>>> GOOD MORNING. I'M CALLING THE MEETING TO ORDER. THIS IS A VERY EXCITING TIME WITH OUR NEW DIRECTOR AND WITH THE NUMBER OF NEW FACES. ADDITIONS TO THE BOARD AND FUTURE ADDITIONS TO THE BOARD. I THINK WE HAVE PEOPLE ON THE PHONE AS WELL. WHAT I'D LIKE TO DO FIRST IS HAVE A ROUND OF INTRODUCTIONS. THE NEW BOARD MEMBERS AND THE CONSULTANTS. SO, IN PERSON, Mrs. JANE BLUMENTHAL THE DIRECTOR OF THE SCIENCE LABORATORY INITIATIVE. WELCOME. CONSULTANT AT THE MOMENT. DR. GARY -- [ INDISCERNIBLE ] >> I'M SORRY. THERE HE IS EXECUTIVE DIRECTOR OF THE NATIONAL MINORITY QUALITY BOARD. DR. MERCY COX, DIRECTOR OF VANDERBILT GENETICS INSTITUTE AT THE UNIVERSITY MEDICAL CENTER AND IF YOU'RE ON THE PHONE, SAY, HI. OR IF YOU'RE ON MUTE, GET OFF MUTE. WE DON'T HAVE HER YET, APPARENTLY. ON THE PHONE ALSO I HOPE IS DR. ERIC HOROWITS, ADAPTIVE SYSTEMS INTERACTIVE GROUP OF MICROSOFT, RESEARCH. ERIC, ARE YOU THERE? >> IT'S 6 A.M. THERE. HE MIGHT BE STILL SLEEPING. >> WE ALSO HAVE THREE NEW EX-OFFICIO MEMBERS DR. RICHARD THOMAS, PRESIDENT SERVICES UNIVERSITY OF HEALTH SCIENCES. WE HAVE COLONEL THOMASICANTLENA, SPECIAL ASSISTANT TO THE AIR FORCE SURGEON GENERAL. WELCOME. DR. CHEN. HE IS A ASSOCIATE DIRECTOR OF READINESS AND HEALTH FOR RESEARCH ADMINISTRATION AND EXTERNAL RESEARCH AFFAIRS. U.S. NAVY BUREAU OF MEDICINE AND SURGERY. SO, HOPEFULLY THEY'LL JOIN US. AND SO, THANK YOU ALL FOR JOINING US AND I THINK WE HAVE AN INTERESTING YEAR AHEAD OF US. WE ARE GOING TO BEGIN WITH A REPORT OF THE OFFICE OF THE SURGEON GENERAL GENERAL PUBLIC HEALTH SERVICE. >> GOOD MORNING EVERYONE, I BRING YOU GREETINGS FROM THE SURGEON GENERAL WHO IS ON LEAVE, JUST HAD A NEWBORN BABY THE FIRST OF SEPTEMBER. SO I'M PROUD -- GOOD MORNING. WE ARE ENJOYING HIS EXCITEMENT. WE HAVEN'T REALLY SEEN THIS MUCH EXCITEMENT AROUND CHILD HEALTH AND PEDIATRICS IN A LONG TIME. WE HAVE BEEN FOCUSED ON ZIKA AND EBOLA AND OTHER THINGS IN PUBLIC HEALTH. SO WE HAVE BEEN VERY BUSY WITH THE SURGEON GENERAL'S AGENDA. THERE HAVE BEEN MANY PUBLIC HEALTH ISSUES HE WANTED TO TAKE ON AS HE ASSUMED OFFICE AND ONE OF THE MOST IMPORTANT THINGS HE WANTED US TO FOCUS ON ARE THOSE THINGS, THE LOW HANGING FRUIT TO MAKE A HUGE IMPACT IN PUBLIC HEALTH IN THE UNITED STATES. LAST YEAR WE DID LAUNCH OUR STEP IT UP CAMPAIGN, WHICH IS BASICALLY LOOKING ATMO WE CAN GET MORE PEOPLE TO MOVE AND SUPPORT OF THE FIRST LADY'S LET'S MOVE CAMPAIGN. WE HAVE MAKING SIGNIFICANT CONTRIBUTIONS TO THE CALL TO ACTION AS WE PUT OUT IN COORDINATION WITH CDC, WALKING AND WALKABLE COMMUNITIES. WE CONTINUE THE STEP IT UP CAMPAIGN WORKING WITH MANY COMMUNITIES TO ENCOURAGE YOUNG STUDENTS AND HIGH SCHOOL AND MIDDLE SCHOOL TO BE MORE ACTIVE AS PUBLIC SCHOOLS HAVE DECREASED THE AMOUNT OF EXERCISE AND FITNESS THAT IS OFFERED AS A PART OF CURRICULUMS. ONE OF THE BIGGEST AREAS OF FOCUS FOR US RIGHT NOW IS YOU MAY HAVE RECEIVED A LETTER FROM THE SURGEON GENERAL, IS OUR ADDICTION CAMPAIGN AND WE ARE HASHTAG, THAT IS TURN THE TIDE. ALL THESE NEW HASHTAGS. SO THE TURN THE TIDE CAMPAIGN IS FOCUSED ON LOOKING AT ADDICTION FROM A DIFFERENT PERSPECTIVE, A TOTAL HEALTH PERSPECTIVE AND HOW WE AS PROVIDERS CAN IMPACT CHANGE IN THE COMMUNITY. AS YOU KNOW, WE HAVE BEEN DEALING WITH A LOT OF ADDICTION AND ESPECIALLY AS IT RELATES TO OVERDOSES RELATED TO OPIOIDS. SO THIS IS FOCUSED ON OPIOID ADDICTION LOOKING AT PRESCRIBING PRACTICES AND TRYING TO EDUCATE HEALTH CARE PROVIDERS AS WELL AS THE COMMUNITY ON THE IMPORTANCE OF APPROPRIATE USE OF OPIOIDS AND HOW TO GET SERVICES FOR INDIVIDUALS WHO ARE ADDICTED TO OPIOIDS. WE DO WANT TO ANNOUNCE THAT 2016 REPORT ON SUBSTANCE USE, ADDICTION AND HEALTH FOCUSING ON PREVENTION, TREATMENT AND RECOVERY; THE SPECIFIC CAMPAIGN SAY PART OF THE LETTER THAT WENT OUT TO EACH OR EVERY LICENSED PRESCRIBER IN THE UNITED STATES. WE DID WORK WITH THE DEA AND MEDICARE AND MEDICAID TO SEND OUT A LETTER TO ALL PROVIDERS. ANYONE IN THIS ROOM GET A LETTER FROM THE SURGEON GENERAL? GREAT. IT'S WORKING. [ LAUGHS ] WE HAVE RECEIVED A LOT OF FEEDBACK ON THE ADDICTIONS CAMPAIGN PRIMARILY LOOKING AT THE FIRST WE LOOK AT THIS FIRST EFFORT TO NOTIFY PROVIDERS OF THEIR RESPONSIBILITY BUT ALSO TO LOOK TAT FROM A SCIENTIFIC BASIS. WE HOPE THAT THE REPORT THAT IS DUE TO COME OUT LATER THIS YEAR WILL FOCUS ON NOT ONLY PREVENTION MEASURES BUT COMMUNITY AND SERVE AS AN EDUCATIONAL COMPONENT FOR INDIVIDUALS WHO ARE ADDICTED TO SUBSTANCES AND PROVIDE SOME PATHWAY FOR THEM TO BE ABLE TO GET ACCESSES TO SERVICES. THERE IS A HUGE SHORTAGE IN THE UNITED STATES OF TREATMENT OPTIONS FOR INDIVIDUALS WHO ARE SUFFERING WITH ADDICTION. THE SURGEON GENERAL HAS BEEN WORKING WITH ALL THE STATE AND LOCAL JURISDICTIONS TO IDENTIFY WHERE THERE ARE OPPORTUNITIES FOR US TO ENGAGE NOT ONLY LOOKING AT OPIOIDS AND PRESCRIBING PRACTICES BUT ALSO LOOKING AT ALTERNATIVES TO OTHER MECHANISMS TO TREAT PAIN AND TO EXECUTE PAIN MANAGEMENT IN A WAY THAT INCLUDES ALTERNATIVE THERAPIES, SUCH AS ACUPUNCTURE WHICH IS VERY AFFECT AND I HAVE MEDITATION AND BIOFEEDBACK AND EXERCISE AS A PART OF THAT INITIATIVE. SURGEON GENERAL GENERAL HAS BEEN VERY ACTIVE IN THE BOTH THE SOCIAL MEDIA, TWEETING OUT TO INDIVIDUALS ACROSS THE UNITED STATES ABOUT THE OPIOID CAMPAIGN AND ALSO APPEARING ON NATIONAL MEDIA TO TALK ABOUT THIS PROBLEM. WHAT WE FOUND IS THAT THE MOST EFFECTIVE MECHANISMS HAVE BEEN THOSE THAT WERE ABLE TO REACH LARGE NUMBERS OF PEOPLE FROM ALL SECTORS OF SOCIETY, NOT JUST PROVIDERS BUT IN EDUCATING THE COMMUNITY. WE HAVE BEEN ABLE TO STIR UP A LOT OF INTEREST SO PATIENTS GOING INTO THEIR PROVIDERS WILL ASK QUESTIONS. WE WANT OUR PATIENTS TO BE INFORMED AND FEEL EMPOWERED TO ASK QUESTIONS ABOUT THE DOSES THEY ARE RECEIVING AND HOW LONG THEY SHOULD BE ON THEM AND WHETHER OR NOT THEY SHOULD DISCONTINUE TO USE THE OPIOIDS AT SOME POINT IN THEIR TREATMENT. THE OTHER SPECIAL EVENT WE ARE FOCUSED ON THIS YEAR WILL BE EMOTIONAL WELL-BEING. THIS CAMPAIGN IS LOOKING AT BEHAVIORAL HEALTH AND AGAIN IN THE PUBLIC HEALTH CONTEXT. HOW DO WE ADDRESS NOT JUST THE MENTAL HEALTH NEEDS OF THE COMMUNITIES WE SERVE ACROSS THE UNITED STATES, BUT HOW DO WE HAVE INDIVIDUALS TO ASSESS THEIR CURRENT HEALTH STATUS? AND WHETHER OR NOT YOU ARE DIAGNOSED WITH A MENTAL ILLNESS OR OTHER DEPRESSIVE DISORDER, DEPRESSION ANXIETY DISORDER, HOW DO WE ADDRESS THAT IN OUR DAILY LIVES? HOW DO WE PROVIDE CHILDREN WITH A SENSE OF WELL-BEING THAT THEY UNDERSTAND WHAT DEPRESSION IS AND KNOW THE SIGNS AND SYMPTOMS AND KNOW HOW TO ENGAGE WITH THEIR PARENTS AND THEIR SCHOOL OFFICIALS TO GET HELP WHEN THEY NEED IT? WE HAVE BEEN WORKING WITH THE CENTERS FOR DISEASE CONTROL AND NIH AND CDC ON A NUMBER OF PREVENTION CAMPAIGNS TO LOOK AT THE AFFECT OF MENTAL ILLNESS FROM A CHRONIC DISEASE MODEL. LOOKING AT CHILDREN VERY EARLY IN LIFE AND IDENTIFYING THOSE FACTORS THAT PREDISPOSE THEM FOR MENTAL ILLNESS LATER IN LIFE, WE HAVE IDENTIFIED SEVERAL STUDIES THAT INDICATE IF WE ARE ABLE TO IDENTIFY THESE CONDITIONS EARLY, WE ARE ABLE TO INTERVENE AT AN EARLIEST POINT IN THE DISEASE AND POTENTIALLY DECREASE THE EXACERBATION OF CONDITIONS. STRESS AND TRAUMA AFFECT EVERYONE DIFFERENTLY AND THE SURGEON GENERAL WANTS TO WORK WITH THE BEST SCIENCE AVAILABLE TO MAKE SURE THAT WE ARE ADDRESSING BEHAVIORAL HEALTH IN A PUBLIC HEALTH CONTEXT AND INTEGRATING INTO PUBLIC HEALTH AND ALSO MAKING SURE THAT WE ARE PROVIDING THE PREVENTIVE MEASURES AT THE CLINICAL CARE POINT AND AS WELL AS IN THE COMMUNITY TO MAKE SURE THAT INDIVIDUALS WHO KNOW WHAT EMOTIONAL WELL-BEING MEANS AND HOW TO GET SERVICES WHEN THEY NEED IT. THE NEXT THING I WANT TO TALK ABOUT THIS MORNING IS WHAT IS IT THAT ENGAGES COMMUNITY MOST WHEN THEY ARE SEEKING ACCESS TO CARE AS IT RELATES TO ZIKA? WE HAVE BEEN VERY MUCH INVOLVED IN THE ZIKA RESPONSE. WE ARE WORKING WITH A NUMBER OF ENTITIES ACROSS THE DEPARTMENT AS WELL AS ACROSS THE GOVERNMENT. THE SURGEON GENERAL IS ACTIVELY INVOLVED WITH NUMEROUS ACTIVITIES RELATED TO THE ZIKA RESPONSE. HE ATTENDED OR LED A DELEGATION TO PUERTO RICO TO BRING AWARENESS TO THE SPREAD OF THE VIRUS ACROSS THE AISLED IN PUERTO RICO. HE MET WITH NUMEROUS OFFICIALS THERE AND HE HELD A PRESS CONFERENCE TO HIGHTEN THE AWARENESS FOR THE NEED FOR COMMUNITY AND PROVIDER EDUCATION. AN INITIAL SURVEY DONE BY THE DEPARTMENT OF PUBLIC HEALTH IN PUERTO RICO IDENTIFIED THAT PROVIDERS LACKED BASIC KNOWLEDGE OF TRANSMISSION MODES, THE IMPORTANCE OF PREVENTION AND ALSO SOME OF THE CHALLENGES IDENTIFIED IN THE PROVIDER SURVEY WHERE ACCESS TO TESTING AND SCREENING RESOURCES. ONE OF THE ONGOING CHALLENGES THAT WE ARE FACING RIGHT NOW IS THE SPREAD OF ZIKA. AS YOU KNOW WE HAVE SEEN NUMEROUS REPORTS OF THE SPREAD IN MIAMI AND SOUTH FLORIDA AND ATLANTA LAST WEEK WE HAY CASE IN UTAH WITH AN ELDERLY GENTLEMAN WHO HAS NOW -- LOOKING INTO MORE DETAILS ABOUT THE MODE OF TRANSMISSION. THIS INDIVIDUAL DIED A COUPLE OF MONTHS AGO AND THEN IN -- IN JUNE, NOW A FAMILY MEMBER WHO WAS CARING FOR HIM HAS CONTRACTED ZIKA. SO THEY ARE LOOKING AT THE FACT THAT THIS IS A NEW MODE OF TRANSMISSION. WE HOPE TO HAVE MORE INFORMATION ABOUT THE INVESTIGATIONAL EPIDEMIOLOGY OF ZIKA IN THIS PARTICULAR CASE. THIS IS A ONE OFF AND WE ARE TAKING IT VERY SERIOUSLY BECAUSE IF THIS IS A NEW MODE OF TRANSMISSION THEN THE MESSAGING AND COMMUNICATION AROUND THE SPREAD OF ZIKA AND HOW THIS VIRUS IS TRANSMITTED NOW NEEDS TO GO BACK TO THE DRAWING BOARD TO LOOK AT OTHER MECHANISMS OF PREVENTION. WE DO HAVE A UNIFIED COMMAND THAT HAS BEEN SUITED UP ON THE AISLED OF PUERTO RICO HHS IS LEADING THIS EFFORT IN COORDINATION WITH FEMA. WE ARE WORKING WITH EPA, VA AND OTHER ENTITIES ACROSS GOVERNMENT. DEPARTMENT OF LABOR IS A MAJOR PLAYER. IDENTIFYING OPPORTUNITIES FOR PUERTO RICO TO BE ABLE TO DO MOSQUITO ABATEMENT, PROVIDER COMMUNITY EDUCATION AND PREPARE FOR THE POTENTIAL OF MICROCEPHALY INCREASING WITH THE NEW BIRTHS THAT ARE POTENTIALLY HAPPENING BETWEEN OCTOBER AND THE BEGINNING OF 2017. SO THIS WILL BE AN ONGOING CONCERN THAT WE WILL HAVE THROUGHOUT THE NEXT COUPLE OF YEARS AS WE KNOW THAT AS CHILDREN DEVELOP THEIR BRAINS ARE AT RISK IF THEY ARE NOT PROPERLY CARED FOR. WE KNOW THAT THIS IS A MAJOR CONCERN AS THE VIRUS SPREAD THROUGH MATERNAL CHILD TRANSMISSION. WE HOPE WE ARE ABLE TO GET BETTER ULTRASOUND CAPABILITIES ON THE AISLED. ALSO HAVING STAFF WHO ARE CAPABLE OF TAKING CARE OF THESE CHILDREN WHO MAY BE BORN WITH MICROCEPHALY AND PROVIDE ONGOING CARE AND TREATMENT FOR THESE INDIVIDUALS AS THEY GROW. BUT MORE IMPORTANTLY, WE ARE LOOKING AT THE INFRASTRUCTURE WITHIN THE ISLAND OF ADDRESSING PUBLIC HEALTH CONCERNS RELATED TO THE SPREAD OF ANY TYPE OF VIRUS SUCH AS ZIKA. AND THEN THE LAST ITEM I WANT TO TALK ABOUT THIS MORNING IS THE EBOLA REPORT. THE PUBLIC HEALTH SERVICE IS VERY ACTIVELY ENGAGED AS ARE OTHER COMPONENT OF THE FEDERAL GOVERNMENT IN THE EBOLA RESPONSE. WE ARE GOING THROUGH THE LESSONS LEARNED FROM THAT EVENT. WE HAVE LEARNED A LOT ABOUT OUR 80 TO RESPOND FROM A COORDINATED EFFORT. THE IMPORTANCE OF COMMUNICATION AND INFRASTRUCTURE ON THE GROUND AS YOU'RE WORKING WITH OTHER COMPONENTS OF NOT ONLY THE UNITED STATES GOVERNMENT ASSETS BUT WORKING IN AN INTERNATIONAL ENGAGEMENT WHERE YOU'RE DEALING WITH MULTIPLE FOREIGN GOVERNMENTS, FOREIGN MILITARIES AS WELL AS WHO AND THE U.N. ONE OF THE MAIN CONCERNS THAT WE HAVE COMING OUT OF THE EBOLA RESPONSE IS THE IMPORTANCE NOT ONLY OF COMMUNICATION BUT COLLABORATION AND BEING ABLE TO VERY RAPIDLY TURN AROUND RESOURCES AND REENGAGE AS NEEDED FOR A VERY HEIGHTENED RESPONSE AS WE DID EBOLA. WE DID A GREAT JOB IN EBOLA. I HAVE TO SAY THAT HAVING BEEN ON THE GROUND THERE FOR THE FIRST WAVE OF DEPLOYMENT, I DO THINK THAT WE HAVE A LOT OF WORK TO DO FROM INFRASTRUCTURE STANDPOINT BUT AS FAR AS THE UNITED STATES IS CONCERNED, IN PREPARING FOR ANOTHER POTENTIAL EBOWL A I'LL STOP THERE AND SEE IF THERE ARE ANY QUESTIONS OR COMMENTS THAT YOU MAY HAVE. >> I'D LIKE TO KNOW MORE ABOUT THE ZIKA ISSUE. D. DID THE GENTLEMAN WHO DIE, DIE FROM THAT OR WAS THAT -- DID HE JUST DIE -- >> THE CASE IN UTAH IS AN ELDERLY GENTLEMAN. THEY DON'T KNOW YET. THERE WERE OTHER HEALTH CONCERNS. OTHER CHRONIC CONDITIONS HE WAS DEALING WITH AS WELL. BUT HE DID HAVE A VERY HIGH LEVEL OF THE ZIKA VIRUS IN HIS BLOODSTREAM. IT WAS A SIGNIFICANTLY HIGHER THAN WHAT HAD BEEN NOTED IN OTHER INDIVIDUALS WHO WERE DIAGNOSED WITH ZIKA. SO THEY ARE LOOKING AT THE VIRAL LOAD AND ALSO LOOKING AT THE POTENTIAL CO-MORBIDITY OF OTHER CHRONIC DISEASES BUT THERE IS ENOUGH, IF THE CHILDREN HAVE OTHER DEVELOPMENTAL DIFFICULTIES THAT'S GOING TO NEED AN ENORMOUS INFRASTRUCTURE TO HANDLE IT. >> YOU'RE RIGHT. AND THAT SUDDEN ONE OF THE MAJOR CONCERNS WE ARE FACING RIGHT NOW IN PUERTO RICO. WE DO ANTICIPATE IF THERE WILL BE INCREASE IN THE NUMBER OF CHILDREN WHO WERE BORN WITHOUT MICROCEPHALY. WHAT WE HAD INITIALLY PLANNED AS IT RELATES TO THE RESPONSE WAS INITIALLY 18-24 MONTH RESPONSE, WHICH THE CLOCK IS ALREADY TICKING. THAT IS NOT GOING TO MEET THE IMMEDIATE NEED NOR WILL IT ANYWHERE NEAR MEET THE LONG TERM NEED. BUT PUERTO RICO DEPARTMENT OF HEALTH PUT IN PLACE A SHORT-TERM INTERIM AND MORE LONG-TERM PLAN WHICH IS YET TO BE FLUSHED OUT. THEY ARE LOOKING AT THESE CHILDREN TO BE TRACKED THROUGH THE SCHOOL AGE YEARS AND THEN BEING ABLE TO MONITOR SO THE GOAL IS TO HOPEFULLY DEVELOP A DATABASE THAT WILL TRACK THESE INDIVIDUALS OVER TIME. NOT ONLY CLINICALLY BUT FROM A SOCIOLOGICAL STANDPOINT TO IDENTIFY WHERE THE DEVELOPMENTAL GAPS ARE. EVEN FOR THOSE CHILDREN WHO WERE NOT NECESSARILY BORN WITH MICROCEPHALY BUT BORN TO A MOTHER WHO WAS INDEED INFECTED WITH ZIKA. THE REGISTRY WE HAVE A LONG WAY TO GO WITH COMPLETING THAT REGISTRY AND BEING ABLE TO HAVE SOLID INFORMATION. ONE OF THE MANY CHALLENGES AS YOU KNOW IN PUERTO RICO IS THE ISLAND IS BASICALLY BANKRUPT. THE HEALTH CARE INFRASTRUCTURE IS IN DISARRAY AND THERE IS A LACK OF RESOURCE FROM THE STANDPOINT OF BEING ABLE TO EVEN HAVE CONCRETE DATA ON MEDICAL RECORDS FROM SOME OF THE OUTLYING AREAS. I DID DO A LOT OF WORK IN PUERTO RICO WITH -- OVER THE LAST 20 YEARS, IN THE HIV REALM AND I WILL TELL YOU THAT WE HAVE COME A LONG WAY BUT WE HAVE A LONG WAY TO GO. ZIKA IS DIFFERENT THAN HIV. HIV YOU NEED THE STABILITY OF THAT VIRUS TO EXIST AND WE ARE LEARNING THAT WITH ZIKA NOT NECESSARILY SO. AND IT SEEMS TO BE CHANGING THE DYNAMICS OF HOW IT IS ACTING WITHIN THE BLOODSTREAM AND THE MICE. SO, A LOT MORE TO LEARN ABOUT THIS AND WE CONTINUE TO COLLECT DATA AND ANALYZE IT AS IT BECOMES AVAILABLE. WE ARE VERY CONCERNED ABOUT THIS ONE CASE IN UTAH AND HOPING TO BE ABLE TO HAVE MORE SOLID INFORMATION ABOUT THE IMPLICATIONS OF WHAT THAT ONE CASE MEANS. >> SO ONE OTHER QUESTION. WHAT ABOUT THE PREVENTION WITH THESE MEET AND GREET MOSQUITOES AND COMMUNITY? I HEARD THIS WAS TOTALLY FROM THE NEWS THAT THERE WAS -- IN THE KEYS IN THE FLORIDA KEYS THERE WAS A COMMUNITY THAT SAID WE DON'T WANT GMO MOSQUITOES OR SOMETHING LIKE THAT. HOW ARE YOU DEALING WITH THAT? >> WELL, I WILL SAY THIS. THIS IS AN EVOLVING EPIDEMIC. AND SOME CASES WE HAVE HEARD A LOT OF THINGS FROM THE COMMUNITY. THEY DO NOT WANT SPRAY IN SOME COMMUNITIES BECAUSE OF THEIR PERCEIVED RISK AND REAL RISK. THERE IS ALSO THE GMO ARGUMENT THAT YOU DON'T WANT THESE MOSQUITOES BECAUSE THE POTENTIAL FOR MUTATIONS AND OTHER DISEASE RESISTANT LONG-TERM EFFECTS OF THAT. WHAT WE ARE HOPING TO DO IS CONTINUE TO EDUCATE THE COMMUNITIES WITH ANIMAL SCIENCE. WE ARE RELYING ON NIH, CDC AND OTHER STAKEHOLDERS ACROSS THE UNITED STATES AND INTERNATIONALLY TO HELP US TO GET MORE VISIBILITY ON WHAT WE SHOULD BE DOING AND DOING IT THE RIGHT WAY. THE MOST IMPORTANT THING IN THIS ENTIRE APPROACH IS DEFINITELY COMMUNITY EDUCATION AND ENGAGEMENT WITH THE COMMUNITY. STAKEHOLDERS AT THIS POINT CAN MAKE OR BREAK OUR SUCCESS IN THIS. SCREENING IN PUERTO RICO IS VERY DIFFICULT SIMPLY BECAUSE OF THE COMMUNITIES PERCEPTION OF THE U.S. GOVERNMENT. IT'S A VERY REAL FEAR. HISTORICALLY, THEIR RELATIONSHIPS WITH THE UNITED STATES GOVERNMENT PROPER, PUERTO RICO IS DEFINITELY A TERRITORY OF THE UNITED STATES BUT THEY SEE THEMSELVES AS SEPARATE IN A LOT OF WAYS. ENGAGING WITH THOSE COMMUNITY MEMBERS AND THE LEADERSHIP ON THE ISLAND HAS TO BE TAKEN WITH VERY DELIBERATE AND INFORMED STEPS. WHAT WE NEED TO DO IS TO MAKE SURE THAT EVERYONE IS INFORMED AND HAS TRANSPARENCY ABOUT WHAT THE PLANS ARE AND INCLUDING PUERTO RICO IN ALL THOSE DECISIONS. AS IN THE KEYS, IN THE KEYS, THEY HAVE DECIDED THEY DO NOT WANT THESE MOSQUITOES. WE NEED TO WEIGH THE RISKS VERSUS BENEFITS OF TAKING THAT AS A PART OF THE CONVERSATION. I WILL SAY I AM CONCERNED ABOUT THE INABILITY TO HAVE HARD SCIENCE TO SUPPORT ONE WAY OR THE OTHER, ONE POSITION OR THE OTHER BUT AS SCIENCE EVOLVES WE HOPE TO BE ABLE TO PUT THAT OUT TO THE COMMUNITY AND MAKE HEADWAY IN BEING ABLE TO MAKE THE IMPACT WE NEED TO AT THE COMMUNITY LEVEL. WE ARE CONCERNED ABOUT RESISTANCE OF THE MOSQUITOES. WE FOUND THAT SOME OF THE MOSQUITOES ARE RESISTANT TO THEINALLA IN SOME CASES SO THAT IS ANOTHER ISSUE ALL TOGETHER. WE NEED TO FIGURE OUT HOW BEST TO ADDRESS THOSE COMMUNITIES THAT IT IS HAVE STANDING WATER BECAUSE THE TROPICAL REGIONS OF THE UNITED STATES AND PUERTO RICO AND THE U.S. VIRGIN ISLANDS WHERE THAT IS AN ONGOING PROBLEM. WE ALSO NEED TO BE CONCERNED ABOUT THE SOUTHERN UNITED STATES, NOT JUST FLORIDA, BUT OTHER AREAS THAT HAVE TROPICAL CLIMATES WHERE ZIKA CAN SPREAD IN HIGH VOLUME. IT'S BEEN SAID TO US MANY TIMES WE ARE TAKING THIS ONE DAY AT A TIME AND THAT IS VERY TRUE IN THIS PARTICULAR CASE. >> THANK YOU VERY MUCH. I THINK IF YOU ARE ABLE TO STAY, OBVIOUSLY THIS IS A TOPIC THAT HAS A LOT OF INTEREST AND MAYBE DURING OUR COFFEE BREAK WE CAN CONTINUE. SO, I THINK ERIC HAS JOINED US ON THE PHONE, IS THAT RIGHT? [ LAUGHS ] I'LL INTRODUCE YOU IN A SECOND. I WAS JUST GOING TO GO BACK -- ERIC HOROWITS ARE YOU ON THE PHONE? >> I HAVE BEEN ON THE WHOLE TIME BUT I COULDN'T TALK DURING THE CONFERENCE CALL BUT I HAVE BEEN ENJOYING THE VIDEO. I'M IMPRESSED BY THE CINEMATOGFERS IN THE ROOM. IT'S A HIGH QUALITY T.V. SHOW. >> YOU'RE PROBABLY STILL IN YOUR PAJAMAS THERE. [ LAUGHS ] BUT WELCOME TO THE BOARD. I DO WANT TO INTRODUCE THE OTHER ERIC. ERIC DISHMAN IS THE DIRECTOR OF THE PRECISION MEDICINE INITIATIVE COHORT PROGRAM. WE GOT TO KNOW ERIC THROUGH HIS BRIEF STINT ON THE BOARD OF REGENTS FOR ABOUT A YEAR BEFORE HE GOT CALLED TO THE HIGHER OFFICE THAT HE IS NOW OCCUPYING. >> [ INDISCERNIBLE ] >> HE IS VERY WELL RECOGNIZED INTERNATIONALLY FOR HIS WORK IN THE HEALTH CARE REFORM IN COMMUNITY-BASED TECHNOLOGIES AND SERVICES. I GOT TO KNOW HIM EARLY ON WHEN HE WAS WORKING ON TRACKING THE ELDERLY IN PLACE AT HOME AND HE WORKED ON THOSE KINDS OF ACTIVITIES. HE COFOUNDED ORGANIZATIONS DEVOTED TO ADVANCING INDEPENDENT LIVING INCLUDING THE TECHNOLOGY RESEARCH FOR INDEPENDENT LIVING CENTER. THE CENTER FOR AGING SERVICES TECHNOLOGIES, THE EVERY DAY TECHNOLOGIES FOR ALZHEIMER'S CARE, PROGRAM AND THE OREGON CENTER FOR AGING AND TECHNOLOGY. HE IS NOW IN THE FIRST DIRECTOR OF PRECISION MEDICINE INITIATIVE IN THE COHORT PROGRAM AND LEADING NIH'S EFFORT TO BUILD THE LANDMARK RESEARCH STUDY OF ONE MILLION OR MORE U.S. VOLUNTEERS TO IMPROVE HEALTH AND TREAT DISEASE FROM PRECISION MEDICINE. SO I GUESS YOU WILL GIVE US AN UPDATE AND WE ARE ANXIOUS TO HEAR ABOUT IT. >> IT'S FANTASTIC TO BE BACK IN THIS ROOM. ON THE WAY HERE I WALKED OVER FROM BUILDING ONE AND THIS GENTLEMAN ASKED ME DO YOU KNOW WHERE LISTER HILL IS? THERE ARE SO FEW BUILDINGS ON THIS CAMPUS ID KNOW HOW TO FIND BUT THAT ONE I DO KNOW. I FELT LIKE A FED AND I BELONG ON THE NIH CAMPUS NOW. IF YOU FOLD ME TWO YEARS AGO WHEN I JOINED THE BOARD OF REGENTS HERE THAT I WOULD BE RUNNING THIS PRECISION MEDICINE INITIATIVE COHORT PROGRAM AND COMING BACK INTO THIS ROOM AND HAVING A DEAR FRIEND, PATTY BRENNAN, RUN THE NATIONAL LIBRARY OF MEDICINE EFFORT, I WOULD HAVE LOST THAT. THAT WOULD HAVE BEEN A TIME CAPSULE I COULDN'T HAVE PREDICTED. I'M THRILLED TO HAVE HER HERE AND CAN'T WAIT TO WORK TOGETHER ON MAKING THIS INNOVATION HAPPEN. SO I'LL SPEND ABOUT 20 MINUTES JUST GOING THROUGH AND GIVING YOU -- FOR SOME OF YOU THIS MAY BE A FIRST UNDERSTANDING OF THE PMI COHORT PROGRAM AND OTHERS, SO I'LL DO A LITTLE BIT OF BOTH EXPLANATION AND UPDATE ON WHAT IS GOING ON. SOME KNOW MY PERFORM STORY. I FOUND THIS PHOTO. THIS WAS MY VERY FIRST WEEK OF IN PRECISE CHEMOTHERAPY IN THE SUMMER OF 1989 AT CHAPEL HILL. MY WIFE WISELY GOT ME A PUPPY BECAUSE I THINK SHE KNEW I NEEDED SOMETHING POSITIVE AND EXCITING TO SORT OF GET ME THROUGH SIS PLATINUM WAS AT A DOSE YOU COULDN'T IMAGINE. AND THIS WAS THE BEGINNING OF A 23-YEAR JOURNEY OF WELL OVER 50-60 ROUNDS OF TREATMENT, LOTS OF DIFFERENT DIFFERENTIAL DIAGNOSIS CODES AND EVERYBODY DOING WELL INTENTIONS BUT BASICALLY GUESSWORK TO FIGURE OUT WHAT IT WAS GOING TO TAKE TO TREAT ME. IT WAS A WHOLE GENOME SEQUENCE AT THE END OF THIS WHEN I WAS AN EXECUTIVE AT INTEL ON MY LAST BUSINESS TRIP AND VISITING GENOMICS COMPANIES AND ONE REMEMBERED ME FROM A PATIENT CONFERENCE AND HAPPENED TO SEQUENCE ME. MY CLINICAL TEAM AFTER IT TOOK THREE MONTHS OF PROCESSING ON INTEL'S HIGHEST END COMPUTERS ABOUT 5 YEARS AGO TO COMPARE ME TO THE NOT ME OF MY GENOME AND PULL OUT OF MY ELECTRONIC HEALTH RECORD DATA AND PAST TRIALS TOGETHER TO TRY TO FIGURE OUT WHAT WAS HAPPENING. IT HELPED THEM MAKE A MORE EDUCATED GUESS ABOUT THE MECHANISM THAT WAS CAUSING MY CANCER AND PUT ME ON A PANCREATIC CANCER DRUG AND THEN I WAS CANCER FREE. INTEL EMPLOYEE DONATED A KIDNEY AND I'M HEALTHIER AT AGE 48 THAN I WAS AT 19 AND 20 AND ALL THROUGH THERE. SO IT IS DEFINITELY TRUE THAT I'M MEANT TO BE HERE AND MEANT TO BE WORKING ON THIS CAUSE OF, HOW DO YOU BRING THESE DATA TYPES TOGETHER TO REALLY INDIVIDUALIZE CARE AND UNDERSTAND POPULATIONS AND MOVEMENT THROUGH POPULATIONS? SO, WITH THAT IN MIND, I JOINED THE WORKING GROUP OF THE PRECISION MEDICINE INITIATIVE COHORT PROGRAM. WE ARE ON THE PATH TO INVITE A MILLION OR MORE VOLUNTEERS IN AMERICA, REFLECTING THE BROAD DIVERSITY OF THE UNITED STATES, TO JOIN THIS EFFORT. VOLUNTEERS IN THE PROGRAM WILL HAVE AN OPPORTUNITY TO PROVIDE DATA AND ONGOING BASIS IN A MIX OF WAYS AND I'LL TALK ABOUT THE DATA TYPES THAT WILL COME TOGETHER AND THIS IS A VERY OPEN PROJECT. OBVIOUSLY WE HAVE TO DEIDENTIFY AND TAKE APPROPRIATE RISKS BASED CONTROLS AROUND INFORMATION THAT COULD BE REIDENTIFIED BUT THE INTENT IS TO SHARE THE DATA FREELY AND TO RAPIDLY INFORM A WHOLE WIDE RANGE OF RESEARCH. WE ARE NOT DOING THE RESEARCH. WE ARE BUILDING A NATIONAL PLATFORM FOR THE PUBLIC, FOR THE INSTITUTES AND OTHERS TO USE TO DO TONSE AND TONSE OF STUDIES ON TOP OF THAT. THE MISSION HERE, WHEN I ARRIVED MY FIRST WEEK IN JULY, I ARRIVED ON A MONDAY AND THEY SAID, YOU NEED TO LEAD A THREE-DAY WORKSHOP FROM WEDNESDAY-FRIDAY WITH 33 AWARDEES WE JUST ANNOUNCED AND GET THEM REALLY INSPIRED TO WORK ON THIS BY THE WAY THE WHITE HOUSE WANTS TO ANNOUNCE IT SO YOU NEED TO DO TRAINING ON SPEAKING WITH THE WHITE HOUSE AND ALL OF THAT. IT WAS A TRIAL BY FIRE. AND I PUT THIS SLIDE TOGETHER FOR THAT FIRST EVENT AND SAID LOOK, OUR MISSION IS TO ACCELERATE THE SCIENCE AND BREAKTHROUGHS THAT DRIVE TOWARDS PRECISION HEALTH FOR ALL. AND I USE THE WORD PRECISION HEALTH DECIDEDLY. IT'S NOTED JUST ABOUT MEDICINE IN THE TRADITIONAL SENSE BUT IT'S ABOUT HOW DO WE DESIGN INFRASTRUCTURE AND EXPERIENCES AND UNDERSTANDING AND TRAINING SO THAT INDIVIDUALS CAN PULL TOGETHER WHAT THEY NEED WITH THE HELP OF A TEAM AND COMMUNITIES TO REALLY FIT THEIR UNIQUE NEEDS. IF YOU THINK ABOUT THE SORT OF CLASSIC ASPECTS OF SCIENCE, YOU HAVE A SET OF QUESTIONS OR PROBLEMS OR HYPOTHESES, AND YOU HAVE TO CAPTURE DATA AND IN THIS CASE, WHEN WE START TALKING ABOUT OMIC AND M HEALTH AND OTHER KINDS OF DATA, SECURING AND CLEANING AND SHARING THAT DATA, AND YOU UNLEASH SCIENCE AND DIVERSE SCIENTISTS ON TOP OF THAT DATA, AND THEN YOU NEED TO FIGURE OUT HOW TO TRANSLATE THAT INTO ACTION. HOW DO WE MAKE MEANINGFUL USE OF PRECISION MEDICINE DATA IN THE LIVES OF INDIVIDUALS? AND IF YOU THINK ABOUT THE KNOWLEDGE TURNS. IT'S A TERM THAT COMES FROM ECONOMICS. ECONOMISTS USED TO ANALYZE THE KNOWLEDGE TERMS WITHIN A PARTICULAR COUNTRY AND THEY WOULD LOOK AT, CAN WE BOOST SCIENCE? CAN WE BOOST STEM EDUCATION? CAN WE PUT INFRA INSTRUCT NUR PLACE THAT ALLOWS THE KNOWLEDGE TURNS TO MOVE MORE QUICKLY THROUGH THE CULTURE? THIS IS WHAT WE ARE DOING. WE WANT TO SHRINK THE TIME IT TAKES TO GET AROUND THAT CIRCLE, TIME AND TIME AGAIN AND ACCELERATE PEOPLE BEING ABLE TO MOVE THROUGH THOSE CIRCLES BY BUILDING A BASE PLATFORM OF A MILLION TRUSTED PEOPLE THAT WE CAN KEEP ENGAGED AND INFORMING US OVER A LONG PERIOD OF TIME AND DATA INFRASTRUCTURE THAT ALLOWS PEOPLE TO ACCESS THEM. THERE IS ARE SEVERAL ASPECTS OF THE PROGRAM. I GET LOTS OF QUESTIONS FROM PEOPLE AROUND THE WORLD SAYING HOW IS THIS DIFFERENT THAN OTHER LARGE COHORT PROGRAMS? I THINK THERE ARE AT LEAST 3-4 AND THIS IS FOUNDATIONAL FOR US. IT'S A TRANSFORMATIONAL APPROACH TO DIVERSITY WE ARE TAKING. I CALL IT QUADRUPEL DIVERSITY. THE DIVERSITY OF PEOPLE, IF YOU THINK ABOUT THE GRAND EXPERIMENT THAT IS THE UNITED STATES OF AMERICA AND THE MELTING POT METAPHOR WHICH IS CERTAINLY A METAPHOR YOU CAN CRITIQUE AND GETS ACROSS THE NOTION OF SO MANY DIFFERENT KINDS OF PEOPLE COMING TO THIS COUNTRY, THE DIVERSITY THAT WE HAVE HERE WILL HELP US UNDERSTAND ASPECTS OF THINGS FROM ALL OVER THE WORLD. THERE IS NO OTHER COUNTRY THAT CAN REALLY CREATE THAT KIND OF DIVERSITY IN ONE PLACE AND REALLY UNDERSTAND IT. SO THE DIVERSITY OF PEOPLE IN THIS WILL BE ALL AGES, CHILDREN EVENTUALLY, PREGNANT WOMEN, RURAL, URBAN, ALL SOCIOECONOMIC STATUS. WE ARE WORKING THROUGH TONS AND TONS OF DIFFERENT STRATEGIES AND TECHNIQUES FOR RECRUITMENT TO MAKE SURE THAT WE ESPECIALLY OVERSAMPLE THE UNDERSTUDIED AND THOSE THAT NEVER HAVE BEEN ABLE TO PARTICIPATE IN THESE KINDS OF RESEARCH STUDIES BEFORE. A DIVERSITY OF HEALTH STATUS. THIS IS NOT A DISEASE SPECIFIC STUDY IN ANY WAY SHAPE OR FORM. THEY WILL HAVE PEOPLE OF ALL RANGES OF HEALTH AND UNDERSTAND THE EMERGENCE OF THAT HEALTH OVER A PERIOD OF TIME. CERTAINLY DIVERSITY OF GEOGRAPHY. AGAIN RURAL, URBAN, A RANGE OF METEOROLOGICAL SETTINGS BECAUSE ROCHESTER, NEW YORK IS VERY DIFFERENT IN THE WINTER THAN IT IS OTHER TIMES OF THE YEAR AND THEN CERTAINLY RURAL AND URBAN AND ALL POINTS IN BETWEEN. AND THEN A DIVERSITY OF DATA TYPES. OVER TIME, WE WILL COLLECT A WIDE RANGE OF BIOSAMPLES, ELECTRONIC HEALTH RECORD DATA, CLAIMS DATA, IMAGING DATA, M HEALTH DATA. THAT COMING FROM SMARTPHONES THAT PEOPLE ALREADY HAVE OR WEARABLES THEY ALREADY HAVE AS WELL AS LIKELY A FUTURE WHERE WE HAVE TO FIGURE OUT HOW TO BUILD THE INFRASTRUCTURE TO HAVE PARTICULAR TOOLS THAT WE WANT A MILLION PEOPLE TO BE ABLE TO DO. OUR COHORT MAY BRING IN A GLASS OF WATER FROM THEIR HOME TO UNDERSTAND THE LAST MILE PROBLEM OF THEIR DRINKING WATER SUPPLY. NOT AT THE MUNICIPAL CENTER BUT IN WHAT ACTUALLY HAPPENS WHEN IT COMES INTO THEIR LIVES AND INTO THEIR BODIES. SO THESE ARE THE KINDS OF THINGS WE ARE TRYING TO PULL THE THREADS TOGETHER OVER TIME. IT'S ALSO A TRANSFORMATIONAL APPROACH TO PARTICIPANTS. WE DIDN'T JUST CHANGE THE NAME OF HUMAN SUBJECTS TO PARTICIPANTS AND LET IT BE DONE THERE. WE ARE INCLUDING PARTICIPANTS IN ALL ASPECTS AND LEVELS OF THE