>> GOOD MORNING. LADIES AND GENTLEMEN, MY NAME IS GEORGE MENSAH. I'M THE DIRECTOR FOR THE CENTER FOR TRANSLATIONAL RESEARCH AND IMPLEMENTATION SCIENCE AND NATIONAL HEART, LUNG AND BLOOD INSTITUTE HERE AT THE NATIONAL INSTITUTES OF HEALTH. IT'S A REAL DELIGHT TO HAVE YOU JOIN US, BOTH HERE IN PERSON AND AT NATCHER CONFERENCE CENTER, AND ALSO ONLINE. WE'VE BEEN VERY, VERY FORTUNATE DURING THIS CONFERENCE TO HAVE THREE OUTSTANDING LEADERS BEGIN THE DAY WITH A KEYNOTE SESSION. AND TODAY IT'S MY PLEASURE TO INTRODUCE ERIC DISHMAN, WHO IS THE DIRECTOR OF THE "ALL OF US" RESEARCH PROGRAM. IT'S A MAJOR NIH RESEARCH EFFORT THAT'S DESIGNED TO CREATE A COHORT OF A MILLION DIVERSE PARTICIPANTS THAT WOULD HELP US ADVANCE PRECISION MEDICINE. SO WE ARE REALLY DELIGHTED TO HAVE ERIC WITH US. JUST VERY BRIEFLY, BEFORE ERIC JOINED NIH, HE WAS AT THE INTEL CORPORATION, WHERE HE SERVED AS AN INTEL FELLOW AS WELL AS A VICE PRESIDENT FOR THE HEALTH AND LIFE SCIENCES GROUP. ERIC HAS NATIONAL AND INTERNATIONAL RECOGNITION FOR HIS REAL EXPERTISE AS AN INNOVATOR, PARTICULARLY WHEN IT COMES TO HOME AND COMMUNITY-BASED TECHNOLOGIES, AND THERE'S A LOT WRITTEN ABOUT ERIC IN THE PROGRAM BOOK THAT YOU CAN READ. I REALLY WANT TO BE BRIEF SO WE CAN SAVE TIME FOR A REAL RICH DIALOGUE AT THE END OF HIS PRESENTATION. BUT THERE'S ONE VERY BRIEF -- MY OWN PERSONAL STORY, WHAT I REMEMBER ABOUT ERIC THAT I WANT TO SHARE WITH YOU. WHEN I HEARD THAT HE WAS COMING, I REMEMBERED THAT I REALLY HADN'T MET HIM AT ANY OF OUR MEDICAL SCIENCE MEETINGS OR ANY OF OUR EPIDEMIOLOGY MEETINGS, OR COHORT STUDY MEETINGS. SO I WANTED TO READ ABOUT HIM. AND THERE WAS A GREAT ARTICLE IN THE "SCIENCE" MAGAZINE, THIS IS A MAJOR SCIENCE JOURNAL, ABOUT A YEAR-AND-A-HALF AGO, I'M SURE ERIC REMEMBERS THIS, WHERE HE WAS INTERVIEWED, AND ONE OF THE INTERVIEW QUESTIONS WAS, WE KNOW THAT YOU NOW ARE GOING TO LEAD THIS MAJOR NIH EFFORT IN COHORT STUDIES AND GENOMICS AND PRECISION MEDICINE, BUT YOU DON'T HAVE A BACKGROUND IN MEDICINE, DON'T HAVE A BACKGROUND IN GENOMICS, YOU DON'T HAVE A BACKGROUND IN COHORT STUDIES SO WHY DID NIH CHOOSE YOU? I THINK HIS RESPONSE WAS BRILLIANT. SO IF YOU HAVE AN INTERVIEW COMING UP, YOU SHOULD TALK TO ERIC, BECAUSE WHAT HE SAID WAS, AND I QUOTE, I THINK I'M PARAPHRASING, I THINK I BRING A WEIRD MIX OF CAPABILITIES THAT NIH NEEDS. IN ESSENCE, YOU NEED ME SO YOU SHOULD HIRE ME. I THINK THAT'S DID THE JOB. HONESTLY I WENT TO EXPLAIN HE BRINGS A SOCIAL SCIENCE PERSPECTIVE, HE BRINGS AN ANTHROPOLOGISTS PERSPECTIVE, ETHNOGRAPHIC PERSPECTIVE AND PATIENT-CENTERED PERSPECTIVE AND PERHAPS MOST IMPORTANTLY HE BRINGS A VERY UNIQUE PERSONAL EXPERIENCE AS SOMEONE WHO SURVIVED CANCER AND IS FREE OF CANCER BECAUSE OF THE BENEFITS OF PRECISION MEDICINE. WE COULDN'T HAVE A BETTER PERSON TO BEGIN THE DAY WITH US. SO PLEASE JOIN ME IN WELCOMING ERIC. HE'S GOING TO TALK ABOUT HOW WE ACCELERATE PRECISION MEDICINE FOR ALL OF US AND REALLY EVERYTHING YOU WANTED TO KNOW ABOUT OUR "ALL OF US" PROGRAM. ERIC, IT'S A WONDERFUL PLEASURE. WELCOME. [APPLAUSE] >> I JUST WANT HIM TO KEEP GOING WITH INTRODUCTIONS. THAT WAS FABULOUS. AND VERY MUCH APPRECIATED. I WAS HOPING HE WASN'T GOING TO ASK ME WHAT I SAID IN RESPONSE TO THE INTERVIEW BECAUSE I WAS NOT SURE I COULD REMEMBER IT. I AM SORT OF A WEIRD PERSON. I'VE BEEN A WEIRD PERSON EVERYWHERE I'VE EVER BEEN. I MEAN, TO THINK THE SOCIAL SCIENTIST, PATIENT, PATIENT ADVOCATE WOULD END UP RUNNING INTEL HEALTH AND LIFE SCIENCES BUSINESS, I MEAN, INTEL FELLOW PROGRAM, THE FIRST INTEL FELLOW WITH TED HOFF INVESTED TRANSISTOR, NOW YOU'VE GOT A SOCIAL SCIENTIST. I'VE BROUGHT THAT FOR ALMOST 30 YEARS NOW, AND ALONG THE WAY I'VE DESCRIBED MYSELF AS AN ENTREPRENEURIAL PATIENT. I DIDN'T NECESSARILY MEAN -- YES, I'VE DONE LOTS OF STARTUPS AND PRODUCTS AND THINGS LIKE THAT. BUT IT WAS MUCH MORE IN THE SENSE OF AS A PATIENT I LEARNED THAT YOU NEEDED TO INVENT YOUR OWN PATH FORWARD THROUGH THE HEALTH SYSTEM, ESPECIALLY IF YOU HAVE A COMPLEX COMPLICATED CONDITION LIKE I DID WHICH I'LL TALK ABOUT IN A MOMENT. EVERYWHERE ALONG THE WAY FOR PATIENTS THAT I ADVOCATE FOR WE'RE INVENTING A PATH THROUGH THAT HEALTHCARE SYSTEM. I WOULD ARGUE PATIENT ADVOCATES IN SOME WAYS ARE PRECISION MEDICINE PEOPLE BECAUS WE'RE MEETING AN INDIVIDUAL AND DEALING WITH A SYSTEM AND TRYING TO HELP THAT PARTICULAR INDIVIDUAL GET BETTER, NAVIGATING THROUGH A REALLY COMPLEX HEALTH SYSTEM THAT YOU HAVE TO SORT OF SET FOR YOURSELF. SO MY SORT OF ADVENTURES IN POINT-OF-CARE TECHNOLOGIES BEGAN AT A VERY YOUNG AGE. THAT WAS ME WHEN I WAS 16. THAT WAS MY GRANDMOTHER, WHO HAD ALZHEIMER'S. I BECAME A CAREGIVER FOR HER WHEN I WAS 16. THAT SWEATER WILL COME BACK IN STYLE, I PROMISE YOU. I'M NOT SURE I CAN FIT IT ANYMORE. I DON'T THINK I HAVE IT ANYMORE BUT IT'S GOING TO COME BACK. AND, YOU KNOW, THE ALZHEIMER'S EXPERIENCE FOR FAMILIES AND FOR THE MEDICAL SYSTEM IS EXPENSIVE IN PAIN AND SUFFERING, IS EXPENSIVE IN CAREGIVER BURNOUT, IS EXPENSIVE IN MONEY. BECAUSE IT'S SUCH -- IT'S NOT JUST THE PERSON WHO GETS ALZHEIMER'S, IT'S THE WHOLE RIPPLE OF EFFECT OF EVERYONE AROUND THEM, PARTICULARLY THEIR CAREGIVERS. SO IN SOME WAYS THIS WAS PROTOTYPE NUMBER ONE. I LEARNED TO DRIVE, THANKS TO THIS GRANDMOTHER. OR I WAS 16, HADN'T YET GOTTEN MY DRIVER'S LICENSE, I WAS HOME AT NIGHT. YOU GOT TO REMEMBER, PRE-CELL PHONE, WE HAD LAND LINE PHONES, IT WAS LONG DISTANCE TO MY GRANDPARENTS' HOUSE. I LIVED IN CHARLOTTE, NORTH CAROLINA. THEY LIVED IN RURAL NORTH CAROLINA. ABOUT AN HOUR AWAY. AND MY GRANDFATHER CALLED. HER HUSBAND CALLED. AND SAID, ARE YOUR MOM AND DAD THERE? NO, THEY WENT TO A MOVIE. WELL, SHE'S BURNED DOWN THE HOUSE, OR PRACTICALLY BURNED DOWN THE HOUSE. HE'S ALL A PANIC AND NEEDS HELP. I'M LIKE, OKAY, I'M COMING. AND SO I TOOK THE CAR KEYS THAT WERE ON THE COUNTERTOP NEVER HAVING DRIVEN AND EXPERIENCED URBAN DRIVING IN CHARLOTTE, EXPERIENCED INTERSTATE DRIVING IN GETTING THERE AND RURAL FARM ROAD DRIVING ALL ON MY FIRST DRIVING ADVENTURE BUT MANAGED TO GET THERE SAFELY AND HELPED HIM AND THE KITCHEN HAD CAUGHT ON FIRE BUT HE HAD GOTTEN IT OUT. AND THE CHALLENGE HAD BEEN MY GRANDMOTHER MADE CHOCOLATE CAKE FREQUENTLY, THANK GOD, WHAT GREAT GRANDMOTHER, BUT AS THE DEMENTIA WAS PROGRESSING SHE WOULD WAKE UP AT 2:30 IN THE MORNING, TIPTOE DOWN, TRY TO START MAKING A CHOCOLATE CAKE, YOU'D FIND THE OFF OVEN ON WITH A BAG OF FLOUR IN IT AT 450 DEGREES. SO THE INITIAL THING THAT WE DID ONCE WE GOT A NEW OVEN AND ALL OF THAT WAS THOUGHT, OKAY, WE'LL UNPLUG IT. SO WHEN SHE WOULD COME DOWN AND DO THAT IN THE MIDDLE OF THE NIGHT HER FRUSTRATION THERE WAS NO HEAT, SHE WOULD START DOING -- IT WAS HORRIBLE. SHE WOULD START HITTING IT WITH A CHAIR, DOING CRAZY THINGS TRYING TO MAKE IT WORK BECAUSE SHE WAS SO CONFUSED. THIS