUR ABILITY IS REALLY ONE OF OUR MOST IMPORTANT RESPONSIBILITIES. WE NOW OUR PARTICIPANTS WANT TO UNDERSTAND WHAT DATA WE COLLECT AND HOW WE RETURN TO THEM BUT ABSOLUTELY WANT ASSURANCE THAT THEIR DATA IS BEING PROTECTED TO THE HIGHEST STANDARDS. THAT'S WHY FROM A VERY BEGINNING OF THIS PROGRAM WE'VE IMPLEMENTED PRIVACY AND SECURITY PRINCIPLES TO HELP ENSURE THE DATA IS AS SAFE AS WE CAN MAKE IT. WE ALL KNOW IN THIS WORLD WE LIVE IN UNFORTUNATELY WE CAN'T BE 100% CERTAIN THAT IT WILL BE PROTECTED, BUT WE ARE DOING THE BEST WE POSSIBLY CAN AND HAVE A TEAM OF EXPERTS THAT ARE DOING MANY THINGS TO ENSURE THAT THE DATA IS SAFEGUARDED AND PROTECTED. THIS SLIDE, YOU CAN SEE OUR CURRENT CONSORTIUM MEMBERS. I SHOW THIS SO YOU CAN REALLY SEE THE MANY TRUSTED BRANDS BEHIND OUR PROGRAM. BUT THE NEXT SLIDE IS THE ONE THAT I'M REALLY PARTIAL TO, YOU MAY THINK I'M BIASED, BUT IT OUTLINES THE VALUED COMMUNITY AND PROVIDER ENGAGEMENT PARTNERS WHO ARE ABSOLUTELY VITAL TO OUR EFFORTS TO BRINGING ALL OF US TO COMMUNITIES ACROSS THE UNITED STATES. WE HAVE MORE THAN 30 FUNDED COMMUNITY AND PROVIDER ORGANIZATIONS PART OF OUR NETWORK DOING A VARIETY OF ACTIVITIES TO INCREASE AWARENESS AND ENGAGEMENT OF OUR PROGRAM. SOME OF OUR PARTNERS ARE IN THIS ROOM. NATIONAL MINORITY QUALITY FORUM IS A PARTNER. WE HAVE OVER 40 ADDITIONAL NON-FUNDED PARTNERS WHO ARE WILLING TO INCREASE AWARENESS ABOUT OUR PROGRAM AND WE'RE NOT DONE YET. WE'RE JUST GETTING STARTED. AND INDEED OUR GOAL IS TO BLANKET THE NATION WITH RESPECTED ORGANIZATIONS WHO CAN MEET POTENTIAL PARTICIPANTS WHERE THEY ARE AND SERVE AS INCREDIBLY VALUED TRUSTED AMBASSADOR FOR THE PROGRAM AND NO DOUBT WE ARE EXTREMELY PROUD TO HAVE NLM AS AN AMAZING PARTNER. CERTAINLY WORKING WITH PATTY AND AMANDA HAS BEEN FANTASTIC. YOU CAN SEE THE NLM LOGO ON THE FOURTH LINE, COLUMN NEXT TO THE LAST. IT'S SMALL THERE BUT I CAN ASSURE YOU THANKS TO THE GREAT WORK OF AMANDA AND HER TEAM, THE CONTRIBUTIONS TO DATE HAVE BEEN GIGANTIC. AND YOU'LL HEAR A LITTLE BIT -- YOU'LL HEAR A LOT MORE ABOUT THAT FROM AMANDA. I WANT TO GIVE YOU A BRIEF OVERVIEW OF OVERARCHING GOALS, TO HIGHLIGHT PUBLIC LIBRARIES AS A RESOURCE, PARTICULARLY IMPORTANT FOR THOSE INDIVIDUALS IN OUR PROGRAM WHO ARE IMPACTED BY DIGITAL DIVIDE. WE WANT TO EQUIP WITH INFORMATION ABOUT OUR PROGRAM TO SHARE WITHIN THEIR LOCAL COMMUNITIES, WE WANT TO ASSESS THE POTENTIAL IMPACT OF LIBRARIES ON PARTICIPANT ENROLLMENT AND REESSENTIAL AND WANT TO ESTABLISH ONLINE PLATFORM FOR EDUCATION AND TRAINING ABOUT THE "ALL OF US" RESEARCH PROGRAM AND PRECISION MEDICINE IN GENERAL. WITH RESOURCES FOR THE PUBLIC, HEALTH PROFESSIONALS, LIBRARIANS AND RESEARCHERS. SO THE LAST SLIDE I WILL SHARE BASICALLY GIVES YOU A HIGH LEVEL OVERVIEW OF THE THREE MAIN COMPONENTS OF OUR PARTNERSHIP. THAT'S COMMUNITY EDUCATION, COMMUNITY ENGAGEMENT AND THEN THE "ALL OF US" LEARNING PLATFORM. AND WITH THIS HIGH LEVEL OVERVIEW IT IS NOW MY PLEASURE TO TURN THE PRESENTATION OVER TO MY ESTEEMED COLLEAGUE, AMANDA WILSON, TO SHARE IN MORE DEPTH INFORMATION ABOUT OUR GREAT PARTNERSHIP. >> THANK YOU, DARA. FOR THE NEXT FEW MOMENTS I AM GOING TO DO A DEEP DIVE INTO SOMETHING WE'RE CALLING THE NNLM ALL OF US NATIONAL PROGRAM. THE THREE COMPONENTS THAT DARA DESCRIBED ON THIS SLIDE MAKE UP THAT PROGRAM, AND IT'S CARRIED OUT BY TWO CENTERS WITHIN THE NETWORK. ONE IS FOR COMMUNITY ENGAGEMENT, THE OTHER IS FOR TRAINING AND EDUCATION. WHAT'S REALLY EXCITING ABOUT THIS PARTNERSHIP IS THAT WE'RE ABLE TO BUILD IN THE WORK, BASED ON OUR ROBUST EXISTING NETWORK. AND ALSO THE STAFF AND PROGRAMS HERE IN THE LIBRARY. CURRENTLY NNLM COMPRISES 7,000 MEMBER ORGANIZATIONS THROUGHOUT THE COUNTRY, OF THOSE THE LARGEST MEMBER GROUPS ARE PUBLIC LIBRARIES, THAT'S ABOUT 1700 OF OUR MEMBERS. HEALTH SCIENCES LIBRARIES, ACADEMIC LIBRARIES AND HOSPITAL LIBRARIES. THE TWO CENTERS OF THE NATIONAL PROGRAM ARE IN THE GREATER MIDWEST REGION, COMMUNITY ENGAGEMENT AND MIDDLE ATLANTIC, TRAINING AND EDUCATION. IN TERMS OF HOW WE'RE ORGANIZED, OUR NNLM NATIONAL PROGRAM CENTERS WORK WITH NLM STAFF AND WITH THE NETWORK TO CARRY OUT THEIR GOALS. ON LEFT COMMUNITY ENGAGEMENT CENTER HAS A CONTACT AT EACH ONE OF THE REGIONS, 100% DEDICATED TO THIS INITIATIVE. THAT CREATES A TEAM OF TWO STAFF, WITHIN EACH OF THE EIGHT REGIONS FOCUSED ON CONSUMER HEALTH INFORMATION. AS WE BRING ON NEW PARTNERS WE'RE DEVELOPING A SUBGROUP THAT WE'RE CALLING THE NNLM "ALL OF US" COMMUNITY ENGAGEMENT NETWORK. THIS