>>> GOOD MORNING AND WELCOME TO OUR WORKSHOP ON BASIC MECHANISMS PROCESSES, THEIR INFLUENCE OR HINDER THE SELF-MANAGEMENT PROCESS. WE ARE A TRANS-NIH INITIATIVE THAT TRIES TO FILL THE GAPS AND BRIDGE THE INSTITUTES. AND UNDER NINR'S LEADERSHIP, WE HAVE MADE TREMENDOUS STRIDES IN UNDERSTANDING HOW, WHY, PEOPLE CAN MANAGE THEIR CHRONIC CONDITIONS BETTER. WHAT WE KNOW LESS ABOUT ARE THOSE INTERNAL MECHANISMS UNDER THE SKIN, WHETHER THEY ARE PSYCHOLOGICAL PROCESS, GROUP TIES AND BIOMARKERS THAT ARE LINKED TO ALL OF THOSE BEHAVIORS, AND SO, COMING TOGETHER TO UNDERSTAND HOW THOSE PROCESSES HAPPEN. TO LOOK FOR A RESEARCH AGENDA FOR THE FUTURE. OUR NEW DIRECTOR, BILL RILEY, VERY INTERESTED IN THIS MEETING. UNFORTUNATELY -- THE GOOD NEWS IS THAT HE HAS GONE FROM OUR ACTING DIRECT ONOR TO OUR APPOINTED DIRECTOR. AND ONCE THAT HAPPENED, HIS CALENDAR FILLED UP AND HE WAS TAKEN OF THE COUNTRY ON AGENCY BUSINESS. SO HE SENDS HIS REGRETS. AND MY DEPUTY DIRECTOR SENDS HIS REGRETS FROM HIS CAR ON THE CAPITAL BELTWAY. SO, BUT I HAVE AN EVEN BETTER GUEST TO INTRODUCE AFTER I TELL YOU, ONE, THAT DEMAND AND INTEREST IN THIS WORKSHOP IS, COMES FROM ACROSS THE COUNTRY, AND ACROSS THE WORLD. AND SO, WE ARE VIDEO CASTING LIVE. AND I WILL BE TWEETING ALL DAY. YOU ARE WELCOME TO DO SO AS WELL. IT'S ON THE COVER OF YOUR MEETING FOLDER. IF YOU'RE SO INCLINED DURING LUNCH, YOU'RE WELCOME TO TAKE A BREAK BECAUSE YOU WILL BE TALKING ALL MORNING. BUT IF YOU LIKE, I WILL TURN TO OUR TWITTER ACCOUNT AND ENTERTAIN QUESTIONS FROM PEOPLE WHO ARE FOLLOWING ALONG. FIRST WE HAVE A SURPRISED GUEST, DR. PATRICIA GRADY THE DIRECTOR OF THE NATIONAL INSTITUTA NURSING RESEARCH. PAT, WOULD YOU MIND COMING UP AND WELCOMING EVERYONE? [ APPLAUSE ] >> THANK YOU VERY MUCH, BILL. IT IS MY PLEASURE TO BE HERE THIS MORNING AS BILL SAID. THIS IS AN AREA WE HAVE A GREAT DEAL OF INTEREST IN AND HAVE DONE PIONEERING WORK IN FROM SELF-MANAGEMENT TEAMS HELPING TEAMS MANAGE THEIR DIABETES THROUGHOUT THEIR LIFE, TO ELDER HISPANIC WOMEN GAUGING IN SELF-MANAGEMENT FOR DIFFICULTIES IN PAIN AND MOBILITY LIMITATIONS WITH ARTHRITIS. AND SO, WE HAVE A WIDE RANGE OF INTERESTING RESEARCH IN THIS AREA. BUT WE ALSO ARE EXCITED ABOUT IT BECAUSE, AS YOU LOOK AT OUR POPULATION ACROSS THE COUNTRY AND ACROSS THE GLOBE, PEOPLE ARE LIVING LONGER TO DEVELOP CHRONIC ILLNESSES BUT THEY ARE ALSO HEALTHIER DESPITE THAT AND THEY ARE VERY INFORMED AND WANT TO HELP MANAGE THESE CHRONIC ILLNESSES THEY HAVE. AND LIVE VERY FULL, HIGH QUALITY LIVES. SO, REALLY, WE ARE WHERE WE CAN BE THE MOST HELP IS TO HELP PEOPLE TO BE ABLE TO MANAGE THEIR OWN ISSUES. AND WHEN WE LOOK AT THE WONDERFUL RESEARCH THAT IS BEING DONE ACROSS THE NIH AND ACROSS THE COUNTRY, AND LOOK AT THE RESULTS THAT PROMISE SO MUCH FOR PEOPLE TO LIVE A BETTER LIFE, THOSE RESULTS WILL REALLY ONLY BE MEANINGFUL IF THEY ARE INCORPORATED BY PEOPLE INTO THEIR LIFESTYLES. AND SO, THAT REALLY IS WHAT SELF-MANAGEMENT IS ABOUT LARGELY. SO WE ARE EXCITED. I'M LOOKING FORWARD -- THE PROGRAM TODAY LOOKS OUTSTANDING. I'M LOOKING FORWARD TO HEAR AS MUCH OF IT AS POSSIBLE IN PERSON OR LIKE MANY OF YOU ON THE PHONE, MAYBE JOINING ME LATER THIS AFTERNOON. BUT, REST ASSURED, I WILL BE HEARING ALL OF THAT AND I'M LOOKING FORWARD TO IT AS I KNOW ALL OF YOU HERE IN THE ROOM AND ACROSS THE COUNTRY AND EVEN THE GLOBE, ARE AS WELL. SO THANK YOU VERY MUCH. I'M GOING LISTEN AND LEARN. [ APPLAUSE ] >> SO GOOD MORNING, EVERYBODY. I'M DONNA McCLOSKEY, THE PROGRAM DIRECTOR AT NINR IN THE SELF-MANAGEMENT BRANCH. AND I'M HONORED TO BE HERE AND PROVIDE YOU WITH A SHORT WELCOME AND SET THE STAGE FOR TODAY'S ACTIVITIES. SO, IN LOOKING AT SELF-MANAGEMENT, YOU MIGHT THINK ABOUT -- I'M NOT USED TO THIS SLIDE THING HERE. YOU CAN READ IT HERE AND THEN ALSO SEE A SLIDE, YOUR NEXT SLIDE, SO IT'S CONFUSING ME. IN LOOKING AT SELF-MANAGEMENT, YOU MIGHT THINK ABOUT HOW IMPORTANT YOUR HEALTH IS TO YOU. WE ALL HAVE DIFFERENT DEGREES OF SELF-MANAGEMENT IF YOU THINK ABOUT IT AND YOU BEEN YOUR FAMILIES. AS A RESEARCHER AND CLINICIAN, I ALWAYS ASK MYSELF, WHY IS THERE PEOPLE WHO ARE COMMITTED TO SELF-MANAGEMENT AND ARE BETTER AT IT THAN OTHERS? WHAT IS THE TRIGGER? WHAT IS THE DRIVE? WHAT IS THE MAKEUP OF THESE INDIVIDUALS? AND THE SUCCESSFUL SELF MANAGERS? SELF MANAGE CEMETERY A DYNAMIC PROCESS IN WHICH INDIVIDUALS IN CONJUNCTION WITH FAMILY AND OTHERS MANAGE THE HEALTH CONDITIONS. AND AT NINR, ALONG WITH OTHER ICs AT NIH, WE SUPPORT SELF MANAGEMENT AND SUPPORT THESE EFFORTS. THESE THAT YOU SEE HERE ON THE SLIDE COVER ADHERENCE, MANAGEMENT OF CHRONIC CONDITIONS, SOCIAL AND BEHAVIORAL RESEARCH AND HEALTH TOOLS IN PROMOTING SELF-MANAGEMENT. MOST FOCUS ON CHRONIC HEALTH CONDITIONS WITHIN THE CONTEXT OF IMPROVED HEALTH OUTCOMES AND OVERALL IMPROVED QUALITY OF LIFE. WE'LL ALL AGREE THAT CHRONICIL SENTENCE A MAJOR HEALTH PROBLEM. CHRONIC DISEASES ARE PROLONGED AND HAVE A FLUNKATING COURSE AND RARELY CURED COMPLETELY. THINK ABOUT INDIVIDUALS WHO HAVE MULTIPLE CHRONIC CONDITIONS. THE GOAL IN MANAGING CHRONICIL SENTENCE TO CONTROL THE SYMPTOMS PREVENT WORSENING OF THEIR ILLNESS. INDIVIDUALS MUST PERFORM MOST IF NOT ALL OF THE SELF-MANAGEMENT TASKS. AND THE PATIENTS WHO MANAGE CHRONIC CONDITIONS ARE AT THE CRUX OF MULTIPLE SOCIAL, HUMAN NETWORKS INCLUDING FAMILIES AND OTHER SOCIAL SUPPORTS, INCLUDING PHARMACIES. BASIC INDIVIDUAL MECHANISMS AND PROCESSES INCLUDE COGNITION, EMOTION, LANGUAGE, MEMORY AND MOTIVATION. ALSO PERCEPTION, INFORMATION PROCESSING AND PERSONALITY TYPES AMONG MANY OTHERS. UNDERSTANDING THESE HUMAN ASPECTS, AND WILL COLLECTIVELY, CAN EMPOWER RESEARCHERS, PARTICIPANTS, HEALTH CARE PROVIDERS, CLINICIANS, WITH INTERCEPTION CURRICULA THAT CAN PERSONALIZE INTERVENTIONS RATHER THAN TO THE QUALITIES ASSOCIATED WITH THE SOCIODEMOGRAPHIC CATEGORIES I MENTIONED. TODAY, WE ARE GOING TO EXPLORE WHAT ARE THE BASIC MECHANISMS THAT INFLUENCE OR IMPEDE SELF-MANAGEMENT. WE ARE GOING TO HEAR ABOUT DIFFERENT CONTEXT IN SOCIAL NETWORKS, COGNITION, BIOMARKERS, CAREGIVERS, THEORY AND MEASUREMENT. I'M SO EXCITED TO HEAR ABOUT THESE ASPECTS FROM THE LEADING EXPERTS IN THE FIELD. SO, WITHOUT FURTHER ADIEU, WE'LL GET OUR FIRST SPEAKER UP HERE. DR. RONALD HICKMAN FROM CASE WESTERN. AND WE HAVE PROVIDED YOU WITH BIOS. SO IF YOU WOULD LIKE TO SAY A LITTLE BIT ABOUT YOURSELF, PLEASE DO SO. >> GOOD MORNING. NYE NAME IS DR. RONALD HICKMAN FROM CASE HICKMAN WHERE I'M ON FACULTY AND ASSOCIATE PROFESSOR IN THE SCHOOL OF NURSING. MY BACKGROUND AS A CLINICIAN, AN ACUTE-CARE NURSE PRACTITIONERS IN THE DEPARTMENT OF ANESTHESIOLOGY AT THE CASE MEDICAL CENTER WHERE I PROVIDE CARE TO CRITICALLY ILL PATIENCE AND THEIR FAMILY. WHICH PROVIDES A GREAT CONTEXT FOR MY RESEARCH. SO TODAY ITCHES ASKED TO SPEAK ABOUT THE PERSONAL STRENGTH AND SOCIAL CONTEXT AND IN THIS PRESENTATION, I HOPE TO HIGHLIGHT THE NEUROLOGICAL BASIS OF A PERSONAL STRENGTH REFERRED TO AS DISCENTERRING AND HOW A WEARABLE EHEALTH INTERVENTION FOR SELF-MANAGEMENT CAN ENHANCE DECENTERING ACROSS THE SOCIAL CONTEXT. BEFORE I PROCEED, I'D LIKE TO ACKNOWLEDGE THE GENEROUS SUPPORT FROM THE NATIONAL INSTITUTE OF NURSING RESEARCH. WE HAVE A P30 AWARD THAT IS FOCUSED ON THE BRAIN AND BEHAVIOR CONNECTIONS IN SELF-MANAGEMENT. I ALSO WAS A RECIPIENT OF AN R15 AWARD AND NEWLY AWARDED RO1 FOCUSED ON END OF LIFE DECISION MAKING AND RECEIVE SUPPORT FROM THE NATIONAL CENTER FOR ADVANCING TRANSLATIONAL SCIENCES AND MY CURRENT FUNDING FROM THE ROBERT WOOD JOHNSON FOUNDATION. SO, MY OBJECTIVES HERE ARE 3-FOLD. FIRST I'D LIKE TO PROVIDE YOU A DESCRIPTION OF FAMILY CAREGIVERS, ICU PATIENCE AND WHY THIS IS AN AT RISK POPULATION FOR EARLY TERMINATION OF SELF-MANAGEMENT BEHAVIORS. AND THEN I'D LIKE TO MAYBE HAVE A DISCUSSION ABOUT BRAIN SCIENCE AND SELF-MANAGEMENT AND PARTICULAR GAPS IN OUR UNDERSTANDING OF WHAT BRAIN ACTIVITY AND HOW IT CAN IMPEDE OR FACILITATE SELF-MANAGEMENT AND LASTLY, I'D LIKE TO TALK ABOUT A NEW PROJECT THAT I'M WORKING ON WITH COLLABORATORS THAT HIGHLIGHTS THE TOPIC OF PERSONAL STRENGTHS AND CONTEXT, TARGETING A NEW MECHANISM REFERRED TO AS DECENTERING. MY FIRST OBJECT SIEVE TO PAINT THE LANDSCAPE AND MY PROGRAM OF RESEARCH IS AIMED AT LEVERAGING THE STRENGTHS OF FAMILY MEMBERS ACROSS SOCIAL CONTEXT. MOST OF MY WORK HAS FOCUSED ON DEVELOPMENT OF INTERVENTIONS AND RESOURCES TO HELP FAMILY MEMBERS OF THE CRITICALLY ILL ENHANCE THEIR SELF-MANAGEMENT, DECISION-MAKING AND ALSO THEIR CARE GIVING BEHAVIORS. NOW FOR A SIGNIFICANT PORTION OF THESE FAMILY MEMBERS OF CRITICALLY ILL PATIENTS, THE PATIENTS IN ILLNESS PRECLUDES THE PATIENT FROM BEING A CONTRIBUTING MEMBER IN THE SHARED DECISION-MAKING PROCESS AND SO FAMILY MEMBERS ABRUPTLY ASSUME NOT ONLY THEIR DECISION-MAKING ROLE BUT A CARE GIVING ROLE. THESE FAMILY MEMBERS ARE THRUST INTO THE CAREGIVER ROLE OFTENTIMES FOR THE FIRST TIME AND AS A RESULT OF THIS NEW ROLE OR THE COMBINATION OF BEING A CAREGIVER AND A SURROGATE DECISION-MAKER, OFTENTIMES PREMATURELY TERMINATE THEIR OWN SELF-MANAGEMENT BEHAVIORS. TO ENHANCE THE SELF-MANAGEMENT AND THE DETRIMENTAL AFFECTS OF CARE GIVING, MY SCHPEEL I TRIED TO LEVERAGE THE PERSONAL STRENGTHS OF DISCENTERRING THROUGH THE EXPOSURE OF MINDFULNESS BASED MEDITATION AND HEALTH PROMOTION INTERVENTIONS DELIVERED ON A WEARABLE EHEALTH PLATFORM. SO BEFORE I JUMP INTO TALKING ABOUT THE PROJECT ITSELF, I'D LIKE