GOVERNANCE, HELPING TO FIGURE OUT WHAT ARE THE SCIENTIFIC QUESTIONS THAT WE ARE GOING TO DO. WE ARE IN THE PROCESS OF REVIEWS RIGHT NOW WITH ADDITIONAL HEALTH PROVIDER ORGANIZATIONS AND GOING THROUGH THE DIFFERENT WAYS IN WHICH THEY HAVE INCLUDED PARTICIPANTS AND COMMUNITIES INTO THE DEFINITION OF THE SCIENCE AND THE DEFINITION OF THE PLATFORM THAT WE ARE BUILDING. SO THAT IS A KEY ASPECT OF IT AND WE DON'T KNOW HOW TO DO IT ALL. WE ARE LEARNING AS WE GO. MAKING MISTAKES AS WE GO. AND SOME OF THE RESEARCH THAT WE ARE DOING IS JUST ON THE VERY PROCESS OF HOW DO YOU RECRUIT DIVERSE COMMUNITIES IN AN EFFECTIVE WAY AND HOW DO YOU ACTUALLY DO PARTICIPANT KINDS OF RESEARCH GOING FORWARD? ALSO A TRANSFORMATIONAL APPROACH TO DATA ACCESS. SO THE DATA SHARING WILL BE SWIFT TO RESEARCHERS AND PARTICIPANTS AND WE WILL BE MAKING INVESTMENTS TO MAKE SURE THAT THIS IS NOT JUST THE TIER 1 CLINICAL RESEARCH CENTERS THAT ALREADY HAVE BIG DATA INFRASTRUCTURES AND ALREADY HAVE DATA SCIENTISTS BUT HOW DO WE HAVE COMMUNITY COLLEGES AND CITIZEN SCIENTISTS AND OTHERS BE ABLE TO PARTICIPATE AND ENGAGE IN THIS PROGRAM? SO WORKING ON THOSE PROGRAMS TO BUILD THE CAPACITY TO OPEN UP THE PLATFORM TO A LOT MORE PLAYERS THAN THOSE YOU JUST TRADITIONALLY EXPECT. AND THEN TWO PRIMARY METHODS WHICH WILL BE BRINGING PEOPLE ONBOARD. ONE IS WHAT WE CALL THE DD PATH, DIRECT VOLUNTEERS. HERE IS 1-800 NUMBER I CAN CALL. HERE IS A WEBSITE I CAN GO TO. HERE IS THE APP I CAN DOWNLOAD. OR MY CHURCH REACHED OUT AND THEY WILL ONBOARD ME IN A NON-DIGITAL WAY. ALL OF THESE DIFFERENT METHODOLOGIES TO BE ABLE TO HAVE ANYBODY IN THE COUNTRY WHETHER THEY HAVE INSURANCE OR NOT, WHETHER THEY HAVE AN ELECTRONIC HEALTH RECORD OR NOT, ENGAGE IN THE SYSTEM, AND BE ABLE TO GET A QUALITY BIOSAMPLE COLLECTED IN A CONSISTENT WAY WHEREVER THEY ARE IN THE COUNTRY. THAT IS A HUGE CHALLENGE AND WE ARE WORKING ON BUILDING OUT THAT CAPACITY AS WE WE TALK. THE OTHER PATH IS THROUGH HPOs HEALTH PROVIDER ORGANIZATIONS IS A RANGE FROM THE VETERAN'S ADMINISTRATION OR STRATEGIC PARTNERS WITH US, TO REGIONAL MEDICAL CENTERS, INTEGRATED DELIVERY NETWORKS, FEDERALLY QUALIFIED HEALTH CENTERS, ALL OF THE DIFFERENT KINDS OF PROVIDERS IN THE COMMUNITY WHO CAN USE THEIR LOCAL TRUST, THEIR LOCAL BRAND, LOCAL RELATIONSHIPS WITH PEOPLE TO BRING THEM INTO THE COHORT PROGRAM. SO RIGHT NOW WHAT ARE WE IN THE MIDST OF? YOU CAN MANAGE WHIN I CAME INTO THAT SETTING AND HERE IS 33 NEW AWARDEES CENTERED AROUND EIGHT CONSORTIA, HOW DO I GET THEM TO ACT AS ONE TEAM? AND ONE TEAM BUILDING A PLATFORM. WHEN I CAME INTO THAT FIRST MEETING I THINK 70% OF THE PEOPLE IN THE ROOM DIDN'T KNOW WHAT I MEANT BY THE WORD, PLATFORM. I'M TURNING ALL OF THESE AWARDEES AND THIS IS NOT YOUR TRADITIONAL RESEARCH GRANT PROGRAM, BECAUSE THEY ARE ALL PIECES OF WHAT I THINK OF AS A COMPANY THAT WOULD BUILD OUT A PLATFORM END-TO-END THAT CAN BE SUSTAINED FOR DECADES TO COME. MAYBE ONE OF THE REASONS I ENDED UP HERE IS ONE OF THE FIRST WORKING GROUP I GOT INVITED TO AND I JOINED TWO YEARS AGO, I HAPPENED TO BE SITTING NEXT TO DR. COLLINS. I DIDN'T KNOW HIM WELL. AND I WHISPERED TO HIM, I SAID, YOU DO REALIZE THIS WHAT YOU'RE TRYING TO DO IS TO TAKE NIH AND NIH PROCESSES AND PEOPLE AND MAKE SOMETHING THAT IS MORE LIKE WHAT GOOGLE OR A PLATFORM COMPANY WOULD DO, RIGHT? AND MAYBE THAT IS ONE OF THE REASONS WHY I ENDED UP HERE. BE CAREFUL WHAT YOU SAY IN THOSE EARLY WORKING GROUP MEETINGS BECAUSE THEY WILL REAL YOU IN AND YOU'LL NEVER KNOW WHAT HAPPENED TO YOU. SO 33 AWARDEES SO FAR. AND 11 WORKING GROUPS OR WHAT I THINK OF AS DEPARTMENTS. I WILL COME AND EVENTUALLY SHOW YOU A CHART THAT DOESN'T TALK ABOUT THE ORGANIZATIONS WHERE THEY COME FROM BUT TALKS ABOUT THE FUNCTIONS OF WHAT WE ARE PULLING TOGETHER TO GO TRY TO DELIVER. THESE ARE SOME OF THE WORK GROUPS LISTED HERE FROM BIOBANKS AND THESE ARE SOME OF THE CORE FEATURES. SO A DATE AT AND RESEARCH SUPPORT CENTER, DRC AWARD THAT WENT TO VANDERBILT, GOOGLE AND THE BROAD INSTITUTE. AND THEY OWN THE BACK END DATA LINK INFRASTRUCTURE AND EVENTUALLY BUILDING ALL THE TOOLS -- WE ARE NOT GOING TO BUILD EXCEPT WHEN WE HAVE TO, BORROWING AND LEVERAGING THE TOOLS OF OTHERS, NLM AND OTHER PARTS OF ENOUGH THAT ALREADY HAVE TOOLS, LEVERAGING THOSE TOOLS TO MAKE THEM AVAILABLE TO RESEARCHERS ON TOP OF THAT. MAJOR AWARD WENT TO THE PTC, PARTICIPANTS TECHNOLOGY CENTER AT THE SCRIPPS IN SAN DIEGO. LED BY ERIC TOPEEL ALONG WITH A COMPANY CALLED VIBRANT HEALTH. THOSE ARE TWO OF THE FOUNDATIONAL PIECES. SO THEY WILL BE FOCUSING ON THAT DIRECT VOLUNTEER CAPACITY AS WELL AS ALL THE FRONT END CAPABILITIES OF THE INTERFACES ON THE SMARTPHONE, ON THE WEBSITE, TO ENGAGE PARTICIPANTS IN DIGITAL WAYS AS WELL AS DEVELOPING OUR PLANS FOR PULLING IN MOBILE HEALTH WEARABLE AND OTHER KINDS OF DATA GOING FORWARD. SO BIG CHALLENGE TO GET ALL OF THESE FOLKS TRAINED ON WHAT IS PRODUCT DEVELOPMENT PROCESS? WHAT IS PLATFORM DEVELOPMENT PROCESS LOOK LIKE? WE ARE WORKING ON TRANSITION PLANS. SO OUTSIDE OF THESE 33 AWARDEES, LAST COUNTED NOW 17 DIFFERENT AGENCIES AND DEPARTMENTS ACROSS THE GOVERNMENT. ONE OF THE AMAZING THINGS THAT HAVING THE PRESIDENT'S SUPPORT ON THIS AND THE SECRETARY'S SUPPORT IS PULLING TOGETHER GOVERNMENT TO WORK IN PLACES. SO THE RELATIONSHIP THAT IS WE HAVE WITH FDA, WITH VA, WITH DOD, AND MANY OTHERS BECAUSE WE HAVE TO WORK ON POLICY ISSUES, WE HAVE TO WORK ON LEGISLATIVE CHANGES. THIS IS TO IF SILLITATE THIS LONG RUN WE ARE DOING. THAT'S BEEN A REMARKABLE THING. SO RIGHT NOW WE ARE WORKING ON TRANSITION PLANS. WHAT DO WE DO IN A NEW ADMINISTRATION TO MAKE SURE WE BUILT THE RELATIONSHIP NETWORK AT A FEDERAL LEVEL NOT JUST THOSE POLITICAL APPOINTEES SO WE CAN SUSTAIN WHAT WE ARE DOING GOING FORWARD AND BUILDING ROBUST COMMUNITY PARTNERS NETWORK. WE ARE ALMOST THROUGH REACHING OUT TO OUR TOP 50 COMMUNITY PARTNERS AROUND THE COUNTRY WHO CAN HELP RECRUIT AND EDUCATE AND INSPIRE PEOPLE LOCALLY TO BE ABLE TO COME INTO THE COHORT PROGRAM, AS WELL AS A WORKSHOP WE ARE DOING NEXT WEEK WITH HHS WITH TRADITIONAL COMMUNITY PARTNERS THAT HHS HAS WORKED WITH BROADLY FOR A WIDE RANGE OF PURPOSES. SO THAT IS REALLY ABOUT BUILDING THE TEAM. WE ARE ALSO ROLLING OUT PERSONAS FOR THOSE WHO DON'T KNOW WHAT THOSE ARE, I'M A USER CENTER DESIGN EXERT AND STUDY PEOPLE FROM THE BEGINNING, MIDDLE AND END AND ALL THE WAY THROUGH WANT. SO WE ARE ROLLING OUT A SET OF PORE SEWNAS BASED ON WORK WE HAVE DONE IN PEOPLE'S HOMES AND FOCUS GROUPS. THEY CUT ACROSS GENDER, SOCIOECONOMIC STATUS, RACE AND ETHNICITY. THIS IS THE CATEGORY OF NOT FOR ME. WE DON'T WANT TO BE IN A STUDY LIKE THIS AND HERE IS WHY AND HERE IS WHAT IT WOULD TAKE IF THEY WERE ENGAGED IN DOING THAT. WE HAVE A 5000 PERSON COMMUNITY OF BETA TESTERS, HELPING US TO TEST OUT THE EARLY CAPABILITIES AND SYSTEMS. WE ARE TESTING THE CONSENT LANGUAGE AND SOME VERY CREATIVE WAYS OF DOING CONSENT. THE FIRST 5 SURVEY MODULES THAT WILL GO OUT AS WELL AS DEFINING THE NEXT 12, WE ARE GETTING FEEDBACK ON CONTENT AND DESIGN AND ANNOUNCE OUR NAME. WE WON'T BE CALLED THE PMI COHORT PROGRAM. PEOPLE DON'T LIKE THE WORD COHORT. I'M VERY EXCITED WHEN THAT COMES OUT IN THE NATIONAL BRANDING AROUND THAT AS WELL. BUT TESTING THAT OUT. AND EXPERIMENTING WITH DIFFERENT RECRUITMENT METHODS. PROBABLY THE FIRST 5 WE WILL USE FOR VERY DIVERSE COMMUNITIES AND ANOTHER 15 WE ARE THINKING ABOUT FURTHER OUT AND THEN DEVELOPING FULL PROTOCOL OF THE BIOSPECIMEN CAPTURE, BLOOD AND URINE IN THE FIRST ROUND AND OTHER CAPABILITIES OVER TIME AS WELL AS CYBERSECURITY TESTING. YOU CAN IMAGINE THAT IF WE LOSE THE TRUST EITHER BECAUSE IT'S NOT A GREAT EXPERIENCE FOR PARTICIPANTS OR WE LOSE THE TRUST BECAUSE OF SECURITY ATTACKS THEN WE ARE GOING TO BE OFF TO A BAD START. AND THERE IS NO SUCH THING AS FOOLPROOF SECURITY BUT WE HAVE CYBERSECURITY EXPERTS FROM INDUSTRY ACROSS GOVERNMENT HELPING TO MAKE SURE WE PUT THE BEST INFRASTRUCTURE WE CAN IN PLACE. SO LET ME CLOSE WITH A COUPLE OF THOUGHTS ON WHERE WE ARE IN TERMS OF THE PLATFORM APPROACH. I'M GOING TO PROBABLY COME BACK FOR DECADES TO COME TO TALK TO YOU ABOUT THIS. THIS IS THE INNOVATION FUNNEL THAT ALMOST EVERY INNOVATION COMPANY NOT JUST IN SILICON VALLEY USES. AND WHAT THIS DESCRIBES IS THE PROCESS FOR MOVING FROM CONCEPTUALIZATION AND IDEATION TO IMPLEMENTATION AND WHAT WE ARE GOING TO BE DOING OVER TIME IS HAVING MULTIPLE TEAMS THAT ARE MOVING THROUGH THIS PIPELINE TOWARDS LAUNCHING A PARTICULAR PLATFORM AND EVERY TIME WE DO A RELEASE, THIS IS NOT A ONE-TIME THING. IMAGINE EVERY 12-18 MONTHS WE WILL DO SOME ADDITIONAL BIOSPECIMEN CAPTURE AND AN ADDITIONAL ROUND OF SURVEYS AND OTHER KINDS OF INSTRUMENTS THAT GO OUT. EACH RELEASE MAY HAVE NEW FEATURES FOR PARTICIPANTS. NOW WE HAVE A WAY THAT YOU CAN HAVE A SOCIAL NETWORK FROM WITHIN OUR SYSTEM AND DON'T HAVE TO GO OUT TO FACEBOOK FOR IT. OR NEW FEATURES FOR RESEARCHERS, NEW SCIENTIFIC FOCUS AREAS AND MEASURES OVER TIME AS WELL AS NEW DATA CAPTURE CAPABILITIES. WE ARE NOT GOING TO BE READY TO DO THINGS WITH SMARTPHONES AND WEARABLES OUT OF THE GATE SO WE'LL ADD THOSE CAPABILITIES AND ADDITIONAL RELEASES OVER TIME. SO MOVING FROM EXPLORATION TO THE DEFINITION OF THE PLATFORM AND THAT MEANS BOTH YOUR RECRUITMENT METHODOLOGY SPEC COMMUNICATION MESSAGES AS WELL AS THE TECHNOLOGY THEY IS IN PLACE. THEN YOU DO ADVANCED DEVELOPMENT AND THE REASON IT IS NARROWING IS YOU'RE THROWING FEATURES OUT ALONG THE WAY. ALL THOSE GREAT IDEAS AND ADVANCED DEVELOPMENT AND YOU'RE TESTING OUT WHAT YOU DEFINED AND PROBABLY THROWING MORE OF IT OUT AS YOU MOVE TO VIABILITY. AND THEN FINALLY PRODUCTION AND LAUNCH. SO PEOPLE ASK ME WHEN ARE WE GOING TO LAUNCH? I SAY WE ARE GOING TO LAUNCH WHEN WE ARE THROUGH WITH THIS PIPELINE AND WE ARE READY AND THINGS ARE RIGHT FOR PARTICIPANTS AND FOR THE RESEARCHERS AND WE WILL NOT LAUNCH BEFORE THEN. WE WILL LIKELY DO PILOT LAUNCHES OF ALL OF THESE CAPABILITIES IN FALL AND WINTER BUT I DON'T THINK IT WILL BE ONE ALL SINGING AND DANCING LAUNCH. IT WILL BE THIS CAPABILITY IS WORKING AND WE ARE READY TO SCALE IT UP. THIS ONE IS READY AND WE ARE READY TO SCALE IT UP. ULTIMATELY WE WILL HAVE THREE TEAMS OPERATING. THE V1 TEAM VERSION 1, IS THAT IS ABOUT TO DELIVER AND MOST OF THE RESOURCE GAS THERE. THE V2 TEAM IS LOOKING FURTHER BACK AT DEFINING THE NEXT WAVE AND THE V3 TEAM IS ON THE EDGE SAYING THERE ARE THINGS WE WANT TO MEASURE BUT WE HAVE NO WAY TO CAPTURE IT AND NO WAY TO SCALE IT TO A MILLION PEOPLE. PEOPLE ARE LIKE, JUST DO THIS IT'S ONLY 25 DOLLARS. THAT'S 25 DOLLARS TIMES A MILLION PEOPLE EVERY TIME YOU SAY THAT TO ME, WE HAVE TO FIGURE OUT HOW TO ANTICIPATE AND DRIVE COST CURVES TO MAKE THIS AFFORDABLE. AND THEN THE OTHER PIECES OF THIS ARE DEFINING THE PLATFORMS. SO YOU'LL HEAR US TALK ABOUT LANDING ZONES WITH OUR PARTICIPANTS AS WELL. WHAT IS THE MINIMUM AND GOAL AND STRETCH GOAL? YOU CAN'T SOLVE FOR RESOURCES, SCHEDULES AND FEATURES ALL AT THE SAME TIME. AND THIS IS A METHODOLOGY THAT ALLOWS TO YOU CAPTURE DIFFERENT TARGETS AND WE CAN SAY IF WE NEED TO LAUNCH SOONER FOR SOME REASON THEN WE'LL GO WITH THE MINIMUM. IF WE NEED TO WAIT FURTHER IN TIME BECAUSE WE WANT TO GET SOME OF THESE STRETCH GOAL CAPE BUILT PULLED IN, THAT IS WHAT WE ARE DOING AND THAT COVERS ALL THE WORK WE ARE DOING. AND THE LAST THING THING I WANT TO SHARE IS THE APPROACH WE ARE TAKING IN REGARDS TO ENGAGING NOT JUST WITH THE INSTITUTES BUT OTHER INSTITUTES AND THE LARGER SCIENTIFIC COMMUNITY AS WELL. THIS IS THE EXAMPLE FRAMEWORK. THIS IS NOT A FINAL FRAMEWORK. SO DON'T OVER DETERMINE THIS. BUT IMAGINE DIFFERENT AREAS OF BODIES OF KNOWLEDGE FROM INFECTIOUS DISEASE TO HEART AND LUNG, CANCER, CHRONIC PAIN AND THEN ACROSS THAT THERE IS A BUNCH OF THINGS THAT APPLY TO EACH OF THESE. HOW DO YOU DO -- WHAT IS THE RESEARCH AROUND PREVENTION AND WELLNESS OR CARE GIVING AND COMPLIANCE OR REDUCING DISPARTIES AND IMPROVING ACCESS? AND THEN CAPABILITIES LIKE CONNECTING GENOMIC DATA, M HEALTH DATA AND ENVIRONMENTAL EXPOSURE DATA AND OTHERS. WHAT WE ARE IN THE PROCESS OF DOING, IF YOU THINK ABOUTES THAT, WE ARE LAUNCHING RESEARCH QUESTION WORKSHOPS AND WE HAD SOME OF THESE FROM THE WORK GROUPS AND PUBLIC SESSIONS ALREADY BUT THESE ARE MUCH DEEPER DIVES. WE WILL GO THROUGH ALL OF THESE AND LOOK FOR WHAT ARE COMMON ELEMENTS THAT WILL SERVE 4 OR 5 OR EVEN ALL 7 OR 8 OF THESE PARTICULAR AREAS AND VERSION ONE WHEN IT LAUNCHES MIGHT GET THIS MUCH PROGRESS TOWARDS GIVING MEANINGFUL DATA TO ACCELERATE SCIENCE. VERSION TWO MAY COME ALONG AND SAY WE DID A MAJOR INVESTMENT IN THIS PARTICULAR RELEASE TO REALLY INCREASE THE UNDERSTANDING OF HEART AND LUNG ISSUES ACROSS THE COHORT. VERSION 3 MAY COME ALONG AND SAY, HEY, WE HAVE REALLY DONE INVESTMENTS OVER HERE TO REALLY MOVE NEURO AND COGNITIVE UNDERSTANDING FORWARD. WE WILL GET THEY RESEARCHERS EXCITED ABOUT THIS. WE WILL GET THE PARTICIPANTS EXCITED ABOUT THIS AND ULTIMATELY PUBLISH A ROADMAP THAT GOES 2-3 YEARS OUT SO THAT PEOPLE CAN KNOW THIS IS WHEN THIS PARTICULAR CAPABILITY IS COMING. SO I'LL TEND IT WITH THAT. OPEN FOR YOUR QUESTIONS AND IT'S AN EXCITING TIME BUT YOU NEVER SEEN ANYTHING MOVE THIS FAST. IT'S PRETTY CRAZY. [ LOW AUDIO ] >> LONG TERM FUNDING. [ LOW AUDIO ] >> LET ME PUT IT THIS WAY. I WOULDN'T HAVE TAKEN THE JOB WITHOUT MAKING SURE THERE WAS STRONG BIPARTISAN SUPPORT AND THERE IS. ONE OF THE FEW THINGS THAT CONGRESS REALLY SEES THAT BOTH FROM AN AMERICAN HEALTH PERSPECTIVE AS WELL AS AN AMERICAN COMPETITIVENESS PERSPECTIVE IT'S IMPORTANT TO DO. I CANNOT LOOK YOU IN THE EYE AND TELL YOU RIGHT NOW THAT THE ANTICIPATED FUNDING OVER TIME -- WE DON'T KNOW BECAUSE WE DON'T KNOW OF OUR CAPACITY YET. WE DON'T KNOW IF IT'S ENOUGH OR NOT ENOUGH. I KNOW IT'S CERTAINLY NOT ENOUGH TO DO THE RESEARCH. IF WE DO A FIELD OF DREAMS WHERE WE BUILD IT AND NOBODY COMES WE ARE IN TROUBLE. THAT'S PART OF THE NEEDS FINDING AND THE RESEARCH QUESTION GATHERING WE ARE DOING SO THAT OTHER COMMUNITIES WANT TO CO-INVEST ON TOP OF THIS PLATFORM. BUT THERE IS EVERY EVIDENCE THAT -- AND AS WE DO TRANSITION PLANS ACROSS ADMINISTRATIONS THERE IS, IF YOU LOOK AT NIH HISTORICALLY, NIH AND MOST OF THE INDIVIDUAL INSTITUTES HAVE DIRECT RELATIONSHIPS WITH THEIR OWN LEGISLATIVE AND CONGRESSIONAL SUPPORTERS AND WHILE ADMINISTRATIONS CAN COME AND MAKE THINGS MORE OR LESS DIFFICULT IN GENERAL, THIS IS A RELATIONSHIP WITH CONGRESS AND THAT RELATIONSHIP IS QUITE POSITIVE. SENATOR ALEXANDER HAS BEEN AN ENORMOUS SUPPORTER FROM THE REPUBLICAN SIDE. AND IT'S JUST BEEN A BREATH OF FRESH AIR FOR ME COMING INTO. AND WE ARE ALSO SEEING INDUSTRY AND NOT FOR PROFITS AND OTHER FOUNDATIONS WHO UNDERSTAND THAT WE ARE BASICALLY TAKING OR DOING A TAX PAYER INVESTMENT ON AN INFRASTRUCTURE GOOD FOR THE COUNTRY WHO ARE INTERESTED IN FIGURING OUT HOW THEY CAN DONATE ON TOP OF THEM. [ LOW AUDIO ] >> I THINK LIKE EVERYTHING ELSE WE ARE DOING, THE RETURN OF RESULTS ON GENETIC INFORMATION AND HAVING WHICH WERE AND THOSE WHO ARE MENTALLY CHALLENGED, WE HAVE WORKING GROUPS THAT ARE WORKING THROUGH THOSE POLICIES. WON'T HAVE ALL OF THEM OUT OF THE GATE BUT YES, WE HAVE TO SORT THROUGH THOSE ISSUES. RIGHT NOW THERE IS A LOT OF INDUSTRY PLAYERS THAT ARE JUST SORT OF NO STRINGS ATTACHED SAYING WE WANT THIS TO BE SUCCESSFUL BECAUSE IT WILL HELP JUST SORT OF RAISE AND FLOAT MANY BOATS. BUT WE HAVE TO WORK THROUGH ALL THE IP ISSUES AND TRY TO FIGURE OUT HOW TO MAKE SURE THAT THE OPENNESS, WHICH IS A FUNDAMENTAL VALUE OF WHAT WE ARE DOING, THAT WE DON'T GET INTO TROUBLE WITH THAT. >> SO ALL OF THE PARTS OF THE MATRIX AND DIVERSITY MAKE MILLIONS SOUND LIKE - - . [ INDISCERNIBLE ] SO SHORT-TERM QUESTION, WHAT IS THE STRETCH GOAL AND THEN IN YOUR OWN HEART OF HEARTS, WHAT IS THE RIGHT SIZE OF THIS THING TO BE A PRESIDENTIAL INITIATIVE FOR THE ENTIRE COUNTRY? >> NOT BEING AN EPIDEMIOLOGIST, I DON'T HAVE THE ABILITY TO DO THE STATISTICAL POWER. OTHERS HAVE ALL THROUGH THE WORKING GROUP. WHAT WE DID IN THE WORKING GROUP AND WHAT CAME OUT IN THE REPORT IS A VERY CLEAR ANALYSIS IS, IF WE ONLY DO A MILLION AND WE USUALLY SAY A MILLION OR MORE, IT DOES MAKE ENORMOUS PROGRESS IN TEMPERATURES OF BREAKTHROUGHS AND SIGNIFICANT NUMBERS OF AREAS AND WE DETAIL THAT OUT IN THE FINAL REPORT THAT WENT UP TO DR. COLLINS. I BELIEVE AND WE BELIEVE THAT ONCE YOU BUILD THE PLATFORM IF YOU'RE SUCCESSFUL AT GETTING THE SNOWBALL AFFECT OF OTHERS SUPPORTING IT, ONCE YOU BUILT THE INFRASTRUCTURE, YOU OUGHT TO BE ABLE TO DO THIS WITH 10, 20 OR SOMETHING LIKE THAT. THAT IS ONE ANGLE AS WE THINK IT WILL BE LARGER IF WE ARE DOING A GOOD JOB OF BUILDING SOMETHING OF VALUE IT WILL GROW LARGER NATURALLY, SETTING UP THE MECHANISMS TO DO THAT. THE OTHER PATH WE ARE TAKING LIKE DR. RORY COLLINS FROM THE U.K. BIOBANK IS ON OUR ADVISORY PANEL. MIKE THE PI FOR THE MILLION VETERANS PROGRAM, WE ARE ALREADY HAVING CONVERSATIONS INTERNATIONALLY AND WITHIN THE FEDERAL GOVERNMENT ABOUT HOW DO THESE LARGE COHORTS, HOW DO WE LEARN FROM EACH OTHER? MY GOSH, DON'T USE TAXPAYER MONEY TO MAKE THAT SAME MISTAKE AGAIN. THEN B, WHAT ARE THE ANALYTICAL AND STATISTICAL AND RESEARCH CHALLENGES OF BEING ABLE TO COMPARE ACROSS THESE DATASETS? SO HOW CAN WE REUSE ASPECTS OF PROTOCOLS BUT ALSO SET THINGS UP SO THAT EVEN WHEN WE ARE USING DIFFERENT INSTRUMENTS WE HAVE CAPTURED THE RIGHT MEAT DATA AND RIGHT CAPE BUILT TO COMPARE ACROSS THEM? SO IT WILL BE A COMBINATION OF BOTH THE PLATFORM WILL PROBABLY BE LARGER THAN WHAT WE ARE AIMING FOR. LET'S START WITH A MILLION AND SHOW WE CAN DO IT AND THEN MAKE THAT A ROBUST PLATFORM. AND AT THE SAME TIME CONNECT WITH OTHERS SO WE CAN COMPARE ACROSS LARGER DATASETS BUT I THINK YOU'RE RIGHT. [ LOW AUDIO ] >> WE MAY HAVE TO CUT IT OFF AFTER THIS TO GO TO BREAK. >> SO YOU MAY ALREADY BE THINKING THROUGH THIS. ONE OF THE THINGS I WAS LISTENING TO IS TO MAKE SURE THAT YOU'RE BRINGING IN SMALL MINORITY TECHNOLOGISTS INTO THIS. THERE WILL BE AN ENORMOUS AMOUNT OF INFORMATION TRANSFER. AND WHAT YOU DON'T WANT TO HAPPEN IS TO HAVE THE MINORITY POPULATION BE THE END CONSUMERS BUT NOT INVOLVED IN THE BUILD OUT. I LOVE MICROSOFT. I LOVE APPLE. BUT WE ALSO HAVE GOT TO TRAIN AND DEVELOP SOME SKILLSETS IN DIVERSE COMMUNITIES AND THIS SOUNDS LIKE AN EXTRAORDINARY OPPORTUNITY TO HAVE SOME KNOW TRANSFER AND DEVELOPMENT. SO YOU MAY ALREADY BE DOING IT BUT I WOULD CERTAINLY ENCOURAGE IT. >> HERE HERE. THERE ARE MANY ASPECTS OF THE PROGRAM AND AGAIN, THIS HAS BEEN INSPIRED FROM THE PRESIDENT HIMSELF TO MAKE SURE THAT -- WE HAVE THIS -- I KEEP TELLING THE TEAM WE HAVE TWO MISSIONS. ONE IS THE MISSION I DESCRIBED BUT THE SECOND MISSION IS TO BE PART OF A PORTFOLIO OF PRECISION MEDICINE EFFORTS THAT INCLUDE PAYMENT REFORM, THAT INCLUDE CARE DELIVERY REFORM, THAT WE WANT TO USE THE INVESTMENT TO DISRUPT THINGS IN A POSITIVE WAY. I MEAN, AND SO WE ARE LOOKING AT WAYS IN WHICH ALL THE WORK WE ARE DOING WITH THE FQHCs CAN BRING MORE FEDERALLY QUALIFIED HEALTH CENTERS INTO THE MIX AND ABLE TO DO RESEARCH ON THEIR OWN. WE ARE LOOKING AT STEM EDUCATION PROGRAMS TO TEACH CITIZEN SCIENTISTS AND MINORITY AND UNDER STUDIED COMMUNITIES ON HOW THEY CAN ACTUALLY EVEN DO SIMPLE ANALYSIS ON TOP OF THAT. SO -- >> I'M ALSO TALKING ABOUT COMPANIES THEMSELVES. IT IS REALLY IMPORTANT. I GET THE TRAINING OF SCIENTISTS. BUT I THINK IT IS ALSO EXTRAORDINARILY IMPORTANT THAT COMPANIES THEMSELVES -- BECAUSE WHEN YOU COME INTO THE MINORITY COMMUNITY TO RECRUIT AND IT SEEMS AS IF WHAT YOU'RE DOING IS JUST LIFTING INFORMATION OUT BUT YOU'RE NOT BRINGING ANYTHING TANGIBLE BACK IN, YOU'RE GOING TO GET PUSHBACK. I'M JUST SAYING TO YOU THAT IS A SMART THING TO DO FROM THE BEGINNING. >> WE WILL LAUNCH IN ABOUT FOUR WEEKS A MARKETPLACE INFRASTRUCTURE THAT IN ONE OF THE THINGS IT IS DOING IS TRYING TO ENLIST COMPANIES FROM AROUND THE COUNTRY TO TALK ABOUT AND SHARE CAPABILITIES THAT THEY HAVE THAT WE CAN ADD ON TO THE PLATFORM EITHER DIRECT LEAR OR THIRD PARTIES CAN DO ON TOP OF THAT -- DIRECTLY. THAT IS ONE PATH. >> SO GREAT TO HEAR ALL THIS WILL PROGRESS AND CONGRATULATIONS ON YOUR NEW POSITION. >> THANK YOU. >> I'M SO USED TO YOU SITTING RIGHT NEXT TO ME. >> YOU CAN MOVE THE CHAIRS AROUND A LITTLE BIT. [ LAUGHS ] LIKE PEOPLE ARE MOVING THIS WAY. >> SO, I TALKED ABOUT THIS BEFORE AND THE WORK I'M DOING WITH THE GSA, AND THE QUESTION IS, HOW DO YOU GO ABOUT -- WHAT IS THE PROCESS FOR LOOPING IN OTHER GOVERNMENT AGENCIES WHO ARE ALREADY HAVE ESTABLISHED -- YOU MENTIONED THE MILLION VETERANS PROGRAM BUT WE HAVE ESTABLISHED A METH TO MERGE MASSIVE LARGE DIFFERENT DATA STREAMS INCLUDING REALTIME ENVIRONMENTAL MEASURES WHICH COULD BE EASILY JUST PLUNKED -- WE HAVE GONE THROUGH THE PROBLEMS AND ISSUES OF RECRUITING, GETTING PARTNERS, GETTING BUY-IN, SO WE COULD HELP YOU. >> THERE IS VERY PRACTICAL WAYS OF PUTTING -- WE CAN INCLUDE PEOPLE OR ARE INCLUDING PEOPLE ON OUR WORK GROUPS THAT THE WORK GROUPS ARE PRIMARILY AWARDEES RIGHT NOW BUT WE ARE PULLING OUT TO DIFFERENT GOVERNMENT AGENCIES AND OTHER EXPERTS ON DIFFERENT STUDIES INTO THOSE WORK GROUPS TO HELP INFORM THE THREADS. AT SOME POINT WE WILL HAVE A FORMAL LIAISON PROGRAM. THERE IS ABOUT 9 PROGRAMS I WANT TO LAUNCH BUT RIGHT NOW THERE IS REALLY ABOUT 8 FULL-TIME PEOPLE HOLDING ALL THIS UP AND THEN ALL THE AWARDEES AND PART OF THE CHALLENGE IS RECRUITING FOR OUR OWN INTERNAL NIH STAFF TO MANAGE ALL THE PROGRAMS. WE HAVE A HEAT MAP OF ALL OF THESE PLACES WE WANT TO FORM LINKS TO AND PULL INTO THE WORKING GROUPS AND OTHER FORUMS. AND WE ARE DEFINITELY EXHIBITING THE SPIRIT OF -- WE WILL NOT EXHIBIT THE SPIRIT OF NOT INVENTED HERE. THE ONLY WAY WE WILL BE SUCCESSFUL IS TAKE THINGS THAT HAVE BEEN WELL TESTED OR WELL VETTED IN OTHER DOMAINS AND WHERE THE PROMISE OF SCALE ADDS VALUE. IN SOME CASES THE SCALE OF A MILLION ISN'T THE RIGHT TOOL TO USE FOR THE JOB. SO WE WANT TO MAKE SURE THAT WE ARE USING THE RIGHT TOOL FOR THE JOB IN THAT REGARD. >> THANK YOU FOR YOUR PRESENTATION. I'M WAY MAN, REPRESENTING THE NAVY SURGEON GENERAL AND I WANT TO APPLAUD YOUR VERY APPROPRIATE PRESENTATION AT A HIGH LEVEL OF WHAT THE PROCESS IS AND WHAT YOUR VISION IS. I GUESS THE QUESTION REALLY IS, WHAT IS YOUR STRATEGY TO GET PAST THE POLICY AND OVERSIGHT INDIVIDUALS WHO OBVIOUSLY MAN THE 17 FEDERAL AGENCIES AND ACTUALLY GET YOUR MESS ANNUAL TO THE OPERATIONAL OR MISSION ORIENTED GROUP. AND MY ARMY AND AIR FORCE COUNTERPARTS ARE HERE TO BACK UP THE SUGGESTION THAT DOD IS ORGANIZED IN SUCH A MAP THEY'RE PRESENTING TO DOD LEADERSHIP OR TO HEALTH AFFAIRS DOES NOT REALLY GET YOUR MESSAGE INTO THE SERVICES. [ LAUGHS ] SO THAT'S THE QUESTION AS TO WAYOUR STRATEGIES MIGHT BE IN THAT REGARD. >> IT'S FUNNY AS WE ARE WORKING ON THE DRAFT OF THESE TRANSITION PLANS FOR THE SECRETARY AND FOR THE WHITE HOUSE, THIS ISSUE TIMES ALL THE OTHER AGENCIES HAS COME OUT. AND THERE IS AN ACRONYM SOMETIMES USED AND THEY'LL SAY WE NEED THE RPs. WHAT'S THAT? THE REAL PEOPLE THAT DOT WORK. [ LAUGHS ] SO, WE ARE BASICALLY TRYING TO REACH -- WE NEED THE AIR COVER SUPPORT OF THE HIGHER LEVEL OFFICIALS BUT WHAT WE HAVE BEEN TRYING TO IDENTIFY PARTICULARLY BEFORE THE ADMINISTRATIONS CHANGE ARE WHO ARE THE RPs ON THE GROUND WHO WILL ENDURE ADMINISTRATION CHANGE AND QUITE FRANKLY THOSE THAT WILL HELP OPERATIONALIZE THESE THINGS. SO IN SOME LEVELS IT'S BLOOD SWEAT AND TEARS TO BUILD RELATIONSHIPS WHICH IS WHAT THE WORLD IS ABOUT, AND THERE IS SOME PROCESS TO DO THAT BUT THAT'S REALLY AT THE HEART OF WHAT WE ARE TRYING TO DO. FORM VALUED AND VALUE PROPOSITION RELATIONSHIPS WHERE THE COHORT PROGRAM MATTERS AND THEY MATTER TO THE COHORT PROGRAM. AND IN SOME CASES THAT'S NOT THE CASE. I MEAN THERE IS OTHERS WHERE IT'S AGAIN, THE SCALE OF THE MILLION WON'T SOLVE YOUR PROBLEMS. THIS THE WILL BE A DISTRACTION FOR YOU BUT FOR THOSE WHERE THIS IS GOING TO HELP, THAT IS OUR PLAN AT THIS POINT. >> THANK YOU. >> I'M GOING TO USE CHAIR'S DISCRETION TO EXTEND THIS A LITTLE BIT BECAUSE I THINK THIS DISCUSSION WILL BE FOUND RELEVANT TO WHAT WE ARE TALKING ABOUT IN LONG-RANGE PLANS AND I WANT TO CUT OFF ERIC HOROWITS PREMATURELY. BECAUSE I THINK PEOPLE ON THE PHONE SHOULD HAVE A CHANCE TO SPEAK. ERIC DO YOU HAVE A QUESTION? THE FLOOR IS YOURS. IF YOU'RE ON MUTE, PLEASE GET OFF MUTE. HAVE WE LOST ERIC? >> THANK YOU, BOB. CAN YOU HEAR ME? >> YES. >> I'M JUST CURES ABOUT THE MAYBE HIGH - EYE DIDN'T KNOW THE HISTORY WITH YOUR STORY ABOUT THE CANCER. JUST TO UNDERSTAND BETTER THE DISTRIBUTION LIST AND HOW TO ADDRESS BIASES AND WHO STEPS FORWARD IN TERMS OF THE DISTRIBUTION OF PEOPLE IN THE ACTUAL COHORT. >> I THINK I GOT THE GIST OF WHAT YOU SAID. I DIDN'T HEAR THE BEGINNING OF IT BECAUSE IT WAS LOW VOLUME. ARE YOU ASKING WHETHER THE -- WHAT ARE THE STRATEGIES TO MAINTAIN THE DIVERSITY WITHIN THE COHORT? WITH DIFFERENT COMMUNITIES? IS THAT THE ESSENCE OF IT? >> RIGHT. I'M CURES ABOUT HOW WE DEAL WITH SELECTION BIAS. >> ESPECIALLY AMONG THE DVs. SO ONE OF THE WAYS -- SO I HAD TO POINT OUT TO EVERYBODY THAT IT'S LIKE OKAY, IF YOU DO THIS BIG LAUNCH WITH A PRESIDENT OR MULTIPLE PAST PRESIDENTS COMING TO IT AND YOU HAVE THE ENTIRE NATIONAL PRESS CORPS TO REALLY DO THIS, WHICH IS AN EXCITING POSSIBILITY AND THERE ARE TWO CHALLENGES. ONE IS THERE IS A BIG PART OF THE COUNTRY THAT PLAYING OUT THE GOVERNMENT ASPECT OF THIS IS NOT GOING TO EXACTLY RESONATE WITH THEM AND THE SECOND CHALLENGE IS, OH, MY GOSH, WHAT IF WE HAVE A SUCCESS CATASTROPHE IN 15 MILLION PEOPLE SIGN UP ON THE WEBSITE IN THE FIRST DAY? WE'LL MAKE SURE THE WEBSITE CAN TAKE 15 MILLION PEOPLE. THAT PART I LEARNED FROM PAST MISTAKES. SO WE REALLY DESCRIBED -- WHAT WE COME UP WITH A 3 TIER MODEL. WE HAVE TO COME UP WITH BETTER NAMES FOR THIS. THE FIRST LEVEL OF TIER IS JUST SOMEBODY THAT IS INTERESTED IN LEARNING MORE AND JUST CLICK HERE AND WE DEVELOP A WHOLE SERIES OF PUBLIC LECTURES, CONTENT STREAMS THAT JUST FOR PEOPLE WHO WANT TO KNOW AND LEARN ABOUT WHAT PRECISION MEDICINE IS. THERE IS QUITE A STREAM OF CONTENT THAT WE HAVE GOT COMING THROUGH MULTIPLE CHANNELS. THE SECOND TIER IS THOSE WHO VOLUNTEER AND SAY I'M REALLY INTERESTED AND WILL FOCUS ON DELIVERING WHAT WE CALL PPI, PARTICIPANT PROVIDER INFORMATION WITH SURVEYS. WE COULD DO SURVEYS OF 10-15 MILLION PEOPLE WITH THE DIFFERENT INSTRUMENTS THAT WE HAVE GOT. AND THEN THE THIRD TIER IS THOSE WHO GO INTO THE FULL STUDY TO DO BIOSPECIMEN AND THE RANGE OF OTHER KINDS OF THINGS THAT HAPPEN IN TIME. WE DID THIS FOR PRACTICAL REASONS AND THEN AS YOU START TO THINK ABOUT IT, THIS REALLY HELPS US TO ACHIEVE OUR DIVERSITY GOALS AS WELL BECAUSE IF YOU HAVE 5-10 MILLION PEOPLE IN TIER 2 WHO SAY I REALLY WANT TO BE IN TIER 3, IT ALLOWS US TO SORT OF HAVE THE TIME TO RUN THE DIFFERENT VECTORS OF ANALYTICS ON TOP OF IT TO SAY WHO DO WE WANT TO INVITE? AND NOW WE ARE THINKING ABOUT HOW TO INCORPORATE THAT SAME PARADIGM WITHIN THE HEALTH PROVIDER ORGANIZATION PATH? SO IT'S DEFINITELY SOMETHING WE TAUGHT ABOUT. THERE WERE A LOT OF PEOPLE WORRIED ABOUT WHAT THEY CALL ADVOCACY GROUP PACKING SO THE CANCER FOLKS ARE SO EFFECTIVE THAT IT IS ALL CANCER PEOPLE. I'M LESS WORRIED ABOUT THAT. AND I THINK WHAT WE ARE NOW DOING IS THE ABILITY TO CATCH ALL PEOPLE AND WE WANT THOSE ADVOCACY GROUPS PUSHING AND THE MORE PEOPLE THAT WE CAN GET INTO TIER 1 AND TIER 2 THE BETTER AND THEN IT HELPS US TO SELECT FOR DESIST