GOOD MORNING, EVERYONE. IF I COULD ASK EVERYONE TO TAKE A SEAT, AND WE'LL GO AHEAD AND GET STARTED. SO LAKSHMI WAS JUST TELLING ME THAT WE HAD A REALLY GOOD DAY IN SOCIAL MEDIA YESTERDAY, WE HAD 2.9000 TWEETS, 1.9000 RETWEETS, OVER 500 PEOPLE IN THE CONVERSATION, SO WE'RE REALLY GETTING OUT THERE. THANKS TO EVERYONE TWEETING YESTERDAY, I ENCOURAGE EVERYONE HERE AND IN THE VIDEOCAST TO KEEP TWEETING TODAY AND TOMORROW AND KEEP THE CONVERSATION GOING. ALL RIGHT. SO WELCOME BACK, AND THANK YOU FOR JOINING US THIS MORNING. I HOPE YOU'VE HAD A CHANCE TO TAKE IN SOME OF THE CITY AND MAYBE TAKE PART IN THE CELEBRATIONS YESTERDAY FOR YESTERDAY'S BIG GAME. I DON'T KNOW IF ANY OF YOU ARE AWARE, BUT GO CATS! [CHEERS AND APPLAUSE] SO I'M REALLY EXCITED TO CONTINUE YESTERDAY'S GREAT CONVERSATIONS. IT WAS A DAY FULL OF EXCHANGE. WE HEARD A LOT ABOUT STRATEGIES FOR CONNECTING AND ENGAGING WITH PATIENTS AND PHYSICIANS, AS WELL AS ASSOCIATED CHALLENGES WITH SOCIAL MEDIA USE. TODAY'S SESSIONS AND ACTIVITIES ARE FOCUSED ON SYNTHESIS AND ACTION. SHORTLY AFTER THIS WORKSHOP WE'LL BE PUBLISHING A SUMMARY OF EVENTS AS WELL AS A LESSONS LEARNED DOCUMENT LATER THIS FALL APPEARS WE LISTEN TO TODAY'S SPEAKERS AND TAKE PART IN THE FINAL BREAKOUT SESSIONS AND DISCUSSIONS, I WOULD LIKE US TO ASK OURSELVES WHAT WILL CHANGE WHEN WE LEAVE HERE TODAY? HOW WILL WE BE AGENTS OF CHANGE IN ACTION AND HOW WILL WE USE WHAT WE'VE LEARNED TO CHANGE PARADIGMS AND BUILD MORE MEANINGFUL RELATIONSHIPS WITH THE COMMUNITY? I HOPE YOU'VE HAD A CHANCE TO CONNECT WITH OTHERS HERE AND LEARN SOMETHING NEW AND I HOPE THESE CONNECTIONS CAN MAKE A DIFFERENCE IN YOUR OUTREACH. AND I HOPE THESE CONVERSATIONS WILL CONTINUE LONG AFTER WE LEAVE HERE TODAY AND INTO THE NEXT MEETING I HOPE THAT WILL HAPPEN SOON. SO I WOULD LIKE TO NEXT INTRODUCE SYLVIA CHOU, PROGRAM DIRECTOR FOR HEALTH COMMUNICATIONS AND INFORMATICS RESEARCH BRANCH AT NCI. >> Sylvia Chou: THANK YOU, EVERYONE, IT'S BEEN A PLEASURE HELPING EMI AND THE ORGANIZING COMMITTEE PUT THIS TOGETHER AND IT'S REALLY A PLEASURE TO ALSO BE ABLE TO BE TOGETHER, SPEND SOME TIME TOGETHER WITH PEOPLE FROM DIFFERENT SECTORS, YOU KNOW , FROM PEOPLE DOING CLINICAL TRIAL RESEARCH TO CLINICIANS AND PATIENT ADVOCATES AND PEOPLE WHO WORK IN BETWEEN THESE DIFFERENT GROUPS. I JUST WANT TO MAYBE TAKE TWO MINUTES TO OFFER A COUPLE OF THOUGHTS FROM THE PERSPECTIVE OF SOCIAL MEDIA AND HEALTH COMMUNICATION AND THE WAYS WE CAN ACTUALLY MAKE AN IMPACT IN THE WAY WE DO CLINICAL TRIAL AND ITS COMMUNICATION. I HEARD A LOT OF COMMON THEMES COMING THROUGH AND I THINK YOU'LL AGREE WITH ME THAT WORDS SUCH AS LISTENING, AUTHENTICITY, PATIENTS' VOICES, PATIENTS' EXPERIENCES, CONNECTION AND HUMAN OR HUMANE, HUMANISTIC, AND CONVERSATION, MEANING WE'RE NO LONGER THINKING ABOUT PUSHING OUT INFORMATION BUT DRAWING IN AND DOING A TWO-WAY AND PERHAPS MULTI-WAY, MULTI-DIRECTIONAL COMMUNICATION. I THINK THESE ARE THE THEMES OF WHY WE'RE HERE, YOU KNOW, TO TRY TO ULTIMATE AUTO LIES SOCIAL MEDIA -- TO UTILIZE SOCIAL MEDIA TO ENABLE BETTER LISTENING. HOWEVER, I ALSO THINK THERE ARE& A LOT OF AREAS WHERE WE MAY RISK SORT OF PUTTING THINGS IN ONE BUCKET. FOR EXAMPLE, NOT ALL SOCIAL MEDIA ARE THE SAME AND NOT ALL CLINICAL TRIALS ARE THE SAME AND I THINK THERE ARE TRIALS WHERE THE OPPORTUNITY FOR REALLY THERAPEUTIC BENEFIT AND HOPE ARE MUCH HIGHER THAN SOME OF THE OTHER ONES, YOU KNOW, WE HAVE DIFFERENT TYPES OF TRIALS. EVEN NOW WITH THE NEW DEFINITION WHERE I SIT TOBACCO CESSATION FACEBOOK STUDY IS A CLINICAL TRIAL AND WE NEED TO THINK ABOUT THE DIFFERENT TYPES OF TRIALS AND HOW WE MAY NEED TO HAVE DIFFERENT WAYS OF COMMUNICATING, ENGAGING WITH PATIENTS. SIMILARLY, EVERY ORGANIZATION NOW REALLY NEEDS TO HAVE A FACEBOOK PRESENCE -- OR NOT FACEBOOK, SOCIAL MEDIA PRESENCE, WHETHER IT'S ON TWITTER, AND INDIVIDUALS AND CLINICIANS CAN REALLY BENEFIT FROM BEING PART OF THAT CONVERSATION. BUT I THINK THAT IS SLIGHTLY DIFFERENT FROM WAYS WE COULD UTILIZE SOCIAL MEDIA AS DATA SORGS SOURCE, AS A WAY TO LISTEN FOR REAL PATIENTS' EXPERIENCES, PREFERENCES, PRIORITIES, AND VALUES. SO I THINK WE NEED TO THINK ABOUT WHERE WE ARE IN TERMS OF IS THIS DOING RESEARCH USING SOCIAL MEDIA OR IS IT LEVERAGING SOCIAL MEDIA AS A PLATFORM FOR COMMUNICATING. SO ALL OF THAT IS TO SAY I THINK WE HAVE AN OPPORTUNITY TO THINK ABOUT THE BIGGER PICTURE AND THE WAYS WE COULD MAKE AN IMPACT AND NCI IS ALSO, YOU KNOW, CLEARLY IN THE BUSINESS OF SUPPORTING RESEARCH, BEHAVIORAL SCIENCE AND COMMUNICATION RESEARCH AS WELL. SO THERE MAY BE AREAS THAT WE'RE NOT QUITE READY TO GO FULL OUT, SAY MOUNT ANOTHER GIANT CAMPAIGN , BUT WE MAY BE ABLE TO REALLY THINK THROUGH AS RESEARCH QUESTIONS AND DO A GOOD JOB AT EVALUATING AND ASSESSING, YOU KNOW, THE UTILITY OF THESE DIFFERENT PLATFORMS FOR WHAT WE HOPE TO ACHIEVE IN THE CLINICAL TRIAL REALM. AND LASTLY, I WOULD SAY I DO THINK THERE ARE OPPORTUNITIES TO IDENTIFY LOW-HANGING FRUITS AND WE'VE STARTED TO THINK ABOUT THOSE AND I THINK THOSE ARE AREAS THAT MAY BE MORE ACTION ABLE AND TANGIBLE, MAYBE THINK SMALL IN TERMS OF THE TYPES OF TRIALS WE REALLY FIND HAS BEEN HARD TO LET'S SAY BRING A MORE DIVERSE PATIENT POPULATION. THOSE ARE JUST SOME OF MY THOUGHTS AND I REALLY LOOK FORWARD TO HEARING FROM EVERYONE TODAY AS WE ALSO HAVE THE BREAK OUT SITIONZ WITH THE FIVE GROUPS, WE HOPE YOU'LL MINGLE AND REALLY HELP US THINK ABOUT WHERE WE CAN START TO MAKE AN IMPACT. SO IT IS MY PLEASURE TO INTRODUCE OUR SECOND DAY KEYNOTE , MS. SALLY OKUN, WHO IS VICE PRESIDENT FOR POLICY AND ETHICS AND HUMAN PROTECTION ADMINISTRATOR AT PATIENTS LIKE ME. AS YOU KNOW, THIS IS A PIONEERING PLATFORM FOR CONNECTING PEOPLE WITH SHARED HEALTH CHALLENGES. SALLY JOINED THE COMPANY IN 2008 SHE HAS OVERSEEN NUMEROUS ASPECTS OF THE SITE'S EARLY DEVELOPMENT RELATED TO HEALTH DATA INTEGRITY, MEDICAL ONCOLOGY AND DRUG SAFETY MONITORING PROGRAM. SALLY ENSURES THAT PATIENT VOICES AND INSIGHTS ARE INTEGRATED INTO THE DIVERSE HEALTH POLICY INITIATIVES, AND SHE OVERSEES THE COMPANY'S RESEARCH COLLABORATION AGREEMENT WITH THE UTION FDA CENTER FOR SURVEY LENS AND EPIDEMIOLOGY. SHE COMES TOWSES WITH A CLINICAL BACKGROUND DRRKS HER WORK AS A CLINICAL BACKGROUND AS A REGISTERED NURSE, SHE PRACTICES AS A COMMUNITY BASED PALLIATIVE AND END OF CARE LIFE SPECIALIST, SHE'S WON NUMEROUS AWARDS BUT I WILL SAVE THE BUY OL' FOR YOU TO READ IN THE PROGRAM. LET'S WELCOME SALLY. I'LL SAVE THE B I O FOR YOU TO READ IN THE PROGRAM. LET'S WELCOME SALLY. [APPLAUSE] >> Sally Okun: THANK YOU SO MUCH , I'M SO PLEASED TO BE HERE TODAY AND TO SEE SO MANY PATIENTS AND PEOPLE WHO ARE REALLY LIVING THE WORLD OF SOCIAL MEDIA IN A WAY THAT'S BRINGING TO LIFE THE INFORMATION THAT WE ALL NEED TO BETTER UNDERSTAND AND APPRECIATE. I'M GOING TO TALK TO YOU TODAY A LITTLE BIT ABOUT SOMETHING YOU MAY NOT HAVE HEARD ABOUT AND I'LL DO A CANVAS OF THE AUDIENCE HOW MANY OF YOU HAVE EVER HEARD OF THE TERM SOCIAL LICENSE? OKAY. GREAT. WE HAVE ONE. OKAY. SO MY PREMISE IS CORRECTED THAT I'M ACTUALLY INTRODUCING SOMETHING THAT MAY BE NEW TO YOU , AND I'M HOPING YOU'LL HAVE SOME OPPORTUNITY TO THINK ABOUT WHETHER OR NOT THIS IS SOMETHING THAT AS WE GO FORWARD REALLY BEGINS TO HAVE SOME AM CABILITYD TO NOT -- APPLICABILITY TO NOT ONLY ANYTHING ABOUT HOW WE LEVERAGE AND MAKE USE OF THESE NEW ENVIRONMENTS BUT ALSO HOW WE BEGIN TO ESTABLISH THE SOCIAL RESPONSIBILITY AND THE TRUSTWORTHINESS WE MUST HAVE IN ORDER FOR THIS TO BE OF IMPORTANCE AND VALUE TO PEOPLE, TO REAL PEOPLE. I ACTUAL NEED TO CHANGE MY DISCLOSURE ON THE SECOND PART OF THIS. I REALIZE THAT IN FACT ONE OF THE STUDIES I'M GOING TO BE TALKING ABOUT DOES TALK ABOUT OFF LABEL USE OF A PRODUCT, NOT IN A COMMERCIAL WAY, JUST SIMPLY THE RESEARCH FINDINGS FROM THAT. WE'RE GOING TO BE GOING OVER AN INTRODUCTION OF SOCIAL LICENSE, CONCEPTUAL MODELS OF SOCIAL LICENSE IS AND WHERE IT'S COME FROM. I'M GOING TO USE IT IN THE CONSTRUCT OF THINKING ABOUT HOW PATIENTS LIKE ME AS A CASE STUDY HAS EARNED SOCIAL LICENSE AND WHEN WE TALK MORE ABOUT IT YOU'LL BEGIN TO UNDERSTAND WHY I'M SAYING THAT. AND THEN WHERE WE'RE GOING WITH SOMETHING LIKE THIS CONCEPT IN THE DIGITAL AGE WHERE WE START THINKING ABOUT THE UBIQUITOUS NATURE OF DATA AND HOW IT'S JUST ENDLESSLY COLLECTING IN VARIOUS DIFFERENT PLACES AND WHAT WE'LL DO LIKE THAT, AND THEN HOPEFULLY HAVE SOME TIME FOR QUESTIONS AND DISCUSSION, WHICH WILL BE WONDERFUL. LET ME INTRODUCE YOU TO THE CONCEPT FIRST. SOCIAL LICENSEE MERGED OUT OF THE MINING INDUSTRY, AND IT EMERGED IN THE 1990S AS SOMETHING THAT WAS ACTUALLY IDENTIFIED AS BEING SOMETHING BEYOND CORPORATE RESPONSIBILITY FOR DOING WELL WITH THE PROJECTS MINING INDUSTRIES WERE INTERESTED IN DOING IN CERTAIN COMMUNITIES. THEY REALIZED THAT IT WAS NOT ENOUGH TO GET A PERMIT TO DO THEIR WORK, THAT THE GOVERNMENT APPROVAL OF WHAT THEY NEEDED TO DO WAS NOT GOING GOING TO BE SUFFICIENT FLT COMMUNITY ITSELF DIDN'T ACCEPT THE FACT THAT THIS WAS A PROJECT THEY FELT WOULD BENEFIT THE COMMUNITY. SO WHILE IT WAS NOT WELL UNDERSTOOD THAT THEY NEEDED TO FIGURE OUT WAYS OF DOING THIS, THEY FIGURED OUT THERE WAS A NEED OF COMMUNICATING WITH THE COMMUNITY WITHIN WHICH THEY WOULD BE OPERATING TO ENSURE THERE WAS SOME WAY OF AFFORDING THE COMMUNITY THE OPPORTUNITY TO WEIGH IN ON APPROVING THE PROJECT WITHOUT A FORMAL APPROVAL NECESSARILY BEING REQUIRED. IT WAS FIRST USED BY AN INTERNATIONAL MINING EXECUTIVE IN A CONFERENCE THAT WAS HELD ON MINING IN GENERAL AND IT WAS LOOKING AHEAD FOR THE NEXT 25 YEARS. NOW, I'M GOING TO MAKE THE CONNECTION HERE NOW BECAUSE I WANT YOU TO BEGIN THINKING ABOUT THIS. WE ARE IN A NEW ERA OF MINING. WE ARE IN AN ERA OF MINING WHERE DATA IS THE COMMODITY, WHERE DATA IS THE PIECE OF THINGS THAT'S BEING USED FROM COMMUNITIES ALL OVER AND WE'RE STARTING TO THINK ABOUT WAYS WHERE WE CAN BEGIN TO HARNESS SOMETHING LIKE THE SOCIAL LICENSE AROUND THIS TO MAKE MORE SENSE OF ITS USE. TRAFNLGT I'LL START HERE ACCIDENT I LIKE TO START WITH SOMETHING WITH A TOUCH OF HUMPLET THE IDEA OF SOCIAL LICENSE SOMETHING SOMEONE IS GOING TO HAND YOU TO SAY OKAY YOU HAVE OUR COMMUNITY'S APPROVAL TO MOVE FORWARD IS NOT THE WAY THIS WORKS. IT'S NOT AS IF SOMEONE IS GOING TO HAVE THAT AND THEN COULD STAND UP THERE AND STOP YOU OR HAVE YOU GO FORWARD WITH WHAT YOU HAVE TO DO AND IN THIS PARTICULAR CARTOON YOU CAN SEE THE PROTESTORS ARE HOLDING BACK SAYING WAIT A MINUTE THEY'VE GOT THEIR SOCIAL LICENSE SO I GUESS WE NEED TO STOP. NO, THAT'S NOT HOW THIS SHOULD WORK AT ALL. SOCIAL LICENSE SHOULD BE A RECIPROCAL ENDORSED OPPORTUNITY FOR BOTH PARTIES TO BETTER UNDERSTAND HOW THEY CAN MEET THE NEEDS AND THE SOCIAL, SOCIETAL EXPECTATIONS AS THEY GO FORWARD WITH THE WORK THAT THEY'RE GOING TO DO. SO A LITTLE BIT ABOUT SOCIAL LICENSE, WHAT IT IS AND WHAT IT IS NOT. IT'S A FORM OF SOCIAL ACCEPTANCE OR APPROVAL THAT COMPANIES OR ORGANIZATIONS OR RESEARCHERS CAN EARN THROUGH CONSISTENT AND TRUSTWORTHY BEHAVIOR, AND IT'S THROUGH INTERACTION WITH THE STAKEHOLDERS, IN THIS CASE THE SOCIAL MEDIA APPEARS THE STAKEHOLDERS AND THE PEOPLE WITHIN THE ENVIRONMENTS OF THOSE SOCIAL MEDIA COMMUNITIES THAT YOU'RE REALLY TRYING TO CONNECT WITH AND EARN THEIR SOCIAL LICENSE. IT'S CONSTRUCTED ON A PERCEPTION THAT A COMPANY OR PROJECT HAS A LEGITIMATE PLACE IN THAT COMMUNITY. SO WHAT THE WE HAVE TO THINK ABOUT IS DOES THE COMMUNITY OF RESEARCHERS HAVE A LEGITIMATE PLACE IN SOCIAL MEDIA? DOES SOCIAL MEDIA HAVE A LEGITIMATE PLACE IN RESEARCH? AS I SAID BEFORE, IT'S NOT A PIECE OF PAPER. IT'S NOT A DOCUMENT THAT SOMEONE IS GOING TO HAND YOU. IT'S A RELATIONSHIP THAT GETS BUILT OVER TIME. SO BROADLY DEFINED, IT'S THE EXTENT TO WHICH AN ENTITY, IN THIS CASE RESEARCHERS, IS CONSTRAINED TO MEET THE SOCIETAL EXPECTATION, IN THIS CASE SOCIAL MEDIA, AND AVOID TIFORTS THAT PEOPLE -- ACTIVITIES THAT PEOPLE IN THEIR COMMUNITIES MIGHT DEEM ACCEPTABLE. I'LL FLIP ABOUT THAT AND THINK ABOUT IT THE OTHER WAY, THE EXTENT ON WHICH AN ENTITY, SOCIAL MEDIA IS CONSTRAINED TO MEET THE SOCIETAL EXPECTATION AND AVOID ACTIVITIES THAT PEOPLE AND THEIR COMMUNITIES DEEM UN ACCEPTABLE IN RESEARCH. SO THERE'S A BALANCE HERE THAT WE'RE GOING TO HAVE TO ACHIEVE IN ORDER TO BE ABLE TO ENSURE THAT BOTH PARTIES IN THIS SITUATION WHEN YOU'RE TRYING TO USE SOCIAL MEDIA FOR RESEARCH PURPOSES OR SOCIAL MEDIA IS TRYING TO GET THEIR VOICE INTO RESEARCH, THAT THERE'S GOING TO HAVE TO BE A BIDIRECTIONAL ASPECT TO THAT. SO THE NORMATIVE COMPONENTS OF SOCIAL LICENSE THAT ARE BUILT WITHIN IT THAT I THINK MAKE GOOD SENSE TO WHAT WE'RE TALKING ABOUT HERE TODAY IS FIRST LEGITIMACY. IS WHAT WE'RE TRYING TO DO LEGITIMATE IN THE EYES OF THE BEHOLDER? IN THIS CASE WHETHER THE PEOPLE WHO ARE COMMUNICATING AND PARTICIPATING IN SOCIAL MEDIA WOULD NEED TO SEE THAT THE RESEARCH HAS A LEGITIMATE PLACE IN THEIR LIVES, IN THEIR REASONS FOR BEING ENGAGED IN A SOCIAL MEDIA PLATFORM TO BEGIN WITH. BUT WILL HE JILT MA SI IS HARD TO MEASURE. IT'S NOT SOMETHING THAT'S EASILY IDENTIFIED IN WAYS THAT YOU CAN QUANTIFY. YOU NEED TO DEVELOP CREDIBILITY. SO AS RESEARCHERS OR AS SOCIAL MEDIA, WE NEED TO IDENTIFY WAYS OF BEING ABLE TO CONTINUOUSLY INCREASE OUR CREDIBILITY FOR THE PURPOSE OF WHAT WE'RE TRYING TO DO IN TERMS OF THAT RELATIONSHIP IF AS A SOCIAL MEDIA ENVIRONMENT WE ARE TRYING TO GET OUR VOICE OUT THERE AS SOMETHING THAT HAS A CREDIBLE PLACE IN THE RESEARCH COMMUNITY, THEN WE NEED TO THINK ABOUT WAYS OF BEING SURE THAT WE'RE SORT OF ELIMINATING OR REMOVING AS MUCH OF THE BAD ACTORS AS POSSIBLE AND REALLY GIVING VOICE AND EMPOWERMENT TO THE PEOPLE WHO CAN BRING THE KIND OF INFORMATION RESEARCHERS WILL DEPEND ON TO HAVE GOOD CREDIBLE INFORMATION. LASTLY, TRUST. YOU KNOW, ONE OF THE THINGS THAT ULTIMATELY COMES OUT OF HAVING HAD THIS EXPERIENCE OF EARNING SOCIAL LICENSE IS TRUST. THAT IS WHAT YOU'RE REACHING FORKS YOU'RE TRYING TO ESTABLISH A RELATIONSHIP WITH WHOMEVER IT IS YOU'RE WORKING WITH TO ESTABLISH THAT SENSE OF TRUSTWORTHINESS. I FIND YOU'RE LEGITIMATE, I REALIZE WHAT YOU'RE TRYING TO DO IS A GOOD THING. WHAT YOU'RE DOING SEEMS TO BE CREDIBLE, I TRUST YOU TO MOVE FORWARD AND WE AS A COMMUNITY WILL MOVE FORWARD WITH YOU. THERE ARE SOME KEY COMPONENTS TO SOCIAL LICENSE THAT ARE REALLY CRITICALLY IMPORTANT AND ONE VERY BIG IMPORTANT ASPECT OF THIS IS BEING TRANSPARENT, AND OPENNESS TO DIVERGENT VIEWS. NOW, WHEN WE'RE TALKING ABOUT SOCIAL MEDIA, AS WAS ALREADY INTRODUCED, THEY'RE NOT ALL THE SAME. RESEARCH IS NOT ALL THE SAME. SO WE HAVE TO UNDERSTAND THAT THE CONTEXT WITHIN WHICH WE'RE TRYING TO WORK TOGETHER IS GOING TO INFLUENCE THE KIND OF INFORMATION THAT WE'RE GOING TO NEED TO TRUST FROM EACH OTHER. THE KIND OF THINGS WE'RE GOING TO HAVE TO SET THE STAGE FOR HAVE LEGITIMACY OR ARE CREDIBLE. SO AS YOU START TO THINK ABOUT WAYS OF HOW THIS COULD FIT INTO THE KINDS OF WORK THAT WE'RE THINKING ABOUT TRYING TO ADVANCE HERE, JUST CONTINUOUSLY ASKING YOURSELF IF I WERE WITHIN THE SOCIAL MEDIA COMMUNITY, WHAT WOULD I NEED FROM RESEARCHERS? IF I'M WITHIN THE RESEARCH COMMUNITY, WHAT DO I NEED FROM SOCIAL MEDIA? TRANSPARENCY, YOU NEED ON BOTH SIDES, RIGHT? IT NEEDS TO HAVE A SENSE OF INTEGRITY AND FAIRNESS. THE SMALLER VOICES THAT DON'T NORMALLY GET VOCAL CAN GET VOCAL IN A SOCIAL MEDIA ENVIRONMENT. WE CAN EMPOWER THAT AND WE CAN FIND WAYS OF HAVING RESEARCHERS GET INFORMATION THAT THEY WOULD NOT NORMALLY LEARN ABOUT OR HEAR ABOUT, AND WE HEARD ABOUT A LOT OF THAT THROUGH THE STORIES YESTERDAY. THEN LASTLY, EVERY SINGLE POINT IN TIME SHOULD HAVE THE UNDERSTOOD CONSENT OF THE PERSON FROM WHOM THE INFORMATION IS BEING GATHERED. SO IF, FOR EXAMPLE, WITHIN A SOCIAL MEDIA ENVIRONMENT THAT SOCIAL MEDIA COMMUNITY AGREES AS A COMMUNITY THAT PARTICIPATING IN RESEARCH PROJECTS AND GIVING OUR VOICE TO THINGS THAT RESEARCHERS NEED TO KNOW ABOUT WHO WE ARE AND WHY WE GATHER AND WHY WE COMMUNICATE WITH EACH OTHER, WE SHOULD ALL AS A COMMUNITY BEGIN TO UNDERSTAND THAT IF WE CONSENT TO THAT, WE ARE CONSENTING TO THEM TO USE OUR DATA. WE ARE CONSENTING TO THEM TO HAVE OUR VOICES HEARD AND THEN TO USE THAT INFORMATION IN A WAY THAT THEY CAN ADVANCE THROUGH RESEARCH. ON THE SAME TONE FOR THAT, THE CONSENT FROM THE RESEARCHERS NEEDS TO BE UNDERSTOOD THAT YOU WILL NOT TAKE THIS INFORMATION AND USE IT IN WAYS THAT WASN'T INTENDED OR THAT YOU WEREN'T TRANSPARENT ABOUT AND FINDING A WAY OF BEING ABLE TO ENSURE THAT THAT BIDIRECTIONAL TRUSTWORTH INESS IS BUILT WITHIN THAT CONSENT MODEL. SO THERE ARE THREE DIFFERENT OR ACTUALLY EVEN FOUR DIFFERENT CONCEPT ACTUAL MODELS FOR SOCIAL LICENSE. I'M JUST GOING TO GO THROUGH THESE RELATIVELY QUICKLY. I HAVE PROVIDED YOU LOTS OF REFERENCE INFORMATION. IF YOU HAVE ADDITIONAL INTEREST IN PURSUING IT FURTHER. BUT I WANTED TO GIVE YOU A SENSE THAT THERE ARE SOME FRAMEWORKS FOR HOW THIS CAN START TO PLAY OUT, AND I THINK ALL OF US IN RESEARCH AND ALL OF US IN DIFFERENT KINDS OF WORK THAT WE DO, WHETHER WE'RE CLINICIANS OR RESEARCHERS LIKE FRAMEWORKS, SO I THOUGHT THIS MIGHT BE HELPFUL TO GET A BETTER SENSE OF. SO THE PYRAMID MODEL WHICH IS PROBABLY THE MOST LIKELY MODEL TO BE MOST USEFUL, THE OTHERS GET A LITTLE MORE COMPLEXES, IS TO JUST REALLY BEGIN THINKING ABOUT THAT BOTTOM PART OF THE PYRAMID. IF WHAT YOU ARE TRYING TO DO ISN'T LEGITIMATE, DOESN'T HAVE CREDIBILITY AND YOU DON'T HAVE THE TRUST OF PEOPLE, YOU'RE NOT GOING TO GET BEYOND THAT BOUNDARY. YOU'RE NOT GOING TO GET BEYOND THE BOUNDARY HERE. YOU'RE GOING TO BE WITHDRAWN RIGHT AWAY. IF IT DOESN'T SEEM LEGITIMATE TOLT COMMUNITY, THERE'S NO REASON FOR THAT COMMUNITY TO KEEP GOING FORWARD. IF IT SEEMS LEGITIMATE, THERE'S A CERTAIN AMOUNT OF ACCEPTANCE THAT'S BEEN PROVIDED. OKAY, IT SEEMS LIKE WHAT THEY'RE TRYING TO DO MAKES SENSE, LET'S SEE IF WE CAN PURSUE IT FURTHER. YOU GET TO THE POINT WHERE THE CREDIBILITY BOUNDARY BECOMES IMPORTANT. WELL, IF THEY SEEM LIKE THEY ARE LEGITIMATE AND THEY WANT TO COME AND DO SOMETHING THAT HELPS OUR COMMUNITY, HOW CAN WE TEST OUT THE CREDIBILITY OF THAT? HAVE THEY DONE OTHER RESEARCH WITH OUR TYPES OF DIAGNOSES? DO THEY KNOW MUCH ABOUT US? ARE THEY TRYING TO LEARN ABOUT US? ARE THEY TRYING TO UNDERSTAND WHAT OUR LIVES ARE LIKE? AT THE SAME TIME FROM THE SOCIAL MEDIA PERSPECTIVE, ARE YOU TRYING TO UNDERSTAND THE CONSTRAINTS A RESEARCHER MIGHT BE OPERATING FROM IN ORDER TO APPRECIATE THE KINDS OF THINGS THEY MIGHT NEED TO DO TO ENSURE THAT THEIR RESEARCH CAN MOVE FORWARD AND GET FUNDED, FOR EXAMPLE? SO AS YOU GO UP THIS PYRAMID, YOU GO THROUGH DIFFERENT BOUNDARY LEVELS. AT THE FINAL POINT YOU HAVE REACHED THAT LEEFL OF TRUST -- LEVEL OF TRUST. SO THIS IS ACTUALLY JUST A USEFUL FRAMEWORK TO THINK ABOUT IF WE CAN BE LEGITIMATE IN WHAT WE'RE DOING, WE CAN MOVE ON TO THE NEXT POINT TO PROVE OUR CRED NOT AND MOVE ON TO THE NEXT POINT TO DEMONSTRATE THAT WE CAN BE TRUSTED -- TO PROVE OUR CREDIBILITY AND MOVE TO THE NEXT POINT TO DEMONSTRATE WE CAN BE TRUSTED. THIS IS MORE COMPLEX, I WON'T SPEND TIME ON IT BUT I THINK YOU'LL SEE A CONTINUOUS VIEW OF A TRIANGLE. THERE'S SOMETHING THAT'S SIMILAR HERE TO THE OTHER ONE IN THAT THERE'S THIS NOTION OF GOING UP WARD BUT THAT THERE'S A TRIANGULAR ASPECT TO THIS. IN THIS CASE IT'S LOOKING AT SOCIAL LICENSE IN RELATIONSHIP TO POLITICAL LICENSE, IN RELATIONSHIP TO LEGAL LICENSE. RESEARCERS ARE CONSTRAINED BY MANY OF THOSE THINGS, RIGHT? SO IN THIS MODEL IT ACTUALLY BEGINS TO TAKE SOME LIFE FOR A RESEARCH COMMUNITY TO SAY WELL WE HAVE TO MEET THE REQUIREMENTS OF A VARIETY OF DIFFERENT REGULATORS AND OTHER GUIDANCES IN ORDER TO MAKE SURE THUR RESEARCH WILL GET FUNDED APPROPRIATELY, WHAT DO I NEED TO MAKE SURE THAT THAT IN TERMS OF EARNING THE SOCIAL LICENSE I DON'T COMPROMISE MYSELF ON THOSE AS WELL, SO I HAVE TO BE CAREFUL ABOUT THAT. IT'S SORT OF MOVING THE NEELINGSDZ ON ETHICS -- NEEDLE ON ETHICS AND COMPLIANCE TO THE POINT WHERE WE'RE MOVING BEYOND JUST COMPLIANCE AND PUSHING OURSELVES TO THIS POINT OF BEING ETHICALLY AND SOCIALLY RESPONSIBLE BUT AT THE SAME TIME NOT COMPROMISING ON THE KINDS OF THINGS WECH ABSOLUTELY HAVE TO HAVE IN ORDER TO GET THE APPROVAL OF THE FUNDERS AND REGULATORS THAT ARE GOING TO BE ULTIMATELY USING THE DATA FROM THE RESEARC THAT WE GENERATE. AGAIN, JUST ANOTHER TRIANGLE VIEW. THIS ONE IS NOW SORT OF LOOKING AT IT FROM A SOCIOPOLITICAL PERSPECTIVE IFERTION IT BE A MARKET PERSPECTIVE -- PERSPECTIVE, MARKET PERSPECTIVE AND COMMUNITY PERSPECTIVE. THESE MODELS CAME OUT OF THE MINING INDUSTRY, THE LANGUAGE IS NOT ALWAYS APPLICABLE TO HEALTH RESEARCH AND SOCIAL MEDIA BUT I THINK THE CONCEPTS R THE CONSTRUCTS ARE, WHEN YOU START TO PUT THE IDEAS TOGETHER AND YOU START TO THINK ABOUT RESEARCHERS ENTERING INTO A NEW COMMUNITY ENVIRONMENT AND A NEW COMMUNITY ENVIRONMENT ENTERING INTO A RESEARCH WORLD, THERE'S GOING TO NEED TO BE THIS SORT OF INFORMATIONAL EXCHANGE AND TRANSPARENCY THAT WOULD ACTUALLY HAVE A COMMUNITY ACCEPTANCE PART OF IT, A SOCIOPOLITICAL, MAYBE REGULATOR PART OF IT AS WELL AS UNDERSTANDING WHAT'S HAPPENING OUT THERE WITH THE DATA THAT WE'RE GOING TO PUT OUT THERE IN THE COMMUNITY AS A RESEARCH COMMUNITY. SO I'M GOING TO SHIFT GEARS HERE A LITTLE BIT AND GIVE YOU A BIT OF A CASE STUDY, AND BECAUSE I WORK WITH PATIENTS LIKE ME, I KNOW PATIENTS LIKE ME AND I THINK IT WAS IMPORTANT TO BE ABLE TO USE SOME EXAMPLES THAT I THINK COULD BE BROUGHT TO LIFE EASILY FOR YOU. WE AT PATIENTS LIKE ME HAVE BEEN COLLECTING DATA FROM PATIENTS SINCE 2006. WE WERE FOUNDED IN 2004. SINCE THEN WE HAVE BEEN LITERAL LY EARNING OUR SOCIAL LICENSE FROM THE PEOPLE WHO HAVE AGREED TO PROVIDE DATA ON OUR PLATFORM. OUR MISSION HAS ALWAYS BEEN ABOUT IMPROVING THE LIVES OF THE PEOPLE WHO PARTICIPATE ON OUR SITE AS WELL AS FOR GAINING KNOWLEDGE AND INSIGHTS FROM PATIENTS WHO PARTICIPATE ON THE SITE THAT CAN BE USED BEYOND OUR WALLS AS WELL. WE DID START WITH ALS IN THE PROJECTS I'LL TALK TO YOU FOR THE MOST PART ARE THAT DIAGNOSIS WHICH I KNOW IS NOT ONCOLOGY BUT I THINK COULD HAVE SOME APPLICABILITY IN THE WORK WE'VE DONE THERE. WE EXPANDED THE PLATFORM TO ANY CONDITION IN 2011 SO RIGHT NOW WE HAVE ABOUT 2700 DIFFERENT CONDITIONS OVER 630,000 MEMBERS WHO HAVE BEEN PARTICIPATING ON THE SITE. WE HAVE BEEN COLLECTING LARGE, LARGE AMOUNTS OF DATA, MUCH OF IT'S STRUCTURED AND VERY QUANTIFIABLE TOOLS THAT WE CREATE THAT ARE CONDITION- SPECIFIC FOR SOME SITUATIONS AND OTHERS ARE NOT. WE ASK EVERYBODY ABOUT THE SAME FIVE COMMON SYMPTOMS, SO WE COULD TELL YOU ABOUT HOW LATE 600,000 PEOPLE RESPOND TO THINGS LIKE PAIN AND FATIGUE AND INSOMNIA AND ANXIETY AND DEPRESSION, BUT FOR SOMETHING SPECIFIC ABOUT A FUNCTIONAL RATING SCORE FOR ALS, WE WOULD HAVE THAT JUST ON THE ALS COMMUNITY, FOR EXAMPLE. WE'VE GENERATED ABOUT 100 PUBLICATIONS. WE ARE A RESEARCH BASED PLATFORM BUILT WITHIN A SOCIAL NETWORK. WE'VE BROUGHT TWO THINGS I'M TALKING ABOUT TODAY TOGETHER, WHICH IS WHY IT'S A PERFECT CASE STUDY TO THINK ABOUT TODAY. WE HAVE RESEARCHERS AND BIO INFORMATICS, CLINICIANS ON STAFF, PHARMD'S AND NURSES, PHYSICIANS PART OF OUR TEAM AND PART OF THE ANALYTICS GROUP AS WELL, WE ALSO HAVE A BUILT IN SAFETY MONITORING PLATTED FORM SO WHEN WE'RE WORKING WITH A PHARMA COMPANY FOR EXAMPLE WE CAN MEET THEIR REGULATORY OBLIGATIONS ON EVENT REPORTING BUT THERE'S ALSO ADVERSE DATA WE'RE STARTING TO COLLECT AS WELL. WE RECENTLY COMPLETED A THREE YEAR RESEARCH COLLABORATION WITH THE FDA, SOME PUBLICATIONS WILL BE COMING OUT LATER THIS YEAR THAT COME FROM THAT. WE COMPLETED ELEVEN PROJECTS OUT OF 125 ON OUR RESEARCH PLAN, IT WAS AN AGGRESSIVE PLAN FOR A THREE YEAR WORK PROJECT AND WE'RE PROUD OF THE WORK WE'VE DONE WITH THAT. LARGELY WHAT WE DID WAS HELP THE FDA CHARACTERIZE DATA THAT WAS NOVEL TO ELM THIS. THEY HADN'T REALLY UNDERSTOOD WHAT THAT DATA WAS LIKE BEFORE, SO WE WERE ABLE TO HELP THEM UNDERSTAND HOW THE DATA IS COLLECTED, WHY THE PATIENT VOICE WAS IMPORTANT FOR US TO RETAIN AND NOT CHANGE INTO SOME CLINICAL TERM, WHY THAT PATIENT VOICE COULD ACTUALLY MAP TO A CLINICAL TERM AND HOW WE WOULD DO THAT. SO I THINK THERE'S DIFFERENT WAYS THAT WE HAVE DEMONSTRATED UTILITY FOR REGULATORY PURPOSES THAT ARE YET TO BE EMPLOYED IN MANY WAYS BUT THE GROUNDWORK FOR THAT WAS BEGUN AND ACTUALLY WAS A GREAT PROJECT. WE ACTUALLY NOW HAVE A COUPLE GOING ON WHERE WE'RE GOING TO BE DOING SOME ADDITIONAL WORK WITH ALS AGAIN WITH SOME FDA RESEARCH ERS, THAT WILL BE QUITE INTERESTING, AND BUILDING UPON THE WORK THAT WE'VE ALREADY DONE SO I WANTED TO JUST SHOW YOU BRIEFLY, THIS HAPPENS TO BE A QUESTIONNAIRE THAT GETS DEPLOYED WITH SOME REGULATOR -- REGULATOR I JUST PULLED A SNAPSHOT, IT'S BUT IT IS SORT OF REPRESENTATIVE OF THE WAYS THAT PEOPLE FEEL ABOUT TRIALS. THIS HAS BEEN A CONSISTENT RESPONSE THAT WE'VE BEEN GETTING TO MOST OF THESE QUESTIONS. WE HAVE SOMETHING CALLED TRIAL MARK NOW WHERE AFTER A FUP MONTHS ON THE SITE PATIENTS -- FEW MONTHS ON THE SITE PATIENTS ARE GIVEN A SURVEIL TO ASK ABOUT THEIR CLINICAL TRIAL EXPERIENCE AND WE'RE LEARNING QUITE A BIT FROM THAT, FROM PEOPLE WHO HAVE PARTICIPATED, BUT WE'RE LEARNING AS MUCH FROM PEOPLE WHO HAVE NEVER BEEN ASKED TO PARTICIPATE, SO IT'S INTERESTING. AS YOU CAN SEE, I THINK THE TOP FEW THINGS ARE REALLY IMPORTANT TO KEEP IN MIND AND WE HEARD THIS YESTERDAY. WE HEARD THAT THE OPPORTUNITY TO IMPROVE THE HEALTH OF OTHERS IS REALLY IMPORTANT TO PEOPLE WHO PARTICIPATE IN CLINICAL TRIALS, THAT THAT WOULD BE AN INFLUENCE THAT THAT WOULD MATTER TO THEM. BUT WE ALSO HEARD THAT THEY WANT AN OPPORTUNITY TO IMPROVE THEIR OWN HEALTH, AND IF YOU DON'T AS A RESEARCHER UNDERSTAND THAT, YOU NEED TO LEARN THAT BECAUSE WE AS RESEARCHERS WOULD SAY WHERE WILL, YOU KNOW, CLINICAL TRIALS ARE NOT ABOUT IMPROVING YOUR INDIVIDUAL HEALTH, IT'S ABOUT TRYING TO GENERALIZE WHAT WE LEARN SO THAT WE CAN IMPROVE THE HEALTH OF OTHERS, BUT IT'S AN IMPORTANT THING THAT MANY PEOPLE WILL HAVE AS THE MAIN INFLUENTIALER FOR THEM TO THINK ABOUT JOINING A TRIAL. THEN IT GOES DOWN. THE THIRD ONE IS INTERESTING. THE DISTANCE IS EQUALLY IMPORTANT AS ALTRUISM AND IMPROVING MY HEALTH, SO THESE KINDS OF PRACTICAL ASPECTS ARE REALLY