TO JUST TALK ABOUT WHY THIS PARTICULAR POPULATION IS ONE TO BE NOTEWORTHY. ACROSS THE UNITED STATES, WE ARE SEEING INCREASING NUMBERS OF OLDER AMERICANS WITH SEVERE PHYSICAL AND COGNITIVE DISABILITIES. WE ALSO ARE SEEING A PROPORTIONAL INCREASE IN THE USAGE OF CRITICAL CARE SERVICES BY OLDER AMERICANS AS WELL. AND THIS EXPOSES POTENTIALLY MORE PATIENCE AND FAMILIES TO THE LIFE SUSTAINING KIIR DELIVERED IN THE ICU. -- CARE DELIVERED IN THE ICU. THIS SLIDE HIGHLIGHTS THE WORK OF AN EPIDEMIOLOGIST AND IN HER WORK, IT SHOWS THAT AMONG OLDER ADULTS, THE NUMBERS OF THOSE PATIENTS RECEIVING LIFE SUSTAINING CARE IN THE ICS LIKELY TO DOUBLE TO AFFECT MORE THAN 600,000 INDIVIDUALS EACH YEAR BY THE YEAR 2020. AND THEN FOR THOSE WHO NAY NOT EVEN BE AWARE OF WHAT IT IS LIKE TO EXPERIENCE AN EPISODE OF CRITICAL ILLNESS, 1-5 AMERICANS ARE LIKELY TO DIE IN AN ICU DURING AN EPISODE OF CRIMINAL CALL ILLNESS. AND FOR PATIENTS -- CRITICAL ILLNESS -- FOR PATIENTS WHO REQUIRE MECHANICAL VENTILATION, 50% OF THOSE PATIENTS WILL DIE IN A YEAR. NOW THIS IS A SLIDE THAT I LIKE TO CALL CRITICAL ILLNESS LIKE THE OTHER C WORD, LIKE CANCER. IF WE COMPARE THE ONE YEAR MORTALITY RATE ASSOCIATED WITH CRITICAL ILLNESS COMPARED TO COMMON CANCERS, YOU CAN NOTE THE CRITICAL ILLNESS IS ASSOCIATED WITH HIGHER ONE-YEAR MORTALITY RATES. AND IF WE LOOK AT THE MORTALITY RATES, THEY EXCEED MELANOMA, PROSTATE CANCER, BREAST, COAL RECOLLECTAL AND LUNG CANCER. AND SO THIS IS JUST REALLY HIGHLIGHTS FOR MANY PATIENCE AND FAMILIES WHO HAVE THIS CONTEXT, IT'S OFTEN MARCKING THE ONSET OF END-OF-LIFE CARE AND THE NEED FOR FAMILIES TO BE ENGAGED IN THE COORDINATION OF CARE. 3-4 OF CRITICALLY ILL PATIENTS REQUIRE A CAREGIVER OR UNABLE TO MAKE DECISIONS FOR THEMSELVES. IS IN THE ICU OR TRANSFER ORHER DISCHARGE OUT OF THE ICU INTO A INSTITUTIONAL SETTING SUCH AS A SKILLED NURSING FACILITY OR A LONG TERM ACUTE-CARE FACILITY, NEARLY ALL ICU PATIENTS HAD THREE DAYS OR MORE STAY IN ICU WILL REQUIRE A SURROGATE OR CAREGIVER. WHAT IS INTERESTING IS THAT OFTENTIMES WHEN WE INTERACT WITH PATIENCE AND FAMILIES, THEY FOR SYSTEMS OF CRISIS. AND THEY ARE LOOKING FOR HELP. OFTENTIMES ASSUMING THE CAREGIVER ROLE AND THE DECISION-MAKING VOCAL EXTREME STRAIN OR BURD KNOW ON THEIR PSYCHE. THAT OFTENTIMES THEY ARE DEALING WITH RECURRENT EPISODES OF HOSPITAL ACQUIRED INFECTIONS AND ROLLERCOASTER AND UPS AND DOWNS OF RECOVERY AND LOSSES AGAIN AND IN THE ANTICIPATION OF THE EVENTUAL PATIENT'S DEATH. FAMILIES ARE OFTENTIMES REPORTING UNMET NEEDS FROM CLINICIANS. THOSE THINGS ARE COMMUNICATION, PERCEIVED LACK OF EMOTIONAL SUPPORT A DESIRE TO BE NEAR THAT PATIENT AT ALL TIMES. BUT THE SYMPTOMS THAT THESE CAREGIVERS AND FAMILY MEMBERS EXPOSED TO ARE RELATED BACK TO IMPAIRMENTS AND EMOTIONAL REGULATORY PROCESS WHICH OFTENTIMES MAKE IT DIFFICULT FOR THEM TO UNDERSTAND AND PROCESS INFORMATION. THESE IMPAIRMENTS TO EMOTION AND REGULATION AND INFORMATION PROCESSING CAN LEAD TO IMPULSIVE DECISION-MAKING, UNCERTAINTY ABOUT HOW TO PLAN AND CARE ACCORDINGLY AND THE TERMINATION OF SELF-MANAGEMENT BEHAVIORS. MY SECOND OBJECTIVE NOW THAT PAINTED THE PICTURE ABOUT WHY THESE CAREGIVERS ARE POTENTIALLY AT RISK FOR VULNERABLE POPULATIONS IS TO REALLY UNDERSTAND THE LINKAGE BETWEEN BRAIN SCIENCE AND SELF-MANAGEMENT. WHEN WE LOOK AT OUR EXISTING MODELS, THEY ARE PREDOMINANTLY BEHAVIORAL IN NATURE AND OFTEN DO NOT ADDRESS THE BASIC LYING CALL PROCESS UNDERLYING SELF-MANAGEMENT SUCH AS BRAIN ACTIVITY. DESPITE THE FACT THAT MANY OF OUR SELF-MANAGEMENT PROCESSES ARE COGNITIVE IN NATURE SUCH AS MOTIVATION OR DECISION-MAKING, MANY OF THESE THINGS ARE COGNITIVE MECHANISMS THAT HAVE BEEN REALLY INVESTIGATED, MINIMALLY INVESTIGATED TO UNDERSTAND THE UNDERLYING BIOLOGIC PROCESS. WITH THE ADVANCEMENT OF TECHNOLOGY, OR F MRIs, WE HAVE A NEW OPPORTUNITY TO IDENTIFY THE NEUROBIOLOGICAL MECHANISM THAT UNDERLIE THE ACQUISITION OF NEW INFORMATION, HOW THAT INFORMATION IS PROCESSED AND HOW IT IS USED TO NOT ONLY INITIATE BUT SUSTAIN SELF-MANAGEMENT BEHAVIORS. RESEARCH IN THE AREA OF COGNITIVE PROCESSING HAS IDENTIFIED TWO BROAD CORTICAL NETWORKS. THE FIRST THE TASK POSITIVE NETWORK, INVOLVED WITH USING SKILLS, KNOWLEDGE AND SELF MONITORING. FOR PROBLEM-SOLVING AND GOAL-DIRECTED ACTION. TO ME THAT REPRESENTS MARCH OF THE BEHAVIORS OF SELF-MANAGEMENT. AND THE SECOND DIMENSION OR CORTICAL NETWORK IS THE DEFAULT MODE NETWORK FOCUSING ON EMOTION MANAGEMENT, SELF AWARENESS AND RELATIONSHIPS. WE HAVE BEEN ABLE TO DETECT THE NEUROACTIVITY ASSOCIATED WITH THESE PARTICULAR CORTICAL NETWORKS USING FMRI. ADDITIONALLY, THESE TWO BROAD NETWORKS TEND TO BE ANTAGONISTIC SUCH THAT WHEN ONE NETWORK IS ACTIVATED, THE OTHER IS INHIBITED. THEREFORE I, ALONG WITH MY TEAM OF SCIENTISTS SUSPECT THE ACTIVATION OR INHIBITION OF THESE TWO CORTICAL NEURAL NETWORKS HAVE IMPORTANT IMPLICATIONS FOR SELF-MANAGEMENT SCIENCE. SINCE AN INDIVIDUAL CAN ONLY EFFICIENTLY ADOPT ONE MODE AT A GIVEN TIME. AS A RESULT, THE INITIATION AND MORE IMPORTANTLY, SUSTAINING SELF-MANAGEMENT BEHAVIORS IS LIKELY TO BE ACHIEVED WHEN THERE IS BALANCE BETWEEN THE TWO CORTICAL NEURAL NETWORKS. NOW THE FIGURE ON THIS SLIDE COMES FROM ONE OF MY COLLABORATORS, DR. ANTHONY JACK. A NEUROCOGNITIVE SCIENTIST WITH A PARTICULAR INTEREST IN IMAGING. AND HIS WORK REALLY LAYS THE FOUNDATION FOR MY TEAM WHICH IS BEING ABLE TO IDENTIFY THE UNDERLYING PROCESSES AND BRAIN ACTIVITY ASSOCIATED WITH SELF-MANAGEMENT ACTIVITIES. NOW THIS IMAGE IS AN IMAGE OF INDIVIDUALS BRAIN. AND THIS PARTICULAR PARTICIPANT WAS EXPOSED TO ONE OF DR. JACK'S COACHING INTERVENTIONS. YOU CAN SEE THAT THERE IS INCREASE IN THE BRAIN ACTIVITY AND FOR THOSE NEUROCOGNITIVE SCIENTISTS IN THE ROOM, THAT PARTICULAR BRAIN REGION IS THE VENTRAL MEDIAL PREFRONTAL CORTEX AND INTERIOR CINGULATE SHOWS SOME INCREASED ACTIVITIES. NOW DR. JACK AND I ARE POSITIVE THESE AREAS ARE ASSOCIATED WITH MOTIVATION, A COMPONENT OF THE DEFAULT MODE NETWORK. AND THAT WITH THIS WORK, ALONG WITH THE EMERGING EVIDENCE IN NEUROSCIENCES, WE ARE ABLE TO SHOW THAT SELF-MANAGEMENT INTERVENTIONS CAN INFLUENCE THE BRAIN ACTIVITY. AND THAT BLOODS TOW A MAJOR CONCEPT OF OUR CURRENT WORK, WHICH IS FOCUSED ON DECENTERING. NOW MANY OF THE FOLKS IN THIS ROOM MAY NOT BE AWARE OF DECENTERING. DECENTERING IS A METACOGNITIVE TASK THAT ENABLES INDIVIDUALS TO APPRAISE THEIR THOUGHTS AND FEELINGS AS MENTAL EVENTS A HEALTHY PSYCHOLOGICAL DETACHED PERSPECTIVE. INDIVIDUALS WHO CAN EFFECTIVELY DECENTER THEIR SOMEWHAT FEELINGS CAN DISRUPT THINKING OR RUMINATION AND EFFICIENTLY SWITCH BETWEEN THE TASK POSITIVE AND DEFAULT MODE NETWORKS. NOW FOR MY FAMILY MEMBERS OF CRITICALLY ILL PATIENTS EXPERIENCE HIGHLIGHT END STATES OF PSYCHOLOGICAL DISTRESS, THE ACTIVATION OF THEIR DEFAULT MODE NETWORKS MAY IMPOSE ANTAGONISTIC INHIBITION OF THE TASK POSITIVE NETWORK. BRAIN REGIONS RESPONSIBLE FOR PROBLEM-SOLVING AND GOAL-DIRECTED ACTION. I ALLUDED TO THAT SORT OF CONCEPTUALIZING AND SELF-MANAGEMENT. NOW THE INHIBITION OF THE TASK POSITIVE NETWORK IS LIKELY TO PREDISPOSE CAREGIVERS TO UNREGULATED STATES OF DEPRESSION OF DECENTERING MECHANISMS, DEPLETION THAT RESULTS IN PREMATURE TERMINATION OF SELF-MANAGEMENT BEHAVIORS. AND THEN, THERE IS A GROWING BODY OF EMPIRICAL EVIDENCE THAT SUPPORTS THAT MINDFUL BASED INTERVENTIONS CAN HELP INDIVIDUALS DECENTER. WHICH IS LEAD CAN TO OUR CURRENT WORKS WITH DEVELOPING A TECHNOLOGY THAT WILL USE DECENTERING AS A NEW BIOBEHAVIORAL TARGET FOR SELF-MANAGEMENT INTERVENTIONS. AND SO WE HOPE TO COUNTER THE POTENTIAL DETRIMENTAL AFFECTS OF CARE GIVING AND DYSREGULATION OF THE TASK POSITIVE AND DEFAULT MODE NETWORK BY EVALUATING THEORETICALLY DERIVED ADAPTIVE SENSOR-BASED INTERVENTION FOR CAREGIVER SELF-MANAGEMENT REFERRED TO AS, ASSIST. THIS INTERVENTION HAS TWO COMPONENTS WHICH HOPE TO ADDRESS THESE PARTICULAR CORTICAL NETWORKS BY THE DELIVERY OF A MINDFUL BASED MEDITATION TRAINING AS WELL AS DIRECTED STRATEGIES TO PROMOTE SLEEP, HYGIENE AND PHYSICAL ACTIVITY AMONG NEW CAREGIVERS OF ICU PATIENTS. WE BELIEVE THAT THE INTERVENTION WILL EXPOSE PATIENTS REALTIME ADAPTIVE INTERVENTIONS. ALL PARTICIPANTS WILL RECEIVE A DAILY DOSE OF MINDFUL BASED MEDITATION DELIVERED BY THE SAMSUNG SIM BAND, A NEW TECHNOLOGY THEY IS NOT EVEN OUT FOR COMMERCIAL USE AT THIS POINT. AND, RECEIVE DIRECTED SELF-MANAGEMENT STRATEGIES FOCUSED ON SLEEP, HYGIENE AND PHYSICAL ACTIVITY. THE ASSIST INTERVENTION IS INNOVATIVE AND THAT IT WILL CAPTURE BIOPHYSICAL DATA AND ANALYZE THE PARTICIPANT'S DATA AND DELIVER A MINDFUL BASED MEDITATION TRAINING AND HEALTH PROMOTION STRATEGY BASED ON THE PARTICIPANT'S REALTIME STATE. IT IS OUR SUPPOSITION THAT PROVIDING REALTIME ADAPTIVE AND DIRECTIVE STRATEGIES WILL HELP THESE CAREGIVERS RECOGNIZE STRATEGIES TO ADDRESS THE TASK POSITIVE, DEFAULT MODE NETWORKS LEADING TO THE INITIATION AND MAINTENANCE OF SELF-MANAGEMENT BEHAVIORS. THIS IS OUR -- THIS REPRESENTS A REALLY BUSY -- BUT IT'S OUR STEADY MODEL. THIS PARTICULAR STEADY MODEL IS A SUBPROJECT OF AN NINR-FUNDED SELF-MANAGEMENT CENTER THAT LOOKS AT BRAIN BEHAVIOR CONNECTIONS. AND ONE OF THE THINGS THAT I WANTED TO HIGHLIGHT IS WE SUPPOSE THAT DECENTERING IS A MEDIATOR IN THIS PARTICULAR MODEL, AND THAT THE OTHER COMPONENT OF MY THOUGHTS HERE IS TO FOCUS ON SOCIAL CONTEXT AND IN THIS MODEL, THE ROLE OF SOCIAL CONTEXTING IS ALSO POSITIVE AS