COMMUNITY ENGAGEMENT NETWORK CONSISTS OF NNLM MEMBERS WHO SUPPORT, PROMOTE, LEAD "ALL OF US" IN LIBRARIES. ON THE RIGHT YOU'LL SEE TRAINING AND EDUCATION CENTER. THIS OPERATION IS A CENTRAL POINT FOR TRAINING, ACTIVITIES FOR AND ABOUT THE "ALL OF US" RESEARCH PROGRAM, AND LIKE OUR COMMUNITY ENGAGEMENT CENTER THERE ARE TWO PARTS TO THIS UNIT. FIRST, ENGAGING "ALL OF US" PARTICIPANTS THROUGH EDUCATIONAL ACTIVITIES, WHICH ARE CENTERED IN LIBRARIES. FOR THIS THERE'S A PARTICIPANT ENGAGEMENT LEAD LOCATED AT THE CENTER, AND SECONDLY THE TRAINING AND EDUCATION CENTERS OPERATING THE "ALL OF US" LEARNING PLATFORM, SO THIS IS A HIGH LEVEL OVERVIEW OF OUR STRUCTURE, WE'RE GOING TO TAKE A DEEP DIVE IN CURRENT ACTIVITIES STARTING WITH COMMUNITY ENGAGEMENT. THE NNLM "ALL OF US" COMMUNITY ENGAGEMENT NETWORK, THE SUBSET OF OUR MEMBERS THAT SUPPORTS, PROMOTES, AND LEADS ENGAGEMENT ACTIVITIES FOR "ALL OF US" IN LIBRARIES, THIS NETWORK ADDRESSES COMMUNITY ENGAGEMENT AND AREAS OF PARTNERSHIP. FOR THIS YEARS'S CAPACITY CAPACITY BUILDING WE'RE LOOKING AT TRAINING 200 STAFF AND USING CONSUMER RESOURCES, THE GOAL TO LEAVE THEM KNOWLEDGEABLE ENOUGH TO PROVIDE HEALTH LITERACY IN "ALL OF US" PROGRAMMING FOR THEIR COMMUNITIES. SECOND GOAL TO GET HEALTH SCIENCES LIBRARIES AND PUBLIC LIBRARIES EXCITED ABOUT THE "ALL OF US" RESEARCH PROGRAM. WE AIM TO DO THIS THROUGH MULTI-FACETED COMMUNICATION, AND SUPPORTING HEALTH FOCUSED COLLABORATIONS IN COMMUNITIES, PROVIDING SEED FUNDING FOR PROJECTS, AND LEVERAGING PARTNERSHIPS WITH NATIONAL LIBRARY ASSOCIATIONS. I HOPE YOU'LL NOTE THESE ACTIVITIES ARE ALL ALREADY ACTIVITIES THAT THE NETWORK DOES, WE'RE JUST ABLE TO ADD "ALL OF US" AWARENESS AND INFORMATION ONTO THOSE ACTIVITIES. FOR THE THIRD GOAL WE'RE TAKING THE LEAD FROM "ALL OF US," ALL OF OUR ACTIVITIES AND GOALS ONE AND TWO WE HOPE WILL HAVE COMMUNITIES PRIMED FOR LAUNCH EVENTS THAT MIGHT HAPPEN IN THEIR REGIONS. DARA CAN PROVIDE MORE DETAILS ABOUT REGIONAL CAMPAIGNS BUT BASICALLY THOSE CAMPAIGNS ARE AIMED TO CONNECT "ALL OF US" CONTORTA MEMBERS IN AN AREA, HEALTH CARE PROVIDER ORGANIZATIONS, COMMUNITY PARTNERS AND OTHERS TO SUPPORT COORDINATED ROLLOUT. LIBRARY PARTNERS AS KEY COMMUNITY INSTITUTIONS WILL BE PART OF THIS TO SUPPORT HEALTH LITERACY AND "ALL OF US" AWARENESS. AS I'VE ALREADY MENTIONED PARTNERSHIPS ARE ESSENTIAL TO THE NETWORK'S OPERATIONS AND CRITICAL TO THIS NEW INITIATIVE. THE PUBLIC LIBRARY ASSOCIATION HAS OVER 9,000 MEMBERS FROM ACROSS THE COUNTRY WHO WORK IN AND SUPPORT PUBLIC LIBRARIES. GREATER MIDWEST REGION HAS LED RENEWED PARTNERSHIP WITH PLA. COLLABORATIVE SUMMER LIBRARY PROGRAM, FOLKS WHO DETERMINE THE ANNUAL SUMMER READING THEMES EVERY YEAR, THEY REACH 16,000 PUBLIC LIBRARY LOCATIONS ACROSS THE COUNTRY. SUMMER READING ACTIVITIES TOUCH CHILDREN, TEENS, FAMILIES AND ADULTS AND THEY ARE SOME OF THE MOST POPULAR ACTIVITIES IN LIBRARIES. OUR MIDDLE ATLANTIC REGION IS LEADING THIS PARTNERSHIP FORWARD, ENSURING NLM AND NNLM ARE REPRESENTED IN EACH YEAR'S PROGRAMMING MANUAL THAT PUBLIC LIBRARIES RECEIVE. SO FOR OUR WORK WITH BOTH OF THESE PROGRAMS, PLA AND COLLABORATIVE SUMMER LIBRARY PROGRAM WE'RE EMBEDDING "ALL OF US" AWARENESS, TRAINING OPPORTUNITIES AND PROGRAMMING IDEAS ABOUT NNLM AND "ALL OF US." NOW BUSY PUBLIC LIBRARY STAFF WHO MIGHT NOT KNOW ARE GETTING MATERIALS DELIVERED TO THEIR OFFICES OR TO THEIR IN-BOX FROM ORGANIZATIONS THEY TRUST AND TURN TO IN THEIR DAY-TO-DAY WORK. THIS IS AMAZING. IT'S REALLY EXCELLENT. JUST YESTERDAY WE MET WITH THE ASSOCIATION FOR RURAL AND SMALL LIBRARIES, THIS IS A GROUP OF LIBRARIES WHO REPRESENT COMMUNITIES OF 125 PEOPLE, UP TO 3,000 OR THE SINGLE THOUSANDS. SO WE MET WITH THEM TO DISCUSS A PARTNERSHIP. THEY WANT TO WORK MORE CLOSELY WITH NATIONAL ASSOCIATIONS AND THEY ARE VERY EXCITED TO MOVE FORWARD. THIS WILL BE A GREAT WAY FOR US TO TAILOR OUR RESOURCES AND PROGRAMS FOR RURAL LIBRARIES. SOUTHEASTERN ATLANTIC REGION MADE INROADS WITH THE LIBRARY COUNCIL, ANOTHER GROUP THEY TURN TO AND WE WANT TO TOUCH. WITHIN THE "ALL OF US" WORLD, WE'RE PARTNERING WITH OTHER ORGANIZATIONS WHERE OUR PROGRAMS CAN BE COORDINATED. FOR EXAMPLE, THE DELTA RESEARCH AND EDUCATION FOUNDATION RESEARCH MATTERS FOR ALL OF US PROGRAM IS CREATING COMMUNITY HEALTH FAIRS TARGETED AT AFRICAN-AMERICAN COMMUNITY. WE WORK WITH THEM TO HAVE LIBRARIES EXHIBIT OR BE HOST SITES. WE'VE HAD HEALTH CARE PROVIDER ORGANIZATIONS REACH OUT, ONE EXAMPLE IS "ALL OF US" NEW