IMPORTANT. WHEN YOU BEGIN TO LEARN THOSE THINGS AS RESEARCHERS AS YOU'RE ENTERING INTO A RELATIONSHIP WITH A NOVEL ENVIRONMENT LIKE SOCIAL MEDIA, ASKING THESE KINDS OF QUESTIONS OF THE INFLUENCERS WITHIN THOSE SOCIAL MEDIA ENVIRONMENTS ARE IMPORTANT. NOW, THE DISTANCE TO TRAVEL MAY BE MOOTD IF YOU'RE GOING DIESH MOOT IF YOU'RE GOING TO BE DOING TROARCH A SOCIAL MEDIA PLATFORM BUT IF YOU'RE GOING TO RECRUIT PEOPLE TO A STUDY THAT IS OUT OF THEIR GEOGRAPHIC RANGE, THAT COULD MAKE A BIG DIFFERENCE. I'LL TALK ABOUT SOME OF THE WORK WE'VE DONE IN THE PAST WITH SPECIFIC STUDIES THAT RIESHED US TO THINK ABOUT HOW -- REQUIRED US TO THINK ABOUT HOW WE BUILT UPON OUR SOCIAL LICENSE. I'LL TALK ABOUT OUR LITHIUM STUDY, DONE IN 2008, FOLLOWING THE REPORT OF A SMALL STUDY DONE IN ITALY OF ONLY 16 PATIENTS THAT SHOWED THAT THE PROGRESSION OF ALS WAS SLOWED BY THE PRESENCE OF LITHIUM CARBONATE. NOW, YOU CAN IMAGINE THAT FOR PATIENTS WITH ALS, LEARNING INFORMATION LIKE THAT PROMPTED THEM TO GO TO THEIR DOCTORS AND SAY I WANT LITHIUM. DON'T CARE, I JUST WANT IT, LET'S GET GOING, LET'S SEE WHAT HAPPENS. NOW, IN THE ABSENCE OF HAVING ANY RIGOR OR STRUCTURE AROUND THAT, WE WOULDN'T HAVE LEARNED ANYTHING AT ALL. HOWEVER, THE PATIENTS THEMSELVES STARTED TO GATHER THEIR DATA AND HOW THEY WERE FEELING AS A RESULT OF BEING ON LITHIUM AND PUTTING IT IN I CAN SELL SPREAD SHEETS AND -- EXCEL SPREADSHEET AND ADDING INFORMATION INTO THEIR PROFILES ALTHOUGH WE WERE FAIRLY YOUNG AT THAT POINT ON PATIENTS LIKE ME. SOME OF THE MORE EMPOWERED PATIENTS CAME TO US AND SAID CAN YOU HELP US CREATE SOMETHING THAT WE CAN GATHER THIS DATA ASALLY COHORT OF PEOPLE WHO ARE TAKING THIS DRUG WITH OUR PHYSICIAN GIVING IT TO US AND WE CAN START TO IDENTIFY THE THINGS THAT MAYBE COULD HELP US UNDERSTAND WHETHER THIS DOES MATTER OR NOT. THE OTHER THING WE ACTUALLY WERE ABLE TO DO AND WE DID THIS OVER A PERIOD OF TIME, WE WERE ABLE TO ACTUALLY LOOK BACK AT ALL OF OUR ALS PATIENTS TO DO WHAT WE CALL, TO CREATE WHAT WE CALLED A MATCHING ALGORITHM, WHAT WOULD THE NORMAL PROGRESSION LOOK LIKE FOR MOST PEOPLE WITH ALS AND THIS PARTICULAR DISEASE AND HOW WAS IT COMPARING TO THOSE PEOPLE ACTUALLY ON LITHIUM AND THOSE WHO WERE NOT ON LITHIUM. AS YOU CAN SEE IN THIS GRAPH IN JANUARY OF '08 WHEN THAT ARTICLE FIRST CAME OUT, THERE WAS A LOT OF ACTIVITY ON PATIENTS LIKE ME ABOUT LITHIUM, THERE WERE CONVERSATIONS TAKING PLACE, THEY CAME TO US, THERE WAS A LOT OF BUZZ ABOUT WHAT CAN WE DO ABOUT THIS? WHEN WE LAUNCHED OUR TOOL IT WAS A LITTLE LESS BUZZ AND A LITTLE MORE INTERACTION GETTING INFORMATION AND DATA INTO THE SITE. WE HAD 160 PARTICIPATE ANTS ON THIS, WE HAD ABOUT -- PARTICIPANTS ON THIS, WE HAD ABOUT 400 MATCHING CONTROLS, THERE WERE ONLY 16 PARENTS, REMEMBER, IN THE ITALIAN STUDY. SO BY LATE O8 AND INTO EARLY '09 WE WERE ABLE TO ANNOUNCE OUR PRELIMINARY RESULTS THAT IT DIDN'T APPEAR THAT LITHIUM HAD AN IMPACT ON PROGRESSION. IN FACT, THERE WERE SOME PEOPLE WHO WERE ACTUALLY HAVING A MORE RAPID PROGRESSION, IT MAY HAVE BEEN THE LITHIUM, MAY HAVE NOT, WE DIDN'T KNOW, WE DIDN'T HAVE ANY IDEA, BUT WHAT WE DID SHOW WAS THAT IT DIDN'T SEEM TO BE IMPROVING FOR THE PATIENTS WHO WERE PARTICIPATING. THERE WERE TWO NIH STUDIES THAT FOLLOWED US THAT ULTIMATELY FOUND THE SAME RESULTS AND YOU'LL SEE IT TOOK QUITE A BIT LONGER FOR THAT TO COME OUT. THE WALL STREET JOURNAL DID AN ARTICLE AT THE TIME SAYING DESPITE THE FACT THAT THIS WAS A NOVEL WAY OF DOING SOMETHING, IT SHOULDN'T BE DISMISSED AS NOT BEING USEFUL, THAT OUR ABILITY TO BE ABLE TO GATHER THAT PRELIMINARY DATA COULD HAVE ACTUALLY POSSIBLY SAVED MILLIONS OF DOLLARS BEING SPENT BY NIH TRYING TO RECRUIT INTO A TRIAL THAT ULTIMATE MALLY TURNED OUT TO BE FUTILE. THERE WAS A FOOTNOTE, IN OCTOBER OF 2017 I CAME ACROSS SOME PUBLICATIONS THAT WERE BEING DONE IN THEETHER LANDS AND U CR WHERE THEY DID A META-ANALYSIS OF ALS STUDIES WHERE THERE HAD BEEN GENETIC INFORMATION AVAILABLE AND THEY IDENTIFIED THAT THERE WAS A CERTAIN GENETIC VARIANT UNC13 WHICH SHOWED THAT PEOPLE WHO HAD THAT VARIANT ACTUALLY HAD A EFFECTIVE RESPONSE TO LITHIUM. WE DIDN'T HAVE THAT INFORMATION AT THE TIME THAT WE DID THE STUDY IN 2007 AND 8, 8 AND 9, HOWEVER, WE DECIDED TO DO THAT RATCHETS UP OUR RESPONSIBILITY, OUR TRUSTWORTHINESS. WE CAN'T JUST SIT ON THE FACT THAT WE SAID LITHIUM HAS NO IMPACT FOR PATIENTS WITH ALS, WE HAVE TO STEP BACK AND SAY FOR SOME PATIENTS WITH ALS, IT MIGHT SO WE ACTUALLY NOW ARE WORKING WITH THE RESEARCHERS IN THE UK AND NETHERLANDS, THEY'RE LOOKING TO STAND UP A MUCH LARGER STUDY, WE'LL BE PARTICIPATING IN THAT AND IT'S A MESSAGE TO OUR MEMBERS AS WELL AND TO THE ALS COMMUNITY THAT WE DON'T STOP WHEN WE FIND ONE THING, WE CONTINUE LOOKING FOR OTHERS AS NEW KNOWLEDGE STARTS TO GENERATE SO AGAIN A WAY FOR OUR PATIENTS TO CONTINUALLY HEAR THAT AND LEARN THAT. THERE'S A COUPLE OTHER THINGS I'M SORT OF BRIEFLY WANTING TO GO INTO AND I PROVIDED ALL THE REMPTSES FOR THIS AND ALL OF OUR -- REFERE NCES FOR THIS AND ALL OF OUR PUBLICATIONS ARE OPEN ACCESS, NO ONE HAS A BARRIER, WE PUBLICIZE THOSE ON OUR SITE. THIS WAS A PROSPECTIVE PIECE DONE ON THE BMJ ON SUBJECTS NO MORE, PATIENTS WANT TO PARTNER WITH US AND WANT TO HAVE AN OPPORTUNITY TO HAVE THEIR DATA BE USEFUL AND ENGAGING AND ACTUALLY CREDIBILITY TO THE SCIENCE THAT'S START TO GO EMERGE. WHAT WE FOUND, IT WAS HAPPENING SIMULTANEOUS TO THIS WAS THERE WAS A COUPLE OF ALS CLINICAL TRIALS HAPPENING. WE HAD MANY PATIENTS ON PATIENTS LIKE ME THAT WERE MONITORING THEIR RESPONSE AND THESE BLINDED STUDIES ON THEIR PROFILES ON PATIENTS LIKE ME. WE WERE STARTING TO SEE SOME INFORMATION THAT PATIENTS WERE SHARING, I THINK I MIGHT BE ON THE DRUG BECAUSE I SEEM TO HAVE THIS SIDE EFFECT OR I THINK MAYBE I'M NOT ON THE DRUG BECAUSE I'M NOT REACTING IN THE SAME WAY AS SOME OTHER PEOPLE ARE. WE DECIDED WE WOULD CONTINUE TO DO ANALYSIS OF THESE DATA, WE WOULD WATCH THE DATA AND GET A BETTER SENSE WAS THERE SOMETHING HERE WE NEEDED TO BE THINKING ABOUT, AGAIN, OUR RESPONSIBILITY IS TO OUR MEMBERS AND TRYING TO BE SURE THAT WE'RE GIVING THEM SOME SUPPORT AND INSIGHT AS WE RECEIVE THIS. WE LEARNED HERE AGAIN USING OUR MATCHING ALGORITHM AND UNDERSTANDING WHAT THE PROGRESSION WOULD TYPICALLY LOOK LIKE FOR MOST PEOPLE WITH ALS AND THEN LOOKING AT WHAT IT WAS LOOKING LIKE FOR THOSE PEOPLE WHO WERE REPORTING BEING ON THE DRUG, WHETHER THEY WERE ON THE REAL DRUG OR ON A PLACEBO, WE DIDN'T KNOW, WE STARTED MATCHING AND SORT OF CREAFTING THESE CONFIDENCE INTERVALS TO GET A BETTER SENSE ABOUT WHETHER OR NOT WE THOUGHT THERE MIGHT BE SOME IMPACT OF THE DATA THAT WE HAD. WE DECIDED TO HOLD THAT DATA BACK AND WE GAVE IT TO THE SPONSORS, THE DAY THAT THEY WERE UNBLINDING THEIR STURDY. WHAT WE WANTED TO SHOW THEM IS THAT PEOPLE ARE DOING THIS, PEOPLE ARE GATHERING DATA, PEOPLE ARE WATCHING WHAT'S HAPPENING TO THEM IN THE SAME WAY YOU'RE WATCHING WHAT'S HAPPENING TO THEM IN THE TRIAL AND IN FACT YOU MAY LEARN SOMETHING MORE FROM THE DATA THAT THEY WERE DOING ON PATIENTS LIKE ME THAN YOU LEARNED IN THE CLINICAL TRIAL SO IS THERE A WAY WHERE WE CAN FIND SOME MUTUAL BENEFIT FOR PATIENTS AT THE END OF THE DAY WHEN WE BRING THESE KINDS OF THINGS TOGETHER. SOIPG IT'S THE GENIE IS OUT OF THE BOTTLE, NO DOUBT THERE. LAST THING I WANT TO TALK ABOUT WITH THE ALS COMMUNITY IS WE ARE PART OF SOMETHING CALLED ALS UN TANGLED SO WHENEVER THERE'S SOMETHING THAT COMES OUT THAT SEEMS TO BE A MIRACLE DRUG OR SOME MIRACLE PRODUCT FOR SOMEONE WITH ALS, THERE'S A GROUP OF RESEARCHERS AROUND THE WORLD THAT GET TOGETHER AND TRY TO IDENTIFY WHERE IS THE SOURCE OF INFORMATION THAT WE CAN START TO LOOK AT TO MAKE ANY SENSE OF THIS. IS THAT A LEGITIMATE CLAIM? IS THERE ANYTHING CREDIBLE OUT THERE THAT WE CAN START TO LOOK AT THEN SHOULD WE START TO THINK ABOUT STUDYING IT? LUNACEN WAS AN INTERESTING EXPERIMENT, IT WAS BASED ON A PATIENT WHO ACTUALLY HAD STARTED USING THIS ON HIS OWN AND URLT MALTLY STARTED TO HAVE A REVERSAL OF HIS ALS SYMPTOMS, NOT A SLOWING OR PROGRESSION SH HE WAS GAINING BACK FUNCTION, SO RICHARD BEDLAK WHO IS THE CLINICIAN AT THE ALS CLINIC IN DUKE WHO IS -- LEADS THIS ALS UN TANGLED THOUGHT WOW THIS IS INTERESTING, A REVERSAL IS VERY DIFFERENT THAN A SLOWING OR PROGRESSION. MAYBE WE SHOULD THINK ABOUT THIS WE DEVELOPED TOGETHER WHAT WE CALLED THIS VIRTUAL TRIAL, IT TOOK PLACE WHERE THE PATIENTS HAD TWO SITE VISITS AT DUKE, ONE AT THE BEGINNING AND ONE AT THE END AND EVERYTHING ELSE WAS DONE VIRTUALLY, EVERYTHING ELSE WAS DONE THROUGH BIDIRECTIONAL COMMUNICATION WITH THE PATIENT, THEN WITH THE CLINIC AT DUKE AND THEN WITH PATIENTS LIKE ME'S RESEARCHERS AS WELL, SO IT REALLY DEMONSTRATED THAT YOU CAN PATIENTLY CREATE A STUDY ESPECIALLY FOR PEOPLE FOR WHOM TRAVEL TO GET TO A CLINICAL SITE IS VERY CHALLENGING AND HOW THAT MADE A DIFFERENCE FOR PATIENTS. IS. YOU CAN SEE ON THIS THE SAME CHARACTERISTICS I SHOWED YOU BEFORE, THE DIFFERENCE BETWEEN A TRADITIONAL STUDY AND THE LUNASI N STUDY, THE TRADITIONAL STUDY IS SORT OF TAKEN ON TRUST THAT IT'S GOING ON IMPROVE THE HEALTH OF OTHERS. WE CAN STARTED TO SEE THINGS IN REALTIME IN A VIRTUAL TRIAL AND YOU CAN GO DOWN THIS LIST AND SEE ALL THE DIFFERENT ADVANTAGES THAT THAT TYPE OF MODEL COULD AFFORD NOT ONLY TO PATIENT BUT ULTIMATELY COULD AFFORD TROARCH ERS AS WELL TRAFNLGT I'LL SHIFLT GEARS AND MOVE INTO THE -- I'LL SHIFT GEARS AND MOVE INTO THE SOCIAL LICENSE AND HOW IT COULD BE APPLICABLE TO THIS CONFERENCE. THE TIMER ON HERE IS NOT WORKING ON HERE, SO YOU CAN GIVE ME A HEADS-UP IF I'M STARTING TO RUN LONG. OKAY. GOOD. A NEW ERA OF DATA MINING IS WHAT I'M TALKING ABOUT HERE. SO THIS IDEA OF MINING DATA, DIGITALLY, WHETHER IT'S ON SOCIAL MEDIA OR OTHER MECHANISMS REALLY DOES REQUIRE US TO START ASKING SOME QUESTIONS AND IN THE CONTEXT OF SOCIAL LICENSE I WOULD LIKE YOU TO BEGIN THINKING ABOUT THESE QUESTIONS. LY YOU MAY LEAVE HERE TODAY AND SAY OH, THAT'S JUST ANOTHER BUZZWORD, I DON'T THINK THIS HAS ANY TEETH, BUT I WOULD LIKE YOU TO BEGIN THINKING ABOUT IT BECAUSE I ACTUALLY THINK IT DOES AND IN THE APPLICATIONS I'VE TRIED TO WORK WITH IT OVER THE LAST SIX OR SEVEN MONTHS THAT I'VE BEEN STUDYING SOCIAL LICENSE, I KEEP SEEING SOMETHING THAT KEEPS REPS NAITDING FOR ME AS BEING APPLICABLE AND -- RESONATING FOR ME AS BEING APPLICABLE AND SOMETHING THAT RIERPZ US TO HAVE A SOCIAL CONTRACT AS WE HAVE THIS EVER EVOLVING SOCIAL AGE AND TRYING TO KEEP PAIMS WITH THE PROCESSES THAT ARE NEW AND EMERGING WHILE AT THE SAME TIME EMPOWERING US TO HAVE CONTROL OVER WHERE THE DATA GOES AND HOW IT'S USED AND THAT'S WHAT THIS WHOLE NOTION OF SOCIAL LICENSE COULD CREATE, A WAY FOR THAT TO START HAPPENING. THERE ARE SOME ENTITIES WORKING HARD ON ENSURING THAT PEOPLE KNOW WHERE THEIR DATA IS GOING TO BE GOING, BUT I THINK WE NEED THAT MORE BROADLY APPLIED AND WE NEED TO HAVE THIS SOCIAL CONTRACT UNDERSTOOD IN SOCIAL MEDIA COLLECTORS AS WELL AS IN RESEARCH. THEN WE HAVE TO THINK ABOUT WAYS OF BEING ABLE TO DETERMINE WHO IS TRUSTWORTHY ENOUGH TO EARN THAT SOCIAL LICENSE? THERE'S GOING TO BE BAD ACTORS OUT THERE AND WE HAVE TO FIGURE OUT WAYS OF KNOWING THAT THE DATA THAT WE'RE GENERATING, WHETHER IT'S VIA A FIT BIT OR SOME OTHER SENSOR DEVICE OR WHETHER IT'S IN A CLINICAL TRIAL SK DONE AGAIN AGAINST THOSE KEY COMPONENTS OF LEGITIMACY, CREDIBILITY AND TRUST BY BEING TRANSPARENT, BEING FAIR, ENSURING THAT WE HAVE JUSTICE WITHIN THE MODEL. SO ALL THESE THINGS, THE CONCEPT STARTS TO BEGIN TO GEL. THEN SHOULD AN ENTITY, ANY DATA COLLECTOR THAT'S GATHERING OUR DATA, AGAIN WHRRKS IT'S A RESEARCHER IN -- WHETHER IT'S A RESEARCHER IN A CLINICAL TRIAL, HAVE TO SHOW THAT THEY HAVE OBTAINED AND UNDERSTOOD CONSENT, I'M PUTTING UNDERSTOOD IN THERE INTENTIONALLY, FROM PEOPLE FROM WHOM THE DATA COMES. WHEN I SAY THAT, ALL OF YOU WHO ARE IN TRADITIONAL RESEARCH SAY WE ALWAYS GET INFORMED CONSENT, WE WOULDN'T MOVE FORWARD WITHOUT INFORMED CONSENT BUT I WANT TO CHALLENGE YOU IS THAT UNDERSTOOD CONSENT. DO PEOPLE KNOW EXACTLY WHAT THEY'RE DOING WHEN THEY'RE MOVING INTO THIS? AND WE HAVE CHALLENGES ON THAT REGARD ALL OVER THE PLACE SO I THINK IT'S JUST ANOTHER WAY OF BEING ABLE TO ASK OURSELVES THAT QUESTION ON A SOCIAL CONTRACT BASIS WITH THE PEOPLE THAT WE'RE DOING THESE INFORMED CONSENT RELATIONSHIPS WITH, WHAT IS IT THAT THIS PARTICULAR GROUP OF PEOPLE NEED TO UNDERSTAND AROUND THIS PARTICULAR TRIAL OR AROUND THE DATA THAT'S BEING COLLECTED FROM A PARTICULAR SENSOR IN ORDER TO UNDERSTAND THAT THAT DATA COULD FIND ITSELF SOMEWHERE ELSE AND THAT THAT DATA COULD HAVE USE AND APPLICABILITY SOMEWHERE ELSE, AND FOR MOST PATIENTS, THAT'S OKAY, SO LONG AS THEY KNOW THAT IT'S GOING FOR SOMETHING GOOD, THAT THERE'S GOING TO BE SOMETHING THAT COMES OF IT THAT WILL BENEFIT SOMEONE ELSE OR POTENTIALLY EVEN THEM. SO I THINK IT'S NOT SO MUCH THAT THERE'S GOING TO BE THIS WALL THAT WILL GO UP THAT WILL SAY WELL MY DATA CAN'T GO FROM YOU OVER THERE, THERE NEEDS TO BE A WAY OF HAVING A GATE OPEN THAT SAYS MY DATA CAN GO FROM YOU TO OVER THERE BECAUSE THAT GROUP OVER THERE HAS EARNED SOCIAL LICENSE BASED ON THEIR PERFORMANCE AND TRUSTWORTHINESS SO YOU CAN SEE HOW THIS CAN GOIN CREATE A NETWORK THAT ULTIMATELY ONE CAN LEAD TO ANOTHER TO SAY SHARING DATA WITH THIS GROUP OVER HERE CAN BEGIN TO ANSWER QUESTIONS WE COULDN'T ANSWER IN OUR ORIGINAL STUDY. SO IT'S A WAY OF SORT OF THINKING ABOUT AND FRAMING YOUR IDEAS AS WE MOVE FORWARD WITH THIS NEW EMERGING MODELS OF DATA COLLECTION. AT THE CROSSROADS OF SMOAD AND TRIALS BOTH ARE NOT SEEKING SOMETHING FROM THE OTHER THAT ACTUAL REQUIRES LEGITIMACY, CREDIBILITY AND TRUST. I'M SUGGESTING THAT'S NOT JUST RESEARCHER WHO NEED TO EARN SOCIAL LICENSE, I WOULD SAY SOCIAL MEDIA NEEDS TO EARN SOCIAL LICENSE FROM RESEARCHERS AND WE'LL GO FLEW A COUPLE WAYS WHY I THINK THAT'S TRUE. SO THE TEMPORAL ENGZ AND OPPORTUNITIES -- SO THE CHALLENGES AND OPPORTUNITIES FOR CLINICAL TRIALS, I'M WANT GOING TO GO THROUGH EACH ONE OF THESE, I THINK THEY'RE TRADITIONALLY NOT DESIGNING TRIALS WITH PATIENTS INVOLVED, I THINK WE'RE SEEING THAT CHANGE OVER THE LAST NUMBER OF YEARS, BUT THE CURRENT AND EMERGING MODEL SAYS ARE THE AREA WHERE WE HAVE OPPORTUNITIES TO REALLY START THINKING ABOUT IF I WANT TO EARN SOCIAL LICENSE , I NEED TO HAVE PATIENTS ENGAGED IN THE DESIGN ACROSS THE ENTIRE LIFE CYCLE OF THE STUDIES THAT WE'RE DOING. WE NEED TO PRIORITIZE THE CULTURE OF RETURNING RESULTS AND PERSONALIZING THOSE AND WE'RE SEEING THAT MORE AND MORE. I THINK IT WAS BROUGHT UP YESTERDAY THE END OF ONE STUDY IDEA THAT FOR ME I WANT TO KNOW WHAT HAPPENS NOTICE WHEN I DO THIS IS BEGINNING TO HAVE SOMETHING THAT WE CAN BEGIN ON HARNESS THE POWER OF THE N OF 1 AND THEN GATHERING AND GATHERING AND GATHERING MORE AND MORE OF PARTICIPANTS WHO ARE DOING N OF 1'S TO BETTER UNDERSTAND IS THAT SHOWING US SOMETHING THAT'S A TREND OR SOMETHING THAT WE COULD LOOK MORE AT FOR GENERALIZING VERSUS JUST PERSONALIZING. MAKING TRIALS PROTOCOLS ACCESSIBLE IS SOMETHING THAT'S BEEN A LARGE CALL OUT THERE AND CAN TRANSPARENT ABOUT THAT. AND THEN PUBLISHING TRIALS AND NOT JUST PUBLISHING THE POSITIVE RESULTS BUT ALSO THE NEGATIVE RESULTS, WE LEARN AS MUCH FROM NEGATIVE RESULTS AS WE DO FROM POSITIVE RESULTS. SO FOR SOCIAL MEDIA, YOU KNOW, WE HAVE A WHOLE NEW WORLD OUT THERE WHERE WE HAVE GONE THROUGH AN EVOLUTION OF DEVELOPMENT OVER TIME FROM THE EARLY '70S ALL THE WAY UP THROUGH TODAY WHERE TODAY WE HAVE I WAS WATCHING A PROGRAM THIS MORNING THAT WAS SHOWING AN AI ROBOT WHO HAD BEEN FED NEGATIVE MESSAGING, NEGATIVE MESSAGING, AND EVERY TIME HE WOULD BE ASKED A QUESTION, HE WOULD GIVE IT IN THE CONTEXT OF SOMETHING NEGATIVE. AS OPPOSED TO BEING JUST GIVEN ACCESS TO A WHOLE BROAD SWATH OF INFORMATION AND THEN MAKING THE DECISION THAT THIS SEEMS TO BE A BIGGER PRIORITY THAN THAT, HE WAS JUST -- I'M CALLING HIM HE, IT WAS JUST FOCUSED ON THE NEGATIVE MESSAGING. SO WE HAVE AN OPPORTUNITY WHERE DATA SHARING IS NOW A COMMON EXPERIENCE, PEOPLE ARE DOING IT ALL THE TIME, EVERY ONE OF US IS DOING TFER DAY AND EVERY HOUR OF THE DAY WITH OUR -- DOING IT EVERY DAY AND EVERY HOUR OF THE DAY WITH OUR PHONES AND OTHER WAYS WE CONNECT. NETWORKS LIKE PATIENTSLIKEME FOR EXAMPLE OFFER INSTANTANEOUS CONNECTION, TWITTER AND OTHER PLATFORM AS WELL. THEY WILL BE DIFFERENT IN THEIR ABILITY TO BE A ROBUST SORT OF QUANTIFIABLE DATA SITE RIGHT OFF THE BAT BUT THE DATA WITHIN IT THERE'S NO DOUBT THAT WE COULD START TO HARNESS IT SO LONG AS WE HAVE SOCIAL LICENSE TO MOVE FORWARD AND USE THAT DATA IN A TRUSTWORTHY AND SOCIALLY RESPONSIBLE WAY. SO I THINK I DON'T NEED TO GO INTO EACH ONE OF THESE BULLETS. I THINK WE CAN ALL SEE WHERE THE EMERGING TRENDS ARE AND WHERE WE ACTUALLY ARE, AND WE ARE AT THE CROSSROAD OF HAVING REALLY WONDERFUL BREAKTHROUGHS BE POSSIBLE BECAUSE OF THE TECHNOLOGIES WE HAVE AVAILABLE TODAY AS WELL AS THE CONTINUING EMPOWERMENT OF PEOPLE, NOT JUST PATIENTS, BUT CONSUMERS AS WELL IN TRYING TO ANSWER QUESTIONS WITH DATA IN WAYS THAT WE WILL NEVER EVEN THOUGHT ABOUT DOING A FEW YEARS AGO. ACTUAL I WOULD HAVE SAID A COUPLE OF YEARS AGO IF SOMEONE ASKED ME, YOU KNOW, WHAT DO PATIENTS THINK -- I THINK I ACTUALLY DID WHEN SOMEONE ASKED ME THE QUESTION, WHAT DO PATIENTS THINK ABOUT HEALTH DATA I SAID I DON'T THINK THEY THINK ABOUT IT IN THE CONTEXT OF DATA AT ALL. IT'S INFORMATION ABOUT THEM AND IT'S IN A RECORD SOMEWHERE, RIGHT, AND YOU'RE USING IT FOR SOME PURPOSE THAT COULD BE USEFUL, RIGHT? BUT WE AS RESEARCHERS SORT OF TURNED IT INTO DATA AND THAT THEN SOMEHOW NEEDED TO GET TRANSLATED BACK TO PATIENTS WHO I THINK ARE NOW SHOWING US AGAIN , NO, IT'S ABOUT LIVING, IT'S ABOUT ME, IT'S ABOUT MY REAL LIFE, IT'S NOT ABOUT THE DATA POINT, RIGHT? SO WE'RE AT THIS CROSSROADS AND I'M SUGGESTING THERE'S A BI DIRECTIONAL SOCIAL LICENSE THAT NEEDS TO BE EARNED AND THAT EACH OF THE CLINICAL TRIALS AS WELL AS THE SOCIAL MEDIA ENVIRONMENTS HAVE AN OPPORTUNITY TO BEGIN THINKING ABOUT THE LANGUAGE OF EACH OTHERS' COMMUNITIES AND START ANSWERING SOME OF THESE VERY IMPORTANT QUESTIONS THAT ACTUAL WHEN WILL ANSWER RS TO THEM, WE WILL HAVE STARTED TO GAIN AND EARN THAT SOCIAL LICENSE AMONGST EACH OTHER. SO IF YOU THINK ABOUT THE IDEA OF THIS LEGITIMACY, CREDIBILITY AND TRUST AS BEING SORT OF AN UP WARD FLOW AND WHERE THERE ARE AREAS WHERE YOU CAN FALL SHORT ON EARNING SOCIAL LICENSE, LET'S SAY YOU'RE NOT LEGITIMATE, WELL, YOU'RE GOING TO BE REJECT UNDERSTAND RIGHT OUT. LET'S SAY YOU GET BEYOND LEGITIMACY AND YOU ARE STARTING TO DEMONSTRATE THAT YOU'RE CREDIBLE, WHETHER YOU'RE A SOCIAL MEDIA ENVIRONMENT OR YOU'RE A RESEARCHER, YOU CAN CONTINUE MOVING UP THAT LADDER. BUT ANY STEP ALONG THE WAY COULD PUSH YOU BACK DOWN. SO THE QUESTIONS REALLY TO BE THINKING ABOUT AND WHEN I ASK THIS QUESTION PUT IT IN THE CONTEXT OF THE HAT YOU'RE WEARING. DO THEY RESPECT US? DO RESEARCHERS RESPECT THE PEOPLE WHO ARE PARTICIPATING ON SOCIAL MEDIA ENVIRONMENTS? DO PEOPLE WHO ARE PARTICIPATING ON SOCIAL MEDIA ENVIRONMENTS RESPECT THE CONSTRAINTS THAT RESEARCHERS ARE FUNCTIONING UNDER? ARE THEY LISTENING? WE HEARD A LOT ABOUT LISTENING YESTERDAY, IT WAS BROUGHT UP AGAIN THIS MORNING, AND AGAIN, KEEP THIS IN MIND, I WOULD BE ASKING THE QUESTIONS ON BOTH SIDES OF THAT CROSSROADS. DO THEY LET US PARTICIPATE? SO CAN RESEARCHERS COME INTO A SOCIAL MEDIA ENVIRONMENT AND FEEL COMFORTABLE PARTICIPATING OR ARE THEY GOING TO FEEL VERY, YOU KNOW, I THINK WE HEARD A LITTLE BIT ABOUT CLINICIANS BEING RETICENT, I'M NOT SO SURE HOW WE COULD PARTICIPATE. PARTICIPATING CAN BE JUST BEING THERE. IT DOESN'T NECESSARILY NEED TO BE ENGAGING. ARE THEY TRANSPARENT, CAN WE BELIEVE WHAT THEY SAY, ARE THEY RESPONSIVE TO OUR ISSUES, AND LASTLY, CAN WE TRUST THEM? SO I THINK THESE ARE JUST REALLY BASIC QUESTIONS. THEY'RE ALMOST LIKE KINDERGARTEN QUESTIONS, RIGHT? YOU HAVE A KINDERGARTENER IN FRONT OF YOU, YOU SAY YOU NEED TO LEARN HOW TO RESPECT, I WANT YOU TO START TO LISTEN, YOU CAN PARTICIPATE WITH EVERYONE ELSE BUT YOU HAVE TO SHOW US WHAT YOU'RE GOING TO BE DOING AND SHOW AND TELL, WE DO THAT KIND OF STUFFER, THESE RNLT COMPLEX QUESTIONS -- THESE ARE NOT COMPLEX QUESTIONS, THEY'RE VERY BASIC HUMAN QUESTIONS. WHEN WE BEGIN TO ANSWER THEM IN THE CONTEXT IN WHICH WE WANT TO WORK AND PARTNER THEY BECOME VERY VALUABLE WHEN WE ARE HONEST AND TRANSPARENT ABOUT HOW WE'RE GOING TO ANSWER THEM TOGETHER. EARNING SOCIAL LICENSE, I JUST HAVE A FEW TIPS I GUESS THAT I WOULD LIKE THREEF WITH YOU TO START THINKING ABOUT -- TO LEAVE WITH YOU TO START THINKING ABOUT WAYS THAT YOU COULD AS A SOCIAL MEDIA COMMUNITY START TO BUILD THE LEGITIMACY, CREDIBILITY AND TRUST OF CLINICAL TRIALISTS AND VICE VERSA. BUT PEOPLE IN SOCIAL MEDIA COMMUNITIES MAY BE INTERESTED IN CLINICAL TRIALS BUT I HAVE TO TELL YOU WE HAVE LEARNED THAT MANY PEOPLE ARE NEVER ASKED WHETHER THEY WANT TO PARTICIPATE IN A TRIAL OR NOT. SO WE ABSOLUTELY HAVE TO CHANGE THAT. SO IF YOU FAMILIARIZE YOURSELF WITH THE SOCIAL MEDIA COMMUNITY OF INTEREST AND YOU START TO DEMONSTRATE THAT YOU HAVE A RESPECT FOR THAT COMMUNITY, THAT YOU ARE TRYING TO UNDERSTAND THE WAYS THAT THEY COMMUNICATE, WHAT ARE THE SOCIAL NORMS WITHIN THAT COMMUNITY BECAUSE THEY DO VARY. THESE ARE WAYS THAT RESEARCHERS CAN BEGIN TO SORT OF ASK THEMSELVES QUESTIONS ABOUT HOW DO I ENGAGE IN THIS ENVIRONMENT AND HAVE IT BE MEANINGFUL FOR ME YOU NEED TO START THINKING ABOUT UNDERSTANDING THE SIMILARITIES AND DIFFERENCES OF A CLINICAL TRIAL COMMUNITY AND A SOCIAL MEDIA COMMUNITY, THEY ARE VERY DIFFERENT, YET THEY HAVE A HUMAN ELEMENT THAT'S THE SAME. WE'RE TRYING TO ANSWER IMPORTANT QUESTIONS. WE'RE TRYING TO SHARE INFORMATION TO GET TO A POINT WHERE WE ACTUALLY HAVE SOME SOLUTIONS, AND MOST IMPORTANTLY, SHARING WHAT YOU LEARN BACK TO THE COMMUNITY SO IF YOU'RE A RESEARCH GROUP AND YOU'RE TRYING TO ENGAGE ON A SOCIAL MEDIA PLATFORM AND ENGAGE WITH PEOPLE WITHIN THAT GROUP, YOU DO THAT BEST BY TRANSPARENTLY GOING BACK AND SAYING HERE IS WHAT WE'VE BEEN LEARNING, I'M WONDERING WHETHER YOU CAN HELP US BETTER UNDERSTAND WHETHER WE GOT THAT RIGHT. THOSE ARE WAYS OF BEING ABLE TO ACTUALLY RESPECT THE ASPECT OF THAT COMMUNITY. THEN EARNING THE SOCIAL LICENSE FROM THE CLINICAL TRIAL COMMUNITY I THINK FOR SOCIAL MEDIA ACTIVELY ENGAGING IN SHARING SUBSTANTIVE INSIGHTS AND KNOWLEDGE IS CRITICALLY IMPORTANT. YOU KNOW, YOU HAVE INFORMATION THAT RESEARCHERS NEED AND WANT. YOU ARE SHARING IT IN WAYS THAT ISN'T NECESSARILY ALWAYS EASILY RETRIEVED, SO LEARNING WAYS OF BEING ABLE TO START PARTICIPATING MORE PROACTIVELY AND UNDERSTANDING THE KIND OF INFORMATION THAT YOU ARE ALREADY SHARING THAT COULD BE ULTIMATELY MORE VALUABLE IF IT WERE COLLECTED IN A CERTAIN WAY THROUGH YOUR SOCIAL MEDIA TOOLS AND MECHANISMS. THE OTHER THING IS I THINK WE HEARD SOMEONE SAY THIS YESTERDAY , YOU KNOW, THERE COULD BE DOGS BEHIND OR CATS BEHIND THAT COMPUTER SCREEN OR THAT THE iPHONE, YOU NEED TO START SHOWING THAT YOU'RE MADE UP OF REAL PEOPLE. WE DID A STUDY A FEW YEARS AGO, WE HAD 600 VOLUNTEERS OF OUR PATIENTSLIKEME COMMUNITY GIVE US ACCESS TO ALLOW US TO BE ABLE TO GO IN AND SEE IF WE COULD FIND THEM IN CLAIMS DATA, JUST BASED ON THE DATA WE HAD FROM THEIR PATIENTSLIKEME PROFILE. 