A POTENTIAL MODERATOR. WE FEEL THAT THE ACQUISITION OF A CAREGIVER ROLL BY FAMILY MEMBERS OF PATIENTS WHO SURVIVED THE ICU COURSE IS EXPECTED TO MODERATE PERCEIVED BELIEFS OF SELF-MANAGEMENT INTERVENTION AS WELL AS WE ARE ALSO LOOKING AT FACTORS SUCH AS CAREGIVER ROLE, ENVIRONMENTAL SETTINGS, CULTURAL DETERMINANTS AND SOCIAL SUPPORT, WHICH WE KNOW ARE ALL IMPORTANT VITAL COMPONENTS TO SELF-MANAGEMENT OUTCOMES. SO IN PREPARATION FOR THIS TALK, I THOUGHT TO MYSELF, SO SUPPOSING THAT THIS INTERVENTION WORKS, THIS MODEL IS FOUND TO BE APPROPRIATE AND VALID, WHERE WOULD I ENVISION THE FUTURE OF SELF-MANAGEMENT IN 20 YEARS FROM THIS POINT? I'D ASK THAT HOPEFULLY IN 20 YEARS, WE HAVE BETTER UNDERSTANDING OF THE BIOLOGICAL AND NEUROBIOLOGICAL UNDERPINNINGS OF SELF-MANAGEMENT AND SECONDLY, I'D LIKE AS A INTERVENTIONIST, WHO IS FOCUSED ON EHEALTH AND MOBILE HEALTH, I'D LIKE TO SEE EVIDENCE-BASED EHEALTH AND MOBILE HEALTH TECHNOLOGIES OUT THERE. SO THAT IS WHERE I WOULD SEE THE VISION FOR SELF MANAGE CEMETERY CAPITALIZING ON WHAT WE KNOW TO ENHANCE LEARNING, ENHANCE THE EXPERIENCE AND SUSTAINABILITY OF SELF-MANAGEMENT BEHAVIORS AS WELL AS USING UBIQUITOUS TECHNOLOGIES. SO LASTLY, IN THIS PRESENTATION, I TRIED TO HIGHLIGHT THE ASSOCIATIONS BETWEEN NEUROBIOLOGY, PERSONAL STRENGTHS AND SOCIAL CONTEXT, AND MANY OF WHICH HAVE BEEN MINIMALLY INVESTIGATED IN THE LITERATURE. AND HOPEFULLY, AS WE LISTEN TO AND HEAR THE DISCUSSION ON FUTURE SELF-MANAGEMENT SCIENCE, I ENCOURAGE FURTHER DIALOGUE TO ASK PROVOCATIVE QUESTIONS ABOUT HOW PERSONAL STRENGTHS AND SOCIAL CONTEXT CAN BE LEVERAGED TO ENHANCE SELF-MANAGEMENT PERFORMANCE. AND THIS CONCLUDES MY PRESENTATION. THANK YOU FOR YOUR TIME. [ APPLAUSE ] >> DOES ANYONE HAVE QUESTIONS OR COMMENTS FOR RON? JEFF AND DAVID ARE EVENTS MANAGEMENT PEOPLE, TOLD ME IT IS MUCH EASIER FOR THEM TO PROCESS OR TO RECORD IF WE GO DOWN ONE SIDE OF THE ROOM AND THEN AROUND. SO, ANYONE? WELL, I'M CURES. COULD YOU GO BACK TO YOUR MODEL, THAT PARTICULARLY INTRIGUES ME AND. >> I'LL TRY TO GET IT BACK UP HERE FOR YOU. THERE WE GO. >> PERFECT. WHEN THE DISTAL OUTCOMES ARE -- OF YOUR BIO, AND NEUROLOGICAL MEASURES, CORRECT? NO, THEY ARE HERE IN DECENTERING -- >> AS A COMPONENT OF A MEETING PROCESS, THIS NEUROPROCESSING AND IN THAT PARTICULAR CONCEPT, WE HAVE NEUROPROCESSING, WHICH IS BEING OPERATIONALIZED BY BRAIN ACTIVITY USING FUNCTIONAL MRIs. WE ARE LOOKING AT THE ACTIVATION OF HPI AS WELL AS TRADITIONAL MEASURES OF COGNITIVE PROCESSING SUCH AS SELF ADVOCACY, MOTIVATION, AS DISPLAYED HERE. >> IN YOUR VISION FROM TOMORROW THROUGH THE NEXT 20 YEARS -- LET ME BACK UP. SOME OF THE DECENTERING AND OBVIOUSLY THE HEALTH STATUS CAN BE CAPTURED BY TERNAL TECHNOLOGIES. WITHIN THIS 20-YEAR HICKMAN-BASED FUTURE, WHICH ONES -- DO YOU SEE A FUTURE IN WHICH MORE OF THESE MEASURES CAN BE CAPTURED BY PERSONAL TECHNOLOGIES? AND WHICH AND/OR WHICH ONES DO YOU, IF YOU COULD ADD ONE, TWO, OR 3 IN A PRIORITY -- YOU CAN'T DO AN FMRI YOUR SMARTPHONE YET. BUT, YOU MIGHT BE ABLE TO -- YOU LAUGH. BUT IT MIGHT HAPPEN IN OUR LIFETIMES. IF YOU HAVE THE RIGHT SMARTPHONE AND APP, YOU CAN DO OR TEST SALIVA. YOU CAN CURRENTLY PEOPLE IN TREATMENT OR DRUG COURT CAN DO URINE TESTS THROUGH THEIR SMARTPHONES. SO, WHICH WOULD YOU THINK WOULD BE MOST USEFUL FOR LIVE OR PERSONAL TESTING THROUGH SMARTPHONES? IN YOUR VISION? WHAT YOU THINK WOULD GIVE YOU THE NEXT BIG BOOST? >> WOW. AS A GUY INTERESTED IN DECISION-MAKING, I WANTED TO FALL THERE BUT WE KNOW SELF-EFFICACY HAS BEEN A POWERFUL FACTOR IN PROMOTING SELF-MANAGEMENT. SO BEING ABLE TO -- REALLY TO BE ABLE TO SORT OF TEASE OUT THE PSYCHOSOCIAL MODATORS AND BE ABLE TO HAVE A BIOLOGICAL UNDERPINNING OF THEM THAT CAN BE CAPTURED BY A SENSOR WOULD BE PHENOMENAL. I KNOW THERE IS WORK TO BE DONE IN THAT AREA. I KNOW THE NIH PRESENTED MEDICINE INITIATIVE IS LOOKING TO CAPTURE SOME OF THIS IN TRYING TO HAVE THAT. SO I'D SAY SELF-EFFICACY, MAYBE MOTIVATION WOULD BE A SECONDARY ONE FOR ME AS WELL. BUT WHEN I SEE THE HICKMAN FUTURE, WHAT I SEE IS A TECHNOLOGY WHERE WE WILL BE ABLE TO USE ENVIRONMENTAL CUEING TO RAISE AWARENESS THAT MAYBE IT IS TIME TO GO TO BED OR TO PROMOTE SELF-MANAGEMENT BEHAVIORS. MAYBE EVEN UPON SEDENTARY FOR A LITTLE WHILE SO YOUR FIT BIT TELLS YOU A LITTLE BIT TO MAYBE STAND OR TAKE A FEW STEPS. BUT THAT IS THE TYPE OF QUEUING OR BEHAVIOR THAT IS OUT THERE. BEING ABLE TO CAPTURE THIS DATA AND BEING ABLE TO SEND QUEUES TO THE INDIVIDUAL TO PROMOTE AND SUSTAIN THESE BEHAVIORS. >> THANK YOU, OTHER THAN. MARVIN? >> SO THANK YOU VERY MUCH. THE QUESTION THAT KEEPS COMING IN MY MIND WHEN WE TRY TO HELP PEOPLE WHO EITHER HAVE SIGNIFICANT PSYCHOSOCIAL PROBLEMS OR MAYBE EVEN IN TENSIVE CARE, DEEP IN DESPAIR, IS HOW DO WE REALLY REACH THEM TO CHANGE BEHAVIOR? AND YOU HAVE THIS NICE LITTLE SENSOR THAT TELLS SOMEBODY YOU'RE HAVING A PROBLEM RIGHT NOW, AND THEN YOU HAVE AN INTERVENTION WHICH GIVES PEOPLE QUEUES AND I'M REALLY FASCINATED AND INTERESTED IN WHAT YOU THINK ABOUT, WHEN IS IT THAT KIND OF MORE DISTANT EHEALTH TECHNOLOGIES, SIMPLE ADVICE, WEB-BASED TYPE MESSAGES, VERSUS THAT PERSONAL TOUCH IS REALLY GOING TO BE REQUIRED? AND HOW DO WE DECIDE? I HAVEN'T SEEN A LOT OF STUDIES. BUT THAT REAL -- WHAT DOES IT REALLY TAKE TO GET PEOPLE TO CHANGE? >> IN MY POPULATION OF CAREGIVERS, 50% OF INDIVIDUALS WANT AN ELECTRONIC NEED AND THE OTHER HALF WANTS THOSE DELIVERED IN PERSON BECAUSE OF THE EMOTIONAL COMPONENT. I DON'T THINK WE WILL EVER COMPLETELY ESCAPE OR HAVE AN ISOLATED EHEALTH INTERVENTION COMPLETELY BECAUSE OF THE COACHING AND SELF-EFFICACY THAT IS NEEDED. A FACE-TO-FACE MIGHT BE BETTER. ALTHOUGH I'M GETTING SOME VERY POSITIVE RESPONSES WITH THE USE OF MY AVATAR-BASED WORK THAT CAN SIMULATE SOME OF THE COACHING. BUT WE DON'T KNOW. AND I'D LIKE TO BE ABLE TO EXPLORE THAT AND I THINK WITH SELF-MANAGEMENT SCIENCE, I THINK BEING ABLE TO LOOK AT DIFFERENT MODALITIES AND SEE WHERE TO -- FOR INSTANCE SOME PEOPLE MIGHT NEED JUST WEB-BASED. SOME PEOPLE MIGHT NEED FACE-TO-FACE. SOME PEOPLE MIGHT NEED SOMETHING SOPHISTICATED TO HELP THEM SUSTAIN THEIR SELF-MANAGEMENT BEHAVIORS. THAT'S WHERE MY WORK IS HEADING TOWARDS IS BEING ABLE TO UNDERSTAND FOR WHOM THESE TYPES OF eHEALTH INTERVENTIONS TRULY WORK FOR. THANK YOU. THE GENTLEMAN IN THE BACK. >> [ OFF MIC ] >> CORRECT. SO WE ARE SEEING AN EXPLOSION OF INTERVENTIONS THAT ARE USING THAT TYPE OF SYNERGY BETWEEN EHEALTH TECHNOLOGIES OR PLATFORMS FOR SOCIAL MEDIA COMBINED WITH THESE eHEALTH DEVICES AND PLATFORMS. I THINK THERE WAS A HAND THERE. >> [ OFF MIC ] >> TYPICALLY I WOULD SAY THE DEFAULT MODE BECAUSE OF THE STRESS COMPONENT OF IT IS OVERWHELMING, THAT NETWORK IS USED FOR EMOTIONAL MANAGEMENT PRIMARILY SO THE TASK POSITIVE MODE TYPICALLY HELPS WITH GOAL ORIENTING PROBLEM-SOLVING. SO WE WANT TO FIND SORT OF A FINE BALANCE, A FINE-TUNING OF THEM. AND YOUR COMMENT ON GIVING UP SELF-REGULATORY PROCESSES IS SOMETHING TO PAY ATTENTION TO. AND MAYBE IN THIS CASE, SINCE THESE FAMILY MEMBERS AND CAREGIVERS ARE OFTENTIMES LOOKING FOR HELP OR IN SUCH DESPAIR, IT'S OKAY. AND THAT'S WHERE THE CONTACT COMES INTO PLAY I THINK. YES, MA'AM. >> [ OFF MIC ] >> THAT'S A GREAT QUESTION. IN MY PRIOR WORK, I TRIED TO LIBERATE THE NEED FOR A PROFESSIONAL COMMISSION TO DELIVER THIS. SO, WE PROVIDE TABLETS OR PCs FOR THESE INDIVIDUALS OR PARTICIPANTS TO USE THE DEVICES AND WE WANT THE FLEXIBILITY OF HAVING THE PARTICIPANTS USE THIS WHEN THEY NEED IT THE MOST ON DEMAND. YES, MA'AM? [ OFF MIC ] -- I UNDERSTAND THAT. SO, MY QUESTION IS, HOW THE PERSON, THE CAREGIVER, GETS THIS? I MEAN, THEY ARE GIVEN THIS WHEN THEIR FAMILY MEMBER IS IN THE ICU BY SOMEONE ASSOCIATED WITH THE HOSPITAL? OR DO THEY JUST ON THEIR OWN, SEARCH IT OFF -- >> SO FOR RIGHT NOW, WITH THE PACULAR PROJECT WE ARE TALKING ABOUT WITH THE WEARABLE SENSOR, RESEARCH STAFF IS PROVIDING THIS SENSOR AND SHOWING THEM HOW TO ACCESS THIS PROGRAM. SO IT'S NOT AVAILABLE ON THE INTERNET, WEB-BASED FOR PUBLIC USE THAT THE POINT IN TIME. NO, WE HAVE NOT USED CLINICIANS TO DELIVER IT BUT OUR RESEARCH STAFF IS ACTUALLY GIVING THEM THE DEVICES AND SHOWING THEM HOW TO ACCESS THESE RESOURCES. DID THAT ANSWER THE QUESTION? >> [ OFF MIC ] >> THE SCALABILITY OF THIS IS, AS WE THINK ABOUT THE LARGE-SCALE, THIS WOULD BE MADE PUBLICLY AVAILABLE AND THAT WE TRY TO BE PLATFORM ADD NOSTIC SO CAN IT CAN GO ACROSS PLATFORMS. WEB-BASED, DOESN'T MATTER IF YOU'RE AN APPLE OR ANDROID USER. CLINICIANS COULD REFER PATIENTS, FAMILY MEMBERS, TO THESE DEVICES OR THIS PROGRAM WHERE THEY COULD ACCESS IT. >> MY QUESTION IS HAVING TO DO WITH SUSTAINABILITY AND HOW ARE YOU GOING TO TRANSITION THIS FROM A STEP-DOWN UNIT TO THE NEXT PHASE WHERE THEY WILL BE MOVING TO. HOPEFULLY THEY WILL MOVE OUT OF THE ICU UNIT AND INTO -- >> SO WITH THIS ONE, WE ARE FOCUSED ON CAREGIVER SELF-MANAGEMENT. SO, HOPEFULLY IT CAN BE USED ACROSS CONTEXT REGARDLESS OF IN THE ICU OR BEYOND. THESE ARE HEALTH PROMOTION STRATEGIES THAT WOULD BENEFIT THESE CAREGIVERS AND HELP THEM SUSTAIN NOT ONLY THEIR OWN HEALTH BUT THE HEALTH OF THE INDIVIDUALS THAT THEY ARE PROVIDING CARE. SO THEY WOULD -- THE BAND WILL FOLLOW THEM OR BE WITH THEM AS THEY CROSS THESE CONTEXT. >> I WAS THINKING IN TERMS OF THE CARE PROVIDERS THEY ARE MOVING FROM ONE STAGE OF THEIR CARE TRAJECTORY TO THE NEXT, THAT THEY ALSO WILL BE HAVE TO