ENGLAND, WANTS TO WORK WITH OUR NEW ENGLAND REGION TO CONNECT TO HOSPITAL AND FAMILY LIBRARIES WITH THE WORKS THEY ARE DOING. THAT CONVERSATION IS JUST STARTING. OUR COMMUNITY ENGAGEMENT CENTERS ALSO PARTNER WITH THE "ALL OF US" JOURNEY, IF YOU DON'T KNOW WHAT IS THAT, YOU'VE SEEN IT NOW. THE JOURNEY IS "ALL OF US" RESEARCH PROGRAM TRAVELING EDUCATIONAL EXPERIENCE THAT BRINGS THE PROGRAM TO COMMUNITIES ACROSS THE COUNTRY, WORKING WITH THE JOURNEY THE NETWORK'S COMMUNITY ENGAGEMENT CENTER I ENGAGEMENT CENTER IDENTIFIES PARTNERS. SO SINCE JUNE WE'VE HAD 15 LIBRARY VOLUNTEERS FROM IDAHO, MISSOURI, UTAH, AND NEW MEXICO, AND WYOMING. WE'VE HAD TWO LIBRARIES, ONE IN HAILEY, IDAHO, ONE IN ALBUQUERQUE, NEW MEXICO, REQUEST TO HOST A JOURNEY STOP, SHOWING US THE WAY WITH THIS PARTNERSHIP. OTHER SPECIFIC EXAMPLES OF OUR CURRENT WORK INCLUDE THE FOLLOWING. TRAINING OPPORTUNITIES AND CONSULTATIONS COME IN THE FORM OF SITE VISITS BY STAFF TO HELP PARTNERS, WEBINARS, CONFERENCE PRESENTATIONS AND WORKSHOPS. FOR EXAMPLE, OUR PACIFIC NORTHWEST REGION PRESENTED IN JUNE TO THE TRIBAL COLLEGE LIBRARIANS INSTITUTE. NNLM HAS AND IS MAKING AVAILABLE FUNDING OPPORTUNITIES FOR PROJECTS CENTERED IN LIBRARIES THAT ADVANCES TOWARDS THE BLANKETING THE NATION GOAL YOU HEARD DARA REFERENCE. THEY INCLUDE THINGS LIKE HEALTH INFORMATION, TECHNOLOGY KIOSKS IN RURAL LIBRARIES, CITIZEN SCIENCE PROJECTS, WE HAVE ONE UNDERWAY AND WE HAVE ONE IN THE PLANNING STAGES NOW. POP-UP LIBRARIES AND LARGER MAPS, EVERYBODY SAW WATCH AND LEARN LAST NIGHT AT THE GALA, EXPANDING TO PENNSYLVANIA AND HOPEFULLY OTHER COMMUNITIES AS THEY ARE INTERESTED. AND ALSO ENHANCING EXISTING PROGRAMS SUCH AS WOMEN'S HEALTH WEDNESDAYS WHICH IS HELD AT CHICAGO PUBLIC LIBRARY, FUNDING SUPPORT FOR THAT AS WELL AS EXPANDING BE WELL AT NPL, THAT'S NASHVILLE PUBLIC LIBRARIES HEALTH INITIATIVE, SOUTHEASTERN ATLANTIC REGION. COMMUNITY CONNECTIONS ARE FACILITATED THROUGH VISITS TO STATE LIBRARIES. WE'VE BEEN TO UTAH AND ARIZONA RECENTLY. AND WE'RE ALSO INVOLVING LOCAL COMMUNITY GROUPS WHO HAVE AN INTEREST IN DISSEMINATING HEALTH INFORMATION. WE STARTED RELATIONSHIPS WITH GROUPS LIKE TRICITIES COMMUNITY HEALTH, PASCO, WASHINGTON, IN OUR PACIFIC NORTHWEST REGION. KC CARE CENTER IN KANSAS CITY, UTAH EDUCATION NETWORK, BOTH IN MID-CONTINENTAL REGION. THESE TWO LIBRARIES ARE OUR FIRST PUBLIC LIBRARY PARTNERS WITH THE NNLM "ALL OF US" NATIONAL PROGRAM. THEY SHOW TWO WAYS OF HOW LIBRARIES ARE TACKLING CAPACITY BUILDING AND COMMUNITY ENGAGEMENT. SO ALBUQUERQUE PUBLIC LIBRARY -- I'M SORRY THE PUBLIC LIBRARY ALBUQUERQUE AND THE COUNTY HIRED A TRAINING EDUCATOR TO TAKE THE LEAD FOR HEALTH EDUCATION AND LIBRARY STAFF TRAINING THROUGHOUT ALL SEVEN OF THEIR -- I'M SORRY, THROUGHOUT THEIR ENTIRE BRANCHES, THEY HAVE MORE THAN SEVEN. THEY PROVIDED SO FAR TRAINING FOR LIBRARY STAFF AROUND PubMed, PROGRAMMING FOR THEIR COMMUNITIES SUCH AS BEYOND HEALTH RECIPES, BEST WAYS TO PROTECT YOUR BONES AND JOINTS AND HAVE GOTTEN RESPONSES FROM 79 COMMUNITY MEMBERS SO FAR ABOUT HEALTH LITERACY CHALLENGES THAT THEY ARE FACING. WHAT WAS EXCITING ABOUT ALBUQUERQUE PUBLIC LIBRARIES, THEY ARE ALREADY FOCUSED ON REACHING THEIR HOMELESS POPULATION, AND THEIR SENIOR POPULATIONS. THESE ARE TWO POPULATIONS THAT ARE UNDERREPRESENTED IN BIOMEDICAL RESEARCH, SO REALLY ALIGNS VERY NICELY WITH THE GOALS OF THE "ALL OF US" RESEARCH PROGRAM AND WHO WE'RE TRYING TO REACH. FOR DURHAM COUNTY PUBLIC LIBRARY CLOSER TO HOME IN BETHESDA, THEY HAVE A DIFFERENT APPROACH. THEY ARE PARTNERING WITH EXISTING NNLM DUKE MEDICAL CENTER LIBRARY TO PROVIDE ALL OF THEIR HEALTH INFORMATION AND HEALTH LITERACY TRAINING, AND THEIR ENGAGEMENT IS EXCITING TO ME. SO THEY ARE ENHANCING THEIR COLLECTION, BOTH WITHIN THEIR SEVEN BRANCHES AND ALSO ON THEIR BOOKMOBILE, AN "ALL OF US" COLLECTION OF MATERIALS RELATED TO HEALTH LITERACY AND TOPICS IN THE LIBRARIES AND IN THEIR BOOKMOBILES, DOING MOBILE OUTREACH AND HAVE A MOBILE TECHNOLOGY UNIT WHICH THEY WILL BRAND WITH "ALL OF US" AND NNLM BRANDING PROVIDING TECHNOLOGY AND INTERNET ACCESS. WHILE THE BOOKMOBILE IS CIRCULATING WITH COLLECTIONS, MOBILE TECHNOLOGY UNIT IS CIRCULATING WITH LAP TOPS, AND TRAINING ON HOW TO USE COMPUTERS OR HOW TO FIND INFORMATION ONLINE. THAT UNIT IS ALSO CIRCULATING AROUND DURHAM COUNTY. AND NOW WILL BE ALSO PROMOTING AND USING NLM AND "ALL OF US" MATERIALS TO DO SOME TRAINING FOR THEIR COMMUNITIES. SO THAT WAS A BRIEF OVERVIEW OF OUR COMMUNITY