96 PERCENT OF THEM WE WERE ABLE TO FIND JUST BASED ON THE DATA THAT THEY HAD PROVIDED ABOUT THEIR DIAGNOSES, WE WERE ABLE TO FIND NEARLY 78 PERCENT OF THEIR TREATMENTS THAT THEY REPORTED ON IN THE CLAIMS DATA, IN FACT, WHEN WE WENT BACK TOLT PATIENTS AND SAID GEE THERE'S A BIT OF 25 PERCENT O F THIS WE'RE MISSING HERE, THEY SAID WELL I STOPPED TAKING THAT DRUG A LONG TIME AGO SO IT'S NOT ON MY PROFILE. IT'S INTERESTING THAT WHEN WE WERE ABLE TO DEMONSTRATE THAT THESE ARE REAL PEOPLE, THEY ARE PROVIDING REAL INFORMATION, WE CAN ACTUALLY SHOW THAT INFORMATION HAS SOME RELEVANCE BACK TO SOME REAL CLINICAL INFORMATION THAT WAS COLLECTED BY CLINICIANS AT THE POINT OF CARE. I THINK IT'S ALSO IMPORTANT FOR SOCIAL MEDIA PARTICIPANTS TO UNDERSTAND THE REGULATORY AND COMPLIANCE REQUIREMENTS THAT RESEARCHERS MUST OPERATE UNDER AND THEY CAN BE ONEROUS AND THEY CAN BE DIFFICULT TO NAVIGATE AND I THINK SOMETIMES WE IN SOCIAL MEDIA SORT OF TRY TO PUSH THROUGH SOME OF THAT AND NOT NECESSARILY RESPECT IT. WHEN WE WORKED WITH DEVELOPING OUR DRUG MONITORING PLATFORM AND WORK WITH PHARMA, A LOT OF TIMES PHARMA WOULD SAY WELL WE CAN'T DO IT THAT WAY, AND I WOULD SAY, WELL, I DON'T SEE THAT IN THE REGULATION, CAN YOU TALK ABOUT WHY YOU'RE SAYING WE CAN'T DO IT THAT WAY? WHAT WE LEARNED WAS THAT IT WAS AN INDUSTRY STANDARD, IT WASN'T I AM POASTLESSED BY THE REGULATOR. FERLTZ CAN WE THINK ABOUT WAYS OF BEING ABLE TO DO IT OUR WAY, WE'RE NOT VIOLATING ANY REGULATORY REQUIREMENT THAT YOU HAVE, WE'RE PUSHING THE ENVELOPE AND WE WERE GIVEN THE FREEDOM TO DO THAT BECAUSE WE STEPPED BACK, WE RESPECTED WHAT THEY HAD TO COMPLY WITH, BUT THEN WE PUSHED BACK AND SAID YOU KNOW WHAT, THIS IS NOT SOMETHING THAT APPLIES IN OUR ENVIRONMENT. ONE WAS SENDING REMINDER LETTERS TO THE HEALTHCARE PROFESSIONAL TO GET MORE INFORMATION. THEY WANTED US TO KEEP SECOND REMINDER INFORMATION TO THE PATIENTS TO GET MORE INFORMATION AND WE SAID THE PATIENT IS GOING TO GIVE US AS MUCH INFORMATION AS THEY GIVE US. THE MORE E-MAILS WE SEND TO THEM WE ARE NOW VIOLATING AN ANTI- SPAM REQUIREMENT WE HAVE AS A COMPANY SO YOU CAN SEE THERE WAS A BIDIRECTIONAL THING THERE. SO BEING TRANSPARENT ABOUT THE POTENTIAL FOR PARTICIPANT INITIATED ACTIONS SUCH AS UN BLINDING POOLING DATA AMONGST PARTICIPANTS AND POSTING INDIVIDUAL FINDINGS ONLINE IS OF GREAT CONCERN TO RESEARCHERS AND I THINK WHAT WE HAVE DONE AT PATIENTSLIKEME IS WE HAVE COMMUNICATED THAT REGULARLY TO OUR POPULATION AND SAID WHEN YOU ARE ADDING THIS INFORMATION, WE ARE NOT GOING TO BE DOING ANALYSIS ON THIS DATA WHEN THIS IS AN ACTIVE TRIAL. YOU NEED TO UNDERSTAND WHY WE RESPECT THE CONSTRAINTS THAT THE TRIALISTS ARE UNDER, WE RESPECT THAT YOU WANT TO MONITOR INFORMATION, WE WILL WAIT UNTIL AFTER AND THEN WE CAN SHARE THAT INFORMATION LATER. THEY CAN SHARE AS MUCH AS THEY WANT IN THEIR PROFILE, WE'RE NOT SENSORING, BUT WE WEREN'T GOING TO GO DO ANALYSIS ON IT AT THAT POINT. ULTIMATELY SHARING ACCOUNTABILITY FOR ACHEEFGHT BEST OUTCOMES OF A CLINICAL TRIAL BY ADDRESSING SPECIFIC CONCERNS ABOUT THE TRIAL DESIGN, THE PARTICIPANTS HAVE A LOT TO SAY ABOUT WHAT WORKS AND DOESN'T WORK, I THINK WE HAVE TO BE MORE CAREFUL ABOUT LISTENING TO THAT. YOU'LL HAVE GREATER SUCCESS WITH YOUR CLINICAL TRIAL RECRUITMENT AND GREATER SUCCESS WITH RETAIN ING PEOPLE IN THE CLINICAL TRIAL AND THE OUTCOME WILL BE BETTER BECAUSE YOU'LL HAVE HAD A BETTER PARTNERSHIP AS A RESULT. SO I'LL LEAVE YOU WITH THIS QUOTE THAT CAME FROM THE SUBJECTS NO MORE ARTICLE THAT WAS IN THE BMJ. PATIENTS HAVE NEW TOOLS AT THEIR DISPOSAL AND THEY'RE GOING TO HOLD US ACCOUNTEDDABLE IN NEW AND NECESSARY WAYS. WE HAVE NOT GOT IT RIGHT NECESSARILY ALL THE TIME AND WE MAY BE DOING CERTAIN THINGS THAT AGAIN ARE INDUSTRY STANDARD OR RESEARCHER STANDARDS THAT AREN'T NECESSARILY REQUIRED BUT WE'VE ALWAYS DONE IT THAT WAY. WELL, MAYBE WE CAN BEGIN THINKING ABOUT DOING IT ANOTHER WAY IN ORDER TO BE ABLE TO USE THE INFORMATION THAT PATIENTS ARE WILLING AND INTERESTED IN SHARING WITH US. THEY'VE ALREADY LAID THE GROUNDWORK. WE HAVE 630,000 PEOPLE WHO HAVE ACTUALLY SAID YOU KNOW WHAT, I'M GOING TO GO OUT THERE AND PUT MY PROFILE OUT THERE AND ACTIVELY ENGAGE. THERE ARE OTHER GROUPS THAT YOU HEARD ABOUT YESTERDAY THAT ARE DOING THE SAME ALL THE TIME. SO WE NEED TO HELP THEM TO CONTINUE TO BUILD ON THEM IN THE WAY THAT WE DID WITH THE LITHIUM TOOL, IT CAME TOWLSZ WITH THEIR EXCEL SPREADSHEETS AND THIS DOCUMENT AND THAT DOCUMENT AND WE SAID LET'S PUT THIS INTO SOMETHING THAT ACTUALLY COULD HAVE SOME RESEARCH LEGITIMACY, CREDIBILITY AND ULTIMATELY EARN YOUR TRUST. SO I'LL LEAVE YOU WITH THAT AND OPEN THE FLOOR TO QUESTIONS AND I APPRECIATE THE OPPORTUNITY TO BE ABLE TO INTRODUCE SOMETHING NEW AND DIFFERENT FOR YOU TO THINK ABOUT AND WOULD WELCOME FEEDBACK FROM YOU AT ANY POINT IN TIME AS TO WHETHER OR NOT SOCIAL LICENSE SEEMS TO RESONATE AND WHETHER IT'S A DIRECTION WE MIGHT WANT TO HEAD IN. THANK YOU. [APPLAUSE] >> HEY THERE. THAT WAS A GREAT SPEECH. THANK YOU SO MUCH FOR SHARING ALL THE INSIGHTS THAT YOU'VE LEARNED OVER THE YEARS. I'M CURIOUS WHAT THE EXPERIENCE HAS BEEN AS A FOR PROFIT COMPANY AND WHETHER OR NOT TRANSPARENCY IN TERMS OF HOW PEOPLE MAKE MONEY OFF OF MINING THIS DATD HAS -- DATA HAS COME INTO PLAY OR HAS BEEN A CONCERN FROM THE PATIENT SIDE. >> Sally Okun: IT'S A GREAT QUESTION AND MAKES US WORK HARD ER AS BEING AS TRANSPARENCY AS WE CAN. OUR TERMS OF USE AND PRIVACY POLICY AND OPEN POLICY WHICH IS A RELATIVELY UNUSUAL POLICY TO HAVE. OPENNESS POLICY WAS DESIGNED IN 2004 WHEN WE FIRST STARTED THE COMPANY WITH THE IDEA THAT WE BELIEVE OPENNESS SPORNT AND THE OPPORTUNITY TO CREATE VALUE FROM DATA THAT WAS NOT PREVIOUSLY BEING COLLECTED WAS EQUALLY IMPORTANT AND THAT THE ONLY WAY WE FELT THAT WE COULD PURSUE THAT ACTIVELY AND DO IT WELL AND RAPIDLY WAS TO GATHER INVESTMENT MONEY TO BE ABLE TO DO THIS. IF WE DID THIS AS A STUDY 17 YEARS LATER POSSIBLY WE MIGHT HAVE HAD A FEW FINDINGS. SO THERE WAS REAL INTENTION WITH BEING A FOR PROFIT COMPANY AND DECIDING THAT WE WOULD MOVE IN THAT DIRECTION. WHENEVER WE'RE WORKING WITH ANY PROJECTS THAT WE'RE DOING WITH EXTERNAL RESEARCHERS WHETHER IT'S PHARMA OR WHOMEVER IT MIGHT BE, WE'RE ALWAYS TRANSPARENT ABOUT WHO OUR PARTNER S WE HAVE ACTUALLY TURNED DOWN PROJECTS WHEN EXTERNAL PARTNERS HAVE SAID I DON'T WANT THE PATIENTS TO KNOW THAT IT'S US DOING THE WORK AND WE'RE LIKE WELL THEN WE DON'T DO THE WORK, THAT'S JUST HOW IT IS. SO WE TRY REALLY HARD TO MAKE THAT ONE OF OUR CORE VALUES THAT WE ADHERE MOST TO. WE'VE RECENTLY HAD -- WE'RE DOING A PUBLICATION ON THIS THAT WILL COME OUT I'M SURE WITHIN THE NEXT COUPLE MONTHS, BUT THERE'S INCREASING, I'M SURE THIS IS NOT NEWS TO ANY OF YOU, INCREASING USE OF DATA INAPPROPRIATELY BEING SCRAPED FROM VARIOUS PLACES. WE HAVE IDENTIFIED QUICKLY THAT THERE WERE FAKE ACCOUNTS THAT WERE BEING CREATED AT ONE TIME. WE HAVE WAYS OF BEING ABLE TO IDENTIFY THIS VERY FAST. THEY WERE SHUT DOWN IMMEDIATELY. WHAT WE IDENTIFIED WAS THAT AT SOME FUTURE POINT SOME OF THAT DATA WAS GOING TO BE PUT INTIE A POSTER AND AGAIN WE IDENTIFIED THAT -- PUT INTO A POSTER AND AGAIN WE IDENTIFIED THAT PRETTY QUICKLY BALLS WE MONDAY MONITOR THESE ALL THE TIME. THAT WAS THEY USESSED DATA SCRAPED FROM A FEW PROFILES, NOT VERY MUCH, BUT THEY USED IT, WE WENT BACK AND SAID YOU NEED TO RETRACTED THIS, THIS CANNOT BE PRESENTED AT THE CONFERENCE, YOU DID NOT RECEIVE APPROVAL. WE ACTUALLY GOT IT RETRACTED, IT GOT REMOVED FROM THE CONFERENCE PROCEEDINGS, IT HAD A REPRIMAND TO THE ETHICS BOARD AT THAT PARTICULAR INSTITUTION, THFNTS A HEALTH RESEARCH GROUP -- THIS WAS NOT A HEALTH RESEARCH GROUP, TSMS A COMPUTER SCIENCE GROUP. THE COMPUTER SCIENCE GROUP SEEMED TO HAVE THE SENSE THAT IF THE DATA IS OUT THERE, I CAN USE IT. SO WE'RE IDENTIFYING THAT THERE'S SORT OF A DIGITAL TRESPASS THAT'S OCCURRING SP WE ARE TAKING SOME LEADERSHIP ROLE IN BEING TRANSPARENT ABOUT THAT. SO IT'S TRICKY, IT'S A FUNNY ROAD TO NAVIGATE IN TERMS OF HELPING PEOPLE UNDERSTAND THAT THERE IS VALUE IN YOUR DATA, WE ARE A SITE THAT SPENT A LOT OF MONEY TO CREATE PLATFORM TO COLLECT T WE WANT TO BE ABLE TO GET IT OUT THERE BUT WE HAVE TO CHARGE PEOPLE IN ORDER TO BE ABLE TO DO THAT AND FOR THE MOST PART PEOPLE UNDERSTAND, IF THEY DON'T AND THEY DON'T LIKE IT, THEN THEY MOVE O THANKS FOR THE QUESTION. -- THEN THEY MOVE O THANKS FOR THE QUESTION. >> THANKS FOR THE PRESENTATION. FROM A PATIENT POINT OF VIEW, THERE ARE NOW A LOT OF ORGANIZATIONS LIKE YOURS AND OTHERS THAT ARE COLLECTING DATA OUT THERE FOR A VARIETY OF PURPOSES AND THIS IS RAISING A NEW ISSUE FOR SOCIAL LICENSE IN SOCIAL MEDIA. SURVEY BURNOUT. IF I SIGN UP FOR A SITE, YOU KNOW, I'LL FIND OUT THAT THAT ORGANIZATION DECIDED THAT THEY'RE ACTUALLY DOING A LONGITUDINAL STUDY AND THEY WANT ANOTHER SURVEY, OR ONCE I'M INTO THE SYSTEM, THEY'RE ASKING FOR MORE SURVEYS ON ANOTHER TOPIC. I THINK WE NEED TO ADDRESS THE NEED FOR BEING VERY TRANSPARENT ABOUT WHETHER OR NOT THE SURVEY IS GOING TO HAVE FOLLOW-UP SURVEYS ALLOWING YOU TO OPT OUT FROM BEING CONTACTED FOR CERTAIN TYPES OF SURVEYS, HOW THE SURVEY GOING TO BE USED SO I CAN DECIDE WHAT'S THE BEST USE OF MY TIME CONTRIBUTING TO RESEARCH GIVEN THAT I'M DEALING WITH AN ILLNESS , WITH FAMILY, MY OWN BUCKET LIST PROJECTS, YOU KNOW, WE'RE NOT JUST A SOURCE OF DATA AND ONCE WE'RE IN THE SYSTEM, WE SHOULDN'T BE CONSIDERED A RESOURCE. >> Sally Okun: THAT'S AN EXCELLENT QUESTION. THE BURDEN ON PATIENTS TO PARTICIPATE IN SOME OF THE RESEARCH THAT WE IMPOSE UPON THEM IS SIGNIFICANT. AND THERE'S AN INTEREST -- AND THEIR INTEREST IN WANTING TO ALTRUISTIC IS HIGH AND YET THAT BURDEN ON THEM IS SOMETHING THAT'S ALSO BENEFIT/RISK ASSOCIATED WITH IT. I THINK THAT SHOULD BE SOMETHING THAT SHOULD BE PART OF OUR BENEFIT/RISK GOING FORWARD WITH ANY RESEARCH PROJECT. I THINK YOUR POINT IS VERY WELL TAKEN AND IT REALLY REINFORCES THE ABSOLUTE NEED FOR PATIENTS TO BE ENGAGED IN ALL ACROSS THE LIFE CYCLE OF A STUDY TO SAY YOU KNOW WE'RE STARTING TO OVER BURDEN PEOPLE OR GETTING FEEDBACK FROM PEOPLE. ONE OF THE THINGS WE TRY TO DO IS TO GET, WE HAVE SORT OF AN ONGOING FEEDBACK MECHANISM AND WE'RE ALWAYS ENCOURAGING PEOPLE AT THE END OF ANY SUR VAIF WHAT DID WE DO IN THIS SURVEY THAT YOU DIDN'T LIKE, IS WILL A QUESTION THAT WE DIDN'T ASK OR DID WE ASK TOO MANY AND START TO GO GATHER INFORMATION SO THAT WE'RE ACTUALLY IN REALTIME START TO GO COLLECT THAT, BUT YOU'RE ABSOLUTELY CORRECT AND I THINK IT'S UPON THE PATIENT POPULATION AS WELL AS SOCIAL MEDIA TO SAY WHOA, YOU KNOW, WE WANT TO CONTRIBUTE BUT WE HAVE TO DO IT ON TERMS THAT ARE ACTUAL GOING TO STILL ALLOW US TO HAVE A LIFE AND THEN STILL CONTRIBUTE. SO THE OTHER PIECE OF IT IS IN THE TRIAL DESIGN ENSURE THAT THEY'RE ASKING MEANINGFUL QUESTIONS. ALL OF OUR SURVEYS GO THROUGH A VETTING PROCESS WITH PATIENTS AND WE OFTENTIMES THROW QUESTIONS OUT BECAUSE WE SAY WHY ARE YOU ASKING THAT QUESTION? THAT'S NOT GOING TO BE MEANINGFUL TO ME AT THE END OF THE DAY. WHO IS THAT BEING ASKED FOR? IF IT'S BEING ASKED FOR THE PURPOSE FOR THE RESEARCHER TO HAVE A NEWSPAPER DATA POINT BUT IT'S NOT GOING TO BE HELPFUL TO THE OUTCOME OF THE STUDY, IT'S PROBABLY NOT NECESSARY. AGAIN IT'S THAT BENEFIT RISK ANALYSIS ON ALL OF THAT BUT I THINK YOU RAISE A VERY IMPORTANT POINT. >> DON DIZON FROM PROVIDENCE RG RHODE ISLAND. I HAVE TWO QUESTIONS, YOU MAY ONLY HAVE TIME FOR ONE. TELL ME MORE ABOUT THE LITHIUM STUDY. I'M INTRIGUED BY THE PATIENTS LIKE ME EXPERIENCE THAT PRECEDED AN NIH FUNDED STUDY AND I UNDERSTAND HOW THE NIH STUDY TOOK LONGER TO ENROLL AFTER THAT IS. DID YOU HAVE ANY INPUT ON WHETHER OR NOT THE STUDY SHOULD GO FORWARD AND WHAT INPUT DEUPG THE PATIENTS LIKE ME EXPERIENCE HAD ON THE PROLONGATION OF THE ENROLLMENT PERIOD? >> Sally Okun: EXCELLENT QUESTIONS EXPHING AT THE TIME WE WERE NOT SEEN AS LEGITIMATE AND CREDIBLE ENOUGH TO BE ASKED THOSE QUESTIONS FRANKLY, HOWEVER , I WILL SAY IN CLOSED DOOR CONVERSATIONS THERE MIGHT HAVE BEEN SOME OPPORTUNITY FOR OUR RESEARCHERS TO REACH OUT AND SAY LOOK WHAT WE FOUND, IS THIS GOING TO BE VALUABLE TO YOU, I THINK AGAIN AT THE TIME WE WERE TOO NOVEL TO BE SEEN AS BEING ABLE TO TRUST THE DATA THAT WE HAD PRODUCED. NOW, THE FACT THAT THE FIRST STUDY CAME TO THE SAME CONCLUSION PROBABLY SHOULD HAVE BEEN AN INDICATION THAT THE SECOND STUDY SHOULDN'T CONTINUE TO ENROLL, BUT IT DID. SO I THINK TODAY IT WOULD HAVE BEEN A DIFFERENT CONVERSATION. YOU KNOW, WE'RE TALKING TEN YEARS AGO, WE HAVE NOW DEVELOPED AGAIN MAYBE IN MANY WAYS WE'VE EARNED OUR SOCIAL LICENSE WITH THE RESEARCH COMMUNITY FOR THEM TO TRUST AND UNDERSTAND THAT WE HAVE DONE THE WORK THAT WE'VE DONE IN A VERY RIGOROUS AND SOCIALLY RESPONSIBLE AS WELL AS RESEARCH RESPONSIBLE WAY, BUT TO ANSWER YOUR QUESTION QUICKLY, IT WASN'T A LOT OF CONVERSATION ABOUT T WE PUT FORTH OUR STUFF, WE ACTUALLY THERE WAS AN ARTICLE IN THE WALL STREET JOURNAL AS WELL, BUT IT DIDN'T SEEM TO GATHER THE MOMENTUM AT THE NIH LEVEL. >> THANK YOU. >> Sally Okun: WELL, THANK YOU SO MUCH, AND I HOPE YOU HAVE A WONDERFUL DAY. [APPLAUSE] >> THANK YOU VERY MUCH, SALLY, THAT WAS REALLY A GREAT TALK. NEXT WE'RE GOING TO MOVE ON TO THE FIRST SESSION OF THE DAY, SOCIAL MEDIA TOOLS AND METRICS. I WOULD LIKE TO INTRODUCE HOLLY MASSETT, SHE'S OUR SESSION CHAIR SHE'S SENIOR BEHAVIORAL SCIENCE ANALYST FOR THE CANCER THERAPY EVALUATION PROGRAM AT NCI. >> Holly Massett: SO BEFORE WE BEGIN, I'M GOING TO TALK ABOUT THE BREAKOUT BUT ALSO GIVE A FEW SECONDS FOR THE FOLKS WHO ARE ON THE PANEL. WE WOULD LIKE YOU TO COME UP AND SIT UP HERE DURING THE PRESENTATION. THANK YOU. ALL RIGHT. GREAT. SO JUST A MINUTE ABOUT THE BREAK OUT. FOR VOLUNTEERS AND NOTE TAKERS, IF YOU COULD MEET IN THE ROOM C AT 1:00 SO WE CAN JUST RECAP REALLY BRIEFLY ABOUT YOUR RESPONSIBILITIES, THAT WOULD BE GREAT. FOR EVERYBODY ELSE, THE LIST OF THE BREAKOUT SESSIONS AGAIN ARE IN THE PACKET. IT'S GOING TO BE A FORM OF SPEED DATING, SO IT'S GOING -- WHICH WILL HOPEFULLY GIVE YOU A LOT OF CHOICES TO WORK THROUGH AND BE MORE ENGAGING. SO THERE WILL BE WHITE BOARDS WITH A MATRIX ON T EACH BREAKOUT HAS ABOUT TWO TO THREE CHALLENGES. THEY'RE PRETTY BIG SO THAT THEY COULD INCORPORATE, YOU KNOW, A LOT OF VARIETY. AND YOU'LL BE SORT OF HUDDLING AROUND IT AND HAVING A DISCUSSION TO FILL IN THE MATRIX AFTER 20 MINUTES, THERE WILL BE A BELL, YOU CAN CHOOSE TO GO TO ANOTHER BREAKOUT OR YOU CAN STAY IN THE ONE YOU'RE AT. BUT THIS WAY YOU'LL HAVE UP TO THREE OPTIONS TO GO TO BECAUSE THERE WILL BE THREE BREAKOUT SESSION TIMES AT 20 MINUTES EACH OKAY. SO OUR SESSION 5 IS ON SOCIAL MEDIA TOOLS AND METRICS, AND THE PRESENTERS, THERE'S FOUR OF US. I'LL BE STARTING, FOLLOWED BY JESSICA SCHINDLER, JOSHUA DELUNG AND ERIN FORDYCE. I'LL SHARE INFORMATION ABOUT THESE PRESENTERS IMMEDIATELY BEFORE THEY SPEAK. IN THE INTEREST OF TIME, I'LL MOVE ON. MY PRESENTATION TODAY WILL BE DISCUSSING RESEARCH THAT NC I CONDUCTED WITH NIH TO EXPLORE WAYS TO RAISE PUBLIC AWARENESS OF CLINICAL TRIALS. WE HEARD A LOT YESTERDAY ABOUT ENGAGEMENT IS, IT'S ALSO IN THE TITLE OF THE WORKSHOP, SO NO SURPRISE IS, BUT I'LL BE ADVANCING THIS CONVERSATION A LITTLE BIT AND TALKING ABOUT ENGAGEMENT AS A METRIC. SO WITH SOCIAL MEDIA WE OFTEN THINK OF METRICS THAT WE CAN COUNT, THE NUMBER OF HITS, PAGE OPENS, CLICK THROUGHS, COMPLETION RATES AND THESE ARE VERY SPORNT METRICS TO HELP KEEP TRACK. IMPACT THAT YOUR SOCIAL MEDIA OUTREACH HAS HAD, BUT SOCIAL MEDIA MESSAGES MUST FIRST ENGAGE THEIR AUDIENCES, THEY MUST BE INTERESTING, BELIEVABLE, CREDIBLE, PERSONALLY RELEVANT AND MOTIVATEING. I RECOGNIZE THAT MANY SOCIAL MEDIA MESSAGES ARE SPONTANEOUS AND GROUND UP BUT I WANT YOU TO THINK IN THE CONTEXT FOR MY PRESENTATION ABOUT THOSE THAT ARE CRAFTED AS PART OF A CAMPAIGN OR A PROGRAM. SO THERE ARE MANY TOOLS AND STRATEGIES THAT TWIST TO IDENTIFY THE STRONGEST MESSAGE TO USE WITH THEIR AUDIENCE AND I'LL TALK A LITTLE BIT ABOUT THE ONE THAT WE USED AND THESE DO REQUIRE UPFRONT COMMITMENT AND TIME AND RESOURCES BECAUSE THEY CAN'T JUST BE DONE SORT OF AS A LAST MINUTE THOUGHT. SO BEFORE DIVING INTO THE HEART OF THE PRESENTATION, I WANT TO TALK ABOUT A FEW OF THE HIGHLIGHTS FROM YESTERDAY THAING RELATE TO MY PRESENTATION MOVING FORWARD. SEWELL ZAN THAT FOX NOTED THAT WE -- SUZANNA FOX NOTED THAT WE MUST ENGAGE AND RESPECT PATIENTS AND SOCIAL MEDIA IS A TOOL ABOUT LISTENING AND PROVIDES ACCESS TO INDUSTRIAL STRENGTH INFORMATION AS WELL AS WE NEED PRECISION ENGAGEMENT, I LOVE THAT TERM, THAT CONNECTS WITH PATIENTS AND CARE GAIFERS R GIVERS. ANDREA DENECOF REMINDED US THAT AT THE END OF THE DAME CLINICAL TRIALS SHOULD BE AN INFORMED TRIES BY PATIENTS. GALUS FRIEDMAN NOTED THAT WE NEED TO SHARE SUCCESS TRIALS AND THEIR STORIES AND CHANGE HOW WE THINK ABOUT CLINICAL TRIALS. JANUARY KNELT FREEMAN-DALY I THINK WAS INTERESTING WHERE SHE SAID I WAS A SCIENTIST BUT HADN'T THOUGHT ABOUT CLINICAL TRIALS HERSELF FOR HER DIAGNOSIS CLINICAL TRIALS ALSO OFFERED HER A TREATMENT OPTION THAT OTHERWISE WOULD HAVE JUST LEFT HER WITH CHEMOTHERAPY, THEN I THINK VERY POIGNANTLY SHE NOTED ABOUT THE NOTION OF HOPE, THAT PATIENTS KNOW THAT CLINICAL TRIALS ARE NOT A GUARANTEE BUT THAT IT MIGHT JUST HELP THEM. CAN LAKSHMI GRAMA, LET'S PLAN A CAMPAIGN TOGETHER. DAVID CHARLES END ODD IF YOU ED INDICATE THE PUBLIC ON THE BENEFITS OF TRIALS THEY ARE MORE LIKELY TO CONSIDER PARTICIPATING IN ONE. SO THE FRAMEWORK THAT WE USED FOR OUR TOOLS OF ENGAGEMENT WAS SOCIAL MARKETING. SOCIAL MARKETING IF YOU'RE NOT FAMILIAR WITH IT IS AN EXCHANGE THEORY PERSPECTIVE, IT OFFERS A BENEFIT TO THE CONSUMER IS, IN OUR CASE IT WOULD BE PATIENTS AND SURVIVORS CONSIDERING CLINICAL TRIALS AND THE REAL QUESTION IS WHAT'S IN IT FOR THEM, NOT WHAT'S IN IT FOR THE SCIENTIST, NOT WHAT'S IN IT FOR NCI NCI, ANY OF THOSE FOLKS, IT'S WHAT'S IN IT FOR THE PATIENT. ALSO SOCIAL MARKETING ADDRESSES AUDIENCE'S ATTITUDES AND PLOAIVE ASIANS, SO TO UNDERSTAND THEM FIRST, TO WORK FROM THEM AND TO BE DATA DRIVEN. AND SOCIAL MARKETING IS TAILORING YOUR MESSAGES TO RELEVANT AUDIENCE SEGMENTS AND SUBGROUPS OF YOUR POPULATION THAT HAVE SIMILAR INTERESTS IS. THE OTHER MOST IMPORTANT THICK THAT I THINK SOCIAL MARKETING ALLOWS US TO DO THAT RELATES TO THIS CONFERENCE SEMI FA SIS ON LISTENING AND ENGAGING AUDIENCES IS. SO THE RESEARCH I'M TALK ABOUT FOR THE REST OF THE PRESENTATION WAS AN NC I, NIH, WE ARE PART OF NIH, HE KNOW THAT, IT WAS NCI FUNDED WORKING WITH NIH AS PART OF A CLINICAL TRIAL EFFORT. WE FIRST DID A FOCUS GROUP CONSTITUTED STUDY WITH PATIENTS, CAREGIVERS, INDIVIDUALS WHO WERE HEALTHY BUT HAD A STRONG FAMILY HISTORY OF A DISEASE AND HEALTHY PEOPLE. WE WANTED TO EXPLORE THEIR ATTITUDES TOWARD AND UNDERSTANDING OF CLINICAL TRIALS AND IDENTIFY SALIENT AND ACCEPTABLE MESSAGES AND CREATIVE CONCEPTS THAT MIGHT INCREASE THEIR AWARENESS AND INTEREST IN THE CLINICAL TRIALS. THEN WE FOLLOWED IT UP WITH A NATIONAL WEB BASED SURVEY WITH JUST PATIENTS, CAREGIVERS AND THE GENERAL POPULATION WHO ALSO HAD A FAMILY HEALTH HISTORY TO ASSESS THE IMPACT OF THESE MESSAGE CONCEPTS ON FOLKS' AT ATTITUDES AND THEIR LIKELY LIKELIHOOD TO CONSIDER A CLINICAL TRIAL IN THE FUTURE. THESE ARE BOTH THE FIRST ONE IS PUBLISHED LAST YEAR IN THE JOURNL OF HEALTH COMMUNICATION AND THE SECOND WAS AN ASCO ABSTRACT IN 2016. I APOLOGIZE FOR NOT GIVING AS MANY DETAILS AS ONE MIGHT GIVE ON A RESEARCH PROJECT BUT IF YOU NEED MORE INFORMATION, YOU CAN LOOK THEM UP IN THE SOURCES. SO LIKE ANY GOOD DATA DRIVEN PROJECT, WE STARTED WI A LITERATURE REVIEW AND WANTED TO FIND POUT WHAT ARE THE POTENTIAL BEHAVIORAL DETERMINANTS THAT MIGHT BE RELEVANT TO MOTIVATE FOR CLINICAL TRIALS. IN THE LITERATURE WHAT WE CAME UP WITH WERE INCREASING SELF- EFFICACY, MAKING IT EASIER TO PARTICIPATE, REDUCING PERCEIVED RISK, REDUCING MISPERCEPTIONS AND INCREASING TRANSPARENCY, NORMALIZING PARTICIPATION IN A CLINICAL TRIAL SO PEOPLE LIKE ME MIGHT DO THIS, PROMOTING POTENTIAL REWARDS, STATE OF THE ARTS AND CONSIDERING ALL OPTIONS, GIVING A SENSE OF CONTROL AS PATIENTS WILL NOTE THAT THEY FEEL A LOSS OF CONTROL AND DECISION DECISION-MAKING WHEN CIEG -- WHEN DIAGNOSED, THEN CONNECTING TO SELF-STANDARD AND ALTRUISTIC GOALS. WE CONDUCTED INFORMATIVE RESEARCH, 12 FOCUS GROUPS ACROSS THREE PARTS OF THE COUNTRY, WE SEGMENTED BY PAIRKTS, THOSE -- PATIENTS, THOSE WITH A FAMILY HISTORY, CAREGIVERS, HEALTHY PUBLIC AND WE TESTED IN -- TESD OUR CREATIVE MESSAGES ITERATIVE LY. IF THEY DIDN'T LIKE SOMETHING, WE HAD THE DESIGN BEHIND THE SCENES, THEY WOULD MAKE CHANGES, WE WOULD COME BACK OUT. IT WAS A VERY DYNAMIC PROCESS AND IT SAVED US A LOT OF TIME DOING AN ENTIRE GROUP AROUND SOMETHING THAT THEY HATED. SO THEN WE DID DO NINE INTERVIEWS WITH PRIMARY CARE PHYSICIANS. I'M NOT FOCUSING ON THIS TODAY. THIS WAS MAINLY TO MAKE SURE THAT THERE WERE NO DEAL BREAKERS IN WHAT WE IDENTIFIED. SO THE FOCUS GROUP FINDINGS. FIRST, NO SURPRISE TO THOSE HERE , ATTITUDES TOWARD CLINICAL TRIALS FOR THOSE BEFORE WE TALKED ABOUT THEM WERE NEGATIVE, PREDOMINANTLY NEGATIVE, THERE WERE CONCERNS OF BEING DENIED TREATMENT AND RECEIVING A PLACEBO. I WILL NOTE THAT WE DID OVER SAMPLE, WE HAD A SPECIAL GROUP INDIVIDUAL GROUPS ON CANCER BUT THIS WAS MIXED DISEASES OTHERWISE BECAUSE IT WAS PART OF NIH. THRCH THE FEAR OF THE UNKNOWN -- THERE WAS A FEAR OF THE UNKNOWN, THE SIDE EFFECTS MIGHT MAKE YOU WORSE BY PARTICIPATING IN A CLINICAL TRIAL AND THEIR REASONS FOR PARTICIPATE VARIED. IT WAS PREDOMINANTLY HELPING THEMSELVES TO HOPEFULLY GET BETTER, SOME SAW IT AS A LAST HOPE FOR THEIR TREATMENT OR ACT OF DESPERATION AND SOME WHO WERE COMPLETELY NAIVE ON CLINICAL TRIALS THOUGHT IT MIGHT BE FOR POTENTIAL FINANCIAL INCENTIVES. SO WE TESTED INITIALLY OUT OF THE GATE 7 CONCEPTS, CREATE TIVMENT I'M NOT EXPECTING YOU -- IF YOU GO TO THE PAPER, THERE WILL BE MORE DETAIL, BUT OUT OF THE GATE, TWO OF THEM, THE ONES IN THE UPPER LEFT WITH THE CHILDREN WERE ARULED OUT, PEOPLE DID NOT WANT TO SEE CHILDREN HAVING TO DO WITH CLINICAL TRIALS EVEN IF THEY WERE HEALTHY , SO THERE'S NO WAY WE COULD HAVE MADE THESE TWO WORK, ON STHEEZ WERE RULED OUT -- THESE WERE RULED OUT. EACH OF THESE IN SOME CAPACITY HAS ONE TO TWO OF THE BEHAVIORAL DETERMINANTS EMBEDDED INTO THE MESSAGING, SO IT'S NOT EXPECTING US REALLY TO SEE IT FROM THERE. THE OTHER TWO WITH THE X'S WITH THE BAG AND THE PILL BOX WERE RULED OUT AS IMPERSONAL AND THEY JUST THEN THE ONE BELOW I'LL TALK ABOUT IN A MINUTE. THE NEXT ROUND WE WENT THROUGH, WE REITERATED AND AGAIN SOME WERE RULED OUT AND THEN YOU WANT MATTLY WE HAD THE FOUR THAT WERE -- ULTIMA TELY WE HAD THE FOUR ON THE RIGHT THAT WE MOVED FORWARD WITH WITH THE TESTING. STICK P ON THE CONCEPTS FOR A MINUTE, IT WAS MOST IMPORTANT TO THE FOLKS IN OUR GROUPS TO NORMALIZE CLINICAL TRIALS, AND BY THIS, IT MEANS SHOWING REAL PEOPLE IN REAL SITUATIONS AS SOMETHING PEOPLE LIKE ME DO, INCLUDING PERSONAL STORIES AND EMBEDDING A HUMAN ELEMENT INTO IT, AS WELL AS HAVING A DIVERSE TIFF PICTURES WHICH INCREASED THEIR ABILITY TO CONNECT TO THE MESSAGING. SO ON THE LEFT IF YOU CAN SEE, IT WAS INCLUSIVE OF MANY DISEASES AND TIECHES PEOPLE. THE FEELING BETTER BROUGHT TO YOU BY CLINICAL TRIALS WAS THE TAG LINE. AND THE MAIN PURPOSE WAS TO SHOW THAT EACH OF THOSE BLUE WORDS BENEATH THE PERSON IS SOME SORT OF TREATMENT THAT HAS BEEN TESTED VIA CLINICAL TRIAL AND IS NOW A STANDARD OF CARE. AND THAT REALLY RESONATED WITH FOLKS. ALSO THE INTRINSIC REWARDS RESONATED STRONGLY AS WELL, SO POSITIVE MESSAGES, WE ARE WHERE WE ARE BECAUSE OF CLINICAL TRIALS. THIS WAS ACTUALLY VERY HELPFUL IN REDUCING THE GUINEA PIG IMAGE , WHICH, YOU KNOW, CAME UP OFTEN EARLY IN THE GROUPS. THEY LIKE TO KNOW THAT THEY ARE RECEIVING STATE OF THE ART TREATMENTS. THEY DIDN'T WANT CUTTING EDGE. THEY HAVE THOUGHT THAT WAS TOO DRASTIC. AND THEN GOING TO JANET'S POINT, HOPE WAS ABSOLUTELY NECESSARY. IT COULD NOT BE EXPLICITLY STATED, HOWEVER, BECAUSE THEY DIDN'T BELIEVE THAT AND THEY SAID NO, NO, YOU'RE OVER PROMISING OR YOU'RE SUGAR-COATING IT, SO THEY JUST WANTED TO KNOW THAT IT WASN'T JUST GIVING UP THEIR BODIES FOR RESERCH. ALTRUISM WAS A SIDE BENEFIT BUT NOT A MAIN DRAW. WE TRIED IN MANY WAYS TO SEE HOW BOTH ALTRUISM AND THE CONCEPT OF HERO BECAUSE THAT IS OUT THERE MESSAGING BY OTHER GROUPS AROUND CLINICAL TRIALS TO SEE IF THIS COULD WORK. OVERWHELMINGLY PEOPLE BELIEVED THAT PEOPLE JOINED TRIALS TO FIRST HELP THEMSELVES. THE IDEA OF HERE WISM WAS AWKWARD -- HEROISM WAS AWKWARD AND DISES STRACTDING AND CRZ PEOPLE SAID SOMEONE WHO PULLS SOMEONE FROM A BURNING ARE ARE LZ BUILDING IS -- BUILDING IS A HERO. LZ THIS JUST KIND OF FLOPPED ACROSS THE BOARD. THE CLINICAL TRIALS AS OPTIONS WORKED WELL. THEY THOUGHT IT OFFERED THEM AN ACTION STEP, IT WAS IMPORTANT BECAUSE HAVING A DISEASE CAN MAKE THEM FEEL OUT OF CONTROL. AND THEY LIKED TO MAKE SURE IT WAS DIRECT, TO THE POINT AND CLEAR ACTION STEPS, BE YOUR OWN ADVOCATE, ASK YOUR DOCTOR, CONSIDER CLINICAL TRIALS. ALSO THEY NEEDED TO KNOW HA THE SOURCE WAS CRED -- THAT THE SOURCE WAS CREDIBLE AND TRUSTED AND UPFRONT, THEY WANTED TO KNOW WHO WAS SPONSORING THIS. SO THE NEXT STEP WE DID WAS TELS ED THESE USING A NATIONAL WEB BASED SURVEY. WE HAD THREE ADULT SEGMENTS THAT WERE RECRUITED THROUGH THE RESEARCH NOW PANEL SURVEY FOR A SAMPLE POPULATION OF 541. THE GENERAL PUBLIC WE PUT A TWIST ON IT, THEY HAD TO HAVE A FAMILY HEALTH HISTORY. THEY WERE CONCERNED ABOUT. THOSE WHO WERE COMPLETELY HEALTHY WITH NOTHING EVER GOING ON IN THEIR LIVES WERE JUST NOT PAYING ATTENTION AND THEY JUST DIDN'T CARE. THEY CAME RIGHT OUT AND TOLD US IN THE FOCUS GROUPS, PLEASE DON'T, THIS ISN'T SOMETHING WE WANT I WANT TO THINK ABOUT. WE ALSO LOOKED AT PERSONS WITH LONG-TERM SERIOUS CHRONIC DISEASE, WE DID A SAMPLE FOR CANCER AND CAREGIVERS FOR SOMEONE WITH A SERIOUS DISEASE, WHICH WERE A LITTLE HARDER TO FIND, SO OUR N WAS SMALLER. THEY ANSWERED ELEVEN QUESTIONS, VIEWED THREE OF THE FOUR ADS WHICH WERE RANDOMLY ASSIGNED, THEY ANSWERED EIGHT QUESTIONS ABOUT EACH AD AND THEN FIVE FOLLOW-UP QUESTIONS. SO WHAT I'M GOING TO SHOW IS JUST TWO SLIDES ON THIS. THESE ARE PRESENTED ELSEWHERE, BUT THIS WILL GIVE YOU THE GIST OF WHAT OUR FINDINGS WERE. WHEN WE ASKED PEOPLE BEFORE AND AFTER HOW LIKELY ARE YOU IN THE FUTURE TO LOOK INTO PARTICIPATING IN CLINICAL TRIALS RESEARCH, BEFORE THE ADS 36 PERCENT SAID SOMEWHAT LIKELY OR VERY LIKELY. AFTER SEEING THE ADS, NO MATTER WHAT COMBINATION, NO MATTER WHAT ORDER, 64 PERCENT, IT JUMPED TO 64 PERCENT WERE SOMEWHAT LIKELY OR VERY LIKELY, WHICH WAS SIGNIFICANT WITH THE P VALUE OF 001 MUCH. THE MEAN CHANGE ALSO WENT FROM 316 TO 70 ALSO SIGNIFICANT. THE SHIFT IS REALLY TO THE RIGHT AS YOU CAN SEE INTHERMS OF REALLY PAYING ATTENTION AND POTENTIALLY BEING INTERESTED IN A CLINICAL TRIAL. WE LOOKED AT IT BY GROUPS, CAREGIVERS AND GENERAL POPULATION WERE HIGHER THAN PATIENTS, THOUGH ALL CHANGE FOR THE GROUPS WAS SIGNIFICANT. I'M SURE FROM WHAT WE READ IN THE OPEN ENDED QUESTIONS THAT THE PATIENTS, THEY WERE A LITTLE MORE SKEPTICAL BECAUSE THEY WERE THE ONES BEING ASKED TO PARTICIPATE, IT WAS THEIR HEALTH THAT WOULD MATTER. SO THE KEY TAKE AWAYS FROM OUR RESEARCH ON THIS WAS THAT ALL GROUPS WERE SIGNIFICANTLY MORE POSITIVE TOWARD CONSIDERING PARTICIPATION IN A CLINICAL TRIAL AFTER VIEWING THE SET OF AD CONCEPTS. IT WAS IMPORTANT TO NORMALIZE TRIALS IN THE WAY OF TRIALS PROVIDE AN OPTION FOR PEOPLE LIKE ME TO CONSIDER AS A TREATMENT CHOICE, THAT THE CURRENT STANDARD OF CARE WAS TESTED IN CLINICAL TRIALS AT SOME POINT AND THAT TRIALS ARE THE STATE OF THE ART THINKING AND WELL MONITORED. IT WAS ALSO IMPORTANT TO OFFER ACTIONABLE STEPS TO TAKE AROUND THEIR DIAGNOSIS AND PRESENT IN CLEAR, CONCISE MANNER AND FINALLY THAT HOPE IS ESSENTIAL BUT IT MUST BE REALISTIC, AND THIS ONE PERSON PUT IT, IF YOU'RE GOING TO ASK ME TO PARTICIPATE IN A CLINICAL TRIAL, YOU'RE ASKING ME TO GET TREATMENT. GETTING TREATMENT MEANS THERE'S A CHANCE THAT THIS MIGHT WORK. IF IT'S NOT GOING TO WORK AT ALL , I'LL JUST GO INTO HOSPICE. SO I THOUGHT IT WAS A REALLY IMPORTANT POINT FOR THEM TO SAY LIKE THERE IS SOME HOPE TO THEM AND THERE SHOULD BE. SO ALTRUISM IS A SECONDARY MOTIVATOR. WITH RESPECT TO MESSAGEING AND SOCIAL MEDIA, REGARDLESS OF THE MEDIUM, OUR OUTREACH SHOULD BE ENGAGING AND CONNECT INDIVIDUALS IN A PERSONAL MANNER, OUR OUT REACH SHOULD BE DATA DRIVEN, WELL TEST #D WITH THE INTENDED AUDIENCE AND WE SHOULD PROVIDE CLEAR AND ACCEPTABLE MESSAGES THAT HAVE THE POTENTIAL TO AFFECT POSITIVE CHANGE AND INFORMED CHOICE. THANK YOU VERY MUCH. [APPLAUSE] I'M NOT DONE. SORRY. JESSICA SHINLD LAR WILL BE COMING UP -- SCHINDELAR WILL BE COMING UP NEXT, SHE'S A SOCIAL MEDIA LEAD IN THE OFFICE OF THE ASSOCIATE DIRECTOR FOR COMMUNICATION AT THE CENTERS FOR DISEASE CONTROL AND PREVENTION. SHE PROVIDES LEADERSHIP AND OVER SIGHT TO THE AGENCY'S SOCIAL MEDIA EFFORTS FOR THE PAST NINE YEARS, INCLUDING THE EBOLA AND ZIKA EMERGENCY RESPONSES. TODAY