BE BUILT IN OTHERWISE BECAUSE THEY MAY NEED ASSISTANCE WITH USING THIS TECHNOLOGY THEY I HAVE. >> IN THE REAL WORLD APPLICATION, YES. >> SELF-MANAGEMENT INVOLVES THE HEALTH CARE TEAM NOT JUST THE PATIENTS AND THE FAMILY. IT'S ALSO THE HEALTH CARE PROVIDER, THE SYSTEM, THE COMMUNITY, ET CETERA. MORE BROADLY. ARE YOU THINKING ABOUT THAT NOW AS YOU'RE MOVING YOUR MODEL ALONG? I THINK YOU WILL BE WELL PREPARED. >> THANK YOU VERY MUCH DOCTOR. >> ONE MORE QUESTION, BILL. >> WITH SOME OF THESE TECHNOLOGIES, I THINK WITH UNIVERSITY-BASED CARE SYSTEMS AND CERTAINLY THE VA, THERE IS A -- WE HAVE SEEN A NUMBER OF ELECTRONIC M HEALTH AND OTHER DEVICES TO HELP BOTH PATIENCE AND FAMILIES DEAL WITH CHRONIC CONDITIONS, WHETHER IT IS DEPRESSION AND PTSD-BASED, PSYCHOLOGICAL ISSUES OR DUAL DIAGNOSIS IN THAT REGARD. WOUNDED WARRIOR WHO HAVE SERIOUS CONDITIONS EITHER BRAIN INJURIES OR MISSING LIMBS. THEY ARE MAKING GREAT STRIDES IN THE HOSPITAL SETTINGS AND IN AFTERCARE. I GUESS I SHOULD HAVE INVITED SOMEONE FROM VA OR DOD. BUT NEXT TIME. I THINK WE CAN LOOK TO BOTH THAT AND OBVIOUSLY A NATURAL STEP FOR WHEN IT COMES TO DISSEMINATION AND IMPLEMENTATION PROJECTS, WOULD BE FOR DR. HICKMAN AND OTHERS TO ROLLOUT THESE INTERVENTIONS THROUGH THEIR OWN HEALTH CARE FACILITIES OR THEIR RESEARCH HOSPITAL PARTNERS. >>> PLEASE WELCOME DR. DRENNA WALDROP-VALVERDE. I'LL LET HER TELL BUT HERSELF AND THEN SHE CAN TAKE IT FROM THERE. >> GOOD MORNING. CAN YOU HEAR ME OKAY? PERFECT. SORRY FOR RUNNING LATE. ONE OF THOSE DAYS. SO THE NAME IS DRENNA WALDROP-VALVERDE. PLEASE JUST CALL ME CORINA. IT'S THE LONGEST NAME ON THE PROGRAM. I'M FROM EMORY UNIVERSITY IN ATLANTA AND I HAVE BEEN FORTUNATE ENOUGH FOR THE PAST THREE YEARS GOING INTO FOUR YEARS TO DIRECT THE CENTER FOR NEUROCOGNITIVE STUDIES AT THE SCHOOL OF NURSING FUNDED BY THE NINR. SO I HAVE A LIST OF THANK YOUS I WANT TO START WITH A BIG THANK YOU TO THE NINR FOR THIS PROJECT. SO WHAT I'LL BE TALKING ABOUT FOR A WHILE THIS MORNING, WHAT I HOPE TO STIMULATE THOUGHTS ON IS, AND IT'S A GREAT SEGUE FROM DR. HICKMAN'S TALK. I'LL TALK MORE ABOUT CHRONIC ILLNESS AND DEALING WITH THE MANAGEMENT OF CHRONIC ILLNESS OVER TIME AND WHAT ARE SOME OF THE CORE, BASIC BEHAVIORAL SETS OF SKILLS THAT WE MIGHT NEED TO BE ABLE TO TAKE CARE OF OURSELVES AND TAKE CARE OF OUR LOVED ONES AND WHY IS IT SOME OF THOSE VERY SKILLS THAT ARE SO IMPORTANT FOR SELF-MANAGEMENT ARE THE VERY SKILLS THAT CAN BE IMPACTED BY THE CHRONIC ILLNESSES WE ARE TRYING TO SELF MANAGE? IT'S A CIRCULAR PROCESS. SO I'LL TALK ABOUT THE CENTER, WHAT IT IS ABOUT AND SOME OF THE PILOT PROJECTS WE HAVE BEEN FORTUNATE ENOUGH TO BE WORKING ON WITH THE CENTERED. SOME OF MY OWN WORK IS SEPARATE BUT STILL RELATED AND THEN HAVE TIME FOR QUESTIONS, HOPEFULLY. SO, WHEN WE THINK ABOUT OPERATIONALIZING SELF-MANAGEMENT, THE FRAMEWORK THEY HAVE BEEN WORKING FROM, AND AGAIN I WANT TO NOT DISCOUNT THE MYRIAD OF FACTORS THAT CAN INFLUENCE SELF MANAGE. BUT AGAIN FOCUSING IN ON A CORE SET OF BEHAVIORAL SKILLS, THINKING ABOUT COGNITIVE SUBSETS OF SKILLS THAT ARE REALLY NEEDED TO MANAGE DAY-TO-DAY BEHAVIORS. AND IF YOU LOOK AT SOME OF THE WORK BY SOME OF THE MOST WELL-KNOWN AND CLASSIC FOLKS WHO DO SELF-MANAGEMENT THEORY, DR. LAWYER IG, SOME OF THE FIVE CORE SELF-MANAGEMENT SKILLS SHE TALKS ABOUT ARE PROBLEM-SOLVING, DECISION-MAKING, UTILIZING RESOURCES, FORMING A HEALTH CARE PROVIDER RELATIONSHIP, AND THEN TAKING ACTION. SOME OF THE AREAS THEY WILL FOCUS ON ARE THOSE FIRST TWO BULLETS, PROBLEM-SOLVING AND DECISION-MAKING. THIS IS WHAT I'LL BE TALKING ABOUT. S EVEN THOUGH A LOT OF CHRONIC ILLNESSES WE THINK ABOUT THAT AFFECT SO MANY AMERICANS AND PEOPLE AROUND THE WORLD, DON'T NECESSARILY DIRECTLY AFFECT THE BRAIN. THEY DON'T HAVE TO THINK ABOUT A STROKE, FOR INSTANCE, BUT SO MANY OF THE CHRONIC SYSTEMIC CONDITIONS WE DEAL WITH DO IMPACT THE BRAIN. WE DON'T OFTEN THINK ABOUT THAT WITHOUT A TAKE-AWAY MESSAGE. SO JUST A LITTLE BACKGROUND. CHRONICIL SENTENCE A BIG PROBLEM IN THE U.S. 7-10 DEATHS ARE CAUSED BY CHRONIC ILLNESS AND NEARLY HALF OF AMERICANS HAVE A CHRONIC CONDITION. ONE QUARTER HAVE A FUNCTIONAL LIMITATION RESULTING FROM THAT CHRONIC ILLNESS AND THE NUMBER OF AMERICANS OVER 65, THAT GROUP IS MORE LIKELY TO HAVE A A CONDITION AND WILL DOUBLE BY 2030. SOME OF THE CONDITIONS THAT I MENTIONED THAT I'LL TALK ABOUT THAT HAVE AN IMPACT ON COGNITIVE FUNCTION OR COGNITIVE IMPAIR. ARE THOSE THAT DON'T ALWAYS DIRECTLY AFFECT THE BRAIN. SO CARDIOVASCULAR DISEASE IS ONE OF THE AREAS WHERE WE SEEN A LOT OF RESEARCH AND A LOT OF INTEREST IN THIS AREA AND RELATIVELY RECENT PAST. DIABETES AS WELL. KIDNEY DISEASE IS AN AREA THAT CAN AFFECT COGNITIVE FUNCTION AND MY OWN WORK HAS BEEN IN HIV/AIDS AND STILL FINDING IMPACT ON COGNITIVE FUNCTION, EVEN AMONG THOSE WHO ARE VEER LOGICALLY CONTROLLED. CHRONIC ILLNESS IS ALSO ASSOCIATED WITH GREATER EMOTIONAL DISTRESS AND I'LL SAY THAT MOST OF THE WORK THAT WE ARE DOING IS ASSOCIATED WITH COGNITION BUT YOU CAN NOT RULE OUT THE IMPACT OF THOSE ISSUES AND HOW THEY INTERACT WITH ONE ANOTHER SO SOME OF THE THINGS THAT CAN RESULT FROM COGNITIVE IMPAIRMENT, IS REDUCED -- THINK ABOUT HAVING REDUCED CAPACITY TO CARRY OUT THE BEHAVIOR. THAT CAN BE THE BUCKET OF THE COGNITIVE DYSFUNCTION AND THEN THE AEFFECTIVE ISSUES CAN RESULT IN REDUCED MOTIVATION. NOT THAT THEY ARE SEPARATE ISSUES OF COURSE BUT AEFFECTIVENESS IS DISTRESS THAT CAN DISRUPT NEUROENDOCRINE CASCADES AND THEY ARE NOT WORKING IN ISOLATION. THE COGNITIVE AFACTIVE ISSUES COMPOUND ONE ANOTHER. THE NATURE OF COGNITIVE DEFITS AND HOW THEY IMPACT SELF CARE CAN VARY BY THE TYPE OF ILLNESS THAT YOU HAVE AND THE SEVERITY OF THAT ILLNESS OVER TIME, THE DYNAMIC NATURE OF ANY ILLNESS, THE SYMPTOMS WAX AND WAYNE AND THE PRESENCE OF CO-MORBIDITY T WILL BE A HUGE ISSUE AND AS THE U.S. POPULATION CONTINUES TO AGE AND ENVIRONMENTAL CONTRIBUTORS AS WELL. THAT'S NOT JUST THE ENVIRONMENT AS FAR AS TOXINS AND EXPOSURES BUT ALSO RESOURCES AND ACCESS TO CARE AND THINGS SUCH AS THAT AND MANY OF OUR HEALTH CARE PROVIDERS ARE NOT AGAIN THINKING ABOUT THE CHRONIC ILLNESSES IN TERMS OF COGNITIVE FACTIVE ISSUES UNLESS THEY ARE THOUGHT TO DIRECTLY IMPACT THE BRAIN. HERE IS A FEW EXAMPLES OF THE MECHANISMS BY WHICH THE BRAIN CAN BE IMPACTED BY THE EXPERIENCE OF THESE CHRONIC ILLNESSES. FOR CARDIOVASCULAR DISEASE, YOU HAVE DECREASED BLOOD PROVISION, AMYLOID DEPOSITS IN THE BRAIN, ARTHROSCLEROSIS AFFECT THE BRAIN FUNCTION. CONGESTIVE HEART FAILURE. INDIVIDUALS HAVE SHOWN DEFICITS IN VERBAL LEARNING, WORKING MEMORY, MENTAL FLEXIBILITY. CANNOT HOLD PIECES OF INFORMATION IN YOUR HEAD FOR A SHORT AMOUNT OF TIME. WITUDES HAVE TO LOOK AT A PHONE NUMBER IN THE PHONE BOOK, REMEMBER IT, HOLD IT IN YOUR MINE AND PUNCH IT INTO THE PHONE. I'M DATING MYSELF, I REALIZE THAT. AND HYPERTENSION, WHICH IS INCREDIBLY COMMON. SO MANY PEOPLE SUFFER FROM HYPERTENSION. THEY DON'T EVEN KNOW IT. HYPERTENSION IS BEING MORE MORE RECOGNIZED AS BEING ASSOCIATED WITH COGNITIVE DEFICITS IN AREAS WE CONSIDER MORE HIGHER ORDER PROCESSING, PROCESSING SPEED AND I THINK SO THAT CAN ALSO IMPACT MEMORY IMPAIRMENTS. IF YOU HAVE ISSUES OF PROCESSING SPEED AND ATTENTION AS WELL. SO SOME ARE MORE MILD COGNITIVE CHRONIC ILLNESSES THAT CAN BE ASSOCIATED WITH COGNITIVE DISTINCTION AS WELL. AND MY NECK OF THE WOODS IN WORKING WITH HIV/AIDS, SOME OF THE COGNITIVE ISSUES THAT WE SEE AGAIN IN THE LONG TERM INFECTED REALLY WELL NEUROLOGICALLY CONTROLLED POPULATION WE'LL SEE POOR CONCENTRATION AND MEMORY. AND ATTENTION. PROBLEMS WITH SHORT-TERM MEMORY. PROBLEM-SOLVING ISSUES. CALCULATION ABILITY NOT BEING ABLE TO DO MATH PROBLEMS AND NOT FROM THE STANDPOINT OF NOT HAVING LEARNED NATH SCHOOL BUT FROM BEING ABLE TO PROCESS THIS INFORMATION. PLANNING AHEAD, LEARNIN NEW THINGS. WE SEE MOTOR SIMPLEONS AND BEHAVIORAL SYMPTOMS, AGITATION AND PERSONALITY CHANGES AND CHANGES IN MOOD AS WELL. SO I A LITTLE ASPECT IN MOOD AS WELL. SOME OF THE SAME CONGRESSES THAT ARE ASSOCIATED WITH THE GREATER RATE OF COGNITIVE DYSFUNCTION ARE ASSOCIATED WITH ISSUES WITH LOW MOOD AND PROBLEMS WITH AFFECT. DEPRESSION IS THE MOST COMMON OF THESE AND IT HAS BEEN THE MOST HIGHLY STUDIED AMONG NEARLY ALL OF THESE CONDITIONS AND THE PRESENCE OF CHRONIC ILLNESS IS STRONGLY ASSOCIATED WITH THE PRESENCE OF DEPRESSION AS WELL. WHEN YOU PUT DEPRESSION IN THE MIX, YOU'RE MORE LIKELY TO HAVE MORE ISSUES WITH YOUR ILLNESS, SELF-MANAGEMENT, FUNCTIONAL DISABILITIES AND HAS BEEN ASSOCIATED WITH A GREATER RATE OF DEATH AS WELL. SO THE FRAMEWORK FOR THE CENTER FOR NEUROCOGNITIVE STUD CEASE THIS. AS I MENTIONED BEFORE, OUR THOUGHT PROCESS IS VERY CIRCULAR IN THAT ALL OF THESE ISSUES AFFECT ONE ANOTHER AND CAN EXACERBATE ONE ANOTHER. FLIP IT AROUND, IT ALSO BENEFIT THE VARIOUS SYMPTOMS AND SELF-MANAGEMENT BEHAVIORS AS WELL. SO SOME OF THE AREAS THAT WE ARE LOOKING AT SPECIFICALLY THAT SHOW HOW COGNITIVE DEFICITS CAN EXACERBATE ILLNESSES ARE AGAIN WITH SELF-MANAGEMENT OF ILLNESS APPEARS MEDICATIONS OF THE WORK I HAVE DONE IN AND I HAVE OF COURSE ADHERENCE TO DIET AND EXERCISE. AND THEN IN REGARDS TO MANAGING SYMPTOMS, COGNITIVE DEFICITS DELAY SOMEONE'S OR A CAREGIVER'S ABILITY TO ACT UPON THOSE SYMPTOMS. AND THERE REALLY HAS NOT BEEN, TO MY KNOWLEDGE, A LARGE BODY OF WORK LOOKING AT THE IMPACT OF COGNITIVE IMPAIRMENT ON SELF-MANAGEMENT IN