ENGAGEMENT CENTER. NOW I WANT TO MOVE TO THE RIGHT-HAND SIDE OF THE CHART, AND TALK ABOUT ACTIVITIES UNDER THE TRAINING AND EDUCATION CENTER, WHAT YOU'LL HEAR ME CALL THE TEC. THE TEC ADDRESSES THE COMMUNITY ENGAGEMENT AND LEARNING PLATFORM AREAS OF THE NLM PARTNERSHIP WITH "ALL OF US." ONE FOCUS AREA OF THE TEC IS ADDRESSING ENGAGEMENT BY PROVIDING EDUCATION FOR "ALL OF US" PARTICIPANTS. THE TEC'S PARTICIPANT ENGAGEMENT LEAD IS TASKED WITH BRINGING EXISTING STRENGTH IN THE AREAS NOTED ON THE SLIDE TO THE "ALL OF US" RESEARCH PROGRAM'S CONVERSATIONS AND EFFORTS AROUND COMMUNITY ENGAGEMENT. THE REAL STRENGTH HERE IS THAT OUR NETWORK -- ENGAGEMENT LEAD BRINGS THE KNOWLEDGE BASE OF THE ENTIRE NETWORK WHICH AGAIN INCLUDES ACADEMIC, HEALTH SCIENCES, PUBLIC HOSPITAL LIBRARIES, AS WELL AS COMMUNITY AND FAITH-BASED ORGANIZATIONS, PUBLIC HELTH DEPARTMENTS, HEALTH ASSOCIATIONS AND EVEN K-12 SCHOOLS. THAT'S NOT TO MENTION EXPERTISE AND EXPERIENCE REPRESENTED RIGHT HERE AT NLM. ONE OF THE AREAS OF COLLABORATION BETWEEN OUR TRAINING AND EDUCATION CENTER AND OUR COMMUNITY ENGAGEMENT CENTER IS THROUGH RECOMMENDED SCHEDULE OF PROGRAMMING IDEAS FOR LIBRARIES. BEGINNING IN NOVEMBER 2018 2018 NNLM WILL RECOMMEND TWO TO THREE ACTIVITIES THAT CORRESPOND WITH OBSERVANCES, INCREASING AWARENESS ABOUT A CERTAIN HEALTH TOPIC. WE'LL ADD TO FOUNDATIONAL ACTIVITIES THOSE THAT ALIGN WITH THE PRIORITY AREAS IDENTIFIED BY THE "ALL OF US" RESEARCH PROGRAM. OTHER WAYS ENGAGEMENT LEAD WILL FACILITATE PARTNERSHIP BETWEEN LIBRARIES AND THE "ALL OF US" RESEARCH PROGRAM, INCLUDE PROVIDING "ALL OF US" RESEARCH PROGRAM TRAINING FOR LIBRARY STAFF, DEVELOPING "ALL OF US" ENGAGEMENT RESOURCES FOR PARTICIPANTS, THAT ARE APPROPRIATE FOR USE IN DISTRIBUTION IN LIBRARIES, FACILITATING PARTNERSHIPS FOR PROVIDING HEALTH AND WELLNESS PROGRAMMING, SO CONNECTING CONSORTIA MEMBERS TO LIBRARIES TO HELP ENHANCE THEIR HEALTH PROGRAMMING AND CONVERSATIONS IN THEIR COMMUNITIES AND ALSO CONTRIBUTING TO OUR PARTNERSHIPS WITH NATIONAL LIBRARY ASSOCIATIONS. THE SECOND COMPONENT OF THE TRAINING AND EDUCATION CENTER IS THE LEARNING PLATFORM WHICH IS MADE POSSIBLE BY THE MIDWEST AND GREATER ATLANTIC REGION, TRAINING ABOUT THE "ALL OF US" RESOURCE PROGRAM WITH RESOURCES FOR THE PUBLIC, AND MEMBERS. THE PLAT FORM HAS THREE MAIN COMPONENTS, LEARNING MANAGEMENT SYSTEM, USING OPEN SOURCE SOFTWARE NOODLE, REPOSITORY TO MANAGE AND ORGANIZE LEARNING OBJECTS, DRUPAL WEBSITE WHICH SERVES AS PORTAL TO CONCEPT HOUSE AND DISSEMINATED BY THE PLATFORM. THIS PLATFORM WILL BE AN EXTENSION AND LIVING RESOURCE FOR MANY USERS, THROUGHOUT THE LENGTH OF THE "ALL OF US" RESEARCH PROGRAM IT WILL CONTINUE TO BECOME MORE ROBUST, CONTENT WILL BE CREATED FOR TARGET AUDIENCES AND READING LEVELS, 508 COMPLIANT, AS REQUIRED CONTENT WILL BE APPROVED BY THE INSTITUTIONAL REVIEW BOARD AND ALIGN WITH STANDARDS. THIS SLIDE IS THE BUSINESS REQUIREMENTS FOR OUR TRAINING PLATFORM. LET ME GIVE YOU A MOMENT TO GET FAMILIAR WITH IT. WE MADE SOME GREAT PROGRESS WITH THE TEC OVER THE PAST NINE MONTHS OR SO. PHASE 1, WE IMPLEMENTED MOODLE PLATFORM AND OUR FIRST COURSE INTRODUCTORY TRAINING FOR "ALL OF US" CONSORTIA MEMBERS HAS BEEN MIGRATED TO MOODLE, PRESENTED TO THE "ALL OF US" SENIOR STAFF. WE'RE CURRENTLY IN PHASE 2. WE'RE PLANNING LAUNCH OF THE PLATFORM AND THE CONSORTIA MEMBER TRAINING TO ENTIRE "ALL OF US" COMMUNITY. WE'RE ALSO WORKING ON A COURSE ON RESEARCHER ETHICS, AND ON EDUCATIONAL MATERIALS FOR WHEN THE PROGRAM STARTS RETURNING GENOMIC RESULTS TO PARTICIPANTS, CURRENTLY PLANNED FOR 2019. WORKING WITH EXISTING NIH RESEARCHER ETHICS TRAINING CONSENT, FOR THE LATTER TEC STAFF WORKING WITH GENETICS HOME REFERENCE STAFF TO ENSURE WE'RE LEVERAGING NLM CONTENT AS AS MUCH AS POSSIBLE. THE THERE ARE A TEAM OF SUBJECT MATTER EXPERTS FROM THE CONSORTIUM. LOOKING TO THE FUTURE WE'LL COMPLETE THE RESEARCH ETHICS COURSE AND GENOMIC RESULTS EDUCATIONAL MATERIAL CURRENTLY IN PROCESS, AND WE WILL ESTABLISH PROCESSES TO CONTINUE CONTENT DEVELOPMENT, DELIVERY, MANAGEMENT AND DISSEMINATION BASED ON "ALL OF US" NEEDS AND PRIORITIES. MY LAST MINUTE OR SO I WANT TO SHOW THE PLATFORM AND CONSORTIA MEMBER TRAINING AS IT IS. AS YOU CAN SEE, THIS IS MOODLE. WE TRIED TO INCORPORATE AS MUCH "ALL OF US" CONTENT THAT'S AVAILABLE AS POSSIBLE. WE WANTED TO MAKE THE TRAINING STANDARD TEXT-BASED TO INTERACTIVE, ADD IN PAUSE AND REFLECTION AND KNOWLEDGE CHECKS WHERE STUDENTS CAN APPLY WHAT THEY