WAS MY FIRST -- I'M A SOCIAL SCIENTIST, SELF-TAUGHT, THAT'S HOW I PAID FOR COLLEGE. I WENT TO RADIO SHACK, SENSORS, PHONE TECHNOLOGIES, TRYING TO BUILD A SENSOR NETWORK THAT WOULD ALLOW HER TO USE THE OVEN BUT IF IT WAS AT NIGHT IT WOULD ALERT MY GRANDFATHER UPSTAIRS AND/OR A PHONE CALL TO US IN CHARLOTTE TO LET US KNOW IT'S IN THE MIDDLE OF THE NIGHT, MY GRANDMOTHER'S TRYING TO TURN ON THE OVEN. IT WAS DEFINITELY A PROTOTYPE. DID NOT WORK WELL. I HAD THIS IMPULSE, I NEED TO LET HER DO THE RITUALS PART OF HER EVERYDAY LIKE. IF I DISRUPT THE RITUALS SHE BECOMES MORE AGITATE AND OUT OF CONTROL, HOW COULD I USE TECHNOLOGY TO DO THAT? THAT THEME IS GOING TO COME BACK OVER AND OVER AGAIN. IN GRADUATE SCHOOL I'M TRAINED AS A SOCIAL SCIENTIST, I DO ETHNOGRAPHIC WORK, QUALITATEIVE FIELD WORK, LIVING AND BREATHING. STUDIES WITH PATIENTS, I DID AN ALZHEIMER'S STUDY AT INTEL WHEN FIRST GETTING STARTED THERE, RECRUITED 50 TO 100 HOUSEHOLDS AND THEN LIVED WITH THEM FOR WEEKS AT A TIME DURING DIFFERENT PARTS OF THE YEAR. AND IF THEY GO TO THEIR DOCTOR, WE STUDY THE DOCTOR EXPERIENCE. IF THEY HAVE A FAMILY CAREGIVER OR NEIGHBOR, WE STUDY THAT PERSON. WE STUDIED THE WHOLE NODE OF CARE. TOO OFT SHALL IN -- TOO OFTEN WE LOOK AT PEOPLE IN THE CLINIC, LEAST AMOUNT OF TIME THEY SPEND IN THE HEALTH CARE SYSTEM, WHAT ABOUT THE REST OF THEIR LIFE? WHAT ABOUT THE HOME AND THE COMMUNITY? SO THESE ARE TRANSCRIPTS, I'M ASSUMING ANALYSTS TODAY HAVE COMPUTERS TO AUTOMATE TRANSCRIPTION OF HUMAN SPEECH BECAUSE THIS WAS TORTURE IN GRADUATE SCHOOL. UNFORTUNATELY I GOT REALLY INTERESTED IN LAUGHTER. SO AS A CONVERSATION ANALYST WE WOULD DO NATURALLY RECORDED CONVERSATION, AS NATURAL AS IT CAN BE WITH A TAPE RECORDER, WITH DOCTOR/PATIENT INTERACTION, I BECAME INTERESTED IN YOUR PATTERNS OF SPEECH ARE THESE HIGHLY FAMILIAR REPETITIOUS VERY NORMAL THINGS THAT IF YOU START TO HAVE COGNITIVE OR OTHER DIFFICULTIES WILL SHOW UP IN YOUR SPEECH IN VERY MICROSCOPIC WAYS. THIS WAS MY HYPOTHESIS. I STARTED LOOKING AT THE OPENING OF PHONE CALLS. THIS WAS A PARTICULAR PHONE CALL WHERE IT'S LIKE HEY, THERE'S A BELTONE, A BEEP YOU HEAR BEFORE YOU'RE TRANSCRIPTION, HELLO, HELLO, PAM, YEAH, BEEP, IS LINDSAY THERE, AND THE ANSWERING MACHINE IS BEEPING AS THEY ARE HAVING THE CONVERSATION. PARDON? IS LINDSAY THERE. SHE'S DOING HER LAUNDRY. OKAY, WILL YOU HAVE HER CALL ME WHEN SHE GETS THERE. IF THE ANSWERING MACHINE HADN'T COME UP THEY WOULD HAVE DONE A FAMILIARITY SEQUENCE. HELLO? OH, HEY, ARE YOU LOOKING FOR LINDSAY? BUT THE ANSWERING PLAN IS ON, YOU CAN'T HEAR AND SO FORTH. I USED TO LOOK AT LAUGHTER. IT ENDS UP IN THE SEQUENCES OF LAUGHTER, VERY PREDICTABLE, AS YOU DEVELOP A RELATIONSHIP WITH A LOVED ONE OR SOMEONE ELSE YOU DEVELOP A CANONICAL FORM OF LAUGHTER. I DID A BUNCH OF WORK TO LOOK AT, ALL RIGHT, IF YOU HAVE YOUR SORT OF BASELINE OF LAUGHTER WHAT ARE DEVIATIONS OVER TIME, WE COULD PREDICT PEOPLE WERE HAVING MARITAL PROBLEMS BEFORE IT IS CONSCIOUS, SUBTLE WAYS LAUGHTER WAS CHANGING. APPLIED TO ALZHEIMER'S, WHEN WAS THE FIRST TIME YOU STARTED THINKING OR TALKING ABOUT, YOU KNOW, YOUR GRANDMOTHER OR YOUR LOVED ONE NOT BEING RIGHT IN TERMS OF COGNITIVE? AND A LOT OF PEOPLE WOULD TELL US STORIES LONG BEFORE THERE WAS AN ALZHEIMER'S DIAGNOSIS OR ANY OTHER COGNITIVE PROBLEM, SOMETIMES YEARS AND YEARS BEFORE, LITTLE THINGS. OH, MOM OR DAD HAD TROUBLE LIKE ANSWERING THE PHONE. IT WAS LIKE THE PHONE BECAME A LITTLE BIT MORE CONFUSING TO THEM. VERY SMALL WAYS. OKAY, THIS SEEMS LIKE A RICH AREA TODAY. THESE OPENINGS OF PHONE CALLS, PROTOTYPE 2, DEVELOP AN ALGORITHM OVER A PERIOD OF TIME COULD LOOK AT OPENINGS OF PHONE CALLS AND SHOW DEVIATIONS FROM THAT BASELINE. THE ANSWER WAS YOU DEFINITELY COULD. A LOT HAPPENS IN THE OPENING OF A PHONE CALL. RECOGNITION OF THE OTHER PERSON, ALMOST ALL ASPECTS OF BRAIN FUNCTION HAPPEN IN A SPLIT SECOND IS EVERYTHING IS DOING WELL. THIS IS PROTOTYPE TWO, GETTING THE IRB TO APPROVE, IN THOSE DAYS PEOPLE WERE WORRIED ABOUT PRIVACY, LESS SO BECAUSE THE INTERNET HAD NOT TAKEN OFF. THAT WAS PROTOTYPE NUMBER 2. WHAT CAN WE DO IN THE WILD WITH THE EVERYDAY TECHNOLOGIES THAT ARE AROUND US THAT CAN ALLOW US TO START LOOKING AT PATTERNS FOR AN INDIVIDUAL OR SOCIAL UNIT LIKE LARGER THAN A FAMILY AND DEVIATIONS FROM THOSE, AND CAN YOU USE THAT KNOWLEDGE AND DATA BOTH TO HELP THE PEOPLE OVER TIME. BARBARA WENT FROM THE FIELD WORK HERE, MUCH YOUNGER PERSON WITH MY OWN COGNITIVE IMPAIRMENT AND DEMENTIA, ADVANCED TO ALZHEIMER'S QUICKLY AS IT OFTEN DOES WITH YOUNG DIAGNOSIS, SHE'S AFRAID OF NOT KNOWING WHO IS ON THE OTHER SIDE OF THE PHONE. ONE OF HER CHALLENGES AS HER HUSBAND WOULD SAY, HEY, WHEN SHE LOST HERSELF, LOST HER SOCIAL NETWORK BECAUSE THE PHONE BECAME THIS OPPORTUNITY TO EMBARRASS HERSELF AND NOT DISTINGUISH BETWEEN HER BEST FRIEND OF 30 YEARS OR HER DAUGHTER, AND A STRANGER CALLING. AT THAT POINT WE SAID, ALL RIGHT, WE'RE GOING TO DO SOMETHING PRETTY COMPELLING HERE. WE ACTUALLY -- IT WAS THAT SAME DUAL MODE OF TRYING TO SAY, CAN WE USE EVERYDAY TECHNOLOGIES TO COLLECT DATA IN THE WILD, IN THE MOMENT, IN SITU THAT'S GOING TO HELP THE PERSON AND COLLECT OVER PERIODS OF TIME TO SEE IF THERE'S DIAGNOSTIC OR SOME OTHER ASPECT THAT'S GOING TO BE HELPFUL. IN THIS CASE WE BUILT THIS SYSTEM, AND WE CALLED IT CALLER I.D. ON STEROIDS. IT WAS NOT THAT HARD ESPECIALLY AS PEOPLE WERE BECOMING MORE FRAIL, IN HER CASE SHE HAD MORE SOCIAL LIFE BECAUSE SHE WAS MUCH YOUNGER AND STILL IN HER CAREER DAYS BUT FOR A LOT OF OLDER PEOPLE THAT GET THIS THEIR UNIVERSE OF PEOPLE THEY TALK TO. WE BUILT THIS SCREEN, 16 YEARS AGO. IT'S EASY TO DO NOW, HARD TO DO THEN. BUILT THIS SCREEN, GOT PEOPLE TO FILL OUT A LITTLE BIT. WHEN A PHONE CALL CAME IN IT WAS CALLER I.D. ON STEROIDS. A PICTURE OF THE PERSON THAT WAS CALLING, WHAT YOUR RELATIONSHIP WAS WITH THEM, AND A SUMMARY OF WHAT YOU LAST SPOKE ABOUT WHEN YOU TALKED TO EACH OTHER THAT WE DIDN'T DO AUTOMATICALLY, NOW YOU COULD DO IT WITH SPEECH RECOGNITION. PEOPLE TOOK A FEW NOTES. IF THEY TOOK A FEW NOTES FOR BARBARA, THE NEXT CONVERSATION WOULD BE BETTER AND BARBARA FOUND OUT IF SHE TOOK A FEW NOTES THE NEXT CONVERSATION WOULD BE BETTER AND SHE COULD START OUT FAKING IT NOT REALLY KNOWING WHO THIS WAS BUT OFTEN THE NOTES AND CRIB SHEET WILL HELP HER GET INTO IT. THIS IS USING THAT DATA TO ACTUALLY HELP THE PERSON THEMSELVES TRYING TO MAINTAIN FUNCTION, ACTIVITIES OF DAILY LIVING. OVER TIME, ONE OF THE CHALLENGES WHEN I SHOWED UP AT HER HOUSE, THERE'S PEOPLE HERE, I'M GOING TO VISIT, I'LL BE BACK, DON'T WORRY, WHEN I SHOWED UP AT BARBARA'S HOUSE ON THE FIRST DAY -- THIS MIC MUST BE ON. I'M GOING BACK HERE. SORRY. OVER TIME, IT BECAME CLEAR AS I GOT TO HER HOUSE AND SHE WENT IN TO MAKE TEA FOR US ON THE FIRST DAY I COULDN'T