CHRONIC MEDICAL CONDITIONS. WE TEND TO THINK OF THE BRAIN AS UP HERE AND SEPARATE FROM EVERYTHING ELSE BUT IT'S REALLY NOT. SO, BACK TO HIV AND THE WORK THAT I HAVE DONE. THE WORK THAT HAS BEEN DONE IN THIS HAS SHOWN THESE AREAS TO BE IMPACTED BY THE HIV CONDITION WHEN THE INDIVIDUALS ARE LIVING WITH THE DECEASED FOR QUITE SOMETIME AND EVEN THOUGH AGAIN WHEN IT IS WELL CONTROLLED. SO IT'S A PROSPECTIVE MEMORY, REMEMBERING TO REMEMBER. EXECUTIVE FUNCTIONING IS A LARGE UMBRELLA TERM AND IT REALLY ENCOMPASSES THINGS SUCH AS BEING ABLE TO PLAN AHEAD, TO ORGANIZE, TO MULTITASK. AND IT IS GETTING INTO THE DETAILS. YOU HAVE TO HAVE REALLY GOOD ATTENTION SKILLS. THAT'S CORE AND THEN THAT BUILDS ON YOUR MEMORY SKILLS AND THAT BUILDS ON THE PLAYING SKILLS AND THINGS LIKE. THAT SO IT'S A LARGE UMBRELLA TERM AND WE FIND A LOT OF ISSUES IN EXECUTIVE FUNCTION IN HIV AS WELL WORKING MEMORY. SOMETIMES ASSUMED UNDER EXECUTIVE FUNCTIONING. AND THEN AGAIN, AS THE HIV POPULATION AGES, YOU HAVE ISSUES OF AGING WHICH ALSO ADDED ON TOP OF THE ISSUES OF THE HIV VIRUSES ITSELF SO IT WILL BE -- WE EXPECT A LARGER ISSUE IN THAT POPULATION. AND THEN AGAIN, BACK TO AFFECT AND MOODS. DEPRESSION IS ALSO LINKED AND IT IS DIFFICULT TO 73 IT IS COGNITIVE DEPRESSION? MAJOR DEPRESSIVE DISORDERS, ISSUES WITH ATTENTION, EXECUTIVE FUNCTIONS, VISUOSPATIAL AND MEMORY AND CAN IMPACT YOUR LEARNING THROUGH THE DEFICITS IN ATTENTION AND SO WHAT ARE SOME OF THE ELEMENTS OF DEPRESSION THAT AFFECT SELF-MANAGEMENT? I'M WORKING WITH POSTDOCS NOW TO LOOK AT THAT IN TERMS OF RETENTION IN HIV CARE AND WE'LL HAVE TO WAIT ON THOSE RESULTS. WE DON'T KNOW YET. AND THEN AS I MENTIONED EARLIER, MULTIMORE BIDS. CHRONIC ILLNESS IN THE MULTIPLE CHRONIC ILLNESSES PARTICULARLY IN THE AGING POPULATIONS. UNDERSTANDING HOW THESE CHRONIC CONDITIONS AFFECT THE BRAIN AND BRAIN HEALTH AND BEHAVED RELATIONSHIPS WILL BE REALLY IMPORTANT IN THE NOT SO FAR OFF FUTURE. THINGS YOU PROBABLY ALREADY KNOW ABOUT MULTICO-MORBIDITIES. GREATER NUMBER OF CO-MORBID MEDICAL CONDITIONS AS WELL. AND SO THE CENTER FOR NEUROCOGNITIVE STUDIES IS TRYING TO MAKE A DENT IN SOME OF THESE ISSUES. WE HAD THREE PILOTS. ONE PERSON MOVED SOMEWHERE ELSE. WE ARE IN TRANSITION AM SO WE HAVE TWO PILOTS THAT I'LL MENTION TODAY. THE FIRST PILOT HEADS FINISHED COLLECTING DATA AND SHE IS ANALYZING HER FINDINGS NOW. SHE IS LOOKING AT THAT POPULATION OF INDIVIDUALS WHO HAVE HYPERTENSION, WHO ARE UNTREATED AND WHO HAVE SORT OF SUBCLINICAL AND THEN LOW CLINICAL LEVELS OF HYPERTENSION AND WHAT IS THE RELATIONSHIP OF THEIR COGNITIVE SKILLS, THEIR AFFECT AND SLEEP, WHICH WE WILL BE HEARING ABOUT IN A LITTLE WHILE AS WELL. ALL OF THESE ISSUES ARE VERY COMMON IN THE POP POLICE STATION HOW DO THEY RELATE TO ONE ANOTHER? WAR THE BIOMARKERS THAT MAY BE ASSOCIATED WITH THESE RELATIONSHIPS? AND REALLY THE PILOT PHASE TRYING TO DESCRIBE THE PROBLEMS OR CHARACTERIZE WHAT IS GOING ON IN THE POPULATION TO BE ABLE TO MAP SOME OF THE KEY ISSUES AND SOME OF THE KEY MODERATORS OF THESE RELATIONSHIPS. AND OUR SECOND PILOT STUDY IS LOOKING AT AN EXERCISE AND COGNITIVE TRAINING INTERVENTION AND SHE IS, WHOING WITH INDIVIDUALS WITH HEART FAILURE. AND WE ARE LOOKING AT A THREE-ARM INTERVENTION. SO SHE IS DOING THE EXERCISE PLUS COGNITIVE RETRAINING. THIS IS COMPUTER COGNITIVE RETRAINING. IF YOU SEEN THE COMMERCIALS FOR -- DO I THIS WORK BECAUSE I HAVE A TERRIBLE MEMORY. LUMINOSITY. THAT'S THE ONE. WE ARE NOT USING THAT BUT IT IS SOMETHING LIKE THAT. SO THE PREMISE IS THAT WITH THE BENEFITS OF EXERCISE AND BRAIN HEALTH AND CARDIOVASCULAR FUNCTION AND WHAT HAVE YOU YOU, HOPEFULLY THAT MAY PRIME THE BRAIN TO BE ABLE TO BETTER UTILIZE THE COGNITIVE RETRAINING SO CONTROL ARM AND EXERCISE ARM AND EXERCISE IN COGNITIVE RETRAINING ARM. INTERESTINGLY ENOUGH, THIS HAS A LITTLE ASIDE. WE ACTUALLY HAD MORE GRUMBLING ABOUT PARTICIPANTS ABOUT THE COGNITIVE RETRAINING THAN THE EXERCISE. SO, I THOUGHT THAT WAS INTERESTING. SO WE WORKED WITH SOME INCENTIVES TO GET FOLKS TO DO THE COMPUTER COGNITIVE TRAINING. AND SHE IS IN HER FINAL 3-4 MONTHS OF DATA COLLECTION FOR THIS AS WELL. SO HOPEFULLY WE WILL HAVE SOME INTERESTING FINDINGS FOR YOU SOON ABOUT THIS ONE. WE PUT IN A SUPPLEMENT FOR THE CENTER RELATED TO THIS EXERCISE PILOT THAT I MENTIONED. WE WILL LOOK AT OUR PARTICIPANTS IN TERMS OF COME BRAIN AMINGING AS WELL. WE ARE LOOKING AT D. TI, AND RESTING FUNCTIONAL MRIs SO HOPEFULLY THAT WILL WORK OUT FOR US AND WE WILL BE ABLE TO LOOK AT SOME OF THESE QUESTIONS AT THE VERY BASIC LEVEL THROUGH THE BRAIN IMAGING WORK. SO I'LL TALK A A LITTLE BIT ABOUT SOME OF THE WORK THAT I HAVE DONE IN THE PAST ASKING SOME OF THESE QUESTIONS. WHAT ARE SOME OF THE BASIC SKILL SETS IMPACTED IN THE CHRONIC ILLNESS I'M INTERESTED IN WHICH HAPPENS TO BE HIV AND HOW DOES IT IMPACT INDIVIDUAL SELF-MANAGEMENT? SO THIS PAPER WAS LOOKING AT THE HIV POSITIVE INJECTING DRUG USERS. A NUMBER OF ISSUES ASSOCIATED WITH COGNITIVE FUNCTION, NOT ONLY FROM HIV BUT ALSO FROM DRUG USE. AND THESE ARE SOME OF THE -- A MULTITUDE OF TASKS. WE HAD A COMPREHENSIVE NEUROCOGNITIVE BATTERY AND A NUMBER OF OTHER THINGS AS WELL BUT WITHOUT GETTING INTO DETAILS, WE TOOK THE INDIVIDUAL SCORES - OAR YOU FAMILIAR WITH NEUROCOGNITIVE TESTS? I DIDN'T PUT A LOT OF SLIDES IN ON THAT. INSTEAD OF ASKING SOMEONE SELF REPORT, ARE HAVING TROUBLE REMEMBERING? DO YOU LOSE YOUR KEYS? ONE OF MY PERSONAL FAVORITES. DO YOU HAVE TROUBLE MANIPULATING KEYS IN THE LOCKS? INSTEAD OF ASKING SOMEONE THEIR OPINION OF HOW THEY DO THESE THINGS, WE HAVE PERFORM-BASED TESTS THAT ARE REQUIRING PARAPHERNALIA AND WHAT HAVE YOU. SO SOMEONE CARRIES OUT A TASK AND BASED ON GOOD NORMS, BASED ON THEIR AGE, THEIR GENDER, THEIR YEARS OF EDUCATION, THEIR RACE, ETHNICITY, WE COMPARE THEIR PERFORMANCE TO OTHERS LIKE THEM AND WE EXPECT THEM TO FALL WITHIN A SIMILAR RANGE OF PERFORMANCE UNLESS THERE IS AN ISSUE IN THAT PARTICULAR COGNITIVE AREA. THAT IS IN A NUTSHELL WHAT THE COGNITIVE TESTS ARE. SO WE GAVE A NUMBER OF TESTS AND THEN COMBINED THE TEST SCORES INTO THREE AREAS EXECUTIVE FUNCTION. WE LOOKED AT MEMORY, LEARNING, AND DELAYED RECALL AND THEN PSYCHOMOTOR SPEED BECAUSE THAT IS A PARTICULAR BIG ISSUE WITH HIV. AND WHAT THESE NEXT THREE SLIDES TELL YOU IS THAT CONTROLLING FOR THESE OTHER ISSUES THAT THE INDIVIDUALS REPORTED, WE LOOKED AT THE MEMORY DOMAIN AND THEN WE LOOKED AT THE EXECUTIVE DOMAIN AT THE BOTTOM THE LAST ROW CHANGES AND THEN THE PSYCHOMOTOR DOMAIN IF YOU LOOK AT THE INTERVALS, YOU WILL SEE THE PSYCHOMOTOR DOMAIN WAS SIGNIFICANTLY ASSOCIATED WITH SELF REPORTED ADHERENCE. THAT WAS MEDICATION ADHERENCE WITH OUTCOME FOR THIS STUDY. AND IN HIV PSYCHOMOTOR PERFORMANCE IT IS MORE THAN JUST MANIPULATING SOMING WITH YOUR HANDS. IT IS REFLECTEDDIVE OF OVERALL DISEASE STATE AND HAS A LOT TO DO WITH PROCESSING SPEED AND BEING ABLE TO THINK THROUGH MULTIPLE STEPS. THIS IS A MULTI-STEP PSYCHOMOTOR TEST THAT THE REQUIRED A NUMBER OF SEQUENCES OF ACTIVITIES BEFORE THEY GOT THE SCORE. AND THEN IN THIS STUDY, WE DID SOMETHING SIMILAR. WE LOOKED AT COGNITIVE IMPAIRMENT AND WE ALSO ACCOUNTED FOR IN THIS POPULATION, FOR READING LEVEL AND EDUCATIONAL ATTAINMENT IN THAT WAY AND WE FOUND A LOT OF THE PARTICIPANTS IN THE STUDY WOULD REPORT TAKING THEIR MEDICATIONS LIKE THEY WERE SUPPOSED TO BUT THEN WHEN YOU COMPARED WHAT THEY SAID THEY WERE DOING AND WHEN THEY THOUGHT THEY WERE DOING IT CORRECTLY WITH THE PRESCRIPTION INSTRUCTIONS THEY OFTENTIMES DID NOT MATCH. AND SO WHAT WE DID FOR THIS STUDY IS COMBINED THE COGNITIVE PERFORMANCE, INVITED PEOPLE INTO IMPAIRED AND NONIMPAIRED COGNITIVE PERFORMANCE, WITH HIGH LITERACY AND LOW LITERACY AND DID THAT WITH A WIDE RANGE OF ACHIEVEMENT TESTS TO LOOK AT THEIR -- YES? [ OFF MIC ] >> IN THIS CASE, ACTIVITY JUST OVERALL LITERACY. I DO A LOT OF WORK IN THIS AS WELL. BUT THIS IS JUST THE READING TEST. NOT NECESSARILY FOR HEALTH-RELATED WORDS. YOU'LL SEE THAT AT THE BOTTOM LINE, IF ARE THOSE INDIVIDUALS WHO HAVE BOTH LOW LIT ADVICE AND LIVE PERFORMANCE, SO THEY HAVE COGNITIVE IMPAIRMENTS BELOW THE MEAN, THEY WERE 9 TIMES MORE LIKELY TO BE NONADHERENCE TO THEIR MEDICATIONS. AND HEALTH LITERACY WAS THE NEXT AREA OF WORK WHERE I HAVE DONE SOME WORK IN COGNITION AND SELF-MANAGEMENT. AND I THINK THIS SLIDE WAS SUPPOSED TO HAVE OR -- THERE IT IS. THAT IS ABOUT OUR STUDY. AND SO MEDICATION MANAGEMENT CAPACITY WAS THE OUTCOME FOR THIS STUDY. AND THAT IS A LITTLE BIT DIFFERENT FROM JUST ADHERENCE. ARE YOU TAKING YOUR MEDICINE LIKE YOU'RE SUPPOSED TO? HAVE YOU MISSED A PILL IN THE LAST WEEK OR 30 DAYS AND CAPACITIY IS MORE ACCURACY. WE USE A SIMULATED REGIMEN, FIVE PILLS EACH WITH THE PILL BOLTS HAD ITS OWN LABEL AND A CERTAIN NUMBER OF MEDICATIONS IN IT AND THE INDIVIDUALS GO THROUGH A SERIES OF TASKS. THEY ANSWER QUESTIONS ABOUT A MEDICATION INSERT WHEN THEY GO TO THE DOCTOR AND WHAT THE SYMPTOMS CAN BE AND WHAT DO YOU DO IF YOU HAVE DIARRHEA AND THEY DO THINGS LIKE COUNTING OUT THE NUMBER OF PILLS THEY NEED TO TAKE EACH DAY. YOU WILL BE TAKE AG I TRIP IN 5 DAYS. LOOK AT MEDICATION A. DO YOU NEED A REFILL BEFORE YOU GO? SO A LOT OF REAL WORLD PROBLEM-SOLVING BEHAVIORS WITH THIS MEASURE CALLED THE MEDICATION MANAGEMENT TEST. I'M HAPPY TO GET THE REFERENCE FOR YOU. SO, JUST QUICKLY WHAT WE FOUND IN THIS STUDY WAS THAT IF YOU LOOK -- WHEN YOU PUT THESE IN