SHE'S GOING TO BE PROVIDING FOR US AN OVERVIEW OF SOCIAL MEDIA STRATEGY AS WELL AS KEY CONSIDERATIONS FOR USING VARIOUS SOCIAL MEDIA TOOLS AND BEST PRACTICES FOR CREATING ENGAGING SOCIAL CONTENT. THANK YOU JESSICA. I'M THE SOCIAL MEDIA LEAD FOR THE CENTERS FOR DISEASE CONTROL DOWN IN ATLANTA AND OVER THE LAST DAY I'VE REALLY BEEN INSPIRED BY SOME OF THE STORIES THAT WE'VE HEARD AND WE'VE TALKED ABOUT SOME OF THE PROMISIES AND POTENTIAL CHALLENGES FOR USING SOCIAL MEDIA FOR CLINICAL TRIALS, SO I WANT TO BRING IT BACK KIND OF TO THE BASICS THIS MORNING A LITTLE BIT. SO IF YOU HAVE BEEN INSPIRED OVER THE PAST DAY TO GET YOUR ORGANIZATION ON SOCIAL MEDIA AND TO JUMP IN AND DO MORE, YOU KNOW , WHERE DO YOU START AND WHAT SHOULD YOU BE FOCUSING ON? SO AS A HEALTH COMMUNICATOR, YOU KNOW, MY PRIORITY IS MAKING SURE THAT WE'RE GETTING THE RIGHT MESS STOOGE THE RIGHT AUDIENCE AT THE RIGHT -- MESSAGE TO THE RIGHT AUDIENCE AT THE RIGHT TIME AND SOCIAL MEDIA HAS BEEN A CRITICAL TOOL FOR US TO BE ABLE TO DELIVER HEALTH INFORMATION TO PEOPLE OF THE I THINK WE'VE HEARD OVER THE PAST DAY ABOUT THE IMPORTANCE OF SOCIAL MEDIA FROM A COMMUNICATIONS PERSPECTIVE. PEOPLE ARE GETTING DIGITAL CONTENT IN THE DIGITAL SPACE THROUGH SOCIAL MEDIA PLATFORMS NOW, SO WE REALLY HAVE AN OBLIGATION AND AN OPPORTUNITY TO BE COMMUNICATING WITH PEOPLE IN THAT SPACE. IT HELPS US AND IT ACTUALLY FORCES US TO TRANSLATE A LOT OF OUR RESEARCH AND POLICY INTO ACTIONABLE PLAIN LANGUAGE THAT PEOPLE CAN DO SOMETHING WITH. WE'RE ABLE TO DIRECTLY ENGAGE WITH THE AUDIENCES LIKE WE HAVE NEVER BEEN ABLE TO BEFORE IN NEW PLACES THAT WE'VE NEVER BEEN BEFORE AND TALKING TO DIFFERENT AND NEW PEOPLE THAT WE'VE NEVER HAD THE OPPORTUNITY, AND I THINK WE'VE HEARD THAT LISTENING IS VERY IMPORTANT AND SOCIAL MEDIA AFFORDS US THIS OPPORTUNITY TO REALLY LISTEN AND RESPOND TO WHAT PEOPLE ARE SAYING IN REALTIME. ON THE CDC SIDE OF THINGS IT OBVIOUSLY HELPS US TO SUPPORT OUR MISSION OF SAVING LIVES AND PROTECT LGING PEOPLE AND WE REALLY DO FEEL THAT LITTLE A VERY IMPORTANT TOOL FOR US TO COMMUNICATE WITH. SO WE SEE KIND OF FOUR KEYS TO SUCCESSFUL USE OF SOCIAL MEDIA, AND I'M GOING TO TALK ABOUT THE FIRST THREE AND THEN JOSH IS GOING TO TALK A BIT MORE ABOUT EVALUATION AND METRICS DURING HIS PRESENTATION NEXT. SO THAT IS STRATEGY, GOOD CONTENT AND ENGAGEMENT. WE'VE HEARD A LOT ABOUT ENGAGEMENT OVER THE LAST DAY AS WELL AND I THINK I'LL TALK A LITTLE BIT ABOUT THAT MORE. SO WHEN WE'RE TALKING ABOUT SOCIAL MEDIA STRATEGY, YOU KNOW, WE REALLY NEED TO DO OUR HOMEWORK BEFORE WE JUST DIVE INTO A SOCIAL MEDIA PLATFORM OR CAMPAIGN AND THINK ABOUT HOW WE CAN STRATEGICALLY USE SOCIAL MEDIA AS PART OF OUR OVERALL COMMUNICATIONS. SO DOING OUR HOMEWORK, THINKING ABOUT WHO ARE YOU TRYING TO REACH? WHO IS YOUR AUDIENCE? WHAT ARE THEIR INFORMATION NEEDS AND WHERE ARE THEY ALREADY SPENDING TIME ONLINE? WE NEED TO CLEARLY IDENTIFY WHAT IT IS THAT WE ARE TRYING TO ACHIEVE. WHAT ARE THE GOALS AND OBJECTIVES OF OUR COMMUNICATION EFFORTS? AND AT THAT POINT, THAT'S WHEN YOU NEED TO START THINKING ABOUT WHERE DOES SOCIAL MEDIA POTENTIALLY BEST SUPPORT YOUR OVERALL STRATEGY? AND IT'S POSSIBLE THAT, YOU KNOW , CDC HAS A VERY VAST LANDSCAPE OF SOCIAL MEDIA PLALT FORMS THAT WE USE TO SUPPORT OUR COMMUNICATIONS EFFORTS, BUT IT'S POSSIBLE THAT NOT EVERY CHANNEL IS GOING TO SUPPORT EVERY OBJECTIVE THAT YOU ARE TRYING TO ACHIEVE. SO REALLY THINKING ABOUT WHERE IT'S GOING TO BEST COMPLEMENT WHAT YOU'RE TRYING TO DO FROM A COMMUNICATIONS PERSPECTIVE. YOU ALSO REALLY NEED TO CONSIDER WHAT RESOURCES THAT YOU HAVE TO HAD IMPLEMENT A SOCIAL MEDIA CAMPAIGN OR START A PRESENCE IN SOCIAL MEDIA CHANNELS. SOCIAL MEDIA, YOU NEED TO HAVE, YOU KNOW, I'M FORTUNATE TO HAVE A TEAM OF 7 PEOPLE -- OR I'M SORRY, 8 PEOPLE ON MY TEAM THAT ARE DEDICATED TO DOING SOCIAL MEDIA, BUT I KNOW THAT IN A LOT OF ORGANIZATIONS IT'S SOMEONE'S OTHER DUTIES AS ASSIGNED TO BE THE PERSON THAT'S ALSO FEEDING SOME OF THE SOCIAL MEDIA PRESENCE. ALSO THINKING ABOUT RESOURCES IN TERMS OF TIME THAT YOU HAVE. IF YOU HAVE ANY FUNDING TO SUPPORT YOUR SOCIAL MEDIA EFFORTS. VERY EARLY ON WHEN I FIRST STARTED WORKING IN SOCIAL MEDIA, I HEARD SOMEONE AT A CONFERENCE SAY THAT SOCIAL MEDIA IS FREE, LIKE GETTING A FREE PUPPY IS FREE. YOU REALLY HAVE TO -- [LAUGHTER] -- FEED AND MAINTAIN YOUR PUPPY. YOUR SOCIAL MEDIA, YOU KNOW, YOU CAN'T JUST PUT IT UP THERE AND THEN EXPECT PEOPLE TO COME TO T YOU REALLY HAVE TO ENGAGE WITH YOUR COMMUNITY AND MAINTAIN WHAT'S HAPPENING IN THOSE CHANNELS IN ORDER FOR IT TO BE AN EFFECTIVE USE OF SOCIAL MEDIA FOR YOU. THEN DEFINING AT THE BEGINNING -- I SKIPPED A STEP. ONCE YOU HAVE DONE ALL OF YOUR HOMEWORK AND FIGURED OUT WHO YOUR AUDIENCE IS AND WHERE THEY'RE SPENDING TIME ON LINE AND HOW YOU CAN SUPPORT IT, THEN THAT'S WHERE YOU THINK ABOUT WHAT SPECIFIC SOCIAL MEDIA TACTICS THAT YOU ARE GOING TO USE, SO THAT'S WHERE YOU DECIDE I NEED TO BE ON TWITTER TO BE HAVING CONVERSATIONS HERE VERSUS MAYBE MY AUDIENCE IS NOT ON FACEBOOK OR MY AUDIENCE IS REALLY SPENDING A LOT OF TIME ON LINKEDIN AND THAT'S WHERE WE NEED TO BE, SO THAT'S WHERE YOU'RE GOING TO LOOK AT WHAT SPECIFIC SOCIAL MEDIA TACTICS TO USE, AND THEN FIGURING OUT AT THE BEGINNING WHAT DOES SUCCESS LOOK LIKE FOR YOU AND BASED ON WHAT YOU'RE PLANNING TO DO AND WHAT YOUR OBJECTIVES ARE HOW YOU WILL MEASURE IT. SOCIAL MEDIA IS NOT A MAGIC BULLET, IT IS NOT GOING ON SOLVE ALL OF THE WORLD'S PROBLEMS, BUT IT IS VERY EFFECTIVE IN HELPING US REACH SOME KEY GOALS. SO SHARING INFORMATION ACROSS THE SOCIAL MEDIA SPACE HAS BEEN A VERY EFFECTIVE WAY FOR US TO RAISE AWARENESS AROUND CERTAIN HEALTH ISSUES. HAVING CONVERSATIONS IN SOCIAL MEDIA AND EDUCATING PEOPLE IS REALLY KEY TO DRIVING ENGAGEMENT INFLUENCING CONVERSATIONS. PEOPLE ARE HAVING CONVERSATIONS AROUND OUR HEALTH TOPICS ONLINE EVERY SINGLE DAY AND IS OUR VOICE THERE AND HOW MUCH DID IT CHANGE FROM WHEN WE WEREN'T THERE TO WHEN WE WERE NOW? ADVOCACY, GETTING OTHER PEOPLE ON BOARD WITH YOUR MESSAGE TO HELP THEM, DPAISH I'M SORRY, FOR THEM TO HELP DELIVER THE MESSAGE , THEN DRIVING PEOPLE TOWARD ACTION, WHETHER THAT IS JUST DRIVING PEOPLE TO A WEBSITE OR DRIVING PEOPLE TO CALL A RECRUITMENT LINE OR ACCIDENT YOU KNOW -- LINE OR YOU KNOW FROM THE HEALTH PERSPECTIVE AT CDC WHAT WE'RE TRYING TO DO, REALLY TRYING TO DRIVE THEM TO CHANGE HEALTH BEHAVIORS, I THINK WE'RE TRYING TO DRIVE THROUGH TR HEALTH GOALS THROUGH SOCIAL MEDIA. I WANT TO TEACH BRIEFLY ON AWFUL THE DIFFERENT TOOLS. LY WE HEARD YESTERDAY AND THIS MORNING TION SOCIAL MEDIA TOOLS ARE NOT ALL THE SAME, THEY HAVE DWIRCHT UNIQUE CULTURES, DIFFERENT THINGS WORK BETTER ON SOME CHANNELS THAN THEY DO ON OTHERS. OBVIOUSLY FACEBOOK IS BOHEMITH, 2.2 BILLION PEOPLE ACTIVELY ENGAGE ON THE PLATFORM EVERY DAY SO IT'S REALLY WELL SUITED FOR THIS KIND OF BROAD REACH AND ENGAGEMENT AND SHARING INFORMATION, RAZORING AWARENESS. REACH ON THE PLATFORM IS REALLY EARNED THROUGH ENGAGEMENT, SO MORE PEOPLE WILL SEE YOUR CONTENT ON FACEBOOK IF OTHER PEOPLE ARE LIKING IT AND COMMENT ING ON IT AND SHARING IT. SO THAT'S KIND OF WHAT DRIVES THE FACEBOOK ALGORITHM IS OTHER PEOPLE ENGAGING WITH THEIR CONTENT. IMAGES AND VIDEO IS VERY WELL SUITED, THAT'S THE MOST SHARED TYPE OF CONTENT ACROSS THE PLATFORM AS A WHOLE. THEN WE HEARD YESTERDAY ABOUT SOME OF THE NC I USE OF FACEBOOK LIVE. THAT HAS BECOME A REALLY ENGAGING PLATFORM FOR US TO REALLY KIND OF GO BEHIND THE SCENES OF SOME OF THE THINGS HAPPENING AT CDC AND BEING ABLE TO REALLY DEEPLY ENGAGE WITH OUR AUDIENCE AND ANSWERING PEOPLE'S QUESTIONS IN REALTIME THROUGH FACEBOOK LIVE TO HAVE THAT REALLY RICH AUDIENCE ENGAGEMENT. TWITTER, WE'VE HEARD ABOUT TWITTER AS WELL OVER THE PAST DAY. A FEW LESS ACTIVE USERS ON TWITTER THAN ON FACEBOOK, BUT IT IS VERY MUCH DRIVEN BY PEOPLE GO THERE TO GET THEIR NEWS, FOR ENTERTAINMENT, TO HAVE CONVERSATIONS DRIVEN AROUND TOPICS AND THINGS, SO IT'S REALLY WELL SUITED FOR SHARING INFORMATION. WE HAVE USE IT A LOT FOR PROVIDING THESE KIND OF QUICK INFORMATION OLSZ OUTBREAKS AND QUICK HEALTH PREVENTION TIPS. WE ALWAYS WANT TO MAKE SURE AS WITH FACEBOOK THAT GO WE'RE INCLUDING SOME TYPE OF MEDIA WITH OUR TWEETS. TWEETS WITH IMAGES, VIDEOS AND ANIMATED GIF'S PERFORM BETTER THAN ANYTHING WITH A TEXT ALONE. YOU CAN ALSO SUPPLEMENT SOME OF THE TWEETS THAT YOU'RE DOING THROUGH CODING INTO YOUR WEBSITE TO BUILD OUT TWITTER CARDS AND THINGS, SO THAT'S WHERE JUST THE TWITTER WILL PULL AN IMAGE OFF OF YOUR WEBSITE, AND THEN WE HAVE BEEN EXPERIMENTING WITH SOME JUST KEEPING UP WITH SOME OF THE DIFFERENT FEATURES OF THE PLATFORM, SO THREADING TWEETS, WE DON'T HAVE TO STICK WITH OUR 200 CHARACTERS NOW, WE CAN SEND OUT A STRING OF THREEM OR FOUR TWEETS ALL TELLING A STORY AROUND SOMETHING THAT'S HAPPENING AND WE'VE BEEN DOING PULSE A LOT AS WELL, WE FOUND THAT'S A GREAT WAY FOR US TO GET SOME ENGAGEMENT AROUND RAZOR DAIRVE RAISING AWARENESS IN HE HAD EDUCATION. INSTAGRAM HAS BEEN GROWING TREMENDOUSLY IN THE TIME THAT I HAVE BEEN WORKING IN SOCIAL MEDIA, OVER 800 MILLION MONTHLY ACTIVE USERS ON THE PLATFORM NOW IT'S ALL ABOUT THE VISUAL. SO THAT OBVIOUSLY IS VERY WELL SUITED FOR ENGAGING AND BUILDING AWARENESS AROUND DIFFERENT TOPICS AS WELL AS GETTING OTHER PEOPLE TO ADVOCATE ON YOUR BEHALF THROUGH THE PLATFORM. VIDEOS WORK REALLY WELL ON THE PLATFORM BUT WE DO HAVE TO KEEP THEM VERY SHORT. HASH TAGS ARE A GREAT WAY TO DISCOVER NEWTON KNOW CONTENT AND THAT IS. ONE OF THE THINGS VERY DIFFERENT FROM THIS PLATFORM OF OTHER PLATFORMS IS THAT YOU CAN'T REALLY CLICK ON ANYTHING WITHIN THE INSTAGRAM, SO IT'S NOT A GREAT WAY TO DRIVE TRAFFIC BACK TO YOUR WEBSITE. WE HAVE BEEN DOING A TREMENDOUS AMOUNT OF WORK USING INSTAGRAM STORIES OVER THE PAST, SINCE THE BEGINNING OF THIS YEAR, TO REALLY TELL STORIES AND THEY'RE A GREAT WAY FOR US TO HIGHLIGHT A TOPIC OVER A SHORT PERIOD OF TIME, THE STORIES DISAPPEAR AFTER 24 HOURS, BUT THEY'RE A REALLY GREAT WAY FOR US TO HIGHLIGHT AND TELL STORIES OF SOME OF THE PEOPLE BEHIND SOME OF THE HEALTH TOPICS THAT WERE AFFECTED AS WELL AS SOME OF THE SAFF THAT WORK AT CDC AND SOME OF THE REALLY COOL THINGS WE GET TO DO. FINALLY THE LAST CHANNEL I'LL TALK ABOUT IS LINKEDIN, WHICH WE HAVE FOUND REALLY GREAT ENGAGEMENT FROM A PROFESSIONAL STANDPOINT ON THIS PLATFORM. PEOPLE ARE OBVIOUSLY HERE TRYING TO PROFESSIONALLY NETWORK AND LOOK FOR JOBS AND THINGS LIKE THAT, SO THAT'S WHY WE HAVE REALLY ADAPTED OUR STRATEGY ON LINKEDIN TO BE MUCH MORE GEARED TOWARD THE PROFESSIONAL AUDIENCE AND WHY PEOPLE ARE ON LINK I KNOW, PROVIDING RESOURCES LIKE TRAINING, RECRUITMENT, PROFESSIONAL DEVELOPMENT OPPORTUNITIES ARE ALWAYS REALLY ENGAGELY ON OUR LINKEDIN PLATFORM. SO I BRIEFLY DIVED INTO A FEW OF THE DIFFERENT CHANNELS THAT WE WORK IN AND THAT ARE AVAILABLE FOR US TO USE AS SOCIAL MEDIA, AND EACH PLATFORM KIND OF HAS ITS OWN DIFFERENT NEEDS IN TERMS OF CONTENT DEVELOPMENT, BUT OVER THE LAST FEW YEARS WE'VE REALLY CULLED DOWN TO FOUR KEY RULES FOR HOW WE DEVELOP EFFECTIVE CONTENT, AND I WANTED TO SHARE THEM WITH YOU BECAUSE I THINK THAT THIS IS A VERY GOOD WAY FOR US TO GUIDE HOW WE'RE THINKING ABOUT OUR SOCIAL MEDIA CONTENT DEVELOPMENT. THE FIRST AND I THINK MOST IMPORTANT RULE FOR US TO REMEMBER AS ORKSZ IS THAT -- AS ORGANIZATIONS IS THAT WE REALLY HAVE TO BE CONSIDERING HOW PEOPLE ARE VIEWING OUR INFORMATION ON A MOBILE PLATFORM MOST SOCIAL MEDIA USERS ARE LOOKING AT SOCIAL MEDIA ON A MOBILE DEVICE, SO WE REALLY HAVE TO THINK ABOUT HOW THE INFORMATION THAT WE'RE SHARING IS OPTIMIZED FOR THAT MOBILE EXPERIENCE. 94 PERCENT OF THE USERS ON OUR C DC FACEBOOK PAGE ARE ACCESSING THE PAGE THROUGH A MOBILE PLATFORM SO WE REALLY, REALLY HAVE TO BE VERY COGNIZANT OF HOW WILL WE'RE DELIVERING INFORMATION. I RECENTLY READ AN ARTICLE THAT QUOTED THAT IF YOU'RE LOOKING AT SOCIAL MEDIA ON A DESKTOP, YOU ARE PROBABLY WORKING IN SOCIAL MEDIA. SO I THINK THAT REALLY RINGS TRUE. YOU KNOW, I HAVE STARTED REVIEW ING A LOT OF OUR CONTENT ON MY PHONE JUST TO MAKE SURE, YOU KNOW, I CAN READ THE TEXT THAT IS INCLUDED IN A GRAPHIC OR I CAN READ THE VIDEO, THE TEXT THAT'S IN A VIDEO THAT WE'RE PRODUCING. SO WE REALLY HAVE TO BE VERY CONSCIOUS ABOUT THIS MOBILE FIRST IDEA OF HOW PEOPLE ARE VIEWING CONTENT ON A MOBILE DEVICE. WE HAVE ONE SECOND TO CAPTURE PEOPLE'S ATTENTION. SOCIAL MEDIA FLIES AT THE SPEED OF LIGHT, AND WE ARE LITERALLY COMPETING WITH EVERYTHING ELSE THAT IS HAPPENING IN THE SOCIAL MEDIA SPACE FOR PEOPLE'S ATTENTION, SO WE HAVE TO FIGURE OUT A WAY TO MAKE OUR CONTENT AS HEALTH COMUN KALE TORS AS -- COMMUNICATORS AS INTERESTING AND AS SEXY AS THE BIG GRAND HAVE, OF THE COCA-COLAS OF THE WORLD AND THE PEOPLE BECAUSE WE'RE COMPETING FOR SPACE IN SOCIAL MEDIA WITH ALL OF THESE BRANDS THAT HAVE WAY MORE RESOURCES AND WAY MORE PEOPLE BEHIND THE STUFF THAT THEY'RE DOING. THE THIRD RULE IS THAT WE REALLY NEED TO HUMANIZE WHAT WE'RE DOING ON SOCIAL MEDIA AND ALSO USE LANGUAGE THAT OUR AUDIENCE USES. I THINK AS A GOVERNMENT AGENCY, WE ARE CERTAINLY GUILTY OF USING A LOT OF ACRONYMS AND JARGON AND PEOPLE OUTSIDE OF CDC AND SOMETIMES EVEN PEOPLE WITHIN CDC AND WITHIN YOUR ORGANIZATION MAY NOT KNOW WHAT THOSE THINGS MEAN, SO THIS IS WHERE SOCIAL LISTENING IS REALLY IMPORTANT IS TO FIGURE OUT HOW PEOPLE ARE TALKING ABOUT THE THINGS AYOU ARE TRYING TO TALK ABOUT AND USE THE LANGUAGE IT THEY USE. THE FOURTH RULE, I THINK WE'RE UNIQUELY POSITIONED IN THE HEALTH SPACE TO REALLY PROVIDE VALUE TO PEOPLE AND BE OF SERVICE TO THEM. DO SOMETHING THAT MAKES THEIR LIFE A LITTLE BIT EASIER BECAUSE WE'RE ULTIMATELY TRYING TO EDUCATE AND EMPOWER AND INSPIRE OUR AUDIENCES. AND THEN JUST A FUEL MORE TIPS -- FEW MORE TIPS FOR SUCCESS FOR SOCIAL MEDIA. I'M NOT GOING TO GO THROUGH ALL OF THESE. FEEL FREE TO TAKE PHOTOS. ONE THING THAT I WANTED TO MENTION WAS ITEM NUMBER 5, I THINK A LOT OF TIMES IN SOCIAL MEDIA WE'RE ASKING PEOPLE TO WATCH THIS VIDEO AND THEN GO TO THIS WEBSITE AND THEN DO THIS. YOU HAVE TO REALLY ASK PEOPLE ONE THING TO DO ON A SOCIAL MEDIA POST. IF THAT'S DRIVING PEOPLE TO YOUR WEBSITE TO GET MORE INFORMATION OR TO CALL A QUIT LINE OR TO GO TALK TO THEIR DOCTOR ABOUT A CLINICAL TRIAL, WE NEED TO REALLY CULL IT DOWN INTO ONE PIECE OF INFORMATION. THEN I WILL LEAVE YOU WITH I THINK SOCIAL MEDIA PROVIDES US WITH A REALLY UNIQUE OPPORTUNITY TO TRY THINGS, SO LEARNING FROM WHAT'S WORKED REALLY WELL AND DOING MORE OF THAT AND WE'VE ALSO DONE SOME THINGS THAT HAVE NOT WORKED SO WELL BUT WE'VE BEEN ABLE TO REALLY FAIL FAST AND FIGURE OUT WHY THINGS DIDN'T WORK OUT THE WAY THAT WE THOUGHT THEY WERE GOING TO WORK AND REITERATE. SO REALLY LEARNING FROM OUR SUCCESSES AND OUR FAILURES IS WHAT HAS REALLY SET US UP FOR SUCCESS IN SOCIAL MEDIA. SO WITH THAT, I AM GOING TO TURN IT BACK OVER AND THANK YOU. [APPLAUSE] >> THANK YOU SO MUCH. UP NEXT IS JOSH DELUNG, HE IS A SENIOR MANAGER AT ICF, ICF IS RANKED BY PR WEEK AS THE LARGEST AGENCY SERVING THE USES PUBLIC SECRETARY TOMPLET HE SERVES AS I CF'S STRATEGY AND QUALITY LEAD AND LEADS ITS SOCIAL MEDIA PRACTICE. HIS CAREER HAS FOCUSED ON BUILDING AND MANAGING TEAMS WHO ENGAGE USERS VIA DIGITAL METHODS AND IMPROVE THEIR EXPERIENCES. TODAY HE'S GOING TO SHARE WITH US THE KEYS TO SOCIAL MEDIA MEASUREMENT BEFORE, DURING AND AFTER SOCIAL MEDIA INITIATIVES. THANKS, JOSH. IS IT COMING UP? >> HERE BEING IT'S COMING UP. >> SORRY, BECAUSE OF THE CONTENT , WE'VE REVERSED THE ORDER. IF YOU COULD BRING JOSH'S UP. DELUNG. I THINK THEY'LL BE ABLE TO POP IS IT RIGHT UP. GREAT. >> Joshua Delung: OKAY. AWESOME. YEAH, SO I'M JOSH, AND I WANT TO TALK TO YOU TODAY A LITTLE BUILT ABOUT SOCIAL MEDIA AND MEASURING THE EFFECTIVE NSZ OF SOCIAL MEDIA. YOU'VE HEARD A LOT ABOUT DIFFERENT METHODS AND TOOLS AND STRATEGIES AND TACTICS, BUT WHAT I WANT TO EMPHASIZE TODAY IS REALLY THAT ALL OF THAT IS GREAT , BUT IF YOU DON'T KNOW HOW EFFECTIVE IT'S BEING AND WHAT YOU'RE GETTING OUT OF IT, IT'S TOUGH TO KNOW MORE WHAT TO DO MORE OF, LESS OF AND HOW TO ADAPT THOSE STRATEGIES AND TACTICS AND YOU CAN GET A LOT OF ACTUAL TORE YALZ ONLINE ABOUT HOW TO DOWNLOAD METRICS DATA AND GET DATA OUT OF DIFFERENT SOCIAL MEDIA TOOLS, SO I DON'T WANT TO TALK SO MUCH ABOUT THAT AS MUCH AS I WANT TO EMPHASIZE THE IMPORTANCE OF HOW YOU MEASURE AND WHY YOU MEASURE. PEOPLE USE A LOT OF DIFFERENT TERMINOLOGY WHEN TALKING ABOUT METRICS DATA. A LOT OF TERMS ARE USED INTERCHANGEABLY. I DON'T THINK IT'S THE MOST IMPORTANT THING THAT WE GET THE SEMANTICS OF HOW WE TALK ABOUT THIS CORRECTLY, BUT IT IS INTERESTING TO NOTE THAT THERE ARE SOME KEY DIFFERENTIATORS WHEN WE'RE TALKING ABOUT SOCIAL MEDIA METRICS. METRICS BEING THE UMBRELLA TERM, MEASURES BEING THINGS THAT ARE SUMMABLE VALUES THAT YOU CAN COUNT, THAT YOU CAN ADD UP IN YOUR DATA, AND ONE OF THE THINGS HA I REALLY WANT TO FOCUS ON HEAVILY TODAY ARE KEY PERFORMANCE INDICATORS OR KPI'S, AND THESE ARE PARTICULAR METRICS THAT ARE HELPING YOU TO LEARN MORE ABOUT THE EFFECTIVENESS OF YOUR SOCIAL MEDIA. IF YOU THINK ABOUT IT IN TERMS OF A BIG LIBRARY, YOUR KPI'S ARE REALLY KIND OF TAKING ALL THOSE METRICS WITHIN THAT LIBRARY AND HELPING YOU TO FIGURE OUT A LITTLE BIT BETTER WHAT'S ACTUALLY MOST IMPORTANT AND THEN YOU WANT TO LOOK AT THE CONTEXT AROUND YOUR METRICS AND HAVE CONTEXTUAL METRICS THAT HELP EXPLAIN WHY CERTAIN KPI'S MIGHT BE PERFORMING IN ONE WAY OR ANOTHER. SO ONE OF THE WAYS THAT YOU CAN KIND OF HELP CONTEXTUALIZE METRICS IS THINKING ABOUT CONTEXT BASED METRICS SUCH AS TIME, THE OPERATING ENVIRONMENT IN WHICH THE SOCIAL MEDIA IS TAKING PLACE, THINGS LIKE PLATFORM, CURRENT NEWS CYCLE, THINKING ABOUT THE DIFFERENT PROPERTIES OF THE CHANNELS THAT YOU'RE USING AS WELL AS WHAT SOME OF YOUR PREVIOUS BENCHMARKS ARE IN TERMS OF PERFORMANCE AND WHAT KIND OF MESSAGING YOU'RE USING. SO FOR EXAMPLE, IF YOU SEE THAT YOU HAD SIGNUPS FOR A CLINICAL TRIAL INCREASE IN A GIVEN MONTH AND YOU HAVE THIS REALLY GREAT METRICS TRICK, YOU WANT TO REALLY FIND -- METRIC, YOU WANT TO REALLY FIND OUT WHY, WHAT'S THE CONTEXT BEHIND THAT? WHAT REALLY WORKED TO MAKE THAT MORE SUCCESSFUL? SO MAYBE IT WAS, OH, WE SENT OUT MORE TWEETS THIS MONTH THAN WE DID LAST MONTH WITH THE LINK TO THE SIGN-UP. PERHAPS WE USED DIFFERENT MESSAGING OR DIFFERENT VISUALS THIS MONTH. SO THOSE ARE ALL ELEMENTS OF YOUR METRICS THAT CAN ADD CONTEXT AND HELP YOU UNDERSTAND WHY METRICS ARE PERFORMING IN CERTAIN WAYS ON. IF YOU THINK ABOUT HOW YOU CONTEXTUALIZE YOUR METRICS, YOU REALLY WANT TO DO THAT IN TERMS OF YOUR SOCIAL MEDIA GOALS. FOR EXAMPLE, IF YOU HAVE A PROGRAM WHERE YOU WANT TO MAKE SURE THAT ENTREPRENEURS WHO MAY BE WORKING ON A PARTICULAR TECHNOLOGY HAVE A BETTER UNDERSTANDING OF THAT PROGRAM AND MAYBE FUNDING THAT'S AVAILABLE TO THEM, A KP I FOR THAT GOAL SIMPLY COULD BE ON THE NUMBER OF RETWEETS WHAT YOU'RE GETTING ON TWITTER POSTS ABOUT THAT TOPIC. RIGHT? YOU'RE UNDERSTANDING THAT THE MORE THREECH YOU'RE GETTING FOR THAT CONTENT PERHAPS THE MORE EDUCATION THAT'S HAPPENING AND MORE PEOPLE ARE UNDERSTANDING IF IT'S WITHIN THE RIGHT AUDIENCE, BUT YOU REALLY WANT TO KNOW THE WHY BEHIND THAT SO THAT YOU CAN DO MORE OF THAT, SO YOU CAN HONE YOUR STRATEGIES AND TACTICS OVER TIME. YOU WANT TO KNOW HOW MUCH REFERRAL TRAFFIC WAS ACTUALLY GENERATED, WERE THE CONNECTIONS BETWEEN SIGNUPS AND A PARTICULAR POST ACTUAL THERE WILL OR DID THEY JUST HAPPEN TO TAKE PLACE AT THE SAME TIME. SO WHEN WE TALK ABOUT HOW WE MEASURE SUCCESS IN SOCIAL MEDIA I THINK IT'S IMPORTANT TO THINK ABOUT IT NOT NOT AS SOMETHING THAT HAPPENED WAY AT THE END OF OUR ACTIVITIES BUT AS SOMETHING THAT HAPPENS BEFORE, DURING AND AFTER, WHETHER THAT'S A PARTICULAR CAMPAIGN OR WHETHER THAT IS LAUNCHING A SOCIAL MEDIA ACCOUNT OR YOUR ONGOING EFFORTS. SO TALK A LITTLE BIT ABOUT WHERE TO START. IT REALLY BEGINS WITH SOME OF THE STUFF THAT JESSICA WAS TALKING ABOUT PREVIOUSLY IN TERMS OF STRATEGY. PART OF YOUR STRATEGY AND DEVELOPMENT SHOULD INCLUDE HOW YOU'RE GOING TO MEASURE AND HOW YOU'RE GOING TO KNOW WHEN YOU'RE SUCCESSFUL. IT'S GREAT TO SAY THAT YOU HAVE A STRATEGY AND THAT YOU'RE GOING TO LAUNCH A FACEBOOK ACCOUNT AND YOU'VE TIED IT TO YOUR AUDIENCE AND ALL THESE THINGS ARE VERY, VERY IMPORTANT. HOWEVER, YOU HAVE TO STOP AND ASK, WELL, WHAT REALLY ARE OUR GOALS AND OBJECTIVES HERE AND HOW ARE WE GOING TO KNOW WHEN WE'RE SUCCESSFUL? WHAT IS OUR DEFINITION OF SUCCESS? WHAT ARE THE KEY PERFORMANCE INDICATORS WE'RE GOING TO BE LOOKING FOR? IT'S NOT ENOUGH TO JUST KNOW WE GOT 50 RETWEETS AND 300 LIKES THIS MONTH. ALL THOSE DATA TABLES AND PULLING THAT DATA, THEY HAVE TO BE CONTEXTUALIZED, THEY HAVE TO BE SOMEHOW RANKED IN ORDER OF IMPORTANCE AND IN WHETHER OR NOT THEY'RE ACTUALLY HELPING YOU ACHIEVE YOUR GOALS. SO ONE OF THE WAYS THAT YOU CAN DO THIS IS GO BACK TO HOPEFULLY YOU'VE WRITTEN THE SOCIAL MEDIA STRATEGY, HOPEFULLY YOU HAVE DOCUMENTED YOUR GOALS AND OBJECTIVES, SO IF YOU GO BACK TO YOUR GOALS AND OBJECTIVES AND YOUR STRATEGIES AND YOU'VE MATRIXED THOSE, YOU CAN THEN BEGIN TO MAP YOUR DIFFERENT KEY PERFORMANCE INDICATORS TO EACH OBJECTIVE. SO IF YOU THINK ABOUT THE COLORED DOTS ON THE LEFT SIDE OF EACH OBJECTIVE AS A PARTICULAR LABEL FOR THAT OBJECTIVE, THEN YOU CAN START TO BRING YOUR OBJECTIVES INTO A KEY PERFORMANCE INDICATORS OR KPI'S FRAMEWORK MODEL. IF YOU THINK ABOUT THE DOTS ON THE LEFT ARE MAPPED TO PARTICULAR OBJECTIVES THAT YOU WANT TO ACHIEVE AND YOU'RE NOW STARTING TO TIE EACH ONE OF THOSE OBJECTIVES TO PARTICULAR METRICS, TO PARTICULAR KPI'S. AND THESE ARE SAMPLES. YOU MAY HAVE MORE THAN ONE AT EACH LEVEL OF THIS FRAMEWORK. THIS FRAMEWORK IS REALLY A FUNNEL, AND IT'S REALLY BASED ON THE TRADITIONAL MARKETING FUNNEL WHERE TRADITIONALLY CONSUMERS MOVE FROM AWARENESS TO RELIANCE ON A PRODUCT, AND THEY BECOME SORT OF BRAND AMBASSADORS. YOU CAN SORT OF USE THE SAME FRAMEWORK FOR ANY SOCIAL MEDIA EFFORT AND THINK ABOUT HOW MUCH YOU'RE ASKING OF THE USER AT EACH STEP AND WHAT KINDS OF KPI 'S BELONG IN EACH LEVEL OF THE FUNNEL. WHAT THIS DOES IS THIS HELPS YOU TO RANK KPI'S AND REALIZE THAT WHILE EACH ONE IS HELPING YOU LEARN SOMETHING ELSE ABOUT HOW EFFECTIVE YOUR SOCIAL MEDIA EFFORTS ARE, THEY'RE NOT ALL CREATED EQUAL. SIGNING UP FOR SOMETHING ON THE SITE IS NOT AN EQUAL METRIC TO SOMEONE SIMPLY LIKING ONE OF YOUR POSTS. THEY HAVE DIFFERENT LEVELS OF VALUE. SO WHERE DO YOU GET ALL OF THIS DATA? PART OF THIS PREPARATION PHASE AND MEASURING SOCIAL MEDIA IS REALLY TO THINK ABOUT WHERE ARE YOUR DATA SOURCES, WHERE ARE THESE METRICS GOING TO ACTUALLY COME FROM? AND YOU'RE PROBABLY FAMILIAR WITH PULLING NATIVE ANALYTICS DATA FROM FACEBOOK INSIETSZ OR TWITTER ANALYTICS OR PERHAPS EVEN USING SOME THIRD PARTY TOOLS TO HELP MEASURE ACROSS OTHER PLATFORMS THAT HAVE LESS ROBUST ANALYTICS CAPABILITIES. ONE OF THE ONES THAT I THINK IS IMPORTANT NOT TO LEAVE OUT IS GOOGLE ANALYTICS AND YOU MIGHT SAY OH, WOW, WELL, THAT'S A WEBSITE TOOCIALG THAT'S THE MEASURE, THE TRAFFIC ON -- WEBSITE TOOL, THAT'S THE MEASURE ON MY WEBSITE, IT COULD BE GOOGLE ANALYTICS, WHATEVER TOOL YOUR ORGANIZATION USES, BUT I THINK THIS IS IMPORTANT FROM A SOCIAL MEDIA PERSPECTIVE BECAUSE QUITE OFTEN THE USER'S JOURNEY DOES NOT END AT THE SOCIAL MEDIA POST. QUITE OFTEN YOU'RE TRYING TO DRIVE THEM TO SOMEWHERE ELSE. SO IT'S IMPORTANT TO USE THINGS LIKE CAMPAIGN URL'S AND MAKE SURE THAT YOU'RE ACTUALLY TRACKING HOW MUCH OF YOUR REFERRAL TRAFFIC IS COMING FROM SOCIAL MEDIA, WHAT ARE THOSE USERS DOING, WHAT PATHS ARE THEY TAKING ONCE THEY GET TO YOUR SITE AND HOW MANY OF THEM ARE ACTUALLY IN THE MARKETING WORLD YOU MIGHT SAY CONVERTING, BUT TAKING THE INTENDED ACTION THAT YOU HAD FOR THEM, LIKE JESSICA SAID, IT'S IMPORTANT TO HAVE THAT ONE CALL TO ACTION. HOW MANY PEOPLE ARE ACTUALLY TAKING ADVANTAGE OF THAT CALL TO ACTION? ANOTHER ASPECT IS TO THINK ABOUT AFTER YOU'VE GATHERED ALL THAT DATA, HOW DO YOU THEN REPORT IT? THERE ARE OF COURSE MULTIPLE WAYS THAT YOU CAN DO THAT. ONE OF THE WAYS THAT'S REALLY HELPFUL IS TO USE A SIMPLE TOOL LIKE GOOGLE DATA STUDIO, THINK ABOUT CREATING A DASHBOARD FOR THOSE ANALYTICS SO THAT YOU'RE ABLE TO KIND OF PLAY WITH THE NUMBERS AND MISHMASH THEM A LITTLE BIT, KIND OF ANSWER RESEARCH QUESTIONS AS THEY COME ALONG THROUGH THE COURSE OF YOUR SNEED ACTIVITIES. IF YOU'RE DOING TRADITIONAL REPORTING AND YOU'RE CREATING REPORTS IN WORD DOCUMENTS OR WHATEVER IT MIGHT BE AFTER YOU PULL YOUR DATA, IT'S STILL IMPORTANT TO I THINK THE TENDENCY SOMETIMES IS TO PULL ALL THE DATA TABLES, PUT THEM IN A DOCUMENT AND THROW THEM OVER THE FENCE TO WHATEVER STAKEHOLDERS ARE INTERESTED, BUT IT'S REALLY IMPORTANT TO THINK ABOUT WHAT ARE THE RESEARCH QUESTIONS AND WHAT ARE THE RECOMMENDATIONLESS THAT SHOULD BE GOING INTO THESE REPORTS? IT'S NOT ENOUGH TO JUST PUT THE DATA OUT THERE AND SAY THIS IS WHAT HAPPENED THIS MONTH COMPARED TO LAST MONTH. WHAT DOES IT ACTUALLY MEAN? HOW DO WE CONTEXTUALIZE THAT AND HOW DO WE MAKE RECOMMENDATIONS TO IMPROVE OUR EFFORTS MOVING FORWARD BASED ON THAT INFORMATION? IT'S ALL ABOUT DETERMINING WHAT STRUCTURE IS BEST FOR YOU. SOME STAKEHOLDERS HAVE DIFFERENT PREFERENCES FOR HOW THEY WANT TO RECEIVE YOUR REPORTED DATA, HOW THEY WANT TO RECEIVE YOUR RECOMMENDATIONS, SO THERE'S NO ONE RIGHT OR WRONG ANSWER BUT IT'S REALLY ABOUT WHAT'S BEST FOR YOUR ORGANIZATION, THINKING ABOUT THINGS IN TERMS OF FREQUENCY AS WELL. SOME ORGANIZATIONS HAVE A LOT OF DATA. THEY COULD BE LEARNING A LOT FROM WEEK TO WEEK RS WHEREAS OTHER ORGANIZATIONS MAY NEED TO REPORT MONTHLY OR QUARTERLY IN TERMS PUTTING TOGETHER THE MORE ROBUST LONGER REPORTS BECAUSE THEY DON'T HAVE AS MUCH DATA, THEY WON'T BE ABLE TO SEE AS MANY MOVING TRENDS IN AS SHORT AMOUNT OF TIME. I THINK ONE OF THE IMPORTANT THINGS TOO IS TO NOT BECOME RELIANT ON WAITING FOR THE REPORTS. I'LL TALK A LITTLE BIT IN A SECOND ABOUT CONTINUOUS REPORTING AND HOW IMPORTANT THAT IS. DON'T JUST WAILT FOR THE ANALYTICS REPORT, CONSTANTLY BE ASKING FOR, YOU KNOW, ASKING RESEARCH QUESTIONS AND TRYING TO ANSWER HOW THINGS ARE GOING THROUGHOUT THE COURSE OF YOUR SOCIAL MEDIA EFFORT SO YOU