NETIER 3. >> I'M GOING TO SQUEEZE IN ONE MORE QUESTION. >> SO AS AN RP FOR PA, I'LL SAY THAT WE ALSO NEED A POLITICAL APPOINTEES TO DO SOME OF THE WORK TO SIMPLIFY AND RATIONALIZE THE REGULATORIY AND LEGISLATIVE BARRIERS. WE HAVE LAWYERS THAT WILL SAY, YOU CAN'T SHARE THAT BIT OF INFORMATION WITH HHS BECAUSE IT'S APPROPRIATION LAW ISSUES, THE FUNDING COME FROM DIFFERENT POTS. THOSE THINGS LITERALLY OCCUR AND THAT IS THE VALUE OF THAT RELATIONSHIP. >> THAT'S RIGHT. I DO WORRY ABOUT -- QUITE FRANKLY IT WOULD BE NICE IF THE NEXT PRESIDENT PAID A LITTLE LESS ATTENTION BUT THE SUPPORT HAS BEEN AMAZING. AND HELPING TO SORT THROUGH THOSE ISSUES CROSS AGENCIES HAS BEEN A KEY ROLE THE WHITE HOUSE PLAYED AS WELL AS THE SECRETARY IN THE CASES. EVEN JUST WORKING ACROSS -- >> THIS ISSUE PLAYED OUT IN THE BEGINNING OF HEALTH REFORM WITH THE WHOLE ISSUE OF MULTI-TIERED CLAIMS DATA AND SIMPLIFYING SHARING OF DATA FROM HEALTH SERVICE RESEARCH AND BIOMEDICAL RESEARCH AND YOU HAD AN INTERACTION OF THE COMMON RULE, PRIVACY ACT, HIPPA AND THEN UNIQUE AGENCY SPECIFIC REGULATIONS WHICH WE IN VA AND DOD ARE ALL PAINFULLY AWARE OF. THAT BUSINESS IS STILL UNFINISHED. AND I THINK THIS MAY BE THE OPPORTUNITY TO ADVANCE A BETTER DISCUSSION ON THE SUBJECT. >> I AGREE AND IT CERTAINLY OFTEN THE PMI COHORT PROGRAM HAS BEEN USED AS A USE CASE TO HELP TO TRY TO MOVE SOME OF THESE FORWARD. WE JUST FINISHED OUR STATE-BY-STATE ANALYSIS AND WE HAVE GOT A WHOLE THORNY SET OF ISSUES OF RETURN OF INFORMATION, VARIABILITY IN DIFFERENT STATES AND DATA SHARING RULES IN DIFFERENT STATES. SO I PUT THIS BACK UP, IT MAY BE AT THE BOTTOM BUT DON'T THINK OF THIS LAST. THINK OF IT AS A FOUNDATION. THE POLICY AND LEGAL ISSUE WE HAVE TO WORK THERE AND THERE IS SIGNIFICANT INVESTMENT TO MAKE THAT HAPPEN ARE ENORMOUS TO PULL THIS OFF. THIS IS ANOTHER EXAMPLE WHERE DOING A NATIONAL STUDY THAT IS TRYING TO CREATE THIS NATIONAL TREASURE GIVES YOU SOME VIS BUILT TEE TO TRY TO GET SOME OF THESE SETTLED -- VISIBILITY. >> THE PROBLEM IS IT'S BORING. NOT GREAT PRESS RELEASE. >> IT IS BORING. >> I WANT SAY ONE THING. WHEN YOU ARE READY TO ASK PEOPLE TO JOIN, IN LARGE NUMBERS, THEN I THINK YOU PROBABLY KNOW THAT THE NATIONAL NETWORK OF LIBRARIES OF MEDICINE AND CONNECTIONS TO PUBLIC HEALTH AND HOSPITALS AND EVERYTHING IS PROBABLY A RESOURCE TO GET THIS WORD OUT VERY BROADLY, VERY QUICKLY AND A LOT OF THEM HAVE EXISTING RELATIONSHIPS WITHIN THE COMMUNITY. SO I'M JUST WAITING FOR YOU TO SAY, I WOULD REALLY LOVE FOR ALL THESE PEOPLE THE WORD OUT AND I THINK THEY WILL DO A GOOD JOB. >> IN FACT I'M INTENDING AND HOPING TO FOLLOW-UP WITH A SEMINOLE COUNTY SET OF YOU WITH SOME OF MY SENIOR FOLKS. I KNOW ENOUGH TO BE DANGEROUS FROM THE VARIOUS PROGRAMS AND GRANTS THAT CAME THROUGH AS I SAT IN THIS CHAIR FOR THE YEAR OR SO THAT I DID. BUT IMAGINE THAT FROM EVERYTHING FROM ANALYTICS AND EHR STANDARDS AND AS WELL AS GETTING THE WORD OUT, THERE IS MULTIPLE POINTS OF INTERSECTIONS. SO I DEFINITELY WANT TO PULL THOSE THREADS TOGETHER AND PUT THEM INTO A BOW. >> SO THANK YOU VERY MUCH ERIC. >> THANK YOU. >> WE ARE GOING TO CALL YOU ON. OBVIOUSLY, THIS USE CASE YOU'RE PRESENTING FOR PULLING A LOT OF DIFFERENT THREADS TOGETHER IS GOING TO BE VERY VITAL IN OUR OWN FILING AND I THINK YOU WILL BE ROPED INTO SOME OF THESE. >> SOUNDS GOOD. >> SO THANK YOU AGAIN. I THINK WE'LL TRY TO CATCH-UP A LITTLE BIT HERE. FIRST YOU'LL SEE IN YOUR BOARD PACKAGE THE MINUTES OF THE MAY 2016 MEETING. I HOPE YOU ALL READ THOSE THROUGHLY AND I'M LOOKING FOR A MOTION TO APPROVE. AND A SECOND? >> SECOND. >> ALL IN FAVOR SAY YEA OPPOSED? OKAY. MOTION CARRIED. WE HAVE A LIST OF FUTURE MEETINGS THAT ARE CONFIRMED FOR THE FEBRUARY MEETING AND THE MAY MEETING. AND THERE IS A PROPOSED DATE OF SEPTEMBER 12-13 FOR THE FALL MEETING. ANYBODY -- THERE ARE OTHER POTENTIAL CONFLICTING MEETINGS LISTED HERE. NONE OF THEM OVERLAP. I THINK IT AVOIDS THE RELIGIOUS HOLIDAYS. SO IS THERE ANY CONCERN ANYBODY HAS WITH THOSE DATES? SO HEARING NONE, WE WILL SAY THAT IS ALSO APPROVED. OKAY. IT'S A PLEASURE TO PRESENT THE REGENTS AWARD. SO THE REGENTS AWARD FOR SCHOLARSHIP OR TECHNICAL ACHIEVEMENT WAS ESTABLISHED IN 1970 BY THE BOARD OF RENALLENTS TO RECOGNIZE AND STIMULATE INDEPENDENT CREATIVITY LEADING TO SCHOLARLY AND/OR TECHNICAL ADVANCEMENTS THAT ENRICH BIOMEDICINE. THIS IS THE HIGHEST HONOR THE BOARD CAN GIVE TO A MEMBER OF THE STAFF. THIS AWAR GOADS TO DR. QUESTIONSEL MAN THE SENIOR SCIENCE SOCIAL AN LIST IN THE SPECIALIZED INFORMATION SERVICES DIVISION. DR. KESSEL MAN RECEIVES THIS YEAR'S AWARD FOR SUSTAINED EXCELLENCE IN RESEARCH, SCHOLARSHIP AND MENTORING IN THE FIELD OF HEALTH INFORMATION FOR THE PUBLIC AND IN PARTICULAR FOR CO-EDITING THE BOOK, MEETING HEALTH INFORMATION NEEDS OUTSIDE OF HEALTH CARE, OPPORTUNITIES AND CHALLENGES. CONGRATULATIONS DR. KESSEL MAN. [ APPLAUSE ] AND WITH THAT, WE HAVE A COFFEE BREAK? ON TIME. WE HAVE A 20 MINUTE COFFEE BREAK. BE HERE AT 10:30. THANK YOU ALL. >>> GOOD MORNING. MANY OF YOU LEARNED YESTERDAY ON THE SECOND ELDEST OF 10 CHILDREN SO I KNOW HOW TO MAKE ROOMS QUIET. IT STARTS WITH ASKING WHOSE TURN IS IT TO DOT DASHES? I WANT TO -- DISHES. I WANT TO GREET THOSE WHO I HAVEN'T GOTTEN TO GREET PERSONALLY AND TO ACKNOWLEDGE OUR BOARD OF RENALLENTS. YOU'RE WORK FOR US AND YOUR PROBING ABOUT US IS CRITICAL TO OUR FUTURE -- BOARD OF REGENTS. TODAY I'M HERE TO LAUNCH THE THINKING ABOUT OUR STRATEGIC PLANNING ACTIVITIES. THE NATIONALY LIBRARY OF MEDICINE HAS A LONG HISTORY OF DEVELOPING LONG RAGE PLANS TO LED TO MOST OF THE AMAZING INFORMATION RESOURCESSED IN WORLD. NOW WE ARE REDS TOW DO THIS AGAIN. IDE LIKE TO, BY WAY OF INTRODUCTION TALK A LITTLE BIT AND SHOW YOU THE VIDEOS WE SHOWED YESTERDAY AFTERNOON ABOUT THE LIBRARY AND WHAT IT IS CURRENTLY DOING. I'M THATCHINGFUL TO THE AUDIO DIVISION AND ANN AND JOHN WHO IS THE WAME THROUGH MANY ITERATIONS OF THIS. ... ... ... ... ... ... EVERYTHING YOU SEE HERE BUILDS OUR PRESS AND HE WANT WHEN WE GO TO THE FUTURE IT WILL BE DRIVEN BY WHERE WE WERE IN 1956. THE LEGISLATION THAT BEGAN IN THE NATIONAL LIBRARY OF MEDICINE IDENTIFIED ITS ROLE AS DOING TWO THINGS ASSISTING THE ADVANCEMENT OF MEDICAL AND RELATE SCIENCES AND AID THE DISEASES DISEASES NAMES AND EXCHANGE OF SCIENTIFIC INFORMATION IMPORTANT TO THE PROGRESS OFFED AND PUBLIC HEALTH. THESE WISE VISIONARIES MEANT MEDICINE BROADLY AND ENUMERATED IN THE LAW SUCH ASPECTS AS PUBLIC HEALTH, NURSING, DENTISTRY, WHICH IS REALLY ALLOWED US TO HAVE A VERY BROAD MANDATE TO SERVE MANY. WE ARE MOVING INTO A TIME OF PLANNING IN AN ENVIRONMENT THAT IS FULL OF EXCITEMENT, OF CHALLENGE AND OF RISK. AND THE BOARD OF RENALLENTS IS RESPONSIBLE FOR GUIDING OUR STRATEGIC PLAN AND BRINGING TO FRUITION WITHIN ABOUT A YEAR, THIS EFFORT OF PLANNING TO CREATE THE FUTURE OF THE LIBRARY. SO I'D LIKE TO GIVE YOU MY VISION AGAIN FROM ONE OF THE VIDEOS YESTERDAY OF THE FUTURE THAT I BELIEVE NLM MIGHT BE EN COUNTERING AND WHAT OUR STRATEGIC PLAN MIGHT BE IDENTIFYING AS CRITICAL. THANK YOU. IT IS OUR RESPONSIBILITY AND RIGHT AND TALENT THAT WILL BRING THE RIGHT INFORMATION AT THE RIGHT TIME TO THOSE IN NEED WHETHER A REACHER TRYING TO EVALUATE A GEETNETIC STRUCKURAL OR A MOM TRYING TO FIGURE OUT IF A KID SHOULD GO TO THE SCHOOL OR DOCTOR FIRST. THE CHARGE I'M GIVING YOU WHICH WE'LL GO IN DETAIL AS MY COLLEAGUES SPEAK TO YOU, IS TO CREATE A DYNAMIC AND VIBRANT STRATEGIC PLAN FOR THE NATIONAL LIBRARY OF MEDICINE. THERE ARE SOME THINGS THAT I WOULD HOPE TO SEE IN THAT PLANNING PROCESS. THERE ARE SOME THINGS THAT ARE REPORTS TO THE DIRECTOR OF NIH COLLEAGUES WROTE A YEAR AGO THAT WE NEED TO SEE IN THIS STRATEGIC PLAN. SO FIRST I'M ASKING YOU TO PLEASE DRAW ON THE TALENTS OF THE 1700 MEN AND WOMEN WHO WORK AT THE NATIONAL LIBRARY OF MEDICINE WHO HAVE EXPRESSED AN INTEREST, WILLINGNESS AND A TALENT POOL THAT WE WANT TO USE TO CREATE THAT STRATEGIC PLAN. NEXT I WANT TO REMIND YOU WE WERE CALLED ON AND WE'LL HEAR MORE IN DEPTH ABOUT THIS, TO DO A FUNCTIONAL AUDIT TO UNDERSTAND WHAT WE DOING AND I HAVE ALREADY CHARGED DARLENE TO BEGIN TO LOOK FINANCIALLY AT WHERE DO WE SPEND OUR MONEY? SO WE ARE STARTING TO LOOK INTERNALLY. THIRD, AND VERY IMPORTANT TO ME IS I WANT US TO REMEMBER THAT WE SERVE FROM INFANTS TO ELDERS FROM SCIENTISTS TO SCHOOLKIDS. WE HAVE A HUGE CONSTITUENTS TOW ENGAGE AND WE HOPE THAT YOU'LL BE ENGAGING THAT WHOLE CONSTITUENCY AND FINALLY, I TRUST THAT YOU WILL SUPPORT ME IN WORKING WITH TODD DANIELLE SON TO EVALUATE THE PHYSICAL PLAN. YALE THIS IS A BEAUTIFUL AND GLORIOUS BUILDING, IT NEEDS A LITTLE BIT OF WORK. AND I'D LIKE TO BE ABLE TO DO THAT NOW I BELIEVE I WILL TURN OVER TO DAN? I'M NOT TURNING IT OVER TO DAN. I'M TURNING IT OVER TO BOB. THANK YOU VERY MUCH. WE'LL BE BACK IN A YEAR TO HEAR ABOUT THIS. THANK YOU. [ APPLAUSE ] GREAT INTRODUCTION. WE WILL BE TURNING IT OVER TO DAN SHORTLY. I WANTED TO TELL YOU WHERE WE ARE SO FAR. WE HAD A FEW DISCUSSIONS, MYSELF AND PATTY AND BETSY AND OTHERS, WHO WILL BE HELPING TO PROVIDE STAFFING FOR THE VETTING PROCESS AND THEN WE APPOINT AID SUBCOMMITTEE WHICH IS THE PLANNING COMMITTEE, PLANNING SUBCOMMITTEE, AND DAN AND -- HAVE AGREED TO CO-CHAIR THAT AND SANDA AND I ARE ALSO PARTICIPATING IN THAT. THAT DOESN'T MEAN THAT THE REST OF THE BOARD IS EXCLUDED. WHAT WE WANT TO DO IS BE SURE THAT THE PROCESS KICKING OFF TODAY WILL ENGAGE UPAND THE AT VARIOUS POINTS IN TIME HELP US TO PARTICIPATE AND CARRY OUT THIS PROCESS. SO, WHAT I HAVE ASKED DAN TO DO, SINCE HE HAD THE PLEASURE OF -- WERE YOU IN -- >> I WAS ATS NCI AND IT WAS THE LONG-RANGE PLAN THAT CHANGED MY LIFE AND A NUMBER OF OTHER PEOPLE'S LIVES. [ LAUGHS ] >> BECAUSE DAN SHORTLY AFTER THAT, RAN THE LISTER HILL CENTER. YOU ALMOST MOVED YOURSELF INTO THE JOB, I GUESS. BUT ANYWAY, THEN THERE WAS ANOTHER PLANNING PROCESS IN 2005, 6, WHICH IS AN UPDATE. AND I THINK HAVE YOU SOME COMMENTS THAT YOU'RE GOING TO PRESENT TO US ABOUT WHAT THOSE DID AND WHAT THEY ENVISIONED AND TO USE THOSE SORT OF AS A SPRINGBOARD FOR CANNING ABOUT HOW WE GO ABOUT IT IN THE FUTURE. FOR THINKING. >> SO WHAT I GAVE MYSELF THE HOMEWORK ASSIGNMENT OF LOOKING ACROSS ALL OF THE LONG-RANGE PLANS GOING BACK TO THE ORIGINAL IN 1985. IT ACTUALLY WAS FRESHENED UP WITH UPDATES ALONG 1999 AND AS WELL AS THESE SPECIAL TOPIC REPORTS THAT CAME OUT TO ADDRESS THINGS THAT WERE EITHER UNDER REPRESENTED ORIGINALLY IN THE 586 PLAN OR WHERE THERE WAS ENOUGH CHANGE IN THE ENVIRONMENT THAT IT WAS WORTH REVISITING THOSE TOPICS. AND SO, THE GOOD NEWS IS THAT WE STAND ON THE SHOULDERS OF VERY CAPABLE GROUPS OF HUNDREDS OF INDIVIDUALS WHO VERY THOUGHTFULLY CONSIDERED BOTH THE OPPORTUNITIES AND THE SEA CHANGE THAT IS MIGHT OCCUR OVER THE SPAN THAT THEY WERE CHARGED WITH. AND WE HAVE A PARTICULAR NUANCED AND UNEXPECTED BENEFIT THAT THE PLANNING PANEL OF 2005 ISSUED THE REPORT FOR 2006-2016, WAS ASKED TO PLAN FOR A 10-YEAR HORIZON. THEY TOOK IT UPON THEMSELVES TO SAY, NOT GOOD ENOUGH. WE ARE GOING TO DO 20. AND SO, THEY HAD EARLY ON, AS IS INCLUDED IN THAT REPORT, A SEPARATE VISIONING EXERCISE OF ASKING THEMSELVES WHAT WOULD THE WORLD LOOK LIKE IN 2025? AND I JUST READ IT AGAIN THIS MORNING AT 5:30 AND WITH PERHAPS ONE OR TWO WORDS, IT APPEARS TO HAVE BEEN WRITTEN YESTERDAY. AND I THINK IT SUGGESTS SOME METHODOLOGY FOR HOW WE MIGHT PROCEED TO, RATHER THAN AS PLANNING GROUPS OFTEN DO, ASSUME THEY HAVE A CLEAN SHEET OF PAPER AND WE SHOULD IMAGINE THE NLM DIDN'T EXIST AND WHAT SHOULD IT LOOK LIKE; WE HAVE THE OPPORTUNITY IF WE CHOOSE TO PURSUE THAT, OF ESSENTIALLY LOOKING AT THE MOST RECENT SET OF GUIDANCE THAT HAS COME FROM GROUPS SUCH AS THE LIBRARY'S OWN STRATEGIC PLANNING 2005-2006 AND LAST YEAR'S REPORT FROM THE ACD WORKING GROUP, REPORTING TO THE NIH DIRECTOR, WHICH I ALSO READ IN THE LAST TWO DAYS AND I WAS EXPECTING TO FIND A NUANCED CRITICAL ASSESSMENT OF STRENGTHS AND WEAKNESSES. AND INSTEAD, IT WAS A LOVE LETTER TO THE NLM. I MEAN IT WAS A BOUQUET OF ROSES ABOUT EVERYTHING THE INSTITUTION WAS DOING. AND THE SPECIFIC TACTICAL RECOGNITIONS IT MADE WHICH WERE VERY FEW, WERE THINGS THAT SEEM EMPOWERING IN ADDITIONAL WAYS SUCH AS FOR EXAMPLE, FORMERLY RECOGNIZING THE NLM AS THE FOCAL POINT FOR DATA SCIENCE AT THE NIH AND BRINGING THE ADMINISTRATION, VARIOUS PROGRAMS, RELATED TO DATA SCIENCE EDUCATIONAL AND RESEARCH AND DEVELOPMENT, UNDER THE NLM'S SPONSORSHIP AND MANAGEMENT. WHAT I'M GOING TO DO IS OPEN THE DISCUSSION ACTUALLY BOB AND I TALKED ABOUT JUST WANTING TO GIP WITH BRAINSTORMING AND HARVEST EVERYONE INITIAL RESPONSE OF IDEAS ABOUT HOW WE MIGHT DO IT BUT WHAT WE THINK THE MOST IMPORTANT ISSUES TO ADDRESS IN 2016 WOULD BE AND TO LOOK AT THE WAY THAT THE PREVIOUS LONG-RANGE REPORTS APPROACHED THEIR TOPIC SEGMENTATION. SO EVERY ONE OF THEM HAD SUBCOMMITTEES AND PLANNING GROUPS THAT WERE FOCUSED ON SPECIFIC TOPICS AND SPECIFIC GOALS. AND I AM VERY MUCH IMPRESSED WHEN YOU START AN EFFORT LIKE THIS AND GIVE IT A SET OF IF YOU WILL, SILOED LABELS, YOU EITHER ENABLE OR PREJUDICE THE OUTCOMES YOU'LL GET BY WHAT YOU CALL THE PLANNING ACTIVITIES THAT ARE GOING TO BE EMBEDDED IN THE LARGER PLAN. SO, I THOUGHT IF WE GET THAT RIGHT, IF WE CAN GET THE AREAS WHERE WE OUGHT TO FOCUS OUR PLANNING ATTENTIONS BECAUSE THERE ARE PARTICULARLY IF THERE IS -- THE WORLD CHANGED SUCH A WAY THAT THE OLD CLASSIFICATION OF PLANNING AREAS ACTUALLY DOESN'T WORK AGAIN. THEN WE ARE SORT OF AT RISK OF BUILDING MOMENTUM IN A DIRECTION THE WORK PRODUCT IS, WE ARE NOT HAPPY WITH IT BECAUSE WE SORT OF ASK THE WRONG SET OF QUESTIONS AND WE GOT THE RIGHT ANSWERS TO THE WRONG SET OF QUESTIONS. I NORMALLY WOULD CHOOSE TO DO THISES IS A FORM OF POWERPOINT POISONING BUT I'M JUST GOING TO USE MICROSOFT WORD BECAUSE THERE IS KIND OF TOO MANY WORDS TO FIT ON POWERPOINT SLIDES. AND IF I'M LUCKY HERE AND I SEND AN IMAGE. SO THIS IS AN OLDER VERSION OF MICROSOFT WORD WHICH IS ACTUALLY USEABLE. AND SO THIS WAS MY LITTLE SELF ASSIGNED HOMEWORK ASSIGNMENT. TO LOOK AT ACROSS THE THREE MAJOR PLANNING TALKS AND THEN I HAVE THE LAST ROW IN THE TABLE IS HOW IT IS CONSTRUCTED. IN 1885, 86, THERE WAS A PLANNING EFFORT THAT INVOLVED OVER 200 PEOPLE AND THEY WERE DIVIDED INTO FIVE PLANNING AREAS THEY WERE TITLED BUILDING THE LIBRARY'S COLLECTION, LOCATING AND ACCESSING THE LIT TERAND OBTAINING FACTUAL INFORMATION FROM THE DATABASES, MEDICAL INFORMATICS AND INFORMATION TECHNOLOGY FOR THE HEALTH PROFESSION EDUCATION. 3 OF THOSE ARE VERB PHRASES OR 4 OF THEM ARE VERBS SO, BUILD CAN, LOCATING, ACCESSING, AND OBTAINING AND THEN TWO OF THEM ARE NOUNS, JUST MEDICAL INFORMATICS AND INFORMATION TECHNOLOGY. >> I OBJECTED AT THE TIME ON PARALLEL CONSTRUCTION PERSON MYSELF. [ LAUGHS ] >> AND ALSO I WOULD ADD WORDS ARE IMPORTANT KIND OF PERSON. SO, THE NEXT VERSION OF THE PLAN WHICH COVERED FROM 2000-2005, CHANGED IT TO ALL VERBS. SO NOW IT WAS ORGANIZE AND PROVIDE ACCESS -- THESE ARE DIRECTIVE KINDS OF VERBS. THEY ARE COMMAND-LIKE VERBS. ORGANIZE AND PROVIDE ACCESS, PROMOTE USE OF HEALTH INFORMATION BY THE HEALTH PROFESSIONALS AND PUBLIC. STRENGTHEN IN FOREMALTICS INFRASTRUCTURE AND CONDUCT AND SUPPORT INFORMATICS RESEARCH. SO THAT HAD TOPICS -- I BETTER PLUG IN MY POWER SUPPLY OR MY LAPTOP WILL REFUSE TO RUN. SO THAT CATEGORIZATION WHICH LED TO PLANNING GROUPS THAT WERE WORKING UNDER EACH OF THOSE LABELS, ACTUALLY DROPPED OUT INFORMATION TECHNOLOGY FOR HEALTH PROFESSIONS EDUCATION, WHICH SEEMS A LITTLE DATED AND THEN THE MOST NOTABLE TRANSITION FROM 2000 STICKS, THE PLAN WORKING UNDER NOW IS THAT FIRST OF ALL THE TITLE ALL GOT SUBSTANTIALLY WORDIER SO I'M GOING TO ADD ANOTHER COLUMN. MORE WORDS. SO SIMPLE THINGS LIKE BUILDING THE LIBRARY'S COLLECTION BECAME FRANCE LATED INTO A SET OF NOUNS REPRESENTING INTENDED OUTCOMES. SO THE INTENDED OUTCOME WAS SEAMLESS UNINTERRUPTED ACCESS TO EXPANDING COLLECTION OF BIOMEDICAL DATA AND THEN AN OUTCOME WAS TRUSTED INFORMATION SERVICES THAT PROMOTE HEALTH LIS RATE, REDUCE HEALTH DISPARITIES, IMPROVE OUTCOMES. AND THEN INTEGRATED INFORMATION SYSTEMS PARTICULARLY OF THE TYPES OF BIOMEDICAL CLINICAL AND PUBLIC HEALTH THAT DO THINGS SUCH AS PROMOTE SCIENTIFIC DISCOVERY AND SPEED THE TRANSLATION OF RESEARCH IN PRACTICE. AND THEN AN OUTCOME OF STRONG AND DIVERSE WORKFORCE FOR BIOMEDICAL INFORMATICS RESEARCH AND THEN THIS IS AMBIGUOUS SENTENCE BECAUSE WHEN THEY TALK ABOUT SYSTEMS DEVELOPMENT IT'S NOT ONLY IN THE CONTEXT OF HAVING A WORK 4'S TO DO THAT, IT'S ACTUALLY TALKING ABOUT INTEGRATIVE SERVICE DELIVERY MODELS AND SO I THINK ONE OF THE THINGS THAT WE AS A BOARD SHOULD DECIDE IS WHETHER THIS 85 VIEW OF THINGS THAT WERE PROCESSES LIKE BUILDING, LOCATING AND OBTAINING OR ORGANIZING OR PROMOTING OR CONDUCTING, SHOULD BE USED AS OUR MODEL OF CATEGORIZATION OR WHETHER WE SHOULD DO AS THEY DID IN THE MOST RECENT LONG-RANGE PLAN AND THAT IS, VISION A SET OF DESIRABLE OUTCOMES AS A SEPARATE EXERCISE N2006, THEY HAD A BIG ONE-DAY PLANNING EXERCISE THAT RESULTED IN SECTION TWO OF THE REPORT WHICH IS 5 PAGES WORTH READING FOR SURE. BECAUSE THAT IS WHERE THEY TRIED TO IMAGINE WHAT THE WORLD WOULD LOOK LIKE IN 2025. AND I HAVE TO SAY FROM MY PERSPECTIVE, IT'S PRETTY SCARY HOW CLOSE THEY CAME TO EXACTLY WHAT YOU IMAGINE A GROUP OF PEOPLE WOULD DO IN 2016 TRYING TO MANUAL IN 2025. WE WON'T GO INTO DETAILS ABOUT THAT BUT I THINK IT DOES OFFER US MODELS AS THE REGENTS FOR HOW WE SHOULD CONCEPTUALLY STRUCTURE THE PLANNING PROCESS. AND SO I THINK I SHOULD PROBABLY STOP THERE TO SORT OF ASK PEOPLE'S REACTION TO, SHOULD IT BEGIN WITH A VISION OF INTENDED OUTCOMES? NOT KNOWING WHETHER WE ARE GUESSING CORRECTLY ABOUT 10 YEARS FROM NOW OR SHALL WE TAKE THE VERB APPROACH OF ACTIVITIES THAT WILL LEAD TO THE FUTURE, WHATEVER THAT FUTURE MIGHT BE? I'LL STOP THERE. >> WHEN ONE DOES THIS STRATEGIC PLAN, USUALLY YOU OFTEN START TO WITH A VISION WHICH IS THE SET OF STATES THAT YOU SEE THE WORLD IN AND THEN YOUR STRATEGIES OR TACTICS ARE THE VERBS, WHAT YOU MIGHT -- WE COULD HAVE BOTH. AND THAT'S A WAY TO THINK ABOUT IT. >> AND I'LL TELL YOU THAT THE 2006 PLAN HAD MAJOR TOPIC HEADINGS, INTENDED OUTCOMES AND THEN ALL THE SUB HEADINGS WERE ALL VERB IN HOW TO GET THERE. DO BOTH. THEY ARE NOT EXCLUSIVE. >> STRATEGIES HAVE TO BE IN SERVE. AND I WANTED TO MAKE A FEW FRAMING COMMENTS. THIS CAME OUT OF BRAINSTORMING SESSIONS. -- [ LOW AUDIO ] ONE OF THE QUESTIONS WE WANT TO ADDRESS IS WHO THE INTENDED AUDIENCE IS. OBVIOUSLY NIH IS ONE. AS A BOARD WE ARE SUPPOSED TO BE REPORTING TO THE SECRETARY. SO THAT IS ANOTHER BROADER AUDIENCE AND CERTAINLY WE WANT TO CONSIDER THE OTHERIPSITUTES THAT NLM IS PROUD OF BUT WE BOTH USED THE TERM LEARNING HEALTH SYSTEM IN OUR REMARKS YESTERDAY AND THAT WAS DELIBERATE BECAUSE THERE IS A BROADER WORLD OF TRANSLATION AND DELIVERY OF CARE AND TRANSITION TO CARE AND THE ENVIRONMENT. THAT IS CAUSING A LOT OF TRANSFORMATIONS. WE HAVE A LOT OF DISRUPTIONS, PRECISION MEDICINE, AND A LOT OF OTHER SPHERES. WE HAVE THE DEVICES AND HOME CENTERS AND THE TEE MOCKIZATION OF HEALTH DATA. WE HAVE PAYMENT REFORMS AND RETHINKING OF THE ORGANIZATIONAL MODELS AND ALL OF THESE ARE DISRUPTING SILOS AND REQUIRING NEW WAYS OF RECONFIGURING TO BE MORE ARTICULATED THAT WILL DELIVER NEW KNOWLEDGE, DELIVER IT AT THE POINT OF CARE AND LEARN FROM IT AND CONTINUALLY IMPROVE. IT'S A GREAT NAME AND A LOT OF IT IS WAY BEYOND WHAT NLM COVERS BUT WHETHER YOU THINK ABOUT WHERE AN INSTITUTE OR ENTITY MIGHT BE THAT COULD BE AT THE CENTER OF HOW ALL OF THESE PIECES FIT TOGETHER, THERE AREN'T A LOT OF CANDIDATES. SO WE JUST PUT OUT THERE THAT OUR AUDIENCE MIGHT BE LARGER AND WE MIGHT WANT TO THINK CAREFUL BEWHAT AUDIENCE WE ARE PITCHING THIS TOO. >> CAN I MAKE A COMMENT? PLEASE DO. >> I FOUND THIS VERY INTERESTING. HI TO SNAP A PICTURE OF THE SLIDES TO KEEP IT IN MY LAPTOP. I FIND THAT THE TRANSITION OF THE THEMES VERY INTERESTING OVER TIME IN 1985 AND EIGHTY SIX, NO NOTION OF WHAT THE WEB WOULD BECOME FOR EXAMPLE AND HOW THE AVERAGE CONSUMER WOULD ACCESS HEALTH INFORMATION BEYOND PUBMED. I THINK BACK IN THOSE DAYS. SO THINGS HAVE CHANGED DRAMATICALLY. THE REASON I LIKE VISION FIRST AND THE NOWS OF VISION ALONG WITH THE FISHES IN GO TIME PERIOD SUPPORT THE VISION IS THAT WHEN YOU THINK ABOUT HOW THE FORDANCE OF THE REST OF THE WORLD AND ACCESS AND INFORMATION SOURCES CHANGE WHAT IT IS THAT THE NLM DOES TO COMPLIMENT OR AMPLIFY OR REFINE THE OVERALL EXPERIENCE FOR PEOPLE, FOR EXAMPLE ON THE CONSUMER SIDE. I ALSO THOUGHT THAT YOUR COMMENTS WERE INTERESTING ABOUT TRANSLATION AND I GUESS I WOULD THINK OF IT AS A JOB OF NLM, MUCH BIGGER CHALLENGE PROBLEM BUT I CAN SEE COMING UP ON THE NLM SUPPLYING OR BEING ON POINT FOR PROVIDING THE BEST INFORMATION IN SUPPORT OF TRAPSALATION. THOSE TWO COMMENTS. >> BY THE WAY, HAS NANCY JOINED US ON THE PHONE? THANK YOU. ALSO I THINK WHEN WE TALK ABOUT AUDIENCE, ONE OF THE OTHER FACTORS HERE IS WHERE DOES THE SUPPORT BASE FOR NLM GOING FORWARD AND THE FUTURE COME FROM? WE SHOULD BE THINKING ABOUT THAT. PARTLY IN TERMS OF WHAT OUR SCOPE IS AND WHAT WE ARE TRYING TO DO AND HOW IS IT GOING TO GET PAID FOR AND IF WE ONLY LOOK AT NIH, AND SPECIFIC PROPAISES AND THINGS, THAT IS A LIMITED FIXED MAYBE HOPEFULLY CONTINUUM SOURCE BUT WE ALREADY KNOW HOW CONSTRAINING THAT IS IN TERMS OF BOTH INTERNAL OPERATIONS AND ALSO THE EXTRAMURAL PROGRAM AND IF WE TRY TO ACHIEVE THIS BROAD VISION WE HAVE TO THINK ABOUT WHO ARE THE STAKEHOLDERS THAT CARE ABOUT THIS AND WHO WILL BE ABLE TO HELP? I THINK THIS IS AN IMPORTANT POINT WHERE THE BOARD AND THE OUTREACH CAN COME IN BECAUSE YOU HAVE VARIOUS CONNECTIONS BEYOND THE LIBRARY AND THE INFORMATICS FIELD A LOT OF OTHER ORGANIZATIONS YOU REPRESENT TO MAKE A CASE AND I WAS MAKING AN ANALOGY TO THE PMI DISCUSSION BECAUSE I THINK WHAT ERIC IS TRYING TO DO IN TERMS OF GETTING BROAD SUPPORT TRYING TO TAKE EVERY DAY PEOPLE AND TRANSLATE THE ADVANCES OF PMI INTO CARE. AND I THINK THAT IS ALSO WHAT NLM NEEDS TO FURTHER. SO WE CAN MAYBE LEARN A LOT FROM THAT PERSPECTIVE. SO I JUST WANT TO MAKE SURE THAT PEOPLE THINK ABOUT THE SCOPE AND THE AUDIENCE AND HOW WE CAN BUILD A STRONG SUPPORT BASE. >> SO IN THE AUDIENCE, WE HAVE A VERY POWERFUL EXISTENCE FROM THE 85-86 PLAN AT THE HIGHEST PRIORITY RECOMMENDATION WAS THE CREATION OF NEW SERVICES IN MOLECULAR BIOLOGY AND GENETICS. THE HUMAN GENOME PROJECT IN THE EARLY CORN SEPTEMBERIZATION STAGES AND THAT PROPOSAL, THAT THE NLM COULD BE AN ENGINE FOR UNDERSTANDING THE BLUEPRINT OF THE HUMAN BEING CAUGHT THE IMAGINATION OF THE CONGRESS AS A SUPPLEMENT TO THE TRADITIONAL FUNDING AND I THINK IF WE WOULD BE SO LUCKY AS TO HAVE OR IDENTIFY A SIMILAR NOVEL OPPORTUNITY BECAUSE THE TIME IS RIGHT FOR SOMETHING. FILL IT IN. THAT WE SHOULD BE ANTICIPATING IN OUR PLANNING THAT WRITING IS IN A WAY THE AUDIENCE IS THE CONGRESS AS WELL AS ALL THE OTHER YOU ENUMERATED WOULD BE A VERY USEFUL DEVICE. >> AND PIGGYBACKING ON WHAT IS COMING THROUGH THE LEGISLATIVE PIPELINE ALSO, IF WE COULD HAVE THROUGH OUR CONSTITUENCY FOR EXAMPLE, A GROUP ON CAPITOL HILL AND OTHER ENTITIES TO FIGURE OUT WHERE THERE ARE OPPORTUNITIES THAT WE CAN -- SO THAT IS ALSO IMPORTANT. SO WHAT WE MIGHT WANT TO DO IS OPEN UP TO PEOPLE'S THOUGHTS ABOUT THIS. WE WERE GOING TO TALK ABOUT HAVING A BLACK BOARD. I WOULD LIKE TO HAVE SOME -- CAN YOU PROJECT -- >> I CAN TAKE NOTES UP THERE. >> LIKE PROJECT YOUR WORD DOCUMENT. >> I THINK PROJECTING ON THE SCREEN IS THE MOST -- WE NEED TO PUT UP STICKY PAPERS AROUND THAT, WE CAN DO THAT. >> SINCE THIS IS OPEN MEETING, IT WILL BE HARD FOR THAT PROCESS TO BE SEEN BY EVERYBODY IF WE DON'T JUST USE ALL THE PROJECTORS. >> MIKE DO YOU WANT TO COMMENT ABOUT NLM SUPPORT ROLE? >> SURE. SO MY OFFICE, OFFICE OF HEALTH INFORMATION PROGRAMS DEVELOPMENT, THE STAFF BY MYSELF AND BARBARA ON THIS PROJECT. WE HAVE OTHER STAFF THAT ARE AVAILABLE DANA WE BROUGHT IN AND WE HAVE REACH AND ANALYSIS CAPABILITIES. WE ARE ORGANIZING MEETINGS AND TAKING NOTES AND CHIMING IN WHEN WE THINK WE HAVE SOMETHING TO OFFER. BUT I THINK WE HAVE A GOOD CAPABILITY AND WE HAVE OTHER PEOPLE AT NLM IN OTHER PARTS OF NLM WHO ARE VERY INTERESTED IN THIS PROCESS. >> WE HAVE TO ORGANIZE CALLS AND ORGANIZE FACE-TO-FACE SESSIONS AND REPORTS AND SO IT IS VERY IMPORTANT WE GET THE INITIAL MOVING RIGHTS SO WE CAN FIGURE OUT HOW TO DO THAT AND ENGAGE THE OTHER STAKEHOLDERS. >> SO IN JUMPING OFF FROM THE PMI INITIATIVE WE HEARD ABOUT AND SPEAKING TO YOUR POINT ABOUT ENGAGING CONGRESS, WHICH I THINK IS REALLY IMPORTANT, AND IN THE COURSE OF THAT, IN ORDER TO ENGAGE CONGRESS, INSPIRE THE GENERAL POPULATION EVERYBODY IS USING THESE DEVICES THE BIG CHALLENGE IS MERGING MASSIVE DIFFERENT DATA STREAMS AND INCORPORATING IN ADDITION, THE ENVIRONMENT. SO, IF WE ARE TALKING ABOUT MOVING FROM HOSPITAL BASED, CLINIC-BASED MEDICINE TO PREVENTIVE HEALTH, AND THAT SPEAKS TO MATTIE WHAT YOU HAVE BEEN DOING, SO THE HOME BECOMES, THE HOME AND THE PERSON BECOMES THE PLACE AND THE FOCUS OF HEALTH AS OPPOSED TO DISEASE. AND THAT WOULD BE MY BROAD OVERARCHING -- I'M BIAS BECAUSE THAT IS WHAT I DO. BUT I THINK THAT IS WHERE MADISON IS MOVING. >> WE DID THINK ABOUT WHETHER TO KIND OF DIVIDE THE THEMES INTO PUBLIC HEALTH AND PERFORM CARE AND THE UNDERLYING SIZE OF GENOMICS AND SO ON. AND SO THAT MIGHT BE A POSSIBILITY. I'M NOT SURE WHETHER THAT CAPTURES IT OR NOT. TRYING TO FIGURE OUT WHERE THAT -- >> I THINK WHAT YOU'RE TALKING ABOUT IS THE SCALE. SO MOLECULAR SCALE TO HUMAN SCALE TO POPULATION SCALE. BUT IT'S ALL THE SAME METHODOLOGIES WHICH UNDERLIE EACH ONE WHICH IS HOW YOU MERGE THESE MASSIVE DATA STREAMS. >> BUT WHAT IT ALSO LOSES IS THE INTEGRATION OF ACROSS FROM MOLECULAR TO POPULATION. >> I THINK THERE SHOULD BE A WAY TO DO IT. >> WHAT I THINK YOU'RE DESCRIBING AND I HATE USING THIS TERM BECAUSE IT JUST DOESN'T SOUND SOPHISTICATED ENOUGH BUT YOU ALL ARE VERY FAMILIAR WITH IT. WHAT WE ARE TALKING ABOUT IS LEVERAGING BIG DATA AND USING A PROCESS APPLYING ALGORITHM OR EVOLVING ALGORYTHMS THAT ALLOW US TO USE ALL THE DAYA THAT IS AVAILABLE AND PERHAPS BAYESIAN TECHNIQUES AND SO FORTH TO INTEGRATE THAT SO THAT WE HAVE OUTCOMES THAT WE COULD NOT EVEN PREDICT BUT THE MATHEMATICAL MODEL WILL LEAD US TO THOSE OUTCOMES. SO, TO SOME EXTENT IF YOU LOOK AT POPULATION DATA OR DEMOGRAPHICS OR GENOMIC, AND PUT THOSE IN BOXES, YOU ACTUALLY ISOLATE YOURSELF AS OPPOSED TO PUTTING IT INTO A STRUCTURE THAT ALLOWS BORROWING AND SYNERGIES TO BECOME APPARENT. >> I SEE A COUPLE OF REALLY IMPORTANT CURRENTS THAT ARE GOING ON THAT ARE PROFOUNDLY IMPORTANT. THE FIRST IS THE DEMOGRAPHIC SHIFT IN THE COUNTRY AND I THINK THE NATIONAL LIBRARY OF MEDICINE HAS A REALLY IMPORTANT ROLE TO PLAY BECAUSE WE HAVE POPULATIONS THAT ARE NOT GOOD HEALTH CARE CONSUMERS AND THERE IS NOT A SUSTAINED AND REALLY CONCENTRATED EFFORT -- HERE YOU HAVE HEALTH INSURANCE SO GETTING HEALTH INFORMATION OUT TO WHAT IS GOING TO BE THE MAJORITY IN THE SOCIETIES INCREDIBLE I IMPORTANT. WHEN I WAS READING THE MINUTES FROM THE NATIONAL MINORITY DISPARITIES, THEY REPRESENTED 40% OF THE POPULATION, WHICH IS PRETTY CLOSE TO WHERE WE ARE BY THE TIME WE GET TO 2030, WE ARE ALMOST 50% OF THE POPULATION THAT HAS ENORMOUS HEALTH ISSUES THAT HAS TO BE DEALT WITH. THERE IS THAT CURRENTLY GOING ON. I THINK WHAT WE ARE ALSO COMING TO AND WHAT I WOULD DESCRIBE IS THE