REMEMBER WHETHER HER HUSBAND OR HER HAD BEEN DIAGNOSED. AND AS HE AND I ARE SITTING THERE, SHE WENT TO GET HIS TEA, 15 MINUTES GO BY, 20 MINUTES GO BY. HE SAYS, HEY, WHY DON'T WE GO IN THERE AND SEE IF SHE'S DOING OKAY. AT THAT MOMENT I KNEW, OKAY, SHE MUST BE THE ONE THAT'S HAVING COGNITIVE ISSUES. WE WALK IN, I'LL NEVER FORGET IT. SHE'S STARING AT HER CABINET, SHE KNOWS SHE WANTS TO MAKE TEA BUT SHE'S STUCK BECAUSE SHE CAN'T REMEMBER THE SEQUENCE OF HOW TO MAKE TEA. THIS INSPIRED A SET OF WORK WE TRIED TO DO AT INTEL 14 OR 15 YEARS AGO, PROTOTYPE NUMBER 3, REALLY HARD. I WOULD ARGUE EVEN WITH THE A.I. OF TODAY THIS WOULD STILL BE HARD. TEA-MAKING ASSISTANCE, PUT SENSORS IN THE HOME, JEFF IS WALKING IN, PARTNER AT OREGON HEALTH UNIVERSITY, TO HELP HER MAKE TEA. THE SENSORS WERE TRYING TO GUESS WHETHER OR NOT SHE WAS HAVING TROUBLE MAKING TEA BECAUSE YOU DON'T WANT TO INTERVENE IF SOMEBODY'S COGNITIVELY WITH IT. IT WOULD SAY, HEY, DO YOU WANT HELP NOW? THE IDEA WAS THE FAMILY WOULD SHOOT THESE VIDEO MAD LIBS OF HER WHEN SHE WAS FUNCTIONAL DOING THINGS LIKE MAKING TEA IN THAT KITCHEN, YOU COULD QUEUE UP VIDEOS. IT DID NOT WORK. TECHNICALLY IT WAS TOO DIFFICULT. SOME PLATFORMS THAT ARE OUT THERE TODAY, RESEARCH PLATFORMS AND PRODUCT PLATFORMS YOU COULD START TO DO THIS. I'M GOING TO SHOW YOU THE CONSEQUENCES OF THAT OVER TIME. WHAT I'M STARTING TO DO HERE BEFORE I TALK ABOUT THE "ALL OF US" RESEARCH PROGRAM, I WANT TO PLANT SOME SEEDS WITH YOU ABOUT SOME OF THE POINT-OF-CARE TECHNOLOGY THINGS WE TRIED TO DO OVER THE YEARS AND SOME LESSONS LEARNED FROM IT, BECAUSE I STILL, EVEN THOUGH THE TECHNOLOGY HAS GOTTEN BETTER, I STILL DON'T FEEL LIKE WE'RE DOING A GREAT JOB OF EMBEDDING INTO PEOPLE'S LIVES WHERE THERE'S ENOUGH OF A VALUE PROPOSITION FOR THEM SO YOU CAN GET BOTH THE IMMEDIATE AND LONG-TERM EFFECTS AND WE STILL ARE STRUGGLING TO HAVE A LARGE ENOUGH SAMPLE SIZE TO SEE WHETHER THAT DATA OVER A LONG PERIOD OF TIME IS GOING TO BE USEFUL IN SOME SORT OF DIAGNOSTIC SENSE, INTERVENTIONAL SENSE, OR SOME SORT OF -- WE COULD CALL THIS BEHAVIORAL. I HAVE HAD A LONG HISTORY OF DOING THESE KINDS OF THINGS. I'M GOING TO GO THROUGH A COUPLE MORE EXAMPLES HERE. POINT-OF-CARE TECHNOLOGIES IS A PHRASE I HATE, NO OFFENSE TO ANYBODY. BUT I NEVER LIKED IT. I DON'T LIKE mHEALTH EITHER. WHAT IS THAT? FOR ME, THESE HAVE ALWAYS BEEN PERSONAL HEALTH OR SORT OF POINT-OF-LIFE TECHNOLOGY, I CALL THEM PERSONAL HEALTH TECHNOLOGY, PERSONAL BECAUSE IT COULD BE IN YOUR SPECIAL SPACE, YOUR BODY, HOME, CAR. PERSONAL IN THE SENSE YOU'RE THE ONE OPERATING IT UNLESS IT'S SOME SORT OF EMBEDDED SYSTEM THAT SITS IN THE ENVIRONMENT BUT STILL IN YOUR PERSONAL SPACE. INCREASINGLY IT'S PERSONAL IN THE SENSE OF YOU BOUGHT IT, YOU PURCHASED IT, RIGHT? NOT ALWAYS THE CASE BUT THAT'S THE MIX WE'VE GOT. SO, THESE ARE SOME PROTOTYPES I'M SHOWING YOU PROTOTYPES AND THINGS. ONE OF THE FIRST THINGS I EVER DID AS A CANCER PATIENT, I HAD CANTER FOR 23 YEARS, STARTED AT AGE 19, I'M 49 NOW. I'M HEALTHIER NOW AT 49 THAN I WAS AT 19. I DID 23 YEARS OF WELL-INTENTIONED GUESS WORK CHEMOTHERAPY. 57 ROUNDS IN ALL. AND IT WAS NOT UNTIL I WAS SORT OF AT THE END OF MY ROPE, IF YOU WILL, I WAS RUNNING INTEL'S BUSINESS, WE HAD GONE TO A WHOLE GENOME SEQUENCING COMPANY, STILL VERY DIFFICULT. AT THAT TIME, THIS GUY REMEMBERED ME FROM SPEAKING AT A PATIENT CONFERENCE ON KIDNEYS. HE SAID, HEY, WHY DON'T WE DO A WHOLE GENOME SEQUENCE FOR YOU? BOTH KIDNEYS FAILED, I WAS ABOUT TO HAVE TOE START DIALYSIS, I COULD NOT STAY ON THE CHEMOTHERAPY I WAS ON ANYMORE. I THOUGHT, OKAY, THEY SAID I WAS GOING TO DIE AT 19, 20, 21, 22, EVERY YEAR UNTIL THE FIRST TEN YEARS, SHUT UP, DON'T GIVE ME ANYMORE PREDICTIVE ALGORITHMS WHEN I'M GOING TO DIE. IT WAS BLEAK. THEY SEQUENCED ME. I BARELY UNDERSTAND IT. IT'S TRUE, THE ARTICLE I SPOKE WITH IN "SCIENCE," REFERENCED EARLY FROM GEORGE, IT'S LIKE I'M NOT A GENETICIST, NOT A NEUROLOGIST, I'M A PATIENT. AND I'M A PERSON WHO HAS RUN ENTREPRENEURIAL ENTERPRISES TO HELP PEOPLE IN THE SOCIAL SCIENCES. I COME OUT OF THAT SITUATION, WHERE I DO THE SEQUENCE, I'M ABOUT TO START THE DIALYSIS, AND I FIND TO MY MEDICAL TEAM THEY HAVE BEEN TRYING TO USE THIS FILE AND ALL OF MY ELECTRONIC HEALTH RECORDS AND THEY DO THIS ANALYSIS, IT TAKES THREE MONTHS. I'VE HAD THE TRANSPLANT FOR SIX YEARS, ABOUT 6 1/2 YEARS AGO, MUCH HARDER TO SEQUENCE THE WHOLE GENOME AT THAT POINT. IF YOU ADD STREAMING, MOBILE POINT-OF-CARE DATA IT'S A DIFFERENT LEFT HOW DO WE ANALYZE. THEY SAID WE THINK MORE THAN 90% OF WHAT YOU EVER TOOK WAS DESTINED NEVER TO HAVE WORKED. THE GOOD NEWS IS WE THINK WE UNDERSTAND THE MECHANISM CAUSING YOUR CANCER, WE'RE SO BLINDED BY THE ORGANS THE CANCER HAPPENS TO BE IN WE'RE MISSING THE FUNDAMENTAL UNDERLYING MECHANISM IN MANY CASES. THAT'S WHAT A LOT OF PRECISION ONCOLOGISTS TEND TO DO NOW. I COME OUT OF THAT SITUATION, AND I'M CANCER FREE, AFTER THIS TWO ROUNDS OF DRUGS FOR PANCREATIC CANCER WHICH I DON'T HAVE, I'M ELIGIBLE FOR A TRANSPLANT, I GET BETTER AND I SAY, HEY, INTEL, WE'RE GOING TO GO BIG ON ANALYTICS FOR PRECISION HEALTH. MEANING COMBINING EHR, PERSONAL HEALTH TECHNOLOGY, ENVIRONMENTAL DATA, BIOLOGICAL DATA, ALL OF THAT. THEN ALONG COMES THIS "ALL OF US" RESEARCH PROGRAM. FOR THE FIRST SIX YEARS OF MY ILLNESS I DID NOT HAVE ACTUAL PHYSICAL PAIN, THE TUMORS HAD NOT GOTTEN LARGE ENOUGH TO PRESS ANYWHERE WHERE THERE WERE NERVES. I HAD TO TAKE THEIR WORD FOR IT. I COULD SEE SCANS AND TUMORS GROWING, I WOULD TAKE THEIR WORD FROM BLOOD WORK. WHEN I GOT PAIN I WAS GRATEFUL FOR IT BECAUSE IT JUSTIFIED THE HELL THAT I HAD BEEN PUT THROUGH BECAUSE IT'S LIKE, OH, THERE IS SOMETHING WRONG. IT HURTS, RIGHT? AFTER A WEEK OF THAT PAIN I WAS LIKE, LESSON LEARNED, IT COULD GO AWAY. I WAS ALWAYS OBSESSED WITH TRYING TO TAKE MY STEPS, CHEMO WOULD NAUSEATE THE HELL OUT OF ME PRE-ZOFRAN DAYS. IT PROBABLY SAVED MY LIFE. DEALING WITH NAUSEA WAS HUGE. WHAT I LEARNED, IF I COULD FORCE MYSELF TO GO GET EXERCISE AND STEPS EACH DAY, THE NAUSEA WAS GREATLY REDUCED. ANYBODY HAVE A SPORT BRAIN? YOU CAN GO BACK TO THE SLIDE REALLY QUICK. SPORT BRAIN, ONE OF THE FIRST PEDOMETERS YOU COULD COUNT YOUR STEPS, YOU WORE IT, IT LASTED ABOUT NINE HOURS WORTH OF BATTERY, PUT IT ON ITS DOCKING STATION, AND IT HAD LIKE A 300 BAUD MODUM THAT CONNECTED TO THE PHONE LINE, RIGHT BEFORE I WENT TO BED, YOU COULD HEAR IT SENDING THE DATA UP. IT WAS MOTIVATING ME TO GET MY STEMS. STEMS. STEPS. IF YOU GET TO 5,000 IT WILL HELP YOUR NAUSEA. I COLLECTED THIS DATA AND KEPT IT FOR YEARS. I STARTED TO NOTICE IN THE DATA THAT THERE WERE GAPS IN THE DATA WHERE IT WASN'T COUNTING WHEN I WAS MOVING WHEN I KNEW I HAD. THE LONG STORY SHORT ON THIS, OVER TIME, THIS DEVICE SORT OF BECAME A PAIN AND POSTURE DETECTION SYSTEM. MY