CAN ADJUST COURSE MIDSTREAM IF YOU NEED TO, DO MORE WHAT'S WORKING INSTEAD OF WAITING UNTIL THE END AND FINDING OUT THAT YOU WASTED A LOT OF TIME AND EFFORT. I DID WANT TO TOUCH ALSO UPON BENCHMARKING. I THINK A LOT OF GOVERNMENT ORGANIZATIONS ESPECIALLY THEY WANT TO KNOW HOW THEY SHOULD BE PERFORMING COMPARED TO OTHERS, AND I THINK BENCHMARKING HAS A LOT OF LIMITATIONS IN THE GOVERNMENT SPACE BECAUSE EACH ORGANIZATION HAS A REALLY UNIQUE AUDIENCE. IT'S NOT ALWAYS AS LARGE OF AN AUDIENCE AS SAY THE COCA-COLAS THAT WE'RE COMPETING WITH IN THE SOCIAL MEDIA SPHERE AS WAS MENTIONED EARLIER. IT'S IMPORTANT REALLY TO USE YOUR OWN DATA PRIMARILY, STARTED TO COLLECT THIS ON A REGULAR BASIS AND LOOK AT YOUR OWN BENCHMARKS OVER TIME. SO THAT'S A LITTLE BIT ABOUT PREPARATION. DURING THE EXECUTION OF YOUR SOCIAL MEDIA ACTIVITIES AS I MENTIONED IT'S REALLY IMPORTANT TO DO CONTINUOUS MEASUREMENT. A LOT OF THE ENGAGEMENT ON SOCIAL MEDIA HAPPENS VERY EARLY ON AFTER YOU HAVE POSTED THE CONTENT. IT'S REALLY IMPORTANT TO LOOK AT WHAT'S HAPPENING WITHIN THE FIRST FEW HOURS OF CONTENT GOING LIVE, NOT TO WAIT UNTIL THE END OF THE MONTH TO MEASURE IT. YOU CAN ALSO USE SOCIAL MEDIA LISTENING TOOLS TO HELP WITH MEASUREMENT. THERE WERE A LOT OF THEM OUT THERE. SOME ARE BETTER THAN OTHERS DEPENDING ON YOUR NEEDS AND IT'S IMPORTANT TO MICROTAILOR YOUR CONTENT BASED ON WHAT PEOPLE ARE SAYING ON SOCIAL MEDIA AND YOU CAN ALSO USE LISTENING TOOLS IN REALTIME TO SEE HOW PEOPLE ARE REACTING TO YOUR CONTENT. THEN AT THE END OF THE CAMPAIGN OR AS YOU'RE DELIVERING WEEKLY OR MONTHLY OR QUARTERLY ANALYTICS REPORTS, THE LAST STEP THAT'S REALLY IMPORTANT NOT TO LEAVE OUT IS ACTION PLANNING. A LOT OF TIMES THE REPORTS ARE CREATED ON A MONTHLY BASIS, IT BECOME SAYS THIS SORT OF ROUTINE ROTE AND HER SIZE AND NOTHING REALLY HAPPENS AFTER THOSE REPORTS ARE DELIVERED. IT'S VERY IMPORTANT THAT THERE'S ACTION PLANNING THAT COMES OUT OF THOSE, THAT YOU'RE ACTUALLY LOOKING AT THOSE CONTEXTUAL METRICS TO FIGURE OUT WHAT YOU CAN IMPROVE AND HOW, SO YOU MIETD WANT TO LOOK ALTHOUGH THINGS LIKE WHAT WOULD BE OUR OBJECTIVE BASED ON OUR REPORTING , WHAT TACTICS CAN WE USE IN ORDER TO ACHIEVE THAT OBJECTIVE AND THEN THINGS LIKE BARRIERS, TIME LIENLZ, WHO IS GOING TO OWN THAT AND HOW MANY RESOURCES IS IT GOING TO TAKE SO YOU CAN REALLY GET DELIBERATE ABOUT MOVING FORWARD IN A GOOD WAY AFTER YOUR REPORTING. I JUST WANT TO LEAVE YOU WITH SORT OF A RECAP AND SIX KEYS TO DOING METRICS. SO I THINK IT'S IMPORTANT TO START EARLY. START THINKING ABOUT IT AS YOU'RE THINKING ABOUT YOUR SOCIAL MEDIA STRATEGY, MAKE IT PART OF THAT EARLY PROCESS, NOT SOMETHING THAT TAKES PLACE AT THE END, DO IT THROUGHOUT, NOT JUST WHEN YOU'RE DELIVERING REGULAR REPORTS. DIFFERENTIATE BETWEEN YOUR TYPES OF METRICS, THAT BEING NOT ALL METRICS ARE CREATED EQUAL. MAP YOUR METRICS TO YOUR GOALS. MAKE SURE THAT YOU'RE ACTUALLY MEASURING THINGS THAT YOU'RE GOING TO BE ABLE FOINT TO TO SAY WE ACHIEVED GOAL 1 OR GOAL 2 IN OUR STRATEGIC PLAN FOR SOCIAL MEDIA. MAKE YOUR REPORTS MORE USEFUL INSTEAD OF LONG NARRATIVES OR LISTS OF DATA TABLES, REALLY START TO INCLUDE RECOMMENDATIONS AND ACTION PLANNING AND MAKE SURE THAT THAT ACTION PLANNING IS TAKING PLACE AND THAT IT'S HAPPENING IN A VERY DELIBERATE WAY AND THE KEY STAKEHOLDERS ARE ENGAGED AND KNOW THAT YOU'RE ACTUALLY USING DATA TO INFORM YOUR APPROACH MOVING FORWARD. AND I THINK WE'LL HAVE ACTUALLY QUESTIONS LATER, SO I WILL TURN IT OVER TO ERIN. [APPLAUSE] >> THANKS, JOSH. LAST WE HAVE ERIN FORDYCE, SHE'S A RESEARCH METHODOLOGIST WITH THE STATD STICKS AND METHODOLOGY DEPARTMENT AT N ON RC AT THE UNIVERSITY OF CHICAGO. ERIN HAS SIX YEARS OF EXPERIENCE IN THE SOCIAL SCIENCE RESEARCH FIELD AND SPECIALIZES IN WEB SURVEY DESIGN, QUESTIONNAIRE DEVELOPMENT AND MULTIMODE APPROACHES. TODAY SHE'S GOING TO BE PRESENTING FOR US TO SOCIAL MEDIA RECRUITMENT PARTICULARLY FOR HARD TO REACH POPULATIONS. THANKS ARE ERIN. >> Erin Fordyce: THANK YOU. GOOD MORNING. I'M GOING TO START MY PRESENTATION BY JUST GOING OVER SOME GENERAL GUIDELINES OR THINGS TO KEEP IN MIND IF YOU'RE TRYING TO DETERMINE WHETHER TO USE SOCIAL MEDIA FOR YOUR PROJECTS. I'M NOT GOING TO GO TOO MUCH IN DEPTH BECAUSE JESSICA DID AN AMAZING JOB OF COVERING THAT P TO I CAN FOR ME. SO THANK YOU. THEN I'M GOING TO ACTUALLY APPLY ALL THE INFORMATION YOU'VE GOT ALREADY THIS MORNING INTO HOW IT CAN BE USED IN AN ACTUAL PROJECT THERE'S A LOT OF BENEFITS TO USING SOCIAL MEDIA, WE KNOW THAT THERE'S DECREERSING RESPONSE RATES IN OTHER MODES, FEWER HOUSEHOLDS HAVE LANDLINES FOR DIALING, FEWER RESPONDENTS ARE WILLING TO OPEN THE JUNK MAIL ON YOU'RE GETTING MAIL TO, RIGHT? WE KNOW THERE'S ADVANCING TECHNOLOGY, SO PEOPLE HAVE MORE ACCESS TO MOBILE DEVICES, SMARTPHONES, TABLETS AND THEY HAVE BETTER ACCESS TO THE INTERNET. IF SOCIAL MEDIA IS USED THE RIGHT WAY, IT CAN BE VERY COST-EFFECTIVE AND BE A FASTER MEANS OF COLLECT EGG DATA. IT CAN ALSO BE A GOOD MEANS AS THE TOPIC OF MY PRESENTATION INDICATES, OF GETTING TO HARD TO REACH POPULATIONS. IT'S ALSO A WAY TO DECREASE RESPONDENT BURDEN. YOU'RE NOT EXPECTING THEM TO PICK UP THE PHONE AND TALK TO AN INTERVIEWER, THEY'RE NOT EXPECTED TO OPEN THEIR MAIL AND READ THROUGH THAT. IF THEY HAPPEN TO SEE IT WHEN THEY'RE SCROLLING THROUGH THEIR PROFILE AND THEY WANT TO CLICK ON IT AND PARTICIPATE, THEN GREAT. IT'S REALLY PUG THE BALL IN THEIR COURT. BUT ON THE OTHER HAND, THERE'S ALSO GOING TO BE DISADVANTAGES. WE KNOW THERE'S POTENTIAL BIAS BECAUSE YOU'RE NOT JUST FOCUSING ON THE PERCENTAGE OF PEOPLE WHO ARE ONLINE. WITHIN THAT, YOU'RE LOOKING AT THE PERCENTAGE THAT ARE ACTIVE ON SOCIAL MEDIA AND WITHIN THAT YOU'RE LOOKING AT THE PERCENTAGE WHO ARE ACTIVE ON ANY PARTICULAR SITE. THERE'S ALSO MODE EFFECTS AND DATA QUALITY THAT'S ALWAYS GOING TO BE A CONCERN FOR RESEARCHERS, RIGHT? SO I'LL TALK ABOUT THAT IN A MINUTE. AND ALSO SITE POPULARITY CHANGES THIS WAS SOMETHING REALLY INTERESTING, THIS IS A DIAGRAM TAKEN FROM A STUDY AT NORC JUST RECENTLY THAT THEY CONDUCTED, AND WHAT CAWLT MY DISAISH CAUGHT MY EYE IS THAT FACEBOOK HAS DROPPED A LITTLE BIT IN POPULARITY. JUST A FEW YEARS AGO FOR OUR STUDY, FACEBOOK OF THE NUMBER ONE SITE, BUT THINGS ARE CONSTANTLY CHANGING, PARTICULARLY AMONG THE TEEN POPULATION, WHICH IS WHAT I WAS FOCUS ODD FOR MY STUDY. MESSAGING APPS CAN ALSO BE A VERY EFFECTIVE APPROACH TOO IF YOU WANT TO POST ADS TO THESE SITE AS WELL. NOW, I KNOW THAT KICK PERSONALLY THEY DON'T POST ADS, WE TRIED T MAYBE MOVING FORWARD THESE THINGS WILL CHANGE. IN TERMS OF SAMPLE LG AND DATA CAUGHT QUALITY -- AND DATA QUALITY, WE KNOW IF YOU'RE USING SOCIAL MEDIA, IT'S GOING TO BE A -- MURPHY AND COLLEAGUES FOUND , HOW REPRESENTATIVE THE SOCIAL MEDIA POPULATION IS TO THE GENERAL POPULATION. THERE'S CERTAINLY GOING TO BE COVERAGE ERROR. IF YOU HAVE AN INDIVIDUAL WITH MULTIPLE ACCOUNTS ON ONE PROFILE , SHARED ACCOUNTS, SEEN THIS ON FACEBOOK, WHEN A COUPLE GETS MARRIED AND THEY DECIDE TO SHARE A PROFILE. AND ALSO ACCOUNTS THAT CAN REPRESENT A COMPANY OR PRODUCTS AS OPPOSED TO AN INDIVIDUAL. SO HOW DO YOU REALLY GO ABOUT MEASURING THE QUALITY OF YOUR DATA THAT YOU RECEIVED? WELL, I KNOW ON A LOT OF MY PROJECTS THE FIRST THING WE DO IS WE LOOK AT STRAIGHT LINERS, PEOPLE WHO ARE JUST CLICKING THROUGH THE SURVEY AS FAST AS THEY CAN ESPECIALLY IF YOU'RE OFFERING AN INCENTIVE, SO WE'LL LOOK AT ARE THEY ANSWERING THE FIRST RESPONSE OPTION OR THE LAST RESPONSE OPTION THROUGHOUT THE SURVEY? WE ALSO LOOK ALTHOUGH BREAKOFF POINTS OR NONSUBSTANTIVE ANSWERS , THAT'S WHEN THEY'RE PUTTING DON'T KNOW OR PREFER NOT TO ANSWER THROUGHOUT THE SURVEY. YOU CAN ALSO LOOK AT THE DEVICE THEY'RE COMPLETNG ON, EXPERIMENT WITH INCENTIVES A BIT , SO NOW I WANT TO JUMP QUICKLY INTO THE STUDY, WE ACTUALLY JUST FINISHED THIS UP, FINISHED DATA COLLECTION LIKE A MONTH AGO, SO THIS IS HOT OFF THE PRESS FOR YOU. WE WORKED ON THIS WITH THE CDC ADOLESCENT DIVISION OF SCHOOL HEALTH OR DASH. THEY NOTICED INCREASING RATES OF HIV INFECTION PARTICULARLY AMONG MALES WHO HAVE SEX WITH MALES, WE REFER TO THEM AS MSM, OR TRANSGENDER INDIVIDUALS. SO OUR GOAL WAS TO CONDUCT A WEB SURVEY USING SOCIAL MEDIA FOR RECRUITMENT BECAUSE WE'RE NOT GOING TO SEND A LETTER TO HOUSEHOLDS, RIGHT? WE'RE NOT GOING ON USE A RANDOM SAMPLE AND SAY HEY, IS YOUR CHILD GAY? PLEASE COMPLETE THE SURVEY. SO SOCIAL MEDIA WAS REALLY OUR BEST OPTION, RIGHT? SO WE STARTED WITH DOING COGNITIVE INTERVIEWS AND THEN WE MOVED INTO OUR PILOT PHASE AND THEN THE FULL STUDY. SO WE STARTED BY CREATING OUR ADS. WE DID BOTH STATIC IMAGE AND VIDEO ADS. THEY WERE DESIGNED TO TARGET ONE OF THREE GROUPS, EITHER MSM, TRANS, OR THE GENERAL TEEN POPULATION. SO WHY THE GENERAL TEEN POPULATION? WELL, WE'RE GOING AS WE STARTED WITH 13-YEAR-OLDS. SO AT THAT AGE YOU MIGHT NOT HAVE ESTABLISHED YOUR GENDER IDENTITY OR SEXUAL ORIENTATION YET, SO WE WANTED TO INCLUDE THOSE WHO MIGHT STILL BE QUESTIONING. WE ALSO DESIGNED SOME OF OUR ADS TO TARGET BLACK AND HISPANIC. WE EXPERIMENTED A BIT WITH THE ELIGIBILITY LANGUAGE, SO SOME ADS SPECIFICALLY MENTIONED WHO WAS ELIGIBLE, WHEREAS OTHER ADS DIDN'T. THE ADS WERE DEVELOPED BY MYSELF AND MY COLLEAGUES AT NORC WITH FEEDBACK FROM THE CDC AND WHAT WE REFER TO AS THE YCAB, YOUTH COMMUNITY ADVISORY BOARD, PUT TOGETHER BY THE FENWAY INSTITUTE IN BOSTON, INCLUDED TEENS VERY REPRESENTATIVE OUR TARGETED POPPING. SO WE GOT A LOT OF VERY GOOD HELPFUL FEEDBACK FROM THEM. SO WE ENDED UP POSTING ADS ON FACEBOOK, INSTAGRAM, SNAPCHAT AND GOOGLE. SO YOU MIGHT SAY WHY GOOGLE, HOW DOES THAT FIT IN? WE ALSO WANTED TO INCLUDE TEENS WHO MIGHT NOT BE AS ACTIVE ON SOCIAL MEDIA OR THEY MIGHT BE FEARFUL OF CLICKING ON SUCH AN AD ON THEIR PROFILE. SO I WANT TO TALK ABOUT OUR TARGETING A LITTLE BIT. THIS IS THE SPECIFICATIONS WE LISTED OUT ON THESE SITES. SO WITH FACEBOOK AND INSTAGRAM YOU CAN SEE THE DIFFERENT SPECIFICATIONS FOR EACH GROUP. WE ADDED SOME ADDITIONAL INTEREST FOR TRANS, BECAUSE WE KNEW IT WAS ALREADY GOING TO BE HARD TO TARGET THIS POPULATION, SO WE WANTED TO NARROW IT DOWN A BIT. SO WE PICKED SOME PUBLIC FIGURES , CELEBRITIES, GROUPS THAT ARE POPULAR AMONG THE LGBTQ POPULATION. THEN HERE YOU CAN SEE THE TARGET ING FOR SNAPCHAT. NOW, SNAPCHAT, YOU GET CHARGED FOR EACH CAMPAIN THAT YOU POST, SO WE STARTED WITH ONE CAMPAIGN AND THEN LATER OR WE EXPANDED TO TWO. SO THE FIRST CAMPAIGN INCLUDED THESE LIKES YOU SEE LISTED HERE AND THEN THE SECOND CAMPAIGN WE DROPPED THAT. THEN WITH GOOGLE AD WORDS THAT'S SIMPLY JUST A TEXT AD AS YOU CAN SEE HERE, IT'S NOT AN IMAGE, IT'S NOT A VIDEO. SO WE USED A BUNCH OF KEYWORDS WHENEVER WE WERE TARGETING FOR GOOGLE. SO NOW I'M GOING TO MOVE INTO OUR METHODOLOGY. YOU'LL SEE EVERYTHING IS DIVIDED INTO PHASES, AND A PHASE SAY PERIOD OF TIME WHEN THE ADS WERE LIVE. SO AFTER EACH PHASE WE WOULD SHUT DOWN OUR ADS, LOOK AT OUR DATA, SEE IF THERE WERE ANY CHANGES WE NEED TO MAKE, AND THEN WE WOULD MOVE INTO OUR NEXT PHASE. SO PHASE I AND TWO MAKE UP THE PILOT, PHASE IT THREE AND WHAT'S NOT SHOWN HERE FOUR MAKE UP THE FULL STUDY. FOR TIME'S SAKE I WASN'T ABLE TO INCLUDE FAILTZ FOUR -- PHASE FOUR SO ALL THE DATA YOU'LL SEE IN THE PILOT IN THE FIRST FAILS OF THAT STUDY. OUR GOAL WAS TO GET 100 COMPLETES, 50MSM, 50 TRAN. WE EXPECTED 30 DAYS. THE TIME PERIOD OUT FOR THE PILOT, LESS THAN 24 HOURS. I POSTED THE ADS AT 5:00 P.M. ON FRIDAY, AND ABOUT 6:00 A.M. THE NEXT MORNING I WAS CHECKING FIRST THING. WE HAD OVER 100 COMPLETE. SO MY RESPONSE WAS SHUT IT DOWN. I WAS LIKE SOMETHING IS WRONG, WE'VE GOT A BOTD, THERE'S NO WAY THIS MANY PEOPLE, SO I SHUT IT DOWN. MY TEAM IS LIKE OKAY, OKAY. YOU CAN SEE WE WAITED ALMOST A MONTH BEFORE WE POSTED THE ADS AGAIN BECAUSE WE WANTED TO BE SO THOROUGH IN REVIEWING OUR DATA TO MAKE SURE NOTHING WAS WRONG. FOR THOSE OF YOU WONDERING, THERE WAS NO BOT, SO WE'RE GOOD. YOU'LL SEAL AFTER THE PILOT WE DROPPED DWOOLG GOOGLE, WE GOT ZERO COMPLETES FROM GOOGLE AND LESS THAN 100 PEOPLE CLICKED ON THE AD. IT WASN'T EFFECTIVE FOR US. THAT'S NOT TO SAY GOOGLE NEVER WORKS TION NORC USES IT FOR OTHER PROJECTS PARTICULARLY RECRUITLY ADULTS BUT FOR OUR PURPOSES IT DIDN'T WORK. SNAP CHALT WASN'T POSTED FOR PHASE 26789 WE WORKED WITH A THIRD PARTY VENDOR TO POST THE ADS FOR US, SO NOORNG I TURNED ON FACEBOOK AND INSTAGRAM AND I NOTIFIED THE VENDOR I'M LIKE WE'RE READY TO GO. ABOUT TWO, THREE HOURS LATER WHEN THEY RESPONDED, WE HAD ALREADY MAXED OUT OUR TARGET FOR THE PILOT. I SAID DON'T WORRY ABOUT IT, WE'LL WAIT UNTIL THE NEXT FAITZ. NOW, IF YOU TAKE ANYTHING AWAY FROM MY PRESENTATION, THIS IS THE POINT WHERE WE GET TO THE REALLY IMPORTANT INFORMATION. SO THIS IS WHAT'S GOING TO SAVE YOU TIME AND MONEY ON YOUR PROJECTS. AFTER PHASE I WE NOTICED THAT A SIGNIFICANT NUMBER OF PEOPLE WERE GOING THROUGH AND PUTTING DON'T KNOW, PREFER NOT TO ANSWER WE WERE OFFERING A $10 GIFT CARD , SO THERE YOU GO. SO WHAT WE DID WAS OUR PROGRAMMER WENT IN AND THEY UP DATED THE SURVEY TO WHERE IF THEY ANSWERED THE FIRST FIVE QUESTIONS AFTER THE SCREENER AS DON'T OR PREFER NOT TONESS A, THEY WERE SENT TO THE IN ELIGIBILITY SCREEN. SO YOU MIGHT SAY WHY THE FIRST FIVE QUESTIONS? WELL, THEY WEREN'T TRIVIAL, THEY WEREN'T SENSITIVE QUESTIONS, YOU WOULD EXPECT PEOPLE TO KNOW THE ANSWER. SO JUMPING DOWN OUR GIFT CODE CAP, WE SET OUR SURVEY UP TO WHERE WE WOULD ONLY GIVE OCCUPANT A MAX OF 50 GIFT CARDS A DAY. AFTER THAT, ANYBODY ELSE COMES IN, THEY GET A LINK WITH I A MESSAGE SAYING SORRY COME BACK TOMORROW AND YOU CAN COMPLETE THE SURVEY. BUT OUR GIFT CODE CAP RESET EVERY DAY AT MIDNIGHT, SO BY ABOUT 3 OR 4:00 A.M. WE MACKED OUT ON OUR GIFT CODES. SO IF THAT'S HAPPENING EVERY DAY , YOU'RE NOT GETTING AS RECHT TIVE OF A SAMPLE -- REPRESENTATIVE A SAMPLE AS YOU COULD GET. SO THE PROGRAM YOU ARE UPDATED SO THE OFFSET TIME WOULD UPDATE ABOUT 3:00 P.M. EVERY DAY ABOUT THE TIME KIDS WERE GETTING OUT OF SCHOOL. ALSO POTENTIAL FOR AD SHARING,& ON AS A RESULT AFTER I SHUT IT DOWN, I COME TO THE OFFICE ON MONDAY AND WE HAVE ANOTHER 100 COMPLETES. ARE YOU SERIOUS? SCHEERL PEOPLE ARE SHARING THE ADS WHICH NORMALLY WOULDN'T BE A PROBLEM, BUT WHEN THE WE'RE TRYING TO CONSERVATIVE OUR COMPLETES AND REVIEW OUR DATA WE DON'T WANT MORE COMPLETES COMING IN. SO AFTER SUBSEQUENT FAILTZS OUR PROGRAMMER WOULD SHUT DOWN THE OPEN SURVEY LINK UNTIL WE WERE READY TO POST THE ADS AGAIN. WE ALSO NOTICED DUPLICATE THE SURVEY. THROUGHOUT DATA COLLECTION WE USED GOOGLE RECAPTURE, EVERYBODY KNOWS WHAT THAT IS, YOU TRY ON CLICK ON A SITE, IT SAYS CLICK THIS BOXES TO SHOW YOU'RE NOT A BOT. AFTER PHASE I WE ALSO ADDED RELEVANT ID WHICH IS BASICALLY TAKING DIGITAL FINGERPRINTS OF YOUR DEVICE YOU'RE USING SO YOUR BROWSER, VERSION NUMBER, ALL THAT. SO IF YOU TRY TO COME IN AGAIN ON THAT SAME DEVICE, IT'S GOING ON U AS A DUPLICATE AND SEND YOU TO THE INELIGIBILITY SCREEN. NOW IS THE FUN PART. OKAY. I CAN JUST START TALK BEING OUR RESULTS. WE POSTED QUITE A FEW ADS. I'M GOING TO SHOW YOU THE TOP FIVE IN TERMS OF THE NUMBER OF COMPLETES WE GOT BECAUSE WHEN YOU'RE WANTING TO DETERMINE THE SUCCESS OF YOUR ADS, YOU DON'T WANT TO JUST FOCUS ON THE NUMBER OF AD CLICKERS YOU WANT TO KNOW HOW MANY PEOPLE ACTUALLY WENT THROUGH AND COMPLETE THE SURVEY. -- COMPLETED THE SURVEY. SO HOPEFULLY THIS WORKS. I DON'T KNOW IF THEY'RE ABLE TO CLICK ON THE AD ON THE LEFT. YEAH, I'M CLICKING ON T BUT IT'S NOT -- SCHIK OG IT -- YEAH I'M CLICKING ON IT, BUT IT'S NOT -- IT WORKED THIS MORNING. IF THEY CAN JUST CLICK ON THE IMAGE ON THE LEFT, IT SHOULD PLAY. ANYWAY, WHILE THEY WORK ON THAT IS CORRECT THE AD ON THE LEFT IS A VIDEO AD, WAS DESIGNED TO TARGET TRANSRESPON DERNGHTS ON THE MIDDLE AND THE RIGHT -- TRANS AND RESPOND DENTS, MIDDLE AND THE RIGHT WERE DESIGNED TO TARGET MSM. SNAPCHAT THEY ONLY ALLOW VIDEO ADS. STALT I CAN ADS WERE JUST FACEBOOK AND INSTAGRAM. I CAN COME BACK TO THESE ONCE THEY GET IT WORKED OUT. HERE RUNNING OUT THE TOP FIVE, THE ONE ON THE LEFT DESIGNED TO TARGET TRANS, THE ONE ON THE RIGHT DESIGNED TO TARGET MSM AGAIN. ALL RIGHT. SO GOING INTO THE NUMBERS, IN THIS CHART I EXCLUDED GOOGLE BECAUSE OBVIOUSLY IT DID NOT WORK WELL, BUT THAT DOES EXPLAIN WHY THE NUMBERS DON'T ADD UP TO THE TOTALS COLUMN. SO HOW YOU WOULD READ THIS IS YOU LOOK AT THE NUMBER OF CASES THAT ENTER THE SURVEY FROM EACH PARTICULAR SITE AND THEN YOU GO DOWN AND SEE THE PERCENTAGE THAT MADE IT THROUGH EACH STEP OF THE SURVEY. NONRESPONSE INELIGIBLE MEANS THEY WERE CLICKING DON'T KNOW, PREFER NOT TO ANSWER. WHAT I WANT YOU TO NOTICE IS ON SNAPCHAT. YOU ORIGINALLY THINK WOW, WE GOT A LOT OF CASES FROM SNAPCHAT, DID WELL, RIGHT? LOOK AT THE BOTTOM, ONLY 18 PERCENT OF THOSE PEOPLE ACTUALLY WENT THROUGH AND COMPLETED THE SURVEY. SO YOU REALLY HAVE TO LOOK AT THE WHOLE PICTURE AND NOT JUST HOW MANY CLICKS YOU'RE GETTING, HOW MANY PEOPLE START FROM ANY PARTICULAR SITE. I CAN TELL YOU THIS IS FOR THE PILOT IN PHASE III, AFTER WE FINISHED THE WHOLE DATA COLLECTION, WE ACTUALLY ENDED UP WITH ABOUT 1500 COMPLETES FROM EACH GROUP, FROM MSM AND TRANS. THEN THIS TABLE IS SHOWING YOU HOW FOR EACH OF OUR GROUPS OF INTEREST, SO BLACK, HISPANIC, 13 TO 14-YEAR-OLDS AND TRANSBORN MALE WHICH SITES THEY WERE RECRUITED FROM FOR THOSE COMPLETED CASES. SO WE KNOW FACEBOOK, INSTAGRAM AND SNAPCHAT ALL WORKED VERY WELL FOR US. WE COLLECTED OUR DATA VERY QUICKLY AND A LOT LOWER IN COST THAN WE ORIGINALLY PRODGED. GOOGLE -- ORIGINALLY PROJECTED. GOOGLE, NOT SO MUCH. DRLZ COMING THROUGH TRYING TO CLICK THROUGH AS FAST AS THERKS USE FAKE E-MAIL SO THEY CAN GET ADDITIONAL GIFT CODES. ALSO WE'RE STILL GOING TO HAVE COVERAGE ISSUES, AND THE ISSUE WITH AD SWHAIRG. WITH AD SHARING. I KNOW EVERYBODY IS PROBABLY WONDERING ABOUT THE FACEBOOK DATA BREACH, THE RECENT TESTIMONY IN FRONT OF CONGRESS. FOR US THAT HAPPENED RIGHT BEFORE PHASE 4 SO VERY CONVENIENT TIMING. WHAT I NOTICED WAS EVERY TIME YOU SHUT DOWN YOUR ADS AND YOU TURN THEM BACK O YOU HAVE TO GO THROUGH THAT APPROVAL PROCESS AGAIN, SO THERE WAS A BIG DELAY IN GETTING THOSE ADS APPROVED DURING PHASE 4 BECAUSE FACEBOOK WAS GOING THROUGH AND CHANGING THEIR POLICIES EVERY DAY IT SEEMED LIKE. IN TERMS OF UPCOMING WORK, WE'RE ACTUALLY GETTING READY TO GO INTO THE FIELD FOR ANOTHER STUDY WITH THE CDC. THEIR DIVISION OF CANCER PREVENTION AND CONTROL. SO IT'S GOING TO BE NICE HERE THAT WE'RE CHANGE OUR POPULATION , WE'RE GOING WITH ADS POSTED ON FACEBOOK AND TWITTER, AND IT'S GOING TO BE ONE OF THREE SURVEY, EITHER FOR SCANNERS SURVIVORS, THOSE AT HIGH RISK FOR CANCER ACCIDENT NOTICES WHO HAVE HAD GENETIC TESTING OR A FAMILY MEMBER HAS BEEN DIAGNOSED, AND THE GENERAL POPULATION. SO IT'S GOING TO BE REALLY INTERESTING IN THAT STUDY TO SEE IF WE'RE AS SUCCESSFUL GOING FROM TEENS TO ADULTS. SO THAT'S ALL I HAD, UNLESS THEY'VE GOT THE VIDEO. DID THEY -- OH, IF HE CAN CLICK -- OH, THERE WE GO. IT JUST DOESN'T HAVE THE VOLUME. OKAY. WELL, WE'LL JUST LEAVE IT AT THAT THEN FOR TIME'S SAKE. BUT THANK YOU. [APPLAUSE] >> THANK YOU SO MUCH, ERIN. SO WE HAVE TIME FOR QUESTIONS AND ANSWERS. SO IF YOU ARE INTERESTED, JUST GO ON UP TO THE MIC. >> HELLO. LET'S SEE IF THIS WORKS. THANK YOU. CLEARLY IT'S THE END OF THE LONG WEERKS I SUPPOSE. HI. HOW ARE YOU FOLKS DOING? SO I'M TRISTAN FITS PAT TRIRKS I WORK IN COMMUNICATIONS FOR THE CANCER SUPPORT COMMUNITY, COUNTRY'S LARGEST PROVIDER FOR SOCIAL AND EMOTIONAL SUPPORT FOR PEOPLE AFFECTED BY CARNLS OF THE I'VE LEARNED AWE LOT OVER THESE PAST COUPLE DAYS AND ONE QUESTION WE GET QUITE FREQUENTLY FROM PATIENTS AND THEIR LOVED ONES ARE MISCONCEPTIONS ABOUT CLINICAL TRIALS, SO WE SEE SOME PEOPLE AFFECTED BY CANCER ASKING US QUESTIONS LIKE IS THERE GOING TO BE A PLACEBO IN A CANCER CLINICAL TRIAL AND THERE'S ALSO A MISCONCEPTION WE FACE WHERE PEOPLE THINK CLINICAL TRIALS ARE ONLY AVAILABLE FOR THOSE WITH ADVANCED DIAGNOSES AND NOT NECESSARILY EARLIER ONES. SO I GUESS MY QUESTION FOR THE WHOLE PANEL I WELCOME EACH OF YOUR INPUT ON THIS QUESTION IS HOW CAN WE BEST USE SOCIAL MEDIA TO ADDRESS SOME OF THOSE MISCONCEPTIONS THAT EXIST? AND I DON'T KNOW WHAT THE RIGHT ANSWER TO THAT IS. I DON'T KNOW IF IT'S LIKE A VIDEO CAMPAIGN OR A PAMPHLET OR SOMETHING LIKE THAT, BUT I WOULD CERTAINLY WELCOME YOUR FEEDBACK. >> I'M JUST GOING TO BRIEFLY MENTION, THERE ARE RESOURCES THAT YOU CAN DIRECT THEM TO, YOU KNOW, THROUGH SOCIAL MEDIA LIKE THAT ARE WELL TESTED WITH AUDIENCES, NCI HAS A LOT ABOUT CLINICAL TRIALS, WHAT IS A CLINICAL TRIAL, WHAT DOES IT INVOLVE, AND I THINK THERE'S WAYS THAT YOU CAN LINK TO THOSE AND PUSH IT OUT AND MAYBE START WITH, YOU KNOW, THE MISCONCEPTION SH DO YOU THINK THAT BLAH, BLAH, BLAH, AND THEN CLICK HERE FOR THE RIGHT ANSWER, SOMETHING OF THAT NATURE. BUT I THINK THE BEST WAY TO DO THAT IN MY OPINION IS TO FIND SOME CATCHY WAY TO LINK TO THE WELL TESTED RESOURCES. >> I WOULD AGREE WITH THAT. I THINK YEAH, IF YOU CAN FIND EVEN JUST CREATING A SIMPLE GRAPHIC OR A REALLY QUICK VIDEO OR SOMETHING OF WHAT THE MISCONCEPTION IS AND THEN LINKING TO THOSE RESOURCES WOULD BE A GOOD WAY TO ADDRESS THAT IN SOCIAL MEDIA. >> I WOULD ALSO ADD THE IMPORTANCE OF MICROTAILORING YOUR CONTENT TO EXACTLY WHAT THE MISCONCEPTIONS ARE AND THE SENTIMENT AROUND THE CLINICAL TRIALS THAT THEY'RE TALKING ABOUT IN TERM OF THE LANGUAGE THAT THEY'RE USING AND THE THINGS ATHEY'RE SAYING MAY BE ALSO ON SOCIAL MEDIA, SO LOOKING AT A SOCIAL MEDIA LISTENING TOOL , FOR EXAMPLE, TO SEE IF THERE ARE KEYWORDS OR MESSAGES THAT YOU CAN IDENTIFY TO DEVELOP AND THEN TEST. I KNOW WE'VE HAD SOME SUCCESS IN THAT AREA ADDRESSING WOMEN WHO ARE PREGNANT AND ADDRESSING MISCONCEPTIONS ABOUT SMOKING AS WELL AS VIDEOTAPING WHILE PREG -- AS WELL AS VAPING WHILE PREGNANT, SO YOU MAY BE ABLE TO LEVERAGE SOMETHING LIKE THAT AS WELL. IS. >> HI, I'M JUDY NEDAM, WITH THE CANADIAN CANCER TRIALS GROUP. I AM HERE IN THE ROLE OF PATIENT ADVOCATE, BUT I ALSO AM GOING TO PUT ON MY PATRICKING HAT BECAUSE I AM RETIRED FROM CORPORATE COMMUNICATIONS AND MARKETING WITH A MAJOR COMMUNICATIONS COMPANY IN CANADA. JESS CARKS I REALLY ENJOYED YOUR PRESENTATION BECAUSE YOU TOUCHED ON IS SOME GOOD -- CAN GOOD MARKETING POTENTIAL PLANNING STEPS THAING CAN'T BE OVERLOOKED , AND YOU WILL TALKED ABOUT HOW IMPORTANT LITTLE TO DETERMINE WHAT IT IS YOU'RE TRYING TO ACHIEVE, WHAT IS YOUR MESSAGE, AND WHO NEEDS TO HEAR IT. SO WHO IS YOUR AUDIENCE? I THINK THAT NEEDS TO BE TAKEN ONE STEP FURTHER, AND YOU NEED TO UNDERSTAND THE PERSONA OF THE AUDIENCE THAT YOU'RE TRYING TO REACH. WHAT ARE THEIR DEMOGRAPHICS? HOW DOES THIS SEGMENT OF PEOPLE THAT YOU'RE TRYING TO REACH COMMUNICATE? SO I THINK IT'S A REALLY IMPORTANT TO UNDERSTAND, AND YOU DID MENTION IS SOCIAL MEDIA THE RIGHT TOOL TO REACH OUT TO THAT PARTICULAR AUDIENCE. SO I THINK IT'S AN EXCITING NEW AREA IN TERMS OF COMMUNICATION TOOLS, WAYS TO REACH OUT TO PEOPLE, BUT I THINK THAT ONE OF THE BIGGEST CHALLENGES WE HAVE WITH THE FAMILY OF SOCIAL MEDIA TOOLS AS A VEHICLE TO GET TO THESE TARGET MARKETS THAT WE WANT TO GET TO IS LACK OF CONTROL OF WHO YOU CAN GET TO. ALL OF THE VEHICLES, INCLUDING FACEBOOK, TWITTER, ET CETERA, ARE DEPENDENT ON PEOPLE FOLLOWING. YOU NEED TO GET FOLLOWERS TO SIGN UP. UNLIKE TRADITIONAL TOOLS OF VOICE, MEDIA, PRINT AND EVEN E-MAIL WHERE YOU CAN CREATE CUSTOMER LISTS AND YOU ARE IN CONTROL OF WHO YOU'RE COMMUNICATING TO. SO I'M INTERESTED IN WHAT YOU'VE ENCOUNTERED IN THIS REGARD AND HOW YOU'VE OVERCOME THAT OBSTACLE BECAUSE I THINK IT'S IMPORTANT FOR US TO CONSIDER AS WE TAKE THIS FORWARD. >> SURE. THANK YOU FOR YOUR COMMENT. I DO AGREE THAT REALLY DIVING INTO THE AUDIENCE RESEARCH AND LOOKING AT -- AND PUGH VAIRCH REALLY GREAT RESOURCE FOR LOOKING AT WHAT PEOPLE ARE DOING ONLINE, THERE ARE A LOT OF OTHER CONSUMER AUDIENCE INSIGHTS THAT YOU ARE GLEAN FROM SCARBOROUGH DATA AND A WHOLE HOST OF OTHER DIFFERENT THINGS, SO I THANK YOU FOR THAT COMMENT. AS FAR AS THE ISSUE OF THAT LACK OF CONTROL, I THINK ON A LOT OF THE PLATFORMS NOW, YES, WE ARE TRYING TO GET PEOPLE TO OUR CHANNELS TO FOLLOW US AND TO GET THAT INFORMATION, BUT THERE'S OTHER WISE WAYS THAT PEOPLE THAT ARE NOT AT ALL CONNECTED TO OUR PAGE ARE SEEING OUR CONTENT, SO DOING FACEBOOK ADVERTISING, WE CAN ADVERTISE TO SOMEONE WHO LOOKS LIKE SOMEONE WHO IS ALREADY FOLLOWING OUR PAGE BUT IS NOT CURRENTLY FOLLOWING OUR PAGE, SO WE CAN DO A LITTLE BIT OF THAT. I THINK YOU ALSO ARE ABLE TO WHEN PEOPLE SHARE OUR CONTENT, THEY ARE SHARING IT WITH THEIR FRIENDS AND FAMILY ON THEIR CHANNEL WHO MAIBT NECESSARILY BE CONNECTED, SO I THINK THAT THAT KIND OF, YOU KNOW, BEING ABLE TO -- THE SH ARE ABILITY OF INFORMATION IN SOCIAL MEDIA REALLY DOES EXPAND THE REACH BEYOND JUST WHAT'S HAPPENING ON OUR INDIVIDUAL PLAT FORNL AND THE PEOPLE THAT ARE FOLLOWING US THERE AND ALSO I THINK THAT CONTROL ISSUE SOMETHING THAT WE GRAPPLED WITH A LOT WHEN WE WERE FIRST STARTING OUT IN SOCIAL MEDIA, WELL, WE DON'T KNOW HOW PEOPLE ARE GOING TO REACT TO THIS, SO IT'S ALSO WE HAVE PUT A LOT OF PROCESS IN PLACE FOR WHAT WE WILL AND WILL NOT ALLOW ON OUR CHANNELS TO HAPPEN IN HE REMEMBERS IT COMMENT MODERATION AND FILTERS FOR PROFANITY AND THINGS LIKE THAT, SO IS WE HAD TO ACCEPT A LITTLE BUILT OF THAT RISK OF LOSING CONTROL OF OUR MESSAGE SOMETIMES, BUT I THINK THAT THE BENEFIT OF BEING THERE FAR OUTWEIGHS THAT LOSS OF CONTROL, AND THE CONVERSATIONS ARE HAPPENING WHETHER WE'RE THERE OR NOT, SO WE REALLY DO NEED TO BE THERE TO PROVIDE THAT SCIENTIFIC, ACCURATE INFORMATION IN THE SPACES. >> I JUST WANT TO WEIGH IN BECAUSE I THINK THAT JOSH AND ERIN'S PRESENTATIONS ALSO EMPHASIZE THE PHASED APPROACH, MAKING SURE YOU CHECK IN AND TO REASSESS HOW THINGS ARE GOING, SO THAT WAY IF IT IS BEING MIS DIRECTED, YOU CAN SORT OF STEER IT RIGHT BACK TO WHERE YOU'RE HOPING TO GO. SO I THINK THAT'S -- >> YEAH, THAT'S A GREAT POINT. THANK YOU. ONE OF THE MOST BENEFICIAL PARTS TO OUR STUDY WAS THE COGNITIVE INTERVIEW PROCESS AND BRINGING KIDS IN SHOWING THEM THE ADS AND SAYING WOULD YOU CLICK ON THIS? LIKE WHAT DO YOU THINK? BECAUSE THERE WERE SO MANY ADS WHERE THE KIDS LOOKED AT IT AND THEY'RE LIKE, RUR KIDDING