CONSERVATION ABOUT SUSTAINABILITY. IT'S COMING TO US FROM THE ISSUES RELATED TO CLIMATE CHANGE BUT REALLY WHAT WE ARE GRAPPLING WITH IS HOW TO CONTROL HEALTH OUTCOMES. PREDICTIVE MODELING YOU'RE TALKING ABOUT IS REALLY BEING DRIVEN TO A CONVERSATION IN WHICH WE ARE NOW STEPPING UP TO SAY THAT WE WANT TO CONTROL HEALTH OUTCOMES IN OUR COMMUNITIES AND WE HAVE TO GET INFORMATION INTO THE COMMUNITIES AND GET INFORMATION BACK. WE HAVE TO CREATE AN INTERACTIVE RELATIONSHIP SO THAT WE CAN DRIVE AND CONTROL THE HEALTH OUTCOMES THAT WE WANT. THE HUGE PROBLEM IS THE INFORMATION, HEALTH INFORMATION SYSTEM, IS IT BUILT TO DO THAT? WE HAVE GOT A LOT OF BARRIERS IN THE WAY. WE HEARD ABOUT PMI. I WAS LISTENING TO THEM AND I THOUGHT WE HAVE ALL THAT DATA. AUTO ALL OUT HERE WE JUST HAVE BARRIERS RIGHT NOW TO WEIGHS IT. SO I THINK THE NATIONAL LIBRARY OF MEDICINE CAN PLAY ENORMOUS ROLE IN TRYING TO FIGURE OUT HOW TO MOVE HEALTH INFORMATION IN THE SAME WAY THAT WE MOVE FINANCIAL INFORMATION ACROSS OUR HEALTH SYSTEM SO THAT AT THE POINT OF CARE, THE PATIENT AND PROVIDER HAVE THE INFORMATION THEY NEED. I THINK THOSE TWO CURRENTS ARE REALLY THE HUGE CHALLENGES. >> I'M FROM THE LIBRARY OF CONGRESS. SO I'M ANOTHER NATIONAL LIBRARY AND CHRIS IS ALSO FROM ANOTHER NATIONAL LIBRARY SO I'D LIKE TO JUST THROW OUT A DIFFERENT PERSPECTIVE FROM A LIBRARY PERSPECTIVE THAT YOU THINK ABOUT WHEN YOU THINK ABOUT CREATING THIS NATIONAL INFORMATION INFRASTRUCTURE. WE ARE ABOUT TO ALSO HAVE LIBRARY OF CONGRESS, VERY EXCITING TIME SO I'M HOPING THAT THESE NEW NATIONAL LIBRARY LE GET-TOGETHER AND START THINKING ABOUT YOUR VERY DIFFERENT DISCIPLINES BUT YOU HAVE SHARED AND COMMON INTERESTS. SO THE OTHER THING I WOULD SAY IS YOUR PHYSICAL SPACE IS VERY IMPORTANT. SO YOU DEFINITELY -- I KNOW A LOT OF THIS IS VIRTUAL AND NATIONAL AND INTERNATIONAL, ALL OVER THE PLACE. BUT PHYSICAL SPACE IS IMPORTANT AND IT CAN BE USED REALLY TO ADVANCE A LOT OF THE MISSIONS AS WELL. >> SO JUST TO EMPHASIZE THE LIBRARY POINT. SO SINCE THIS IS A SIGNIFICANT PART OF THE ORGANIZATION AND STRATEGIC ELEMENTS IN THE PAST WAS SHARED ELECTIONS, THINKING IN THE FUTURE ABOUT WHAT INFLECTION IS. IS IT REALLY EVOLVING CONCEPT? WE ARE ANYWHERE FROM THE BROAD DATA WHICH COULD BE IN OUR PURVIEW OR NOT OR HOW IT IS CATALOGS OR ORGANIZED. WHAT KINDS OF TOOLS AND RESOURCES ARE PART OF POTENTIALLY COLLECTIONS. >> AND NLM HAS DONE A VERY GOOD JOB OF MANAGING THE PRINT AND THE DIGITAL WORLD. THE PRINT AND THE DATA WORLD. MY ANALOGY AS A LIBRARIAN, I FEEL LIKE I'M THE SLAPSTICK COMEDY WITH ONE FOOT ON THE PIER AND ONE FOOT ON THE BOAT. THAT'S THE OLD STUFF WE USED TO DO AND THE THING IS JUST BECAUSE IT'S OLD, SOME OF THE THINGS AND SERVICES WE HAVE STILL ARE RELEVANT. STILL HAVE A USER BASE. SO ONE OF THE ISSUES IS THERE IS RESEARCH IN THE LAST THREE YEARS UP TO OUR THIRD ITERATION OF IT, FOUR YEARS, HOW DO THE FEDERAL LIBRARIES INTERACT? AND THINGS THAT ARE CLEAR IS WE ALL HAVE MINDED OUR NITTING. WE COLLECT IN OUR SUBJECT AREA AND THERE IS VERY LITTLE OVERLAP. >> AND WE HAVE A -- >> INCREDIBLE OVERLAP. >> THIS WAS NOT BY ACCIDENT. >> NOT BY ACCIDENT. BUT WE DID A VERY GOOD JOB BUT IT HAS IMPLICATIONS IF ANY OF US CHANGE. >> I THINK ONE OF THE IMPORTANT CHANGES IN LIBRARIES, INCLUDING NLM, IS THAT LIBRARIES ARE NO LONGER JUST ABOUT COLLECTIONS. THEY ARE SERVICES. THEY AREFRAIN INSTRUCT, THEY ARE MOVING FROM BEING A SUPPORT SERVICE TO BEING PARTNERS AND PART OF THE RESEARCH AND EDUCATION THAT IS GOING ON WITH LIBRARIANS AS PARTICIPANTS WITH A PARTICULAR SKILL SET. I THINK THE OTHER THING THAT LIBRARIES HAVE EXCELLED AT OVER AGES LITERALLY AGES, IS TRANSLATION. WE TALK ABOUT TRANSLATIONAL MEDICINE AND YET LIBRARIES HAVE BEEN TRANSLATING COMPLEX SCIENTIFIC AND HEALTH RELATED CONCEPTS INTO THINGS THAT THE LAYPERSON CAN UNDERSTAND FOR CENTURIES JUST TAKING THINGS AND GUIDING PEOPLE TO APPROPRIATE READING LEVEL MATERIALS THAT HELP THEM TO UNDERSTAND NOT JUST I NEED TO EAT MORE VEGETABLES BUT WHY ALL THAT IS IMPORTANT. WHAT IS THE SCIENCE BEHIND IT AND I THINK IT'S A ROLE THAT NLM CAN CONTINUE TO PLAY. >> SO PART OF THAT TRANSLATION IS THE CATALOG. METATAX OR WHATEVER. >> SO TALKING ABOUT BUILDING A NATIONAL INFORMATION INFRASTRUCTURE AND AND THAT WAS GOING TO BE INCREDIBLY NECESSARY FOR THE PRECISION MEDICINE INITIATIVE AND AS PART OF THAT, THE ROLE OF INDUSTRY WAS BROUGHT UP ONE OF THE THINGS THAT WAS MISSING FROM THE 2006, 2016 PLAN WAS PUBLIC/PRIVATE PARTNERSHIPS. AND SO SHOULD WE ALSO BE THINKING ABOUT NLM'S ROLE WITH THE REST OF THE WORLD OUT THERE AND WHAT WE DO VERSUS WHAT THEY DO? I MEAN, THE DATA IS ALL THERE BUT THE MECHANISM, I'M NOT QUITE SURE THE RIGHT WORD TO BRINGING IT ALL TOGETHER AND INTEGRATE IT, WE HAVEN'T GOT YET. THERE ARE THE BEGINNINGS OF THAT AND I'M THINKING OF WATSON. THERE ARE THE BEGINNINGS OF THOSE SYSTEMS OUT THERE COMMERCIALLY OFFSHORE. THERE ARE BEGINNINGS OF THOSE THINGS IN ACADEMIA AS WELL BUT IS THAT WHAT WE INVENT? OR IS THAT WHAT WE FOCUS ON? OR WE KEPT DO EVERYTHING. SO I GUESS MY QUESTION IS, WHAT RELATIONSHIPS DO WE BUILD WITH OTHER PARTS OF THE WORLD, THE INFORMATION WORLD TO GET TO WHERE WE WANT? >> SO THERE ARE PRECEDENTS WITH DOD AND MAYBE THE DOD GUYS CAN COMMENT ON THIS. DOD. SO THE DOD HAS ESTABLISHED NOW 7MIIs, MANUFACTURING INNOVATION INSTITUTES, WHERE THEY HAVE WORKED OUT IN REAL DETAIL HOW YOU PARTNER WITH INDUSTRY AND MAKE ENORMOUS TEAMS TO GET A PRODUCT THAT THEY NEED TO USE ON WAR FIGHTERS. SOY, I DON'T KNOW IF YOU GATE WANT TO THE COMMENT ON THOSE BUT THAT'S AN EXAMPLE OF HOW THAT CAN BE DONE AND YOU DON'T HAVE TO REINVENT THE WHEEL. >> YOU DO HAVE TO STAY OUT OF JAIL. >> THE DMI DID USE IN ITS INITIAL AWARDS TO RECEIVE OTHER TRAPS ACTION MATERIALS WITH RESPECT TO THOSE ACQUISITION STRATEGIES. >> I DON'T KNOW WHETHER THIS HAS COME UP ALREADY BUT WE ARE PLANNING TO DISTRIBUTE TO ALL OF YOU AND ANYWHERE WHO IS INVOLVED IN OUR PLANNING AN ABSOLUTEY UPDATED VERSION OF THE SUMMARIES OF CURRENT ACTIVITIES AT NLM THAT WERE DELIVERED TO THE ACD WORKING GROUP AND MENTION THIS IN CONTEXT BECAUSE I THINK THIS WILL GIVE YOU BETTER FEEL FOR THE DEGREE OF PARTNERSHIPS WE HAVE ALREADY ALTHOUGH NONE THAT SPECIFICALLY RELATE TO THIS DOD EXAMPLE. BUT THERE ARE MANY. >> SO BOB, IF I COULD ACTUALLY -- I'M REMINDED BY BETSY THERE IS ONE MORE COLUMN WE PROBABLY OUGHT TO LOOK AT AS WE BRAINSTORM AND THAT IS THE MOST RECENT GUIDANCE ABOUT NLM WAS THE WORKING GROUP THAT WAS DELIVERED ITS REPORT TO THE NIH DIRECTOR IN 2015. AND I SHOW YOU THAT AS AN ADDED COLUMN BECAUSE IT BLOWS UP THE WHOLE TABLE AS WE ADD MORE AND MORE WORDS BUT THEY REALLY MADE 6 RECOMMENDATIONS BUT I THINK CLEARLY WE WOULD IGNORE THOSE RECOMMENDATIONS AT OUR PERIL AS WE DO STRATEGIC PLANNING. SO IF I COULD HAVE JUST A MINUTE TO ENUMERATE THOSE BECAUSE I THINK IT MIGHT UPREGULATE SOME CREATIVE JUICES AS WELL. SO MOST OF THESE ARE HIGH LEVEL MOTHER HOOD AND APPLE PIE KINDS OF THINGS BUT A FEW ARE INTERPRETED AS BEING A LITTLE SHARP EDGE. SO THE FIRST IS THE NLM MUST CONTINUALLY EVOLVE SO THERE IS A VERB FOR YOU. AND TRYING TO REMAIN A WORLD LEADER IN AN ACCESSIBLE AUTHORITATIVE RESEARCH FINDING AND TRUSTED HEALTH INFORMATION. SECOND THING WAS NLM SHOULD LEAD -- THERE IS AN IMPORTANT VERB, TO LEAD EFFORTS TO SUPPORT AND CATALYZE OPEN SCIENCE. SO THEY GAVE A DIRECT CHANNEL FOR NLM TO BE AS IT HAS BEEN, THE LEADERS OBVIOUSLY PUBMED CENTRAL AND THE IMPLEMENTATION OF EXECUTIVE ORDERED IN 2014 NUMBER THREE IS THE INTELLECTUAL AND EP CENTER FOR DATA SCIENCE. SO THAT WAS AWARDING TO THE NLMBD2K AND DATA SCIENCE ACTIVITIES THAT WERE ALREADY UNDERWAY. NUMBER 4 WAS TO STRENGTHEN THE ROLE IN FOSTERING FUTURE GENERATIONS OF PROFESSIONALS IN ALL OF THESE THINGS. INFORMATICS, LIBRARY SCIENCE, THROUGH TRAINING EFFORTS. SO BASICALLY ENDORSING NLM'S MISSION OF TRAINING. THAT IT SHOULD MAINTAIN, PRESERVE AND MAKE ACCESSIBLE THE NATION'S HISTORICAL EFFORTS. I THOUGHT THIS WAS INTERESTING. IT'S NOT ACTUALLY HISTORICAL EFFORTS, IT'S THE OUTPUT OF THE EFFORTS AS REPRESENTED IN THE LITERATURE AND DATABASES AND SUCH. ENDORSING ITS ROLE AS THE PRINCIPLE AND INTERNATIONAL ARCHIVE FOR THE OUTPUT OF THE SCIENTIFIC ENTERPRISE THAT HAS BEEN PARTICULARLY SUPPORTED BY NIH AND THEN THIS WAS FOR PATTY. NEW NLM LEADERSHIP, THEY COULD HAVE JUST PUT IN YOUR NAME, SHOULD EVALUATE WHAT RESOURCES AND STRUCTURES ARE REQUIRED. SO THAT WAS REALLY THE ONLY KIND OF TACTICAL, DO THIS. YOU GOT TO DO THIS. AND YOU'RE DOING THE FUNCTIONAL AUDIT THAT IS RESPONSIVE TO THAT. >> MAY I MAKE A QUICK COMMENT? THE NIH STRATEGIC PLAN HAS FOUR STATEMENTS IN IT. NOT SURE IF YOU COULD ARGUE THEY ARE GOALS OR TARGETS. THE LAST THOS DO WITH EFFICIENCY AND IT'S CLEARLY COMMUNICATED TO ALL OF US THAT WE SHOULD HAVE IN OUR VISIONS EFFICIENT USE OF THE COUNTRY'S RESOURCES MADE WITHIN OUR PURVIEW. THERE WILL ALWAYS BE THAT SENSE OF SOME WAY TO ENTER GREAT WITH THE NIH AROUND MAKING SURE WE ARE DEPLOYING RESOURCES PROPERLY. >> I'LL PUT MY EXCEPT TO THAT AND THE BIAS I WEAR ON MY SLEEVE IS TO NOT MICROMANAGE IN STRATEGIC REPORTS AND BASICALLY PORTRAY A DESIRABLE STATE AND LET THE SMART PEOPLE WHO WORK THERE FIGURE OUT HOW TO ACHIEVE THAT STATE. BUT I THINK WE'LL HAVE TO STRIKE A BALANCE RESPONSE TESTIFY THIS DIRECTION. >> I THINK -- ABSOLUTELY. I DON'T WANT IT TO BE A WORK WHIP. >> SO APROPOS. >> THANK YOU. >> SO ONE THING TO BE MINDFUL OF. THE NIH AND ACD REPORT -- AC/DC? [ LAUGHS ] >> I'M GOING TO WRITE THAT DOWN. >> THE ACD REPORT ARE REALLY SCIENCE FOCUSED AND THAT IS THE MISSION OF NIH. AND IN FACT, THE NEW NIH STRATEGIC PLAN REALLY IN FACT PULLED BACK MORE THAN IN THE PAST FROM APPLICATIONS OR QUALITY MEASUREMENT FROM OTHER ASPECTS OF HEALTH CARE DELIVERY. SO ONE OF THE THINGS THAT WE NEED TO BE SURE OF, EVEN THOUGH WE HAVE TO OBVIOUSLY BE MINDFUL OF THIS IS WHETHER THAT SHOULD LIMIT OUR SCOPE ON WHETHER WE REALLY WANT TO TAKE ON THE WHOLE TRANSLATIONAL AND HEALTH DELIVERY ASPECTS SO JUST BE SURE THAT WE DON'T KIND OF BE TOO INFLUENCED BY THOSE. >> AND I DO THINK THAT THE, ONE OF THE THINGS YOU CAN WELL IMAGINE THAT THERE WERE A NUMBER OF US READING THE WORKING REPORT GROUP VERY CAREFULLY AND WERE VERY HAPPY TO SEE THE FIRST STATEMENT THAT DEALT WITH ACROSS THE SPECTRUM OF THE USER GROUPS THAT WE ARE ATTEMPTING TO SERVE AND IN LINE WITH THE ACTUAL MISSION AND THE PURPOSE FROM THE SLIDES. >> SO VERY APROPOS TO WHAT YOU HAVE JUST PRESENTED BUT ALSO SOME OF MY THINKING ABOUT WHAT THE DOCTOR HAS BEEN TRYING TO GET US TO FOCUS ON. IS AN OBSERVATION AND I'M POINTING 3 FINGERS BACK AT MYSELF. I'M A MEMBER OF THE BABYBOOMERS AND MY WIFE KEEPS TELLING ME, STOP SAYING BELIEVE IT OR NOT. BECAUSE PEOPLE BELIEVE YOUR STORY! [ LAUGHS ] I'M PART OF THE FIRST WAVE OF THAT BUT WE ALL FIND IT DIFFICULT TO UNDERSTAND THE MILLENNIAL MIND-SET AND FOCUS ON WHAT IS IMPORTANT IN INFORMATION SUCH THAT WE ORES EACH THOUGH WE TALK ABOUT NATIONAL LIBRARY OF MEDICINE, CONTINUING ITS PRECEDENT AND ITS FOCUS ON TRAINING, NATIONAL LIBRARY OF MEDICINE NEEDS TO BE TRAINED BY THESE NEXT GENERATIONS THAT ARE COMING ALONG I'M NOT QUITE CERTAIN I CAN COUNT MORE THAN 5 INDIVIDUALS IN THIS ROOM WHO MIGHT FIT WITHIN THE MILLENNIAL'S GENERATION PROBABLY LESS THAN THAT. >> AND THERE ARE MORE AMONG THE N LM STAFF. >> THAT IS IMPORTANT IN TERMS OF LOOKING AT WHO WE HAVE TO SERVE AND WHAT TYPE OF INFORMATION THEY ARE GOING TO DRAFT. IF I GO ON TO GOOGLE AND LOOK SOMETHING UP, OUTPUT FROM THE NATIONAL LIBRARY OF MEDICINE IS VERY DIFFICULT TO FIND IN THE FIRST PAGE OR TWO. BUT WHAT YOU DO FIND IS A LOT OF TRASH AND MISS INFORMATION THAT COMES FORWARD. IN ADDITION TO SERVING SCIENTIST, WE HAVE A RESPONSIBILITY TO SERVE THE CITIZENRY OF THE GLOBAL AND THEY ARE NOT GOING TO BE ABLE TOL ASK FOR IT TO BE PULLED TO THEM. IF MAY REQUIRE A WORK GROUP BE ASSEMBLED OF THE MILLENNIALS TO HELP US. YOGI BERRA TOLD US THAT YEARS AGO IN TERMS OF BEING ABLE TO PREDICT ESPECIALLY THE FUTURE. THAT MAY BE SOMETHING IN REGARD TO BEING CERTAIN WHAT WE CAN'T CONCEIVE OF OF THESE PLASTIC MINDS OF OUR CHILDREN AND GRANDCHILDREN NEED TO BE INVOLVED IN AND HELPING US SEE WHERE WE NEED TO GO. I THINK ALONG THOSE LINES WHAT DEFINES HEALTH INFORMATION THESE DAYS? SO AS WE GET TO THE MOBILE APPS AND LOOK AT ENVIRONMENTAL FACTORS ON HEALTH, THE BOUNDARIES OF HEALTH INFORMATION IS EVER GROWING SO THEREFORE THE ABILITY OF WADO WE DELIVER BECOMES A QUESTION. EVEN TO THE POINT OF WHAT PARTNERSHIPS DO YOU MAKE IN ORDER TO HAVE THE APPROPRIATE INFORMATION TO INTEGRATE TO GIVE YOU AN APPROPRIATE OUTCOME. SO DEFINING HEALTH INFORMATION SHOULD BE A CLEAR PART OF OUR STRATEGY OF GOING FORWARD BECAUSE THE NATIONAL LIBRARY SHOULD BE THAT NEXUS OF WHERE WE ARE WAT INFORMATION AND THEN YOU DECIDE WHAT YOU COLLECT, HOW YOU MANIPULATE INFORMATION AND HOW YOU DELIVER IT BECAUSE CONTEXT AND DELIVER IS VERY IMPORTANT TO WHO YOU ARE DELIVERING IT TO. >> [ INDISCERNIBLE ] IT SPEAKS TO THE EFFECTIVENESS OF ANY STRATEGIC -- USUALLY IT'S NOT WHAT CAN YOU DO, IT'S REALLY BEING INTENTIONAL ABOUT WHAT YOU CAN'T DO. IT'S THE HARDEST PART TO ESTABLISH THAT AND I THINK SOME OF THE PROGRAMS YOU OUTLINED HAVE -- REALLY HIGHLIGHTED HOW DOD IT WAS VERY CLEAR THAT THE NIH FANTASTIC BASIC SCIENCE IN DEVELOPMENT AND THIS IS AT THE WHEEL HOUSE AND PROBABLY HAS ADDITIONAL COMMENTS. R&D IS IDENTIFYING APPROPRIATE ANTIGENS. WHO PROSPECTIVE VACCINE AND COMPONENTS THAT WILL WORK IN ANIMAL AND HUMAN TRIALS COULD OCCUR. CERTAINLY WITHIN THE WHEEL HOUSE OF DOD AND NIH ET CETERA. WHEN YOU GET TO THE POINTED OF MANUFACTURING LARGE SCALES AND FIELDING VACCINES TO THE ENTIRE PUBLIC, IT'S IDENTIFIED EARLY ON THAT WAS PROBABLY NOT WITHIN THE SCOPE OF ONE MISSION OF THE DEPARTMENT OF DEFENSE AND TWO, THEIR PARTICULAR EXPERTISE. SO DEFINING THOSE BARRIERS THAT DON'T OVERLAP, IS WHY I LOVED YOUR COMMENT ABOUT PERHAPS COMPETING INTERESTS BETWEEN LIBRARY OF CONGRESS AND NLM, IDENTIFYING WHAT YOUR IDENTITY IS SO YOU'RE THAT FIRST CALL FOR WHATEVER IT IS YOU ELECT TO DO. I THINK IT'S A IMPORTANT PART OF A STRATEGIC PLAN AND CERTAINLY AN OPPORTUNITY HERE. AT WHAT THE POINT IN HEALTH INFORMATION DEVELOPMENT CYCLE DOES THE NATIONAL LIBRARY OF MEDICINE WANT TO PLAY A ROLE? IS IT EARLY PILOT STAGING PUTTING OUT GRANTS AS WE SEE LATER ON TO BEGAN THEY'RE INTEREST AND DEVELOP THOSE EARLY INNOVATIONS? IS IT THE RULE OF NLM TO REALLY PRODUCE FROM START TO FINISH THOSE PILOT PROJECTS OR IS IT MORE OF A CONSUMER ESTABLISHED PROJECT DONE IN OTHER ENTITIES AND AROUND OUR NATION? I THINK THERE IS OPPORTUNITY TO REALLY DEFINE THE ROLE OF NLM GOING FORWARD BECAUSE IT WAS STATED EARLIER, WE CAN'T DO IT ALL. >> SO THANK YOU FOR THOSE COMMENTS BASED ON MY COMMENTS. I'M GOING TO COMMENT BASED ON COLONEL CATALENA'S COMMENTS. SO, WITHOUT SOUNDING LIKE MOTHERHOOD AND APPLE PIE YOU SAY THE ISSUES YOU'RE HEARING IS WHAT IS HEALTH INFORMATION? AND I WOULD TAKE IT TO A LARGER QUESTION. WHAT IS HEALTH? AND IN AS MUCH AS HEALTH INFORMATION IS PART OF PUBLIC HEALTH SOCIOECONOMIC AND COMMUNITY ISSUES ARE AN ESSENTIAL PART OF PUBLIC HEALTH. AGING CHILDREN -- YOU CAN PUT ALL OF THAT INTO DIFFERENT QUESTIONS OF WHAT IS HEALTH. WHICH IS ACTUALLY A VERY DIFFERENT FOCUS THAN THE NATIONAL INSTITUTE'S OF HEALTH MOST OF WHICH ARE BASED ON A DISEASE OR BODY PART. AND SO IF WE KIND OF BREAKDOWN THOSE SILOS BY SAYING WHAT CAN THE N LM DO, WHAT DOES THE NATIONAL LIBRARY OF MEDICINE DO BEST TO HELP FURTHER HEALTH? THEN YOU CAN PROBABLY PUT ALL OF THOSE THINGS BIO INFORMATICS COMMUNITIES AND M HEALTH AND PROTEOMICS, METABOLOMICS, PHYSIOLOGY, BEHAVIOR, PUBLIC HEALTH, PUBLIC INFORMATION AND ANN OVER ARCHING KEEP OF WHAT IS HEALTH AND HOW CAN THE NATIONAL LIBRARY OF MEDICINE SPEARHEAD THAT FOR THE NIH WHICH GETS AWAY FROM THE SILOS OF DISEASE BUT INCLUDES DISEASE? >> SO ESTABLISHING BOUNDARIES OF WHAT THE NLM DOES WHETHER TO PROP GADE OR ENCOURAGE IT IS IMPORTANT OTHERWISE YOU GET LOST IN TRYING TO DO TOO MUCH. >> 10 YEARS AGO THE LIBRARY PAID FOR A BOOK BY NANCY TOMES CALLED THE GOSPEL OF GERMS. AND IT LOOKS AT THE EARLY 20TH CENTURY AND THE RADICAL IMPACT THAT THE NEW MOLECULAR BIOLOGY PLAYED IN TRANSFORMING MEDICINE MUCH IN THE SAME WAY PRECISION MEDICINE AND GENOMICS WILL TRANSFORM MEDICINE IN THE 21ST CENTURY. AND I THINK IT'S A CAUTIONARY TALE IN BUILDING STRATEGIC PLANS. PROVIDING TRUSTED INFORMATION IS FINE. TRYING TO GET IT APPROPRIATELY USED IS IMPOSSIBLE. AND IF THAT IS OUR GOAL, I THINK NANCY SHOWS US YOU'RE NOT GOING TO GET THERE. THE RECEPTOR SITE IS SO DIVERSE AND AS SHE LOOKED AT THAT INFORMATION ABOUT GERMS AND WHAT THIS MEANT IN CLEANING YOUR HOUSE, IT LED TO LISTERINE AS A DANDRUFF PREVENTIVE. LISTERINE AS A WOMAN'S HYGIENE APPLICATION. LISTERINE CIGARETTES FOR A PERIOD OF TIME TO IMPROVE YOUR BREATH. WHAT PEOPLE DO WITH TRUSTED INFORMATION IS SIMPLY BEYOND OUR CONTROL. AND I THINK AS BEE LOOK AT PUBLIC-PRIVATE PARTNERSHIPS, AT THE EDUCATION AND DISSEMINATION OF INFORMATION TO THE PUBLIC, WE NEED TO KEEP OUR HORIZONS AT A LEVEL WHERE WE CAN CONTROL THE OUTCOME AND TRUSTED INFORMATION IS A DEFINABLE PRODUCT APPROPRIATE USE OF THE INFORMATION, THAT'S BEYOND PRAYING FOR. >> ON THE OTHER HAND, DALE, THERE IS NO POINT IN NLM PROVIDED TRUSTED INFORMATION IF NO ONE ACTUALLY TRUSTS IT AND THEREFORE NO ONE ACTUALLY USES IT. >> YOU HAVE TO STRIKE A BALANCE. PEOPLE HAVE TO ACCEPT IT IS TRUSTED AND VALID. BUT I DON'T WANT US TO TRY TO GET IN THE PUBLIC EDUCATION BUSINESS. WE HAVE A DEPARTMENT OF EDUCATION THAT IS ALREADY NOT DOING THAT WELL. >> SO THIS REMINDS ME THAT DON LINDBERG HAS A TWO PAGE NLM RESPONSE TO THE CONTENT OF THE PLAN. ONE ITEM WHICH JUMPS OUT AT YOU AND HE TALKS ABOUT THE THREATS TO THE FUTURE SUCCESS OF THE LIBRARY AND THE FIRST ONE IS SPACE. THE CLOSE HARD TO BELIEVE HE WROTE 10 YEARS AGO IS THAT HE WRITES ABOUT WHAT A MAJOR THREAT TO THE LIBRARY'S SUCCESS IS AMERICA BECOMES SO DIVIDED THAT IT ERODES TRUST IN GOVERNMENT PROVIDED INFORMATION OF ANY KIND. AND HOW DO YOU DEAL WITH THAT? I THOUGHT, WELCOME TO 2016. >> AND I CAN TELL YOU THAT I REMEMBER I WAS SITTING IN THIS ROOM THE DAY THAT THAT CAME UP AND THE PERSON WHO FIRST ARTICULATED THAT AS A MAJOR THREAT AND DON REALLY RESONATE THAN THE NATIONAL LIBRARY OF MEDICINE. YOU CAN NOT -- MAYBE ANOTHER SECTOR. I JUST DON'T KNOW WHO THAT IS. AND I THINK THAT WILL ALLOW ALL KINDS OF INFORMATION TO FLOW, INCLUDING THE INFORMATION THAT THE LIBRARY WANTS TO PRESENT. AND REALLY CRITICAL ISSUES, FOR EXAMPLE, YOU HAVE THE GREAT DEBATE GOING ON ABOUT HOW DO WE IDENTIFY PATIENTS ACROSS HEALTH SYSTEMS? IT'S A HUGE CONVERSATION THAT NOBODY CAN SEEM TO GET A HANDLE ON AND IF YOU GO TO A CURE ORGANIZATION AND THE PATIENT IS MOVING AROUND FROM ONE DOCTOR TO ANOTHER, HOW DO YOU TRACK THAT PATIENT? SO THERE ARE THINGS THAT -- TECHNICAL THINGS WE CAN GET DONE. AND ALSO BEING A PLACE WHERE WE CAN SIT DOWN AND BREAKDOWN SOME OF THESE BARRIERS THAT ARE HINDERING THE MOVEMENT OF THE INFORMATION WE ALREADY HAVE. AND THEN FINALLY FOR ME ANYWAY, IS TO FIND WAYS GET INFORMATION OUT TO THE PUBLIC. I LOVE PUBMED BUT I KNOW A LOT OF MY FRIENDS ARE NOT GOING TO PUB MET. WHAT THEY WANT IS LIKE I PUT IN THE QUESTION AND I GET THE ANSWER ON GOOGLE. I THINK IF THE NLM CAN DO THAT, AND PROVIDE THE BACKBONE FOR THE GOOGLES AND EVERYBODY ELSE, WHERE THEY GET THE INFORMATION THEY ARE LOOKING FOR, I THINK THAT IS WHERE THE PUBLIC IS. SHORT BENEFITS OF INFORMATION AND PLUG IT INTO MY APP AND IT'S UP. YOU HAVE THE DATA THERE. >> THIS CONVERSATION, WHAT NLM SHOULD DO, THIS REMINDS ME THAT WELL R. WHEN THE BOARD WAS WORKING ON THE 2000-2005 PLAN, THAT WAS SHORTLY AFTER 1997 WAS OF COURSE THE YEAR THAT THE SPREAD OF INTERNET ACCESS WE WERE ABLE TO MAKE ACCESS TO MEDLINE PUBMED FREE. SO THAT IS WHEN PUBMED BECAME GENERALLY AVAILABLE. AND IT WAS IN THE AFTERMATH OF THAT WE HAD A PLATFORM WHERE EVERYONE HAD MOST PEOPLE COULD GET SOME PLACE WHERE THERE WAS A WEB BROWSER AND A CONNECTION TO THE INTERNET EVEN IN THE PUBLIC LIBRARY AT WORK OR WHEREVER AND INCREASINGLY AT HOME SINCE THAT TIME. WHEN WE BEGAN TO CREATE SERVICES FOR THE PUBLIC OF THE BEFORE THAT WE DIDN'T HAVE A GOOD WAY TO REACH THEM. AND BEFORE IT CHANGED IT'S POLICY ON CONSUMER HEALTH INFORMATION AT THAT TIME. I THINK WHAT I WILL DO IS GET YOU ALL A COPY I OF THAT AS SOMETHING YOU CAN HAVE. IT DEFINITELY SAID AND I REMEMBER THE STATEMENT THAT THEY THOUGHT THAT NLM'S GOAL SHOULD BE TO ENSURE THAT EVERYONE HAS A KNOWN ACCESSIBLE SOURCE OF HIGH QUALITY HEALTH INFORMATION AND THAT GETS BACK TO YOUR POINT WHICH IS, WE CAN'T TELL YOU WHAT TO DO WITH IT WHEN YOU GET IT. WE WON'T MEASURE WHETHER YOU LEARNED SOMETHING. SOMEBODY ELSE WILL HAVE TO DO THAT BUT WE COULD POTENTIALLY GET TO THE POINT WHERE MOST PEOPLE HAD A KNOWN ACCESSIBLE SOURCE OF HIGH QUALITY HEALTH INFORMATION. WHICH IS THE WAY THAT IS DEFINED. >> I JUST WANTED TO ADD THE OTHER PIECE IS TO KNOW IT COMES FROM NLM. YOU CAN PUT PUBMED OUT THERE AND WE HAVE TONSE OF PEOPLE. NO RELATIONSHIP BETWEEN THE TWO. SO I UNDERSTAND THE SOURCE OF THAT IS IMPORTANT. WHERE IS IT COMING FROM? OUTER SPACE SOMEWHERE. >> THE OTHER DAY GOOGLE'S ABILITY TO SEARCH HEALTH INFORMATION IS BUILT ON TOP OF A LOT OF THE INPUT FROM THE PUBMED'S DATA. >> SO EVENTUALLY THEY WILL SAY GOOGLE MADE PUBMED. >> BUT IT'S VERY -- NOO GOOGLE IS THE SOURCE OF ALL KNOWLEDGE. [ LAUGHS ] >> I SUGGEST ALL YOU DO THIS EXERCISE AND THAT IS TO TAKE A DISEASE THAT MAY BE SOMEBODY IN YOUR FAMILY HAS OR YOU HAVE AND SEARCH SOME TERMS IN GOOGLE. I HAVE DONE THIS 3-4 TIMES IN THE LAST 3 WEEKS AND I AM ASTONISHED 4 OUT OF THE TOP 10 LINKS ARE ACTUAL PUBMED CITATIONS THAT TAKE YOU DIRECTLY TO THE PUBMED PAGE. SO GOOGLE HAS DONE SOMETHING DIFFERENT IN TERMS OF ITS INDEXING. >> THEY ARE ALWAYS DOING SOMETHING DIFFERENT. INNOVATION AND GOING FORWARD. BUT IT IS TRUE THAT A LARGE -- THEY MAKE VERY EFFECTIVE USE OF SERVICES AND I'M GLAD THEY DO. THAT'S WHY WE ARE CREATING THEM SO MORE PEOPLE WILL GET TO THEM AND IT'S NOT A BUG. IT'S A FEATURE. >> AND HAVING SAID THAT, IT IS CLEAR IF YOU USE VERY COMMON CLAYLAN TERMS FOR VERY COMMON CONDITIONS, YOU DON'T GET PUBMED CITATIONS OR EVEN MEDLINE PLUS. YOU GET MED SCAPE AND MAYO CLINIC AND OTHER STUFF. >> AND IT'S VARIABLE DEPENDING ON WHICH LANGUAGE YOU SEARCH IN. BECAUSE IN SOME LANGUAGES, YOU ALWAYS GET MEDLINE PLUS. BUT THEY USE A CLINICIAN'S VOCABULARY. PUBMED RISES TO THE TOP. >> THE ISSUE IS THAT OUR AUDIENCE IS SO DIVERSE. WHAT ARE OUR BOUNDARIES? WHERE DOES NLM HAVE A PLAYING FIELD AS OPPOSED TO OTHER SOURCES OF INFORMATION? AND WE CANNOT DESIGN INFORMATION THAT FITS ONE SPECIFIC MODEL OR MOLD BECAUSE OUR COUNTRY IS SO DIVERSE AND THE WORLD IS SO DIVERSE AND THE GENERATIONS ARE SO DIVERSE, THE CULTURAL BACKGROUNDS ARE SO DIVERSE. AND THE ECONOMIC STATUS IS SO DIVERSE THAT IN TERMS OF AGAIN THE MARGIN NOTE, THERE HAS TO BE MULTIPLE HOOKS IN THE WATER. I'M A FISHERMAN AND I'LL PUT DIFFERENT BAIT ON DIFFERENT HOOKS BECAUSE I DON'T KNOW WHAT IS DOWN THERE. AND THAT MAY VERY WELL BE HOW TO GO ABOUT THIS. >> THE PEOPLE WHO BUILD THINGS ON TOP OF OUR SERVICES ARE THERE TO SPECIALIZE, MERGE, MATCHUP WHATEVER THEY WANT TO DO, THINGS FOR THAT PARTICULAR GROUP. AND I THINK WHAT WE WANT TO HAVE IS VERY GOOD BASIC LEVEL OF SERVICE. SO IF IT HAPPENS YOU'RE ONE OF THE PEOPLE THAT FALL BETWEEN THE CRACKS AND THERE IS NO SPECIAL FOR YOU OR YOU CAN'T AFFORD THE SPECIAL FOR YOU, THEN YOU CAN STILL GET THE INFORMATION FROM OUR BASIC SERVICE. AND THAT HAS BEEN MY VIEW AND YOU ALL GOING FORWARD CAN PLAN ABOUT WHAT YOU THINK THE FUTURE YOU IS. >> LISTENING TO THE TWO CONVERSATIONS ABOUT WHAT GOOGLE DOES AND THEN THE OTHER PART THAT RUNG TRUE WITH THAT IS WHAT IS, NEME TO NLM? WHERE CAN YOU GO -- OBVIOUSLY MONEY IS AN ISSUE. WE ARE ALL IN THE AIR FORCE I FEEL THAT EVERY DAY WHEN WE GO DOWN PROJECTS. BUT THERE ARE CERTAIN THINGS WE BRING TO THE TABLE THAT NO ONE ELSE CAN. I CAN DEPLOY OUR AIR POWER ANYWHERE IN THE WORLD AND WHEN IT COMES TO MOVING PATIENTS, I CAN GET ANYBODY IN THE ANYWHERE IN THE DROP OF A HAT. BUT IF I WANT TO MOVE MASSIVE AMOUNTS OF PATIENTS OR PRODUCE AN OBJECT THEN I HAVE TO GO OUT TO THE WORLD WHO HAS THE MONEY. AS WE LOOK AT NLM AND THE BRANDING OF PUTTING THAT OUT THERE, WHAT CAN WE DO THAT NO ONE ELSE CAN DO BECAUSE OF THE CLOUT WE BRING TO THE TABLE, WHICH IS EXTREMELY IMPORTANT? >> I THINK IT'S THE FACT THAT THERE IS BOTH A SERVICES ROLE AND A METHODOLOGY FOCUS THE WAY TO DEFINE AND ORGANIZE KNOWLEDGE AND CREATE -- SO WE HAVE BOTH THE SERVICE DELIVERY FOCUS AND INFORMED BY SCIENCE SO I THINK THE REST OF THE UNIVERSE CAN BENEFIT FROM THAT. THERE IS A CORE MISSION WE ARE TRYING TO ADVANCE HERE. >> JUST THINKING CONSUMER FOCUSED FOR A MOMENT. THE WAY I THINK IN THAT REGARD, YOU'RE LIKELY THE CREATOR OF THE RAW MATERIAL. BUT YOU'RE NOT THE RETAILER. GOOGLE IS THE RETAILER. AND I GUESS MY POINT TO YOU IS THAT YOU NEED TO BRING ENTREPRENEURS IN, RETAILERS IN AND EXPOSE THEM TO YOUR PRODUCT AND SAY, I'M CREATING THE DATA. IT HAS TO BE REPACKAGED BECAUSE YOU'RE NEVER GOING TO BE ABLE TO REACH THE DIVERSE MARKETS THAT WILL GO ON. BUT RETAILERS WANT TO DO THAT. AND BOTH IN THE SENSE OF THE DATA AND THE SYSTEM YOU ALREADY HAVE AND NEW APPLICATIONS TO HELP THEM ANTICIPATE WHERE THE MARKETING IS GOING. I THINK THAT IS A BEAUTIFUL SCENARIO. IF YOU STAY IN THAT WHOLESALE IF YOU WILL SPACE WHERE YOU CREATE RAW MATERIALS FOR THE MARKETPLACE AND THEN EDUCATING RETAILERS, I THINK YOU'RE ON YOUR WAY. >> ELLIOT? [ LOW AUDIO ] AND THE OBSERVATION ABOUT THE 206 CLEARANCE OUTCOMES -- THAT SPOKE TO WHERE DO WE WANT ONCE WE ARE THERE? SO I THINK IN TERMS OF PLANNING AND LOOKING AT EFFECTIVENESS AND EVACUATION OF OUR PROGRAMS AND SYSTEMS, THAT IS VERY IMPORTANT. >> JUST WANT US TO BE CAREFUL. WE ARE CLEARLY TALKING ABOUT TWO DIFFERENT AUDIENCES FOR NLM HERE. THE EVERYBODY TRYING TO FIND THE RIGHT TERMS, I DON'T WANT TO INSULT ANYBODY. WE CAN'T FIGURE ONE OF OUR REAL ESTATE IS TO SUPPORT SCIENCE AS WELL AND SO THERE ARE REALLY TWO AUDIENCES AND WE HAVE TO KEEP THAT IN MIND. >> AT LEAST 3. ALSO PEOPLE DELIVERING THE HEALTH CARE. >> I ACTUALLY WANT TO JUMP IN HERE AND REMIND US THAT WE ARE GETTING MORE ACCESS BY COMPUTERS THAN BY HUMANS RIGHT NOW. AND SO, WE REALLY NEED TO THINK ABOUT THE PERSON RECEIVING FROM US IS NOT THE PERSON. IT'S A MACHINE. AND THE MACHINE INTERPRETS THE ACTIONS. I DON'T KNOW HOW TO SURVEY COMPUTERS ABOUT WHAT THEY WANT FROM NLM BUT WE HAVE TO CONSIDER OUR HUGE WAYS OF DISSEMINATION IS NOT SIMPLY THROUGH HUMAN EYES. >> I AGREE WITH THAT EXCEPT THE COMPLEXITY OF THE INFORMATION IS GOING TO BE A SCALE. >> RIGHT. AND THAT IS ABSOLUTELY TRUE. BUT IT WON'T NECESSARILY BE MEDIATED THROUGH A HUMAN. >> I THINK GARY BRINGS UP THE PEOPLE WHO MIGHT WANT TO FILL VARIOUS THINGS AND I THINK THAT THAT IS A MUCH BROADER GROUP THAN WE REACH ALTHOUGH WE REACH MANY OF THEM BECAUSE THEY ARE OUT THERE DOING IT ALL THE TIME. I THINK IT'S JUST KIND OF LIKE THE PEOPLE WHO KNOW US, WE HAVE BEEN DOING BETTER AT GETTING OUT AND ENGAGING PEOPLE WHO DON'T ALREADY KNOW IF THEY WANT TO BUILD AN X THEN THEY BETTER FIND OUT WHETHER NLM HAS AN API TO X BECAUSE THEY ALREADY KNOW ABOUT X AND THEY FEEL THIS IS A SOURCE OF INFORMATION FOR THEM. AND WE JUST NEED TO KEEP OR CONTINUE TO EXPAND WHO