GAIT AND MY BODY WOULD CHANGE BECAUSE I WAS IN PAIN IN SUCH A WAY EVEN THOUGH I WAS WALKING, IT WASN'T ACTUALLY PICKING UP THE STEPS. SO IT'S -- ITS INABILITY TO PICK UP STEPS WAS AN INTERESTING SIGNAL, A PAIN LOG, IF YOU WILL. I CHOOSE THIS EXAMPLE TO SAY, HEY, YOU NEVER KNOW. THIS IS WHY WE'VE GOT TO HAVE THE FAITH TO COLLECT DATA LONG BEFORE WE KNOW IT'S USEFUL AND IF IT'S SCIENTIFICALLY VALID. WE DON'T WANT TO OVERPROMISE, DON'T WANT DIGITAL SNAKE OIL BUT AT THE SAME TIME COLLECT THE DATA LONG ENOUGH TO SEE IF THERE'S SOMETHING THERE THAT YOU COULDN'T HAVE IMAGINED IN THE FIRST PLACE. LATER ON, WE ACTUALLY GAVE SPORT BRAINS TO SENIORS LIVING IN TWO FACILITIES, TRYING TO MOTIVATE EACH INDIVIDUAL TO TAKE THEIR STEMS. STEPS. THESE ARE MOSTLY WOMEN IN LONG-TERM FACILITIES BECAUSE THEY LIVE LONGER. IT WASN'T WORKING. THEY ARE MORE COLLECTIVELY THAN INDIVIDUAL COMPETITION. WE PUT A TV AT THE END OF THE HALLWAY AND THEY COULD LOOK AT THEIR OWN INDIVIDUAL DATA BUT THE AGGREGATE DATA DROVE THEM. THEY BECAME LIKE NAZI WALKERS. GLADYS, WE GOT TO GO WALK BECAUSE WE'RE NOT -- OUR HALLWAY IS NOT GOING TO WIN THE ICE CREAM SOCIAL OF TRYING TO GET 200,000 STEPS TOGETHER. WE GET SO FOCUSED ON TECH KNOWLEDGE BUT THE INTERFACE WITH HUMANS IS MORE COMPLICATE AND WE GIVE TOO MUCH SHORT SHRIFT AND WE THROW THE BABY OUT WITH THE BATH WATER. THIS IS JEFF KAY'S WORK AT OREGON HEALTH SCIENCE UNIVERSITY. THIS IS AN EXAMPLE YOU THINK ABOUT TRYING TO COLLECT SENSOR DATA TO MONITOR ACTIVITIES OF DAILY LIVING, HOW CAN YOU DO PREDICTIVE OR PREVENTIVE -- LET'S SEE THE UTI IN THE DATA OF MOVEMENT AROUND THE HOME OVER PERIODS OF TIME THAT SUGGEST IT'S THERE BEFORE IT BECOMES AND EMERGENCY. HE'S DONE GREAT WORK AND THEY HAVE THE PROGRAM NOW WITH NIA, CALLED CART, TO START TO SCALE THAT UP. WE HAD PROBLEMS IN THE EARLY DAYS, AS RECENTLY AS LAST YEAR, WE COULD NEVER GET STUDIES POWERED LAUNCH ENOUGH AND THE INFRASTRUCTURE IN PLACE LARGE ENOUGH TO SEE VALUE TO PEOPLE AND FAMILIES AS WELL AS POTENTIAL RESEARCH AND CLINICAL VALUE. WE USED SOME OF THE SAME WORK AT INTEL UP IN THE UNIVERSITY OF WASHINGTON IN AN ENVIRONMENT LIKE -- WASN'T HOME CARE SETTING, MUST HAVE BEEN ASSISTED OR NURSING CARE. AT THE SAME TIME DOING STUDIES OF SENIORS, WOULD FOLLOW SENIORS TO SEE WHAT WAS GOING ON IN CLINICAL ENVIRONMENTS, STUDIES OF NURSES AND OTHERS. WE WOULD SEE IN PARTICULAR IN THE CASE OF LONG-TERM CARE THERE'S SO MUCH DOCUMENTATION NURSES NEED TO DO THAT, YOU KNOW, THEY WERE BASICALLY MAKING UP THEIR DATA AT THE END OF THE DAY. NOT BECAUSE THEY ARE BAD PEOPLE. THEY HAVE 12 SENIORS THEY ARE TRYING TO TAKE CARE OF AT THE SAME TIME OVER THE COURSE OF THE DAY, AT BEST THEY HAD STICKY NOTES CAPTURING. THIS MATTERED FOR REIMBURSEMENT. THEY WERE UNDERREPORTING AMOUNT OF CAREGIVING OVER THE DAY BY AROUND 30 TO 40%. BECAUSE THEY CAN'T EVEN REMEMBER THAT, YOU KNOW, ALL MORNING THEY DID THIS WITH THESE FOUR PEOPLE AND THEN SOMEBODY HAD A HEART ATTACK OR SCARY EVENT AND THAT WIPED IT FROM THEIR MEMORY. THEY WERE DOING THIS END OF THE DAY DATA DUMP WITH STICKY NOTES INTO THE SYSTEMS FOR BOTH MEDICAL RECORDS TRACKING AS WELL AS FINANCIAL TRACKING. SO WHAT WE DID WAS TAKE SOME OF THESE CRUDE SENSOR TECHNOLOGIES AT THAT POINT, PUT IT IN THERE AND TRIED TO CREATE AN AUTOMATED FORM. AND IT WAS REALLY INTERESTING. BECAUSE AS THEY DID THIS, THEY WERE LIKE, WOW, THE ATTEMPT TO FILL OUT THE FORM THE FIRST TIME BASED ON CARE THAT I ACTUALLY DID, BECAUSE YOU GOT SOME CRUDE PROXIES OF HOW MANY PEOPLE'S ROOMS WAS I IN, AND WHAT THEIR ACTIVITIES OF DAILY LIVING THEY COULD DO, EVEN WITH CRUDE PROXIES WE HAVE IT CUED THEIR MEMORY TO BE ABLE TO FIX THE FORM AND THEN TURN IT IN. A LITTLE SIDE NOTE ON THIS IS WE TRIED TO GET THIS SCALED UP AND STARTED TO THINK ABOUT NIH AND OTHER PLACES AND DUAL ELIGIBLE, MEDICARE AND MEDICAID, HOW CAN WE USE THEM. MEDICARE GOT WORRIED. IF ALL THESE PEOPLE ARE UNDERREPORTING CARE AND YOU GIVE THEM THE MEANS WE'RE GOING TO HAVE TO PAY THESE PROVIDERS A WHOLE LOT MORE MONEY. RIGHT? IT'S LIKE OH MY GOSH, WE DON'T WANT TO KNOW THIS, RIGHT? BE CAREFUL WHAT YOU ASK FOR IN TERMS OF THE DATA. AGAIN, PART OF THE POINT I'M TRYING TO MAKE HERE IN ADDITION TO HOW DO WE SCALE AND LET THEM EVOLVE, THE USES OF THE DATA IS MUCH MORE THAN YOU INITIALLY START OUT WITH. YOU START OUT WITH A PARTICULAR HYPOTHESIS OF WHO THIS IS GOING TO BE VALUABLE FOR AND SOMETIMES YOU'RE RIGHT AND WRONG YOU ABOUT OFTEN IT MOVES ELSEWHERE. I WAS GOING TO SHOW THE VIDEO OF GLADYS. I WON'T DO THAT RIGHT NOW. WE DID WORK WITH THE MICHAEL J. FOX FOUNDATION AND ANDY GROVE WHO CO-FOUNDED INTEL AND HAD PARKINSON'S, TRYING TO CREATE A PLATFORM FOR OTHERS. WE CON CONVENED EXPERTS. IF HAD YOU YOUR TECHNOLOGY, TO MONITOR DISEASE PROGRESSION, BECAUSE ONE OF THE CHALLENGES OF PARKINSON'S, NEUROLOGIST FRIENDS CAN TELL US, THERE'S NOT ENOUGH VISITS, AND THE INFREQUENCY WITH WHICH THEY ARE MONITORED, THE VARIABILITY OF WHEN THEY COME IN FOR THEIR SIX-MONTHS OR TWELVE-MONTH VISIT IT MIGHT OR MIGHT NOT REPRESENT WHAT'S ACTUALLY GOING IN THEIR DAILY LIVES. EVERYBODY KNEW THIS. DID MY MIC DIE? SOMETHING SOUNDS DIFFERENT TO ME. IN THIS CASE WE BROUGHT PEOPLE TOGETHER AND SAID WHAT WOULD BE YOUR FAVORITE TECHNOLOGY? SOME WANTED TO DO PURDUE PEGBOARD TEST, WE COULD CAPTURE A LOT MORE DATA ABOUT THE MOVEMENT FROM THE LEFT SIDE TO THE RIGHT SIDE. SOMEBODY WITH PARKINSON'S TAKES A LOT LONGER. A WATCH YOU COULD WEAR ALL THE TIME TO MEASURE A TREMOR. AND THEN THERE WERE THESE MINI KEYBOARDS IN THE FRONT, QUANTITATIVE DIGITTOGRAPHY. WE CAN DO A LOT IN 90 OR 60 SECONDS, YOU'VE GOT ADVANCED PARKINSON'S PATIENTS WHO MIGHT NOT GET ANY OR HAVE A MUCH SLOWER AMOUNT. YOU'RE TRYING TO LOOK AT DISEASE PROGRESSION. AND THEN THE OTHER PIECE WAS A PHONATION TEST, MICROPHONE, MADONNA HEAD SET THAT LOOKED LIKE YOU WERE ABOUT TO GIVE A CONCERT AT MADISON SQUARE GARDEN, THE AMOUNT OF ENERGY IN THE VOICE AND OTHER ASPECTS, CHANGING OVER TIME. WHAT WAS INTERESTING, A LOT OF THESE PIECES ENDED UP IN SOME CASES BECOMING PRODUCTS OR RESEARCH PLATFORMS BUT WHAT WAS INTERESTING WHEN WE DID IT, WE WOULD NOT INITIALLY LET THE PARKINSON'S PATIENTS AND FAMILIES HAVE DATA. P.I.s WERE LIKE, NO, THEY CAN'T HAVE THE DATA. WHAT WE FOUND WHEN WE WENT AND OBSERVED WHAT WAS GOING ON THEY WOULD OFTEN HAVE SPOUSE OR DAUGHTER OR SOMEBODY WITH STOP WATCHES KEEPING A LOG. CAN WE JUST MAKE IT EASY AND GIVE THEM THE DAMN DATA? OVER TIME, I KNOW ANDY DID THIS HIMSELF, SOME OF THEIR PHYSICIANS BECAME VERY INTERESTED IN USING THIS DATA TO HELP TITRATE THEIR DRUGS. SO THAT WAS SOMETHING THAT HAPPENED OUT OF IT UNOFFICIALLY. BUT THESE DOCTORS WERE SUDDENLY GETTING SOME DATA THAT HELPED THEM KNOW IT'S LIKE YOU DON'T -- YOU KNOW, YOU'RE DOPA DOSES ARE GOING TO CHANGE BASED ON THE DATA