ARE LEARNING AND REFLECT ON WHAT THEY ARE DOING, WE ALSO HAVE INTERACTIVE SLIDES SO AS YOU CLICK ON EACH ONE OF THE BUTTONS, CONTENT COMES UP. AT THE END, A STUDENT IS ABLE TO EXPORT, PRINT OR SAVE REFLECTIONS TO USE LATER. THANK YOU ALL SO MUCH FOR YOUR TIME. DARA, BEFORE WE TAKE QUESTIONS DID YOU HAVE ANYTHING? OKAY, THANK YOU. [APPLAUSE] >> THANK YOU BOTH FOR A VERY INTERESTING PRESENTATION ON SUCH AN IMPORTANT TOPIC. AND ALSO THANK YOU FOR BEING SO PRECISE ABOUT THE TIME. JAY AND ERIC ARE DISCUSSANTS. >> FIRST OF ALL, WHAT AN IMPRESSIVE PROGRAM AND WHAT A GREAT EXAMPLE OF LEVERAGING NLM RESOURCES AND EXISTING PROGRAMS FOR THIS NEW ENDEAVOR. I AM REALLY IMPRESSED WITH THE WAY YOU BROUGHT IN BOTH TRADITIONAL COMPLIANCES LIBRARIES AS FAR AS THE NETWORK, BUT ALSO THE OUTREACH TO PUBLIC LIBRARIES WHICH IS WHERE MORE MEMBERS OF THE GENERAL PUBLIC COME IN CONTACT. I'LL BE INTERESTED TO SEE HOW YOU BRING IN COMMUNITY AND FAITH-BASED GROUPS THAT ARE NOT FROM THE LIBRARY COMMUNITY AND HOW -- DO YOU HAVE A PLAN FOR SORT OF ORIENTING THEM TO THIS PROVIDING OF INFORMATION AND ANSWERING HEALTH QUESTIONS, IS THAT COVERED IN YOUR TRAINING MATERIALS? >> YES, SO ACTUALLY THE COMMUNITY AND FAITH-BASED GROUPS THAT ARE ALREADY PART OF OUR PARTNERSHIP RECEIVE A FULL ORIENTATION TRAINING FROM OUR PROGRAM. WE HAVE AN AWARD PARTNER, HCM STRATEGISTS, AND THEY ARE HELPING US TO BRING ON JUST AS YOU MENTIONED COMMUNITY AND FAITH-BASED ORGANIZATIONS, AND HELPING US WITH THE ORIENTATION AND TRAINING. OF COURSE, WITH OUR TEAM BEING INVOLVED. ACTUALLY, DR. PUCKREIN IS ONE OF OUR COMMUNITY PARTNER ENGAGEMENT PARTNERS, AND WE STARTED INITIALLY ANNOUNCING THESE PARTNERS BACK IN JULY, WHERE WE HAD FOUR INITIALLY FUNDED PARTNERS, THAT WAS DELTA RESEARCH, SAN FRANCISCO HOSPITAL FOUNDATION, FIFTY FORWARD FOCUSED ON SENIORS IN RURAL POPULATIONS AND NATIONAL ALLIANCE FOR HISPANIC HEALTH. WE STARTED WITH A GROUP OF FOUR COMMUNITY ORGANIZATIONS THAT WE ACTUALLY BROUGHT IN AND PROVIDED INTENSIVE TRAINING, FACE TO FACE, AND HELPED THEM GET TO SPEED ON OUR PROGRAMS, AND THEN THEY BEGAN TO TRAINING THEIR NATIONAL NETWORKS. BUT WE REALIZED EARLY ON FOUR WAS NOT ENOUGH, RIGHT? SO THAT'S WHEN WE BEGAN WORKING ON OUR PROCESS FOR BRINGING IN OTHER PARTNERS. SHORT ANSWER TO YOUR QUESTION, WE NOW NOT ONLY HAVE COMMUNITY PARTNERS BUT WE HAVE FAITH-BASED PARTNERS, WE HAVE, YOU KNOW, SEXUAL AND GENDER MINORITY ORGANIZATIONS ASSOCIATED WITH US AND THEY ALL RECEIVE A CORE TRAINING AND ADDITIONAL TRAINING THROUGH A COMBINATION OF OUR AWARD PARTNER HCM STRATEGISTS AND OUR TEAM. WE'RE GETTING TO THE POINT WE WANT TO ALSO CONNECT THEM TO OUR LIBRARY AS WELL. BUT THEY WON'T BE RECEIVING THE TRAINING FROM THE LIBRARIES. THEY RECEIVE THE CORE TRAININGS FROM US BUT THEY WILL BE DOING WITH THE LIBRARIES, COORDINATING SO YOU I DON'T HEAR FROM MULTIPLE SOURCES, HOPEFULLY A COORDINATED PROGRAM. >> TO ME THIS EXAMPLE OF THE LIBRARY A LITTLE BIT FROM THE TRADITIONAL JUST PROVISION OF INFORMATION OR HERE'S WHERE YOU GO TO FIND INFORMATION ON A PARTICULAR TOPIC AND TO ACTUALLY HELP EDUCATION. THE GREAT THING I KNOW FROM PERSONAL EXPERIENCE, EXHIBITING AND REPRESENTING NLM AND ITS RESOURCES, THAT ANYTIME PATIENTS, CONSUMERS WANT MEETINGS RATHER THAN ROAD MAPS, FINDING ANSWER, SOMETIMES BECAUSE THEY ARE UNDER STRESS, SOMETIMES IT'S BECAUSE THEY JUST WANT THE ANSWER, DON'T WANT TO HAVE TO DO WORK TO GET THE ANSWER, BUT I THINK YOU ESTIMATE THE BALANCE BETWEEN THE TWO, A GREAT PROGRAM. >> YEAH, TO RESONATE DEEPLY WITH THE COMMENTS, I THINK THAT I'VE BEEN FOLLOWING THIS, MANY OF US HAVE, SINCE ERIC DISHMAN STARTED TALKING ABOUT COLLECTING A MILLION PEOPLE TOGETHER TO HELP WITH RESEARCH AND INSIGHT BUILDING. SO MY REACTIONS COMING AT THIS FROM A THOUSAND MILES INTO WHAT'S HAPPENING SINCE THIS HAS BEEN LAUNCHED, ABOUT A YEAR AGO OR SO, YEAR AND A HALF AGO NOW, IN THIS FORMAT OVER THIS BRANDING, AS "ALL OF US," IS THAT I SEE IN YOUR SLIDES, AND THIS IS BASED IN THE CONTEXT OF BEING REALLY EXCITING AND ENTHUSIASTIC ABOUT THE NETWORK AND ENGAGEMENTS WITH FOLKS, BUT SEEMS LIKE A LOT OF FOCUS WAS ON -- AT LEAST FROM PRESENTATIONAL SIDE, HEALTH LITERACY AND ENGAGEMENT, LIBRARY MATERIALS, RESOURCES, AND LESS SO ON WHAT I HAD CONSIDERED TO BE THE CORE REASON FOR THE PROGRAM TO BEGIN WITH, WHICH WAS TO BUILD A BIG DATA SET OF BOTH, YOU KNOW, SPECIAL DATA COLLECTION, URINE, BLOOD AND ENGAGEMENTS AND EXPERIENTIAL INFORMATION, D.H.R DATA WITH PARTICIPATING