IT IS WHO UNDERSTANDS WHAT THEY MIGHT GET FROM US. >> THIS IS A TERRIFIC DISCUSSION SO FAR. I WANT TO MAKE SURE IF WE HAVE ANYONE ELSE EAGER TO SPEAK. >> I HAVE ONE COMMENT. WE HAD LOTS OF COMMENTS ABOUT LOOKING AT NOT ONLY THE END USER AS WE SEE IT NOW AND I WOULD POSE A QUESTION. IF NLM DID NOT EXIST, WHAT WOULD HAPPEN? AND LOOKING AT IT FROM THE PERSPECTIVE OF WHAT IS CURRENTLY HAPPENING THAT IS WORKING REALLY WELL AND IS IT -- THEN ASK THE QUESTION, ARE WE GETTING TO THOSE INDIVIDUALS THAT WE REALLY WANT TO REACH THE MOST? AND THE REASON I BRING THAT QUESTION IS BECAUSE WE ARE LIVING IN A MORE DIVERSE ENVIRONMENT NOW IN THIS COUNTRY. WE ALSO HAVE DIFFERENT MECHANISMS BY WHICH WE RECEIVE OUR INFORMATION, TECHNOLOGY AND HEALTH CARE HAS CHANGED AND THE PERCEPTION OF HEALTH HAS DRASTICALLY CHANGED. AND THE NAME OF THE ORGANIZATION HERE AT HHS IS THE NATIONAL INSTITUTES OF HEALTH. BUT WE ARE FOCUSED ON A DISEASE PROCESS FOR THE MOST PART. AND I ENJOY HEARING THE ARTICULATION FROM BETSY ABOUT HOW ARE WE DEFINING HEALTH? IS THAT REALLY WHAT OUR GOLD STANDARD IS GOING TO BE AS WE START TO LOOK AT ALL THE INNOVATION? THE GOAL OF HAVING GENOTYPE PHENOTYPE AND BIOMETRICS AND ALL THE DATA BEING PRODUCED IN OUR HEALTH TECHNOLOGY SYSTEMS TODAY IS TO GET US TO A BETTER STATUS OF HEALTH WE CAN CLOSE THE GAP ON HEALTH DISPARITIES AND ELIMINATE THOSE GAPS IN CARE AND URBAN AND RURAL COMMUNITIES. SO HOW DOES NLM PLAY A ROLE IN THAT AND THEN HOW DO WE REACH THE INDIVIDUALS WHETHER IT BE A SCIENTIST FROM THE BENCH OR A HEALTH-CARE PROVIDER FOR THE BEDSIDE OR AS WE GO FORWARD, COMMUNITY HEALTH WORKER IN RURAL AMERICA WHO IS PROVIDING THAT HANDS ON CARE AND WANT TO FIGURE OUT WHAT IS THE BEST OPTION WITH LIMITED RESOURCES? I JUST POSE THAT BECAUSE THIS HAS BEEN AN EXCELLENT CONVERSATION AND I LOVE PUBLIC HEALTH. AND I SEE THERE IS A ROLE FOR NLM AND A VERY DIFFERENT ENVIRONMENT AND IT'S VERY DIVERSE CHANGING WORLD WE ARE ABOUT TO EMBARK UPON. BUT I WOULD JUST VEEPATURE TO SAY THAT IF NLM DEPENDENT EXIST WHAT THEN AND HOW TO CHANGE THAT CURVE TO USE THE RETAILER TO CARE FOR THE RAW MATERIALS WE ARE NOW PRODUCING. >> EXCELLENT. >> SO THERE WAS A MOMENT, DRAMATIC MOMENT IN DISCUSSIONS WITH THE WHITE HOUSE CHIEF SCIENCE DATA SCIENCE GUY, DJ PATEL, WHEN GENE WHO MAY BE IN THE ROOM, WHO ASKED BY THIS FORMAL SILICON VALLEY EXECUTIVE WHO BECAME THE CHIEF DATA SCIENTIST AND THIS IS THE ANSWER TO YOUR QUESTION OF WHOLESALING VERSUS RETAILING. WHAT IS THE VOLUME OF TRANSACTIONS AT NLM? AND JIM SAID, WE SERVICE 7000 REQUESTS PER SECOND. AND THE ENTIRE GROUP OF SILL COP VALLEY EXECUTIVES JUST -- SILICON VALLEY -- AND THEY JUST FROZE AND THEY REALIZED IT WAS AT A SCALE THEY HAD NO IDEA WAS OCCURRING WITH THESE THINGS COMING FROM ALL OVER. SO I THINK IT SPEAKS TO THE REAL WORLD VIEWS AT THE RETAIL LEVEL IS ASTONISHING AND WE SHOULDN'T DISCARD THAT NOTION OF THE ROLE TO BE A GOOD RETAILER AS WELL AS WHOLESALER. [ LOW AUDIO ] DEALING WITH COMMUNICATION -- IF WE ARE GOING TO GET DATA WE HAVE TO BE ABLE TO GET IT AND WE HAVEN'T SOLVED THAT QUIET SO THERE IS PLENTY OF WORK TO DO THERE. THE SECOND THING, INFORMATION DISPLAY AND DISSEMINATION AND SHOUTING ABOUT IT AND YELLING ABOUT IT, IS SOMETIMES WE ARE TELLING THE WRONG STORIES, LIKE DIABETES AND SUGAR AND FAT. WE REALLY HAVE DONE A WRONG ENVIRONMENT FOR 50 YEARS. SCIENCE CAME OUT WITH AN ARTICLE SAYING DON'T PAY ATTENTION. YESTERDAY THERE WAS SOMETHING IN THE PAPER ABOUT WE HAVE OVER ADVERTISED SUGAR. FAT IS GOOD. SO SOMEHOW WE HAVE TO -- I DON'T KNOW HOW TO DEAL WITH THAT BUT THERE IS THESE BAD THREADS THAT YOU GET PEOPLE SICKER THAT WE DON'T NECESSARILY PICK UP ON. AND THE THIRD THING IS IN THE FUTURE, I DON'T THINK COMPUTERS HAVE DONE SQUAT VERSUS DOCTORS YET. I HAVE BEEN A COMPUTER GUY FOR MOST OF MY LIFE BUT WE STILL CAN'T DEAL WITH HOW SICK THE PATIENT IS AND ALL THESE OTHER THINGS AND FOR THE FUTURE I THINK WE SHOULD BE THINKING ABOUT VISION. BECAUSE THAT IS HOW DOCTORS TELL STUFF. THEY DON'T LOOK GOOD. AND FOR THE FUTURE THREAD, WE SHOULD BE ABLE TO DO AS WELL AS OR BETTER THAN THAT CAR THAT HIT THE UNDERPASS. I DON'T WANT GO INTO THAT BUT WE SHOULD BE ABLE TO DETECT THIS PATIENT IS WALKING FUNNY. THAT COULD BE DONE AUTOMATED FOR SURE -- >> I JUST THIS WEEK'S ECONOMIST HAS A VERY GOOD ARTICLE ON THE ART OF THE LIE AND THIS IS A QUOTE IN THERE THAT INFORMATION GLUT IS THE NEW SEPSORSHIP. >> THAT IS INTERESTING. >> CENSORSHIP. IT'S JUST A LOT OF STUFF. AND WHAT I WONDER IS, YOU DON'T WANT TO NECESSARILY TRY TO PLAY THAT GAME. YOU WANT ANOTHER APPROACH. I DON'T WANT KNOW WHAT THAT IS. I WILL SAY I HAVE SEEN A VISION OF IT WITH EDUCATION. AND THIS WAS PURELY EDUCATIONAL INTEREST. I WAS GOING TO CAROLINA BIOLOGICAL FOR ABOUT 745 DOLLARS YOU CAN BUY A HOME PCR AMPLIFICATION KIT. HIGH SCHOOL STUDENTS ARE USING THESE TO DO DNA BARCODING AND TEST WHAT IS ACTUALLY IN PRODUCTS THAT ARE ON RETAIL STORE SHELVES. IN NEW YORK STATE THE ATTORNEY GENERAL WAS ABLE TO GET SOME HERBAL REMEDIES TAKEN OFF THE SHELF FROM CVS AND THEY WERE GOING -- TO BLAST AND BOLD AND NLM-SPONSORED DATABASES IN ORDER TO UNDERSTAND WHAT WAS THERE. AND I JUST THOUGHT -- IT WAS AN AMAZING THING IN HELPING PEOPLE. SO YOU'RE HELPING PEOPLE UNDERSTAND HOW YOU USE EVIDENCE AND GENERATE IT AND THEN KNOWLEDGE DOESN'T COME FROM TYPING INTO GOOGLE. IT COMES FROM HARD WORK AND INSTRUMENTATION AND CAREFUL METHODS AND THOSE AR WHAT I THINK IS VERY USEFUL IS TO START THINKING ABOUT WHAT I MENTIONED EARLIER, THE AUDIENCE REPORT. I HEARD MENTION THE CONSTITUENCIES THAT WE ARE TRYING TO REACH OUT TO AND THE STAKEHOLDERS BASICALLY ALL THE SAME IN SOME SEPS. SO, IF WE THINK ABOUT OUR CHARGE AND WE DIVISION INTO WORKING PANELS THAT ARE GOING TO COME UP WITH CHARACTERIZATION -- RECOMMENDATIONS, MAYBE WE CAN ALMOST IDENTIFY THOSE FIRST, CONSTITUENCIES AND THEN START SORTING THEM AS WE BEGIN TO DEVELOP THE CHARGE. YOU ALL MENTIONED A NUMBER OF POTENTIAL STAKEHOLDERS. SO I THINK IT WOULD BE USEFUL TO KIND OF SLEEP ON IT AND THINK ABOUT IT AND MAYBE TALK AMONG YOURSELF AND BE PREPARED TO IDENTIFY WHO OUR STAKEHOLDERS ARE AND IN TERMS OF SPECIFIC ORGANIZATIONS AND ENTITIES, GOVERNMENT AND OTHERWISE, THAT SHOULD BE REPRESENTED ON PANELS AND I THINK IT IS A LITTLE BIT ORTHOGONAL TO THE TOPICS BUT I THINK THEY COME TOGETHER. >> LET ME JUST MAKE ONE COMMENT. I THINK FOR THOSE OF YOU IN THE ROOM UNDERSTAND, THIS IS FEDERALLY ADVISORY COMMITTEE. AND WHEN WE PUT THESE PLANNING PANELS TOGETHER, WE ARE GOING TO PUT PEOPLE ON THERE BECAUSE OF THEIR PARTICULAR EXPERTISE AND POINT OF VIEW. BUT WE ARE NOT GOING TO SAY, GARY IS THE ONE THAT IS REPRESENTING THIS SOCIETY. OR THIS OUTSIDE PERSON IS REPRESENTING THE AMERICAN NURSE'S ASSOCIATION. WE ARE PUTTING PEOPLE TOGETHER BECAUSE THEY HAVE EXPERTISE BUT NOT ASKING THEM TO REPRESENT ANOTHER ORGANIZATION OR ASSOCIATION. >> LET ME ASK ABOUT THAT. FOR EXAMPLE, COULD WE -- >> MY FEELING IS WE WANT THE PERSPECTIVE OF PEOPLE WHO UNDERSTAND AND WE WILL CERTAINLY WANT TO HAVE -- BUT WE WILL NOT HAVE SOMEONE WHOSE JOBS IT IS TO REPRESENT THE VIEWS OF AN ASSOCIATION. >> WE ARE NOT SUPPOSED TO? >> IT WOULD BE AWKWARD TO SELECT WHICH ASSOCIATIONS GOT A VOICE AND WHICH DIDN'T. >> I MEAN, IF YOU SAY TO THE AMA IS REPRESENTED THEN THE AMA NEEDS TO BE REPRESENTED AND THEN THE APHA NEEDS TO BE REPRESENTED AND WHARF. BUT YOU CAN FIND INDIVIDUALS WHO REPRESENT POINTS OF THE VIEW AND MANY OF THESE PEOPLE ARE GOING TO ACTUALLY UNDERSTAND THE POINTS OF VIEW OF MULTIPLE STAKEHOLDERS. >> I THINK THAT BY INDIVIDUALS WHO HAPPEN TO BE LIKE YOURSELF, WHEN YOU WERE PART OF NCI, WHO HAD A PERSPECTIVE ON THAT PARTICULAR ISSUE. AND WE CAN ALSO OBVIOUSLY TALK TO OUR PARTNERS AND FEDERAL AGENCIES. WE MIGHT NOT SAY YOU'RE HERULE ON THIS PANEL AND BRING INDIVIDUALS IN BECAUSE THEY FOCUSED ON THESE ISSUES. >> IT REMINDS ME THAT WE'LL NEED SOMEONE TO READ US THE RULES OF ORDER IN CASE WE STEP IN A MUD HOLE. >> THE FACT IS THAT NLM IS THE CONDUIT. NLM IS AN EFFICIENT AND THE DISTRIBUTOR AND IN SOME CASES THE PRIMARY DISTRIBUTOR OF THE INFORMATION THAT IS CREATED BY OTHER FEDERAL AGENCIES BUT ALSO THE PRIMARY DISTRIBUTOR OF INFORMATION IS SUBMITTED TO OTHER AGENCIES BY OTHER PEOPLE. FOR EXAMPLE WE ARE THE PRIMARY DISTRIBUTOR OF STRUCTURED PRODUCT LABELS THAT ARE SUBMITTED TO FDA AND WE ARE THE PRIMARY DISTRIBUTOR OF THE UNIVERSE IDENTIFIER REGISTRATION DATA THAT GOES TO FDA THAT THE IS AN EXAMPLE SO WE DO HAVE RELATIONSHIPS WITH THOSE GROUPS AND OBVIOUSLY, WE HAVE PARTNERSHIPS WITH THEM THAT HAVE TO BE CONSIDERED AND IT GETS BACK TO WHAT CHRIS WAS SAYING AND MEG. IF WE HAVE A VERY NICE COMPLIMENTIARITY NOW OR IF WE ARE PROVIDING SERVICES TO OTHER GOVERNMENT AGENCIES HERE, THEN WE ARE NOT SORT OF INDEPENDENTLY IN A VACUUM SAYING BYE TO THAT ONE. THAT'S SOMETHING THAT WILL HAVE TO BE OBVIOUSLY -- SO IT'S A MAYBE. >> YOU WANT THEM SO HAVE OFFICIALLY INFORM PASSING OR HAVE PEOPLE FROM THOSE COMMUNITIES LIKE FDA OR SURGEON GENERAL PARTICIPATE BUT NOT AS A SPOKESPERSON ABOUT THE AGENCY. I COULD SEE IT GOING BOTH WAYS. >> SOME OF THE PANEL AREAS COMING AT TO THE FROM EXPERTISE, SCIENTISTS OR WHATEVER. >> AND I THINK KNOWING WHEN WE ARE BEGINNING TO TIP-TOE THROUGH A MINE FIELD WILL HELP CORAL -- >> I THINK THAT'S THE PURPOSE. >> WE ARE IN THERE WE'LL NEED YOU TO TELL US WHERE TO PUT OUR FEET AND ALSO WITH WHEN WE CROSSED INTO ONE. >> OR WE'LL APOLOGIZE FOR HAVING BEEN THERE. GEE DAN, THAT WASN'T THE RIGHT PLACE TO GO. >> ANY CLOSING COMMENTS? WE ARE 5 MINUTES INTO THE LUNCH HOUR. EVERYBODY KNOWS WHERE LUNCH IS? BACK AT 1:00 >> SO I'VE BEEN ASKED TO MAKE AN ANNOUNCEMENT AND I WAS PROBABLY THE GUILTY CULPRIT BUT IF ANYBODY HAS THEIR LAPTOP MAKING PINGING NOISES LIKE WHEN NEW MESSAGES ARRIVE. PUT IT ON MUTE BECAUSE IT'S DISTURBING THE PEOPLE WHO COME IN REMOTELY. I GUESS IT REVERBERATES. SO KINDLY DO THAT. WE ARE AT--LET'S SEE, WHERE I AM ON THE AGENDA PAGE HERE. OKAY, WE ARE NOW GOING TO HEAR ABOUT THE GENETICS HOME REFERENCE OVERVIEW AND CURRENT STATUS BY STEPHANIE MORRISON WHO'S IN THE COGNITIVE SCIENCES BRANCH FROM THE LISTER HILL CENTER. >> GOOD AFTERNOON. I WOULD LIKE TO THANK THE BORED FOR THE OPPORTUNITY TO GIVE YOU AN OPPORTUNITY TO GIVE YOU AN OVERVIEW OF THE HOME GENETICS REFERENCE. WE'RE THE HOME SOURCE ABOUT GENETIC CONDITIONS AND RELATED GENES AND CHROMOSOMES AND THE NLM HAS A LOT OF GENETIC INFORMATION, NCBI HAS ALL KINDS OF DATABASES AND BIG DATA WONDERFUL THINGS THAT ARE MADE FOR RESEARCHERS AND WHAT'S SPECIAL ABOUT GENETICS HOME REFERENCE IS ITS AIMED AT PUBLIC, PATIENTS, FAMILIES, PEOPLE LOOKING FOR HEALTH INFORMATION. LET SO TODAY WHAT I WOULD LIKE TO DO IS GIVE YOU A BRIEF BACKGROUND OF OUR PROJECT AND IT'S HISTORY. I'D LIKE TO TALK ABOUT A RECENT REDESIGN WE UNDERWENT BASED ON USER FEEDBACK THAT WE GOT AND THEN FINALLY TALK ABOUT FUTURE PLANS AND WHAT WE WOULD LIKE TO DO GOING FORWARD. SO FOR BACKGROUND, BACK IN THE REALLY EARLY 2000, YOU WILL REMEMBER THAT THE DRAFT SEQUENCE OF THE HUMAN GENOME HAS JUST BEEN ANNOUNCED AND THE HUMAN GENOME PROJECT WAS STARTING TO WRAP UP AND JOYCE MITCHELL WAS HERE, SHE'S A FORMER CHAIR OF THIS BOARD AND SHE AND DR.LINDBERGH AND ALEXIA MCCRAE THOUGHT, YOU KNOW WE DON'T THINK THERE'S MUCH INFORMATION ABOUT GENETICS AVAILABLE FOR PATIENTS BUT THERE'S INCREASING INTEREST WITH THE HUMAN GENOME PROJECT FINISHING UP, PEOPLE REALLY WANTED TO KNOW WHAT DOES THIS MEAN AND WHAT DOES IT MEAN FOR MY HEALTH. SO EARLY 2002, THEY DID AN INVESTIGATION OF HELP DESK QUERIES SO THESE CAME IN THROUGH THE CUSTOMER SERVICE HERE AT NLM, ASKING ALL DIFFERENT KINDINGS OF QUESTIONS AND THEY FOCUSED ON 1S THAT WERE ABOUT GENETICS AND THEY FOUND THAT PEOPLE WERE ASKING EVEN THAT EARLY, QUESTIONS ABOUT WHAT GENETICS MEANT TO THEIR HEALTH. AND SO THEY FOUND THEN THAT THE PUBLIC IN FACT WAS INTERESTED IN THIS INFORMATION. AND THEN THEY SET OUT TO FIND WAYS TO ANSWER THESE QUESTIONS. WHAT RESOURCES WERE ALREADY AVAILABLE TO ANSWER THEM AND THEY FOUND THAT THERE WERE RESOURCES AVAILABLE ONLINE BUT THERE WEREN'T EASY FOR PATIENTS AND FAMILIES TO FIND OR TO NAVIGATE OR TO UNDERSTAND BECAUSE FOR THE MOST PART THEY WERE AIMED AT BIOLOGISTS AT PEOPLE WHO WERE TRAINED IN GENETICS AND AT CLINICIANS, SO THERE WAS A NEED IDENTIFIED FOR ACCESSIBLE AND HIGH QUALITY GENETIC INFORMATION SPECIFICALLY FOR THE PUBLIC. SO OUR WEB SITE LAUNCHED IN 2003 AND ANNOUNCED THE FINAL SEQUENCE OF TED HUMAN GENOME AND WHEN THE SITE LAUNCHED WE HAD 3 MAJOR DESIGN PRINCIPLES THAT JOYCE LAID OUT, THEY INCLUDED 1, MAKE THE SITE EASY FOR PUBLIC TAKEN--THEY ACCESS WITH UNDERSTANDABLE CONTENT 2, TO INTEGRATE AND INTERRELATE CONSISTING RESOURCES FOR CONSUMER RESOURCES ON 1 HAND AND CLINICAL AND STATISTIC RESOURCES ON THE OTHER AND 3 TO CREATE AN INFORMATIC BASED RESOURCE THAT WOULD ALLOW FOR SUSTAINABILITY AND FOR SCALABILITY BECAUSE WHEN WE STARTED, WE HAD ONLY 16 HEALTH CONDITIONS IN 19 GENES. THAT WAS THE WHOLE OF GENETICS WHEN WE LARCHED IN THE YEAR 2003. SO REALLY WHEN WE LAUNCHED, WE WERE THE FIRST GROUP THAT WAS REALLY TRYING TO BRIDGE THE TECHNICAL BRIDGE, AMAZING GENETIC DATA COMING OUT OF GENOMIC RESEARCH WITH CONSUMER INTEREST AND CONSUMER NEEDS. AND TODAY THERE WAS DISCUSSION OF THE ACD REPORT, DENATIONAL LIBRARY OF MEDICINIC REFERENCE HELP SUPPORT THE LIBRARY'S COMMISSION OF DISSEMINATING AUTHORITATIVE AND TRUSTED HEALTH INFORMATION TO THE PUBLIC TO HELP CARE FOR PROFESSIONALS AND FOR RESEARCHERS OF WORLD WIDE. SO TODAY WE SCALED UP QUITE A BITE. WE OFFER MORE THAN 2400 GENETIC SUMMARIES AND THAT INCLUDES MORE THAN 1100 HEALTH CONDITIONS AND THESE RANGE FROM THINGS THAT ARE SO RARE THAT ONLY A FEW FAMILIES WORLD WIDE HAVE EVER BEEN DIAGNOSED WITH THEM TO THING THAT ARE VERY COMMON AND YOU MIGHT NOT THINK OFA AS GENETIC DISEASES OR KNOWN TO HAVE THIS COMPLEAT ETIOLOGY THAT HAVE A GENETIC COMPONENT SO THERE'S A BROAD, BROAD RANGE OF INFORMATION THAT'S AVAILABLE FOR GENETIC HOME REFERENCE. WE ALSO INCLUDE MORE THAN 1300 GENES SO INFORMATION FOR THE PUBLIC ABOUT GENES THAT ARE RELATED TO THESE DISORDERS, AND REALLY THAT INFORMATION THAT DOESN'T AVAILABLE AS FAR AS I KNOW FROM VERY MANY OTHER PATIENTS AND CERTAINLY NOT AT THIS BREDTH. PEOPLE DON'T GENERALLY PROVIDE INFORMATION ABOUT GENES AND THEIR FUNCTIONS AND PROTEINS AND BIOCHEMISTRY IN THE WAY THE GENERAL PUBLIC IS GOING TO BE ABLE TO DIGEST. THE WEB SITE ALSO INCLUDES SUMMARIES, PAGES ABOUT EACH OF THE HUMAN CHROMOSOMES AND MITOCHONDRIAL DNA. IN ADDITION, WE HAVE A MULTICHAPTER INTRODUCTION THAT'S ILLUSTRATED TO THE FUNDAMENTALS OF HUMAN GENERATEDETETS AND WE CALL IT HELP ME UNDERSTAND GENERATEDET 8 HOURSS. AND IT STARTS AT THE VERY BEGINNING OF WHAT IS A CELL AND WHAT IS A GENE? WHAT IS DNA? HOW DO THESE FIT TOGETHER. AND FROM THERE PROVIDES MORE CONTEXTURAL INFORMATION ABOUT GENERATEDET MUTATION, HERITANCE, TESTING, WHAT'S GOING ON IN GENOMICS RESEARCH, PRECISION MEDICINE, GIVING PEOPLE A BRIEF, RELATIVELY HIGH LEVEL OVERVIEW OF THESE THINGS UNDERSTANDING THEY MAY NOT HAVE MUCH FAMILIARITY WITH THEM AT ALL WHEN IT COMES TO GENETIC REFERENCE. SO THE WEB SITE IS PUBLISHED EACH WEEK TO GET NEW INFORMATION OUT AS SOON AS WE CAN. AND I WANT TO TALK ABOUT HOW WE GET THE INFORMATION THAT WE PUT ON THE WEB SITE. SO THE CONTENT OF GENETIC HOME REFERENCE IS WRITTEN AND UPDATED BY STAFF HERE AT NLM. NOW NLM IS WELL KNOWN FOR ITSELF ABILITY TO ORGANIZE INFORMATION AND CONTENT THAT'S CREATED ELSEWHERE. BUT, BACK IN--IN THE EARLY 2000S, THERE WAS A NEED THAT WAS DISCOVERED THAT THIS INFORMATION REALLY WASN'T AVAILABLE ELSEWHERE. SO THE STAFF HERE IS TRAINED IN GENETICS AND PUBLIC HEALTH AND SCIENCE WRITING AS WELL, TO REALLY TAKE THE LITERATURE, TO ACCEPTINGICIZE IT AND TO PUT IT--SYNTHESIZE IT AND PUT IT IN TERMS THAT LAY PEOPLE WILL UNDERSTAND. NOW OUR STAFF IS SMALL AND WE CAN'T BE EXPERTS IN ALL THESE VARIOUS GENETICS CONDITIONS WE WRITE ABOUT SO WE PARTNER WITH HUNDREDS OF EXPERT REVIEWERS PRACTICES,A ROUND THE WORLD INCLUDING 74 FROM RIGHT HERE AT NIH AND 14 DIFFERENT ICs AND WHAT THE EXPERTS DO IS WE APPROACH THEM AND ASK IF THEY WOULD BE WILLING TO REVIEW THE INFORMATION THAT WE'VE WRITTEN FOR SCIENTIFIC ACCURACY. ARE WE SEEING EVERYTHING RIGHT? THESE ARE EXPERTS WHO WORK WITH PATIENTS WHO ARE DOING RESEARCH IN THESE PARTICULAR DISORDERS AND THEY REALLY KNOW. SO WE'RE NOT ASKING THEM TO WRITE EVERYTHING. THAT WOULD BE A HUGE BURDEN BUT JUST TO REVIEW AND THEY GIVE US SOME FANTASTIC FEEDBACK SO WE CAN MAKE SURE THAT WE PUT ON THE WEB SITE ARE ACCURATE AND CREDIBLE. SO BEFORE EACH PAGE IS POSTED FOR THE FIRST TIME AND THEN AGAIN WITH EACH MAJOR UPDATE, WE HAVE AN EXPERT WHO WILL BE ONBOARD PROVIDING FEEDBACK TO US. WE ALSO PARTNER WITH SUPPORT AND ADVOCACY GROUPS. WE FIND THEY GIVE US A REALLY UNIQUE AND USEFUL PERSPECTIVE ON OUR CONTENT AND THIS IS COORDINATED THROUGH A FORMER PARTNERSHIP WITH THE GENETIC ALLIANCE AND THE GENETIC ALLIANCE AN UMBRELLA ORGANIZATION, YOU MIGHT HAVE HEARD OF, THEY HAVE MORE THAN 1200 MEMBER GROUPS REPRESENTING ALL MANNER OF RARE AND GENETIC DISEASES. SO THEY REACH OUT TO CONSTITUENCIES AND SAY, WOULD YOU LOOK AT GENETICS HOME REFERENCE CONTEXT THAT IS RELEVANT TO YOUR INTEREST AND LET US KNOW HOW WE CAN IMPROVE IT. ARE THERE THINGS THAT NEED TO BE UPDATED. WE'VE GOTTEN VALUABLE FEEDBACK THAT WAY AND SO FOR EXAMPLE YOU HEARD FROM A DOWN SYNDROME GROUP THAT SAID, WE READ THROUGH YOUR INFORMATION ABOUT DOWN'S SYNDROME AND WE THINK YOUR LANGUAGE IS VERY NEGATIVE. IT JUST STRUCK US AS BEING VERY NEGATIVE, SO IF YOU MADE MINOR CHANGES TO YOUR WORDING SO FOR EXAMPLE, INSTEAD OF SAYING RISK OF HAVING A CHILD WITH DOWNS SYNDROME, AND INSTEAD SAYING A CHANCE OF HAVING A CHILD WITH DOWNS SYNDROME. SO THESE MADE THESE MORE PALLETTABLE FOR THE COMMUNITY. USING THE TERM THAT THEY'RE COMFORTABLE WITH. SO BETWEEN EXPERT REVIEWERS WHO ARE GOING TO TELL US ABOUT SCIENTIFIC ACCURACY AND THE POINT ADVOCACY GROUPS ARE GOING TO TELL US MORE ABOUT WHAT THE PATIENT COMMUNITY IS LOOKING FOR AND WE FIND THESE ARE VALUABLE, VERY VALUABLE WAYS TO PUT TOGETHER A CREDIBLE AND USEFUL RESOURCE. SO WHO'S THE AUDIENCE FOR GENETIC HOME REFERENCE. FOR A LONG TIME WE DESIGNED SITE AS I SAID WITH PATIENTS AND FAMILIES IN MIND. AND FOR A LONG TIME WE WEREN'T SURE WHO WAS USING THE SITE BUT A COUPLE YEARS AGO, WE STARTED RUNNING A CUSTOMER SATISFACTION SURVEY O I'M SURE YOU'RE FAMILIAR WITH THE SURVEYS THAT POP UP IN THE CORNER WHEN YOU'RE PERUSING THE INTERNET AND PEOPLE HAVE JUST BEEN THRILLED TO GIVE THEIR FEEDBACK. I HAVE TO SAY HA WHEN I ENCOUNTER THOSE, I OFTEN THINK OF THE X AND CLICK IT A BUNCH OF TIMES, YOU KNOW, NO THANK YOU. BUT PEOPLE HAVE RESPONDED WONDERFULLY TO THIS SURVEY AND THEY PROVIDED A TON OF DAT A. WE ASK PEOPLE, WHAT IS YOUR ROLE, WHAT INFORMATION ARE YOU INTERESTED IN AND HOW CAN WE IMPROVE WHAT WE'RE DOING. SO WHAT WE FOBBED FROM OUR SURVEY IS--PRETTY LARGE PERCENTAGE OF OUR USERS ARE TEACHERS AND HEALTH PROFESSIONALS AND FIND OUT IT'S JUSTICE COUNSEL SAYS AS YOU MIGHT EXPECT BUT GENERAL PRACTICE PHYSICIANS AND NURSES AND OTHER HEALTH PROFESSIONALS AND WE FIND THAT MUCHERS, LIBRARY--RESEARCHERS AND USING THIS TO THE REFERENCE. SO LIKE OTHER LIKEERARY RESOURCES WE HAVE THIS BROAD CONSTITUENCY TO TO MEET THEIR NEEDS. WE KNOW THAT STEREO% OF 3 OUT OF 4 VISIT IT IS ARE FIRST TIME VISITORS AND MORE THAN HALF SAY THEY'RE LOOKING FOR INFORMATION ABOUT A SPECIFIC DISEASE OR HEALTH CONDITION AND THAT'S VERY USEFUL FOR US TO KNOW. PARTICULARLY WHEN WE ARE REDESIGNING THE WEB SITE WHERE TO SPEND MOST OF OUR EFFORTS. THE 86%, I LIKE THIS, SAID THAT THEY WERE ABLE TO FIND THE INFORMATION THAT THEY NEEDED ON HOME GENETICS REFERENCE. AND THE PEOPLE WHO SAID NO,EE ASKED WHAT THEM WHAT IS IT YOU WERE LOOKING FOR? AND THIS ALSO WAS A TERRIVIC SOURCE OF DATA BECAUSE WHY CAN TELL US, IF THEY SAY THEY WERE UNABLE TO FIND SOMETHING, ARE BUT WE KNOW IT'S AVAILABLE, THAT'S A USABILITY ISSUE WE CAN ADDRESS AND IT IF THEY WERE UNABLE TO FIND SOMETHING AND WE DON'T HAVE IT, IT'S THINGS WE CAN CONSIDER ADDING IN THE FUTURE. MORE THAN HALF ARE STILL VISITING FROM DESKTOPS, THE MOBILE USE HAS GONE UP AND UP OVER TIME. 84% IS THE SEARCH ENGINE SO AS THE BOARD WAS DISCUSSING, HOW DO YOU LOOK FOR HEALTH INFORMATION, YOU TYPE IN THE DISORDER THAT YOU'RE INTERESTED OR HEALTH CONDITION YOU WANT TO KNOW MORE ABOUT AND YOU GO FROM THERE. WE FOUND FOR SOME OF THESE RARE DECEASES, GENETICS IS 1 OF THE ONLY SOURCES AVAILABLE SO WE'LL COME UP FIRST, SECOND, THIRD IN THE GOOGLE SEARCH LIST. TRAFFIC TO THE SITE VARIES WITH THE DAY OF THE WEEK AND ALSO WITH THE TIME OF THE YEAR WITH LOW POINTS ON SATURDAYS, HIGH POINTS MIDWEEK, MAKES SENSE, YOU KNOW YOU ARE THINKING ABOUT DOCTORS AND STUDENTS AND WHEN ARE THEY WORKING. IT ALSO VARIES WITH THE ACADEMIC CALENDAR SO WE GET THE MOST, YOU KNOW, IT'S WHEN SCHOOL'S IN SESSION, DURING THE SUMMER, PICKS BACK UP DURING THE FALL, OVER THE HOLIDAYS, IT'S QUITE DRAMATIC WHEN YOU LOOK AT THE CHARTS. SO IN ADDITION TO BEING PART OF THE LARGER COMMUNITY, IT INTEGRATES WITH MANY OTHER NLM HERE AT HOME SO WHEY MAKE RECIPROCAL LINK WITH MEDLINE PLUS, CLINICALTRIALS.GOV, AND WITH THE GENETIC TESTING REGISTRY WHICH IS NCBI RESOURCE FOR GENETIC TEST, THEY'RE CLOSING IN ON ALMOST 10,000 TESTED DISEASES. SO THEY IDENTIFY LABS FOR GENETIC TESTING FOR ALL OF THESE DISEASES, AND THESE ARE ALSO AVAILABLE FROM MEDLINE PLUS CONNECT WHICH IS A SERVICE THAT PROVIDES HEALTH INFORMATION FOR ELECTRONIC HEALTH RECORDS AND PERSONAL HEALTH RECORDS AND SIMILAR SYSTEM. AND HO HOW DO WE DO THIS. THIS INTEGRATION ONLY WORKS BECAUSE WE'RE ALL MAPS 2 STANDARDS OF VOCABULARY AND SO EACH OF THESE HEALTH CONDITIONS ARE MAPPED TO ITS MESH MAJOR HEADING WHEN THERE IS 1. IT'S SNOWMED CT CODE AND WHEN HAVE YOU ALL THE RESOURCES DOING THIS MAPPING, IT'S MUCH EASIER TO MAKE THE 1-1 MATCHES. SO THE CORRECT--HEALTH INFORMATION ABOUT A PARTICULAR CONDITION ON MEDLINE PLUS CAN LINK BACK AND FORTH WITH THAT SAME HEALTH ON GENETICS HOME REFERENCE WITHOUT NECESSARILY HUMAN HAVING TO BE INVOLVED IN MAKING THAT MATCH. --WE ASKED OURSELVES WHAT CAN WE DO TO BRING THIS UPTO DATE AND HOW CAN WE IMPROVE THE LOOK AND FEEL OF THE NAVIGATION RESOURCE. HERE'S A PREVIEW OF THE NEW LOOK HERE, THIS IS THE NEW HOME PAGE. IT LOOKED MORE MODERN, CLEANER AND SIMPLER AND HOPE IT'S MORE STRAIGHT FORWARD FOR PEOPLE TO NAVIGATE. SO FIRST THING WE DID WHEN WE WERE THINK BEING REDESIGNING WAS WE WENT TO OUR USER AND WE SAID HOW CAN WE IMPROVE GENETICS HOME REFERENCE AND VIA OUR SURVEY, WE HAVE ALMOST 5000 OF THESE RESPONSES TO THIS PARTICULAR QUESTION. AND PRIOR TO THE REDESIGN, 2 THEMES CAME UP A LOT. ONE WAS I WOULD LIKE TO SEE MORE IMAGES, HAVE YOU ALL TEXT AND IT WOULD REALLY HELP IF YOU WOULD ADD VISUALS TO THE WEB SITE. AND THE SECOND 1 WAS, YOU GUYS, YOUR SITE LOOKS SO OLD. YOU NEED TO GET A DESIGNER, PLEASE GET AN ARTIST, IT JUST LOOKS OLD, SO WE WERE THINKING THAT'S NOT ENOUGH, NOT ENOUGH, RIGHT TO JUST LOOK OLD. WE STARTED GETTING COMMENTS LIKE THIS, WHERE PEOPLE WERE SAYING, I THOUGHT YOUR SITE WAS OUTOF DATE AND WHEN I GOT THERE, I WANTED TO LEAVE BECAUSE I FIGURED NOBODY WAS MINDING THE SHOP. BUT THEN I LOOKED HARDER AND I FOUND, OH NO THIS IS GOOD NEW INFORMATION BUT THE WAY YOUR SITE LOOKED TURN ME OFF AND IT DIDN'T SEEM CREDIBLE SO I ALMOST LEFT AND THAT WE PAID ATTENTION TO. SO THE FEATURES OF THE REDESIGN BASED ON FEEDBACK INCLUDE THE BRAND NEW HOME PAGE, I JUST SHOWED YOU, THE LOGO, WE DID A LOT MORE WITH COLORS AND ICONS TO HELP ORIENT PEOPLE TO WHERE THEY AREOT WEB SITE. WE ADDED MORE THAN 200 EDUCATIONAL IMAGES IN DIRECT RESPONSE TO WHAT OUR USERS SAID THEY WANTED AND SOME OF THESE WERE PUBLIC DOMAIN IMAGES FROM CDC, FROM ELSEWHERE AT NIH. WE USED STOCK IMAGES AND THE APBBGROUP PUT TOGETHER IMAGES AS WELL. WE IMPROVED NAVIGATION OVERALL INCLUDING DROP DOWN MENUS ON EACH PAGE SO CAN YOU JUMP RIGHT TO THE INFORMATION THAT INTERESTS YOU AND IMPORTANTLY WE MADE THE SITE MOBILE RESPONSIVE WHICH IT WASN'T BEFORE, SO BEFORE IF YOU WENT TO GENETICS HOME REFERENCE TO THE PHONE, YOU GOT THE HOME PAGE REALLY, REALLY SMALL, EXACTLY HOW IT LOOKEDOT DESKTOP. NOT THE CASE ANYMORE AND I WANT TO SHOW THAT TO YOU. SO DO I WANT TO GIVE YOU A QUICK DEMO OF THE WEB SITE HERE. WELL YOU CAN GET AN IDEA HERE ON HOW IT LOOKSOT MOBILE. SO I WANTED TO START WITH SEALIAC DISEASE, AS I MENTIONED, THEY DO A GOOGLE SEARCH, COME IN AND LAND ON A PAGE ABOUT A PARTICULAR HEALTH SITUATION. SO WE UNDERSTOOD THAT THESE NEED TO BE USEABLE LANDING PAGES TO ALLOW PEOPLE TO NAVIGATE THROUGHOUT THE WEB SITE FROM HERE INSTEAD OF SAY FROM THE HOME PAGE WHICH MIGHT THINK WOULD START WITH THE HOME PAGE, PEOPLE CAN SYRUP, PEOPLE CAN BROWSE BUT NO, THAT ISN'T THE WAY PEOPLE ARE USING THE SITES AND A LOT OF SITES, WE KEPT THAT IN MIND. YOU SEE HERE WE CAN, IF YOU WOULD LIKE TO SHARE VIA SOCIAL MEDIA, CAN YOU E-MAIL PAGES, FACEBOOK, TWITTER HOWEVER YOU WOULD LIKE TO SHARE. SO SAY FOR EXAMPLE, MY SISTER WAS JUST DIAGNOSED WITH CELIC DISEASE, I GO TO GOOGLE AND UPCOMES HOME GENETIC REFERENCE AND I'M INTRIGUED BECAUSE MY SISTER HAS THIS GENETIC DISEASE AND IT CELIAC DOES HAVE GENETIC COMPONENTS ALTHOUGH IT'S 1 OF THESE COMPLEX DISEASES I WAS TALKING B. SO EACH OF THE CONDITION PAGES IS STRUCTURED IN THE SAME WAY STARTING WITH THE DESCRIPTION OF THE DISEASE. AND THE DESCRIPTION IS GOING TO INCLUDE SOME OF THESE AIDICATIONAL IMAGES THAT I MENTIONED. NOW IS A DISEASE WHERE PEOPLE ARE OVERLY SENSITIVE TO THE PROTEIN FOUND IN WHEAT AND OTHER GRAINS AND IT CAN CAUSE ALL MANNER OF HEALTH ISSUES INCLUDING SAY, ANEMIA AND IF YOU CLICK HERE YOU CAN SEE A PIBLGHTURE OF WHAT HA LOOKS LIKE OR FOR EXAMPLE SOME PEOPLE END UP WITH OSTEOPOROSIS, AGAIN ANOTHER IMAGE, CAN YOU GET A VISUAL OF WHAT SOME OF THESE FEATURES LOOK LIKE. SO WHAT ELSE MIGHT I WANT TO KNOW? YOU KNOW I SCROLL DOWN AND I SEE THIS OTHER INFORMATION THAT MIGHT INTEREST ME AS A FAMILY MEMBER WITH A DISEASE SO FOR EXAMPLE, THE FREQUENCY OF THE DISEASE SEEMS COMMON WITH THE PREVALENCE IS ABOUT 1 IN A HUNDRED BUT WAIT, WHAT IF I'M NOT A SCIENTIFIC PERSON. I DON'T KNOW WHAT THE WORD PREVALENCE MEANS, BUT THERE'S JUST IN TIME INFORMATION OVER HERE IN RELATED INFORMATION, THIS IS FROM HELP ME UNDERSTAND GENETICS, I CAN LEARN MORE ABOUT A GENETIC CONDITION THAT'S SPECIFIC SO I CAN LEARN ABOUT THE INCIDENCE AND PREVALENCE AND WHAT THOSE TERMS MEAN AND AGAIN THIS IS IF I'M INTERESTED AND I WANT TO LEARN MORE. I CAN LEARN ABOUT THE GENETIC CHANGES THAT OUR ASSOCIATED WITH DISEASE, THERE'S A COUPLE OF IMMUNE SYSTEM GENES THAT ARE KNOWN, HAVE VARIANCE THAT INCREASE THE RISK OF THIS DISEASE. MAYBE I'M REALLY INTERESTED IN THE INHERITANCE BECAUSE AGAIN MY SISTER IS THERE WITH ME, MY FAMILY, AND WE CAN FIND OUT HERE THAT DOES IN FACT CLUSTER IN THE FAMILIES BUT HAS AN UNKNOWN PATTERN OF INHERITANCE. THESE RARE CONDITION VS CLEAR PATTERNS OF INHERITANCE AND GENETIC CANS A LITTLE LESS COLEDUCATIONAL WITH SOMETHING MORE COMPLEX AS THIS DISEASE,. >> DIAGNOSIS AND MANAGEMENT OF THIS DISEASE, HERE I CAN FOLLOW LINKS TO MAJOR CENTERS THAT PROVIDE DIAGNOSIS AND TREATMENT I CAN LEARN MORE--I CAN LEARN OTHER NAMES FOR THIS AND THIS BY THE WAY NOT ONLY HELPS THE SEARCH SO PEOPLE WHO ARE SEARCHING FOR A PARTICULAR SITUATION BUT