IN REAL TIME. SOME PEOPLE WITH PARKINSON'S COULD USE THAT DATA, WE SAW THIS IN THINGS WITH FAMILY DEALING WITH COGNITIVE DECLINE, THEY COULD USE THIS DATA TO PINPOINT TIMES IN THE DATE, WEEK OR MONTH WHERE IT SEEMED WERE REGULAR AND LIKELY THAT MOM WAS AT HER MOST FUNCTION, RIGHT? HEY, SO ANDY WOULD USE THIS TO SAY, HEY, HE DID KICKBOXING, ONE OF THE WAYS HE SURVIVED FOR SO LONG, HE NEEDED TO FIND OUT WHEN HE WAS MOST PHYSICALLY ABLE TO GO KICKBOXING. THE SYSTEM GAVE BACK TO HIM THESE ARE THE SWEET SPOTS, THE EQUIVALENT WITH COGNITIVE DECLINE, CAN YOU FIND WINDOWS OF MAXIMUM COGNITION WHERE IF THEY ARE STILL TRYING TO PAY THEIR BILLS THAT'S WHEN THEY DO IT, RIGHT? SO THEY CAN, AGAIN, TRY TO MAINTAIN THAT, MAINTAIN PEOPLE'S DIGNITY TRYING TO HELP THEM CONTINUE TO DO THOSE ACTIVITIES. ALL RIGHT. I'M GOING TO SKIP OVER A COUPLE MORE OF THESE. I COULD TALK FOREVER. THIS WAS THE DANGER. I'LL POINT OUT ONE THAT I USED SOMEWHAT RECENTLY. IN THE OTHER SIDE OF MY KIDNEY TRANSPLANT SIX YEARS AGO, IT'S LIKE THE WHOLE REST OF MY CARE, SO MANY CHEMOTHERAPIES WHERE IT WOULD WIPE OUT YOUR IMMUNE SYSTEM AND GIVE YOU A LIST OF PLACES NOT TO GO. AT THE TOP OF THE LIST WAS THE HOSPITAL AND LIKE TOYS R US AND PUBLIC LIBRARY WERE SECOND AND& THIRD. REALLY? YOU HAVE TO COME BACK FOR THIS. WELL, SAME THING WHEN YOU GET A KIDNEY TRANSPLANT, THEY WIPE OUT YOUR IMMUNE SYSTEM SO YOUR BODY DOESN'T REJECT THE KIDNEY, TAPERS FOR SIX WEEKS. GUYS, WHY ARE YOU MAKING ME COME IN? WE CAN COLLECT THIS DATA ON THE EDGE. I FREAKED THEM OUT. I DID A TED TALK, THIS IS US REHEARSING FOR THE TED TALK WITH MY TRANSPLANT NEPHROLOGIST. HE NEVER TOUCHED A CELL PHONE-CONNECTED ULTRASOUND BEFORE. AND HE KIND OF KNEW THEY EXISTED AND HE AND THE OTHER DOCTORS IN HIS CLINIC WERE LIKE, OH, IT'S A TOY. IT WILL NOT COLLECT ENOUGH DATA, YOU KNOW, IMAGE QUALITY WON'T BE GOOD OF YOU IN. HERE I AM SAYING -- GOOD ENOUGH. I NEED YOU TO SHOW ME SO I CAN TALK ABOUT THIS ON STAGE WITH TED. HE WAS ENAMORDER, I'M E-- ENORMORRED, I'M GOING TO BE IN A TED TALK? I'M SURE THAT WAS IT. IT'S HARD TO SEE IT. AS HE STARTED TO DO THIS, THESE ARE AS GOOD A QUALITY AS WHAT WE HAD TWO YEARS AGO IN LARGE PIECES OF EQUIPMENT. CHANGE. DO YOU KNOW YET IF THERE'S TECHNOLOGY TO DO A QUICK BLOOD DRAW OR HARDER ONE WAS GETTING A URINALYSIS DONE IN A QUICK WAY, WE WERE PUSHING THE EDGE TRYING TO SAY HOW CAN WE SHIFT THE CARE FROM A HOSPITAL-CENTRIC MODEL WHERE IT'S EXPENSIVE AND DANGEROUS IN THIS PARTICULAR CASE TO A DISTRIBUTED MODEL OF CARE. AND THAT -- I COULD TALK FOR FIVE HOURS ABOUT ALL THE ATTEMPTS I'VE HAD TO DO THAT. ALL THE WORK AT INTEL AND WITH OTHER COMPANIES TO DO HOSPITAL AT HOME MODELS WHERE WE SHOWED YOU COULD -- 65% OF MORE OF WHAT'S DONE IN HOSPITALS COULD BE DONE SAFELY IN A HOME ENVIRONMENT WITH MOBILE POINT POINT OF CARE TECHNOLOGIES AND TRAINING. I WAS USING THIS FOR GERM AVOIDANCE, AND PAIN AVOIDANCE. WE LIFT 50 MINUTES, COULD BE AN HOUR-AND-A-HALF FROM THE DOWNTOWN HOSPITAL. WE LIVE A RURAL PROPERTY WITH A MASSIVE ROAD LIKE A ROLLER COASTER. IT HURT SO MUCH TO BE IN THE DRIVE TO GO THERE. OVER TIME IT PROVIDED CONFIDENCE FOR ME AND MY DOCTOR THAT THINGS WERE OKAY IN THAT REMOTE OKAYNESS CHECKING KIND OF WAY. IT WAS VERY POWERFUL. WHAT I PUT HERE AS A REMINDER, PEOPLE DON'T KNOW WHAT TECHNOLOGY CAN AND CANNOT DO. WE HAVE TO HELP THEM IMAGINE THE POTENTIAL OF IT. I THINK THE FIRST TIME I MET JEFF WE HAD THIS CONFERENCE, NEUROLOGISTS AND ALZHEIMER'S EXPERTS WITH TECHNOLOGY AND SENSOR PEOPLE, AND THAT WAS THE MAGIC, RIGHT? TECHNOLOGY AND SENSOR PEOPLE COULD SAY, WELL, THAT'S DOABLE. OH, THAT'S NOT DOABLE. IT COULD OPEN THE THINKING OF WHAT KIND OF DATA COULD YOU COLLECT FOR RESEARCH OR CLINICAL PURPOSES AND AT THE SAME TIME THERE WERE PROBLEMS THAT CLINICAL PEOPLE WANTED TO NOTICE THINGS, WE HAD NO IDEA ANYBODY WOULD WANT TO NOTICE THAT. OH, WE'VE GOT A TECHNOLOGY THAT CAN DO THAT. WE'VE GOT TO CONTINUE TO MAKE INTERACTIONS MULTI-DISCIPLINARY. ACROSS THESE WHAT'S MY TAKEAWAY, RIGHT? THERE'S MORE I COULD SAY. AS I LOOK ACROSS PROTOTYPES AND RESEARCH PLATFORMS AND SOMETIMES PRODUCTS WE CREATED, WHAT WE THOUGHT TECHNOLOGY WOULD BE GOOD FOR WAS OFTEN NOT WHAT OTHERS FOUND IT COULD BE GOOD FOR. DON'T BE SORT OF TOO -- DON'T MAKE STRONG ASSUMPTIONS. GIVE DATA APPS, DATA FOR ME. THIS ROUTINELY HAPPENED. AT THE START OF STUDIES SENIORS AND FAMILIES WERE NOT INTERESTED IN DATA. THEY DID NOT -- THEY WEREN'T WE CANNOT CONTINUE TO BE PATRONIZING, AN ENORMOUS CHALLENGE IN THE "ALL OF US" PROGRAM. EMBEDDED ASSESSMENT IN THEIR EVERYDAY LIFE IS MUCH MORE POWERFUL PARADIGM THAN SOMETHING I HAVE TO GO INTERACT WITH AS A PATIENT OR A PERSON IN MY HOME . THE SWEET SPOT WAS WHEN THE PATIENT, FAMILY AND STAFF COULD BENEFIT FROM UNDERLYING TECHNOLOGY OFTEN IF YOU DID DESIGN WITH ALL OF THOSE PLAYERS IN MIND AND AT THE TABLE HELPING YOU INVENT THE TECHNOLOGIES YOU WERE DOING. I WILL TELL YOU THIS IS STILL, PRIVACY CONCERNS CARRY AS MUCH AS OPINIONS PEOPLE HAVE ABOUT THINGS. NO ONE SIZE FITS ALL APPROACH TO PRIVACY, CONCERNS ARE DIFFERENT DEPENDING ON SOCIOECONOMIC STATUS, PERSONAL PREFERENCES, ON WHETHER YOU'VE COME FROM THE UNITED STATES OR YOUR ORIENTATION TOWARDS GOVERNMENT, IT'S A MUCH MORE COMPLICATED THING THAN OUR POLICY AND RESEARCH TREAT. WE'VE GOT TO FIGURE OUT HOW TO DO PRECISION PRIVACY SETTINGS AS WE ENABLE PRECISION MEDICINE. THE BIGGEST CHALLENGES FOR THESE, IT'S BEEN 120 120 -- 20 YEARS, SEEING THE ECONOMIC VALUE OF THE TECHNOLOGY. BOTH IN TIME AND IN NUMBERS. RIGHT? YOU'D HAVE SMALL PILOTS. GOSH, I REMEMBER WHEN -- I AM A GOVERNMENT EMPLOYEE, NIGHT TO BE CAREFUL HERE. I REMEMBER WHEN OTHER GOVERNMENT AGENCIES WERE DOING PILOTS ON TELEHEALTH, IT WOULD BE QUICK PILOTS THAT LASTED ABOUT FOUR MONTHS. IT'S LIKE, NO DOCTOR HAS TIME TO INTERNALIZE A NATURAL WORK FLOW AROUND A NEW TECHNOLOGY WHEN YOU'VE ASKED THEM TO PILOT SOMETHING ON TOP OF THEIR ALREADY BUSY DAY AND FIGURED OUT A WAY TO REWARD THEM AND GIVE THEM A WAY TO INTERNALIZE IT. TELEHEALTH DOESN'T WORK, RIGHT? THIS IS CRAZY. WE NEED LONGER STUDIES AND MORE DEEPLY POWERED STUDIES. THE SECOND, THIS IS STILL A NIGHTMARE, HAVING A STABLE BUT CONFIGURABLE RESEARCH PLATFORM OF POINT-OF-CARE TECHNOLOGIES. WE'RE GOING TO HAVE THIS PROBLEM IN "ALL OF US." WE PROMISED TO DO A MILLION WEARABLES. I DON'T KNOW WHAT WE'LL DO. I'LL TALK MORE ABOUT THAT IN A MINUTE. IS IT -- TECHNOLOGY IS CHANGING SO FAST BUT WE NEED COMPARABILITY OVER A LONG PERIODS OF TIME, HOW ARE WE GOING TO SOLVE THE PROBLEMS? LET ME SEE WHERE WE ARE. I'M GOING TO GO THROUGH THE PROGRAM AND I'LL OPEN IT UP FOR QUESTIONS. THIS IS THE CONTEXT IN WHICH THE "ALL OF US" RESEARCH PROGRAM COMES IN AS WELL AS MANY OTHERS. THE PURPOSE OF THIS PROGRAM PREVIOUSLY CALLED THE MILLION COHORT PROGRAM