ORGANIZATIONS, AND THEN ALLOWING PEOPLE INTO THE IDEA OF RESEARCH PROGRAMS AND FUNDING OPPORTUNITIES FOR PEOPLE TO PARTY ON THAT DATA TO MAKE USE TO HELP. SO I WAS CURIOUS TO HEAR IF YOU CAN MAKE COMMENTS ABOUT THE ENERGIES GOING INTO THE DATA COLLECTION SITE, VERSUS LITERACY AND ENGAGEMENT SITE. SECONDLY, THE QUESTION I HAVE TO COMMENT ON, GOING FROM A DREAM THAT LET'S SAY YOU HAVE, ERIC AND OTHERS, TO BUILD THIS PRECISION MEDICINE CENTRIC ORIENTED DATASET, ENGAGEMENT OF CITIZENS, DIVERSITY, DOES THE DREAM THAT COMES FROM THE ORIGIN CARNATION AND THEN THIS REALITY OF THE HARD WORK TO DO THIS INCLUDING ENGAGEMENT WHICH IS VERY IMPORTANT AND LITERACY, GETTING PEOPLE BACK, GIVING BACK IN TERMS OF DATASETS, I WONDER IF WHEN YOU -- IN GOING FROM THE VISION TO REALITY, IT SEEMS YOU HAVE TO SORT OF DO SOME INTENSIVE RECURRENT CHECKS TO SEE HOW IS IT GOING, AM GETTING THE DATA I WANT, IS IT REALLY WORKING. AND UNDERSTAND TO DO AUDITS, UNDERSTAND THE DISTRIBUTIONAL IMPLICATIONS OF YOUR PROCESS, TO UNDERSTAND WHAT DATA IS COMING IN, WHAT ARE THE GAPS, GIVEN WHAT YOU'RE SEEING AS A MIX OF YOUR ATTEMPTS AND REALITIES OF WHO IS COMING BACK, AND SO I'M CURIOUS TO HEAR MORE ABOUT THE DATA COLLECTION SIDE OF THINGS AND HOW YOU'RE CHECKING AND AUDITING TO SEE THAT YOU'RE GOING TO GET A VIABLE DATA SET OVER THE 10-YEAR COURSE THEY EXPECT THE LIFE OF THE PROJECT. >> FIRST OF ALL, I'M SO HAPPY I'M A PHYSICIAN AND DIEING A NO, AND -- DIAGNOSTICICIAN. THAT'S FIRST THING, I CAN DISTILL. YOUR POINT IS A GOOD ONE. WE FOCUS TODAY ON COMMUNITY ENGAGEMENT ASPECTS BUT OUR PROGRAM REMAINS THE -- THE GOALS REMAIN TO BUILD THE RICHEST AND LARGEST DATASET FOR RESEARCHERS TO ACTUALLY BEGIN TO ANALYZE DATA AND DETERMINE WHY THERE ARE HUGE DISPARITIES IN VARIOUS DIFFERENT POPULATIONS, WHAT CONTRIBUTES TO THAT, WHETHER IT'S LIFESTYLE, ENVIRONMENT OR BIOLOGY. YOU MENTION WE LAUNCHED OVER A YEAR AND A HALF AGO. WE ACTUALLY OFFICIALLY LAUNCHED IN MAY OF THIS YEAR. YEAH, MAY. YEAH, MAY OF THIS YEAR. AND TO BE HONEST, I MEAN, YOU'RE NOT ALONE IN THINKING THAT, BUT WHAT HAPPENED WAS PRESIDENT OBAMA ACTUALLY MENTIONED THE PROGRAM BACK IN HIS STATE OF THE UNION ADDRESS IN JANUARY 2015. THEN EVERYBODY STARTED WORKING TOWARDS GETTING EVERYTHING TOGETHER AND THEN ALL OF THOSE PROGRAM COMPONENTS THAT I SHARED WITH YOU CAME TOGETHER ACTUALLY OFFICIALLY IN JULY OF 2016. AND THEN IMAGINE, YOU KNOW, IN THE FEDERAL GOVERNMENT AND OTHER PLACES YOU'RE BRINGING IN MULTIPLE PARTNERS WHO ARE GOING TO HAVE TO WORK TOGETHER AND ALSO WITH OUR FEDERAL GOVERNMENT, SO THEY HAD FROM JULY OF 2016 TILL OUR LAUNCH, YOU KNOW, IN MAY OF 2017, TO ACTUALLY FIGURE OUT HOW TO WORK TOGETHER AND BUILD THE BONES AND INFRASTRUCTURE OF THE PROGRAM. SO WE DID OFFICIALLY JUST LAUNCH IN MAY. BUT YOU'RE ABSOLUTELY RIGHT, OUR GOAL IS TO BUILD THE LARGEST AND RICHEST DATASET, EXCITING TO REPORT THAT WE NOW HAVE OVER 100,000 PEOPLE WHO ARE AT SOME STAGE OF OUR PROGRAM. AND THAT'S MORE THAN MOST RESEARCH STUDIES THAT EXIST NOW, WHAT MAKES IT UNIQUE IS THAT ABOUT 60,000 OF THOSE INDIVIDUALS ARE FULL PARTICIPANTS WHICH MEANS THEY HAVE COMPLETED ALL OF THE SURVEYS THAT ARE AVAILABLE NOW AS WELL AS PROVIDED INFORMATION, AND THE BLOOD AND URINE SPECIMENS THAT ARE BEING COLLECTED AT THE MAYO THAT YOU'RE TALKING ABOUT. AND WE ALSO JUST THIS YEAR, ABOUT LESS THAN A MONTH AGO, JUST LAUNCHED OUR RESEARCH PLATFORM WHICH IS AS YOU DESCRIBE THAT'S PLACE WHERE OUR RESEARCHERS, WHERE WE HOPE WE'RE BUILDING THIS DATA REPOSITORY, SO PEOPLE ARE GOING TO COME AND ACTUALLY ACCESS DATA AND BEGIN TO UNDERSTAND OR, YOU KNOW, HELP US UNDERSTAND SOME MYSTERIES IN HEALTH AND HEALTH CARE SO WE CAN GET TO A PLACE OF PREVENTION. SO YOU'RE 100% RIGHT, THAT IS STILL THE GOAL OF THIS PROGRAM. WE SPOKE ABOUT COMMUNITY ENGAGEMENT BECAUSE WE WON'T GET THE DIVERSITY THAT WE HAVE NOW. WHAT I SHOULD MENTION IN THAT 60,000 WE HAVE ABOUT 70% WHAT WE CALL OF THOSE INDIVIDUALS ARE WHAT WE CALL UNDERREPRESENTED IN BIOMEDICAL RESEARCH, INCLUDING RACIAL AND ETHNIC DIVERSITY AS WELL AS SOCIOECONOMIC STATUS, EDUCATION, SEXUAL AND GENDER MINORITIES AND THINGS OF THAT NATURE. SO BUT WE WON'T GET TO THE POINT OF HAVING THE DATASET IF WE DON'T DO THIS COMMUNITY ENGAGEMENT WORK. SO, THAT'S THE ANSWER TO THE FIRST QUESTION. THE SECOND QUESTION, YOU'RE ACTUALLY RIGHT. THERE IS A DREAM, RIGHT? WE HAVE A DREAM THAT THIS PROGRAM WILL HELP US CHANGE THE FACE OF HEALTH AND HEALTH CARE AS WE KNOW IT. AND WE'RE