THE MODEL AT FIRST, JUST ABOUT EVERYTHING COMES OUT. WHEN YOU PUT IN THESE COGNITIVE FUNCTIONS, EXECUTIVE MEASURES, VERBAL MEMORY, PLANNING MEASURES AND PSYCHOMOTOR, YOU FIND THAT THE EXECUTIVE SKILL SET AND THE PLANNING SKILL SET ARE THE ONES THAT ARE ASSOCIATED WITH MEDICATION MANAGEMENT CAPACITY BEING ABLE TO CARRY OUT THE SKILLS YOU NEED TO MANAGE YOUR MEDICATIONS AND THEN THE DEMOGRAPHIC VERBALS WERE NO LONGER SIGNIFICANT. AND THEN QUICKLY, THE NEXT STUDY LOOKED AT A DIFFERENT SELF-MANAGEMENT BEHAVIOR, WHICH WAS RETENTION IN HIV CARE. SO YOU CAN'T GET YOUR MEDICATIONS AND ADHERE IF YOU DON'T GO TO YOUR PROVIDER AND GET REGULAR CARE AND GET THOSE PRESCRIPTIONS. SO WE HAD A BASELINE INTERVIEW. WE FOLLOWED PEOPLE FOR 28 WEEKS AND THEN DID A FOLLOW-UP INTERVIEW. WE DID MEDICAL RECORD EXTRACTIONS TO GET THE NUMBER OF SCHEDULED APPOINTMENTS THAT INDIVIDUAL ATTENDED. AND THEN QUICKLY, THE FINDINGS SHOWED THAT WHEN WE LOOKED AT A DIRECT RELATIONSHIP BETWEEN OUR COGNITIVE VARIABLE WHICH IS MPZ8, A COMBINATION OF EIGHT DIFFERENT NEUROPSYCHOLOGICAL TEST SCORES, THEY LOOKED AT DIRECTLY RETENTION AND CARE AND THERE WAS NO RELATIONSHIP. WE THOUGHT IF HAVE YOU COGNITIVE IMPAIRMENT, YOU MAY FORGET TO GO TO YOUR APPOINTMENT. YOU MAY GET DISORGANIZED. YOU MAY HAVE PROBLEMS PROSPECTIVE MEMORY. SO WE DIDN'T SEE THIS RELATIONSHIP THERE. WHAT WE FOUND INSTEAD IS FOR THOSE INDIVIDUALS WHO HAD COGNITIVE IMPAIRMENT THAT HAD GOOD SOCIAL SUPPORT, THEY WERE MORE LIKELY TO ATTEND THEIR SCHEDULED HIV MEDICAL APPOINTMENTS JUST LIKE THOSE WHO DID NOT HAVE COGNITIVE IMPAIRMENT. WE FOUND A MODERATING AFFECT THERE. AND THIS IS JUST A GRAPH DEPICTING THATTED MOS RATING AFFECT. SO SOMETIMES WE HAVE TO THINK A LITTLE BIT OUTSIDE OF OUR DIRECT QUESTION AND THINK ABOUT GIVEN THE FACT THAT SELF-MANAGEMENT BEHAVIORS ARE SO COMPLEX, AND THE COGNITIVE PIECES ARE THIS ONE OF MANY IMPORTANT VARIABLES THAT ARE NEEDED TO TAKE CARE OF OUR CHRONIC ILLNESSES, YOU THINK ABOUT SOME WAYS THAT OTHER EXPERIENCES THAT MAY BE IMPACTING THEIR RELATIONSHIP AND THINGS THAT PEOPLE ARE NATURALLY DOING IN THE REAL WORLD WE CAN BUILD UPON FOR INTERVENTIONS. SO, I'D LIKE TO PROPOSE AND SO FOR THE TAKES AWAY MESSAGE, THE FIRST IS THAT EVEN THOUGH YOU DON'T HAVE A BRAIN DISEASE, YOUR CHRONIC ILLNESS IS PROBABLY AFFECTING YOUR BRAIN T MAY NOT MANIFEST ITSELF IN THE IN INABILITY TOW SELF MANAGE OR SHOW UP ON COGNITIVE TESTING OR BRAIN IMAGING, BUT IT IS IN THERE. IT'S AFFECTING YOUR BRAIN. WE NEED TO THINK ABOUT HOW THE BRAIN HEALTH IMPACTS SELF-MANAGEMENT AND WHETHER IT IS FROM THE STANDPOINT OF THE CARE GIVING AND THEIR ABILITY TO UNDERSTAND WHAT THE LOVED ONE OR CAREGIVER IS DEALING WITH AND THEN THE CARE RECIPIENTS THEMSELVES. SO COGNITIVE SKILLS ARE CORE. I THINK ABOUT IT AS AN ONION. EVEN IF A LOT OF THESE KEY PIECES ARE IN PLACE, THEY MAY BE MORE OR LESS EFFECTIVE DEPENDING ON THOSE CORE SETS OF COGNITIVE SKILLS NEEDED TO MAKE THESE DECISIONS TO PROBLEM-SOLVE, TO BE MOTIVATED TO DO THINGS ON A DAY-TO-DAY BASIS. SO WHEN YOU THINK ABOUT HAVING KNOWLEDGE OF YOUR CONDITION, ADAPTING TO CURRENT SITUATIONS, THOSE ALL REQUIRE MEMORY, RIGHT? WE THINK ABOUT MAKING PLANS, AND ORGANIZING OUR SCHEDULE AND I'M TRYING TO GET MY PARENTS TO COME OVER AND VISIT, WHILE MY DAD HAS ALL THESE DOCTORS VISITED, THEY ARE TRYING TO FIND WHEN THEY CAN COME BETWEEN SOCCER GAMES AND HIS TRAVEL AND MY VISITED, BEING ABLE TO DO THAT, IT REQUIRES MEMORY AND PLANNING AND ORGANIZING. SOMETIMES WE FORGET THAT JUST BECAUSE WE HAVE A BRAIN AND WIZE IT, IT IS PART OF THE PICTURE AND OF COURSE AVOIDING DISTRACTIONS MAINTAIN CONCENTRATION AND DOING MORE THAN ONE THING AT A TIME. SOME PEOPLE DO GREAT WITH SELF-MANAGEMENT UNTIL SOMETHING IN THE ROUTINE CHANGES AND THEN IT THROWS THEM OFF. BEING ABLE TO UNDERSTAND WHAT AN INDIVIDUAL'S STRENGTHS ARE WHAT DO YOU HAVE TO WORK WITH? WHAT ARE THE AREAS THAT CAN BE PROBLEMS FOR THEM AND BARRIERS? TING IS REALLY IMPORTANT IN UNDERSTANDING AND TAILORING INTERVENTIONS TO WORK WITH INDIVIDUALS WHO HAVE CHRONICIL KNOWLEDGES. AND THEN ONCE YOU HAVE IT FIGURED OUT, IT CHANGES BECAUSE THE CHRONIC ILLNESS CHANGES OVER TIME AND THEY GET SOMETHING NEW. SO THIS IS MY THANK YOU SLIDE. AND THIS IS THE GRANT SUPPORT I HAD OVER THE YEARS HELP WITH THE CENTER AND THEN THE WORK THAT I HAVE DONE IN HIV AS WELL. THAT'S ALL. THANK YOU VERY MUCH. [ APPLAUSE ] >> SO MUCH TO THINK ABOUT AND SO MANY ACCOMPLISHMENTS. THANK YOU VERY MUCH. MICHAEL PLEASE COME JOIN US. WOULD YOU LIKE TO TALK FROM THERE OR FROM THE TABLE? >> THIS IS FINE. >> LINDA LARKEY. >> [ OFF MIC ] >> AND I'M NOT KNOCKING REPORT IT AT ALL. IT HAS ITS PLACE AND WE USE BOTH. BUT WHERE THAT CAN GET STICKY IS THAT IF SOMEONE IS FEELING OR HAVING TROUBLE REMEMBERING AND CONCENTRATING BUT IT IS REALLY THE CAUSE OF DEPRESSION, THEN THOSE POOR CONCENTRATION AND MEMORY SKILL IMPAIRMENTS MORE THAN LIKELY WILL NOT SHOW UP ON THESE KINDS OF OBJECTIVE TESTING. ANY TIME YOU USE SELF REPORT, YOU NEED TO KEEP IN MIND THAT DEPRESSION CAN CERTAINLY INFLUENCE HOW SOMEONE SEES THEIR ABILITIES. AND IT'S NOT THEY AREN'T SLOWED A LITTLE BIT ORIENTED HAVING TROUBLE, IT'S JUST NOT TO THE POINT WHERE THEY WOULD GET AN IMPAIRED SCORE ON ONE OF OUR TESTS. SO SOMETHING TO KEEP IN MIND. >> [ OFF MIC ] >> WE JUST HAD A PAPER ACCEPTED IN LOOKING AT THAT. MY SON'S BIRTHDAY WAS YESTERDAY AND I STAYED UP REALLY, REALLY LATE. SO THE TESTS WE USE -- THERE ARE A HOST OF TESTS OUT THERE. THERE ARE A LOT OF TESTS. SO IF YOU HAVE A SPECIFIC QUESTION IN MIND, IT'S REALLY BEST TO CONSULT WITH SOMEONE WHO CAN HELP YOU ISOLATE A VERY SPECIFIC TEST. THINGS LIKE THE MENTAL STATUS ARE VERY GLOBAL SO THEY HAVE ONE OR TWO QUESTIONS THAT TAP INTO MANY DIFFERENT DOMAINS BUT THEY ARE REALLY DESIGNED TO DETECT PEOPLE WITH DEMENTIA. SO A LOT OF WHAT WE ARE TALKING ABOUT TODAY IS NOT SO MUCH ABOUT DEMENTIA. BUT WHAT WE ARE TALKING ABOUT HERE IS REALLY LOW-GRADE, MILD TO MAYBE MODERATE COGNITIVE DYSFUNCTION WHERE SOMEONE DOESN'T NEED TO BE INSTITUTIONALIZED. THEY CAN STILL MANAGE TO TAKE CARE OF THEMSELVES FOR THE MOST PART DAY-TO-DAY BUT ARE THEY REALLY DOING IT WELL? DOING IT IN SUCH A WAY THEY ARE OPTIMIZING THEIR CARE AND MINIMIZING THEIR SYMPTOMSES AND EXACERBATE CAN ILLNESSES? THERE ARE A LOT OF TESTS OUT THERE. LOTS OF TESTS. I PROBABLY GAVE 30 DIFFERENT TESTS ACROSS MY DIFFERENT STUDIES IT'S REALLY A LOT. WE CAN TALK MORE. >> THANK YOU FOR A WONDERFUL TALK. MY QUESTION SPEAKS TO YOUR MODEL. FIRST STAGE OF REGRESSION MODEL WITH DEMOGRAPHIC FACTORS AND THE NEUROCOGNITIVE TEST RESULTS. AND THE DEMOGRAPHIC FACTORS WERE NO LONGER SIGNIFICANT. NEUROCOGNITIVE RESULTS PREDICTED YOUR OUTCOME. MY QUESTION SPEAKS TO YOU HAD NOTHING INVOLVING KNOWLEDGE IN THE DEMOGRAPHIC. AND EDUCATION -- EDUCATION -- YOU'RE GOING TO HAVE SOME PEOPLE WHO LEFT HIGH SCHOOL, PEOPLE WHO FINISHED HIGH SCHOOL, MAYBE SOME PEOPLE WITH POST-DIPLOMA EDUCATION OR MAYBE ASSOCIATES DEGREES. SO YOU'RE GOING TO HAVE VARIABILITY NEEDUCATION AND THAT PROBABLY WOULD EXPLAIN SOME VARIABILITY OF YOUR NEUROCOGNITIVE TEST RESULTS AS WELL. DID YOU CONSIDER PUTTING IN AN EDUCATION VARIABLE OF SOME SORT 234 YOUR FIRST MODEL IN. >> WE DIDN'T BECAUSE THE COGNITIVE MEASURES, THE NORMATIVE DATA ADJUSTED FOR EDUCATION. SO WE DIDN'T USE THE RAW SCORES. SO LET'S SAY ONE SCORE MIGHT BE THE NUMBER OF CORRECT WORDS THAT SOMEONE REMEMBERS ANOTHER SCORE MIGHT BE HOW QUICKLY THEY CAN COMPLETE A TASK. NUMBER CORRECT THE MORE THE BETTER. TIME TO COMPLETE THE HIGHER NUMBER WOULD BE POORER PERFORMANCE. SO WE CONVERT THE RAW SCORES TO STANDARD SCORES AND THOSE ARE BASED ON A NUMBER OF DEMOGRAPHIC FACTORS INCLUDING EDUCATION. SO, OUR THOUGHT IN OPINIONS ARE IF YOU ADJUST FOR EDUCATION IN THE MODEL AND YOU ALSO ADJUSTED YOUR COGNITIVE SCORES FOR EDUCATION, IT'S A LITTLE MAYBE OVER CONTROLLING. SO THAT WAS OUR RATIONAL. THANK YOU. >> ANY OTHER QUESTIONS? ARE. [ APPLAUSE ] >> I THINK YOU'LL SEE A REALLY BETTER FLOW THAN I EVER PREDICTED FROM RON TO DRENNA AND NOW ARIZONA STATE'S FRANK INFURNA. >> THANK YOU VERY MUCH. MY NAME IS FRANK INFURNA. I'M ASSISTANT PROFESSOR IN THE DEPARTMENT OF PSYCHOLOGY AT ARIZONA STATE UNIVERSITY. TODAY MY TALK IS FOCUSING ON BIOMARKERS AND THE MEASUREMENT OF SELF MANAGEMENT AND I WILL BE WEAVING IN FIRST OF ALL TALKING ABOUT MY OWN PROGRAM OF RESEARCH AND HOW IT INCORPORATES BIOMARKERS INTO IT AND THEN FOCUS MORE BROADLY ON BIOMARKERS IN GENERAL. I'D LIKE TO ACKNOWLEDGE AND THANK THE NATIONAL INSTITUTE ON AGE COMING HAS BEEN SUPPORTING A PROJECT I WILL BE DISCUSSING PRIMARILY TODAY AND ALSO MY COLLEAGUES AT ASU FOR THEIR INSIGHTFUL COMMENTS AND FEEDBACK ON THIS PROJECT AND REALLY RELATED PROJECTS. SO, HERE IS MY BRIEF OUTLINE IN TERMS OF WHAT I'LL BE DISCUSSING TODAY. SO FIRST, I WILL BE DISCUSSING SELF-MANAGEMENT AND THE CONTEXT OF CHILDHOOD ABUSE AND FOCUSING ON PSYCHOSOCIAL CONSEQUENCES BUT ALSO INTERVENTION IMPLICATIONS AND HOW WE ARE IN THE FIELD CURRENTLY ON INTERVENTION AIMED AT IMPROVING ONE'S CAPACITY FOR SELF-MANAGEMENT IN THE CONTEXT OF CHILDHOOD ABUSE. AND THEN, FOCUS MORE BROADLY ON BIOMARKERS IN THE MEASUREMENT OF SELF-MANAGEMENT WITH THE FOCUS ON IMPORTANCE OF THE TIME-SCALE AND ALSO RELATION TO CHRONIC ILLNESS. SO MY BACKGROUND IS IN DEVELOPMENTAL PSYCHOLOGY. SO I'M INTERESTED IN THAT A LITTLE BIT OR CONCEPTUALIZING DEVE AS A