IS TO ACCELERATE HEALTH RESEARCH AND BREAKTHROUGHS THAT ENABLE INDIVIDUALIZED PREVENTION TREATMENT AND CARE FOR ALL OF US. THOSE ARE A BUNCH OF LOADED WORDS BUT IN PARTICULAR THIS IS NOT JUST ABOUT BETTER DRUGS. IT WILL BE A HUGE OUTCOME BUT IF WE DON'T FIGURE OUT PRECISION BEHAVIOR CHANGE, PRECISION PREVENTION, WE WILL HAVE FAILED IN OUR MISSION. YES, WE WILL ENABLE PHARMACOGENOMICS AND MORE RESEARCH TO MAKE DISCOVERIES AROUND IT, IF YOU HAVE THAT VARIANT IN YOUR GENE DON'T TAKE THAT DRUG OR DO TAKE THAT DRUG BUT IT'S MUCH MORE THAN THAT. TO DO THIS OUR STRATEGIC OBJECTIVES, WE'VE GOT TO NURTURE RELATIONSHIPS WITH A MILLION OR MORE PEOPLE PARTICIPANT PARTNERS IN OUR PROGRAM FROM ALL WALKS OF LIFE FOR DECADES, ONE OF THE MOST DIVERSE COHORTS EVER CREATED, IF NOT THE MOST DIVERSE. WE ARE GOING OUT OF OUR WAY TO OVERREPRESENT -- OR OVERRECRUIT THOSE THAT HAVE BEEN UNDERREPRESENTED BY RESEARCH, HARMED BY TUSKEGEE OR GOVERNMENT STUDIES DONE DO THEM, NOT WITH THEM, IN THE PAST. THEY HAVE REASONS TO BE SKEPTICAL AND BUILDING THAT RELATIONSHIP WHERE THEY ARE HELPING DEFINE WHAT WE'RE GOING TO DO, THEY ARE GOING TO GET VALUE FROM THE PROGRAM OVER TIME BECAUSE WE'RE PLANNING THE FIRST TEN YEARS BUT THIS IS A 60 TO 75 OR LONGER YEAR STUDY. WE NEED TO SEE UNFOLDING OF HEALTH AND ABSENCE THEREOF OVER A LONG PERIOD OF TIME COLLECTING RICH DATA TYPES THAT LOOK AT THE MASH-UP OF CLINICAL, ENVIRONMENTAL DATA, WHAT MATTERS MOST AND HOW DO WE USE DATA TIMES FOR PRECISION THERAPY FOR SOMEBODY, OR INTERVENTION. IF WE DO THIS WE THINK WE'LL DELIVER WHAT PROBABLY WILL BE THE LARGEST RICHEST BIOMEDICAL DATASET EVER, AND WE'VE GOT TO MAKE THIS EASY, SAFE AND FREE FOR PEOPLE TO USE. IT CAN'T JUST THROW THE DATA OUT THERE. WE'VE GOT TO CLEAN IT, CURATE IT, PUT CURRICULUMS IN PLACE SO EVEN HIGH SCHOOLS AND OTHERS CAN USE IT. JUST THE TIER 1 ACADEMICS GET THIS WHO ALREADY HAVE THESE CAPABILITIES, WE'LL HAVE FAILED. WE'VE GOT TO PUT MORE BRAINPOWER PER PROBLEM. THERE'S THE IF WE BUILD IT WILL THEY COME? WE'VE GOT TO CATALYZE AND ECOSYSTEM OF FUNDERS AND RESEARCHERS HUNGRY TO DO THE RESEARCH. WE'LL DO SOME BUT IT'S A RESOURCE FOR THOUSANDS AND THOUSANDS OF OTHER STUDIES, WE NEED TO MAKE SURE THAT HAPPENS. IT'S A RICH LONGITUDINAL STUDY, A MILLION OR MORE PEOPLE, 60 YEARS OR PLUS, DIVERSITY OF PARTICIPANTS AND RESEARCHERS. TWO PRIMARY WAYS INTO IT. ONE WE CALL THE DIRECT VOLUNTEER PATH, ONE WE CALL HEALTH PROVIDER ORGANIZATION PATH. WE HAVE A NETWORK OF HEALTH PROVIDER ORGANIZATIONS FROM LIKE SMALL FEDERALLY QUALIFIED HEALTH CENTERS AND BORDER OF SAN DIEGO AND MEXICO, ALL THE WAY TO THE V.A., RECRUITING THEM AND THEIR FAMILIES. TRADITIONAL ROUTE. THE GRAND EXPERIMENT IS DIRECT VOLUNTEER CAPACITY. THIS IS THE LIST EVER CURRENT CONSORTIA MEMBERS, A THOUSAND PEOPLE ACROSS THESE DIFFERENT ORGANIZATIONS. AT THE TOP ARE FOLKS WHO CAME TOGETHER TO BUILD THEY DIRECT VOLUNTEER NETWORK. RAISE YOUR HAND, CALL A 1-800 NUMBER, CLICK ONEN A APP AND JOIN THE STUDY. YOU NOT BE ASSOCIATED WITH AN ASSOCIATION LET ALONE SOMEBODY IN OUR NETWORK THAT'S GOING TO HELP YOU GET YOUR EHR DATA AND DO YOUR BLOOD DRAWS AND SPECIMENS. IT'S BASICALLY CONSENT, CONSENT TO SHARE YOUR EHR DATA, BROAD CONSENT, CONSENT TO SHARE YOUR EHR DATA, AND VERSION ONE OF THE PROTOCOL, THREE INITIAL SURVEYS THAT MANY MORE ARE COMING, THEN A BLOOD DRAW, URINE CAPTURE, SIMPLE PHYSICAL MEASUREMENTS, BMI, HEIGHT, WEIGHT. THE WHOLE PROTOCOL IS ONLINE AND YOU'LL SEE DETAILS. THIS DIRECT VOLUNTEER PARTNERS, FOLKS LIKE WALGREEN'S AND EMSI -- EMSI DOES IN-HOME EVALUATIONS AND PHYSICALS AND BLOOD DRAWS AND THINGS FOR ALMOST EVERY INSURANCE COMPANY. AMONGST THOSE PARTNERS WE HAVE THE ABILITY, CONCEPTUAL ABILITY, TO REACH WHERE MORE THAN -- IT'S LIKE 95% OF EVERY PERSON IN THE UNITED STATES LIVES WITHIN 20 TO 45 MINUTES. THERE'S TWO PROBLEMS WITH THAT. I CAN'T AFFORD TO KEEP ALL OF THAT CAPACITY ON, ALL OF THE TIME. AND THE OTHER CHALLENGE IS WE HAVE TO BE SELECTIVE, EMSI CAN GO IN THE HOME, WE CAN'T DO THAT FOR A MILLION PEOPLE, CAN'T AFFORD THAT, RIGHT? WE HAVE THE POTENTIAL WITH US. VERY DISRUPTIVE, I HOME MY TOMBSTONE SAYS HERE LIES ERIC, HE HELPED GET ERIC, HE HELPED GET RID OF HOSPITALS AS WE KNOW THEM. AND FROM A RESEARCH PERSPECTIVE, HOW DO WE USE TECHNOLOGIES THAT WE HAVE TO DISTRIBUTE THE RESEARCH CAPACITY OUT INTO THE WORLD, NOT PEOPLE THAT HAPPEN TO BE IN THE NEARBY ORBIT AROUND AN ACADEMIC MEDICAL CENTER AND THIS IS A VERY DISRUPTIVE THING IF WE CAN ACTUALLY MAKE IT WORK, AND KNOW WE CAN GET QUALITY SAMPLES AROUND THERE. THERE'S A SET OF COMMUNITY PARTNERS. YOU'LL NOT GOING TO HAVE A RELATIONSHIP WITH WALGREEN'S. THEY WILL DO YOUR BLOOD DRAW AND PHYSICAL MEASUREMENTS. WE'RE MAKING AWARDS TO COMMUNITY PARTNERS, NOT FOR PROFITS SMALL, TO LARGE, THE FACE OF THE PROGRAM, WE DON'T HAVE AN HPO HEALTH PROVIDER ORGANIZATION TO BUILD THAT RELATIONSHIP. IT'S GOING TO BE AN ENORMOUS CHALLENGE TO DO THAT. THE OTHER THING I'LL MENTION IN THE INTEREST OF THIS CONFERENCE -- WHERE ARE THEY? THE AWARD TO BUILD OUT OUR PLAN FOR POINT-OF-CARE TECHNOLOGIES AND WEARABLES AND SO FORTH AN AWARD THAT WENT TO SCRIPPS, ERIC TOPEL'S TEAM IN LA JOLLA. IN ADDITION TO BUILDING THIS DIRECT CAPABILITY TO BUILD THE PLAN FOR THAT. THIS WAS VERSION 1 OF THE PROTOCOL. YOU'LL GET THESE SLIDES. THERE'S MORE DEPTH IN THE BACK OF THIS. WHERE WE ARE RIGHT NOW WE'RE IN A CLOSED BETA PHASE. I THINK I CAN'T REMEMBER THE NUMBERS, WE'RE GETTING CLOSE TO 8,000 PEOPLE WHO HAVE COME THROUGH, SOME POINT IN THE PROCESS, AND OVER 5500 THIS WEEK WHO HAVE DONE THE FULL PROTOCOL THIS FAR. 70 SITES ARE UP AND RUNNING OUT OF 110 WE NEED IN PLACE, IN EXPANDED BETA, ADDING COMMUNITY ORGANIZATIONS AND ADDING MORE BASICALLY BIOBANK CAPACITY AS WE GET READY FOR NATIONAL LAUNCH WHICH WE ARE TARGETING IN THE SPRING. AND, YOU KNOW, IT'S A LOT TO SET UP BUT IT'S ALL WORKING PRETTY WELL SO FAR ON TOP OF THIS. WE'RE NOT DOING MUCH WITH WEARABLES OUT OF THE GATE. HERE'S A PARTICIPANT CENTER, I MENTIONED THAT. THERE'S AN ANNOUNCEMENT THAT CAME OUT YESTERDAY. THE FIRST WEARABLE IS GOING TO BE A BYOD STRATEGY, BRING YOUR OWN DEVICE. NOT EVERYBODY IN THE MILLION WILL HAVE THOSE DEVICES BUT JUST TO START OUT WE'LL INVITE PEOPLE WHO HAVE A DIFFERENT SMARTPHONE OR APP AND WE'LL WORK WITH THOSE VENDORS TO GET THE APIs GOING AND FIGURE OUT HOW TO STORE THE DATA AND ALL OF THAT. WE'LL START WITH THAT. I BELIEVE WHAT WE WILL END UP HAVING TO DO, I'D LOVE YOUR POINT OF VIEW ON THIS OVER TIME, IS THAT WE'RE GOING TO HAVING TO PUT OUT A SPEC FOR WHAT WE ULTIMATELY WANT TO CAPTURE AND THEN GET INDUSTRY TO BUILD SOMETHING FOR US, AND AT LEAST WE WON'T JUST BE A STUDY OF 500 PEOPLE. WE'LL BE A STUDY OF A MILLION AND CAN HOPEFULLY GET SOMETHING IN A COST AND SCALE WE CAN MAKE CONSISTENT