CONFIDENT THAT THAT DREAM WILL BE A REALITY, ONE DAY. BUT THIS IS A LONGITUDINAL PROGRAM, IT WILL GO OVER TEN YEARS, AND AS WE BUILD VARIOUS DIFFERENT PARTS OF THE PROGRAM WE WILL HAVE TO STOP AND TAKE A LOOK AND SAY, WAIT A MINUTE, WE EXPECTED THIS TO GO A CERTAIN WAY. FOR EXAMPLE, I MENTIONED THE HEALTH CARE PROVIDER ORGANIZATIONS WHICH ARE THE RESEARCH, THE MAJOR RESEARCH INSTITUTIONS OR FEDERALLY QUALIFIED HEALTH CARE CENTERS. RIGHT NOW THEY ARE PROVIDING THE BULK OF THAT 60 TO 100,000 PEOPLE BUT WE'RE TRYING SOMETHING DIFFERENT, WE CALL IT DIRECT VOLUNTEER APPROACH WHERE PEOPLE WITH CAN GO TO THE LOCAL WALGREEN'S OR QUEST DIAGNOSTIC CENTER, NOT EVEN A LOCAL MEDICAL CENTER, TO PROVIDE THEIR URINE AND BLOOD SPECIMENS. WELL, THAT'S KIND OF AN EXPERIMENT. WE DON'T KNOW IF THAT'S GOING TO WORK YET. WE'RE JUST STARTING TO HAVE THESE FACILITIES BEING BUILT OUT ACROSS THE NATION, NOT ALL WALGREEN'S, WE'RE PILOTING VARIOUS ONES. WE'LL HAVE TO SEE IF THAT'S WORKING. EVEN ONCE A DATABASE IS THERE AND THE INFORMATION IS THERE, THE SCIENTISTS AS YOU KNOW IN OUR PROGRAM THEY WILL BE COMING TO THE DATA, RIGHT? AND WE ALSO WANT OUR PROGRAM TO DEMOCRATIZE RESEARCH. WE HAVE TO TEST THAT INFRASTRUCTURE TO MAKE SURE THAT ACTUALLY WORKS. SO YOU'RE ABSOLUTELY RIGHT. THIS IS AN ITERATIVE PROCESS, WE'RE GOING TO HAVE TO TEST AND MAKE SURE OUR VISION, YOU KNOW, IS REALISTIC AND WE'LL TWEAK AND MAKE CHANGES APPROPRIATELY. BUT NOTHING HAS CHANGED AS IT RELATES TO THE DREAM OR THE VISION. IT REALLY IS STILL THE SAME, AND THE COMMUNITY PARTNERSHIPS WE DEVELOP WILL BE SO CRITICALLY IMPORTANT TO HELP US GET THE INDIVIDUALS THAT WE NEED BUT MORE IMPORTANTLY TO KEEP THEM. AND THAT'S A WHOLE RETENTION PIECE. WHAT ARE WE DOING AND HOW ARE WE DOING, THAT'S WHAT WE'RE HOPING OUR PARTNERSHIP WITH THE LIBRARIES AND COMMUNITY PARTNERS WILL KEEP THE DRUM BEAT ROLLING, A LONG ANSWER TO A LONG QUESTION, BUT I HOPE I COVERED IT. >> I WANT TO MAKE A QUICK COMMENT. WE FIRST GOT TOGETHER IN JULY OF 17, SO ABOUT 16 MONTHS OUR MAJOR NNLM ENGAGEMENT HAS HAPPENED. AMAZING. LAUNCH DATE OF ENGAGEMENT OF PEOPLE WAS MAY 6. WE HAVE 100,000 PEOPLE. I HAVE NEVER RECRUITED PARTICIPANTS THAT FAST. DIANA JUST WALKED OUT. BRIEFLY ABOUT THE MARCH EVENT, GENERATING RESEARCH IDEAS, I THINK THAT'S A PIECE THAT THERE'S ALSO AN ENGAGEMENT. >> YEAH, SO WE'RE NOT ONLY ENGAGING PEOPLE AND COMMUNITIES AND INDIVIDUALS. WE'RE ENGAGING RESEARCHERS. JUST IN MARCH OF THIS YEAR WE HAD A RESEARCHER WORKSHOP WHERE WE HAD SCIENTISTS FROM ALL ACROSS THE COUNTRY COME ACTUALLY TO A HOTEL HERE IN BETHESDA, AND TO REALLY, YOU KNOW, KIND OF THINK IN A BLUE SKY WORLD, YOU KNOW, WHAT KINDS OF DATA, WHAT KINDS OF INFORMATION WOULD YOU LIKE TO COLLECT OR DO YOU THINK WE NEED TO BE INCORPORATING AS PROTOCOL ELEMENTS, SO THAT WE CAN MEASURE AND TRACK SOME OF THE -- AND CAPTURE SOME OF THE INFORMATION THAT WE THINK THAT WE'LL NEED OVER TIME. AND IT WAS A TWO OR THREE-DAY -- IT'S BEEN SO LONG, MARCH FOR ME, IT SEEMS LIKE THAT WAS FOREVER. BUT IT WAS A TWO OR THREE-DAY WORKSHOP, AND IT WAS JUST AMAZING WHAT THE SCIENTISTS CAME UP WITH IN TERMS OF -- IT WASN'T JUST SCIENTISTS, SO YOU KNOW. IT WAS SCIENTISTS BUT ALSO WE HAD PARTICIPANT PANTERS IN AND OTHER INDIVIDUALS WHO REALLY WERE KIND OF PUTTING THEIR HEADS TOGETHER AND TRYING TO IDENTIFY WHAT DO WE NEED TO BE COLLECTING, WHAT KIND OF DATA DO WE NEED TO BE COLLECTING NOW SO THAT RESEARCHES CAN HAVE THE INFORMATION THAT THY NEED TO DO THE STUDIES TO MAYBE HELP US GET CLOSER TO UNDERSTANDING SOME OF THE CHRONIC HEALTH CONDITIONS AND DISPARITIES. AND THAT INFORMATION NOW IS BEING DISTILLED IN A WAY BY OUR SCIENTIFIC COMMITTEE TO HELP US UNDERSTAND HOW WE NEED TO ADD NEW PROTOCOL ELEMENTS INTO, YOU KNOW, OUR COLLECTION PROCESS. >> OUR LISTER HILL SET UP, DINA IS ASSISTING USING PROCESSING TO HAVE COORDINATION BETWEEN THE TERMS SO IT'S NOT JUST 10,000 TERMS THAT CAME OUT. >> RIGHT. >> ANYONE ELSE HAVE A QUICK QUESTION? SUZANNE? >> YES. THIS IS JUST SO, SO EXCITING. RETURNING RESEARCH RESULTS, THINKING ABOUT THE OTHER DATA THAT'S THERE, IT LOOKS LIKE YOU'RE DOING SOME GREAT THINGS IN GETTING PEOPLE PREPARED TO ALSO BE ABLE TO INTERPRET THE RESULTS DOWN THE ROAD, HEALTH LITERACY, NUMERACY STUFF. I'M PARTICULARLY INTERESTED IN INFORMATION VISUALIZATION, ALSO THINKING ABOUT AS PEOPLE ARE GOING TO BE INTERPRETING ATTENTION TO GRAPH LITERACY, A NUANCED DIFFERENCE, IT'S GOING TO BE VERY IMPORTANT, JUST EXCITING TO