ME? THEY'RE LIKE GET RID OF THIS ONE , GET RID OF THAT ONE. WHEN WE POSTED THE ADS, WE WERE ALSO WORRIED ABOUT WHAT KIND OF COMMENTS ARE PEOPLE GOING TO PUT ON THESE ADS, THAT THEN ALL THESE OTHER KIDS ARE GOING TO READ AND RUN AWAY FROM AND BE LIKE I'M TOO SCARED, I DON'T WANT TO PARTICIPATE IN THIS. THERE WERE MAYBE A HANDFUL, WHICH I COULD THEN REMOVE, YOU KNOW, IF THEY WERE OFFENSIVE. BUT MORE SO, IT WAS ALMOST LIKE COMMUNITY BUILT UP WITH THE ADS AND PEOPLE WERE BEING SO ENCOURAGING OF ONE ANOTHER SAYING THANK YOU SO MUCH FOR DOING THIS STUDY, WE REALLY APPRECIATE THIS. THIS MAKES ME FEEL MORE COMFORTABLE ABOUT COMING OUT. SO IT WAS REALLY AMAZING THAT IT COMPLETELY WENT THE OPPOSITE WAY OF WHAT WE, YOU KNOW, WORST CASE SCENARIO. BUT THOSE COGNITIVE INTERVIEWS WERE CERTAINLY SOMETHING I HIGHLY RECOMMEND AS GEG THE IN PUT FROM PEOPLE THAT YOU'RE TRYING TO ACTUAL REACH. >> AND I THINK THAT THE COMMUNITY EFFECT THAT YOU JUST TALKED ABOUT AS WELL AS SOME OF THE DISCUSSIONS WE HEARD YESTERDAY ARE IDEAL FOR REACHING THE CORRECT PEOPLE THAT YOU WANT TO GET OUT TO. THANK YOU. >> THANK YOU. LAST QUESTION. >> HI. I'M KARA SMIGLE FROM THE NCI DIVISION OF CANCER PREVENTION. I WARNED HOLLY I WAS GOING TO ASK THIS QUESTION. IF WE CAN'T EVEN GET PEOPLE TO ANSWER QUESTIONS ABOUT WHAT THEY DO IF THEY GOT CANCER IN A CLINICAL TRIAL, HOW ARE WE GOING TO APPROACH PEOPLE WHO WE WOULD LIKE TO ENROLL IN PREVENTION AND DETECTION TRIALS BECAUSE ALL WE ARE IS MAKING THEM THINK ABOUT GETTING CANCER? >> SO I WOULD SAY THAT OUR RESEARCH WASN'T DESIGNED TO ANSWER THAT QUESTION. OUR RESEARCH WAS DESIGNED TO ANSWER THE QUESTION ABOUT A TREATMENT TRIAL. SO I THINK YOU WOULD HAVE TO DO THE SAME PROCESS THAT WE DID BUT FOR PREVENTION TRIALS BECAUSE AGAIN THE WHOLE CONCEPT OF TAILORING TO DIFFERENT AUDIENCES I THINK THAT IT IS A DIFFERENT BALL GAME IN MY OPINION, SO THAT MEANS YOU HAVE TO HAVE A DIFFERENT FIELD, SO I WOULD SAY APPLY THE PROCESS TO THAT RESEARCH QUESTION. >> MY BOSS LIKES TO SAY IT'S VERY HARD TO MAKE A HEALTHY& PERSON BETTER OFF THAN THEY ALREADY ARE. >> THAT IS RIGHT. BUT THANK YOU ALL. EMI, DOCUMENT TO DO A TEN MINUTE BREAK SO WE GET BACK ON SCHEDULE SO IF WE CAN ALL COME BACK HERE AT 11:05, THAT WOULD BE GREAT. THANK YOU SO MUCH. THANK YOU VERY MUCH FOR ALL THE GREAT DISCUSSIONS SO FAR. WE'RE GOING TO GO AHEAD AND CONTINUE ON TO OUR SESSION 6, BUT BEFORE WE DO, I WOULD LIKE TO INVITE RUTH CARLOS AND DIANE DRAGAUD UP FROM NCTN. >> THANKS, EMI, AND FOR THOSE OF UP IN THE AUDIENCE, I'M JUST FAN GIRLING A LITTLE BIT BECAUSE I FINALLY AM IN THE SAME PHYSICAL SPACE AS A LOT OF PEOPLE WHO I HAVE ADMIRED ONLINE. SO THANK YOU FOR THE OPPORTUNITY COULD WE GET IT UP ON THE SCREEN , PLEASE? OF COURSE. CAN YOU HEAR ME NOW? EXCELLENT. SO I WANTED TO TAKE A STEP BACK AND TALK ABOUT THE EVOLUTION OF HOW ECOG AKRON USES TWITTER IN PARTICULAR AND HOW WE LEF REIMAGINE ARE SMOAD WITH THE NCT N. THIS IS AN N OF 1, AN INSTITUTION AND MOW AN INSTITUTION IT THINKS ABOUT USE OF ENGAGEMENT AND THE USE OF SOCIAL MEDIA AS A WAY TO BRING THE PATIENT PERSPECTIVE INTO THE CLINICAL TRIAL REALM. NOT JUST AS SUBJECTS, BUT TRULY AS CO-DEVELOPERS AND CO-CREATORS OF TRIALS. HIS OR CLIL ECOG AND ACRIN WERE TWO SEPARATE ORGANIZATIONS THAT MERGED TO FORM ECOG-ACRIN. ACRIN IS HOWSMSED WITHIN THE AMERICAN COLLEGE OF RAID RADIOLOGY, THIS POINT IS IMPORTANT BECAUSE A LOT OF THE WORK THAT HAS FIRLTD INTO ECOG-A CRIN REPRESENTS SOME OF THE EARLIER WORK THAT WAS DONE WITHIN THE AMERICAN COLLEGE OF RADIOLOGY SO I TEND ON THIF SOCIAL MEDIA AND THE WORK WE TOO IN SOCIAL MEDIA AS AN ECOLOGICAL SYSTEM WHERE IT DOESN'T STAY STATIC WITHIN AN INDIVIDUAL ORGANIZATION OR WITHIN AN INDIVIDUAL GROUP OF PEOPLE BUT RATHER IT CAN INFILTRATE SO TO SPEAK AND IN FACT IN THE VERY BEST WAY VARIOUS ORGANIZATIONS AND HELP SHAPE THOUGHT. ONE OF THE EARLIEST WORKS THAT WE DID WAS WITH THE JOURNAL OF THE AMERICAN COLLEGE OF RADIOLOGY. AT THAT TIME WE IDENTIFIED PATIENTS AND PATIENT ADVOCATES AS CRITICAL PARTNERS AND CRITICAL CONSUMERS OF THE WORK THAT WE PROVIDE AND THAT WAS RADIOLOGY RESEARCH AND HEALTH SERVICES RESEARCH AND POLICY, CLINICAL PRACTICE MANAGEMENT AND LEADERSHIP. SO THESE ARE AREAS WHERE WE THINK PATIENTS WOULD WANT CONTENT BUT WE WEREN'T GETTING CONTENT INTO THEIR HANDS AT THE TIME THAT THEY NEEDED TO MAKE THESE DECISIONS. SO WE STARTED A TWITTER CAMPAIGN BEFORE JANUARY 1, DURING JANUARY 1-RBGS WE STARTED A CONCERTED EFFORT TO REACH OUT INTO OUR PATIENT COMMUNITY AND THAT INCLUDED INVITATIONS TO JOIN OUR TWEET CHATS, POSTING MESSAGES, SPECIFIC TO SOME OF THE CONCERNS THE WAY I IDENTIFIED THAT THE PATIENTS AND PATIENT ADVOCATE COMMUNITY HAD AROUND IMAGING AND AROUND CANCER. CAN PART OF BUILDING COMMUNITY REALLY IS TO ESTABLISH A DIGITAL COMMUNITY OF PRACTICE, AND WE LOOKED AT WHO PARTICIPATED IN OUR TWEET CHATS AND THE RELATIONSHIPS BETWEEN THE PARTICIPANTS AND TWEET CHATS BEFORE THE INTERVENTION, AND THE YELLOW DOTS AND THE BLUE DOTS REPRESENT SPECIFIC TYPES OF INDIVIDUALS, MOSTLY PROFESSIONAL S, A FEW PATIENTS. ON THE SECOND BOX WE ISOLATED PATIENTS AND PATIENT ADVOCATES WHO HAD PARTICIPATED AND YOU CAN SEE THE RELATIONSHIPS BETWEEN THESE INDIVIDUALS AND THE LARGER WHOLE. THE SIZE OF THE DOTS REMIT THE NUMBER OF TWEETS OR THE LEVEL OF ENGAGEMENT. THE LINES BETWEEN THE DOTS REMIT THE COMMUNICATION OR ENGAGEMENT BETWEEN INDIVIDUALS OR BETWEEN ORGANIZATIONS, AND AS YOU CAN SEE, MOST OF THE CONVERSATION HAPPENED BETWEEN SELECT GROUP OF INDIVIDUALS. WHAT WE DID DEMONSTRATE WAS THERE WERE A FEW DOMINANT BUT INTERDEPENDENT SUB COMMUNITIES WITHIN THE CLUSTERS. AFTER THE INTERVENTION YOU NOTICE THAT ON THE LEFT-HAND SIDE THERE ARE MORE COLORS NOW AND WHAT THAT REPRESENTS IS AN INCREASE IN THE DIFFERENT TYPES OF COMMUNITIES THAT PARTICIPATED IN OUR TWEET CHATS. WHEN YOU LOOK ON THE RIGHT-HAND BOX ARE YOU SEE THAT THERE ARE NOW AN INCREASED NUMBER OF INDIVIDUAL PATIENT AND PATIENT ADVOCATES WHO PARTICIPATED IN THE TWEET CHATS. THERE WERE MORE INTERCONNECTIONS BETWEEN EACH OF THESE DOTS, AND THE THICKNESS OF THE CONNECTIONS INCREASED, MEANING INCREASED ENGAGEMENT. WHAT WE'VE DEMONSTRATED THEN WAS THAT THERE WERE CELLED TIES, INCREASED CONNECTIVITY AND PATIENTS ASSUMED A LARGER AND MORE CENTRAL ROLE WITHIN OUR TWEETCHAT ECOLOGY. THERE'S MORE INTEGRATION AND CONNECTION WITH INTEGRATION OF GROUPS THAT WERE INITIALLY PERIPHERAL AND NOW THEY WERE BROUGHT INTO THE CENTER WITH INCREASING TIES TO MORE INDIVIDUALS PARTICIPATING IN THIS CLUSTER. PATIENTS THEMSELVES BECAME CENTRAL HUBS AROUND WHOM OTHER MEMBERS CLUSTERED. SO WHAT THIS TOLD US WAS THAT PATIENTS RESPOND, THEY RE RESPOND TO INVITATIONS, THEY RESPOND TO THE OPPORTUNITY TO BE HEARD IS, AND DHS WHAT ONE JOURNAL HAS DONE TO INCREASE PATIENT PARTICIPATION IN OUR COMMUNITY. SO HOW DOES THAT RELATE TO THE WORK OF AN NCTN AND HOW DOES THAT RELATE TO CLINICAL TRIALS? SO STARTING WITH JACR, WHICH IS A JOURNAL, WE HOST MONTHLY TWEET CHATS TO ENGAGE NEW STAKEHOLDERS INCLUDING PATIENTS AND PATIENT ADVOCATES AND THIS STARTED WITH OUR FIRST TWEETCHAT IN AUGUST -- IN SEPTEMBER OF 2013 ON HEALTHCARE AND SOCIAL MEDIA. IN MAY OF 2014, WE HAD A TWEETCHAT ON CLINICAL TRIALS IN SOCIAL MEDIA HEADED BY MATT THOMPON MTM Ph.D. IN JUNE OF 2014 WE HAD A TWEETCHAT ON LUNG CANCER SCREENING MODERATED BY JAY FLEAMAN DALY AND ELLA KAZ AND THE CONTENT OF THIS CONVERSATION THEN SERVED AS -- THEN WAS INCORPORATED INTO A PROPOSAL FROM EGOG-ACRIN A RESEARCH PACE TO PCORI RESPONDING TO A LETTER OF INTENT FOR LUNG CANCER SCREENING RELIGION SPHRI. THIS TWEELT CHAT ALLOWED US TO IDENTIFY OUTCOMES THAT WERE IMPORTANT TO PATIENTS THAT NEEDED TO BE REPRESENTED IN THE REGISTRY AND HELPED US FRAME HOW WE THOUGHT ABOUT BUILDING THE REGISTRY FROM A PATIENT PERSPECTIVE, AGAIN BRINGING IN THE PATIENT PERSPECTIVE. IS. AFTER THAT, WE STARTED TO BUILD A COMMUNITY OF PATIENT ADD INVOICE CATS THAT WE TENDED TO COMMUNICATE THROUGH MOSTLY ON TWITTER. THE PATIENTS WE IDENTIFIED THROUGH OUR TWEET CHATS HAVE NOW -- NOW SE RVE ON PATIENT ADVISORY BOARDS FOR A SUCCESSFUL EGOG-ACRIN PCORI GRANT APPLICATION ON ENGAGEMENT, DEFINING A ROAD MAP FOR PATIENT ENGAGEMENT AND IMAGING COMPARATIVE EFFECTIVENESS RESEARCH AND IN THE ADVISORY COMMITTEE WE HAVE TWO PATIENT ADVOCATES WHO WE IDENTIFIED IS THROUGH OUR SOCIAL MEDIA IRVEGHTS IT ANDREA BARADMI KITS AND ANDY DELAU AT CANCER GEEK. SO TRANSLATING THIS ENGAGEMENT INTO EGOG-ACRIN WE HOSTED A WORKSHOP AS PART OF THE PCORI GRANT THAT HAD A BROAD GROUP OF PATIENTS AND PATIENT ADVOCATES, AND YOU'LL SEE THEIR TWILTER HAND ELDZ HERE. THESE PATIENTS -- TWITTER HANDLES HERE. THESE PATIENTS CAME TOGETHER TO DEVELOP RECRUITMENT AND RE RETENTION PLANS FOR A TRIAL THAT HAS JUST OPENED ON FINANCIAL TOXICITY AND EARLY STAGE COLORECTAL CANCER. THEY'RE ALSO HELPING DEVELOP A DISSEMINATION STRATEGY FOR ACRIN 6698, THIS IS WHY IT'S PARTICULARLY CREDIT CRITICAL BECAUSE ACRIN 6698 THE RESULTS ARE SAYING WE HAVE BIIMAGING SAYING THIS PARTICULAR NUMBER AND THIS PARTICULAR NUMBER MEANS SOMETHING TO YOU, WE NEED THE PATIENT TO HELP US TRANSLATE THAT INTO A MESSAGE THAT RESONATE WITH PATIENTS SO THAT THEY UNDERSTAND WHAT THE TRUE IMPACT IS OF THIS STUDY THAT MEASURES SOMETHING THAT IS QUITE TECHNICAL. IN TURN THEN BECAUSE THIS IS A VIRTUOUS CYCLE, WHAT THIS DOES& IS IT WILL BE DEVELOPED FOR SUBMISSION BACK INTO THE JOURNAL OF THE AMERICAN COLLEGE OF RADIOLOGY. SO TO END, EGOG-ACRIN IS COMMITTED TO PATIENT ENGAGEMENT, PATIENTS ARE TRULY PARTNERS, SOCIAL MEDIA MAGNIFIES OUR REACH AND IT ALLOWS US TO REACH COMMUNITIES THAT WE MAY NOT NECESSARILY RUN ACROSS, AND THAT TO ME TRULY IS THE POWER OF SOCIAL MEDIA IN CLINICAL TRIALS FROM AN N OF 1 INSTITUTIONAL PERSPECTIVE. THANK YOU. HAD. [APPLAUSE] IS IS IS. >> GOOD MORNING, EVERYONE. CULL HEAR ME OKAY? IS GOOD. I'M DIANE DRAGAUD, DIRECTOR OF COMMUNICATIONS FOR EGOG-ACRIN COMUN CANCER RESEARCH GROUP T THANK YOU, IT'S BEEN SUCH A GREAT LEARNING EXPERIENCE THE LAST COUPLE OF DAYS AND A GREAT OPPORTUNITY TO BE TOGETHER WITH SO MANY PEOPLE WHO WE WORK WITH OVER E-MAIL AND PHONE CONVERSATIONS, SO IT'S BEEN A REALLY WONDERFUL EXPERIENCE. SO I HOPE THAT WE CAN TELL YOU A LITTLE BIT ABOUT WHAT WE'RE DOING HERE IS. EGOG ACRIN HAS A FORMAL COMMUNICATIONS PROGRAM THAT WAS ESTABLISHED AT THE TIME THAT THE TWO GROUPS MERGED, WHICH WAS BACK IN 2012. THE MISSION OF THE PROGRAM IS TO BUILD AND MAINTAIN A PUBLIC PRESENCE FOR THE GROUP AND SPECIFICALLY WE DESIRE TO CONVEY THE DEPTH AND THE BREADTH OF OUR SCIENTIFIC PORTFOLIO AND GENERATE MATERIALS AND CONTENT THAT SHOW THE EXCITEMENT ABOUT THE IMPORTANT SCIENTIFIC PURSUITS THAT THIS GROUP IS UNDERTAKING. THIS IS THE CENTRAL OFFICE FOR ALL OF THE CONDUCT OF THE EXTERNAL COMMUNICATIONS. THESE ARE THE GOALS. WE PROMOTE PROGRESS THROUGH ANNOUNCEMENTS OF NEW TRIAL OPENINGS AND SCIENTIFIC FINDINGS WE CONDUCT MEDIA RELATIONS BOTH PROACTIVELY AND REACTTIVELY, AND WE DO THIS AMONG THE MAINSTREAM MEDIA AS WELL AS TRADE PRESS, WHICH FOR US IS ONCOLOGY TRADES AS WELL AS THE IMAGING AND RADIOLOGY TRADE PRESS BECAUSE WE ARE A GROUP THAT AS RUTH MENTIONED MERGED TWO GROUPS, ONE WAS THERAPEUTIC IN NATURE AND THE OTHER WAS IMAGING AND ORIENTATION, SO WE COVER ALL THAT GROUND. WE DO CREATE PUBLIC MATERIALS TO SUPPORT ACCRUAL TO CERTAIN OF OUR TRIALS THAT ARE DEEMED BY OUR LEADERSHIP AS BEING HIGH PROFILE, AND WE SUPPORT OUR SCIENTIFIC AND RESEARCH SUPPORT COMMITTEE CHAIRS AND THE ASSOCIATED STAFF ON A REGULAR BASIS TO HELP THEM IDENTIFY COMMUNICATIONS NEEDS THAT WE BRING TO THE ATTENTION OF THE EA LEADERSHIP FOR PROCESSING. WE MANAGE AND PROMOTE A MENTORSHIP PROGRAM WHICH IS A KEY ASPECT OF EGOG-ACRIN'S WORK PARTICULARLY AMONG YOUNG INVESTIGATORS IN A VARIETY OF WAYS. WE MAINTAIN EXPEKS UP AND DOWN WEBSITE AND IMMUNE TAKEN A COMMUNICATIONS PLATFORM FOR THE USE AND BENEFIT OF GROUP LEADERS I WANT TO GIVE AWE SHOUT OUT TO OUR SOCIAL MEDIA CHAMP DILL ONS SHOWN HERE ON THE SCREEN, MIKE WAGNER AND RUTH WERE INSTRUMENTAL IN THE BEGINNING IN HELPING US ESTABLISH A TWITTER PRESENCE, WE HAVE MOST OF OUR SCIENTIFIC COMMITTEE CHAIRS HAVE TWITTER HANDLES AND ARE ACTIVE ON TWITTER AT THIS TIME, YOU SEE DR. WOLF, DR. REIMAGINE KUMAR AND DR. RAMDALIN IM UM HERE WHO ARE PROFESSIONAL THE MOST ACTIVE ON TWITTER AT THIS TIME AND OVER ON THE RIGHT-HAND COLUMN THESE ARE TWO STUDY CHAIRS WHO ARE VERY ACTIVE WITH US BOTH IN TERMS OF CURRENT PROMOTIONS ON TWITTER ABOUT THEIR TRIALS, DR. PRESANO WITH A TIMIS STUDY AND DR. JOSEPH SPERANO LEAD AUTHOR WITH THE TAYLOR X STUDY, THEY ARE REALLY HELPING US FIGURE OUT HOW PARTICULARLY WITH TMIS AND I'LL TALK ABOUT THIS A LITTLE LATER, FIGURE OUT HOW WE USE SOCIAL MEDIA FOR A TRIAL THAT IS GOING TO RECRUIT 1,265,000 PARTICIPANTS WHO WILL BE -- 165,000 PARTICIPANTS WHO WILL BE ASKED TO REMAIN IN THE STUDY ARM FOR FIEFER YEARS, SO -- FOR FIVE YEARS, SO RETENTION ARE BUILDING A COMMUNITY OF PARTICIPANTS FOR EXAMPLE AS HAD HAPPENED IN THE PREVIOUS LUNG CANCER SCREENING TRIAL WHICH WAS CONDUCTED BY ACRIN, SO DR. PASANO IS WORKING WITH US CURRENTLY TO ANSWER SOME OF THOSE QUESTIONS. WE ESSENTIALLY HAVE TWITTER, SO WE ARE A GROUP, I WOULD SAY, THAT HAS ITS TOE IN THE WATER IN TERMS OF SOCIAL MEDIA. WE DO NOT HAVE A FACEBOOK ACCOUNT AT THIS TIME BECAUSE WE JUST HAVEN'T HAD THE TIME TO REALLY FIGURE OUT AND FORMALIZE A GOOD SET OF GOALS AND OBJECTIVES FOR FACEBOOK, BUT WE HAVE WITH TWITTER, SO WE USE IT IN A VARIETY OF WAYS, AS YOU SEE HERE ON THE SLIDE, IT DOES HELP US PROMOTE OUR CONTENT AS IT IS CREATED. I MENTIONED THE OPEN TRIALS. WE HAVE A CLINICAL EDUCATION DEPARTMENT AT EGOG-ACRIN AND MANY OF YOU HAVE MET LAUREN GREEN THE DIRECTOR OF THAT PROGRAM WHO IS HERE WITH US TODAY. SO TWITTER HELPS WITH ALL OF THAT, AND IT'S REALLY A CONNECTION, YOU KNOW, FORUM FOR OUR LEADERS, OUR THOUGHT LEADERS TO CONNECT WITH ONE ANOTHER AND OUR MEMBERS TO REACH OUT AND CONNECT ACROSS THE NCTN AND THE NCORPS, AND WE ARE WORKING WITH MARY LOU SMITH WHO IS ALSO HERE TODAY, WHO IS THE CHAIR OF OUR CANCER RESEARCH ADVOCATES COMMITTEE TO CONNECT ON TWITTER WITH ADVOCACY GROUPS. WE DO USE TWITTER TO HIGHLIGHT AND RECOGNIZE MEMBER SITES, PARTICULARLY WHEN WE HAVE TRIALS THAT ARE REACHING THEIR ACCRUAL GOALS ASK WE LIKE TO BE ABLE TO RECOGNIZE -- AND WE LIKE TO BE ABLE TO RECOGNIZE SITES THAT HAVE BEEN PARTICULARLY INVOLVED WITH HIGH ACCRUAL. I'M GOING TO TALK JUST BRIEFLY ABOUT E21-12 WHICH IS A STUDY FOR METASTATIC BREAST CANCER PATIENTS WHO HAVE PROGRESSED AFTER TREATMENT WITH AROMAHASE INHIBITORS, THIS IS A FDA REGISTRATION TRIAL WITH A DRUG CALLED INTINOSTAT. WE HAVE USED E21-12 AS I THINK A MODEL THAT WILL CARRY US FORWARD WITH OTHER TRIALS AS WE THINK ABOUT AN OVERALL COMMUNICATIONS STRATEGY AND WHERE SOCIAL MEDIA FITS IN. WE HAVE BEEN CONDUCTING ONGOING TWITTER CAMPAIGNS SINCE 2014. WE USE THE CONTENT THAT YOU SEE HERE AUTHORED ARTICLES IN ONCOLOGY TRADE PRESS, A PATIENT VIDEO THAT'S CRIB APPROVED, NEWSLETTER FOR SITES AND JUST A FEW DAYS AGO ARMY OF WOMEN LAUNCHED A CAMPAIGN FOR US A RECRUITMENT CAMPAIGN FOR E2112 AND WE'RE VERY, VERY CLOSE TO THE 2600 PATIENT GOAL. WE HAVE LEARNED A LOT WITH THIS PARTICULAR TRIAL THAT AS I SAID IT WAS OUR FIRST COMPREHENSIVE TRIAL-SPECIFIC CAMPAIGN AND IT WILL BE THE MODEL THAT WE WILL BE USING AS WE MOVE FORWARD WITH OTHER STUDIES. THIS IS MY LAST SLIDE. WE ARE AT A CROSSROADS, AND AS I SIT IN THE SESSIONS TODAY AND AS I SAT THROUGH YESTERDAY, THERE WAS SO MUCH TO LEARN. YOU KNOW, THERE ARE A NUMBER OF STRATEGIC QUESTIONS THAT WE IN EGOG-ACRIN WILL HAVE TO GO BACK AND THINK ABOUT AS WE MOVE FORWARD OR HOW WE MOVE FORWARD. YOU KNOW, I MENTIONED THE TMIS STUDY, WHAT DO YOU DO WITH 165,000 PARTICIPANTS WHERE YOU WANT TO MAKE SURE THAT THEY STAY ENGAGED AND REALLY FEEL LIKE THEY'RE PART OF A COMMUNITY AND WE WANT TO MAKE SURE THAT THEY STAY IN THE TRIAL ONCE THEY JOIN AND WHAT OTHER USES FOR SOCIAL MEDIA DO WE HAVE FOR TMIS, THAT'S A CONVERSATION THAT WILL BE TAKING PLACE WITH OUR COLLEAGUES AT THE NC I THREW A PUBLIC RELATIONS WORKING GROUP THAT WE'VE ESTABLISHED FOR THIS TRIAL. WE HAVE A NEED TO REALLY FIGURE OUT HOW TO STREAMLINE THE DEVELOPMENT OF PLAIN LANGUAGE CONTENT, YOU KNOW, NONE OF OUR THRIELZ COME WITH -- NONE OF OUR TRIALS COME WITH PLAIN LANGUAGE CONTENT, IT HAS TO BE CREATED, AND OUR PATIENT ADVOCATE GROUP THROUGH MARY LOU TELL US ALL THE TIME WE NEED BETTER PLAIN LANGUAGE CONTENT AND WE NEED SOME BETTER GUIDANCE ON HOW TO UNDERSTAND WHAT THE IRB APPROVAL REQUIREMENTS ARE AROUND THAT IF WE'RE GOING TO BE USING SOCIAL MEDIA MORE OFTEN. WE WANT TO BE ABLE TO FIGURE OUT HOW TO LEVERAGE SOCIAL MEDIA TO ENGAGE IN CONVERSATIONS WITH ADVOCACY ORGANIZATIONS AND PATIENT GROUPS NOT SO MUCH JUST PUTTING OUT THE MATERIAL, BUT HOW DO WE ENGAGE IN CONVERSATIONS. THAT'S AN AREA OF SOCIAL MEDIA THAT WE HAVE NOT DELVED INTO YET BUT WE SEE THAT IT'S COMING. AND THEN LASTLY, LAST IS SOCIAL MEDIA AN EFFECTIVE TOOL TO HELP OUR NCORP SITES REACH OUT TO ADVOCACY GROUPS IN THEIR COMMUNITIES? THIS IS A DISCUSSION THAT'S GOING ON IN OUR CANCER RESEARCH ADVOCACY COMMITTEE THAT WILL PLAY INTO THIS WHOLE OVERARCHING SOCIAL MEDIA FUTURE THAT WE HAVE AT EGOG-ACRIN. THANK YOU. [APPLAUSE] >> GOOD MORNING, EVERYONE, MY NAME IS DAN WOODS, I'M THE OPERATIONS MANAGER FOR THE CHILDREN'S ONCOLOGY GROUP FOUNDATION. I WORK AS PART OF THE COG GROUP CHAIR'S OFFICE, WHICH IS BASED OUT OF CHILDREN'S HOSPITAL PHILADELPHIA. FIRST AND FOREMOST, I WANT TO THANK THE ORGANIZERS OF THE EVENT TODAY AND YESTERDAY. IT'S BEEN A VERY INFORMATIVE PROCESS SO FAR, AND I ALSO WANT TO THANK THE OTHER SPEAKERS AND PANEL MEMBERS. AGAIN, AS MANUFACTURE YOU MAY KNOW, COG HISTORICALLY HAS NOT HAD A VERY SIGNIFICANT SOCIAL MEDIA PRESENCE. FOR EXAMPLE, WE ONLY BEGAN USING TWITTER JUST WITHIN THE PAST SIX WEEKS OR SO. WE HAVE BEEN UTILIZING OTHER FORMS OF SOCIAL MEDIA FOR MORE TARGETED PURPOSES. IT DOESN'T QUITE COVER THE SAME SCOPE THAT WE INTEND TO USE TWITTER FOR, BUT REGARDLESS, I THINK IT'S FAIR TO SAY THAT WE'RE STILL FAIRLY NEW TO THE WORLD OF SOCIAL MEDIA AND I SHOULD MENTION THAT THIS WORKSHOP HAS BEEN IMMENSELY INFORMATIVE SO FAR. I'M CONFIDENT THAT -- I'LL JUST KEEP MOVING. I'M VERY CONFIDENT THAT A LOT OF THIS INFORMATION THAT WE'RE LEARNING HERE THIS WEEK WILL REALLY HEP C OG EFFECTIVELY LEVERAGE THE USTLESZ OF SOME OTHER SOCIAL MEDIA PLATFORMS THAT WE HAVEN'T REALLY TAKEN A GOOD LOOK AT SO FAR AND MY HOPE IS THAT IN THE VERY NEAR FUTURE THAT COG WOULD BE A LARGER PLAYER ESPECIALLY WITHIN THE COOPERATIVE GROUPS TO EFFECTIVELY ADVANCE THE USE OF SOCIAL MEDIA WITHIN THE CANCER RESEARCH COMMUNITY SPECIFICALLY FOR CLINICAL TRIAL RECRUITMENT WHERE POSSIBLE. WITH THAT SAID, I'LL PROVIDE A VERY BRIEF SUMMARY OF WHAT SOCIAL MEDIA TOOLS WE DO USE RIGHT NOW. FOR STARTERS, WE HAVE A FACEBOOK PAGE WHICH IS SET UP SPECIFICALLY FOR THE COG FOUNDATION. THIS IS USED PRIMARILY AS A CAN PLATFORM TO HIGHLIGHT OUR PHILANTHROPIC PARTNERS AND FOR THE EVENTS THEY ORGANIZE ON OUR BEHALF. WE'LL OCCASIONALLY HIGHLIGHT GENERAL NEWS REGARDING SIGNIFICANT ADVANCES WITHIN CHILDHOOD CANCER RESEARCH AND OTHER VARIOUS MILESTONES, HOWEVER, WE VERY RARELY USE INTERNALLY GENERATED ORIGINAL CONTENT ON FACEBOOK. PART OF THE REASONING BEHIND THIS APPROACH IS THAT THE FOUNDATION IS ITS OWN SOMEWHAT COMPARTMENTALIZED ARM'S LENGTH ENTITY WITHIN THE COG AND WE PREFER TO TAKE A MORE PASSIVE APPROACH IN ORDER TO KEEP THE SPOTLIGHT ON OUR EXTERNAL PARTNERS WHO FOR THE MOST PART DO ALL THE HEAVY LIFTING WITH PHILANTHROPIC SUPPORT ON OUR BEHALF. WE ALSO USE LINKEDIN MUCH LIKE ANY OTHER ORGANIZATION PRIMARILY JUST FOR RECRUITMENT EFFORTS, BUT ALSO TO SOME EXTENT TO RAISE GENERAL AWARENESS OF COG'S MISSION AND RESEARCH FINDINGS WITHIN VARIOUS PROFESSIONAL NETWORKS. OUR RECENTLY LAUNCHED TWITTER PROFILE, WHICH IT'S@COGORG, WHICH I'M SURE SOME OF YOU HAVE SEEN RECENTLY, WAS JUST LAUNCHED IN EARLY MAY, THIS IS THE PLATFORM THAING WILL LIKELY BE THE -- THAT I THINK WILL LIKELY BE THE FLAG BEARER WITH RESPECT TO OUR SOCIAL MEDIA EFFORTS IN AT LEAST THE NEAR TERM FUTURE. PERHAPS THE PRIMARY REASON OF OUR -- THE PRIMARY REASON BEHIND OUR LIMITED SOCIAL MEDIA PRESENCE TO DATE IS THAT GENERALLY SPEAKING COG DOES NOT EXPERIENCE VERY SIGNIFICANT ACCRUAL CHALLENGES K WITHIN A PORTFOLIO OF APPROXIMATELY OF -- OF APPROXIMATELY 60 ACTIVE THERAPEUTIC DID PROTOCOLS, ACCRUAL TOTALSES ARE VERY OFTEN MET AND EXCEEDED. AS A RESULT OF THAT COG HASN'T DEEMED SOCIAL MEDIA AT THIS POINT IN TIME TO BE A MISSION CRITICAL ELEMENT OF OUR COMMUNICATION STWRAT JID AND WE'VE RELIED ALMOST EXCLUSIVELY ON HUMAN CAPITAL, SO IN OTHER WORDS, OUR INDIVIDUAL MEMBERS AND MEMBER INSTITUTIONS WHO DRIVE AWARENESS OF THE COG, WHAT IT IS, WHAT IS IT DOES AND WHAT CLINICAL TRIALS ARE AVAILABLE. WE DO HAVE A NUMBER OF RESOURCES THAT DO LIVE ON OUR WEBSITE, SUCH AS THE COG FAMILY HANDBOOK RS OUR RETURN OF RESULTS PORTAL, OUR SUPPORTIVE CARE IMIED LINES, LONG-TERM FOLLOW-UP GUIDELINES, SPHEAM PROTOCOL SUMMARIES -- FAMILY PROALT COL SUMMARIES, THAT WE SEE AS USEFUL TOOLS THAT COULD BE DEPLOYED VIA SOCIAL MEDIA. OFTENTIMES COG MEMBERS WILL POINT FAMILIES TOWARDS THESE RESOURCES WHERE THEY CURRENTLY RESIDE, CHMTION ON THE COG PUBLIC WEBSITE, THROUGH THE USE OF SOCIAL MEDIA OUR HOPE IS TO VERY SOON DEPLOY THESE RESOURCES WE YOBD -- BEYOND JUST THE WEBSITE AND REDUCE THE NUMBER OF STEPS INVOLVED IN THE LEARNING PROCESS FOR FAMILIES OF NEWLY DIAGNOSED CHILDREN. SO TO CONCLUDE, WE DON'T YET HAVE ENOUGH DATA AND MORE IMPORTANTLY SUFFICIENT EXPERIENCE USING SOCIAL MEDIA TO INFORM US ON HOW EFFECTIVE THIS KIND OF OUTREACH WOULD BE. HOWEVER, I'M SURE AS MANY PEOPLE HERE WOULD AGREE, THAT COMMUNITIES AND FAMILIES AFFECT ED BY CHILDHOOD CANCER ARE AMONG SOME OF THE MOST DRIVEN AND ENTHUSIASTIC ADVOCATES IN THIS REALM, AND MANY OF THEM HAVE BEEN USING SOCIAL MEDIA FOR QUITE SOME TIME VERY EFFECTIVELY THEIR DESIRE TO WORK WITH ORGANIZATIONS LIKE COG TO DRIVE AWARENESS AND EDUCATION ABOUT CLINICAL TRIALS COUPLED WITH WHAT WE'VE LEARNED HERE IN WEEK AND WHAT I THINK WE CAN LEARN IN THE FUTURE WORKING WITH THE OTHER COOPERATIVE GROUPS AND KIND OF WATCHING AND LEARNING I THINK WILL BE A GREAT RECIPE FOR SUCCESS. SO THANK YOU AGAIN, AND WE LOOK FORWARD TO THE NEXT STEPS IN OUR SOCIAL MEDIA EVOLUTION. THANK YOU. [APPLAUSE] >> I APOLOGIZE FOR THE TECHNICAL DIFFICULTIES. SO WE'RE GOING TO MOVE ON SO SESSION 6, FUTURE CONSIDERATIONS , AND I WOULD LIKE TOIN VIET CORRIE PAINTER TO JOIN -- LIKE T O INVITE CORRIE PAINTER TO JOIN US. SHE COMES TO US FROM CAN RH FROM THE BROAD INSTITUTE OF MIT AND HARVARD. I ALSOMENT TO MENTION ELIZABETH BUCHANAN, WHO WILL BE UP ON THE IJ STA JOINING HERE, ENDOWED CHAIR IN ETHICS AND DIRECTOR OF THE CENTER FOR APPLIED ETHICS AT THE UNIVERSITY OF WISES -- AT THE UNIVERSITY OF WISCONSIN-STOUT. >> Corrie Painter: HELLO, EVERYBODY, I'M GOING TO STEP ASIDE AND LET ELIZABETH COME ON UP AND INTRODUCE THE PANEL AND IF WE COULD HAVE THE REST OF THE PANELISTS COME ON UP AND JOIN US ON STAGE, WE CAN GET STARTED. THANKS. >> Elizabeth Buchanan: OKAY. GOOD MORNING. GOOD AFTERNOON, ALMOST. IT'S MILL PLESH YOU'RE AND PRIVILEGE TO BE ABLE TO INTRODUCE THIS PANEL. WE HAD A LITTLE BIT OF BACK AND FORTH AND SHIFTING, AND IF YOU RECALL, I DID SPEAK YESTERDAY, SO I WON'T BE ACTUALLY SPEAKING ON THIS PANEL, BUT JUST HAVING THE PLEASURE OF INTRODUCING MY COLLEAGUES. I WANT TO FIRST SAY A HUGE THANK YOU TO THE ORGANIZERS OF THIS EVENT. I THINK AS I REFLECT ON THE LAST DAY AND A HALF, SOME OF THE WORDS THAT HAVE COME TO MY MIND HAVE BEEN INFORMATIONAL, INSPIRATIONAL, MOTIVATING, JUST SO MANY THINGS HAVE COME OUT OF THESE CONVERSATIONS. I WOULD LIKE TO THANK ALL OF THE SPEAKERS FOR PROVIDING SUCH A RANGE OF TOPICS. EVERYTHING FROM VERY EMOTIONAL TO VERY PRACTICAL TO VERY STRATEGIC. SO THANK YOU TO ALL. AND WITH THAT, I WOULD LIKE TO INTRODUCE CORRIE PAINTER. CORRIE IS THE ASSOCIATE DIRECTOR OF OPERATIONS AND SCIENTIFIC OUT REACH AT THE BROAD INSTITUTE OF MIT AND HARVARD. A TRAINED CANCER RESEARCHER WITH A PH.D. IN BIOCHEMISTRY, CORRIE PARTNERS WITH ADVOCACY GROUPS AND ENGAGES PATIENTS WITH METASTATIC BREAST CANCER, METASTATIC PROSTATE CANCER AND ANGIOSARCOMA THROUGH SOCIAL MEDIA IN ORDER TO CARRY OUTPATIENT PARTNERED GENOMIC STUDIES CONDUCTED WE BROAD INSTITUTE WHERE PATIENTS CAN CONSENT ONLINE TO DONATE THEIR STORED TUMOR SAMPLES, SALIVA, BLOOD, MEDICAL RECORDS AND THEIR VOICE IN ORDER TO DIRECTLY ACCELERATE THE PACE OF DELIVERY. CORRIE? >> Corrie Painter: HOW IS EVERYBODY DOING? GOOD? YES? CAN I HAVE A SHOW OF HANDS IF YOU ARE STILL AWAKE AND HAPPY TO BE HERE? YES. HI, EVERYBODY. [LAUGHTER] THIS HAS BEEN A REMARKABLE WORKSHOP. IT IS SO GREAT TO SEE THE NC I TAKE SUCH A DEEP INTEREST IN SOCIAL MEDIA. FOR MANUFACTURE US ON THE PATIENT SIDE, THIS -- FOR MANY OF US ON THE PATIENT SIDE, THIS HAS BEEN A PLACE WHERE AS JANET FREEMAN DALY HAD SO ELOQUENTLY PUT YESTERDAY, A PLACE WHERE WE FIND HOPE, WHERE WE ABSOLUTELY MUST GO IN ORDER TO FIND RESOURCES AND TO SEE PEOPLE ON THE OTHER SIDE OF THE BENCH AND OF THE BEDSIDE COMING TO MEET US HALFWAY IS REALLY ENCOURAGING, SO THANK ALL OF YOU FOR BEING HERE AND FOR THE NCI FOR HOSTING THIS. THE WORK THAT I'M GOING TO TALK ABOUT TODAY IS FOCUSED ON TRANSLATIONAL RESEARCH, BUT MY HOPE IS THAT WE CAN TAKE LESSONS LEARNED HERE AND APPLY IT TO THE FUTURE OF CLINICAL TRIALS. IN PARTICULAR RS I'M GOING GIVE AWAY AS A SPOILER ALERT MY LAST SLIDE, WHICH IS REALLY A SUMMARY OF KIND OF EVERYTHING WE'VE ALREADY HEARD SO MANY TIMES HERE TODAY. BE AUTHENTIC, BE GENUINE, BE HUMAN, AND LISTEN. I THINK THOSE ARE THE MAIN TAKE- AWAYS AS WE THINK ABOUT THE FUTURE OF CLINICAL TRIALS. SO IF YOU THINK ABOUT BASIC TRANSLATIONAL RESEARCH IN THE SPACE OF CANCER, YOU KNOW, WE'RE IN THE ERA OF PRECISION MEDICINE , BUT WE'RE NOT QUITE THERE, RIGHT? WE DON'T HAVE THERAPIES THAT ARE GOING TO HAVE DURABLE, THROW PEOPLE INTO DURABLE REMISSIONS, AND IN ORDER TO GET THERE, WE HAVE SOME WORK TO DO. SO OUR ULTIMATE GOAL IN THE WORK WE'RE DOING AT THE BROAD INSTITUTE IS TO