AMONGST THOSE. WE'LL HAVE THE PROBLEMS YOU DEAL WITH ALL THE TIME. TECHNOLOGY IS CHANGING, WE STILL NEED TO KEEP COLLECTING SOME OF THAT OR DO THE ANALYSIS TO SAY WHEN ARE WE GOING TO USE A BETTER SENSOR THAN THE ONE FOR THE FIRST FIVE OR TEN YEARS. I'LL END THERE AND INVITE COMMENT ALSO. I'M TYING TO MASH UP TWO WORLDS. SO MANY OF ARE YOU WORKING ON POINT OFCARE TECHNOLOGIES, YOU WANT YOU TO LEARN FROM OUR HUNCHES, WE'RE SERIOUS ABOUT INCLUDING THIS IN "ALL OF US" BUT HAVE TO FOCUS ON THE FIRST THINGS FIRST, GET THE BASICS UP AND RUNNING. YOU CAN IMAGINE CHALLENGES OF THIS SCALE, JOINALLOFUS.ORG IS THE WEBSITE. YOU'LL GET TO A POINT WHERE IT SAYS YOU HAVE TO HAVE A CODE, UNLESS YOU'RE ASSOCIATED WITH A HEALTH PROVIDER ORGANIZATIONS OR CITIES THAT ARE DOING THE DIRECT VOLUNTEER ROLLOUTS, YOU'LL HAVE TO WAIT TILL SPRING AND THAT WILL OPEN UP AT THAT POINT. ALL OF US.NIH.GOV HAS MORE INFORMATION. THAT'S OUR RESEARCHER WEBSITE AND THE OTHER IS THE ENROLLMENT WEBSITE. THERE'S A LOT OF CROSS-INFORMATION. IF I LEFT TIME FOR QUESTIONS LET'S GO FOR IT. [APPLAUSE] >> WHAT I WOULD LIKE TO SUGGEST IS THAT WE HAVE ABOUT TEN MINUTES FOR QUESTIONS. PLEASE DO YOUR BEST TO MAKE YOUR QUESTION VERY BRIEF AND WE'LL GET A BRIEF RESPONSE SO WE CAN REACH AS MANY PEOPLE AS POSSIBLE. ANY QUESTIONS THAT ANYONE HAS? >> DON'T BE SHY. OR CRITIQUES OR ANYTHING. >> ERIC, I DON'T RECALL ON THE LAST SLIDE THAT HAD ALL THE PARTNERS AND COLLABORATORS, I DON'T PARTICULARLY REMEMBER SEEING A SECTION OF CORPORATIONS LIKE INTEL AND GOOGLE. WHAT'S THE PLAN, A COLLECTIVE TO HAVE THEM AS A GROUP. >> YEAH, WE GET ADVICE FROM A LOT OF THOSE CORPORATIONS BUT IN TERMS OF HAVING A SPECIFIC PROGRAM WE DON'T HAVE IT IN PLACE YET. FROM PHARMA TO HIGH TECH COMPANIES, THEY ARE APPROACHING US SAYING, HEY, WE WANT TO PARTNER. WE MAY DONATE EQUIPMENT. YOU KNOW, AND IN SOME CASES WE WANT YOU TO DO WHOLE GENOME SEQUENCES OR WEARABLES FASTER, IS THERE A WAY WE CAN DONATE? WE'RE TRYING TO SET UP ALL OF THAT INFRASTRUCTURE SO THAT THAT'S POSSIBLE. I ULTIMATELY WANT AN INDUSTRY COUNCIL. I FEEL CUT OFF BECAUSE LIVING AND RUNNING A BUSINESS AT INTEL, I GET CONSTANT MARKET INTELLIGENCE AND WHAT WAS GOING ON AROUND THE WORLD AND WHAT WAS GOING ON. WE'VE LOST SOME OF THAT. WE'VE TALKED ABOUT NEEDING TO BUILD A MARKET RESEARCH FUNCTION THAT'S GOING TO HELP US KEEP UP WITH ALL OF THOSE. I'M OPTIMISTIC. THIS PROJECT KICKED OFF WITH A REPORT JULY 16, THE FIRST TIME ANYBODY WAS DOING THE STUDIES, WE'VE GOTTEN FROM NOTHING TO AN APPROVED PROTOCOL, CALL CENTER, DATA INFRASTRUCTURE, RECRUITMENT ACROSS THE COUNTRY, AND WE'RE STILL IN AN ENVIRONMENT WHERE HIRING IS CHALLENGING. WE WILL GET THERE. WE PROMISE. I DEFINITELY THINK WE'RE GOING TO NEED THE INPUT OF THOSE FOLKS TO HELP ANTICIPATE WHAT STANDARDS ARE GOING TO BE NEEDED IN THESE DOMAINS. I'M TERRIFIED THAT WE'LL END UP IN THE SAME PROBLEM WITH CONSUMER HEALTH DEVICES THAT WE ARE IN EHRs NOW, IF WE DON'T GET OUT IN FRONT AND START DRIVING SOME STANDARDS. AND I DON'T THINK THEY CAN BE DRIVEN BY THE RESEARCH. THEY WILL HAVE TO BE DRIVEN BY THE CONSUMER MARKET. BUT THOSE OF US WHO WANT TO DO RESEARCH WITH THIS DATA NEED TO BE TRYING TO INFLUENCE AS MUCH AS POSSIBLE. EHR DATA IS POOR FOR RESEARCH. IT'S NOT DESIGNED FOR THAT. HOW CAN WE TRY TO MAKE SURE THAT AT LEAST THERE ARE SOME HOOKS AND SOME DATA FRAMEWORKS THAT MAKE THIS STUFF MORE RESEARCHABLE THAN JUST HERE IS THE NEXT VERSION, THE NEXT VERSION, EACH ONE STARTS WITH PROPRIETARY STACKS. >> QUESTIONS. >> (INDISCERNIBLE) FROM NINDS. COULD YOU ELABORATE WHATEVER ENGAGEMENT OR PARTICIPATION BY THE PARTY PAIR FOR FUTURE IF THERE'S ANYTHING THAT'S PLANNED CURRENTLY, SO IT'S REALLY LOOKING FOR JUST BEYOND THE ELECTRONIC HEALTH RECORD BUT LOOKING FOR -- I'M THINKING ABOUT RESEARCH-EMBEDDED CARE SO THE CONNECTION WOULD BE IMPLEMENTED IN A NORMAL DAY CARE >> YOU'RE ABSOLUTELY RIGHT. THE DRC, DATA AND RESEARCH CENTER AWARD THAT WENT TO GOOGLE, VANDERBILT, BROAD INSTITUTE, THEIR TASK WAS TURNING ON THE SPIGOTS OF DATA. WE'RE HAVING CONVERSATIONS WITH COMPANIES, NOT JUST THE EHR DATA. I WAS SAYING TO MY TEAM THERE'S NO SUCH THING AS THE EHR, RIGHT? EVEN FOR THE HEALTH PROVIDER ORGANIZATIONS, WHO HAD TO DO A DATA SPRINT TO SHOW THEY COULD DATA TO US, THEY HAVE WHAT THEY HAVE, WE HAVE TO REACH OUT TO LOTS OF OTHER PLACES, WE'RE WORKING WITH CMS TO PULL IN THAT DATA FOR THOSE WHO ARE ON MEDICARE. SO WE'RE WORKING ON THOSE LINKAGES AND THOSE EFFORTS BECAUSE I KEEP -- OUR JOB IS TO GET A HOLISTIC LONGITUDINAL HEALTH RECORD THAT COMES FROM LOTS OF PLACES. WE'VE GOT TO PREPARE PARTICIPANTS TO UNDERSTAND THIS IS GOING TO BE A LONG PAINFUL JOURNEY, ON ONE HAND ONE OF THE VALUES OF BEING IN THE PROGRAM THEY ARE GOING TO GET PROBABLY MUCH MORE RICH RECORD THAN ON THEIR OWN BECAUSE OF PILOTS, INVESTMENTS AND RELATIONSHIPS WE'RE CREATING BUT ON THE OTHER HAND THEY HAVE TO BE PATIENTS. I KNOW. I HAD ATTORNEYS HELP GET MY RICH RECORD TOGETHER BEFORE I DID CLINICAL TRIALS AND THAT WAS THE ONLY WAY I COULD DO IT. I'D SPEND THOUSANDS AND THOUSANDS OF DOLLARS EACH TIME TRYING TO GET MY RECORDS TOGETHER. IT'S PART OF THE PLAN AND THEY ARE LAYING OUT A ROAD MAP OF DIFFERENT, YOU KNOW, PBM DATA AND OTHERS WE WANT TO PULL IN TO CREATE AS RICH A DATASET AS POSSIBLE. >> QUESTION ON THE SIDE, GEORGE? >> THERE'S TWO WAYS OF LOOKING AT THIS KIND OF FANTASTICALLY INTERESTING EXPERIMENT. ONE IS THAT YOU ARE LOOKING AT A COHORT OF WHATEVER IT IS, A MILLION PEOPLE, WHO ARE GOING TO GIVE YOU REPRESENTATIVE DATA ABOUT THINGS. ANOTHER IS TO SAY THAT YOU'RE USING A MILLION PEOPLE AS A SENSOR TO SEE HOW YOUR PROGRAM IS WORKING. SO THE QUESTION IS HOW DO YOU SEPARATE THE INTERACTION BETWEEN THE COHORT WHICH IS SELF SELECTED AND INTERACTING WITH THE SYSTEM WHICH IS DESIGNED AND INTERACTING, IT'S PRETTY COMPLICATED PROBLEM. >> YEAH, IT IS. I SHOULD SAY THAT IT'S LIKE IN A WAY YOU'RE OPENING UP -- I SAY TO PEOPLE THAT IT'S LIKE THE -- ONE OF THE BIG THINGS WE'RE TRYING TO DO IS SOLVE PROBLEMS OR AT LEAST MAKE MISTAKES SO THAT OTHERS CAN LEARN FROM THEM. WE'RE ALL TRYING TO HEAD TOWARDS THIS LEARNING HEALTH SYSTEM WHERE, YOU KNOW, THE TIGHTNESS BETWEEN DATA COLLECTION AND RESEARCH AND PRACTICE IS MUCH, MUCH TIGHTER AND GOES MUCH FASTER. I KIND OF THINK WHAT WE'RE DOING IS WE'RE A PROTOTYPE FOR THE SCALE NEEDED FOR LEARNING HEALTH SYSTEM. NOBODY'S EVER PULLED TOGETHER THIS MASH-UP OF THESE DATASETS AND STARTED TO FIGURE OUT HOW THE HEALTH DO YOU DO THIS AT SCALE. AND WHO KNOWS WHAT'S GOING TO HAPPEN TEN YEARS OUT, RIGHT? BY THAT POINT WE HOPEFULLY WILL BE FURTHER DOWN THE CURVE OF JUST PRACTICES GENERATING RESEARCH THAT'S DRIVING RESEARCH THAT'S DRIVING PRACTICE AND THAT LOOP WILL BE TIGHTER. SO WE'RE TRYING TO SIT HERE, WE THINK WE'RE GOING TO