CAN ORIENT THE READER TO KNOW THAT THEY'RE IN THE RIGHT PLACE EVEN IF LET'S SAY THEIR DOCTOR CALLED INNER FRIEND CALLED IN, SOMETHING DIFFERENT THAN WHAT GENETIC REFERENCES IS CALLING IT. --FROM ELSEWHERE AT NIH, AND NIDDK, HAS LOTS OF SEVERAL FACT SHEETS RELATED TO THIS. MAYBE MY SISTER COULD REALLY USE SUPPORT OR FIND OTHER PEOPLE WHO ALSO HAVE THE DISEASE TO TALK TO. SO SUPPORT IN ADVOCACY RESOURCES ARE VERY IMPORTANT FOR THAT. PERHAPS SHE'S INTERESTED IN A CLINICAL TRIAL OR MY FAMILY IS INTERESTED IN PARTICIPATE NOTHING CLINICAL RESEARCH SO THIS WILL TAKE YOU TO A SEARCH THAT HAS ALREADY BEEN DONE ON CLINICALTRIALS.GOV AND YOU CAN FIND OUT RIGHT AWAY WHAT RECENT STUDIES ARE GOING ON ABOUT THIS PARTICULAR DISEASE. LET AND SIMILARLY, SOME PATIENTS REALLY WANT TO DIG DEEP AND THEY WANT TO GO INTO THE LITERATURE AND THEY WANT TO KNOW WHAT THE LATEST THINGS ARE THAT ARE HAPPENING. AND IN THAT CASE, WE AUTHOR A PUBMED SEARCH, AGAIN THAT'S ALREADY BEEN DONE SO CAN YOU SEE WHAT THE LATEST RESEARCH THAT HAS BEEN PUBLISHED IS SAYING ON THIS PARTICULAR DISEASE. SO I'M GOING TO SCROLL BACK UP HERE BECAUSE MAYBE MY INTEREST IS PIQUED AND I WANT TO LEARN MORE ABOUT THESE GENES THAT ARE RELATED TO CELIAC DISEASE, SO MAYBE HLA-DQB 1, WHICH IS PART OF THE IMMUNE SYSTEM OF GENES AND PART OF THE HLA COMPLEX, YOU WILL GET BASIC HIGH LEVEL INFORMATION ABOUT WHAT THE NORMAL FUNCTION OF THIS GENE IS. WHAT DOES THIS GENE DO IN THE BODY? AND THEN WHAT ARE THE HEALTH CONDITIONS RELATED TO GANCHS IN THIS GENE. SO HERE'S CELIAC DISEASE AND YOU CAN READ ABOUT THE SPECIFIC VARIANCE TO INCREASE THE RISK AND DISORDER AND THEN HEY, MAYBE I'M INTERESTED WOW, THERE'S ALSO NARCOLEPSY HAS BEEN ASSOCIATED WITH CHANGES IN THIS GENE AND TYPE 1 DIABETES, WHAT I WANT TO SHOW YOU HERE IS THAT YOU CAN DIG DOWN AS DEEP AS YOU WANT TO GO. SOME PEOPLE THEY'RE GOING TO START ON A HEALTH CONDITION PAGE AND THEY'LL BE DONE. OTHER PEOPLE, THEY'RE GOING TO WANT THESE OTHER RESOURCES AND WE WILL PROVIDE THAT FOR THEM AS WELL. SO USER FEEDBACK AROUND THE REDESIGN. SINCE THEN WE ASKED PEOPLE AND 89% SAID THEY FOUND THE NEW LOOK AND FEEL TO BE HELPFUL AND THEY SAY THINGS LIKE IT LOOKED MORE MODERN, EASIER TO NAVIGATE. MORE PROFESSIONAL AND SOMEBODY, I PROMISE THIS ISN'T MY MOM,--[LAUGHTER] --SAID YOU KNOW WE'RE BRINGING GHR, AND IT'S MORE REPUTABLE AND RELIABLE AND WE LIKED HEARING THIS. SOME OF THEM HAD SPECIFIC COMPLAINTS I HAD SEVERAL GENETICS COUNSELORS SAY, I WOULD LIKE TO PRINT IT AND NOW IT TAKES SO MANY MORE PAGES SO NOW WE INTRODUCED PDF. NOW CAN YOU PRINT A TEXT ONLY PDF THAT'S JUST A FEW PAGES SO WE'RE CONTINUING TO LISTEN EVEN THOUGH THE REDESIGN IS OVER TO YOUR USERS NEED AND WANT. SO WHAT'S COMING UP IN THE FUTURE. WE PLAN TO KEEP ADDING MORE CONTENT, MORE NEW HEALTH CONDITIONS, MORE NEW GENES AND CONTINUE TO UPDATE THE EXISTING CONTENT BECAUSE THIS IS REALLY THE HEART OF WHAT WE DO. WE INTEND TO ADD MORE OF THESE EDUCATIONAL IMAGES THROUGHOUT THE WEB SITE AND ALSO TO KEEP REFINING THIS SITE BY DESIGN AND FUNCTIONALITY. WE WANT TO IMPROVE EXPERIENCE FOR MOBILIZERS, REDUCE THE PAGE LOAD TIME AND ADDING THESE WONDERFUL GRAPHICS AND STUFF MADE IT LONGER TO LOAD THE PAGES AND WORKING HARD ON REDUCING THAT, AND THEN ADDING PDFs PER FOR PRINTABLES TO OTHER PARTS OF THE WEB SITE AS WE KNOW PEOPLE ARE REALLY ARE INTERESTED IN IT. WE WILL BEGIN TRACKING MORE SPECIFIC METRICS SO ON PAGE METRICS HOW MANY PEOPLE ARE OPENING UP THE EXPANDABLE SECTION? HOW MANY ARE CLICKING ON THE PDFs? WE WANT TO FIND OUT WHAT OUR USERS ARE ARE DOING AND HOW THEY'RE INTERACTING WITH THE WEB SITE SO WE CAN DO EVEN BETTER AND THEN LASTLY WE'RE PLANNING A FORMAL USABILITY ANALYSIS WHERE WE ACTUALLY SIT DOWN WITH ACTUAL SAMPLE USERS AND GIVE THEM TASKS, WATCH THEM, TRY TO COMPLETE THESE TASKS ON GENETICS HOME REFERENCE AND FIND OUT WHERE THEY HAVE TROUBLE SO WE CAN IMPROVE USE ABILITY WITH THE WEB SITE. SO HERE'S OUR TEAM. WE HAVE 4 PEOPLE WHO CREATE THE CONTENT INCLUDING ME FOR THE WEB SITE. ONE SENIOR ADVISOR AND 1 TECHNICAL WIZARD WHO DOES ALL OF OUR WEB DEVELOPMENT SO GENETICS HOME REFERENCE WE AREN'T GLAD TO BE PART OF THE [INDISCERNIBLE] OF HIGH QUALITY NLM CONSUMER HEALTH RESOURCES. AND I HOPE I SUBMIT TO YOU THAT WE'RE ALWAYS LOOKING FOR WAYS TO IMPROVE AND TO BETTER SERVE OUR USERS AND WITH THAT I WELCOME YOUR QUESTIONS OR COMMENTS. [ APPLAUSE ] >> HI, I'M SANDRA MARTIN I'M A LIBRARIAN AND I AM SO GLAD TO SEE THAT YOU CHANGED THE INTERFACE BECAUSE IT'S--I WILL TELL YOU--I WON'T TELL YOU HOW OLD I AM BUT WHEN YOU SAY GENETICS HOME REFERENCE ISSUES I GET THAT OLD IMAGE IN MY HEAD OF WHAT IT USED TO LOOK LIKE SO HAVING THIS IS REALLY, REALLY GREAT. AND AM MORE APT TO REFER THIS TO SOMEONE ELSE BUT I HAVE'S QUESTION, HAVE YOU A VARIETY OF PRODUCTS HOW CAN YOU TELL WHICH REALLY [INDISCERNIBLE] TO TRY THAT, WHAT LEVEL DO YOU GO FOR WHEN YOU TRY TO DEVELOP THE SUMMARY. >> RIGHT, WE FIND READING LEVELS TO BE A DIFFICULT METRIC TO ASSESS MOSTLY BECAUSE WE USE SOME OF THESE REALLY BIG MEDICAL TERMS AND WE ALSO DEFINE THEM IN THE TEXT. BUT BECAUSE THEY'RE THERE, IT BLOWS THE READING LEVEL OUT OF THE WATER SO I FEEL LIKE IT'S DIFFICULT TO GET AN ACCURATE REPRESENTITATION OF WHAT THE LEVEL IS, THAT SAID, WE ALWAYS KEEP IN MIND THAT OUR USER WE'RE WRITING FOR IS SOMEBODY WITHOUT A MUSICAL BACKGROUND. SO IT'S SOMEBODY WHO MIGHT NOT BE TOO CLEAROT DNA OR A GENE EVEN IS, SO STARTING FROM THERE, HOW CAN WE PROVIDE CONTEXTURAL INFORMATION ABOUT THIS. HOW DO WE WRITE THIS ON A LEVEL BUT MEASURE READING LEVEL KEEPING IT SIMPLE. >> REALLY EXCELLENT, OUTSTANDING PRESENTATION STEPHANIE, JUST OUTSTANDING. YOU KNOW THERE ARE 2 QUESTIONS THAT HUMAN BEINGS OBSESS ABOUT ALL THE TIME, NUMBER 1 IS HOW DID I GET HERE AND NUMBER 2 IS WHO AM I? THERE IS A NEW BOOK OUT CALLED THE 10 MOST IMPORTANT OBJECTS IN EVOLUTION THAT I RECOMMEND, IT'S A REALLY GOOD BOOK. THE SECOND QUESTION WHO AM I? THERE ARE 2 RESOURCES. ONE IS THE WORDS OF WILLIAM SHAKES SPEAR, THE SECOND IS THE GENETIC HOME WORK [LAUGHTER] BECAUSE IT ANSWERS THE QUESTIONS OF WHO AM I IN GREAT DETAIL AND GREAT AND INCREASING DETAIL. AND AS STEPHANIE POINTED OUT THERE ARE 1.7MILLION PEOPLE WHO [INDISCERNIBLE]. THAT'S AN INCREDIBLE NUMBER. AND MANY WAYS IT IS A MICROCOMP OF THE NATIONAL LIBRARY OF MEDICINE. IT HAS TRUSTED THEM. IT HAS MULTIPLE SOURCES OF INPUT. IT HAS A VAST RANGE OF INFORMATION. IT'S INTEGRATED WITH OTHER NLM RESOURCES AND IT'S DESIGNED FOR BOTH PUBLIC AND SCIENTISTS. SO DR.BRENNER I ENCOURAGE YOU TO THINK ABOUT AS A MODEL FOR THE KIND OF ACTIVITIES THAT ARE SO USEFUL IN THE NLM, A NEED IS PERCEIVED AND IT IS IT IS ADDRESSED AND THE WAY IT IS ADDRESSED AND WONDERFUL AS IT CONTINUES TO CERTAINLY--CERTAINLY VOLVE AND I WANT TO CONGRATULATE PEOPLE WHO THOUGHT OF IT AND MAINTAIN IT. >> SO THE OTHER POINT OF VIEW, WE HAD THIS DISCUSSION AT LUNCH ABOUT, YOU KNOW WHAT SHOULD BE THE LITMUS TEST FOR NLM SIN THETDICALLY CREATING THINGS AS OPPOSE TO BEING A SYSTEMS INTEGRATOR AND THIS IS SOMETHING CLEARLY NLM IS EDITORIALLY CREATING. AND OUR OFFTHE TOP OF THE HEAD LITMUS TEST IS SOMETHING THAT IT SHOULD BE SOMETHING THAT NLM COULD DO OR NLM HAS THE UNIQUE ADVANTAGE WHICH IS CLEARLY OF IT HERE BUT THE QUESTION IS SINCE YOU HAVE PARTNERS AND THEY DO THE SAME THING, THEY ACTUALLY CREATE LAY LANGUAGE COB TENT FOR THE MANY DECEASES OF THEIR MANY ALLIANCE PARTNERS, WHAT WOULD BE--WHEN WOULD YOU DECIDE TO STOP DOING GENETIC HOME REFERENCE BECAUSE YOU'RE BASICALLY DUPLICATING THE OTHER SYNTHETIC EDITORIAL AND DIGESTING SYNTHESIS EFFORTS OF OTHER ORGANIZATIONS THAT ARE TRUSTED HIGH QUALITY. BECAUSE THAT'S CERTAINLY AN ERA WHERE DUPLICATION OF RESOURCES AN ATHEMA. >> BUT SHE ADDRESSED THAT IN HER SLIDE WHERE SHE SAYS THAT THESE OTHER SOURCES ARE HARD TO GET TO AND NOT UNDERSTAND BY-- >> THAT WAS IN 2002 AND 3. >> YEAH. >> SO I THINK THAT THERE ARE ACTUALLY A NUMBER OF ILLUSTRATIONS IF I CAN COME UP WITH THEM WHERE NLM WAS ENGAGED IN SOMETHING AND REASSESSED THE SITUATION. SO I THINK WE WOULD HAVE TO REASSESS THAT SITUATION. THIS IS A GREAT PRODUCT. THIS DIVISION IS HAPPY TO USE, THIS DIVISION WAS A GREAT IDEA, THEY'RE COLLECTING INPUT AND SO FORTH. THE ISSUE ABOUT WHETHER IT COULD BE BUILT EVEN MORE COLLABORATIVELY THAN IT IS BUT CLEARLY THEY'RE OBVIOUSLY LEVERAGING OTHER GROUPS. I THINK IT'S A VERY GOOD 1 AND IT'S ON THE AGENDA JUST SO THAT YOU COULD ASK YOUR QUESTION. >> SO QUESTION IN CONTEXT, IT'S TERRIFIC, XREAMLY WELL KNOWN AND HAS THE MARK OF NLM'S HIGH QUALITY, ATTENTION TO DETAIL AND MOST IMPORTANTLY MAINTAINING THINGS FOR 150 YEARS IF YOU NEED TO MAINTAIN THEM FOR A 150 YEARS IT'S ONLY ASKING THE QUESTION THAT DO YOU HAVE A MECHANISM FOR SENSING ENVIRONMENTAL CHANGES THAT IS NO LONGER REALLY NECESSARY TO BE DOING THIS EDITORIAL SYNTHESIS. >> [INDISCERNIBLE] >> I DEFINITELY THINK IT'S AN INDEX OF BEING USEFUL AND LOOKING AT IT THIS WAY, YOU KNOW I'M A FAN OF THE SITE OBVIOUSLY. BUT IT'S GOOD TO LOOK AT THESE THINGS AND THEN THE OTHER ISSUE IS, IN SOME SENSE, WHAT'S THE PROGNOSIS FOR THE OTHER PLACES. THE YOU KNOW WHAT IS THE LICKLY HOOD THAT WILL COME BACK IN THIS 5 YEARS? HOW FREQUENTLY DO THEY GET AROUND TO UPDATING THE MATERIAL? WHAT ARE ALL OF THOSE OTHER ISSUES AND I THINK THAT THOSE HAVE TO PLAY INTO IF YOU CONSIDER THIS TO BE, YOU KNOW WE LOOK AT THE USE OF IT AND THEN TO GO BACK TO WHAT ARE THE STRONG SUITS WHEN YOU SAY, WHERE IS YOUR STRONG SUIT, THAT IS A STRONG SUIT, OF NLM, WE START TO USE SOMETHING, IT GETS ME HANGING, IT GETS HANDLED OVERTIME AND IT GETS UPDATED AND WE MIGRATE IT TO THE NEXT PLATFORM AND WHEREVER MAY BE NOT QUITE AS ADEQUATELY AS WE COULD IN THIS CASE, BUT YOU KNOW SO I THINK THESE ARE QUESTIONS AND THEY'RE QUESTIONS FOR THE PLANNING. >> FUNDAMENTALLY IT DOESN'T SOUND LIKE A SCALE SO YOU HAVE 4 OR 5 PEOPLE AND HOW MUCH OF THE GENOME DOY UNDERSTAND IN TERMS OF CONSEQUENCES IF THAT GOES THROUGH THE ROOF AS UNDERSTANDING OF THE GENOME CREATES 30,000 THINGS THAT NEED TO BE INTERPRETED AND WRITTEN ABOUT, NOW YOU JUST HAVE A SCALING PROBLEM WHERE YOU DON'T HAVE ENOUGH RESOURCES TO CONTINUE TO DO THE EDITORIAL SYNTHESIS. THE QUESTION IS 10 YEARS FROM NOW OR 50 YEARS. >> ALSO TO RIP ON THIS POINT, YOU COULD LOOK AT MEDLINE PLUS AS SORT OF IN THE SAME CATEGORY OF TRYING TO CREATE INFORMATION FOR THE CONSUMER AND OUR COMPETITORS FOR THAT. AND MEDLINE--I MEAN WEBMD AND OTHER KINDS OF SOURCES, SO, THE GENERIC QUESTION, I GUESS REALLY IS WHAT--WHEN 1 DOES THIS, I KNOW I'M COMING TO YOU--AND THEN THERE ARE OTHER DATABASES LIKE PIPELINE AND OTHER THINGS THAT MAY COME ABOUT HISTORICALLY AND WE DECIDE WHAT KIND OF METRICS WE USE AND THE CRITERIA TO DO THIS. >> YOU KNOW 1 HUGE POINT IN FAVOR OF NLM TO DO THIS STUFF. AND I REALIZE YOU HAVE TO TAKE INTO ACCOUNT WHETHER YOU CAN SCALE IS THAT WE ARE TO BE THE UNBIASED VOICE. MAYO CLINIC HAS AN AGENDA, YES IT'S TO HELP BUT IT'S TO PUSH FORWARD MAYO CLINIC, NLM, SAME THING, SO WE ARE THE UNBIASED SOURCE AND THERE IS A LOT TO BE SAID FOR THAT. >> SO IT'S GOING TO BE NEED TO BE SCALED VERY QUICKLY, I AM AWARE THAT THERE'S A SCREENING PROGRAM IN NEWYORK WE WILL BE SEQUENCING USING NECKS GENERATED SEQUENCING IN OCTOBER FOR FIBROSIS, WE'LL DOJING [INDISCERNIBLE], WE'LL DO MUSCULAR ATROPHY, THIS IS AN INCREDIBLE RESOURCE OF PARENTS WHO HAVE KIDS WITH INHERITED DISEASES BUT THERE'S GOING TO BE A LOT MORE INFORMATION VERY QUICKLY THAT'S GOING TO NEED TO GO ON THIS. >> SO WHAT I WAS LOOKING AT, IT'S A GREAT SITE, I WAS SAYING TO MYSELF, YOU HAVE TO GO THERE TO GET IT AND IT'S NOT PORTABLE AND I THINK THE REAL VALUE IS, SO HOW CAN I EPITHELIAL GREAT THAT IN SUMMATION THAT YOU HAVE AND PUT IT IN OTHER PLACES. BECAUSE AND I USE THE NATIONAL LIBRARY OF MEDICINE AND I'M SAYING TO MYSELF, YEAH BUT IF I COULD GRAB THAT DATA AND PUT IT OVER HERE, I CAN CARRY IT TO A WHOLE GROUP OF OTHER PEOPLE WHEN MAY NOT KNOW THAT THEY NEED THAT INFORMATION BUT I CAN INTRODUCE THEM TO THAT. SO PART OF WHAT'S MISSING HERE IS THE PORTABILITY, THERE'S GOT TO BE A MECHANISM WHERE YOU CAN MOVE THAT INFORMATION AROUND. >> WE DO HAVE I SUSPECT APPLICATION FOR MEDLINE PLUS IS 1. AND CONNECT, I DON'T KNOW IF HAVE YOU ENOUGH--YOU SERVE UP THE WHOLE SITE WITH AN API OR NOT. >> NOT RIGHT NOW. >> SO THAT IS A GOOD POINT. WE DO HAVE THE ABILITY FOR A LOT OF OUR SOURCES TO BE INTEGRATED. >> [INDISCERNIBLE]. >> [INDISCERNIBLE] IF WE GIVE IT ALL THE WAY AND SOMEBODY ELSE TAKES IT AND JUST BUILDS IT AND USES IT FOR LITTLER PURPOSES WE COMPLETELY LOST CONTROL OF IT AND MAYBE [INDISCERNIBLE] IS OUT OF IT-- >> IT IS. >> [LAUGHTER] >> BUT 2002, 2005 WAS CERTAINLY A THOUGHT THAT WAS IN OUR HEAD, THIS IS A LIBRARY RESOURCE AND ONCE THE LIBRARY LETS IT GO, IS IT GONE? >> I JUST WANT TO SAY SOMETHING BECAUSE I'M RESPONSIBLE [INDISCERNIBLE] AND I THINK THE QUESTIONS ARE ALL GOOD BUT WE DID ANALYZE THIS A COUPLE YEARS AGO IN TERMS OF THE INTRUSION OF THE FREQUENCY OF THE EFFECT AND BY MOST MEASURES WE'RE PRETTY CLOSE TO COVERING THE 1S THAT EVERYONE SAYS YOU HAVE TO LOOK AT. I THINK THERE'S NOT NEARLY [INDISCERNIBLE]. --I CAN'T REMEMBER THE NUMBER. >> [INDISCERNIBLE]. >> NO IT'S MORE--THERE'S 20,000 MUTATIONS ON NCBIs [INDISCERNIBLE] BUT THEY REALLY GET VANISHING IN TERMS VERY QUICKLY SO THIS IS AN IMPORTANT ISSUE BUT I THINK YOU HAVE TO PAY ATTENTION TO THE FREQUENCY AND THE HOW MUCH IS KNOWN IN REAL LIFE ABOUT THESE DISEASES. SO I KIND OF THINK FOR THE MASS OF INTEREST, FOR A WHILE, ANYWAY WE WILL BE ABLE TO KEEP UP, WE WILL HAVE TO SEE AND LIFE IS ALWAYS A SURPRISE. >> THESE ARE ALL VERY GOOD QUESTIONS AND AS I SAY, THIS IS A GREAT RESOURCE AND IT WAS A GOOD WAY TO TEE UP THIS PARTICULAR QUESTION. >> [INDISCERNIBLE] >> I'LL JUST SAY, YOU KNOW WE HAD SOME ISSUES IN D. A. MOST RECENTLY ON USATODAY ON POSTING PUBLIC DATA AND I LOVE IT WHEN WE CAN CONTROL THE CONTENT AND THE DISPLAY WHAT WE FOUND OUT THAT WAS MAINTAINING THE STAFFING INTERNALLY TO MANAGE IN PARTICULAR WHEN GOVERNMENT HAS ALL THOSE THE WAY GOOGLE DOES OR OTHER PEOPLE DO. I MEAN I TRY TO EXPLAIN SECTION 508 TO A REPORTER AND SHE BASICALLY THOUGHT HIGH CRIMES AND MISDEMEANORS, YOU JUST DON'T WANT TO BE TRANSPARENT NO WE USE COLORS AND RED, GREEN, YELLOW REPORTS ANYMORE. AND THEN, YOU KNOW THE NEXT SOLUTION TO THAT IN GOVERNMENT WAS ADDITIONAL SERVICES TEAM FROM THE WHITEHOUSE, ARE YOU ALL FAMILIAR WITH THAT? AND THEN A G. O. REPORT CAME OUT THAT SHAME ON YOU, YOU WERE VIOLATING ALL THESE 4000 [INDISCERNIBLE]. SO I'M OF THE OPINION NOW THAT IF WE CAN GENERATE, YOU KNOW THE CONTENT, BUT GIVE IT AWAY, OTHER PEOPLE CAN DISPLAY IT A LOT MORE FLEXIBILITY AND ALACRITY THAN WE'LL EVER BE ABLE TO DO DESPITE OUR BEST RETENTION AND RESOURCES. I DON'T KNOW WHETHER YOU ARE THERE YET WITH THIS STUFF BUT WE CERTAINLY ARE THERE WITH HEALTH PERFORMANCE DATA. >> I THINK THERE'S ATTENTION BETWEEN THE STATE OF THE GOVERNMENT WORKS AND THE STATE THAT OTHER ORGANIZATIONS WORK IN AND YOU SEE HA IN A LOT OF--ERIC IS ANOTHER DATABASE OUT OF DEPARTMENT OF EDUCATION AND DAT TAKEN--THEY BASES HAVE BEEN AROUND FOREVER AND [INDISCERNIBLE] PUBMED OBVIOUSLY. SO I DON'T THINK IT'S AN EITHER/OR, I REALLY THINK IT'S [INDISCERNIBLE] >> YEAH IT IS-- >> IT'S A POSSIBILITY FOR DIFFERENT-- >> YEAH IT IS IN MY OPINION THE ISSUE OF WHAT ARE THE CRITERIA AT LEAST THAT'S THE WAY I VIEW IT. >> AND YOU KNOW FOR AN EXPERT USER LIKE I DON'T GO TO THE WHRR CHANNEL OR UNDERGROUND, I BASICALLY USE NWS PRODUCT, NOAH PRODUCT BECAUSE YOU YOU KNOW IT'S JUST--THERE'S LESS EYE CANDY, FEWER ADS AND THEY HAVE GOOD AND TALENTED PEOPLE WITH THE DISPLAY, BUT IT DEFINITELY IS A BIT MORE TECHNICAL. THAT'S A CLASSIC EXAMPLE. >> LAST WORD. SO 1 OF THE THINGS I WOULD LIKE TO ENCOURAGE THE STRATEGIC PLANNING GROUP AND PROCESS TO DO IS TO TAKE ON THIS QUESTION. THERE IS CLEARLY, THE GENETICS HOME REFERENCE IS AN EXTREMELY WELL KNOWN ENTRY TO NLM FROM NIH THAT LEADS TO OTHER TYPES AND THERE ARE QUESTIONS, SCALABILITY, PRIORITIZATION, THE BALANCING OF LIBRARY SCIENCE COLLECTION MANAGEMENT, WITH SCIENCE COMMUNICATION AND I WAS VERY IMPRESSED WITH THE SLIDES THAT DESCRIBE THE PARTNERSHIP WITH THIS, SO I THINK WE NEED TO THINK FROM THIS AS THE PERSPECTIVE OF THE DIRECTIVE FOR THE GROUP TO THINK ABOUT IS HOW DO WE LOOK FOR PRODUCTS THAT ALLOW US TO BUILD NEWER PRODUCTS DOWN THE LINE OF SERVICE PROTOTYPE AS WE CAN MAYBE RAPIDLY SCALE UP THIS INFORMATION NEEDED, WE WANTED TO LOOK AT THE GENERAL, IF YOU WILL CLASS OF INFORMATION RESOURCES AND SEE IT CAN BE APPLIED ELSEWHERE. SO I THINK THIS IS AN EXCELLENT TIME AND THANK GOODNESS WE HAVE AN EXCELLENT PRODUCT TO START THE DISCUSSION WITH, WE'RE NOT TRYING TO SOLVE A PROBLEM WITH THIS, WE'RE TRYING TO FOSTER A DISCUSSION. >> THANK YOU FOR A GREAT PRESENTATION. [ APPLAUSE ] >> THANK YOU. >> OKAY, WE'LL MOVE ON NOW TO ANOTHER INTERESTING TOPIC. ETHICAL APPROACHES TO RESEARCH USE OF CLINICAL RECORDS AND DATA AND WE HAVE A GUEST PRESENTER KATHLEEN BRELSFORD, Ph.D. SENIOR SOCIAL SCIENTIST FOR IMPERICAL BIOETHICS AT DUKE UNIVERSITY, SHE'S INVOLVED IN THE DESIRE, CONTACT ANALYSIS OF SEVERAL STUDIES ON RESEARCH RECRUITMENT, INFORMED CONSENT AND CONFIDENTIALITY PROTECTIONS AND LARGE SCALE DENATIONAL LIBRARY OF MEDICINIC RESEARCH. DR.BRELSFORD AND ON A GRANT FUNDED BY THE NLM, ETHICAL APPROACHES OF RESEARCH USE TO CLEANICAL READ CORDS AND DATA AND THE PI IS LAURA COULD NOT BE WITH US TODAY, SO DR.BRELSFORD HAS BEEN INVOLVE WIDE EVERY ARE THE PATHWAY GIVES OF THE PROJECT AND AND ALL ALL THE FOCUS GROUPS SO WELCOME AND WE ARE INTERESTED IN WHAT YOU HAVE TO SAY. >> IT'S IMPORTANT TO KNOW THAT THIS IS NOT MY PROGEC, THIS IS LAURA BEIS, KOW'S PROJECT AND SHE REGRETS NONAPOPTOTIC THE BEING ABLE TO BE HERE TODAY. WE ARE DEEP IN THE RESULTS OF QUALITATIVE ANALYSIS BUT TODAY IS A SLIVER BUT STAY TUNED BECAUSE WHAT I HOPE IS WE'RE SHOWING YOU TODAY INTERESTING STUFF AND EULWANT TO KNOW MORE JUST TO GIVE YOU BACKGROUND, YOU DON'T NEED TO DO IT NOW BUT TAB 4 IN YOUR MAROON BOOKS PROVIDES YOU WITH MORE INDEPTH ANALYSIS OR DESCRIPTION OF OUR SPECIFIC GAIN BUT FOR TODAY WE'LL TALK ABOUT FINDINGS FROM OUR SEMISTRUCTURED INTERVIEWS AND WE WERE REALLY INTERESTED IN ASSESSING PATIENT WILLINGNESS TO SHARE THEIR CLINICAL DATA FOR RESEARCH. SO WE HAVE MASSIVE AMOUNTS OF ELECTRONIC HEALTH RECORD DATA, RESEARCHERS ARE EAGER TO GET IT, HOW CAN WE PROVIDE THAT INFORMATION TO RESEARCHERS IN A WAY THAT IS ETHICAL AND APPEARS TO BE FAIR TO PATIENTS. SO 1 THEN WE WERE ASKING ABOUT IS THE ACCEPTABILITY OF DIFFERENT APPROACHES TO NOTIFY PEOPLE THAT THIS IS HAPPENING OR TO ASK THEIR PERMISSION. AND THEN WE ALSO CONDUCTED A LOT OF FOCUS GROUPS. WE WERE INTERESTED IN PATIENTS REACTIONS TO RESEARCHER CONTACT BASED ON INFORMATION IN A PERSON'S ELECTRONIC HEALTH RECORD. SO, REALIZE EXAMPLE THAT HELPED KIND OF BRING THIS UP IS A RESEARCH OR DUKE CONTACTED LAURA AND SAID, I'VE BEEN GOING THROUGH ELECTRONIC HEALTH RECORDS, I FOUND PATIENTS WHO I'M PRETTY SURE HAVE TYPE 2 DIABETES BUT NO DIAGNOSIS, WHAT DO I DO? OKAY? SO WHAT ARE MY ETHICAL OBLIGATIONS BUT WE CREATED SOME OF THESE SAME TYPES OF SCENARIOS IN HAD FOCUS GROUPS WHERE WE ASK PATIENTS WHAT ARE YOUR EXPECTATIONS. IF IF YOU WERE THE PATIENTS HERE WHAT DO YOU THINK RESEARCHER OBLIGATIONS ARE? AND THEN FINALLY, THIS SPRING WE'RE GOING BACK TO THE FOIA RESEARCH SITES TO CONVENIENCE A SERIES OF ALL DAY EVENTS CALLED DELIBERATATIVE DIALOGUE EVENTS WHERE WE PRESENT BACK TO COMMUNITIES OUR MAJOR FINDING SO THEY CAN HAVE AN INFORMED PLACE AT THE TABLE. SO THAT'S TO COME. IMPORTANT TO STRESS HERE IS THAT AN OVERARCHING GOAL OF OURS TO COLLECT POLICY RELEVANT DATA AND THE FIRST THING WE WANT TO MAKE SURE WE'RE GETTING FROM THE RPs THAT YOU TALK ABOUT WANTING TO HEAR FROM IS INFORMED OPINION. SO, YOU CAN GO OUT RIGHT NOW AND ASK PEOPLE WHAT THEY THINK ABOUT ELECTRONIC HEALTH RECORDS AND THEY WILL PROBABLY TELL YOU. BUT THEN WE NEED TO ASK, DO THEY KNOW WHAT AN ELECTRONIC HEALTH RECORD IS, DO THEY KNOW ABOUT CERTAIN THINGS LIKE WHAT IRBs ARE OR WHAT RESEARCHERS CAN AND CAN'T DO WITH THOSE PIECES OF INFORMATION. SO IN ALL OF OUR INSTRUMENTS AND OUR METHODOLOGY WE HAVE 3 DIFFERENT STEPS. THE FIRST IS TO PROVIDE THE RELEVANT INFORMATION, EDUCATION WE THINK PEOPLE NEED, THE BEAR BONES TO HAVE AN INFORMED OPINION. AND THEN WE ASSESS THAT UNDERSTANDING AND FINALLY WE ASK THEM TO REFLECT ON THIS ISSUE IN A LARGER--WITH A LARGER LENS SO THAT WHAT THEY'RE GIVING US HOPEFULLY IS INFORMED. SO WHERE DID WE GO, WE HAVE BEEN CONDUCTING RESEARCH IN 4 DIFFERENT COUNTIES IN THE SOUTHEASTERN UNITED STATES AND 1 CRITICISM IS YOU MIGHT SAY WELL YOU'RE ONLY IN THE SOUTHEAST, PEOPLE FEEL DIFFERENTLY ABOUT THESE ISSUES AND I WOULD AGREE, THIS IS PROBABLY THE CASE, WHEN YOU LOOK AT THE MAGNITUDE OF THE CALLITATIVE DATA WE'RE COLLECTING THAT WOULD JUST BE IMPOSSIBLE. WHAT I DO THINK WE'RE GETTING HERE, FROM PLACES PARTICULARLY MINGA WEST VIRGINIA AND MISSISSIPPI IS THE KIND OF RURAL POPULATION THAT IS OFTEN OVERLOOKED IN A LOT OF THESE STUDIES. WE DO STUDIES WHERE WE GO TO SAN FRANCISCO AND DALLAS AND CHICAGO BUT WE'RE ALL GETTING URBAN, SEMIURBAN AREAS TO GIVE YOU A FLAVOR OF THESE POPULATIONS AND QUIT MAN, MISSISSIPPI WE COULDN'T STAY IN THE COUNTY. THERE IS NO PLACE TO STAY IN THE COUNTY. SO THE NEAREST ACCOMMODATIONS ARE 45 MINUTES AWAY. THERE'S 1 GROCERY STORE IN THIS THE ENTIRE COUNTY. THE FRESH PRODUCE IS--THERE'S SOMETHING LEFT TO BE DESIRED. THIS IS AN INCREDIBLY IMPOVERISHED COUNTY, LOW EDUCATION LEVELS, HIGHERATINGS OF ILLITERACY. MINGA, WEST VIRGINIA IS IN THE HEART OF COLE COUNTRY. THEY'RE EXPERIENCING A LOT OF ECONOMIC PAIN FROM CHANGES IN THE ECONOMY. THIS IS ALSO LOWER EDUCATION, PREDOMINANTLY WHITE AND WHAT I WANT YOU TO FOCUS ON HERE IS WHILE WE'RE LACKING SOME KINDS OF DIVERSITY, THESE 4 AREAS REPRESENT SOME PRETTY DIFFERENT ACCESS TO HEALTHCARE ORGANIZATIONS. SO IN QUIT MAN THERE IS 1 CLINIC IN THIS THE ENTIRE COUNTY. IN MINGO THERE'S ABOUT 3 CLINICS AND WHEN YOU GET TO TOWNS IN NARC NARCS, YOU HAVE MORE OPTIONS AND THESE INFORM THE WAY PEOPLE UNDERSTAND RESEARCH AND WHAT THEY THINK IS MEANS AND WHAT IT MEANS FOR THEM. SO AGAIN TO GET AN EXAMPLE OF SOME OF OUR STUDY LOCATIONS, I SPENT A LOT OF TIME IN COTTON FIELDS. I MADE THE FRONT PAGE OF THE MINGO WEST VIRGINIA NEWSPAPER, THEY DON'T THROW COTTON AT YOU THEY THROWICAL CUM POWDER, PROBABLY EQUALLY ENGAGING BUT WE WERE PARTICIPATING AND IT WAS REALLY IMPORTANT AND THE REASON I PUT THIS PATIENTS IN THE CLINIC UP HERE WAS RECRUITMENT WAS AN INCREDIBLE CHALLENGE MISSISSIPPI AND WEST VIRGINIA. SO EARLY EARLY TALKING ABOUT THE TMI AND THE IMPORTANCE OF RECRUITMENT AND ENROLLMENT OF DIVERSE AREAS OF THE UNITED STATES, TRUST WAS AN INCREDIBLE ISSUE IN THESE PLACES WE HAD TO SPEND A LOT OF TIME ON THE GROUND, WE HAD A LOT OF COMMUNITY PARTNERS AND EVEN STILL THERE WAS TREMENDOUS DISTRUST. AND WE OVERTAME THAT HURDLE, YOU GO KEEP IN MIND WE'RE ASKING FOR PEOPLE'S OPINIONS. THAT'S ALL. WE WEREN'T COLLECTING BLOOD SAMPLES, NOTHING IN TERMS OF TAKING THEIR DATA JUST ASKING FOR OPINIONS AND IT TOOK A LONG TIME TO BUILD THAT TRUST. OKAY AND THIS SHOWS YOU ALL THE THINGS WE DID IN HAD THESE COMMUNITIES TO TRY TO ENGAGE. WE SPENT A LOT OF TIME AT SOFTBALL GAMES, COMMUNITY EVENTS, MY COLLEAGUE POSSING WITH THE KALE QUEEN OF MINGO COUNTY WEST WEST. ALL RIGHT SO TODAY I'M GOING TO TALK ABOUT WHAT WE FOUND IN OUR INTERVIEWS AND TO TALK TO YOU WE TALKED TO ORIENT YOU WE TALKED TO 24 PEOPLE ACROSS THESE 4 SITES AND THE INTERVIEWS LASTED BETWEEN 1 AND 2 HOURS DEPENDINGS HOW TALKA TELEVISION THEY WERE BUT HOW MUCH THEY UNDERSTOOD WHAT WE WERE TALKING ABOUT AND WHEN PEOPLE CAME IN WE START WIDE A SHORT QUESTIONNAIRE AND THEN WE SHOWED THISEM AN EDUCATIONAL VIDEO. SEVEN ININUTES AND IT DESCRIBED TO THEM IN SISTER BASIC DETAIL WHAT IS AN ELECTRONIC HEALTH RECORD. HOW MIGHT THEY BE BENEFICIAL TO PATIENTS TO PROVIDERS AND THEN TO RESEARCHERS AND THE REST OF THE VIDEO TALKS ABOUT HOW RESEARCHERS MIGHT BENEFIT FROM ACCESS TO PARTS OF ELECTRONIC HEALTH RECORDS AND THE PRIVACY PROTECTION THAT ARE OR ARE NOT IN PLACE. FOR RESEARCHERS. LET SO ONCE WE DID THAT AND WE TALKED WITH PEOPLE TO MAKE SURE THEY HAD A BASIC UNDERSTANDING OF WHAT WAS GOING ON, WE THEN TURNED TO THE INTERVIEW AND WE--THERE WERE 2 MAIN PARTS OF THIS. SO THE FIRST PART WAS THE ACCEPTABLE OF APPROACHES. AND WE INTRODUCED TO PEOPLE 3 GENERAL WAYS THAT PATIENTS COULD BE INFORMED ABOUT ACCESS TO ELECTRONIC HEALTH RECORDS FOR RESEARCH PURPOSES. THE FIRST WAS GENERAL NOTIFICATIONS. SO WE'RE GOING TO TELL YOU THIS IS OUR POLICY, WE'RE NOT GOING TO ASK YOU. THE SECOND WAS BROAD PERMISSION, WE'RE GO TO SEEK YOUR PERMISSION THROUGH A YES ORIE NO, BUT WE'RE NOT GOING TO GIVE YOU A LOT OF CHOICES AND THE THIRD WAS CATEGORICAL CONSENT, WE WILL GIVE YOU GRANULAR FINER GRAIN CHOICES ABOUT WHAT YOU CAN SHARE AND WITH WHOM. NOW, IF WE WERE TO ASK PEOPLE, WHICH OF THESE DO YOU THINK WOULD BE THE MOST PREFERRED APPROACH, HANDS UP, WHO THINKS GENERAL NOTIFICATION, RPs, REAL PEOPLE, THEY WANT GENERAL NOTIFICATIONS. LET 1, 2? OKAY, YOU'RE BRAVE. EXCELLENT. HOW ABOUT BROAD PERMISSION? GENERAL POPULATION, THEY WILL SAY BROAD PERMISSION IS MY FAVORITE: COUPLE MORE, 6. JUST TO MAKE SURE YOU'RE ALL VOTING HOW MANY OF YOU SAY CATEGORICAL CONSENT? OKAY, KIND OF THE REST OF YOU. ALL RIGHT, SO HOLD ON TO THAT BECAUSE WE'RE GOING TO SHOW YOU WHAT PEOPLE ACTUALLY THINK HERE. SO THE FIRST APPROACH WE ALSO START WITH A DESCRIPTION THIS CASE, GENERAL NOTEIFICATION, IMAGINE THE FIRST TIME YOU GO INTO A HEALTHCARE ORGANIZATION, IT TELLS YOU ALL THE WAYS THEY USE YOUR HEALTH INFORMATION AND SOMEWHERE IN THAT WERE A FEW SENTENCES TELLING THAT THE INFORMATION SHARES INFORMATION WITH QUALIFIED RESEARCHERS CONDUCTINGA,A PROVED STUDIES SO GENERAL NOTIFICATION THE ORGANIZATION IS NOT ASKING FOR PERMISSION BUT INFORMING YOU THIS IS THE POLICY. ONCE WE EXPLAIN THIS TO PEOPLE, WE SAY EARLY IN MORNING, EVAPORATE HAD MY COFFEE TO MAKE SURE I HAVE EXPLAINEDDED THIS WELL, CAN YOU REPEAT IT BACK TO ME IN YOUR OWN WORDS AND THIS IS THIS WAS IMPORTANT TO MAKE SURE PEOPLE UNDERSTOOD WHAT THIS OPROACH WAS AND WAS NOT SAYING AND WE HAD TO SOMETIMES SPEND A LOT OF TIME TO REORIENT PEOPLE: ONCE WE FELT PEOPLE WERE ONBOARD, PLEASE CONSIDER FROM THE PERSPECTIVE OF THE PATIENT, HEALTH CARE PROVIDER AND HEALTH CARE ORGANIZATION AND RESEARCHER ALL THE POSSIBLE ADVANTAGES AND DISADVANTAGES THAT COME FROM USING THIS APPROACH. WE DIDN'T COACH PEOPLE. PEOPLE FREE RADICALS LISTED ON THEIR OWN, AS YOU SEE THEY DID A GOOD JOB AND WHEN PEOPLE HAD BEEN EXHAUSTED THEIR ADVANTAGES AND DISADVANTAGES THEN WE ASKEM THIS ABOUT ACCEPTABLE. OKAY? WE WOULD SAY, IF APPROXIMATE YOUR HEALTHCARE ORGANIZATION WERE TO USE THIS APPROACH, WOULD IT BE OKAY WITH YOU. AND WE REALLY STRESSED ACCEPTABILITY, I WOULD PREFER TO BE IN TAHITI BUT I'M HERE AND THAT'S OKAY. SO WE WANT ACCEPTABLE. HERE'S WHAT THEY SAID. WHEN WE TALK ABOUT GENERAL NOTIFICATION THEY IDENTIFY 4 MAJOR ADVANTAGES OF THIS APPROACH. BY AND LARGE THE NUMBER 1 PEOPLE SAID IT'S THIS KIND OF APPROACH ENCOURAGES RESEARCH, DEFINITELY GOOD FOR THE PEOPLE WHO ARE DOING THE RESEARCH BECAUSE THEY HAVE ACCESS TO OTHER INFORMATION THAT THEY MIGHT NOT HAVE ACCESS TO IF THEY HAD TO ASK PERMISSION, PEOPLE RECOGNIZE