SEE THAT WE REALLY ARE GEARING PEOPLE UP FOR THIS BUT ALSO THINKING LIKE THAT'S GREAT FOR ENGAGING BUT EVENTUALLY YOU WANT TO MAKE SURE THEY WILL BE ABLE TO USE THE INFORMATION THAT IS RETURNED TO THEM. >> YES. THAT IS PRIMARILY OUR APPROACH. I LIKE THIS NUANCE OF GRAPH LITERACY. WE FOCUS ON HEALTH LITERACY, DIGITAL LITERACY, I LIKE ADDING GRAPH LITERACY TO THE POT AS WELL. >> ONE THING I'LL SAY, OUR PROGRAM, WHILE IT'S, YOU KNOW, A GREAT VISION AND A GREAT OPPORTUNITY AND I THINK PERSONALLY IT'S GOING TO BE FABULOUS, AS A PHYSICIAN WHO HAS SEEN, YOU KNOW, THE PRACTICE OF NON-PRECISION MEDICINE, I'M LOOKING FORWARD TO A TIME TO BE MORE PRECISE BUT OUR PROGRAM WITH PRESENT CHALLENGES AS RELATES TO INFORMATION THAT WE RETURN SO WE LIKE TO TALK ABOUT RESPONSIBLE RETURN OF INFORMATION. WE KNOW THAT WE WILL NEED TO MAKE SURE THAT WHATEVER WE'RE RETURNING BACK TO THESE PARTICIPANTS IS IN A USER FRIENDLY WAY SO THEY CAN UNDERSTAND IT. CERTAINLY WE WANT OUR LIBRARIES TO HELP, YOU KNOW, DISTILL THAT BUT WE DON'T WANT TO UPSET OUR PROVIDERS AND OVERBURDEN THEM WITH INFORMATION. HERE, TAKE THIS DATA. WE'RE CLEARLY A RESEARCH PROGRAM AND NOT A HEALTH PROGRAM BUT WE WILL HAVE TO BE VERY, VERY CAREFUL THAT WE ARE PAYING CLOSE ATTENTION TO HOW WE PRESENT THE INFORMATION, HOW WE RETURN IT IN A RESPONSIBLE WAY SO THAT IT'S BOTH BENEFICIAL TO THE PARTICIPANT AND ALSO TO ALL OF THOSE AROUND THEM. AND HELPING THEM -- HAVING THE PARTNERSHIP WITH THE LIBRARY, WITH LITERACY FOR INDIVIDUALS AND INCREASING HEALTH LITERACY WITHIN THE LIBRARY IS AN AMAZING OPPORTUNITY. >> DO YOU HAVE ANY THOUGHT OF OPENING THE EDUCATIONAL RESOURCES TO PEOPLE WHO ARE NOT ENROLLED IN THE "ALL OF US" PROGRAM? BECAUSE MANY PEOPLE ARE GOING TO 23ANDME, ANCESTRY.COM. >> YES, IT IS TO BE OPEN FOR EVERYONE. THERE WILL BE SILOS WHERE A MEMBER SPECIFIC INFORMATION BUT GENERAL EDUCATION PIECE WILL BE OPEN FOR EVERYONE. >> GREAT. THANK YOU SO MUCH. >> THANK YOU, EVERYONE. [APPLAUSE] >> SO, THE LAST PIECE ON OUR AGENDA IS PRESENTATION OF THE REGENTS AWARD. >> SO THIS IS A TEAM EFFORT. THE REGENTS AWARD FOR SCHOLARSHIP TECHNICAL ACHIEVEMENT ESTABLISHED IN 1970 BY THE BOARD OF REGENTS TO RECOGNIZE AND STIMULATE INDEPENDENT CREATIVITY LEADING TO SCHOLARLY OR TECHNICAL ACHIEVE. IN RICH BIOMEDICINE, EMPHASIS ON A NEW PRODUCT OR METHODOLOGY THAT IMPROVES BIOMEDICAL KNOWLEDGE OR SERVICE. THE BOARD CONSIDERS THIS AWARD THE HIGHEST HONOR IT CAN GIVE TO A MEMBER OF THE STAFF. >> I WANT TO POINT OUT THIS IS A COMPETITIVE AWARD. WE RECEIVED MANY NOMINATIONS, REVIEW WAS DONE AT THE STAFF LEVEL. THIS YEAR WE'RE EXCITED TO MAKE TWO PRESENTATIONS. I FIRST WANT TO ASK DR. ROBERT LOGAN TO JOIN ME UP HERE. DR. LOGAN IS A SOCIAL SCIENCE ANALYST, ONE OF THE FIRST PEOPLE I MET HERE IN 2002, NOW RECOGNIZED FOR A NEW BOOK ON CO-- CO-EDITING A BOOK DESIGNED TO PROMOTE HEALTH LITERACY IN THE UNITED STATES AND NATIONALLY, HIS WORK HAS BEEN IMPORTANT TO THE NATIONAL LIBRARY OF MEDICINE IN CONNECTING US WITH JOURNALISTS TO HELP THEM MAKE REASONABLY AND GOOD INTERPRETATIONS OF OUR RESEARCH. SO THANK YOU VERY MUCH AND PLEASE JOIN US OVER HERE. [APPLAUSE] >> THIS IS AN AMAZING AWARD, ONE OF THE PRETTIEST WE GIVE. (INAUDIBLE) >> MY THANKS TO ELLIOTT SEGAL WHO USUALLY IS HERE, BUT HE LIVES ON THE SHORELINE IN NORTH CAROLINA, AND I TAKE IT I DON'T NEED TO FINISH THE REST OF THE SENTENCE. BUT THIS WOULD NOT HAVE BEEN DONE WITHOUT ELLIOTT. NOT WITHOUT BETSY HUMPHREYS WHO HAS A CHAPTER IN THE BOOK AND THE LINDBERGS WHO SUGGESTED YOU NEED TO PUT MORE PRACTICE IN THE BOOK, ALREADY PUBLISHED, PUT IT IN THE NEXT ONE, TWO DAYS LATER THE PUBLISHER ASKED ME TO DO ANOTHER ONE. [APPLAUSE] >> I FEEL BETTER WHEN YOU'RE AT MY SIDE O THAT SIDE. I'D LIKE TO ASK SUSAN SPEAKER TO JOIN US. DR. SPEAKER IS SECOND RECIPIENT THIS YEAR, HISTORIAN WITH THE HISTORY OF MEDICINE DIVISION IN THE DIVISION OF LIBRARY OPERATIONS. SHE'S BEING RECOGNIZED FOR WORK AND OUTSTANDING SCHOLARSHIP IN DOCUMENTING THE HISTORY OF THE NATIONAL NETWORK OF LIBRARIES OF MEDICINE, IN HER BOOK " HISTORICAL OVERVIEW OF THE NATIONAL NETWORK OF LIBRARIES OF MEDICINE 1985 TO 2015." THANK YOU VERY MUCH AND CONGRATULATIONS. [APPLAUSE] >> THANK YOU. [APPLAUSE] >> CONGRATULATIONS, SUSAN AND DR. LOGAN. >> THAT'S A REALLY NICE WAY TO FINISH THE MEETING. ANYONE ELSE HAVE ANY FINAL THOUGHTS? WE LOOK FORWARD TO SEEING OUR CONSULTANTS REALLY ON BOARD. >> YES, WE HOPE, WE HOPE. >> GREAT. MEETING ADJOURNED. SAFE TRAVELS.