LIFELONG ACCUMULATIVE PROCESS WITH EARLY LIFE EXPERIENCES BOTH POSITIVE AND NEGATIVE HAVING POTENTIAL IMPLICATIONS FOR ONE'S DEVELOPMENT INTO ADULTHOOD AND OLD AGE. AND THEN THINKING ABOUT CHILDHOOD ABUSE IN THE FORM OF EMOTIONAL, PHYSICAL OR SEXUAL ABUSE, CAN HAVE ENORMOUS RAMIFICATIONS FOR DEVELOPMENT INTO NOT ONLY CHILDHOOD AND ADOLESCENCE BUT INTO MID LIFE AND OLD AGE. AND SO, POPULATION ESTIMATES OF CHILDHOOD ABUSE ARE THE LEADING CAUSES OF MORTALITY IN THE UNITED STATES. CHRONIC CONDITIONS DEPENDING ON THE SURVEY OR THAT YOU LOOK AT AROUND 20% OF THE POPULATION EXPERIENCED SOME FORM OF CHILDHOOD ABUSE BEFORE THE AGE OF 18. AND THIS IS NOT SOMETHING THAT JUST ENDS IN CHILDHOOD ADOLESCENCE BUT HAS THE CAPACITY TO FOLLOW THE INDIVIDUALS THROUGHOUT THE COURSE OF THEIR LIFE. COLLEAGUES AT THE MAYO CLINIC ASSOCIATED WITH ASU, WE HAVE BEGINNING DISCUSSIONS ON HOW INDIVIDUALS WHO ARE GOING TOWARDS MAJOR TRANSPLANTS, WHICH IS LUNG AND KIDNEY AND LIVER TRANSPLANTS, THE CASE OF CHILDHOOD ABUSE CONTINUES TO SHOW UP IN TERMS OF INFLUENCING THEIR DAY-TO-DAY DECISIONS AND THEIR LIFETIME -- THROUGHOUT THE COURSE OF THEIR LIFE. SO WHERE DOES THE ROLE OF SELF-MANAGEMENT COME IN ALL OF THIS? SO THERE IS MANY DEFINITIONS THROUGHOUT THE LITERATURE IN TERMS OF WHAT IS SELF-MANAGEMENT AND IN THE CONTEXT OF CHILDHOOD ABUSE, WE BROADLY DEFINED SELF-MANAGEMENT AS ONE'S ABILITY TO MANAGE THE PSYCHOSOCIAL CONSEQUENCES OF DAILY LIVING INHERENT WITH CHILD ABUSE. SO IT'S TWO PARTS. THE FIRST PART IS THIS AND THE SECOND PART INVOLVES MULTIDIMENSIONAL APPROACH OF COMBINING BIOLOGICAL, PSYCHOLOGICAL AND SOCIAL INTERVENTION TECHNIQUES WITH THE GOAL OF MAXIMIZING SELF-REGULATORY PROCESSES. SO, NEXT I'LL BE DISCUSSING WHAT ARE THE PSYCHOSOCIAL CONSEQUENCES OF CHILD ABUSE AND THEN I'LL SET UP DISCUSSING THE INTERVENTION THAT WE'RE CURRENTLY IN THE FIELD. SO FOR THE IMPLICATIONS OF THE AFFECTS OF CHILDHOOD ABUSE ARE WIDE RANGING LEADING TO INCREASED UTILIZATION OF HEALTH CARE AND SOCIETAL RESOURCES, INDIVIDUALS ARE INCREASED RISK FOR LIFETIME SUBSTANCE ABUSE PROBLEMS, ALCOHOL AND TOBACCO AND ALSO INDIVIDUALS MORE LIKELY TO REPORT TRAUMIC AND PSYCHOLOGICAL SYMPTOMS SUCH AS DEPRESSIVE SYMPTOMS AND CHRONIC PAIN. AND FURTHERMORE, INDIVIDUALS WHO REPORT HIGH LEVELS OF CHILDHOOD ABUSE INCREASED RISK FOR EARLY DISEASE ONSET AND DECLINED PHYSICAL HEALTH. SO WHAT ARE SOME OF THE POSSIBLE MECHANISMS MAY BE DRIVING THIS ASSOCIATION AS A WAY TO INFORM INTERVENTIONS TO IMPROVE INDIVIDUALS LIVES AND RESERVES THIS RELATIONSHIP? SO VARIOUS MECHANISMS HAVE BEEN CONSIDERED THROUGHOUT THE LITERATURE, SO FOR ONE, BIOLOGICAL FACTORS SUCH AS INFLAMMATION, INDIVIDUALS REQUIRE HIGHER LEVELS OF CHILD ABUSE AND ELEVATED LEVELS OF INFLAMMATION ACROSS VARIOUS MARKERS AND ALSO IL6. THIS HAS BEEN SHOWN ACROSS LIFE COURSE. SECOND, POSSIBLE MECHANISM AND ONE THAT MY RESEARCH TEAM ARE MOST INTERESTED IN IS LOOKING AT SOCIAL RELATIONSHIPS. OUR RESEARCH AND SAMPLES WE FOUND THAT CHILDHOOD ABUSE IS ASSOCIATED LOWER LEVELS OF FAMILY SUPPORT OF HAVING FEWER INDIVIDUALS TO CONFIDE IN OR ABILITY TO GO TO INDIVIDUALS IN TERMS OF HAVING RETAINING AND INFORMING POSITIVE TIES. BUT ALSO CHILDHOOD ABUSE IS ASSOCIATED WITH HIGHER LEVELS OF INCREASED LEVELS OF FAMILY STRAIN. SO RELATIONSHIPS CHARACTERIZED BY MORE STRAIN AND ARGUMENTS. AND LASTLY, WE FOUND CHILDHOOD ABUSE IS ASSOCIATED WITH INDIVIDUALS SOCIAL, EMOTIONAL REGULATION CAPACITIES WITH SOCIAL AND EMOTIONAL REGULATION AS THE ABILITY TO EFFECTIVELY REGULATE DAILY EMOTIONS IN RELATION TO SPECIFIC STIMULI. SO WE FOUND IN A DAILY DIARY STUDY WHERE PARTICIPANTS ARE GIVEN A TABLET FOR 30 DAYS AND ASKED TO REPORT ON THEIR DAILY WELL-BEING AND ALSO THEIR POSITIVE AND NEGATIVE EVENTS THAT INDIVIDUALS REPORTING HIGHER LEVELS OF CHILDHOOD TRAUMA WERE MORE LIKELY TO REPORT LOWER DAILY WELL-BEING AND ALSO A STRONGER DECLINE IN COGNITIVE AFFECT ON DAYS WHEN THEY REPORTED NEGATIVE EVENTS. IT COULD HAVE BEEN AN ARGUMENT WITH FAMILY OR FRIEND OR A STRESSFUL DAY AT WORK OR OTHER DOMAINS. ALSO INDIVIDUALS REPORTING HIGHER LEVELS OF CHILDHOOD ABUSE WERE REACTING TO POSITIVE EVENTS AS WELL SO STRONGER INCREASE IN POSITIVE DAYS WHEN THEY COULD BE A MEANINGFUL RELATIONSHIP OR CONVERSATION WITH A FAMILY MEMBER. SO THIS SUGGESTS THAT INDIVIDUALS ARE MORE RESPONSIVE TO THE SOCIAL CONTEXT IN TERMS OF POSITIVE AND NEGATIVE DAILY EVENTS WHICH COULD PROVIDE SOME INSIGHTS INTO INTERVENTION IMPLICATIONS. SO COMING BACK TO BROAD DEFINITION OF SELF-MANAGEMENT IN THE CONTEXT OF CHILDHOOD ABUSE UP TO THIS POINT, FOCUSED MOSTLY ON WHAT ARE THE CONSEQUENCES AND POSSIBLE MECHANISMS UNDERLYING THIS RELATIONSHIP AND NEXT I'D LIKE TO FOCUS ON THE COMPONENT IN TERMS OF INTERVENTION APPLICATIONS SO THE SOBERING REALITY OF PREVALENCE AND CONSEQUENCES OF CHILDHOOD ABUSE HIGHLIGHT NEED FOR INTERVENTIONS AT THE UNIVERSITY -- AIMED AT REVERSING AFFECTS. WHAT ARE WAYS TO HELP INDIVIDUALS WHO EXPERIENCE CHILDHOOD ABUSE TO BETTER MANAGE THESE PSYCHOSOCIAL CONSEQUENCES AND ALSO DALE LIVING? SO THIS IS THE PROJECT THAT WE CURRENTLY IN THE FIELD ON AND GRACIOUSLY SUPPORTED BY NATIONAL INSTITUTES ON AGING. AND SO HERE IS OUR CONCEPTUAL MODEL IN THAT WHAT I HAVE BEEN FOCUSING ON UP TO THIS POINTED IS THIS SLIDE. ,IS CHILDHOOD ABUSE IS MENTAL AND PHYSICAL HEALTH AND THE ROLE THAT SOCIAL RELATIONSHIPS PLAY IN THIS ASSOCIATION. WHAT I WOULD NEXT LIKE TO TALK ABOUT IS THIS NEXT PART IN TERMS OF LOOKING AT THE SAMPLE OF INDIVIDUALS IN MID LIFE, AGES 45-70 AND THE FOCUS ON SOCIAL INTELLIGENCE INTERVENTION WHICH IS AIMED AT IMPROVING ONE'S SOCIAL RELATIONSHIP QUALITY FOR ONE'S ABILITY TO RETAIN AND INFORM NEW SOCIAL TIES AND HOW THIS CAN HAVE A AFFECT ON IMPROVING MENTAL AND PHYSICAL HEALTH. SO OUR APPROACH IS MULTIMODAL. SO WE HAVE OUR FOLLOW UPS WHERE INDIVIDUALS ARE GIVEN SELF REPORT QUESTIONNAIRES ACROSS A WIDE RANGE OF ITEMS. WE ALSO HAVE COLLECT SALIVA SAMPLES FROM PARTICIPANTS AT EACH OF THESE FOUR ASSESSMENTS THAT WILL EVENTUALLY BE ANALYZED FOR VARIOUS BIOMARKERS. I'LL GET INTO MORE DETAIL LATER. AND THEN, ALSO WE HAVE PARTICIPANTS AT THE PRE AND POST TEST COMPLETING DAILY DIARIES FOR TWO CONSECUTIVE WEEKS SO WE CAN GET AT ONE'S DAILY WELL-BEING AND ALSO THEIR EMOTIONAL REACTISTS TO DAILY POSITIVE AND NEGATIVE EVENTS AND ALSO A SUBSET WILL BE COMPLETING QUALITATIVE INTERVIEWS BOTH THE INDIVIDUAL GOING THROUGH OR INVOLVED IN THE INTERVENTION AND THEIR PARTNERS SO WE CAN BETTER EXAMINE VARIOUS COMMUNICATION PROCESSES THAT MAYBE INFLUENCINGS CHANGES THAT WE MAY BE OBSERVING. SO GETTING A MORE IN-DEPTH EXAMINATION OF WHAT IS HAPPENING. SO WHY SOCIAL INTELLIGENCE TRAINING? SO FOR ONE, IN OUR EMPIRICALLY, WE OBSERVED THAT SOCIAL RELATIONSHIPS MEDIATE THE ASSOCIATION BETWEEN CHILDHOOD ABUSE AND HEALTH. BUT WE VIEW OR HYPOTHESIZED THAT SOCIAL RELATIONSHIPS ARE IMPROVEMENTS AND MAY BE THE INITIATOR OR DRIVER INCREASED IMPROVING ONE'S CAPACITY TO NAVIGATE THEIR SOCIAL WORLD THROUGH IMPROVING SOCIAL RELATIONSHIP QUALITIES OR CHARACTERIZED BY LESS CONFLICTS AND ALSO INCREASING EMOTIONAL SUPPORT. SO FOR EXAMPLE, AS A MEANS TO REDUCE DAILY STRESSERS, THROUGH INCREASING ONE'S CAPABILITY FOR THE RAPID RESTORATION OF SOCIAL WELL-BEING WITH DOWNSTREAM HEALTH AFFECTS. SO SOCIAL INTELLIGENCE TRAINING IS COMPRISED OF FOUR CORE SOCIAL COGNITIVE PRINCIPLES FOR THE HUMANIZATION OF SOCIAL RELATIONS. SO CONSIDERING VIEWING AN INDIVIDUAL IS NOT AN OBJECT BUT AN INDIVIDUAL AND HUMAN BEINGS. REDUCING AUTOMATIC THOUGHTS IN BEHAVIORS TOWARDS OURSELVES AND OTHERS AND AUTOMATIC PROCESSES THAT MAY BE OCCURRING IN TERMS OF HOW WE GROUP OR LOOKING AT NORMS, INDIVIDUALS. TRYING TO REDUCE THESE THOUGHTS, THESE UNCONSCIOUS PROCESSES AND CONTENDING THAT EACH INDIVIDUAL IS UNIQUE AND ALSO THAT SOCIALLY INTELLIGENT BEHAVIOR IS A CHOICE. SO THE INTERVENTION IS DELIVERED ONLINE AND IS COMPRISED OF 42, 10-15 MINUTE VIDEOS AND THIS IS THROUGH THE SOCIAL INTELLIGENCE INSTITUTE. SO HERE IS THE WEBSITE FOR THE SOCIAL INTELLIGENCE INSTITUTE THAT PROVIDES WAY MORE DETAIL THAN I CAN GIVE IN THIS TALK ABOUT THE INTERVENTION AND WHAT IT IS COMPRISED OF AND JUST IGNORE WHAT THE SCREENSHOT IS. IT WAS 6:45 THIS MORNING. NOT 4:00. I DID GET SOME SLEEP. SO THIS COULD GIVE A LOT OF DETAILS IN TERMS OF DIFFERENT MODULES AND THE BACKGROUND OF HOW WE HAVE DEVELOPED THIS AND THIS IS THROUGH A COLLEAGUE WHO SPEARHEADED THIS COMPONENT. SO THE FOUR METACOGNITIVE PRINCIPLES ORGANIZED AROUND 7 SCHEMATIC MODULES. SO THERE ARE SIX SESSIONS THAT INDIVIDUALS GO THROUGH IN EACH SESSION. WE WANT OUR PARTICIPANTS TO GO THROUGH THIS OVER THE COURSE OF 6-8 WEEKS. SOME PEOPLE HAVE GONE THROUGH IT THROUGH TWO WEEKS. WE TOLD THEM NOT TO. BUT, CAN'T STOP PEOPLE FROM DOING WHAT THEY WANT TO DO SOMETIMES. BUT, SO THE 7 MODULES ARE FOCUSED ON NEUROPLASTICITY. SO THE REWIRING OF THE BRAIN OR THE CAPACITY FOR US TO REQUIRE OUR BRAIN AND HOW WE -- REQUIRE OUR BRAIN AND VIEW THE WORLD. OUR UNCONSCIOUS AND CONSCIOUS PROCESSES SO WHETHER OR NOT WHEN WE VIEW INDIVIDUALS DO WE GROUP THEM OR STEREOTYPE THEM BASED ON THEIR GENDER OR THEIR SKIN TONE? EMPATHY, PERCEPTIVE TAKING. ARE WE ABLE TO EFFECTIVELY GAUGE OTHER INDIVIDUALS FEELINGS AND THE THOUGHTS AND WHAT THEY ARE GOING THROUGH? IN-GROUP, OUT-GROUP, THIS IS US VERSUS THEM MENTALITY. FACE-TO-FACE AND ONLINE COMMUNICATIONS WITH THE ADVENT OF