UNDERSTAND WHAT DRIVES CANCER SO THAT WE CAN EVENTUALLY INTERPRET EVERY CANCER PATIENT'S GEE NOARNLINGS IDENTIFY OPTIMAL TREATMENTS AND ANTICIPATE AND PREEMPT RESISTANCE BEFORE IT ARISES. AND LIKE I SAID, THERE'S BEEN A LOT OF PROGRESS, BUT WE STILL HAVE SO MUCH TO DO. WHAT WILL IT TAKE TO GET THERE? IN OUR MINDS, IT WILL TAKE DETAILED MOLECULAR AND GENOMIC CHARACTERIZATION OF THOUSANDS OF TUMOR AND GERMLINE SAMPLES, AND THE KICKER HERE AND THE THING THAT'S UNDERSCORED IS THAT WE NEED TO PRODUCE THIS IN COMBINATION WITH CLINICAL, PATHOLOGICAL AND RADIOLOGIC DATA WE NEED THE FULL SPECTRUM OF EXPERIENCES THAT A CANCER PATIENT GOES THROUGH, BOTH THEIR DATA, THEIR VOICE AND EVERYTHING IN THEIR MEDICAL RECORD. AND THERE'S CHALLENGES TO STUDY ING PATIENT TUMOR SAMPLES. YOU KNOW, RIGHT NOW WE HAVE VERY LOW ACCRUAL, IF YOU LOOK AT THE ENTIRE SPECTRUM OF CANCER PATIENTING ONLY A HANDFUL OF THEM ARE ACTUALLY IN CLINICAL TRIALS WHERE WE GET MOST OF THE TISSUES THAT GO TOWARD THIS TYPE OF RESEARCH. ONLY ABOUT 5 PERCENT OF U.S. CANCER PATIENTS ARE ENROLLED IN CLINICAL TRIALS AT ANY GIVEN TIME. 85 PERCENT OF CANCER PATIENTS ARE TREATED IN THE COMMUNITY SETTING. SO IF YOU REALLY THINK ABOUT IT, MOST TUMOR SAMPLES HAVEN'T BEEN READILY AVAILABLE FOR STUDY. MOST TUMOR SAMPLES ARE SITTING ON THE PALTOLOGY SHELVES OF VARIOUS OFFICES ALL OVER, SCATTERED ALL OVER THIS COUNTRY FAR AWAY FROM ACADEMIC INSTITUTIONS WHERE RESEARCH OCCURS. BUT AS WE ALL KNOW HERE, I DON'T HAVE TO SAY THIS, BUT I WILL ANYWAY BECAUSE ILT PART OF MY SLIDE -- IT'S PART OF MY SLIDE, WE LIVE IF AN ERA OF TECHNOLOGY IN SOCIAL MEDIA, WE LIVE IN AN ERA WHERE CULTURAL CHANGES HAVE PROVIDED US AVENUES WHERE WE CAN FIND EACH OTHER AND WE CAN TALK ABOUT OUR EXPERIENCES, AND WE AS RESEARCH SCIENTISTS CAN LEVERAGE THAT. WE CAN WORK DIRECTLY WITH PATIENTS WHO HAVE ALREADY FOUND EACH OTHER AND WE JUST HAVE TO FIND THEM AND THEN WE JUST HAVE TO ASK THEM TO HELP. OUR OBJECTIVE WITH OUR STUDIES IS TO GENERATE A PUBLICLY AVAILABLE DATABASE OF CLINICAL GENOMIC MOLECULAR AND PATIENT REPORTED DATA IN CANCER TO ACCELERATE DISCOVERIES AND THE DEVELOPMENT OF NEW TREATMENT STRATEGIES. WE BEGAN THIS WORK BACK IN 2012 DAIRVE OR 2015, SORRY, MAYBE THE IDEA HAD BEEN KICKING AROUND SINCE 2012. THIS IS THE BRAIN CHILD OF THE LEADERSHIP AT THE BROAD INSTITUTE ALONG WITH DR. NIKILI WAGLI DPLRKS AT FARBE R AND A GENOMICIST AT THE BROAD INSTITUTE. THEY HAD AN IDEA, WANTED TO BUILD A STUDIED THAT COULD GO BEYOND THE BRICK AND MORTAR INSTITUTES, DO THIS IN THE SPACE OF METASTATIC BREAST CANCER, FOR A VA IT RADIO OF REASONS. THERE IS A HUGE NEED. THERE ARE ACTIVATED PATIENTS. THERE'S A NETWORK OF WONDERFUL ALD VIDEO CATS, ONE OF WHICH IS RIGHT HERE IN THE ROOM WITH ME. THANK YOU, GINNY. THERE ARE A NUMBER OF REASONS WHY THIS PARTICULAR CANCER WAS CHOSEN AS THE FLAGSHIP PROJECTOR FOR WHICH WE WOULD TEST THIS THEORY THAT YOU COULD ENGAGE PATIENTS, ENGAGE THEM DEEPLY AND BUILD A PROJECT IN LOCK STEP WITH THEIR COMMUNITY. THEY HIRED ME, ANOTHER SPOILER ALERTED, THEY HIRED ME BECAUSE I'M A SCIENTIST AND ALSO SURVIVING CANCER, NOT MET STALT I CAN BRERS CARNTION I'LL TELL YOU WHICH ONE IN A BIT, BUT THEY WANTED SOMEBODY WHO UNDERSTOOD WHAT IT WAS LIKE TO WALK IN THE HANDS OF A PATIENT, SOMEBODY WHO UNDERSTANDS WHAT IT'S LIKE TO BE RECOVERING FROM SURGERY AND ON CHEMOTHERAPY PILL AND WHAT IT WOULD BE LIKE TO JOIN A RESEARCH STUDY AT THAT POINT AND ALSO SOMEBODY WHO COULD THEN THINK ABOUT THE DATA ON THE BACK END AND HOW IT WOULD BE USED AS A SCIENTIST. SO I CAME AND HELPED LAUNCH THE METASTATIC BREAST CANCER PROJECT WHICH WE BUILT WITH SEVERAL PATIENTS FROM THE START TO THE FINISH TO THE ONGOING CONTINUOUS ENGAGEMENT THAT WE HAVE, EVERY WORD ON THE WIERKTS EVERY PICTURE WAS NOT JUST CHOSEN WITH PATIENT TION BUT IT'S ITERATED ON CONSTANTLY, SO THE WORDS, PICTURES, EVERYTHING CHANGES WITH CONSTANT FEEDBACK FROM THE COMMUNITY. WHEN WE LAUNCHED, WE HAD NO IDEA IF TEN PEOPLE WERE GOING TO JOIN FOR IF A THOUSAND PEOPLE WERE GOING TO JOIN, BUT SINCE LAUNCH, WE'VE HAD OVER 4,500 WOMEN AND MEN, BECAUSE MEN DO GET BREAST CANCERRING SIGN UP FOR THE METASTATIC BREAST CANCER PROJECT AND OFFER TO CONTRIBUTE THEIR EXPERIENCES, THEIR TISSUE, THEIR VOICE IN ORDER TO ACCELERATE THE PIECE OF RESEARCH. THIS GRAPH HERE REPRESENTS THE CUMULATIVE ENROLLMENT IN BLUL OVER TIME AND WHAT YOU CAN SEE IS THAT THERE'S AIRPLANE STEADY RISE BUT THERE'S ALSO STOCASTIC RISES IN OUR ENROLLMENT GRAPH HERE. WE HAVE TRACE EACH ONE OF THESE TBOOK A VERY DISCREET MOMENT IN TIME, OFTENTIMES IT'S BECAUSE AN AMPLIFIER IN THE COMMUNITY IN FACEBOOK OR TWITTER TOOK IT UPON THEMSELVES, THEY FOUND OUT ABOUT THE PROJECT FOR THE FIRST TIME, THEY WERE INSPIRED, AND THEY SHARED THE URL AND SAID PLEASE JOIN ME. IF YOU HAVE METASTATIC BREAST CANCER TION PLEASE JOIN ME. OR THEY HAPPENED BECAUSE WE GET ALL OF OUR ADVOCACY GROUPS TOGETHER AND WE ASKED THEM TO HELP US SPREAD THE WORD SO THAT NEW PEOPLE CAN HEAR ABOUT THE PROJECT AND THEY'LL SAY PLEASE JOIN THIS PROJECT. IN FACT, IF YOU ALL WANT TO SEE US UPDATE THIS GRAPH, WE COULD PUT THE NCI SOCIAL MEDIA CROSSROADS IF EVERYBODY GETS THEIR PHONE OUT RIGHT NOW AND THEY JUST SHARE THE URL, MBC PROJECT.ORG, WHO KNOWS WHO IN YOUR SOCIAL CIRCLES MAY SEE THIS PROJECT AND DECIDE TO JOIN AS A RESULT. SO I WON'T BE OFFENDED IF YOU TAKE YOUR PHONES OUT AND GO AHEAD AND TWEET AND/OR FACEBOOK POST THE URL. AS A RESULT OF THIS ENROLLMENT, WE HAVE BEEN ABLE TO HAVE THE FOLLOWING NUMBERS. WE'VE HAD OVER 2400 PEOPLE THAT HAVE JOINED AND PROVIDED SURVEY RESULTS TO US, ALSO CONSENT TO THE FULL STUDY. WE HAVE ALREADY RECEIVED BACK IN HOUSE 1600 SALIVA KITS FOR GERMLINE ANALYSIS. WE HAVE MANY HUNDREDS OF MEDICAL RECORDS, HUNDREDS OF TUMOR AND NORMAL MATCHED SPECIMENS. WE HAVE OVER 175 BLOOD SAMPLES FOR ULTRALOW PASS SEQUENCING THAT WE ARE USING TO DETERMINE WHETHER OR NOT WE CAN DO THE SAME DETAILED DEEP ANALYSIS WE CAN DO FROM TISSUE SAMPLES BUT GET A CURRENT SNAPSHOT OF THE PERSON'S CANCER GENOME. PATIENTS OFTENTIMES FIND ORGANIC WAYS TO SPREAD THE MESSAGE, AND THIS IS AN EXAMPLE OF JUST THAT. THESE ARE PATIENTS FROM THE METASTATIC BREAST CANCER PROJECT WHO UPON RECEIVING THEIR SALIVA KIT IN THE MAIL DECIDE TO DO TAKE A SELF-IF I HAD WITH IT AND POSTS IT TO SOCIAL MEDIA TO SHOAL THEIR PARTICIPATION, TO SHOW THAT THEY'RE PART OF SOMETHING, TO SHOAL THAT THEY HAVE SOME CONTROL OVER A -- SHOW THAT THEY HAVE SOME CONTROL OVER A SITUATION THAT IS OFTENTIMES COMPLETELY OUT OF CONTROL. I WON'T READ ALL THE TESTIMONIALS, JUST THE FIRST: I WANT TO LIVE AND WATCH MY CHILDREN GLOARK BUT IF I CAN'T, THEN I WANT TO LEAVE A LEGACY AND A CURE. A LOT OF PEOPLE HAVE TOLD US THIS THEME. THEY WANT TO PARTICIPATE IN THIS RESEARCH NOT NECESSARILY FOR THEM BUT BECAUSE THEY HAVE FRIENDS AND CHILDREN AND THEY'RE SCARED THAT THOSE PEOPLE WILL HAVE CANCER AND THEY DON'T WANT THEM TO EXPERIENCE WHAT THEY'RE EXPERIENCING. THEY DON'T WANT THEM TO WALK THROUGH THEIR SHOES, AND IF THEY CAN TAKE PART IN SOMETHING THAT WILL HELP THEM, THEY'RE GOING TO DO EVERYTHING THEY CAN. AS PART OF OUR MISSION, WE WANT TO TAKE ALL OF THIS DATA AND DE IDENTIFY IT AND SHARE IT IN THE PUBLIC DOMAIN. WE WANT TO MAKE SURE THAT IT'S NOT JUST SILOED FOR OUR RESEARCH BENEFITS BUT THAT IT'S OUT IN THE COMMUNITY FOR ALL LABS TO PUBLISH ON. THAT IS OUR NOTION OF HOW TO ACCELERATE THE PIECE -- ACCELERATE THE PACE OF DISCOVERY WE DON'T WANT TO GENERATE DATA AND TAKE A LOOK WITH OUR OWN SNAPSHOT AND OUR OWN LENS. WE WANT EVERYBODY TO BE ABLE TO USE THIS DATA AND TAKE IT, TO ADD IT TO THEIR DATA IN ORDER TO MAKE MORE DISCOVERIES. SO WE DID OUR FIRST DATA DEPOSIT IN OCTOBER OF 2017 AND WE DOFTD 10 -- DEPOSITED 103 CLINICALLY ANNOTATED SAMPLES, WE JUST RE: LEASED OUR SECOND BATCH OF DATA, NOW THERE'S 150 SAMPLES OUT IN THE PORTAL THAT YOU CAN SEE, YOU CAN ACCESS THAT DIRECTLY FROM OUR WIEBL AS WELL. THEN THE QUESTION CAME, CAN WE DO THIS IN OTHER CANCERS? AS I SAID BEFORE, I'M SURVIVING CANCER. I'M SURVIVING AN EXCEEDINGLY RARE CANCER CALLED ANGER YOAL SARCOMA THAT ONLY GETS ABOUT 300 PEOPLE PER YEAR IN THE UNITED STATES. SO WHAT BETTER PLACE TO SHOW THE POWER OF SOCIAL MEDIA WHEN -- ANGER YOAM SARCOMA -- ANGIO SARCOMA, WHEN YOU HAVE SOMETHING EXCEEDINGLY RARE, WHERE IT'S SO RARE THAT 300 PATIENTS WILL WALK INTO A CENTER FOR A LARGE SCALE STUDY. WE BUILT THIS IN LOCK STEP WITH MY EXPHUNLT AND WE HAVE TO DATE 3125 PEOPLE ENROLL, WE'VE BEEN OPEN FOR JUST OVER A YEAR AND AS I JUST SAID 300 PEOPLE A YEAR GET THIS AND MOST PEOPLE PASS AWAY WITHIN THE FIRST YER OR TWO , SO WE FEEL LIKE THIS IS A REMARKABLE SUCCESSES IN TERMS OF PROOF OF CONCEPT THAT YOU CAN INDEED REACH PEOPLE THAT WOULD BE INTRACTABLE THROUGH TRADITIONAL METHODS. IT'S ALSO SHOWING THE ACCELERATION OF RESEARCH. I WON'T GO THROUGH THIS WHOLE SLIDE BECAUSE I'M SHORT ON TIME, BUT SUFFICE IT TO SAY WE HAD IRB APPROVAL IN JANUARY AND HAD SPECIMENS BACK IN HOUSE BY APRIL AND WITHIN A YEAR DID OUR FIRST DATA RELEASE. WE ALSO HAVE RECENTLY LAUNCHED THIS SIMILAR CONCEPT IN THE SPACE OF METASTATIC PROSTATE CANCER. AS YOU CAN SEE HERE ON THIS COMBINED MAP, THIS JUST BASICALLY SHOWS WHERE PEOPLE ARE PARTICIPATING FROM. THEY'RE NOT FROM MAJOR ACADEMIC MEDICAL CENTERS. THEY'RE FROM ALL OVER THE COUNTRY. SO THE TAKE-HOME, AGAIN THIS IS WHAT I SAID AT THE VERY BEGINNING BUT I'LL JUST KIND OF UNDERSCORE IT HERE ACCIDENT GO TO THE PATIENTS. PATIENTS FIND EACH OTHER. WE FIND EACH OTHER, LIKE ON THE DAY OF DIAGNOSIS, WE ALREADY HAVE LIKE TEN NEW FRIENDS THAT HAVE BEEN THROUGH WHAT WE'VE BEEN THROUGH, AND ASKING US TO JOIN ANOTHER PLATFORM IS SOMETIMES A BIT OF A HURDLE, ESPECIALLY AT THE ON ET OF A VERY DIFFICULT DIAGNOSIS. TAP INTO EXISTING COMMUNITIES. WORK WITH PATIENTS AND ADD VIDEO CALTS AND ADVOCACY GROUPS -- AND ADVOCATES AND ADVOCACY GROUPS, START THINKING ABOUT DIVERSITY FROM THE START, IN TERMS OF RACE , ETHNICITY AND AGE. WORK WITH PATIENTS BEFORE, DURING AND AFTER THE STUDY. I THINK WE'VE HEARD A LOT ABOUT THE USE OF SOCIAL MEDIA FOR ACCRUAL BUT IT GOES WAY BEYOND THAT. AS SUSANNAH FOX SO HE WILL QUANT LY SAID THE FIRST DAY, THEY WERE WASHED POUT OF A STUDY AND THEN THEY NEVER HEARD ANYTHING ELSE. WE MAKE IT A POINT TO TRY TO KEEP EVERYBODY UPDATED WITH THE PROGRESS WE'RE MAKING AS A RESULT OF THEIR CONTRIBUTION SO PEOPLE CAN SEE EVERY DETAIL OF IT IN REALTIME AND WE DO THAT THROUGH SOCIAL MEDIA. BUILD THE MESSAGING WITH THE PATIENTS SO IT RESONATES. DON'T PUT SOMETHING OUT AND THEN LOOK FOR REACTIONS. SOLICIT THAT FEEDBACK BEFORE YOU PUT IT OUT AND THEN PATIENTS BECOME STAKEHOLDERS IN THE ENTIRE PROCESS AND THEY HELP SPREAD THAT MESSAGE. TAKE FEEDBACK SERIOUSLY AND SHOW IT, SO WE HEARD FROM -- AND IF ANYBODY IS INTERESTED IN THIS AFTERWARD, I CAN GIFL VERY DISCREET EXAMPLES OF THIS, BUT WHEN WE GET FEEDBACK, WE TAKE IT VERY SERIOUSLY AND THEN WE SHOW IT, PATIENTS WILL THEN SEE THAT CHANGE RS THEY'LL SEE IT ON OUR WEBSITE OR IN OUR MESSAGING AND REALIZE AND RECOGNIZE THEIR OWN VOICE AND THEY'LL SEE THE DIFFERENCE THEY'RE MAKING. SHARE PROGRESS AND RESULTS AS YOU GET THEM. BE AUTHENTIC. AGAIN, I MEAN, I THINK EVERY SINGLY PERSON WHO HAS COME UP TO THIS PODIUM HAS SAID IT, BE AUTHENTIC, BE YOURSELF, DON'T BE STAGNANT, DON'T BE A BOT, YOU KNOW, MAKE SURE PEOPLE CAN RELATE TO YOU. IF THEY CAN'T RELATE TO YOU, THAT'S FINE. FIND SOMEBODY IN THEIR COMMUNITY THAT THEY CAN RELATE TO AND BRING THEM ON AS PART OF YOUR TEAM. HAVE INTERACTIONS BEYOND SOCIAL MEDIA. GO TO CONFERENCES AND FIND PLACES TO MEET PATIENTS IN REAL LIFE SO THEY CAN GET TO KNOW YOU PARTICIPATE BEYOND THE PROJECT. I HAVE TOO MANY PEOPLE TO THANK, BUT OF COURSE ALL OF THE PATIENTS PARTICIPATING GET THE TOP RANK AND THEN NIKILE WAGLI, WHO IS THE PI OF THE METASTATIC BREAST CANCER PROJECT AS CHIEF AMONG THEM, AND OF COURSE OUR MANY ADVOCACY PARTNERS WHOM WE COULD NOT HAVE DONE THIS WITHOUT THANK YOU. [APPLAUSE] >> THAWRKS CORRIE. OUR SNEKS SPEAKER IS MARISA GERSTEIN PINEAU, A RESEARCHER AT THE FRAMEWORKS INSTITUTE, A SOCIOLOGIST BY TRAINING, HER RESEARCH HAS FOCUSED ON GENDER AND FAMILY, MEDICINE, CULTURE AND PUBLIC POLICY. PRIOR TO JOINING FRAMEWORK, SHE SERVED AS A PROGRAM OFFICER WITH THE NATIONAL ACADEMIES OF SCIENCES, ENGINEERING AND MEDICINE WHERE SHE WORKED WITH PANELS OF LEADING EXPERTS ON A VARIETY OF TOPICS. SHE CO-EDITED THE INTEGRATION OF IMPLANTS INTO AMERICAN SOCIETY, A COMPREHENSIVE REVIEW OF IMMIGRANT INTEGRATION INTO THE USES. MARISA RECEIVED HER BA A IN -- HER BA IN SOBER YOMG FROM THE NEW COLLEGE OF FLORIDA AND MA IN SOCIOLOGY FROM UCLA. MARISA? >> Marisa Gerstein Pineau: THANK YOU. THANK YOU, EVERYBODY FOR HAVING ME TODAY. I THINK THIS DISCUSSION MIGHT BE A LITTLE BIT DIFFERENT THAN SOME OF THE PREVIOUS DISCUSSIONS AND I'M GOING TO ENCOURAGE ALL OF YOU TO THINK ABOUT THINGS IN A SLIGHTLY DIFFERENT WAY MAYBE THAN YOU'VE DISCUSSED SO FAR, ALTHOUGH I HAVE A FEELING THIS WILL ALSO CONNECT TO A LOT OF PREVIOUS CUSHIONS. AND I'M GOING TO START WITH WHAT I SHOW A SOMEWHAT PROVOCATIVE QUESTION, WHICH IS WHO IS YOUR AUDIENCE FOR THESE COMMUNICATIONS IN SOCIAL MEDIA? SO OBVIOUSLY A LOT OF THE DISCUSSION HAS BEEN ABOUT PATIENTS, AND OF COURSE THEY'RE CENTRAL TO YOUR COMMUNICATIONS BECAUSE THEY'RE THE PEOPLE WHO ENROLL IN CLINICAL TRIALS. BUT RESEARCH HAS ALSO SHOWN THAT FAMILY MEMBERS ARE EXTREMELY INFLUENTIAL IN PEOPLE'S DECISIONS TO ENROLL, HEALTHCARE PROFESSIONALS OBVIOUSLY ALSO HAVE AN IMPORTANT ROLE. COMMUNITY MEMBERS AND FRIENDS AND COLLEAGUES MAY ALSO HAVE THOUGHTS ABOUT CLINICAL TRIALS. SO I WOULD ARGUE THAT ACTUALLY EVERYONE IS YOUR AUDIENCE FOR TALKING ABOUT CLINICAL TRIALS AND ENROLLING CLINICAL TRIALS BECAUSE NOT ONLY ARE PEOPLE MAKING DECISIONS IN THESE WIDE SOCIAL CONTEXTS, BUT AS A SOCIOLOGIST, I KNOW THAT PEOPLE MOVE THROUGH DIFFERENT SOCIAL ROLES THROUGHOUT THEIR LIVES, AND, YOU KNOW, A CANCER PATIENT UNFORTUNATELY MAY BE A ROLE THAT YOU MOVE THROUGH. AND WHEN YOU REACH THAT POINT IN YOUR LIFE, WHICH IS USUALLY A CRISIS POINT, IT'S NOT LIKE ALL OF YOUR PREVIOUS UNDERSTANDINGS AND ASSUMPTIONS ABOUT HEALTHCARE AND HEALTH AND MAYBE CLINICAL TRIALS WHICH YOU MAY HAVE HEARD OF AND MAYBE NOT JUST DISAPPEAR. YOU BRING ALL OF THOSE INTO THIS DECISION. SO I'M GOING TO TALK ABOUT OUR RESEARCH, WHICH IS MUCH MORE FOCUSED ON COMMUNICATING TO THE PUBLIC AT LARGE. SO THE FRAMEWORKS INSTITUTE'S MISSION IS TO ADVANCE THE NONPROFIT SECTOR COMMUNICATIONS CAPACITY BY TRANSLATING AND MODELING RELEVANT SCHOLARLY RESEARCH TO FRAME DISCOURSE ON SOCIAL PROBLEMS AND SCIENCE TRANSLATION AS WELL. SO WE'RE A NONPROFIT, WE WORK WITH NONPROFIT, WE TAKE A VERY MULTIDISCIPLINARY APPROACH. ALMOST EVERYBODY I WORK WITH IS A PH.D. IN SOCIAL SCIENCES, AS YOU CAN SEE, WE COME FROM A LOT OF DIFFERENT DISCIPLINES. I AM A SOCIOLOGIST. WHEN I STARTED AT FRAMEWORKS, THERE WAS ONLY ONE OTHER SOCIOLOGIST, NOW THERE'S THREE OF US, WHAT THE REST OF US DON'T KNOW IS IT'S THE START OF THE MARXIST REVOLUTION. [LAUGHTER] THAT'S COMING UP NEXT. DON'T TELL THEM. [LAUGHTER] THESE ARE SOME EXAMPLES OF OUR RESEARCH, AND I WANT TO HIGHLIGHT THE FIRST ONE WHICH IS UP THERE, I KNOW THERE'S A LOT GOING ON HERE, WHICH IS OUR LONGEST RUNNING WORK WITH THE HARVARD UNIVERSITY CENTER ON THE DEVELOPING CHILD. THIS IS WORK WE'VE BEEN DOING FOR ABOUT 20 YEARS WITH FOLKS AT THE CENTER, AND BASICALLY THEY CAME TO FRAMEWORKS AND SAID, YOU KNOW, ALL OF THIS INFORMATION ABOUT HOW YOUNG BRAINS DEVELOP AND WE'RE HAVING A REALLY HARD TIME EXPLAINING WHAT IT IS TO MEMBERS OF THE PUBLIC, CAN YOU HELP US? SO WE CREATE SOME COMMUNICATIONS TOOLS THAT HAVE REALLY OVER THE PAST 20 YEARS, THIS IS A LONG PROCESS, CAUGHT ON AND BECOME REALLY EASY SHORTCUTS FOR MEMBERS OF THE PUBLIC TO UNDERSTAND HOW YOUNG BRAINS DEVELOP. SO HAS ANYBODY HEARD OF TOXIC STRESS? A FEW PEOPLE. HAVE YOU EVER HEARD OF BRAIN ARCHITECTURE AND BUILDING YOUNG BRAINS? YEAH. SO THOSE ARE METAPHORS FOR TALKING ABOUT THE WAY BRAINS DEVELOP THAT ARE VERY DEEP INTO OUR DISCOURSE NOW AND ARE VERY COMMON, BUT STARTED WITH THIS WORK THAT WE DID ABOUT 20 YEARS AGO. SO WE ALSO WORK ON A LOT OF OTHER PUBLIC HEALTH INITIATIVES, EDUCATION, ALL SORTS OF DIFFERENT PROJECTS, AND I'M GOING TO ACTUALLY SHOW YOU SOME INFORMATION FROM OUR ORAL HEALTH PROJECT THAT WE DID WITH THE DEN TAQUEST FOUNDATION THAT FINISHED YOU WERE ABOUT A YEAR AGO -- FINISHED UP ABOUT A YEAR HAG. ORGANIZATIONS TEND TO COME TO US WHEN THEY HAVE A PROBLEM, AND WE CALL THIS THE YOU SAY THEY THINK PROBLEM. SO EXPERTS AND ADVOCATES SAY SOMETHING THAT SOUNDS COMPLETELY REASONABLE TO THEM, SO IT MIGHT BE SOMETHING ABOUT THE IMPORTANCE OF CLINICAL TRIALS, FOR INSTANCE, AND HOW THEY REALLY ADD TO OUR KNOWLEDGE AND IMPROVE CARE FOR CANCER PATIENTS AND MEMBERS OF THE PUBLIC WILL HEAR SOMETHING COMPLETELY DIFFERENT. SO WE HAVE NOT DONE DIRECT RESEARCH YET ON CLINICAL TRIALS, SO I'M GOING TO SHOW YOU AN EXAMPLE FROM ANOTHER PROJECT THAT WE'VE DONE. THIS IS ONE THAT WE DID ON RACIAL DISPARITIES IN ORAL HEALTH. ADVOCATES AND EXPERTS WERE SAYING SOMETHING LIKE, WELL, MOST ADULTS IN THIS COUNTRY HAVE SOME KIND OF CAVITY, UNTREATED TOOTH DECAY IS HIGHER AMONG SOME RACIAL MINORITIES, WE NEED TO WORK TO ELIMINATE THE BURDEN THAT ORAL DISEASE IS PLACING ON MINORITIES AS WELL AS ON PEOPLE EXPERIENCING POVERTY. SO IT'S ABOUT INEQUALITY, RIGHT? BUT THESE ARE SORT OF THE THINGS THAT THE PUBLIC HEARS, THINKS, EVEN WHEN THEY'RE GETTING THAT MESSAGE. SO HOPEFULLY MY VIDEO WORKS AND WE CAN HEAR IT. >> JUST CORE VALUES, WHY ARE PEOPLE 300 POUNDS? BECAUSE THEY EAT STUFF THEY SHOULD AND THEY DON'T EXERCISE AND THEY DON'T LOOK AFTER THEMSELVES. >> A PERSON THAT EATS OBVIOUSLY A LOT OF CAN DIERKS LIKE SWEETS AND DON'T BRUSH THEIR TEETH, YOU CAN GET TONS OF CAFLGHTS. >> PEOPLE YOU KNOW -- >> TONS OF CAVITIES. >> PEOPLE SAY YOU KNOW WHAT, I'LL DO IT TOMORROW. >> U TO TAIL QUAIR OF YOUR TEELT AND YOUR MOUTH. >> ONLY YOU'RE IN CHARGE OF IT IF YOU HAVE CHILDREN ZURNED 1-RB8GS THE PARENTS ARE RESPONSIBLE. >> UNDER 18, THE PARENTS ARE RESPONSIBLE. >> Marisa Gerstein Pineau: THE EXPERTS ARE TALKING ABOUT ARE IN EQUAL INEQUALITY AND PEOPLE ARE TALKING ABOUT YOU'RE RESPONSIBLE FOR YOURSELF AND PARENTS ARE RESPONSIBLE FOR YOUR KIDS. I WILL TALK ABOUT ACROSS ALL THE RESEARCH WE DO, PARENTS ARE ALWAYS TO BLAME FOR EVERYTHING. [LAUGHTER] EVEN IF WE DO RESEARCH ON CLINICAL TRIALS, PARENTS WILL BE RESPONSIBLE FOR SOMETHING HERE. SO WHAT WAS GOING ON THERE? SO MOST COMMUNICATIONS ABOUT RESEARCH STARTS WITH THIS ASSUMPTION THAT PEOPLE ARE BLANK SLATES, RIGHT? SO IF PEOPLE DON'T UNDERSTAND SOMETHING OR DON'T KNOW ABOUT SOMETHING, YOU CAN JUST, YOU KNOW, DROP YOUR MESSAGE INTO SORT OF THE EMPTY FISHBOWL OF THEIR MIND, TELL THEM SOMETHING ABOUT CLINICAL TRIALS AND THAT FISH IS GOING TO SWIM AROUND HAPPILY AND EVERYTHING WILL BE SOLVED. THEY'LL UNDERSTAND, THEY'LL BECOME ENGAGED, THEY'LL BECOME INTERESTED IN CLINICAL TRIALS. BUT ACTUALLY THIS IS NOT HOW HUMAN COGNITION WORKS. WHAT WE KNOW FROM SOCIAL SCIENCE IS THAT THE WAY PEOPLE'S BRAINS ARE IS MUCH MORE LIKE A SWAMP. SO I REALIZE THAT SWAMP HAS A SLIGHTLY DIFFERENT CONNOTATION NOW. BUT IT ACTUALLY WORKS VERY WELL FOR DESCRIBING PEOPLE'S BRAINS AND THE WAY THEY THINK BECAUSE SWAMPS ARE EXTREMELY COMPLEX ECO SRNLINGSZ RIGHT? THERE'S DANGEROUS THINGS IN WAWMPS, THERE'S FLESH EATING BACTERIA, THERE'S ALLIGATORS, THEY'LL EAT YOUR COMMUNICATIONS, BUT THERE'S ALSO VERY FERTILE SOIL, THERE ARE ORCHIDS AND WONDERFUL THINGS IN THOSE SWAMPS , IF YOU CAN NAVIGATE TO THOSE PLACES, YOU CAN CREATE COMMUNICATIONS THAT ARE REALLY GOING TO WORK. SO WHAT'S IN THOSE SWAMPS IS WHAT WE CALL CULTURAL MODELS. SO THIS COMES PARTICULARLY OUT OF THE AN THROW POE LOGICAL RESEARCH BUT IS ALSO USED IN THE OTHER SOCIAL SCIENCE RESEARCH, AND THESE ARE THESE COGNITIVE SHORT CUTS, THEY'RE SORT OF THE TAKEN FOR GRANTEDDED AUTOMATIC ASSUMPTIONS THAT AWFUL US HAVE THAT ARE BUILT OUT OF OUR EXPERIENCE OF LIVING IN THE WORLD CHT. AND WILL WE USE THESE TO INTERPRET AND MAKE MEANING OF STIMULI AND THINGS THAT WE ENCOUNTER ALL THE TIME INCLUDING COMMUNICATIONS THAT YOU GET ABOUT YOUR HEALTH, FOR INSTANCE. WHAT WE KNOW IS THAT THERE ARE MULTIPLE MODELS AVAILABLE. SOME RM MORE USEFUL FOR YOUR COMMUNICATIONS THAN OTHERS AND WHAT YOU NEED TO DO WHEN YOU'RE CREATING COMMUNICATION STRATEGIES, WHETHER ON SOCIAL MEDIA OR ELSEWHERE IS MAKE SURE THAT YOU'RE ACTIVATING THE PRODUCTIVE WAYS OF THINKING. SO I'M GOING ON GET A LITTLE DEEPER INTO WHAT CULTURAL MODELS ARE AND THEIR IMPLICATIONS. SO ONE THING IS THAT THEY'RE SHARED. SO ACROSS A COUNTRY, WE DO HAVE SOME UNIFYING CULTURE, YOU KNOW, WE HAVE A SHARED BELIEF THAT WE LIVE IN ONE COUNTRY AND WE WORK THROUGH THE INSTITUTIONS THAT ARE PART OF THAT COUNTRY, AND THESE CREATE MODELS THAT ARE RELEVANT TO ALL AUDIENCES EVEN FROM VERY DIFFERENT BACKGROUNDS. IN ADDITION, THEY'RE MULTIPLE, THEY'RE OFTEN CONFLICTING, IT'S REALLY AMAZING TO ME WHEN I DO MY RESEARCH TO HEAR PEOPLE TALK ABOUT THINGS IN VERY DIFFERENT WAYS, YOU KNOW, INDIVIDUALS ARE TOTALLY IN CHARGE OF THEIR OWN HEALTH, BUT THE GOVERNMENT ALSO HAS SOME ROLE IN HELPING PEOPLE IMPROVE THEIR HEALTH, BUT REALLY IT'S INDIVIDUALS. WELL, MAYBE THE GOVERNMENT SHOULD DO SOMETHING. I MEAN, IT'S REALLY IMPRESSIVE THE WAY PEOPLE TALK ABOUT THIS. THEY'RE VERY DURABLE, SO THE THING ABOUT CULTURE IS THAT IT'S DYNAMIC BUT IT'S ALSO KIND OF HARD TO SHAKE AT THE SAME TIME. WE ADD THINGS TO OUR CULTURE, BUT THE THINGS THAT WERE PREVIOUSLY THERE DON'T DISAPPEAR , SO THAT MEANS THAT THE RESEARCH THAT WE DO HAS A LONG SHELF LIFE. AGAIN, THERE'S THIS IDEA, WE KNOW THAT THERE ARE SOME MODEL LSZ THAT ARE PRODUCTIVE FOR SOME COMMUNICATIONS, UNPRODUCTIVE FOR OTHERS, AND THAT THEY'RE ACTIVATED BY ASSOCIATION AND YOU CAN FIGURE OUTER -- YOU CAN FIGURE OUT WHAT THE TOOLS ARE THAT WILL ACTIVATE THE MODELS THAT YOU WANT PEOPLE TO USE. SO IF YOU WANT PEOPLE TO USE A MORE SYSTEMS WAY OF THINKING, THERE ARE CUES YOU CAN CREATE THAT WILL PUSH THEIR INDIVIDUAL IST WAYS OF THINKING TO THE BACKGROUND AND BRING THAT SYSTEMS THINKING TO THE FORE. SO WE DO THIS USING FRAMES, AND I THINK THERE WAS PROBABLY SOME TALK ABOUT FRAMING HE REMEMBERER -- FRAMIN G EARLIER, I& BELIEVE. FRAMES ARE SETS OF CHOICES ABOUT THE INFORMATION YOU PRESENTED. SO IT'S HOW YOU -- WHAT YOU EMPHASIZE, HOW YOU EXPLAIN IT, WHAT YOU SAY AND ALSO WHAT YOU LEAVE UNSAID. I WOULD ARGUE THAT WHEN YOU MAKE A DECISION NOT TO FRAME YOUR INFORMATION, YOU'RE ACTUALLY STILL FRAMING IT BY JUST LETTING PEOPLE BRING THEIR OWN UNDERSTANDINGS TO WHATEVER YOU'RE SAYING. SO A FRAME THAT WORKS WILL SHIFT THINKING IN MULTIPLE WAYS, AND ACTUALLY THE LAST ONE SHOULD BE WE TEND TO FOCUS ON POLICY, BUT I THINK IN THIS CASE ENGAGEMENT IS THE BEST EXAMPLE. BUT UNDERSTANDING IS VERY IMPORTANT AND KNOWLEDGE IS A WAY THAT FRAMES CAN CHANGE THINKING, CAN CHANGE ATTITUDES, IT CAN CHANGE SUPPORT FOR POLICIES AND IT CAN CHANGE ENGAGEMENT, AND I'LL SHOW YOU A FEW SPECIFIC EXAMPLES FOR CLINICAL TRIALS, AND I DREW THIS INFORMATION ACTUALLY FROM THE NC I WEBSITE ON CLINICAL TRIALS, SO THE TYPE OF KNOWLEDGE THAT YOU WANT PEOPLE TO HAVE THAT A FRAME COULD POTENTIALLY GET PEOPLE TO IS THAT CLINICAL TRIALS IMPROVE CANCER TREATMENT AND PATIENTS' QUALITY OF LIFE, IT COULD CHANGE ATTITUDES, SO THE ATTITUDES THAT YOU'RE TRYING TO CHANGE IS THAT THESE ARE A VITAL PART OF CANCER TREATMENT, AND WHEN THEY ENROLL, THEY HAVE AN OPPORTUNITY TOAKS UP AND DOWN KNOWLEDGE, AND THEN ENGAGEMENT, SO THIS IDEA THAT IT'S PATIENTS AND THEIR FAMILIES AND THEIR HEALTHCARE PROVIDERS ARE ALL GOING TO COME TOGETHER AND DISCUSS THIS INFORMATION AND MAKE SOME DECISIONS TOGETHER. SO THOSE ARE THE TYPES OF THINGS THAT YOU WANT PEOPLE TO TAKE AWAY FROM YOUR WEBSITE, FROM YOUR FACEBOOK POSTS, MAYBE FROM YOUR TWEET, RIGHT? YOU WANT THEM TO COME AWAY WITH THAT. BUT YOU HAVE TO MAKE SURE THAT YOU'RE CREATING FRAMES THAT LEAD PEOPLE TO THAT TYPE OF THINKING AND NOT TO OTHER TYPES OF THINKING THAT JUST AREN'T GOING TO DO THE WORK THAT YOU WANT IT TO DO. SO HERE ARE SOME IMPORTANT FRAME ELEMENTS THAT YOU CAN USE. WE AT FRAMEWORKS ARE HUGE FANS OF EXPLANATORY METAPHORS, SO TOXIC STRESSES AND BRAIN ARCHITECTURE ARE EXAMPLES OF THAT. THESE ARE KIND OF SHORTCUTS. THESE WILL WAYS -- THESE ARE WAYS TO HELP PEOPLE UNDERSTAND VERY COMPLEX THINGS USING THINGS THEY ALREADY UNDERSTAND. WE ALL THINK IN METAPHOR ALL THE TIME, I ACTUALLY CHALLENGE ALL OF YOU SPHOAND THE REST OF YOUR DAY AND EVERY TIME YOU USE A METAPHOR MAYBE THINK ABOUT THE FACT YOU'RE USING A METAPHOR AND YOU'LL DISCOVER THAT IT'S HAPPENING LIKE EVERY 20 MINUTES OR SOMETHING, IT'S VERY PERVASIVE. ALSO VALUES IS ANOTHER ONE WE LIKE TO USE, NARRATIVE, ET CETERA. I DON'T WANT TO GET TOO DEEP INTO THAT. THEN I WANTED TO TALK BRIEFLY ABOUT LAZ WE WILL'S NODLE -- LAZ WELL'S MODEL OF COMMUNICATION I THINK THAT GOES BACK TO THAT AUDIENCE COMMUNICATION. HIS MODEL WAS WHO SAYS WHAT IN WHICH CHANNEL TO WHOM AND WITH WHAT EFFECT. RIGHT? SO THINKING SPECIFICALLY ABOUT WHAT THIS WORKSHOP HAS BEEN ABOUT USING THAT MODEL, THE WHO IS NCI AND OARM INFLUENTIAL FRAME SPONSORS, SAYS WHAT, SO USING WELL FRAMED EXPLANATION OF WHAT CLINICAL TRIALS ARE SO PEOPLE REALLY UNDERSTAND THEM AND ARE INTERESTED IN JOINING, VIA SOCIAL MEDIA WITH THE PUBLIC AT LARGE AND IN ORDER TO INCREASE UNDERSTANDING AND ALSO INTEREST. SO WILLIVELY MORE SLIDES THAN I HAVE TIERNLINGS AS USUAL. SO I WANT TO SAY I FEEL LIKE I HAVE A FEW SPECIFIC THINGS ON SOCIAL MEDIA, BUT I DON'T WANT TO SKIP THIS BECAUSE THIS IS INCREDIBLY IMPORTANT. A LOT OF TIMES IN COMMUNICATIONS MANY OF US COME TOGETHER AND THINK OF A FRAME THAT WE THINK WILL WORK AND WE GO OUT AND USE IT IN ALL OF THE THINGS THAT WE -- ALL OF OUR COMMUNICATIONS, SO ON SOCIAL MEDIA, ET CETERA. SOMETHING THAT'S REALLY CRITICAL TO UNDERSTAND IS THAT FRAMING IS AN EMPIRICAL PROCESS AND YOU NEED TO UNDERSTAND THE SCIENCE AND THE RESEARCH BEHIND FRAMING BEFORE YOU TRY AND FRAME SOMETHING. I'M JUST GOING ON GIVE YOU -- I'M JUST GOING TO GIVE YOU A QUICK EXAMPLE FROM