GET A SEGMENTATION THAT WILL EMERGE OUT OF THIS. SOME WHO ARE HIGHLY INTERACTIVE WITH OUR SYSTEMS. SOME WHO ARE JUST I'LL DO MY BLOOD DRAWS, I DON'T CARE ABOUT A SOCIAL NETWORKING COMMUNITY AND ALL OF THAT. WE'RE GOING TO TRY TO LIKE, YOU KNOW, DEVELOP AT LEAST A QUALITATIVE SEGMENTATION IF NOT STATISTICAL SEGMENTATION OF PEOPLE'S RELATIONSHIP WITH THE PROGRAM AND MAKE THAT PART OF THE DATA AND LET RESEARCHERS FIGURE OUT, OKAY, HOW DO WE TEASE THESE THINGS APART AS WE GO THROUGH TIME. I GOT YOUR BACK HERE IF YOU WAVE YOUR HANDS I'LL TELL. >> THANKS FOR A VERY INTERESTING TALK. YOU MENTIONED DIGITAL SNAKE OIL, I IMAGINE REPRESENTATIVE TO THE AMA TALK WHO CALLED DIGITAL HEALTH THAT. >> I'VE BEEN USING THAT TERM FOR 15 YEARS. NOT A REFERENCE. I'M INTEL SAYING TECHNOLOGY IS GREAT, I WAS TRYING TO BE CAUTIOUS AND CAREFUL. I SEE IT WITH PATIENTS I'VE ADVOCATED FOR, 1500 CANCER PATIENTS, THINGS THEY BELIEVE WILL WORK, IT'S FRIGHTENING. I THINK WE'VE GOT TO BOTH BE OPENING CREATIVITY AND BE RESPONSIBLE IN HOW TO, YOU KNOW, CONTEXTUALIZE THAT. >> WHAT DO YOU HEAR FROM CLINICIANS YOU TALK TO, PEOPLE IN CHARGE OF HEALTH SYSTEMS THAT YOU CAN GET THE DIGITAL SNAKE OIL ATTITUDE, INDEED A LOT OF DATA IS NOT -- >> YEAH, IT'S LIKE ALL THE PREDICTABLE THINGS ARE BROUGHT OUT TO BEAR TO KEEP INNOVATION FROM HAPPENING. AND WON'T ALLOW US TO DO THIS. NOT TRUE, RIGHT? OR THEY WILL USE SECURITY AND PRIVACY BOGEYMAN TO SHUT INNOVATION DOWN WHEN THEY DON'T WANT TO REINVENT THE PAY MODEL. WE GET A LOT OF THAT WHICH PUTS THE ONUS ON THOSE WHO WANTS TO DISRUPTIVE, RIGHT? I MENTIONED MY TRANSPLANT NEPHROLOGIST INITIALLY CALLED THIS, YOU KNOW, ULTRASOUND DEVICE A TOY. IF YOU READ CLAYTON CHRISTIAN SON, DISRUPTIVE TECHNOLOGY, HE USES THAT WORD, DISRUPTIVE INNOVATORS, WORK THROW CAST ABOUT AS TOYS. SUDDENLY IT'S MORE INTERESTING, SUDDENLY SOME THINGS CHANGE. WE DO GET THOSE THINGS. I DON'T HAVE TIME TO REVIEW MANY BUT IF PEOPLE ASK ME TO BE A REVIEWER ON mHEALTH AND CONSUMER HEALTH TECHNOLOGY THINGS, I DON'T THINK WE'RE HELPING OURSELVES IN STUDY DESIGNS IN TERMS OF BEING ABLE TO SHOW EVIDENCE THAT SHOULD BE SHOWABLE. ONE OF THE VALUES OF OUR PROGRAM WILL BE WE'LL FINALLY HAVE ENOUGH OF THESE TECHNOLOGIES AT SOME SCALE TO START TO -- AND LET RESEARCHERS FIGURE OUT THIS USEFUL DATA, WHAT ARE THE ISSUES. IS THE MANUFACTURING RUN ON A PARTICULAR SENSOR CHANGE, YOU KNOW, IMPACTING DATA WE WANT TO USE, THERE'S A LOT OF THINGS WE DON'T REALLY KNOW ABOUT THIS DATA WE'RE GENERATING THAT HOPEFULLY THIS SCALE OF THIS WILL LET PEOPLE TRY TO FIGURE OUT. >> LAST QUESTION FROM THIS SIDE AND WE HAVE TO MOVE TO THE OUTSIDE. >> THANK YOU. LILLY ANNA BROWN FROM NIAID. I WAS VERY INTRIGUED BY THE CONCEPT OF PERSONAL HEALTH RECORD BUT I GUESS MY QUESTION IS HOW WOULD A PERSON BE ABLE TO ANNOTATE THAT RECORD HERSELF? I WOULD KNOW A LOT ABOUT WHAT I'M DOING AND YOU ALLUDED TO BEING ABLE TO SEE WHEN YOU'RE NAUSEOUS, HOW WOULD I BE ABLE TO DO THIS IN THE SYSTEM? >> WE DID THE WORKING GROUP LIKE TWO YEARS AGO. THAT'S HOW I GOT INVOLVED, GOT INVITED TO BE ON THE WORKING GROUP. THIS WAS A HOT ISSUE, RIGHT? WE HAD PATIENT ADVOCACY GROUPS AND PATIENT GROUPS THAT CAME TOGETHER TO FORM LARGER RESEARCH EFFORTS THAN NIH EVER HAD PARTICULARLY IN SOME RARE DISEASES. IT'S HARD TO ARGUE WITH RESULTS, RIGHT? THEY HAVE GONE AND DONE THIS. AND I THINK SO INITIALLY WE WANTED TO HAVE A TOOL THAT ALLOWED PEOPLE TO ANNOTATE THEIR OFFICIAL EHR. EVERYBODY GOT FREAKED OUT ABOUT THAT. WHAT WE'LL ULTIMATELY DEVELOP IN TIME IS A JOURNAL THAT A PARTICIPANT THEMSELF, I DON'T THINK THAT MANY BUT SOME WILL, THEM COMMENT AND GIVE ADDITIONAL INFORMATION TO RESEARCHERS. WE HAVEN'T STARTED WITH THAT OUT OF THE GATE BECAUSE IT'S LIKE OUR NLP CAPABILITY TO MAKE SURE THEY ARE NOT GIVING IDENTIFYING INFORMATION IN THOSE FIELDS AND ALL OF THAT IS PRETTY TRICKY. MY GUESS IS ONLY 5 TO 10% OF THE PEOPLE WILL DO IT BUT IF 5 TO 10% OF A MILLION PEOPLE DO IT WE'LL HAVE SOME REALLY INTERESTING CONTEXT. I'M PART OF A LONGITUDINAL STUDY OF TRANSPLANT RECIPIENTS RIGHT NOW. THEY DO SEND US OUR LAB WORK AND THEY SEND US OUR EHR NOTES ABOUT US. AND INVITE US TO BOTH ASK QUESTIONS BUT CORRECT THEM AND SAY, YOU KNOW, PATIENT WAS REPORTED WITH THIS, THIS AND THIS. IT'S SHOCKING HOW OFTEN AS YOU LOOK THEY ARE LIKE, I THINK THEY HAD THE PATIENT BEFORE OUR AFTER ME IN MIND BECAUSE THIS IS JUST NOT ACCURATE IN THEIR NOTES. >> LAST QUESTION FROM THE RIGHT SIDE. NO QUESTIONS? >> THEY HAVE BEEN ABUSED, IGNORED. EVERY TIME I TRY TO WALK OVER HERE. >> THEY HAVE BEEN ACTIVELY ENGAGED. ALL RIGHT. ERIC, WE'RE GOING TO BRING THIS TO A CLOSE. >> PERFECT. >> ONE THING I SHOULD MENTION WE'VE BEEN VERY FORTUNATE TO HAVE SENIOR INVESTIGATORS HERE AND WE ALSO HAVE SOME EARLY STAGE INVESTIGATORS WHO ARE BEGINNING TO THINK ABOUT WHAT WE WERE DOING, YEARS AHEAD. ANY WORDS OF ADVICE PARTICULARLY FOR THEM AS YOU LOOK AT THE COMPELLING CHALLENGES THAT YOU SEE THAT THEY COULD BEGIN WORKING ON? >> I DON'T KNOW HOW COMPELLING, BUT IT IS THE SECRET SAUCE. THE LEARNED USER-CENTERED DESIGN, I DON'T CARE IF YOU'RE JUST A BENCH SCIENTIST TWO WHO IS NEVER GOING TO INTERACT WITH REAL PEOPLE, UNFAIR CHARACTERIZATION, BUT LEARN USER-CENTERED DESIGN SO CONSTITUENTS, NOT LITERALLY JUST THE USER OF THE THING YOU'RE TRYING TO DEVELOP BUT ALL THE OTHER PEOPLE IN THE HUMAN SYSTEM THAT WILL BE IMPACTED BY THAT INNOVATION, WHETHER IT'S THROUGH RESEARCH OR START-UP, YOU WILL HAVE BETTER HYPOTHESES, YOU WILL HAVE BETTER PRODUCTS, YOU WILL HAVE BETTER INSIGHT INTO WHAT CAN BE DONE WITH THE KNOWLEDGE THAT YOU GET IF YOU UNDERSTAND IT BEING EMBEDDED IN A HUMAN SYSTEM AND MAKING THAT PART OF THE RESEARCH. MY BIGGEST FEAR ABOUT THE SCALEUP OF PRECISION MEDICINE RIGHT NOW BEYOND ONCOLOGY AND A FEW PLACES WHERE IT'S MAKING, IS THAT NOBODY'S TRYING TO INVENT THE NEW WORKFORCE THAT NEEDS TO BE READY FOR PRECISION MEDICINE. PHARMA COMPANIES, HOSPITALS, OTHERS, MEDICAL DEVICES HAVE NO IDEA WHAT BUSINESS MODEL WILL BE. THEY KNOW THE CURRENT MODEL IS NOT WORKING. WHAT I'M WORRIED ABOUT IS WHAT I WORRIED ABOUT 26 YEARS AGO WITH MY FIRST TELEHEALTH START-UP. WE'LL MAKE TECHNICAL AND SCIENTIFIC BREAKTHROUGHS INCREDIBLY PROMISING BUT WON'T GET INTO PRACTICE BECAUSE WE'VE NOT CONSIDERED ECOSYSTEM OF PEOPLE, MONEY AND POLITICS THEY HAVE TO LAND IN. WHETHER IT'S YOU OR SOMEBODY IN YOUR TEAM, UNDERSTAND USERS AND UNDERSTAND THOSE OTHER ISSUES. OTHERWISE, YOU KNOW, WE'RE GOING TO GET NICE ACADEMIC PAPERS AND PEOPLE WILL GET TENURE BUT WE'RE NOT GOING TO MAKE PEOPLE BETTER. >> EXCELLENT WORD OF ADVICE. THANK YOU VERY MUCH. [APPLAUSE] WE'LL BRING THIS TO A CONCLUSION AND MOVE DIRECTLY INTO THE FOUR TRACKS. YOU OR TIFFANY, ANY SPECIFIC GUIDANCE, WHERE DO PEOPLE GO FOR WHICH OF THE TRACKS? [END OF PROGRAM]