THIS. THEY TALK ABOUT RAISING AWARENESS SO PEOPLE WOULD SAY LOOK, YOU'RE NOT DOING THIS BEHIND MY BACK, IT'S INFORMING THISEM AND SEEING THIS IS AN ADVANTAGE OF GENERAL NOTIFICATION. PEOPLE LIKE THE SIMPLICITY OF THIS APPROACH. IN OUR POPULATION, SIMPLICITY IS BEST, HERE'S WHAT WE'RE DOING, IT'S IN THERE, THEY WERE NOTIFIED AND PEOPLE TALK ABOUT MINIMIZING BURDEN. SOME PEOPLE SAID I DON'T LIKE TOO MANY CHOICES, I DON'T WANT TO BE THINKING ABOUT THIS. SO THOSE ARE THE ADVABTAGES, SO WHAT ARE THE DISADVANTAGES, FIRST AND FOREMOST PEOPLE SAID I DON'T APPRECIATE BEING TOLD ABOUT THIS. I WOULD WOULD PREFER TO BE ASKED ABOUT THIS. I SEE THAL AS A DIS ADVAUNTSAGE AND AT A TALK ABOUT BI MATT HOLT ASKING ME OR FORCING ME TO MAKE ANOTHER CHOICE WHICH IS DO I ACCEPT THIS POLICY OR DO I GO ELSEWHERE FOR CARE. AND THIS SEEMS BUDDENSOME AND UNFAIR. I SHOULDN'T HAVE TO CHOOSE BETWEEN GETTING MOO I DOCTOR OR GETTING MY MEDICAL RECORDS EXPOSED. AND PEOPLE IN MISSISSIPPI, THEY HAD OTHER CONCERNS. THEY SAID LOOK, YOU MIGHT THEORETICALLY BE ABLE TO GO ELSEWHERE FOR CARE, BUT IN REALITY YOU CAN'T. THERE NO TRANSPORTATION OR MONEY, THERE'S 1 CLINIC. BY THE TIME PEOPLE COME HERE IS IT IS BECAUSE THEY NEED HELP, THEY DON'T HAVE OPTIONS. LACK OF AWARENESS, AGAIN BY THE TIME YOU TO GET TO CLINIC IF IT YOU ARE SIT SICK AND HURTING WHAT THE LIKELIHOOD YOU WERE GOING TO READ THROUGH ALL OF THAT CRAP IN THAT PAPERWORK? RIGHT? SO THIS CONCERN THAT PEOPLE WILL NOT BE AWARE OF THE PAPERWORK. ALL IS YOU'RE SAYING ABOUT RESEARCH AND THAT MAKES ME LEARY, HOW FAR DOES IT GO? HOW CAREFUL ARE YOU? HOW MUCH OF MY RECORD, IT'S NOT CONSIDER CLEAR. IT WOULD BRING UP MORE QUESTIONS. SO PEOPLE HAVE ADVANTAGES AND THEY RECOGNIZE DISADVANTAGES IN TERMS OF ACCEPTABLE, LOW OR HIGH, IF YOU ASK PEOPLE IF YOUR HEALTHCARE ORGANIZATION USE THIS APPROACH IN THE MIDDLE? OKAY, THERE WE GO. 3-QUARTERS SAID YES, FINE, IT'S FINE. AND I THINK THIS HIGHLIGHTS THE DIFFERENCE OF ASKING ABOUT ACCEPTABILITY OR PREFERENCE, RIGHT? WHEN PEOPLE HAVE THE CHANCE TO THINK ABOUT IT, THEY SAY,--AND MOST PEOPLE DID SAY THIS, THEY SAID - IT'S NOT MY FAVORITE BUT IT WOULD BE OKAY. AND BY AND LARGE IT SAID LOOK, IT'S FACILITATING RESEARCH, IT'S GOOD ENOUGH FOR ME, BUT THE PEOPLE WHO SAID IT'S UNACCEPTABLE SAID I NEED TO MAKE A CHOICE. SO THE NEXT CHOICE WE GAVE NEM IS BROAD PERMISSION, IT STARTS OUT WITH THE SAME AS THE PREVIOUS CHEPT ANY BROAD PERMISSION WE GET A YES OR NO CHOICE. AND IT RESENTED A YES OR NO BOX AND WE TOOK THEM THROUGH THE PROCESS OF ADVANTAGES, DISADVANTAGES AND PROVIDED THEM 2 ALTERNATIVES. ONE WAS AN OPTICAL IMAGES IN MODAND HE WILL 1 WAS AN OPTICAL IMAGES OUT MODEL AND WE HAVE DATA ON THOSE, TOO, I'M NOT PRESENTING THOSE TODAY BUT THERE ARE SIGNIFICANT DIFFERENCES IN HOW PEOPLE FEEL ABOUT OPTICAL IMAGES IN AND OPT OUT AS OPPOSE TO A YES/NO CHOICE. BUT IF YOU LOOK OVERARCHING 3 AS AN APPROACH, PEOPLE LIKE THAT YOU HAVE AN ACTIVE CHOICE. IF FEELS LIKE HAVE YOU AGENCY HERE. YOU HAVE TO MAKE A CHOICE, IT MAY NOT BE INTELLIGENT BUT AT LEAST IT'S YOUR CHOICE AND AGAIN NOW BECAUSE I HAVE A CHOICE, I DON'T HAVE TO MAKE THIS ALTERNATIVE CHOICE ABOUT WHETHER I NEED TO GO FIND A NEW DOCTOR AND PEOPLE LIKE NOTIFICATIONS SAID THIS FEELS SIMPLE IT'S A BASIC YES OR NO. IN TERMS OF DISADVANTAGES PEOPLE AGAIN SAID I NEED MORE EXPLANATION, I FEEL LIKE THERE'S NOT ENOUGH EXPLANATION TO MAKE AN INFORMED DECISION BUT THEY ALSO SAID NOW HAVE YOU LESS DATA. MOMENT YOU ASK PEOPLE, PEOPLE WILL SAY NO AND THAT CAUSES YOU TO LOSE DAS DATA AND THOSE ARE AVAILABLE. ACCEPTABLE, HIGH OR LOW. PEOPLE ARE OKAY? WITH THIS? VERY HIGH. 96 MCS PSYCHOFIZZISTS OF PEOPLE SAID BROAD PERMISSION WOULD BE ACCEPTABLE IF MY HEALTHCARE ORGANIZATION WERE TO USE THIS APPROACH. AMONG THE FEW AND RESPONSES WERE ACROSS THE MAP AND MOSTLY SAID WE'RE LOSING DAT A. AND THEN THE FINAL APPROACH WE ASK PEOPLE ABOUT WAS CATEGOR CATH CONSENT. SO WE DESCRIBE THIS ABOUT MORE CHOICES ABOUT WHETHER YOUR INFORMATION COULD BE SHARED FOR RESEARCH. AND THE PEOPLE SAID THIS ENHANCES TRANSPARENCY, THE MORE YOU'RE GIVING ME, THE MORE I'M IN THE LOOP AND THE MORE I TRUST THIS PROCESS. THEY ALSO TALK ABOUT THIS IS NOT AN ALL OR NONE NOW. THERE MAY BE SOMETHING I DON'T WANT TO SHEAR OR MAYBE I DON'T WANT TO SHARE WITH COMMERCIAL ENTITIES BUT NOW THAT I HAVE THE CHOICE TO OPTICAL IMAGES OUT, I AM WILLING TO GIVE YOU MORE INFORMATION. ASK THEN FINALLY PEOPLE SAID, YOU KNOW THIS IS AN OPPORTUNITY TO VOTE WITH YOUR EHR AND I LIKE THIS QUOTE. IT GIVES PEOPLE THE OPTION TO QUOTE FOR THE TYPE OF RESEARCH THEY THINK IS VALUABLE AND DEVOTE AGAINST THE TYPES OF RESEARCH THEY THINK MIGHTIC PORK BARRELL, AND SAYING I WANT MY MONEY USED THIS WAY AND NOT THAT WAY. IT'S A POLITICAL CHOICE. SO THOSE WERE THE ADVANTAGES. HERE ARE THE DISADVANTAGES. BY AND LARGE REAL PEOPLE SAID, WE'RE REAL PEOPLE, WE DON'T KNOW. WE CAN'T MAKE THESE DECISIONS, PEOPLE REFERENCE, I DON'T HAVE A Ph.D., I'M NOT A RESEARCHER, I DIDN'T DEVOTE MY LIFE TO THIS, I DON'T HAVE A MEDICAL DEGREE, HOW IN APPROXIMATE THE WORLD CAN I MAKE THESE DECISIONS. OKAY? SO PEOPLE AREN'T EDUCATED SHE WAS PASSIONATE WHAT INFORMATION DO YOU WANT TO SHARE UNLESS THEY GO TO MED SCHOOL, HOW ARE THEY GOING TO KNOW. THIS IS TOTALLY WRONG. OKAY? THEN THE OTHER CONCERN IS THIS FEELS CONFUSING OR BURDENSOME. THIS IS TOO MUCH OF CHOICE. ONE PERSON SAID, YES MEANS YES, AND NO MEANS NO, IF I TELL YOU YOU CAN USE MY RESEARCH, THAT MEANS I'M WILLING TO SHARE IT. THIS IS TOO MUCH PAPERWORK. SO ACCEPTABLE WHILE HIGH STILL IS NOT AS HIGH AS IT IS FOR BROAD PERMISSION. 89% SAID YEAH, I WOULD BEING OKAY IF MY HEALTHCARE ORGANIZATION USED THIS APPROACH. SO WHEN YOU LOOK AT THE 3 APPROACHES TOGETHER BROAD PERMISSION IS BEST BUT ALL OF THESE APPROACHES DO FAIRLY WELL, RIGHT? WHEN YOU ASK ABOUT ACCEPTABLE. SO THEN WE ASK, ALL THE ADVANTAGES AND DISADVANTAGES WE DISCUSS WHEN WOULD BE THE MOST APPROPRIATE WAY TO LET THEM KNOW THEIR EHRs MIGHT BE USED FOR RESEARCH. WHICH DO YOU THINK THE WINNER WAS? WELL, I ASKED YOU ALREADY. WELL FEW OF YOU WERE RIGHT. BROAD PERMISSION WAS THE MOST. I WOULD THINK GENERAL NOTIFICATION WOULD BE PREFERABLE, BUT I LIVE IN A BUBBLELE AS DO YOU APPARENTLY BUT CATEGORICAL SOMETIMES COMES OUT AT THE MOST PREFERRED APPROACH. SO PARSING OUT WHY OUR RESULTS ARE DIFFERENT. WE NEED TO DO THAT BUT IT'S WORTH NOTES THAT ALL OF THESE APPROACHES ARE FAIRLY ACCEPTABLE. OKAY WHEN YOU LOOK BY LOCATION, YOU SLEEP APNEA AND OBESITYY BROAD PERMISSION IS THE MOST APPROPRIATE IN 3 OF THE 4 SITES, AND NO 1 THINGS GENERAL NOTIFICATION IS THE WAY TO GO. SO AFTER WE ASK ABOUT THESE APPROACHES WE ASK THEM ABOUT THE WILLINGNESS TO SHARE THE CLINICAL DATA RESEARCH. SO WE SAID IMAGINE YOU GO INTO YOUR HEALTHCARE ORGANIZATION, YOU GET A SHEET WITH A YES OR NO CHOICE. ABOUT YOUR WILLINGNESS TO SHARE NONIDENTIFIABLE DATA. WHAT WOULD YOU SAY? BY AND LARGE PEOPLE SAID YES, 93% SAID IT'S FINE, THIS IS NOT E DENTIFIABLE, I DON'T HAVE AN ISSUE WITH THIS, AMONG PEOPLE WHO HAD PROBLEMS, THEY CITED PRIVACY CONCERNS. SO THEN WE SAY IMAGINE YOU GET ANOTHER QUESTION, THIS TIME TO INDICATE YOUR WILLINGNESS TO SHARE IDENTIFIABLE INFORMATION IN YOUR EHR. WHAT WOULD YOU SAY TO THAT AND THERE WE SEE A MORE EQUAL SPLIT. OKAY? FREIVE% OF PEOPLE SAID I'M UNWILLING TO SHARE THIS INFORMATION AND THEY HAD A LOT OF REASONS BUT PRIMARILY IT WAS PEOPLE QUESTION THE NEED, THEY DIDN'T REALLY UNDERSTAND WHY IDENTIFIABLE INFORMATION WOULD BE REQUIRED AND THEY ALSO TALKED ABOUT REAL CONCERNS ABOUT HACKING IN IT, PRIVACY, AND 1 WOMAN SAID IT'S TOO DANGEROUS OUT THERE, I DON'T WANT ANYBODY SALING MY IDENTITY, I CAN RUIN MY OWN CREDIT. I DON'T NEED YOU TO DO IT. THEY TALKED ABOUT TRUSTING THE PROCESS. THEY FEEL LIKE THERE'S A GOVERNANCE PROCESS IN PLACE, I HAVE FAITH IN THE PROCESS. OR THEY SAID I DON'T HAVE SENSITIVE INFORMATION, GO AHEAD AND SHARE IT. BUT MOST OF THE TIME THEY WANT TO HELP PEOPLE AND SO IF THEY COULD HELP SOMEBODY THEY WOULDED DO IT. SO THEN WE ASKED IN THIS THE CATEGORICAL APPROACH TO SHARE IDENTIFIABLE DATA WITH DIFFERENT KINDS OF RESEARCHERS AND AFTER THIS WE ACTUALLY GOT MUCH MORE DETAILED SO FOR EACH OF THESE 5 KINDS OF RESEARCHERS WE HAD 11 KINDS OF HEALTH INFORMATION AND WE ASK PEOPLE TO TELL US ESSENTIA WILY WELL, I WOULD SHARE ALL OF MY INFORMATION, WITH THE GOVERNMENT I DON'T WANT THEM KNOWING MY MENTAL HEALTH INFORMATION FOR EXAMPLE. SO STRIKING HERE IS PERHAPS NOT UNSURPRISE SUGGEST THAT PEOPLE SHARE IDENTIFY INFORMATION WITH RESEARCHERS IN THEIR HEALTHCARE ORGANIZATION OR OWN PHYSICIAN IF HE OR SHE WERE CONDUCTING THE RESEARCH. THOSE NUMBERS DIP DOWN. INTERESTING WITH THE GOVERNMENT, 62% OF PEOPLE SAID YES, I WOULD SHARE IT HOWEVER, THERE'S A CAVEAT THERE, IN MINGO IN MISSISSIPPI PARTICULAR, I WOULD SHARE IT BECAUSE THEY ALREADY HAVE IT THERE WAS A BRIEF THAT I COULD SAY NO BUT WHAT'S THE POINT BECAUSE THE GOVERNMENT GETS WHAT THE GOVERNMENT WANTS SO IT'S A VERY PERVASIVE SENSE OF DISTRUST AND PARTICULARLY WITH THE WEST VIRGINIA WITH THE GOVERNMENT. SO YOU WOULD BE SURPRISED I'M NOT A MILLENNIAL, I KNOW I LOOK LIKE 1 YOU THERE WAS A SIGNIFICANT DIFFERENCE IN TERMS OF AGE DO YOU THINK OLDER OR YOUNGER WERE MORE WILLING TO SHARE? >> WHO SAID YOUNGER? WHO SAYS OLDER? ACTUALLY THE OLDER WERE MUCH MORE WILLING TO SHARE. AND WE LOOKEDDA THE THIS BASED ON 60-65, WHEN YOU LOOK AT QUALITATIVE DATA, THEY SAY I'M ON MY WAY OUT THAT NOT THAT ANYONE OVER 60 IS OLD BUT THEY BASICALLY SAID, I'M RETIRED, I CAN'T LOSE MY JOB, I'M ON MEDICARE, I DON'T HAVE THE SAME KINDS OF CONCERNS, IF I'M GOING TO HAVE A GENETIC CONDITION, IT'S PROBABLY, YOU KNOW ALREADY WOULD HAVE HAPPENED I DON'T MIND SO MUCH. - IT WAS THE YOUNGER PEOPLE WHO WERE CAUTIOUS ABOUT SHARING INFORMATION. OKAY, SO I SEE I AM AT TIME. I WILL LEAVE THIS SLIDE UP. SOME OF THE THINGS THAT ERIC TALKED ABOUT THIS MORNING ARE RELEVANT. GETTING TO THESE COMMUNITIES WAS CHALLENGING. WE HAD LOW RATES OF LITERACY AND WE SENT OUT LETTERS AND A LOT OF PEOPLE SAID A NEIGHBOR HAD TO COME OVER AND READ THE LET TORE THEM AND YOU CAN IMAGINE TERMS OF RETURNING A RESULT. HOWEVER YOU DO THAT, THERE'S A LIKELIHOOD IN SOME COMMUNITIES THAT OTHER PEOPLE ARE GOING TO HAVE TO BE COMMUNICATING THIS INFORMATION TO PEOPLE. THE MEANINGFUL RESEARCH, I THINK FROM A CONSENT--FROM A CONCEPT PERSPECTIVE IS IMPORTANT TO CONSIDER HERE. PEOPLE IN MISSISSIPPI IN PARTICULAR, DEFINED RESEARCH AS SOMETHING A GOOD DOCTOR DOES IN HIS OR HER CLINICAL CARE OF A PATIENT, RIGHT? SO WE GO THROUGH THIS, WE THANK THESE PEOPLE AND WE THINK THEY UNDERSTOOD WHAT WE'RE TALKING ABOUT AND THEY SAY I'M TOTALLY IN SUPPORT OF RESEARCH AND I HAD TERRIBLE DOCTORS AND THEY WENT OUT AND LOOKED AT MY HEALTH AND MY CONDITION AND DID HIS RESEARCH AND THAT'S THE PERSON WHO HELPED ME AND SO YOU CAN IMAGINE SOMETHING LIKE THE PMI WHERE WE'RE COLLECTING A LOT OF DATA AND IF PEOPLE HAVE THIS ASSUMPTION THAT BY GIVING OVER ALL THE INFORMATION ABOUT MYSELF, I'M GOING TO BE BENEFITING BECAUSE I THINK RESEARCH IS SOMETHING TAYLORED TO ME. YOU RUN THE RISK OF FURTHER ERODING TRUST IN THESE COMMUNITIES. THAT ALSO GETS INTO SHARING AND IN A COMMUNITY WHERE THERE'S 1 ORGANIZATION, SHARING TAKES ON A NEW MEANING SO WHEN WE'RE TRYING TO EXPLAIN WHAT IT WOULD MEAN IT WOULD SAY, I GUESS IF THE PEOPLE IN LOGAN COUNTY HAD IT, I GUESS IT'S OKAY, WELL WHAT IF THE PEOPLE IN LOSANGELES HAVE IT? WELL THEY NEVER HAVE MY DATA SO THRESHOLD A DIFFERENT KEENED OF UNDERSTANDING OF WHAT IT MEANS TO BE GETTING CARE IN KIND OF YOUR OWN CONTEXT AND ENVIRONMENT. SO THANK YOU. SORRY I WENT OVER BY A FEW MINUTES. THANKS. KD--SALLY APPLAUDS THAT WAS GREAT. IN SMALLER COMMUNITIES I HAVE THE PROBLEM OF SOC PRESSURE WITH A COMMUNITY AND I HAVE EXPERIENCED THIS WITH AN INDIAN HEALTH SERVICE, NIH WAS ASSURED THAT IT WAS PEOPLE THAT IT WAS DEIDENTIFIED DATA THERE WAS PRESSURE THAT IN THE SMALL COMMUNITY PEOPLE WOULD BE ABLE TO RECOGNIZE THAT OUTLIER AND THAT GUIDE. YOU KNOW AND THEN IN A SMALL GSA FEDERAL OFFICE BUILDING, WE HAD PRESSURE FROM 2 PEOPLE WHO WERE--FELT THREATENED AND THEY ENDED UP GETTING THE UNIONS TOGETHER AND PREVENTING US FROM DOING THE STUDY AND WE HAD TO GO TO A LARGER BUILDING. SO I THINK THERE'S THIS QUESTION OF--AND YOU HAVE THE SMALLER COMMUNITIES THERE, YOU HAVE MINGO'S THERE, SO DID YOU FIND--OR CAN YOU TEASE PAY PART THE ROLE OF SOCIAL PRESSURE IN THIS. >> I THINK WE WILL BE ABLE TO TO SOME EXTENT. PEOPLE TALKED ABOUT THAT THAT IF I WERE TO PARTICIPATE IN RESEARCH, I AM THE ONLY PERSON THAT HAS 1 LIMB, RIGHT? BUT IN GENERALIE THINK PEOPLE WERE IN SMALLER ANALYSIS, PEOPLE WERE MUCH MORE CONCERNED ABOUT THE GOVERNMENT HAVING INFORMATION THAN PEOPLE IN THEIR OWN COMMUNITIES HAVING IT: AND IN BOTH OF THOSE COMMUNITIES PEOPLE SAID LOOK WE'RE THE WORST EVERYTHING, THEY KNOW WE KNOW THAT AND SO PEOPLE TAKE AND TAKE AND TAKE FROM US BUT THEY NEVER GIVE BACK. WE NEVER SEE THE BEEN FITS AND I THINK THANKFULLY THIS RESEARCH WAS DIFFERENT BECAUSE PEOPLE AT THE END THEY WOULD SAY I DON'T KNOW WHAT I HAVE TO OFFER YOU I DON'T HAVE A DEGREE AND BY THE END THEY SAN FRANCISCO WOULD SAY I FEEL VALUED AND MOST OF THE TIME ROOTS TAKEN THAT WAY AND TAKE AND NOT GIVE AND SO FOR THE PMI AGAIN MAKING SURE PEOPLE FEEL LIKE THIS PROCESS AND GETTING INFORMATION BACK WILL BE IMPORTANT TO NOT ERODE TRUST FURTHER. >> DID YOU ANALYZE THE DAT RELATIVE TO EDUCATION LEVEL? >> DID WE ANALYZE IT RELATIVE TO EDUCATION? YES, WE DIDN'T FIND DIFFERENCES IN TERMS OF ACCEPTABLE OR PREFERENCE BY EDUCATION. WHAT I THINK--THE WAY EDUCATION COMES OUT AND DON'T QUOTE ME ON THAT BECAUSE WE HAVEN'T DONE AN EXTENSIVE QUANTITATIVE EXPRESSION YET BUT FROM BEING ON THE GROUND--EDUCATION COMES OUT AND THAT PEOPLE FEEL LOWER EDUCATED PEOPLE FEEL DISEMPOWERED. THEY DON'T FEEL THEY'RE EQUIPPED TO MAKE THESE DECISIONS. SO CATEGORICAL WE SAW A TREND WITH LESS ACCEPTABLE SO PEOPLE WITH LESS EDUCATION WOULD SAY I DON'T THINK IT'S ACCEPTABLE IN OUR COMMUNITY. THEY WOULD POINT TO THE ELDERLY POPULATION, THEY WOULD SAY PEOPLE CANNOT READ--SO MAYBE THEY WEREN'T TALKING ABOUT THEIR OWN EDUCATION LEVEL BUT THEY TALKED ABOUT THE EDUCATION IN THEIR COMMUNITY AS TO WHETHER SOMETHING MAY OR MAY NOT BE A GOOD APPROACH. >> WELL IF IT'S SHORT-- >> OKAY. >> I THOUGHT THIS WAS TREMENDOUS BECAUSE YOU HEAR SO MUCH ON THIS ON RESEARCH AND NOBODY WANTS TO SHARE, EVERYBODY'S AFRAID, ET CETERA AND I WONDER IF YOU HAVE A PAPER OR SOMETHING WE COULD TAKE HOME WITH US TO LOOK AT-- >> I'M SURE WE'RE HAPPY TO SHARE THE SLIDES. >> OKAY. >> AND WE'RE HAPPY THROUGH VALERIE TO COMMUNICATE. >> THE OTHER QUESTION IS CONTEXT CHANGES. SO IF THEREYA A SHARK ATTACK IN A BOSTON OR SOMETHING, EVERYBODY'S AFRAID TO GO SWIMMING, WE EACH THOUGH THE RISK IS VERY, VERY LOW, AND THERE'S A LOT OF FEAR MONGERING AND HOW THEY WOULD RESPOND OR HOW PEOPLE WOULD RESPOND. YOU KNOW WE WERE TALKING ABOUT RESEARCH WHICH I WOULD ASSUME IS IRB APPROVED NOT COMMERCIAL. I MEAN, SO, THOSE DISTINCTIONS MAYBE HARD TO EXPLAIN ABOUT WHAT YOU'RE TALKING ABOUT. >> IN CONTEXT, I WILL SAY CONTEXT DOES MATTER. PEOPLE TALK ABOUT YOUR OWN BREECH, YOU KNOW IF THE GOVERNMENT CAN GET HACKED HOW ON EARTH ARE YOU GOING TO PROTECT OUR DAT AND THAT HAD HAPPENED RECENTLY AND I THINK WHEN SOMETHING'S ON PEOPLE'S MINDS IT ABSOLUTELY EFFECTS HOW THEY'RE VIEWING THINGS. >> [INDISCERNIBLE], WOO HAVE STUDIED 1 OF OUR RESEARCHERS AT MY PLACE STUDYING BEHAVIORIAL HEALTH AND WILLINGNESS TO SHARE THE HEALTH ISSUES OR DRUG APUCE ISSUES SO I THINK, YOU KNOW CONTEXT IS DEFINITELY IN THOSE SITUATIONS WHERE IN A PUBLIC HEALTH SITUATION MAY BE LESS--THANK YOU. >> WE HAVE ANOTHER PRESENTATIONOT SAME TOPIC. >> APPLAUSE. >> WE GET TO EXPLORE FURTHER ETHICAL ISSUES WITH THE SECOND DISCUSSION CALLED YAWBD CONSENT: PATIENT PREFERENCES FOR GOVERNANCE USE OF CLINICAL DATA AND SAMPLES AND OUR PRESENTER IS DR.SANDRA SLEEP APNEA AND OBESITY-JIN LEE AT CENTER FOR INNOVATION AND DPLOABAL HEALTH SCHOOL OF MEDICINE STAND STANFORD. SHE TRAINED AT MEDICAL POLICY AT UC BERKRY IN SAN FRANCISCO. [INDISCERNIBLE]. >> IT'S A JOINT PROGRAM. >> HAS MORE THAN 2 DECADES OF TEEPING MEDICALLANTHROPOLOGY, SO HER RESEARCH IS ONLY PROCESS, HUMAN VALUES AND CULTURAL SCIENCE AND TECHNOLOGY AND BY O MEDICINE WITH A PHAGOR FOCUS ON HOW TO USE EMERGING GENOMIC TECHNOLOGIES, AND CLINICAL MEDICINE AND HOW THAT'S INFORMED BY AND INFLUENCED BY CONCEPTIONS OF DIFFERENCES AND RACIAL STRATIFICATION. TODAY SHE WILL PRESENT HER RESEARCH TO THE BORED ON NLM FUNDED RO-1 GRANT ENTITLED USE ON CLINICAL DATA AND SAMPLELES FOR PATIENT USE. >> I'M DELIGHTED TO BE HERE. THANK YOU FOR THE INVITATION AND I'M REALLY EXCITED TO HEAR KATHLEEN AND LAURA'S FINDINGS BECAUSE I THINK THERE'S QUITE A BIT OF SYNERGY DESPITE THE DIFFERENT CONTEXT IN WHICH WE DID OUR STUDY WHAT I WILL DO IS TELL YOU A BIT ABOUT QUALITATIVE DATA WE HAVE IN THE THICK OF DATA ANALYSIS AS WELL AND SO THIS IS AN ONGOING PROJECT BUT I WANTED TO GIVE YOU A SENSE OF SOME OF OUR FRAMEWORKS AND SOME OF THE DATA THAT WE'VE--WE'VE ANALYZED. SO THIS DOVETAILS NICELY IN IF THE SENSE THAT OUR STUDY IS TRYING TO UNDERSTAND HOW THE PUBLIC ENGAGES WITH WHAT HAS BEEN DEEMED A NEW MODEL OF DOING SCIENCE AND YOU WILL RECOGNIZE THIS CARTOON AS PART OF SOME OF THE MATERIALS THAT WERE GENERATED IN RELATIONSHIP TO THE PMI BUT THIS IDEA THAT WE'RE GOING TO SCALE UP, RIGHT, IF WE HAVE DIFFERENT SOURCES OF DATA FROM THE BODY, FROM OUR EHR, FROM OUR LIFESTYLE, FROM ALL OF THE DIFFERENT APPS THAT WE HAVE AND WE ARE GOING TO CONVERGE THIS IN A WAY THAT'S GOING TO TELL US SOMETHING MEANINGFUL ABOUT HEALTH IN A VERY TARGETED FASHION. THAT THE IS THE HOPE. AND IT'S INTERESTING HOW THIS PROMISE IS BEING RELATED TO THE PUBLIC AND THIS IS JUST AN EXAMPLE OF THE WAY IN WHICH PERHAPS THE PUBLIC IS THINKING ABOUT PRECISION MEDICINE. THIS ARTICLE FROM THE NEWYORK TIMES DESCRIBES SOME OF THE STORY AROUND PRECISION MEDICINE BUT IF EMPHASIZES THIS IDEA OF PATIENTS AS PARTNERS AND THAT'S A THEME THAT HAS BEEN REITERATED THROUGHOUT THIS INITIATIVE. CERTAINLY IT REFLECTS A TREND IN TERMS OF HOW PATIENTS HAVE NO LONGER BEEN CAST AS HUMAN SUBJECTS BUT REALLY ARE ACTIVE PARTICIPANTS. AND THE QUESTION IS: HOW DO YOU ACTUALLY EXERCISE THAT? HOW DO YOU BRING PATIENTS INTO THE DISCUSSION? HOW DO THEY BEING CALM PARTIC PANTEDS IN A WAY THAT IS MEANINGFUL TO THEM? AND SO OUR STUDY IS REALLY TRYING TO THINK ABOUT SOME OF THESE ETHICAL AND SOCIAL CHALLENGES THAT AREUSHERRED IN BY THIS NEW MODEL OF SCIENCE. IT ATTENDS TO THE QUESTIONS ABOUT HOW TO HONOR PRINCIPLES OF RESPECT AND AUTONOMY FOR PARTICIPANTS. WHAT ARE THE RESPONSIBILITIES AND OBLIGATIONSLICATIONS OF STAKEHOLDERS THAT ARE COMING INTO VIEW WHEN YOU HAVE IT TYPE OF LONG-TERM RELATIONSHIP. HOW DOES THE CURRENT ETHICAL INFRASTRUCTURE THAT WE BUILT OVER THE LAST SEVERAL DECADES ADDRESS THESE NEW RELATIONSHIPS AND WHERE ARE THEIR OPPORTUNITIES FOR INNOVATION. THAT'S REALLY THE LOFTY GOAL THAT WE HAVE WITH OUR STUDY AND WE'RE HOPING WE CAN CONTRIBUTE TO THIS DIALOGUE. SO WE'RE CALLING OUR STUDY, THE VALUE STUDY AND YOU CAN SEE WE'VE BEEN VERY CREATIVE WITH OUR ACRONYMS SO APPARENT VALUES ANDADDITUDES ABOUT A LIBRARY OF KNOWLEDGE, USES OF EHRs AND SAMPLES IN RESEARCH. SO THIS IDEA THAT NOW, WE'RE ASKING PATIENTS TO GIVE UP NOT ONLY SAMPLES FROM THEIR BODY, BUT ALSO THE EHR DATA THAT THEIR HEALTHCARE SYSTEMS ARE COLLECTING AND REALLY WITH 2 LARGE AIMS, REALLY TO THINK ABOUT HOW TO ASSESS HOW PATIENT ATTITUDES, WHAT THEY ARE IN TERMS OF THE GOVERNANCE AND USE OF THIS CLINICAL DATA AND SAMPLES IN RACIALLY AND ETHNIC DIVERSE POPULATIONS AND TO IDENTIFY THE FACTORS ASSOCIATE WIDE THESE ATTITUDES AND PREFERENCE FOR HOW CLINICAL DATA AND SAMPLES ARE USED, ARE STORED ON ANDURE DISSEMINATED. >> SO OUR STUDIES OF MIXED METHODS APPROACH AND I WILL TALK ABOUT THE FIRST 2 IN SOME DETAIL, WE DEVELOP VIDEOS TO TRY TO DO SIM LA TO WHAT RAUGHT LEAN AND LAURA HAVE DONE TO TRY TO GET FOLKS ON THE SAME PAGE IN TERMS OF WHAT THIS--WHAT IS THIS NEW MODEL OF SCIENCE. WHAT DOES IT MEAN TO INTEGRATE DATA. WHAT IS DATA EXACTLY. WHERE ARE THE BOUNDARIES OF THAT. WHAT DOES IT MEAN TO BE PART OF A BIOBANK AND HOW LONG IS THAT RELATIONSHIP? SO SOME WORKING CONCEPT AS TO WHAT THIS NEW MODEL MEANS AND THOSE VIDEOS WE DEVELOPED THEN WERE USED IN FOCUS GROUP DISCUSSIONS WITH VARIOUS RACIAL AND EGHTS NICK GROUPS WHICH I TALK ABOUT A BIT MORE IN DETAIL AND THOSE--THE DATA FROM THE FOCUS GROUPS ARE THEN GOING TO BE USE INDEED A RANDOMIZED PRAGMATIC TRIAL OF A BIOBANK THAT IS BEING WATCHED WITH THE COLLABORATORS THAT ARE HEALTHCARE SYSTEM IN CALIFORNIA TO TEST SOME OF THE THINGS THAT WE BELIEVE ARE OPERATE NOTHING PARTICIPANT AND PUBLIC USE. OKAY, SO VIDEO DEVELOPMENT, NEW KIND OF RESEARCH, SO THIS--THESE VIDEOS WERE CREATED IN COLLABORATION WITH BOOSTER SHOTS WHICH IS 22 VIDEO MAKERS AND WE WORK TOGETHER TO ABIDE BY SOME OF THE CLEAR COMMUNICATION BEST PRACTICES AT THE NIH HAD DEVELOPED AND IN IT WE HAD STORIES ABOUT PATIENTS THAT ARE INTERACTING ABOUT THE MODEL OF SCIENCE, OUR GOAL TO CREATE MATERIALS THAT ARE ATTENDED TO DIFFERENT CONTEXT AND HEALTH LITERACY SO THE QUESTIONS OF WHAT IS A BIOBANK, HOW WILL MY MEDICAL RECORD BE USE INDEED RESEARCH. WE DEVELOP SIMPLIFIED ILLUSTRATIONS THAT WE THOUGHT COULD EFFECTIVELY CONVEY INFORMATION TO TRY TO GET TASKS TO THE CULTURAL AND LINGUISTIC BARRIERS AS PART OF THIS PROCESS WE DID MANY DIFFERENT CYCLES OF ITERATION WHERE WE TESTED THESE DIFFERENT MATERIALS WITH DIFFERENT GROUPS, AND JUST TO GIVE YOU A SENSE, PART OF THIS DEVELOPMENT WAS REALLY TRYING TO FIGURE OUT WELL, WHAT DO WE WANT TO CALL THIS RESOURCE THAT INTEGRATES SAMPLES AND EHR DATA AND WE HAVE THOUGHT ABOUT USING BIOBANK AS A WAY OF DESCRIBING THIS. HOWEVER, IN OUR FOCUS GROUPS, WE FOUND THAT BIOBANK ACTUALLY REFRACTED MANY DIFFERENT KINDS OF THINGS THAT WE DIDN'T NECESSARILY WANT TO CONVEY. FOR SOME IT BROUGHT UP ALL THE IDEAS AROUND FINANCIAL BANKS AND COMMERCE. FOR OTHERS THEY THOUGHT OF IT AS A CRYOBANK, OTHERS THOUGHT ABOUT ORGANS OR THE ORGAN OR BLOOD BANK, OTHERS IT WAS A GOLD MINE. SO WE THOUGHT ABOUT WELL, HOW DO WE WANT TO THINK ABOUT OR HOW DO WE CONVEY THE CENTRAL METAPHOR THAT WOULD BE SO KEY IN HAVING THESE DISCUSSIONS WITH DIFFERENT GROUPS. NOW, THIS IS JUST--1 OF THE STORY BOARDS THAT WERE DEVELOPED AS PART OF THE VIDEO, THIS IS TRYING TO EXPLAIN THE ROAD TO POSITIONS, SO WHAT IS THE PIPELINE FROM THE CLINIC, WHERE YOU HAVE YOUR INTERACTION WITH YOUR PHYSICIAN AND YOUR HEALTHCARE SYSTEM. HOW DO THOSE BITS OF DATA AND SAMPLES AND WORK THEMSELVES INTO THE RESOURCE AND MOVE OUT IN TERMS OF RESEARCH, IN TERMS OF FINDINGS AND FINALLY BACK INTO THAT CLINIC WITH RESPECT YOU'RE INTERACKING WITH YOUR PHYSICIAN. AND TO TRY TO CONVEY THIS, I'M GOING TO SHOW YOU 1 OF OUR VIDEOS AS A WAY OF TRYING TO CONVEY, WHAT WE CAME UP WITH, WE DECIDED TO USE A METAPHOR OF THE LIBRARY OF MEDICAL INFORMATION INSTEAD OF A BIOBANK. WE THOUGHT THAT IT ACTUALLY CONVEYED OR HAD THE CIVIC VALANCE TO IT, THE IDEA OF A SHARED RESOURCE THAT BELONGED TO EVERYONE AND THE IDEA THAT IT WAS SOMETHING THAT PEOPLE KIND OF RESONATED WITH IN TERMS OF SOMETHING THEY KNEW, RIGHT? EVERYBODY SEEMED TO KNOW WHAT A LIBRARY WAS, A PUBLIC LIKEERARY. SO LET ME JUST GO AHEAD AND GIVE YOU A TASTE OF SOME OF THE VIDEOS. >> HOW IS HEALTH INFORMATION USED TO CREATE A LIBRARY OF MEDICAL INFORMATION? A LIBRARY OF MEDICAL INFORMATION IS NOT A PUBLIC LIBRARY FULL OF BOOKS. IT'S A COLLECTION OF DIGITAL CLINICAL INFORMATION AND SAMPLES THAT ARE COLLECTED DURING THE COURSE OF USUAL MEDICAL CARE. THIS INFORMATION COMES FROM PATIENTS BUT IT WILL BE USED FOR RESEARCH STUDIES T. SO EXACTLY WHAT KIND OF INFORMATION IS COLLECTED? WHEN YOU GO TO THE DOCTOR, INSTEAD OF USING AN OLD PAPER CHART YOU NONAPOPTOTIC YOU HAVE AN ELECTRONIC HEALTH RECORD. IT HAS INFORMATION ABOUT YOUR AGE, FAMILY HISTORY, YOUR OWN MEDICAL HISTORY AND YOUR TREATMENT AND MEDICATION BECAUSE YOUR INFORMATION IS NOW DIGITAL SOME OR ALL OF THAT INFORMATION CAN BE COPIED INTO THE LIBRARY. ELECTRONIC HEALTH RECORDS ARE NOT THE ONLY TYPE OF PATIENT INFORMATION THAT CAN BE PUT IN THE LIBRARY. OTHER TYPES OF INFORMATION BEING BE INCLUDED TO PROVOID ADDITIONAL DATA ON THE PATIENT AND ANSWER DIFFERENT RESEARCH QUESTIONS. FOR EXAMPLE, WHEN HAVE YOU YOUR BLOOD DRAWN, BLOOD IS USED TO RUN TESTS ABOUT YOUR HEALTH AND GIVE YOUR DOCTOR IMPORTANT INFORMATION TO DIAGNOSE AND TREAT YOUR CONDITION BUT BLOOD ALSO COULD BE PLACED IN THE LIBRARY FOR FUTURE RESEARCH. THE SAME COULD BE DONE FOR ANY OTHER TISSUE SAMPLE TAKEN FROM A PATIENT SUCH AS A BIOPSY OR SALIVA SAMPLE. OR ANY X-RAYS, MRIs, CAT SCANS, ULTRASOUNDS OR OTHER TYPE OF CLINICAL TESTS. AND THERE COULD BE MANY LIBRARIES OF MEDICAL INFORMATION. FOR EXAMPLE, A SINGLE HOSPITAL OR CLINIC MIGHT COLLECT ELECTRONIC HEALTH RECORDS FROM ALL ITS LOCATIONS INTO A SINGLE DIGITAL LIBRARY. OR THERE COULD BE A GROUP OF HOSPITALS OR CLINICS ACROSS THE COUNTRY THAT ALL AGREE TO COLLECT PATIENTS TISSUE SAMPLES INTO A SHARED PHYSICAL LIBRARY. MORE AND MORE LIBRARIES OF MEDICAL INFORMATION ARE BEING ESTABLISHED TO COLLECT CLINICAL PATIENT INFORMATION FOR FUTURE RESEARCH. WITH THE INCREASE OF THIS TYPE OF RESEARCH, IT'S IMPORTANT TO CONSIDER HOW YOU FEEL ABOUT YOUR HEALTH INFORMATION BEING COLLECTED STORED AND USED FOR RESEARCH. >> THAT GIVES YOU A SENSE SO THAT WAS NUMBER 2, LIBRARY EVER MEDICAL INFORMATION. IT WAS 2 OUT OF THE 6 VIDEOS WE DEVELOPED ABOUT THIS NEW MODEL OF SCIENCE, THE OTHERS WERE NUMBER 3 WAS ABOUT HOW THIS TYPE OF RESOURCE MIGHT BE USED IN TERMS OF PRECISION HEALTHCARE. WE HAD A VIDEO THAT ADDRESSED QUESTIONS ABOUT PRIVACY AND DEIDENTIFICATION, ANONYMIZATION. WE ALSO HAD A VIDEO THAT WENT INTO SOME DETAIL AROUNDS INFORMED CONSENT AND DISCLOSURE AND ADDRESSING QUESTIONS THAT KATHLEEN AND LAURA DISCUSSED AND WHAT IS BROAD COON SENT, SPECIFIC CONSENT OPT-IN AND OPT-OUT IT WILL BE GOOD TO COMPARE FINDINGS WITH YOURS ACROSS THE COUNTRY BUT SOME OF IT IS CONSIST EPT IS YOURS BUT SOME ARE DIFFERENT, IT WILL BE GOOD TO DO THAT COMPARISON AND THEN FEIGNALLY THE LAST VIDEO WAS ON OVERSIGHT AND PATIENT COMMUNICATION AND REALLY THAT'S THE--THOSE ARE THE FINDINGS I WANT TO DISCUSS IN SOME DETAIL TODAY. JUST TO GIVE YOU A SENSE, THE VIDEOS WERE IN ENGLISH, MANDATORYARINE AND SPANISH AND WE CONDUCTED 20 FOCUS GROUPS, 5 DIFFERENT POPULATIONS, AFRICAN AMERICAN, NONHISPANIC WHITES, SOUTH ASIAN, CHINESE THOSE WERE CONDUCT INDEED ENGLISH, MANDATORYARINE AND HISPANIC GROUPS AND ENGLISH AND SPANISH. WE DREW UPON THE BROADER NORTHERN CALIFORNIA AREA, I WILL TURN TO OVERSIGHT AND PATIENT ENGAGEMENT. WE HAVE A LOT OF DATA ON CONSEBT BUT IN TERMS OF WHAT WE WERE FINDING AND FINDING IN OUR DISCUSSIONS IS THAT ON THE 1 HAND WHILE PATIENTS DID CARE VERY MUCH ABOUT HOW THE CONCEPT PROCESS IS GOING TO BE CONVEYED, THEY CARED EQUALLY IF NOT MORE ABOUT THIS IDEA OF OVERSIGHT. AND WHAT WE FIND IN OUR INITIAL DATA,INAL SIS IS THAT PATIENT'S WILLINGNESS TO PARTICIPATE IS REALLY CONDITIONALOT TRUSTWORTHINESS OF THE RESEARCH PROCESS AND IN PARTICULAR THE GOVERNANCE AROUND--THE GOVERNANCE THAT COMES TO OVERSIGHT AND PATIENT INFORMATION THAT WOULD BE RELATED BACK TO THEM AS RESEARCH IS CONDUCTED ON THE MATERIAL. PATIENTS EXPECT OVERSIGHT PROCESS, THAT INSURES