OUR OWN RESEARCH AND THEN I'LL PROBABLY HAVE TO STOP. THIS IS RESEARCH WE DID IN ALBERTA, CANADA, WHERE THEY WERE TRYING TO RAISE SUPPORT FOR EVIDENCE-BASED ADDICTION POLICIES, AND A LOT OF MONEY OVER MANY YEARS HAD BEEN SPENT BY ADVOCATES AND FOUNDATIONS THERE TO TRY AND GET ALBERTANS TO SUPPORT THESE POLICIES AND THEY CAME TO US AND SAID WE'RE GETTING NO TRACTION. SO WE RAN A STUDIED WITH A SURVEY EXPERIMENT WITH 6,000 PEOPLE. THERE ARE MORE THAN 6,000 PEOPLE LIVING IN ALBERTA AT THAT, CANADA, AS IT TURNS OUT, AND WE TESTED THREE FRAMES, SO INTER DEPENDENCE RG THE IDEA THAT WE ALL RELY ON ONE ANOTHER IN ALBERTA AND WE'RE ONLY AS STRONG OUR WEAKEST MEMBER SO WE -- WE'RE ONLY AS STRONG AS OUR WEAKEST MEMBER SO WE NEED TO SUPPORT EACH OTHER SO WILL WE HAVE A STRONGER PROVINCE. ALBERTANS KNOW HOW TO TACKLE HARD PROBLEMS, WE'VE DONE IT BEFORE, WE CAN TACKLE THE PROBLEM OF ADDICTION, PEOPLE WHO ARE DID ADDICTION, OUR MOTHERS, BROTHERS, SISTERS, WE SHOULD FEEL EMPATHETIC AND COMPASSION AND WANT TO HELP THEM. WE GAVE PEOPLE THESE FRAMES AND THEN THE FOLKS ALONG THE BLACK LINE THAT REPRESENTS THE CONTROL GROUP SO THEY GOT NO FRAME BEFORE THEY WERE ASKED A SERIES OF QUESTIONS ABOUT EVIDENCE-BASED POLICIES AND WHETHER OR NOT THEY SUPPORTED THEM. AND WHAT WE FOUND WAS THAT INTER DEPENDENCE WORKED VERY WELL ACTUALLY TO SIGNIFICANT LEVEL AND INCREASING PEOPLE'S SUPPORT FOR THESE ADDICTION POLICIES, INGENUITY DID PRETTY WELL BUT NOT GREAT. EMPATHY ACTUALLY HAD THE OPPOSITE EFFECT, SO PEOPLE WHO GROT THE EMPATHY MESSAGE WERE LESS LIKELY TO SUPPORT THE EVIDENCE BASE ADDICTION POLICIES AND PEOPLE GOT NO MESSAGE AT ALL -- THAN PEOPLE THAT GOT NO MESSAGE AT ALL. THESE ADVOCATES CATS AND FOUNDATIONS HAVE BEEN SPENDING MILLIONS OF DOLLARS USING THE EMPATHY FRAME, OVER 90 PERCENT OF THEIR COMMUNICATIONS USED IT, AND THEY WERE ACTUALLY WORKING AGAINST THEIR BEST INTERESTS. ALWAYS TEST YOUR FRAMES BEFORE YOU GO OUT AND START USING THEM OF THE I'M DONE, SO I'M NOT GOING TO GET A CHANCE TO TALK SPECIFICALLY ABOUT SOCIAL MEDIA, BUT I HOPE THAT THIS JUST HELPED YOU THINK A LITTLE BIT DIFFERENTLY ABOUT AUDIENCE AND FRAMING AND HOW YOU WANT TO COMMUNICATE AND I WILL JUST SAY YOU CAN DEFINITELY FRAME ON SOCIAL MEDIA BUT YOU WANT TO MAKE SURE YOU'RE USING TESTED FRAME. SO THANK YOU. [APPLAUSE] >> THANK YOU, MARISA. OUR NEXT SPEAKER IS WENDY LAWTON WENDY IS THE COMMUNICATIONS MANAGER AT SWOG OVERSEEING ALL INTERNAL AND EXTERNAL COMMUNICATION AS WELL AS PATIENT ADVOCACY AND DIGITAL ENGAGEMENT. SHE LED THE REDESIGN AND REBUILD OF SWOG.NOW -- EXCUSE ME, SWOG .ORG, NOW THE ONLY MOBILE RESPONSIVE WEBSITE IN THE NCI'S NATIONAL CLINICAL TRIALS NETWORK SHE IS A FORMER NEWSPAPER REPORTER WITH 25 YEARS OF EXPERIENCE IN COMMUNICATIONS AND FUNDRAISING IN SUPPORT OF MEDICINE AND SCIENCE. THIS WORK INCLUDED WORK IN RESEARCH MEDIA RELATIONS AND CORPORATE AND FOUNDATION RELATIONS FOR SCIENCE AT BROWN UNIVERSITY. WENDY? >> Wendy Lawton: THANK YOU SO MUCH. HI, EVERYBODY. I'M WENDY LAWTON AND I'M WITH SWOG, AND I JUST WANTED TO SAY CONGRATULATIONS, YOU GUYS HAVE MADE IT THROUGH 32 SLIDE PRESENTATIONS, MINUS THE LAST. YEAH, I KNOW. YAY! BUT YEAH. SO I'M WITH SWOG, AND SOME OF YOU FOLKS KNOW WHO WE ARE AND SOME MIGHT NOT, BUT WE WERE FOUNDED BY AND FUNDED BY THE NATIONAL CANCER INSTITUTE IN 1-9D 56 AND WE ARE PART -- IN 1956 AND WE ARE PART IN OTHER WORDS IN THE NATIONAL CLINICAL TRIALS NETWORK AND THE NCI'S NATIONAL COMMUNITY ONCOLOGY RESEARCH PROGRAM, SO WE'RE PARTNERS WITH THE ALLIANCE. WE'RE PARTNERS WITH CHILDREN'S ONCOLOGY GROUP, EGOG AND NRG, AND YOU'VE HEARD PRESENTATIONS FROM ALL MY COMMUNICATIONS COUNTERPARTS, AND WE'RE ALL CONNECTED. TODAY I REALLY WANTED TO SHARE MY VISION FOR HOW WE AS PART OF THE NCTN AND NCOR WHICH YOU'LL HEAR A LOT ABOUT IN MY PRESENTATION CAN MOVE FORWARD TOGETHER TO CONNECT WITH THE PUBLIC ABOUT OUR CANCER TRIALS. YOU'LL SEE THAT MY PRESENTATION DOESN'T JUST FOCUS ON SOCIAL MEDIA CHANNELS, BUT ALSO WEBSITES, SEARCH ENGINES, AND COMMUNICATION CORNSTONES SUCH AS BRAND IDENTITY, SOCIAL MEDIA IS PART OF AN ONLINE ECOSYSTEM AND SO I WANTED TO LOOK AT THE WHOLE SYSTEM TO MAKE IT WORK. THERE WE GO. SO I WANTED TO START WITH A VIEW OF THE DIGITAL LANDSCAPE FOR CLINICAL TRIALS. WE KNOW THIS, THAT THE INTERNET IS INCREASINGLY HOW PEOPLE FIND CLINICAL TRIALS. CENTER WATCH DATA SHOWS THAT 60 PERCENT OF PATIENTS ARE FINDING OUT ABOUT TRIALS ONLINE, AND THAT'S COMPARED TO 21 PERCENT GETTING EDUCATED ABOUT THEM FROM DOCTORS, FRIENDS OR FAMILY. SO 3 TO 1, PEOPLE ARE FINDING OUT ABOUT TRIALS ON DIGITAL DEVICES RATHER THAN HUMAN BEINGS AND WHEN THE PUBLIC DOES GO ONLINE TO LEARN ABOUT TRIALS, THEY FIND A VERY CROWDED ROOM. THESE ARE STATISTICS ON THE NUMBER OF TRIALS FOR ALL DISEASE TYPES ON CLINICAL TRIALS.GOV, SO WE CAN SEE THAT CLINICAL RESEARCH HAS REALLY EXPLODED IN THE LAST 15 YEARS. IN THE NCTN AND NCOR ALONE, SO ALL OF THE NATIONAL CANCER INSTITUTE FUNDED TRIALS, WE HAVE AT ANY GIVEN TIME 200 TRIALS THAT ARE OPEN AND RECRUITING PATIENTS IN SIELTS ACROSS THE COUNTRY. THAT'S 200 OPEN TRIALS AT ANY GIRVE TIME. -- AT ANY GIVEN TIME. SO THE LANDSCAPE IS CROWDED AND IT'S CONFUSING. BECAUSE OF DATA LIMITATIONS ON THE BACK END ORAL INTERFACE ISSUES ON THE FRONT END, A LOT OF TRIAL SEARCH TOOLS ARE REALLY TOUGH TO USE AND THE RESULTS ARE LIMITED, BUT I BELIEVE THAT THE REAL PROBLEM IS LANGUAGE. WE USE WORDS THAT PEOPLE DON'T UNDERSTAND. WE CAN CREATE THE MOST INTUITIVE AND HIGH POWDER SEARCH TOOL, BUT IF THE RESULTS ARE RIDDLED WITH RESEARCH CONCEPTS AND SCIENTIFIC TERMS AND FIVE-SYLLABLE DRUG NAMES, WE ARE GOING TO KEEP GETTING THIS. WE ARE MAKING PEOPLE FRUSTRATED. THERE'S NOTHING I LOVE MORE THAN AN ANALOGY, FOR PEOPLE WHON ME WELL, ESPECIALLY A FOOD ANALOGY, AND I THINK IN THE CASE OF ONLINE CANCER CLINICAL TRIALS, WE'RE GIVING THE PUBLIC A 28- PAGE MENU THAT'S WRITTEN IN FRENCH, AND WHEN THEY TRY TO ORDER, THERE'S NO WAITER IN SILENT. NOW, THIS -- NO WAITER IN SIGHT. NOW, THIS IS WHERE WE ALL WANT TO GO. WE WANT PEOPLE TO KNOW ABOUT TRAILS, AND WE WANT THEM TO UNDERSTAND THEIR BENEFITS AND THEIR RISKS AND DECIDE IF THEY'RE RIGHT FOR THEM AND IF ALL OF THESE CONDITIONS ARE MET, PEOPLE WILL LIKELY ENROLL IN THOSE TRIALS, AND THEY CAN MAKE THIS DECISION OR GET MOST OF THE WAY IT THERE ONLINE, RIGHT THERE , RIGHT THEN. IN TODAY'S AMAZON ECONOMY, PEOPLE EXPECT TO GO ONLINE AND GET WHAT THEY NEED QUICKLY AND EASILY. WITH FULL CUSTOMER SUPPORT. MORE AND MORE ONLINE IS WHERE AND HOW THINGS HAPPEN, AND SOCIAL MEDIA IS A REALLY IMPORTANT PART OF THE DIGITAL LANDSCAPE, EXPIT THE PLACES WHERE WE CAN HAVE A TWO-WAY CONVERSATION WITH PROVIDERS AND THE PUBLIC. SO I WAS THINKING ABOUT HOW TO GET TO THIS, HOW TO GET TO HERE AND HOW TO SHAPE A SOCIAL MEDIA STRATEGY FOR SWOG, I CAME UP WITH THIS LIST. SO THIS IS MY VISION FOR A SOCIAL FUTURE FOR SWOG TRIALS AND PERHAPS FOR ALL NCI TRIALS. AND THE VISION IS UNIFIED. ONE IN WHICH WE USE SOCIAL MEDIA TO EXPRESS OUR VALUE AS A NETWORK AND BE A CRITICAL PART OF THE CONVERSATION ABOUT CANCER TRIALS. TRIALS IN MANY CASES THAT NO SINGLE ACADEMIC MEDICAL CENTER OR PHARMACEUTICAL COMPANY CAN OR WILL DO. WE PROVIDE AN ENORMOUS VALUE, AND WE CAN SPEAK WITH ONE VOICES TO EXPRESS -- WITH ONE VOICE TO EXPRESS THAT VALUE. MY VISION FOR SWOPG AND THE NCTN DOES NOT INCLUDE AGGRESSIVELY PROMOTING A BUNCH OF TRIALS ALL THE TIME. WELL 26 OPEN TRIALS AT SWOG AND WITH 200 OPEN TRIALS IN OUR NETWORK, THIS STLAT JI WOULD PRODUCE A LOT OF -- STRATEGY WOULD PRODUCE A LOT OF NOISE AND NOT MUCH SIGNAL, AND PEOPLE ON SOCIAL MEDIA OR ANYWHERE FOR THAT MATTER JUST DON'T WANT TO BE SOLD TO, AND JUST ASK ME AND THE 200 OR 2 BILLION OTHER USERS OF FACEBOOK WHO CONSTANTLY GET BOMBARDED WITH PROMOTED POSTS AND CREEPY ADS. THE NC I I THINK DOES A REALLY NICE JOB ON ITS TWITTER CHANNELS EDUCATING ABOUT IMMUNOTHERAPY OR PRECISION MEDICINE OR HPV VACCINES, THEY ADROPT A NEUTRAL HELPFUL STANCE THAT I THINK IS SMART AND SHOULD BE ELM 4R5EU89D WE ALSO KNOW -- EMULATED. WE ALSO NEED TO SHOW THAT WE HAVE SOMETHING TO OFFER AND PROVE THAT WE'VE MADE A DIFFERENCE IN CANCER TREATMENT AND PREVENTION. WE NEED TO THINK ABOUT PATIENTS AND HOW WE WRITE AND DESIGN ON SCHIEN APPROXIMATE WE NEED TO REMEMBER THAT WHEN IT COMES TO THE INTERNET, PEOPLE'S BEST EXPERIENCE IS THEIR NEXT EXPERIENCE. ONCE THEY GET THE BEST, THEY EXPECT THAT LEVEL OF EASE EVERY TIME, AND THAT'S WHAT WE'RE COMPETING WITH. ALL OF THESE THINGS AT THEIR HEART MEAN PUTTING THE PUBLIC'S NEEDS FIRST, ABOVE OUR OWN NEED TO ACCRUAL OR APPEASE OR PROMOTE OR SAVE MONEY OR SAVE TIME. IT MEANS GIVING THE PUBLIC WHAT THEY NEED ANDMENT, AND IF WE WORK WITH THE PUBLIC IN MIND, WE GET THIS, WE GET TRUST AND UNDERSTANDING. IF PEOPLE UNDERSTAND CANCER TRIALS AND THEY TRUST US AS THE DESIGNERS AND MANAGERS OF THOSE TRIALS, THEY'LL PARTNER WITH US AND ENROLL IN OUR TRIALS, AND THAT'S A LONG GAME. SO HOW DO WE GET THERE? FIRST WE NEED SOMETHING TO SAY. WE NEED A VAWRL VALUE PROPOSITION FOR NCTN AND NCOR, WE NEED TO EXPRESS AN IDENTITY, SHOAL OUR VALUE, AND BEFORE WE CAN ACTUALLY SHARE THAT ON SOCIAL MEDIA, AT SWOG WE LAUNCHED A NEW WEBSITE IN NOVEMBER AND THAT GAVE ME A REALLY GREAT REASON TO RESEARCH OUR OWN IMPACT AND VALUE, THE RESULTS OF WHICH I TURNED INTO THIS VIDEO WITH MY COUNTERPART MORGAN COX AT THE HOPE FOUNDATION, WHICH IS OUR CHARITY , AND STOIPTD SHARE IT WITH YOU. -- AND I WANTED TO SHARE IT WITH YOU. LET'S SEE. [MUSIC] >> ALL NEW CANCER TREATMENTS COME FROM CLINICAL TRIALS, BUT NOT ALL TRIALS ARE ALIKE. PHARMACEUTICAL COMPANIES RUN TRIALS TESTING CUTTING EDGE TREATMENTS. THEY ARE THE DRUG EXPERTS. HOSPITALS AND CLINICS ALSO RUN CLINICAL TRIALS. THEY'RE THE PATIENT EXPERTS. SWOG BRINGS THE EXPERTS TOGETHER WE HAVE OVER 12,000 MEMBERS, DOCTORS, NURSES, SCIENTISTS, STALT STITIONS, PHARMACIST, AND PATIENT ADVOCATES. -- STATISTICIANS, PHARMACISTS AND PATIENT ADVOCATES. THEY COME FROM OVER 1,000 CAN CANCER CENTERS, WE ALSO PARTNER WITH BIG DRUG COMPANIES AND SMALL START-UPS. WE'RE PROUDLY FUNDED BY THE NATIONAL CANCERS INSTITUTE, THE NATION'S LEADING CANCER RESEARCH ORGANIZATION, WITH PUBLIC FUNDS COMES TRUST AND TRANSPARENCY. DOCTORS DESIGN OUR TRIALS AND WE PUBLISH ALL OUR RESULTS, BECAUSE OF OUR INDEPENDENCE AND OUR SIZE , WE CAN LEAD TRIALS THAT OTHERS CAN'T OR WON'T. SO THAT'S THE SWOG DIFFERENCE. OUR TRIALS COMBINE THE LATEST IN DRUG DEVELOPMENT WITH THE BRIGHT EST MINDS IN RESEARCH, SEEKING BETTER OUTCOMES FOR PATIENTS EVERYWHERE, AND WE'VE MADE AN IMPACT. SINCE 1956, SWOG RESEARCH HAS LED TO FDA APPROVAL OF 14 CANCER DRUGS, MORE THAN 100 IMPROVEMENTS TO MEDICAL PRACTICE , AND MORE THAN 3 MILLION YEARS OF HUMAN LIFE SAVED. OUR SUCCESS IS YOURS. CAN TAX DOLLARS PAY FOR OUR WORK AND PATIEN VOLUNTEERS MAKE OUR TRIALS POSSIBLE. THANK YOU FOR YOUR SUPPORT. [APPLAUSE] >> THAWVMENT AS YOU GUYS CAN SEE -- THANK YOU. APPEARS YOU GUYS CAN SEE, MOST OF THIS CONTENT IS APPLICABLE TO ALL NCTN GROUPS AND WE COULD MAKE A VIDEO LIKE THIS FOR NCTN AND WE COULD MAKE A SIMILAR VOLE FOR NCOR. IF WE WANT TO JOIN TOGETHER AND EXPLAIN OUR WORK, WE NEED A SHARED VISUAL IDENTITY ON SOCIAL MEDIA, AND WE DON'T HAVE THIS RIGHT NOW. WE COULD CREATE SOCIAL MEDIA GRAPHICS AND HASH TAGS AND CAMPAIGNS BUILT AROUND THEM, WORK THAT LINKS THESE NCI GROUPS TOGETHER AND SHOWS THAT WE'RE RELATED WITH THE SAME PARENTS IN NCTN AND NCOR. STARTING IN NOVEMBER 2017 THE NC TN COMMUNICATION STAFF KICKED OFF QUARTERLY CONFERENCE CALLS AND WERE TALKING ABOUT SOME SORT OF ITERATION OF THESE, SOME SORT OF VISUAL BRIDGE THAT LINKS US TOGETHER, AND WE'RE NOT YET, BUT THIS GIVES YOU A GENERAL IDEA OF SOME OF THE DESIGNS WE'RE LOOKING AT. AS I'VE MENTIONED, I REALLY BELIEVE THAT PLAIN LANGUAGE IS CRITICAL TO CLINICAL TRIAL ENGAGEMENT, AND OUR NEURONCTN OPERATIONS CENTER GRANT SWOG ASKED FOR FUNDING FOR A PLAIN LANGUAGE WRITER TO WRITE WEB PAGES, SOCIAL MEDIA POSTS, TRIAL RESULT SUMMARIES AND OTHER PUBLIC FACING CONTENT. THE MORE PLAIN LANGUAGE SEUSSED BY NCI GROUPS, THE MORE SUCCESSFULLY WE'LL ENGAGE THE PUBLIC. AND I'M NOT THE ONLY ONE THAT AGREES. 35 CLINICAL TRIAL GROUPS INCLUDING ASCO, CANCER SUPPORT COMMUNITY AND SIX PHARMA COMPANIES LAST YEAR WROTE THE FD A ASKING FOR GUIDANCE DOCUMENTS ON URGS PLAIN LANGUAGE TO REPORT CLINICAL TRIAL RESULTS WE ALL KNOW WE NEED TO IMPROVE PUBLIC TRIAL SEARCH TOOLS, AND I'M REALLY PLEASED THAT BOTH CANCER POILT GOV AND -- CANCER. GOV AND CLINICAL TRIALS. GOV CAN HAVE BEEN AND WILL CONTINUE TO BE IMPROVED. A MINDSET OF CONTINUOUS UPDATES AND UPGRADES IS WHAT WE NEED. WE REBUILT SWOG.ORG AND REBUILT ALL OUR SEARCH TOOLS AND ARE WORKING ON OUR FIRST ROUND OF IMPROVEMENT SIX MONTHS AFTER OUR LAUNCH. I'M ALSO PLEASED THAT NCI IS LOOKING AT NEW IDEAS FOR IMPROVING BOTH DATA AND FUNCTIONALITY WITH SEARCH AND PUT OUT AN RFI ON THE TOPIC THAT JUST CLOSED FOR COMMENTS AND I'M REALM EAGER TO SEE -- AND I'M REALLY EAGER TO SEE THE CHANGES THAT RESULT FROM THAT. FINALLY, WHAT I THINK IS THE MISSING LINK, AS I'VE SAID, I THINK THE PUBLIC IS REALLY USED TO GREAT ONLINE CUSTOMER SERVICE , A TOLL-FREE NUMBER OR A LIVE CHAT WINDOW AND THEY CAN CONNECT WITH A REAL HUMAN BEING AND GET THEIR QUESTIONS ANSWERED AND I THINK THAT THE N CRI CON -- NC I I CONTACT CENTER GETSER THERE, I'M A HUGE FAN OF THE CONTACT CENTER O A ONE TIME BASIS THEY GAVE ME PERMISSION TO USE THE 1-800 FOR CANCER NUMBER ON TWITTER GRAPHICS FOR OUR DART CANCER TRIAL T IT'S A PILOT AND IF IT DOESN'T OVERWHELM THE CENTER, AND I DON'T THINK IT HAS , WE'LL TRY TO USES THAT NUMBER TO PROMOTE SOME OF OUR OTHER IT TRIALS, AND I THINK THE ABILITY TO HAVE A FRIENDLY NEUTRAL TRAINED PROFESSIONAL ANSWERING PUBLIC QUESTIONS ABOUT OUR MOST IMPORTANT TRIALS IN THE NCI IS SO CRITICAL TO DEVELOPING PUBLIC TRUST AND UNDERSTANDING. WHILE I DON'T THINK THAT THE CONTACT CENTER SHOULD BE IN THE BUSINESS OF TRIAL MATCHING OR PATIENT NAVIGATION, THEY COULD BE DEPLOYED AS AN EDUCATION RESOURCE ON SOCIAL MEDIA AS WE PROMOTE OUR MOST HIGH PRIORITY N CTN AND NCOR TRIALS. SO IT THIS SESSION -- SO THIS SESSION WAS AIMED AT GIVING CONCRETE STEPS THAT WE COULD ALL TAKE AND THAT THE NCI COULD TAKE TO DEVELOP AN EFFECTIVE SOCIAL MEDIA STRATEGY, AND THIS IS MY WISH LIST FOR THE NCI. I THINK THAT IF SOME OR ALL OF THESE STEPS ARE TAKEN, I THINK THAT WE WOULD HAVE A STRONG SUCCESSFUL AND ACCOUNTABLE SOCIAL FUTURE. I TURNED IN THESE SLIDES A WEEK AGO, AND AFTER BEING HERE TODAY AND YESTERDAY, I WOULD LOVE TO ADD A FEW THINGS TO THE WISH LIST, INCLUDING SOME SORT OF GUIDANCE OR LEADERSHIP ON THE ISSUE OF SOCIAL MEDIA LISTENING AND LISTENING TOOLS. I THINK THE NC I COULD PLAY A GREAT LEADERSHIP ROLE IN THAT, AND ALSO BASED ON THE LAST SESSION THAT HOLLY LED, A METRICS AND ALSO PROVIDING SOME GUIDANCE ON USING METRICS SO WE ALL CAN SORT OF HOLD OURSELVES ACCOUNTABLE. AND I JUST WANTED TO SAY THANK YOU SO MUCH FOR THE OPPORTUNITY AND THANKS AGAIN TO THE NC I FOR ORG NIERSING THIS REALLY IMPORTAT -- FOR ORGANIZERRING THIS REALLY IMPORTANT EVENT. [APPLAUSE] >> OKAY. WE HAVE TIME FOR QUESTIONS. >> I REMIT IWOC THAT SERVES AS A CENTRAL CORE FOR THE NCTN. ON THE IMAGING AND RADIATION ONCOLOGY SIDE. FIRST OF ALL, I THINK THIS HAS BEEN A FANTASTIC WORKSHOP. I WOULD REALLY LIKE TO JUST PICK UP ON YOUR LAST SLIDE AND THE THEME AND JUST ADD ONE OTHER COMPONENT TO THIS. I THINK HOW WE PROVIDE TO PATIENTS ALSO MORE INFORMATION ABOUT ALL THE ADJUNCTIVE EFFORTS THAT GO INTO A CLINICAL TRIAL, SO YOU KNOW, AS IT RELATES TO WHAT IS THE IMAGING EXPERIENCE, WHAT IS THE RADIATION THERAPY EXPERIENCE THAT IS RELATED TO THE TRIAL IS GOING TO BE IMPORTANT, AND, YOU KNOW, WE ARE SEEING AT OHIO STATE WHERE I AM VERY FREQUENTLY THAT THE PATIENTS TRY TO GET THE INFORMATION FROM ALL THE DIFFERENT PLACES AND RESOURCES, AND I THINK HELPING TO ADD KIND OF A PORTFOLIO OF LET'S SAY VALIDATED SMEELD BASED INFORMATION THAT CAN BE ADJUNCT OR CAN BE REFERRED TO IN SOCIAL MEDIA WILL BE VERY IMPORTANT FOR THE CLINICAL TRIAL NETWORK. >> Wendy Lawton: I THINK THAT'S A GREAT IDEA. I WOULD BE INTERESTED TO FIND OUT WHAT PATIENTS REALLY WANT TO KNOW, BECAUSE I THINK YOU'RE RIGHT, LIKE IF I'M GETTING A SCAN, WHAT DOES THAT MEAN? TISSUE SAMPLING, WHAT DOES THAT MEAN, WHAT ARE YOU GOING TO DO WITH THE TISSUE SAMPLES? SO YEAH, I THINK THERE'S A LOT OF QUESTIONS THAT PATIENTS MIGHT HAVE ABOUT ALL OF THE DIFFERENT COMPONENTS, AND AGAIN, WE OFTEN WRAP THAT IN LANGUAGE THAT'S VERY DIFFICULT TO UNDERSTAND. >> THANKS TO ALL OF YOU, AND WENDY, I PARTICULARLY WANTED TO THANK YOU FOR YOUR MESSAGE ABOUT COLLABORATION AND FOR GIVING THE NC I SOME SORT OF CON CREETD IDEAS AND STEPS FOR MOVING FORWARD, PARTICULARLY BECAUSE THE MISSION OF YOUR PANEL WAS TO TALK ABOUT FUTURE CONSIDERATIONS , SO I LOVE THE IDEA OF NEXT STEPS. WHAT I WANTED TO ASK WAS IF YOU HAVE SOME SUGGESTIONS OR THOUGHTS ABOUT MOVING FORWARD IN THE ARENA OF REACHING OUT TO THE PHYSICIAN COMMUNITY. YOU TALKED A LOT ABOUT REACHING OUT TO THE PATIENTS AND THE PUBLIC, WHICH IS OBVIOUSLY INCREDIBLY IMPORTANT, BUT WE ALL KNOW THAT A PIECE OF THE PUZZLE WITH AWARENESS AND RECRUITMENT FOR CLINICAL TRIALS HAS TO DO WITH REACHING THE PHYSICIANS PARTICULARLY IN THE COMMUNITY CENTERS, COMMUNITY HOSPITALS, SO THOUGHTS ABOUT THAT, THOUGHTS FOR NCI. >> YEAH. I THINK THAT TWO FAST THINGS, I THINK THAT THE NC I HAS DONE -- >> WE CAN'T HEAR YOU. >> OH, I'M SORRY. I THINK TWO THINGS. I THINK THAT THE NCI HAS ACTUALLY JUST STARTED TO DO SOMETHING PRETTY IMPORTANT AND INTERESTING AND ACTUALLY VISUALLY SHOWING ALL OF THOSE 200 TRIALS I TALKED ABOUT, HAS ACTUALLY STARTED TO SHOW THEM IN CATEGORIES, SO HERE IS ALL THE N CI BREAST CANCER TRIALS, AND GRACE MISHKIN WHO WAS HERE YESTERDAY HAS BEEN LEADING THAT EFFORT, I THINK ALSO WITH ANDREA DENOCOF SO I THINK I WOULD LOVE TO SEE IN MY DREAMS THAT DIGITIZE IN SOME WAY AND GETTING THAT TO THE PROVIDERS, BUT MANY OF WHOM AREN'T ON SOCIAL MEDIA, AND I ACTUALLY LEARNED YESTERDAY FROM SOME OF THE FOLKS AT THE NC I THAT SOME OF OUR SITES DON'T EVEN HAVE WIFI WHERE A LOT OF OUR NCI STAFF WORK. SO I THINK, YOU KNOW, I DON'T KNOW LIKE WHAT THAT WOULD ACTUALLY LOOK LIKE, BUT I THINK THERE'S SOME INTERESTING DIGITAL TOOLS AS WELL AS SOME SOCIAL MEDIA CHANNELS WE COULD ESHT REACH OUT TO PROVIDERS ON OUR EXISTING CHANNELS OR MAYBE WE HAVE A PUBLIC CHANNEL AND MAYBE WE HAVE A PRIEFLT OR A PHYSICIAN -FOCUSED CHANNEL. I THINK THOSE ARE REALLY IMPORTANT THINGS TO START THINKING ABOUT. SO THAT'S JUST SOME OF MY IDEAS. AND I THINK THAT HONESTLY, PLAIN LANGUAGE WILL HELP PROVIDERS. I THINK THAT THAT'S A DIRTY SECRET, BUT I THINK THAT THERE'S ACTUAL A LOT OF PHYSICIANS AND A LOT OF SITE STAFF WHO ALSO REALLY AREN'T INTERESTED IN FIVE SYLLABLE DRUG NAMES AND ALL OF OUR JAZZ HANDS AND OUR ACRONYMS, IT'S LIKE, YOU KNOW, PEOPLE ARE BUSY AND WE'VE HEARD THAT ALSO IN PRESENTATIONS OVER AND OVER AGAIN, AND WHAT THAT MEANS IS THAT THINGS NEED TO BE SCANNABLE AND THEY NEED TO BE IN PLAIN LANGUAGE, SO AGAIN, I THINK THAT EVEN DOING THINGS IN PLAIN LANGUAGE MIGHT ALSO HELP PHYSICIANS AND OTHER RESEARCH SUPPORT STAFF. >> SO MY QUESTION IS HAD HOW -- SO MY QUELL IS HOW DO WE WILL DRIVE PATIENTS TO THE CONTENT? WE CAN FILL THE LIBRARY OF CONGRESS WITH INFORMATION AND EDUCATIONAL MATERIAL, BUT THE FACT IS WHEN MY BEST FRIEND GETS DIAGNOSED WITH STAGE 4GL PI AL B LASTOMA THE FIRST THING I'M DOING IS THROUGH TEARS TYPING INTO GOOGLE TRYING TO FIND OUT THE FIRST 20 THINGS THAT COME UP ARE PUBMED CENTRAL ARTICLES THAT I HAVE NO CHANCE TO UNDERSTAND. I MIGHT FIND SOME FORUMS DOWN LOWER THAT MAY HAVE PEOPLE TALKING ABOUT THESE THINGS. PERSONALLY I'M BUILT NOT GOING TO TWITTER OR TRY TO FIND SOMETHING IN FACEBOOK. MY FRIEND ISN'T POSTING TO FACEBOOK BECAUSE AT THIS POINT HE DOESN'T WANT ANYONE TO KNOW, AND IF HE GOES TO ONE OF THE NC I SITES, MAYBE HE KNOWS ABOUT IT , MAYBE HE DOESN'T, BUT CLINICAL TRIALS.GOV IF HE EVEN KNOWS TO LOOK FOR CLINICAL TRIALS, TRIES TO BE EVERYTHING TO EVERYONE, YOU CAN'T FIND ANYTHING. EVEN WHEN I GO TO THE COOPERATIVE GROUP SITES, I CAN'T FIND ANYTHING ON THERE, I CAN BARELY FIND WHEN THEIR MEETINGS ARE. AND I BELONG TO ONE OF THE COOPERATIVE GROUPS. SO HOW DO YOU GET -- LET'S SALE WE'RE DOING MICROTARGETTING FOR TIRING. -- FOR ADVERTISING. SO I SEARCH FOR STAGE 4 GLIOBLASTOMA ON GOOGLE AND SOME AD COMES UP. I DON'T TRUST THAT AD. I'M GETTING ALL SORTS OF INFORMATION FROM EVERYONE TRYING TO SELL ME STUFF FROM WIGS TO WHATEVER POT TO HELP HIM WITH HIS PAIN, YOU KNOW, I DON'T KNOW THAT I'M GOING TO PAY MUCH ATTENTION TO THOSE ADS. SO HOW DO WE GET THE INFORMATION TO THE PATIENTS AND THEIR FAMILY AND THEIR FRIENDS SO THAT THEY CAN HELP AND DO THAT EASILY INSTEAD OF ME SPENDING THREE DAYS GOING THROUGH ALL THIS STUFF TRYING TO FIND SOMETHING MEANINGFUL AND THEN TRYING TO GET ON TO A FORUM SOMEPLACE OR A FACEBOOK PAGE AND INTERACTING AND GAINING TRUST THERE AND BECOMING PART OF THAT COMMUNITY SO THAT I CAN FIND -- >> SORRY, I DON'T WANT TO INTERRUPT, BUT WE'RE RETURNING OUT OF TIME AND WE WANT TO GET ONE LAST QUESTION IN. BUT IF YOU WANT TO BRIEFLY ANSWER THE LAST QUESTION. SORRY TO INTERRUPT. >> I WOULD JUST SAY I THINK SEARCH ENGINE OMENT MYIZATION WE ALL NEED TO BE SMARTDER WITH THAT -- OPTIMIZATION WE ALL NEED TO BE SMARTER WITH THAT. EVERYBODY GOES TO GOOGLE. NOT EVERYBODY IS ON FACEBOOK RS NOT EVERYBODY IS ON TWITTER, THAT'S WHY I THINK SEARCH TOOLS ARE REALLY IMPORTANT. AND YOU KNOW NC I NEEDS TO GET SMARTER ABOUT T I NEED TO GET SMARTER ABOUT IT, TO MAKE SURE THAT THAT GOOD CONTENT. THE NCI HAS AMADING CONTENT ON THEIR SITE. I DIDN'T CREATE MUCH AT SOME OF THE CONTENT ON THE PATIENT RESOURCES PART OF OUR SITE BECAUSE I USED VIDEOS AND INFORMATION THAT THE NCI HAS ALREADY CREATED. IT'S GREAT. BUT YOU'VE GOT TO FIND T RIGHT? LIKE YOU HAVE TO KNOW ABOUT IT. THAT'S THE OTHER REASON WHY I THINK ANOTHER, IF WE COULD RAIRPZ THE PROFILE AGAIN I'M A HUGE FAN OF THE NC I CONTACTS ON OUR 18-800 DID-4 CANCER, IF YOUR FRIEND HAS A PROBLEM AR A QUESTION, I WAS JUST DYING NOALSD, OR NOW I'M IN TREATMENT OR MY MOM HAS T I DON'T KNOW WHAT TO DO, I HEARD ABOUT THIS CLINICAL TRIAL, I DON'T UNDERSTAND T IS IT EVEN NEAR ME, AM I EVEN LIKE ELIGIBLE, THOSE FOLKS ARE TRAINED, THERE'S A STAFF OF 44 SITTING UP IN SEATTLE AND THEY CAN HELP AND AGAIN AND AGAIN I THINK PEOPLE WANT THAT HUMAN CONNECTION, THEY WANT TO TALK TO SOMEBODY. SO I THINK SEARCH ENGINES AND THE NCI CONTACT CENTER I THINK WOULD BE A SMART INVESTMENT. >> AND I WOULDN'T GIVE UP ON SOCIAL MEDIA. THERE ARE A LOT OF PATIENTS THAT ARE ALSO ABLE TO HELP YOU. IF YOU'RE NOT COMFORTABLE AND THEY'RE MAYBE ONE OF YOUR FRIENDS OR YOUR FRIEND'S FRIENDS CAN GO FIND INFORMATION. >> [AWAY FROM A MICROPHONE] >> I'M PART OF A COOPERATIVE GROUP AT NIH. WHEN IT COMES TO MY FRIEND, IN FACT MY FRIENDS COME TO ME SPECIFICALLY BECAUSE I KNOW THAT THESE RESOURCES EXIST. THE PROBLEM IS THEY DON'T KNOW. THEY DON'T KNOW SOMEONE, HOW DO THEY FIND OUT? SO RIGHT NOW I'M THE CONDUIT. I AM THE SOCIAL MEDIA. THEY PM ME. LY I'VE JUST BEEN DYING NOASTLES SED WITH STAGE 4 GLIOBLASTOMA, WHAT DO I DO? I SAY THESE ARE THE STUDIES AVAILABLE, TALK TO YOUR DOCTOR ABOUT THIS. >> YOU KNOW, WE CAN HAVE MAYBE YOU CAN TAKE UP THE CONVERSATION WITH THE PANEL DURING LUNCH BREAK SHES I THINK THIS IS A GREAT CONVERSATION. PROBABLY NEEDS A LITTLE MORE TIME THAN WE HAVE. ANDREA, DID YOU WANT TO ASK THE LAST QUESTION? >> YES. ANDREA DENOCOF FROM NCI. I ALWAYS LOVE THINKING ABOUT NEXT STEPS AND HOW WE CAN OPERATIONALIZE ALL THIS EXCITING WORK WE'RE DOING. WE CAN'T DO EVERYTHING ALL AT THE SAME TIME, SO THINK ABOUT HOW WE CAN PRIORITIZE AND COULD WE THINK OF A FEW SPECIFIC PROJECTS THAT COULD REALLY WE WORK ESPECIALLY WITHIN THE NCTN AS A PROJECT, FOR EXAMPLE, WE DON'T DO WELL COLLABORATING ON ADOLESCENT AND YOUNG ADULT TRIALS. THE PEDIATRIC GROUP GETS STUCK IN THE CHILDREN'S AREA, THE ADULTS GET STUCK IN THE ADULT AREA AND WE REALLY NEED TO COLLABORATE TOGETHER AND WITH THE DATA THAT WAS PRESENTED ON GETTING TEENS ON SOCIAL NETWORK, HOW COULD WE SOMEHOW GET THE ADULTS AND PEDIATRIC PEOPLE MORE TOGETHER, I KNOW THERE'S A BIG EFFORT, BUT TO REALLY JUMP START IT AND MAYBE PICK LIKE THE UP COMING SWOG COG STUDY TO PILOT SOMETHING, YOU KNOW, THAT'S JUST ONE EXAMPLE. I KNOW EGOG HAS A MULTIPLE MYELOMA STUDY IN THE WORK AND WITH THE INCIDENCE OF AFRICAN AMERICANS IN THE WORK AND KATASH A DAVIS IS HERE WHO DID A GREAT JOB IN THINKING ABOUT THAT , HOW MIGHT WE USE A TRIAL LIKE THAT TO FIGURE OUT HOW BESES TO ENHANCE A-- BEST TO ENHANCE AWARENESS AMONG AFRICAN AMERICANS AND BLACKS ABOUT THEIR RISK AND DO A PILOT THERE OR WITH OLDER AMERICANS, THERE'S A COUPLE OF STUDIES I'VE SEEN THAT ARE TARGETING OLDER ADULTS WITH I FORGET, LEUKEMIA, BUT ANYHOW, AS TRIALS ARE BUBBLING UP, HOW WERE MIGHT WE USE THEM AS OPPORTUNITIES TO REALLY STUDY THIS IN A THOUGHTFUL WAY BECAUSE I DO THINK EVERYBODY FEELS WE'RE TOO BUSY TO DO T BUT HOW CAN WE PUT OUR TOES IN THE WATER AND DO SOME TESTING OF MESSAGES, TESTING OF AUDIENCES, EVEN TESTING WORKING TOGETHER. SO I JUST THROW THAT OUT FOR THOUGHT AND TO CHALLENGE US TO TRY TO COME UP WITH THINGS WE CAN TRY. THANKS. >> SO JUST REAL QUICK, I THINK THAT YOU COULD VERY EASILY CROWDSOURCE PATIENTS FROM WITHIN THE COMMUNITY THAT YOU'RE TRYING TO REACH, WHETHER IT'S A SPECIFIC DISEASE COMMUNITY OR IF IT'S A MARGINALIZED COMMUNITY THAT'S NOT NECESSARILY HAD THEIR VOICE REPRESENTED, THEY'RE THERE AND IF YOU ASK THEM TO HELP FROM THE VERY BEGINNING OF YOUR TRIAL DESIGN, THEN THEY'LL GUIDE YOU. THEY WILL WILL. THEY'LL HELP YOU WHERE THE MESSAGING RIGHT OFF THE BAT AND IT'S AS EASY AS ONE TWEET AND/OR ONE FACEBOOK POST AND YOU'LL FIND THEM. THERE WERE KEY INFLUENCERS THAT ARE SCANNING THE AREAS FOR THEIR PARTICULAR CANCER AND THEY'LL SAY OH, WAIT, THEY'RE INTERESTED AND THEY'LL GO AND FIND YOU 5078 MORE PEOPLE THAT WILL JUMP RIGHT ON BOARD. AND THEY'LL GO AND FIND YOU 50 MORE PEOPLE THAT WILL JUMP RIGHT ON BOARD. >> GREAT. I WANT TO THANK THE PANEL AGAIN FOR THEIR TALKS AND THIS GREAT CONVERSATION. [APPLAUSE]