APPROPRIATE USE AND USERS AND SO, HERE EVEN THOUGH MUCH OF THE DISCUSSION AROUND CONSENT HAS BEEN ON WHAT TYPES OF RESEARCH ARE BEING CONDUCTED, WHAT WE FOUND IS THAT THERE'S EQUAL IF NOT MORE CONCERN ABOUT USERS, IS THE GOVERNMENT GOING TO COME IN AND USE MY SAMPLE AND DATA OR COMMERCIAL ENTITIES GOING TO COME IN. HOW WILL I KNOW WHAT TYPE OF TRANSPARENCY WILL THERE BE. THEY WANTED ACCOUNTABILITY AS WELL AS ENFORCEMENT SO THE IDEA THERE WOULD BE THIS OVERSIGHT BODY THAT WOULD BE ABLE TO ENFORCE POLICIES ABOUT APPROPRIATE USE AND USERS. THEY EXPECTED THAT THE OVERSIGHT WOULD BE CARRIED OUT, YES BY PATIENTS BUT ALSO DOMAIN EXPERTS, AND THIS IS SOMETHING THAT I THINK IS SLIGHTLY DIFFERENT THAN WHAT WE SEE IN THE LITERATURE IN THE SENSE THAT OVER SIGHT SHOULD INCLUDE PATIENTS AND THEY ARE RELYING ON CERTAIN LEVELS OF EXPERTISE BEING DRAWN IN BY THE ARCHITECTS OF THESE RESOURCES. PATIENTS DESIRE FOR TRANSPARENCY, THAT INCLUDES FEEDBACK ON RESEARCH FINDINGS AND DEMONSTRATED CLINICAL VALUE AND I THINK THAT LAST PART IS I THINK VERY IMPORTANT IN THAT WHILE THERE WAS WIDE SPREAD BELIEF THAT BENEFITS OF PARSE TIS PARTICIPATE IN A TRIALING AND BUILDING A RESOURCE WOULD COME BACK OR THAT HAS THE POTENTIAL TO TOUCH PATIENTS, THEY FELT THAT THEY WANTED TO HAVE OVERSIGHT BE ABLE TO BRING BACK THAT KIND OF DEMONSTRATED CLINICAL VALUE, HOW IS MY RESEARCH ACTUALLY HELPED PATIENTS. THIS--I'M GOING TO GIVE YOU A SENSE OF SOME OF THE EXCERPTS FROM OUR DISCUSSIONS, PATIENTS WANTING OVERSIGHT, WA'S THE OVERSIGHT PROCESS, WHAT'S THE PROCESS FOR ACCESSING DATA, THE QUESTION AROUND A RESEARCH THAT GOVERNS THE ETHICS, THIS EXPECTATIONOT PART OF OUR PARTICIPANTS THAT OVERSIGHT WOULD BE IN PLACE AND SHOULD BE IN PLACE. THIS--THE BELIEF AMONG OUR PARTICIPANTS ACROSS ALL GROUP THRATION OVERSIGHT IS THE KEY TO MAINTAINING PUBLIC TRUST. AND THAT IN ORDER TO HAVE CREDIBILITY IN BUILDING SUCH A RESOURCE, AND ENTERING INTO THESE LONG-TERM RESEARCH RELATIONSHIPS, THAT OVERSIGHT WOULD BE THE KEY IN GENERATING AND BUILDING TRUST BETWEEN PARTICIPANTS AND RESEARCHERS. PATIENTS WANT OVERSIGHT FOR APPROPRIATE USE, AGAIN QUESTIONS AROUND WHO'S GOING TO BE RESPONSIBLE FOR THE DATA SETS. WHO WILL BE INSURE PROOFACY FOR ITS USE, AND WANTING A COMMITTEE THAT IS GOING TO BE RESPONSIBLE AND ANSWERABLE TO PATIENTS. AND THIS IS A AT THE SAME TIME FROM A PARTICIPANT THAT SPEAK TO THE IDEA OF ENFORCEABILITY, DESIRE FOR CHECKS AND BALANCES, A COMMITTEE THAT WOULD BE SET UP TO CREATE THE RULES, BUT ALSO 1 THAT WOULD ENFORCE THE RULES. WHAT ARE GOING TO BE THE CONSEQUENCES ARE--FOR NOT FOLLOWING THE RULES. AND THEN THIS IS A COMMENT FROM 1 OF OUR PARTICIPANTS THAT TALKS ABOUT EXPERTISE. AND THE WANTING OF--THE DESIRE FOR KNOWLEDGEABLE PEOPLE AND PROFESSIONAL PEOPLE TO BE ON THE OVERSIGHT COMMITTEE AND FOR THEIR TO BE TRANSPARENCY ABOUT WHAT OVERSIGHT, HOW THE OVERSIGHT WOULD BE CONSITUTED. AND THEN FINALLY, THIS IS JUST AN EXAMPLE OF PATIENTS WANTING FEEDBACK. SO WHERE YOU'RE SEEING WHAT THE RESEARCH IS GOING TO BE USED FOR, WHO'S GOING TO USE IT, ACCESS IT ON THEIR END, HOW LONG THEY WILL ACCESS THE DATA? THEY WANT AN ETHICAL REPORT CARD OF THE FOLKS THAT ARE GOING TO BE ACCESSING THE DATA. AND THEN FINALLY THE DESIRE TO KNOW HOW THIS RESOURCE HAS ACTUALLY CREATED BENEFIT FOR THE PUBLIC. SO BASED ON THESE INITIAL FINDINGS WE HAVE BEEN WORKING WITH SUTER HEALTH SYSTEM WHICH I'LL TELL YOU MORE ABOUT IN JUST A MINUTE. BUT WE CREATED THESE RECOMMENDATIONS FROM WHAT WE HEARD FROM OUR PARTICIPANTS. THE IDEA THAT AN OVERSIGHT BOARD SHOULD BE IN PLACE THAT HAD THE ABILITY TO REVIEW AND APPROVE DATA SET CURITY MEASURES, IN PARTICULAR DEIDENTIFICATION OF PATIENT DATA THAT WOULD BE ABLE TO EVALUATE RESEARCH REQUESTS AND AUTHORIZE APPROPRIATION USE, OF THE BIOBANK. COMMUNICATE, RESEARCH ACTIVITIES, RESEARCH FINDINGS AND POTENTIAL IMPROVEMENT TO HEALTHCARE MADE POSSIBLE THROUGH THE BIOBANK. MENT AND ALL OF THIS FITS VERY WELL WITH WHAT ODAUGHERTY AND HIS COLLEAGUES HAVE WRITTEN ABOUT IN TERMS OF MODELS OF GOOD GOVERNANCE. THIS IDEA OF RECOGNITION, RECOGNIZING PARTICIPANTS AS ACTIVE PLAYERS AND ACTIVE AGENTS WITHIN THE CREATION OF THE RESOURCE, THE IMPORTANCE OF TRUSTWORTHY SAID, ADAPTIVITY, THE IDEA THIS IS A RESOURCE THAT'S GOING TO CHANGE OVER TIME AND WILL HAVE TO ADAPT TO THOSE CHANGING USES AND CHANGING USERS, AND THEN FIT. THAT IS WHERE THIS QUESTION ABOUT CONTEXT COMES IN. FINALLY I'M JUST IN THE LAST FEW MOMENTS, I WANTED TO TELL YOU QUICKLY WHERE WE'RE GOING WITH THIS, THIS IS OUR MAJOR COLLAB 8OR SO HEALTH NETWORK AND FOUND INDEED 1921, IT'S THE LARGEST HEALTH NETWORK IN NORTHERN CALIFORNIA AND IT EXPANDS THROUGHOUT NORTHERN CALIFORNIA AND URBAN AND RURAL SETTINGS AND THIS IS--THIS SYSTEM IS CREATING IT'S OWN BIOBANK. IN FACT IT'S LAUNCHING IN OCTOBER WHERE IT'S GOING TO ENROLL A HUNDRED THOUSAND OF ITS PATIENTS INTO THEIR NEW BIOBANK. THE FIRST PHASE OF RECRUITMENT WILL BE 25,000 INDIVIDUALS AND THEIR HEALTHY AGING COHORT, ENROLLMENT WILL HAPPEN OVER 3 YEAR PERIOD, AND THEN THERE WILL BE THIS INITIAL PERIOD IN THE FIRST 15 MONTHS WHICH IS WHERE WE'RE GOING TO PARTICIPATE. SO THIS A NONHYPOTHETICAL CONTEXT IN WHICH A HEALTHCARE SYSTEM IS CREATING A BI ON BANK, INTEGRATING SAMPLES AND EHRs FROM THEIR OWN PATIENT POLARIZEDDULATION AND THEY WILL RUN A PRAGMATIC TRIAL WITH THEIR HEALTHY AGING COHORT AND WE'LL HAVE 2--2 HARMS AND 1 WITH AN INTERVENTION THAT INCLUDES OVERSIGHT AND FEEDBACK INFORMATION AS PART OF THAT RECRUITMENT EFFORT AND THEN A CONTROL ARM WHICH DOESN'T WE WILL BE QUERYING BOTH ACCEPTORS AND DECLINERS ABOUT THEIR REASON FOR PARTICIPATING OR NOT AND A SUBSET OF THAT GROUP, WE WILL DIG DEEP IN TERMS OF ATTITUDES AROUND RISK, BENEFIT AND TRUST AND HOPEFULLY BE ABLE TO SEE IF THERE ARE ANY KIND OF RACIAL AND ETHNIC DIFFERENCES AMONG THE POPULATION BUT ALSO OTHER KINDS OF DIFFERENCES THAT WILL BE INN CLUEDED IN THAT TRIAL. SO I KNOW I'M OUT OF TIME. I JUST WANTED TO SAY THIS IS TRULY A COLLABORATIVE STUDY. MY CO INVESTIGATORS AT STANFORD AND ALSO PAL O ALT O MEDICAL FOUNDATION RESEARCH INSTITUTE, COLLABORATORS, SEATTLE CHILDREN'S HOSPITAL AND THEN OUR CONSULTANTS ON THE VIDEO, GARY ARBWORLD AND ALEX THOMAS AND I WILL STOP THERE FOR ANY QUESTIONS. [ APPLAUSE ] >> I QUIET FIRST DIBS, MY ARE CONGRATULATIONS ON A NONCONVENTIONAL AREA OF RESEARCH WHICH WILL BE VALUE ADDED IT IT IS COMPLEMENTAR TOW THE LAST PRESENTATION AND STILL IN VERY DIFFERENT ASPECTS. HERE'S A PERSONAL PREFERENCE VERSES ACCEPTABLE, MAKING AN AWRVEGZ SUSMGZ ON OVERSIGHT OR GOVERNANCE AND YOU'RE TALK WILL EG THE QUESTION OF OVERSIGHT AND GOVERNANCE. A VERY IMPORTANT QUESTION TO ADDRESS. I'LL START OFF BY SAYING I HAVE 3 DISCLAIMERS IF YOU WILL. ONE IS I'M A LATE STAGE BABY BOOMER AND AND THEN THE BABY BOOMER'S KNOWLEDGE IS POWER. THEY--THE 1 LIKES TO GIVE IT UP MPLET THIS IS TRULY AN AREA WHERE GIVING IT UP IS PART OF THE GREATER GOOD. THE SECOND 1 IS I'M A VICTIM OF IDENTITY THEFT SO TRUST IS AN ISSUE, AND IT CAN MESS WITH YOUR LIFE SO I CERTAINLY UNDERSTAND THE PERSPECTIVE OF BOTH OF THESE PRESENTATIONS AND THE THIRD 1 IS AS I SIT BEFORE YOU IN UNIFORM AND TRUST THAT A IMPORTANT PART OF OUR COMMAND AND CONTROL STRUCTURALLY UPPER IF WE DON'T EXECUTE, IF WE DON'T HAVE TRUST, WE DON'T OPERATE WITH RESPECT TO OUR MISSION, SO IT IS NEAR AND DEAR TO MY HEART TO UNDERSTAND TOTALLY HOW THESE PATIENTS ARE OBJECTIVE AND ESPECIALLY SOLDIERS IN OUR ARMY OF MEDICINE HAVING TO BE SUBJECTED TO THOLE TAC WE'RE ABOUT TO THRUST UPON THEM BUT WE WILL ABLE TO DO IT FROM A KNOWLEDGE PERSPECTIVE SO THANK YOU, BOTH OF YOU FOR CONTRIBUTING TO THAT LITERATURE AND OUR THOUGHTFUL APPROACH FOR THOU TO ADDRESS THESE DIFFICULT QUESTIONS. I WILL SAY THE BELL MONTE REPORT TALKING ABOUT THE GRITTER GOOD AND TALKING ABOUT THE THIRD ASPECT, BEING THE 1 OF RESPECT FOR PERSONS AND AUTONOMY AND BOTH ATTENTION THERE, SO TALKING ABOUT THE GREATER GOOD AND THIS PARTICULAR CASE AND HOW WE OBLIGATIONS SOLVE THE AUTONOMY BEES LIKE THE ENGAGEMENT OF--PATIENT AND PART OF GOVERNANCE AND PART OF THE POSITION THAT PEOPLE ARE STARTING TO CATCH ON TO IN DIFFERENT ARENAS. BUT I DO HAVE A QUESTION FOR YOU AS YOU MOLD THIS CONCEPT OF THE GOVERNANCE MODEL, THE FIRST PART OF THE QUESTION IS, IS IT GOING TO BE A DECENTRALIZED MODEL WHERE IT'S HAPPENING AT THE LOCAL MEDICAL INFORMATION LIBRARY LEVEL, OR AN ENTERPRISE LEVEL. AND THEN THE SECOND 1 IS, IT'S GREAT TO HAVE THIS ACCOUNTABILITY BODY FOR THAT HEALTH INFORMATION LIBRARY. WHAT IS THE ACCOUNTABILITY OF THE ACCOUNTABILITY BODY THAT GOES ON? THOSE ARE GREAT QUESTIONS AND I WILL SAY TO PREFACE MY ANSWER AND WE KNOW THAT OVERSIGHT IS NEGLECTED AREA IN TERMS OF IMPERICAL WORK, IT'S NOT 1 OF THE REQUIRES ELEMENTS FOR CONSENT BUT WHAT WE'RE ASKING DO IN OUR RECOMMENDATIONS IN CREATING AN OVERSIGHT COMMITTEE IS SOMETHING UP AND BEYOND WHAT'S REQUIRED SO I THINK THAT'S IMPORTANT TO NOTE. IN TERMS OF YOUR FIRST QUESTION ABOUT THE AUTONOMY AND JUSTICE ISSUE, AND I'M SORRY, REMIND ME AGAIN BECAUSE I GOT YOUR SECOND QUESTION BUT YOUR FIRST QUESTION I MIGHT NOT? >> THE REAL QUESTION IS IS IT A DECENTRALIZED MODEL OR-- >> YEAH, SO, RIGHT. AND SO, WHAT WE FOUND, I WOULD BE INTERESTED TO HEAR KATHLEEN IF WE ASK THIS QUESTION IS THAT, WHEN WE PROBED ABOUT WILLINGNESS TO PARTICIPATE, THEY WERE FINE WITH THEIR HEALTHCARE SYSTEM, HAVING ACCESS TO THEIR DATA AND KIND OF CONTROLLING THE DATA AND SAMPLES BUT THEY WERE VERY WEARY OF IT BEING AT A FEDERAL LEVEL OR EVEN THE IDEA OF INTERNATIONAL RESEARCHERS COME NOTHING AND ACCESSING THEIR DATA AND AS WE KNOW FROM THE PMI, IT LOOKS LIKE WE'RE GOING TO A CENTRALIZED IRB AND CENTRALIZED OVERSIGHT, CENTRALIZED GOVERNANCE STRUCTURE SO I THINK, YOU KNOW THERE'S CERTAIN TRADE OFFS THAT INDIVIDUALS MAKE WHEN THEY KNOW THAT INFORMATION. RIGHT? WHO'S THE BOSS? WHO'S ACCOUNTABLE ULTIMATELY AND SO, FROM WHAT WE'VE SEEN SO FAR IN OUR DATA IS THAT LOCAL CONTROL, LOCAL GOVERNANCE ALLOWS FOR THE FIT. SO YOU'LL REMEMBER THE ODOUBTERYS MODEL OF TRUSTWORTHINESS, ADAPTATION, AND THERE'S A BOX CALLED FIT AND THAT'S WHERE YOU ACTUALLY GET THE FLEXIBILITY TO ATTEND TO SOME OF THE CONCERNS OF YOUR CONSTITUENCY IF YOU CAN DO IT AT A LOCAL CONTROL, NOW THAT GETS IN THE WAY OF SCALE. SO THERE IS GOING TO BE THIS TRADE-OFF AND I THINK THAT THAT'S NOT AN EASY--WE CAN'T COME WITH EASY SOLUTIONS BUT I THINK THAT THAT'S WHAT OUR CONSTITUENTS ARE SAYING IS THAT THEY--THEY WANT--THEY WANT TO KNOW WHO'S CARC COUNTABLA, MAYBE CAN YOU DO THAT IN A CENTRALIZED WAY BUT THAT WILL CREATIVITY I THINK. AND THEN YOUR SECOND QUESTION ABOUT WHO WHO'S ACCOUNTABLE, WHO'S ULTIMATELY ACCOUNTABLE, WHO'S LOOKING OVER THE OVERSIGHT COMMITTEE. I THINK THAT ACTUALLY GOES BACK IF WE REALLY TAKE TO HEART THIS IDEA OF TRUE PARTNERSHIP, I MEAN DOESN'T THAT GO BACK TO THE PUBLIC AND ALLOWS THE PUBLIC TO BE PART OF THAT PROCESS IN THE OVERSIGHT IN SOME WAYS AND THAT RELYS ON A LEVEL OF TRANSPARENCY AND ENGAGEMENT AND UNDERSTANDING OF WHAT THE PROCESSES ARE, THAT GO INTO OVERSIGHT AND POLICY MAKING AND ENFORCEABILITY AND THAT ENFORCEABILITY PART IS WHAT I THINK IS REALLY WHAT'S MISSING, THE IDEA THAT WELL, WE HAVE THIS OVERSIGHT COMMITTEE BUT NOBODY KNOWS WHAT HAPPENS TO THE FOLK WHO IS INIS USED THE DATA OR DID THEY--WERE THEY PUNISHED OR DO THEY NOW HAVE ACCESS TO THE DATA WHAT HAPPENED? AND I THINK SOME OF THAT KIND OF INFORMATION EACH JUST RELAYING THAT KIND OF INFORMATION WOULD GO A LONG WAY. >> ONE QUICK COMMENTAR SCHEWE'RE PROBABLY SITTING ON THIS TYPE OF DATA BUT I WOULD ENCOURAGE YOU TO LOOK AT THE INFLUENCE OF CHOICE CLARIFICATION AS THEY NAVIGATE THESE CONTESTS. SO WE TALK ABOUT THE ASSUMPTION BEING THEY'RE LOCKED INTO AN INDIVIDUAL HEALTHCARE SYSTEM AND DECISIONS BEING MADE BUT REALLY ASKING THEM, WOULD THAT CHANGE WHERE YOU SAW YOUR HEALTHCARE BASED ON OVERSIGHT AND PRINCE PALES IN THEIR LOCAL EN--STRATEGIES TUITION AND I THINK IT'S AN IMPORTANT PART OF THIS RESEARCH. , YEAH, THIS ABILITY TO WITHDRAW WAS VERY PROMINENT IN THE DISCUSSIONS, RIGHT? IF THEY CAPTAIN WITHDRAW THEN HOW CAN THEY REALLY HAVE ANY KIND OF AUTONOMY. >> WE'RE CUTTING INTO OUR COFFEE BREAK BUT HOPEFULLY WE CAN HANG ON HERE, ALSO, GARY AND ESTHER DID YOU HAVE 1? >> I WILL DO THIS QUICKLY. SO MY ORGANIZATION HAS BEEN COLLECTING HEALTH DATA SINCE 1998 BEFORE ANYONE WAS HAPPENING OF USING BIG DATA AND I WANT TO JUST TALK ABOUT THE PRACTICAL REAL WORLD THAT'S OUT THERE WHEN YOU START TO COLLECT DATA SO THE CONVERSATION WE'RE HAVING IS ABOUT STRUCTURED DATA, STRUCTURED DATA COMING OFF THE ELECTRONIC HEALTH RECORDS. THERE ARE SO MANY MIND FIELDS SITTING OUT HERE BECAUSE IN THE REAL WORLD, JUST BEING AS CANDIT AS A CAN, HEALTH SYSTEMS DO A LOT OF DIFFERENT THINGS THAT--IT'LL BE APPREHENSIVE ABOUT TRUE TRANSPARENCY. ISM JUST TELLING YOU, AND SO, YOU KNOW THEY WANT TO COLLECT DATA FROM THE PATIENT THERE'S NOTHING TO GET MOBILE AND I WOULD DARE SAY THAT YOU ARE GOING TO END UP WITH ALL THESE FUTILE SYSTEMS OUT THERE WHERE THE DATA IS NOT MOVING IT AT ALL BECAUSE OF THAT. THE UNSTRUCTURED DAILY BASIS THEA IT'S A WHILED, WILD WEST OUT THERE. THERE ARE PEOPLE WHO ARE COLLECTING UNSTRUCTURED DATA BECAUSE THE AMERICAN PUBLIC IS JUST GIVING IT TO THEM AND SOME REALLY GOD AWFUL THINGS ARE HAPPENING AS A RESULT--BECAUSE IT'S ALSO [INDISCERNIBLE] AND IF YOU REALLY DIG DEEP INTO IT, JUST READ SOME OF THE STUFF THAT'S GOING ON OUT THERE IS PRETTY SCARY AND THERE IS NO OVERSIGHT, SHOOTING OUT, NO COMMITTEE THERE'S NOBODY, SITTING OUT THERE, IT'S THE WILD WILD WEST. SO WHAT YOU'RE TALKING ABOUT ISIC BRINGING IN UNSTRUCTURED DATA TOGETHER WITH STRUCTURED DATA WHICH IS SOMETHING THAT I THINK WE ABSOLUTELY HAVING TO DO. I DON'T KNOW WHO THAT OVERSIGHT BOARD IS. I JUST DON'T KNOW WHO'S DOING THAT. AND THAT'S THE HUGE ELEPHANT IN THE ROOM IS WHO WILL HAVE THAT RESPONSIBILITY AND THEN FINALLY, SHOW YOU HOW BASIC THE ARGUMENT IS, HEALTH SYSTEMS THINK THEY OWN THE PATIENT DATA. IF YOU REALLY HAVE A CONVERSATION WITH THEM, THE PATIENT DOES NOT OWN THE DATA RIGHT NOW. WHEN THEY COME INTO THE HEALTH SYSTEM AND SO, IF YOU CAN GO LOOK AT THE--THE AGREEMENT THAT'S AN ISSUE SIGNED WITH PAIRS, THEY'RE TURNING OVER THAT DATA, LITERALLY AND SAYING THAT THE EITHER PAIR THAT OWNS THAT DATA THAT'S COMING OFF THE ELECTRONIC HEALTH RECORDS. IF YOU LOOK AT SOME OF THE ELECTRONIC HEALTH RECORDS, THEY OWN THE DATA IF YOU GO TO--WE'RE INVOLVED INDEED IT. WE WERE DOING A PROJECT TO COLLECT THE RESEARCH PROJECT TO COLLECT DATA ON AFRICAN AMERICANS WITH HEART FAILURE, THE HOSPITAL SYSTEMS THAT WE WENT TO HAD TO GET PERMISSION FROM THE ELECTRONIC HEALTH RECORD FOR US TO ACCESS THE DATA THAT WAS SIGHTING ON THERE, TRYING THE HEALTH RECORDS AND WE HAD TO GO THROUGH A FORMAL REQUEST, WEEKS AND WEEKS AND WEEKS AND THE REASON IS BECAUSE THEY WANTED US TO COME TO THEM AND CHARGE US A FEE FOR DAT AT INSTEAD OF GOING TO THE HOSPITAL. SO I'M JUST TELLING YOU THAT, WHAT'S REALLY GOING ON OUT THERE AND NOT THIS. IT'S REALLY GUN SMOKE TOWN WHEN YOU'RE OUT THERE TRYING TO MANIPULATE DATAA ANDET GO THE ANSWER. I DON'T KNOW WHAT THE ANSWER IS. BUT I'M TELLING IF YOU GO UP IN THE REAL WORLD, THAT'S A PROBLEM. >> YEAH, I HAVE TOAD TAD THAT COMMENT, I DIDN'T NORMALLY THINK OF IT, BUT THE GEORGE TOWN LAW SCHOOL A COUPLE MONTHS AGO PUT A ON SESSION ON HEALTH DATA SHARING AND EXACTLY WHAT'S HAPPENING IN THE INDUSTRY. I USED TO THINK THIS GROUP WAS NUTS, GOOD SPEAKERS, NUMBER 1 AG GRIIGATOR IS EXPERION. SO IF YOU WERE--[INDISCERNIBLE] >> VERY QUICK COMMENT TO SPEAK THE DISCUSSION WE HAD IN THE VAN ON THE WAY HERE. THAT IT IS TERRIFIC THAT YOU'RE GOING TO THE PUBLIC AND FINDING OUT WHAT TERMS THEY TRUST. IT IS INTERESTING THAT THE PUBLIC TRUSTS THE TERM LIBRARY WHICH IS A GOVERNMENT INSTITUTION AND WE IN THE MEDICAL PROFESSION SHOULD NOT PUT OUR BIAS ON SAYING WE SHOULD USE BIOBANK OR SOMETHING THAT IS--SEEMS LIKE AN ADVANCED OR MODERN TERM TO US BUT IS ACTUALLY THREATENING AND NOT FAMILIAR TO THE PUCK LICK. SO I WANT TO CONGRATULATE YOU ON THAT. >> [INDISCERNIBLE] >> AFTER THE BREAK, YOU'RE UP, WILL YOU NEED THE FULL 20 MINUTES? >> [LAUGHTER] >> I CAN SPEAK QUICKLY OR SLOWLY AS YOU LIKE. OR YOU CAN SKIP ME ENTIRELY, I HAVE TO DO CLOSED SESSION. >> I JUST TRY TO FIND OUT IF WE SHOULD EXTEND THE COFFEE BREAK TO 5 AFTER. >> THAT'S FINE. >> SO WE HAVE 10 MINUTES FOR A BIOBREAK AND THEN COME BACK. [MEETING IS ON A SHORT BREAK ] >> THERA OBVIOUSLY A LOT OF ENERGY WITH THE BOARD AND THE MEETING HERE AND I LOVE THIS. I THINK IT'S TERRIFIC. WE HAVE TO CUT THE SIDE CONVERSATIONS SHORT. HOPEFULLY WE CAN CONTINUE SOME OF THOSE TONIGHT AND TOMORROW. WE NOW HAVE VALERIE FLORENCE IS GOING TO GIVE HER REPORTOT EXTRAMURAL PROGRAMS. SO PLEASE GO AHEAD. >> SO THANK YOU. AS I OFTEN DO, I DECIDED TO TIE IT TO IT TOPIC, YOU KNOW WHY, RIGHT? BECAUSE WE'RE ALL EXCITED ABOUT THIS PRECISION MEDICINE INITIATIVE. AND SO WHEN WE TALK ABOUT THE GRANT PROGRAM, WE TALK ABOUT CLINICAL BIOLOGY, DECISION SUPPORT AND SO I THOUGHT IT WOULD BE INTERESTING TO GO BACK AND LOOK AT THE KINDS OF PROJECTS AS THEY'RE FUNDED INVOLVING PATIENT ENGAGEMENT OR CONSUMERS ENGAGEMENT SO, YOU KNOW THE PRIMARY SOURCES OF PROJECTS OF COURSE ARE OUR USUAL GRANT PROGRAMS SO THIS, WE DIDN'T HAVE A SPECIAL ANNOUNCEMENT SO I'M LOOKING BACK IN HISTORY FOR 10 YEARS AND SO I ALSO KNOW THIS IS HIT HIDIOUSLY TINY. HAVE YOU THE PRINT OUT IF YOU WANT TO READ THIS, I WAS TRYING TO GIVE YOU THE CONTEXT THAT IN OUR GRANT PROGRAM ANNOUNCEMENTS DURING THIS PERIOD, THIS IS THE KIND OF STUFF THEY SAY. THEY DON'T SAY, YOU KNOW HOW THE COMPUTERS HOW DO CONSUMERS THINK ABOUT HEALTH INFORMATION, RIGHT? THEY TALK MUCH MORE ABOUT INFORMATICS. HOWEVER, IT'S NOT LIKE IT ISN'T IN THERE ARE SO THAT'S WHY WE HAVE HAD GRANTS IN THESE AREAS AND WE'VE ALSO HAD RESOURCE GRANT PROGRAMS FOR A NUMBER OF YEARS THAT INVOLVED--WELL, SINCE 2010, WE'VE ASKED THAT THEY EXPLOIT COMPUTER AND INFORMATION TECHNOLOGY TO BRING HEALTH RELATED INFORMATION TO HEALTH REDUCED DISPARITIES, RIGHT? SO REDUCE HEALTH INFORMATION RESOURCES TO REDUCE HEALTH DISPARITIES AND DURING THE RECOVERY ACT WHEN WE HAD A LOT OF MONEY TO SPEND WE FOCUSED IT A LOT ON ANSWERING CLINICAL QUESTIONS AND DECISION SUPPORT FOR COMPLIQUE DECISIONS. SO I TOOK THE--THIS IS THE QUICK AND DIRTY WAI TO FIND OUT, I KNOW YOU KNOW THIS, YOU'VE SEEN ME DO IT BEFORE WHAT WE'RE FUND NOTHING ANY PARTICULAR TOPIC AREA. I WENT TO THE NIH REPORTER AND I SEARCHED THE TERMS CONSUMER OR PATIENT IN THIS TIME PERIOD AND IT TOLD ME THAT WE HAD FUNDED 500 FORPROJECTS FOR $158MILLION, RIGHT AND THEN THAT'S THAT MUCH OUT OF THAT MUCH THAT WE SPENT ON EVERYTHING ALTOGETHER. SO, THESE ARE THE KINDS OF TOPICS, YOU'VE SEEN THIS MAP BEFORE, YOU KNOW THAT ON THESE AREAS, CLINICAL TRIALS, ELECTRONIC HEALTH RECORDS HEALTH DISPARITIES AND DRILL DOWN AND GET TO THE ACTUAL PROJECT: I ALSO SQUASHED THE UNITED STATES SO YOU COULD SEE SORT OF THE DISTRIBUTION AND IT PROBABLY DOESN'T SURPRISE YOU BECAUSE THIS IS TRUE FOR MANY PARTS OF NIH. YOU KNOW, THE COAST PROVIDES A LOT OF GRANT APPLICATIONS AND RECEIVE A LOT OF GRANT FUNDING BUT THERE'S A LOT OF THE U.S. IN THE BUSINESS THAT ENGAGED. LET SO THE ISSUE WHEN I STARTED EYEBALLING THE LIST OF PROJECTS, YOU KNOW, THE WORD PATIENT WILL BRING UP CLINICAL DECISION SUPPORT THAT WAS ACTUALLY ABOUT PHYSICIANS AND HARDLY HAD ANYTHING TO DO WITH PATIENTS SO IT MIGHT HAVE SAID PATIENT INFORMATION SOMEWHERE. SO I WENT BACK AND WENT TO JUST CONSUMERS. THAT'S A MUCH SMALLER NUMBER OF PROJECTS IN THE SAME TIME PERIOD AND EVEN MORE SPREAD TOWARDS THE OUTSIDE EDGES BUT THE TOPICS ARE A BIT DIFFERENT NOW. WE'RE LOOKING AT BARRIERS TO HELP WITH INFORMATION LITERACY AND READABILITY, SOMETHING THAT CAME UP EARLIER. SO I LOOKED UP CONSUMER FOR ALL OF NIH BECAUSE I WAS KIND OF CURIOUS, OKAY, FOR THIS PERIOD, WHO ELSE AT NIH WAS EVEN THINKING ABOUT CONSUMERS AND THIS TELLS YOU THAT, YOU KNOW? SO DOES IT SURPRISE YOU? MENTAL HEALTH WAS THINKING ABOUT CONSUMERS, THANK GOODNESS SO WE'RE THE NATIONAL CANCER INNSITUTE, NATIONAL INSTITUTE OF AGING NLM IS ACTUALLY THE SIXTH SLICE IN THIS PIE WITH THE NUMBER OF GRANTS THAT I MENTIONED BUT A TINY AMOUNT OF THE MONEY BEING PUT INTO IT. SO, OUR SUCCESS RATE OVER THE PERIOD WAS 11% WHICH ISN'T GREAT AS YOU KNOW. WE TRY TO KEEP IT UP HIGHER WHEN WE CAN. AND DURING THIS PERIOD WHEN OUR GRANT FUNDS HAVE BEEN CONSTRAINED WE FOCUSED MORE MONEY AND TRAINING AND IN INFORMATICS RESEARCH AND SO THERE'S AN INEVITABLE SHRINKAGE AS YOU CAN SEE IN THE NUMBER OF GRANTS THAT WE HAVE FUNDED IN THIS AREA, STILL, I WANT TO GIVE YOU A COUPLE OF EXAMPLES, QING, ZENG HAS BEEN AT THE CORE OF 1 OF THE INTERESTING AREAS. SHE'S A COMPUTER SCIENTIST WHO STARTED ON A GRANT QUITE A LONG TIME AGO JUST AFTER I CAME TO NLM IN 2002 AND SHE WAS LOOKING AT THAT TIME AT VOCABULARY SUPPORT FOR CONSUMERS AND THE WORK SHE DID BY CAPTURING THE TERMS PEOPLE USE TO SEARCH FOR HEALTH INFORMATION ACTUALLY ENDED UP BEING INCORPORATED ON LIBRARIES HERE AT WHERE THAT USE MEDLINE PLUS. SO THAT IS A REAL WIN-WIN. SHE ALSO HAD A COUPLE OF OTHER PROJECTS THAT I THINK ARE VERY INTERESTING. SO, THIS IS 1 EXAMPLE. SHE'S BEEN WORKING TRYING TO DEVELOP AN AUTOMATED TOOL, RIGHT? THAT WOULD TAKE DISCHARGE SUMMARY FROM THE HOSPITAL OR OTHER KINDS OF HEALTH INFORMATION AND AUTOMATICALLY CONVERTED TO AN IMAGE FOR PEOPLE WHO CAN'T READ OR CAN'T READ ENGLISH. SO SHE HAS--I HOPE TO HAVE HER COME SPEAK TO YOU AND I ASSURE YOU SHE HAS GREAT EXAMPLES OF HOW PEOPLE INTERPRET [INDISCERNIBLE]. [AWAY FROM MIC ] BUT AS SHE SHOWS, AS THIS SHOWS, I TOOK THIS FROM A PUBLISHED ARTICLES THAT WHEN PEOPLE SEE IT IN PERSON, VERSUS ONLINE THEY HAVE DIFFERENT REACTIONS ALSO, RIGHT? SO THIS IS ALSO VERY INTERESTING. AND SO, I THINK THAT THIS CHALLENGE BECAUSE IT DOESN'T KALE TO HAVE PEOPLE SITTING AROUND EVERYWHERE TRANSLATING INTO--UNLESS YOU CAN USE COMPUTERS TO HELP YOU, TO GIVE TO EITHER VISUAL IMAGES OR SIMPLER TEXT TO BE ABLE TO DO THAT TEXT CONVERSION, THIS OTHER GRAPHIC OVER HERE ON ANOTHER 1 OF HER ARTICLES, I PUT UP BECAUSE I SEE THESE AS INFLUENCED DIAGRAMS IN A WAY JUST TO SHOW US WHO IS IT THAT'S CITING THIS WORK ON MAKING UNDERSTANDABLE IMAGES FOR CONSUMERS AND SO, YOU CAN SEE MEDICINE IS A BIG CHUNK, COMPUTER SCIENCE, SOCIAL SCIENCE O I SEE THAT AS I PLUS, TOO, THAT THE WORK WE'VE BEEN DOING HAS BEEN SEEN AND THOUGHT ABOUT AND EVEN CITED BY OTHERS. ANOTHER 1 OF OUR EARLY GRANTS, WANDA PRAT AT THE UNIVERSITY OF WASHINGTON, SHE WAS WORKING WITH FEMALE BREAST CANCER PATIENTS, SURVIVORS AND WORKING WITH THEM ABOUT MANAGING HEALTH INFORMATION AND THEIR OWN LIVES. AGAIN, THIS IS--THESE TOO WERE VERY EARLY IN OUR--IN MY TIME HERE AND ALSO STAND OUT BECAUSE OF THE WORK THEY DID. BEING FOCUSED ON INDIVIDUALS. AND AGAIN THE INFLUENCE DIAGRAM FOR THESE 2 ARTICLES FROM WANDA'S WORK, 1 IS HOW PATIENT EXPERTISE DIFFERS FROM CLINICIANS AND THE OTHER IS DETECTING AND PRESENTING, RECOVERING FROM MEDICAL AREAS INFLUENCE DIAGRAMS ARE QUITE DIFFERENT, RIGHT? SO MEDICINE IS REALLY INTERESTED OVER HERE, COMPUTER SCIENCE AND OTHER AREAS MORE SO IN THE--HOW EXPERTISE DIFFERENCE. THIS IS CURRENT WORK GOING ON AT THE UNIVERSITY OF ARIZONA. DR.LEROY HAS BEEN--SHE'S BEEN WORKING IN THE AREA OF TEXT READABILITY AND UNDERSTANDABILITY AND SO, I'M MOVING TO RIGHT NOW--RIGHT NOW SHE'S WORKING ON TRYING TO SIMPLIFY TEXT ON THE FLY. RIGHT? THE KIND OF THING WE WERE TALKING ABOUT, IF YOU HAVE SOMETHING NOT UNDERSTANDABLE, COULD YOU MAKE IT UNDERSTANDABLE MORE QUICKLY. SO SHE'S USING AMAZON AND DOING USER STUDY, SHE'S USING ENGLISH AND SPANISH AND SO THIS, I TOOK FROM 1 OF HER ARTICLES, SO SHE'S DOING A TEST, SHE CALL ITS--A MUSEUM MAN INTELLIGENCE TEST, PART TELEVISION IS TO TRY AND GET A SENSE OF HOW MUCH THE THE COMMUNITY SHE'S WORKING WITH UNDERSTANDS AND GETS WHAT'S GOING ON, WHEN THEY READ A SENTENCE LIKE THAT CAN AT A FILL IN THE BLANKS. SO THIS IS SLOW GOING WORK AND THEN SHE ASKED THEM TO SAY HOW DIFFICULT WOULD YOU SAY THIS IT ACCIDENT IS TO UNDERSTAND SO THOSE ARE RESEARCH GRANT EXAMPLES SO WE HAVE THOSE RESOURCE GRANTS, I MENTIONED AND I WANT TO MENTION THIS IS AN EXAMPLE OF 1 OF OUR INFORMATION RESOURCES TO REDUCE HEALTH DISPARITIES GRANTS AND THIS 1 THEY ARE WORKING ON CREATING PEER REVIEWED HEALTH RESOURCE FOR NATIVE AMERICAN ALASKA NATIVE AND AMERICAN INDIAN MEN. SO THEY'VE BEEN WORKING WITH FOCUS GROUPS, AND HAVE JUST STARTED THEIR WORK. SO THEY'RE ALSO GOING TO TALK WITH PHYSICIANS AND MAKING PRESENTATIONS IN BROADER SETTINGS IN ORDER TO GET FOCUS GROUP INPUT. AND FINALLY THIS IS MY LAST SLIDE OF THESE THINGS, WE'VE HAD SOME--WE'VE HAD A COUPLE OF GRANTS COME IN THROUGH--THE NIH HEALTH LITERACY, TRANSNIH, SO A BUNCH OF INSTITUTES AND SO THE 1S WE FUNDED, THESE ARE MORE PATIENT ORIENTED, BUT STILL, THEY'RE DIRECTLY DEALING WITH INFORMATION BEING DELIVERED TO THE PATIENTS AND IN SOME CASES, HELPING IN THIS STEPHEN P A TEK'S WORK, TRYING TO HELP WITH INFORMATION, SHARING WITH A PATIENT AND A PRIMARY CAREGIVER OUTSIDE OF A CLINICAL SETTING. SO THESE ARE JUST EXAMPLES. WE HAVEN'T GOT A THREAD--NOT LIKE I CAN SHOW YOU FOR CLINICAL DECISION SUPPORTS. THESE ARE THE KINDS OF TOPICS BECAUSE OURS IS A OPEN WINDOW, WE ONLY GET THE APPLICATIONS THAT PEOPLE THINK ARE IN THERE. SO I WANTED TO MENTION 1 MORE OF OUR EARLY RESEARCHERS IN THIS AREA. [LAUGHTER] , I WAS PRIVILEGED TO BE HER PROGRAM OFFICER FOR PART OF THIS TIME. BUT IT'S STILL--THIS WAS PROMOTIONAL SOME OF THE EARLIEST WORK THAT NLM SUPPORTED. I DIDN'T GO DO THE HISTORY BUT I WILL RECOLLECT BELIEVE ME, WORKING WITH HOME CARE OF PATIENTS AND HOW COMPUTERS MIGHT BE ABLE TO HELP AND SO, I--LATER HAD A GRANT THAT WAS RELATED IN A WAY THAT I DIDN'T UNDERSTAND AS MUCH UNTIL I WAS LOOKING AT THE PUBLICATIONS AND CITATIONS AND LOOK AT THIS 1. CONSUMERS MAY BE MORE WILLING TO SHARE MEDICATION, INFORMATION THAN WE THINK. SO THERE'S MORE TO LEARN FROM, AND I THOUGHT AGAIN, THIS INFLUENCE SHOWS HEALTH PROFESSIONAL AND SOCIAL SCIENCES, ENGINEERING COMPUTER SCIENCE, MATHEMATICS BIOCHEMIST RADIOY. I THINK IT'S REALLY TELLING FOR HOUR IMPORTANT THIS WORK IS. THAT PEOPLE ARE LOOKING FOR IT AND THEY'RE FINDING IT AND WE'RE HAPPY TO SUPPORT IT. SO WE HAVE SUPPORTED SOME WORK. THOSE ARE JUST EXAMPLES THAT ARE DIRECTLY DEALING WITH PATIENTS AND HOW THEY USE INFORMATION, HEALTH INFORMATION OR WITH CONSUMERRINGS BUT OUR INVESTMENTS IN THAT AREA ARE DWARFED LET'S FACE IT BY THE AMOUNT WE PUT INTO OTHER BIOMEDICAL INFORMATICS, THE TRANSLATIONAL BIOINFORMATICS AREAS LIKE THAT. OUR GO8, OTHER THAN THAT, THAT RESOURCE GRANT TO DEVELOP INFORMATION RESOURCES TO HELP REDUCE HEALTH DISPARITIES. WE DON'T HAVE ANY ACTIVE FUNDING OPPORTUNITY THAT IS FOCUSED ONLY ON CONSUMERS AND PATIENTS IN HEALTH INFORMATION. OUR IN THIS YEAR WHEN WE REISSUE OUR RESEARCH GRANT, OUR NORMAL RESEARCH GRANT TAKEN--THEY WE KEEP OPEN, WE DID ADD A BULLET SPECIFICALLY IN THE THIS AREA, NOT QUITE THE SAME AS HAVING A FOCUS PROGRAM BUT IT'S A STEP TOWARD REMINDING PEOPLE THAT IT'S IMPORTANT. THAT'S ALL I HAVE TO TELL YOU ABOUT IT. JUST HIGHLIGHTS OF WHAT WE'VE DONE FOR 10 YEARS. QUESTIONS OR COMMENTS AND IF YOU THINK WE OUGHT TO DO MORE, NOW'S THE TIME TO SAY IT OUTLOUD IN THE PLANT. >> THEN WE'RE ABOUT TO HEAD INTO OLD SESSION IF THERE ARE NONE. >> [INDISCERNIBLE].