TECHNOLOGIES, TWITTER, FACEBOOK, AND ANY OTHER WAY TO COMMUNICATE ONLINE AS OPPOSED TO FACE-TO-FACE COMMUNICATION HIGHLIGHTS ADVANTAGES OF SITTING DOWN AND HAVING A MEANINGFUL FACE-TO-FACE CONVERSATION WITH AN INDIVIDUAL. SOCIAL SCHEMA FORMATION FROM PAST EXPERIENCES. SO HOW OUR PAST EXPERIENCES IN ADULTHOOD AND AULSO IN CHILDHOOD AND ADOLESCENCE COULD CONTINUE TO INFLUENCE ON OUR SOCIAL RELATIONSHIP QUALITY AND THE FORMATION OF SOCIAL RELATIONSHIPS IN ADULTHOOD AND OLD AGE AND THE CHOICE OF SOCIAL INTELLIGENCE IS TO RELATE. SO THIS IS THE BREAKDOWN OF -- WE ARE RECRUITING PARTIS FROM AN EXISTING DATASET. SO IN 2009, COLLEAGUES FROM ASU COLLECTED DATA ON 800 PARTICIPANTS FROM THE METROPOLITAN AREA WHO WERE IN MID LIFE AND BASED ON THAT SAMPLE, 557 INDICATED THAT THEY ARE INTERESTED IN FUTURE RESEARCH STUDIES AND THEN FROM THAT, WE ARE DETERMINING THEIR LEVEL OF EARLY-LIFE ADVERSITY. SO CHILDHOOD ABUSE IS OUR KEY MODERATING VARIABLE AND STUDY. AND THEN FROM THAT, WE WILL HAVE 100 INDIVIDUALS FROM THE MOD ROOT TO HIGH LEVELS OF CHILDHOOD ABUSE AND 100 IN THE LOW GROUP AND THEN WE'LL DIVIDE THEM 100 INTO INTERVENTION AND 100 INTO THE CONTROL GROUP. AND SO WE ARE CURRENTLY IN THE FIELD SO HOPEFULLY, IN THE FUTURE, YOU'LL SEE SOME RESEARCH COMING OUT FROM THIS STUDY. SO INCORPORATING BIOMARKERS PLAYING INTO THIS. WITHIN THIS STUDY, WE ARE FOCUSING ON TWO IN PARTICULAR. SO DHEAS WHICH SAY MARKER THAT HELPS IN RECOVER FRESTRESSERS BY MITIGATING AFFECTS OF INFLAMMATION AND OXIDATIVE STRESS AND ALSO IL6 WHICH IS RELEASED BY IMMUNE CELLS TO PROMOTE INFLAMMATORY RESPONSE. AND SO THESE MARKERS WERE TIME POINTS, PREAND-POST AND 3-6 MONTH FOLLOW-UP. THESE WERE MARKERS THAT CHANGE OVER A LONGER TIME SCALE AND HAVE BEEN SHOWN TO BE RELIABLE AND MODIFIABLE THROUGH PREVIOUS INTERVENTIONS THROUGH VETERAN COLLEAGUES AND HAVE SHOWN IMPROVEMENTS OR DECLINES IN IL6 OVER A PERIOD OF THREE MONTHS AND INCREASES IN DHEAS OR HIGHER LEVELS OR BETTER FROM BETTER FUNCTIONING. SO AT THIS POINTED, I HAVE FOCUSED PRIMARILY ON LOOKING AT SELF-MANAGEMENT IN THE CONTEXT OF CHILDHOOD ABUSE AND WITHIN WITHIN THE CONTEXT OF RESEARCH PROGRAMS AND NEXT I LIKE TO FOCUS ON BIOMARKERS IN THE MEASUREMENT OF SELF MANAGEMENT AND HOW THEY CAN BE INCORPORATED INTO DIFFERENT RESEARCH DESIGNS AND REALLY EMPHASIZING THE IMPORTANCE OF THE TIME SCALE OF INTEREST OR HOW THE CHANGE IS BEING CHARACTERIZED WITHIN THE STUDY CAN HAVE IMPORTANT IMPLICATIONS FOR THE MARKER THAT YOU'RE MOST INTERESTED IN. BECAUSE BRILLIANT OCCURS ACROSS MULTIPLE LEVELS OR TIME SCALES, SECONDS, MINUTES, HOURS, DAYS, WEEKS, MONTHS, YEARS, DECADES. NUMEROUS WAYS OR TIME SCALES THAT CHANGE OCCURS AND THESE CAN -- IT'S MORE SO LOOKING AT SHORT OR LONG TERM PROCESSES OF CHANGE AND WHEN FOCUSING ON SHORT-TERM PROCESSES OF CHANGE, A LOT OF LITERATURE HAS BEEN FOCUSING ON OR LOOKING AT PHYSIOLOGICAL REACTIVITY TO DAILY AND ALSO LAB-BASED STRESSERS WITH AN EMPHASIS ON THE HPA AND SAM AXIS. SO THIS IS THE TWO MARKERS THAT HAVE BEEN HEAVILY STUDIED OR LOOKING AT CORTISOL AND ALPHA AMIA LACE THAT FOLLOW THIS PATTERN THAT WAS CORTIZOL AND THE TYPICAL AWAKENING RESPONSE WITHIN 45 MINUTES AND THEN A STEADY DECLINE OVER THE COURSE OF THE DAY WHERE ALPHA AMIA LAYS SHOWS A OPPOSITE PATTERN. AND IN TERMS OF LOOKING AT PHYSIOLOGICAL REACTIVITY IN DAILY AND LAB-BASED STRESSERS, RESEARCH WITHIN THE CONTEXT OF CHILDHOOD ABUSE SHOWN THAT IN THE LAB BASED, DURING THE COURSE OF THE LAB BASED STRESSOR OCCURS THROUGH THIS TIME INTERVAL HERE, WE SEE THAT INDIVIDUALS REPORTING HIGHER LEVELS OF CHILDHOOD ABUSE SHOWS INCREASED RESPONSE TO CORTISOL, TO ACTH AND ALSO INCREASED HEART RATE THERE IS RESEARCH FOCUSING ON ADOLESCENCE. WHEN SEARCH LOOKED AT EXAMINING THE LAB-BASED STRESSORS IN THE ADULTS AND LOOKING AT CHILDHOOD ABUSE AS THE KEY TO MODERATOR AND THIS RESEARCH HAS SHOWN MORE BLUNTED OR LESS INCREASE IN CORTISOL AS A FUNCTION OF LAB-BASED STRESSORS. SO MORE DEVELOPMENTALLY OVER THE COURSE TIME AND CONTINUED EXPOSURE TO STRESSORS MAY HAVE A SIGNIFICANT INFLUENCE ON ONE REACTIVITY. SO MOVING ON. I'D LIKE TO FOCUS IN ON RESEARCH FROM STEVE AND COLLEAGUES LOOKING AT CAREGIVERS OF INDIVIDUALS WITH DEMENTIA COLLECTING DATA ON CAREGIVERS FOR 8 CONSECUTIVE DAYS AND ALSO ASSESSING THEIR TAKING SALIVA MULTIPLE TIMES THROUGHOUT THE COURSE OF THE DAY TO EXAMINE HOW DOES THE UTILIZATION OF ADULT DAY CARE SERVICES CAN INFLUENCE PHYSIOLOGICAL FUNCTIONING ACROSS THE COURSE OF THE DAY. AND THEY FOUND THAT INDIVIDUALS WHO DURING NONADULT SERVICE DAYS, INDIVIDUALS IN THE LOW CAR GROUP AND THE MEDIUM CORTIZOL WEAKENING RESPONSE GROUP SHOWED A BLUNTED RESPONSE OR INCREASE IN CORTISOL AT THE BEGINNING OF THE DAY. ON DAYS WHEN THEY USED ADULT DAY CARE SERVICES, THEY SHOWED THIS TYPICAL INCREASE IN THE CORTISOL AWAKENING. SO IT IS SHOWING THAT DEPENDING ON ONE'S -- WHAT IS HAPPENING THROUGHOUT THE COURSE OF THE DAY I'M SHOWING THESE MARKERS ARE FLEXIBLE OR IN TERMS OR SENSITIVE TO CHANGES THAT ARE OCCURRING THROUGHOUT THE COURSE OF THE DAY. AND THEY ALSO FOUND THAT DHES WAS HIGH OR DAYS FOLLOWING ADULT DAY SERVICES. AND THAT NOVEMBERS UNISON OR ASSOCIATED WITH HIGHER LEVELS IN POSITIVE AFFECTS. SO THE BLANKING LINE IS DHEAS AND THE RED LINE IS POSITIVE AFFECTS ON DAYS WHEN DHEAS INCREASED SUBSEQUENT INCREASES OR COVARIATION WITH POSITIVE AFFECT. NEXT FOCUSING IN ON MARKERS OR EXAMINING IMPROVEMENTS IN KEY MARKERS WITH PHYSIOLOGICAL FUNCTIONS. PREVIOUS STUDIES FOCUSED MORE ON LOOKING AT MINUTES AND HOURS AND THE DAILY SCHEDULE. THERE IS ALSO RESEARCH SHOWING THAT COGNITIVE BEHAVIORAL STRESS MANAGEMENT CAN LEAD TO IMPROVEMENT TO CORTIZOL DHEAS RATIO OVER THE COURSE OF THREE MONTHS IN THINKING ABOUT DEVELOPMENT OR CHANGES OVER EYE LONGER TIME SCALE. AND SIMILARLY, RESEARCH LOOKING AT TAI CHI CHI ASSOCIATED WITH REDUCED BLOOD PRESSURE AND CORTIZOL LEVELS OVER THE COURSE OF 3 MONTHS. SO NOW, TO KIND OF BRING IT ALL BACK AND FOCUS. MY TALK IN THE FIRST TALK WAS ON SELF-MANAGEMENT IN THE CONTEXT OF CHILDHOOD ABUSE AND LOOKING AT THE PSYCHOSOCIAL CONSEQUENCES AND ALSO LOOKING AT INTERVENTION IMPLICATIONS AND HOW CAN WE REVERSE THIS RELATIONSHIP ON ONE'S SOCIAL RELATIONSHIP? AND ALSO SECOND HALF DISCUSSING MORE SO BIOMARKERS AND THE MEASUREMENT OF SELF-MANAGEMENT AND REALLY IN TERMS OF MOVING FORWARD, THE IMPORTANCE OF ONE'S TIME SCALE OF INTEREST AND THE MARC THEY'RE IS BEST SUITED FOR THE CHRONIC CONDITION OR CHRONIC ILLNESS THAT ONE IS INTERESTED IN AND PHYSIOLOGICAL MARKERS ARE MALLEABLE OR HAVE THE CAPACITY TO CHANGE AND IT IS IMPORTANT TO REALLY THINK ABOUT HOW IT IS THAT IT CAN BE BEST INCLUDED IN ONE'S RESEARCH PROGRAM. THANK YOU. [ APPLAUSE ] >> WE ARE BOTH FROM ASU AND NEVER MET EACH OTHER SO WE HAD A CONVERSATION A WEEK AND A HALF AGO SO GLAD TO MEET YOU. INTRIGUED WITH THIS RELATIONSHIP AROUND WHAT HAPPENS LATER IN LIFE WITH CHILDHOOD TRAUMA AND HOW SOCIAL RELATIONSHIPS MAY MEDIATE THAT TO SOME DEGREE. AND THEN LATER, WHEN YOU WERE TALKING ABOUT THINGS IN THE SOCIAL INTELLIGENCE TRAINING, YOU MENTIONED SOMETHING ABOUT HUMANIZING SOCIAL INTERACTION ACTIONS AND I'M STRUCK WITH THE POWER OF THAT PHRASE AND WHAT THAT IS LOADED WITH. LIKE HOW ARE SOCIAL INTERACTIONS NOT HUMAN? IT MADE ME THINK ABOUT AND THEN I GET CURES IF SOME OF THE THINKING BEHIND THIS DEALS WITH ATTACHMENT DISORDER ISSUES? I HAVE A SON WHO WAS ADOPTED WHEN HE WAS 2 1/2 AND WILL HAD ALREADY BEEN THROUGH A LOT. AND WAS ATTACHMENT DISORDER. YOU DESCRIBE SOME OF THESE THINGS INTERVENED UPON. THEY FIT VERY WELL WITH WHAT HE HAS NEEDED IN ORDER TO HUMANIZE HIS INTERACTION. I GET CURES IF THAT IS INFORMED ANY OF THE THINKING AROUND SOME OF THE CHOICES. >> IT CERTAINLY INFORMED OUR THINKING IN HOW THE INTERVENTION IS, THE COMBINATION OF A SOCIAL COGNITIVE PRINCEELS AND BEHAVIORAL TASKS AND SO AT THE END OF THE MODULES, SO FOR EXAMPLE, ONE OF THEM IS, YOUR TASK IS TO GO OUT AND JUST TALK TO A STRANGER OR START UP A CONVERSATION WITH A STRANGER AS A WAY TO HAVE INDIVIDUALS ACTIVELY ENGAGE IN THEIR SOCIAL WORLD. IF SOME OF THE UNDERGRADS WHO WERE LOOKED AT, OR WHO WERE PART OF THE PROGRAM, THEY TOOK THAT ENTER ACTION WITH PRETTY GIRLS ON THE LIGHTRAIL AT ASU. BUT, MORE SERIOUSLY, THANK YOU FOR THE DELAYED RESPONSE. >> HUMANIZING. >> MORE SERIOUSLY, THINKING ABOUT ATTACHMENT PERIODS. I THINK LOOKING AT HOW IT IS. AND WE GET INTO THAT INTO THE PROGRAM IN TERMS OF LOOKING AT OUR PAST EXPERIENCES AND HOW WE CAN KIND OF RESHAPE OUR THINKING AND PUTTING THEM IN THE CONTEXT TO IMPROVE OUR CURRENT STATE OF SOCIAL RELATIONSHIP QUALITY AND YES, THEY THINK IS IMPORTANT COMPONENT AND SOMETHING WE PLAN TO LOOK AT THAT. >> PEOPLE ON THE PHONE, OR ON THE WEBSITE CAN HEAR US, WE NEED TO SPEAK INTO THE MICROPHONE. AND APPARENTLY, I DON'T KNOW IF THIS IS NOT WORKING, FOR THEM TO HEAR BUT IF THE PRESENTER, WE HAVE BEEN ASKED THROUGH SOMEBODY ELSE'S E-MAIL TO REPEAT THE QUESTION IF THE SPEAKER COULD REPEAT PART OF THE QUESTION IF IT'S A LONG ONE. SO THAT OUR FOLKS ON THE OUTSIDE CAN HEAR AND PARTICIPATE. WHOSE HAND SHOT UP FIRST? >> THANK YOU. CAN YOU HEAR ME? GREAT. SO, I'M A COUPLE'S THERAPIST AND I WAS WONDERING IF YOU LOOKED AT WHETHER THEY HAD ATTACHMENT ISSUES, YOUR PARTICIPANTS HAD ATTACHMENT ISSUES LATER IN LIFE ABOUT ROMANTIC PARTNERS AND SOMEONE WHO HAD EXPERIENCED CHILDHOOD ABUSE, MORE LIKELY TO EXPERIENCE ABUSE AS ADULTS? I KNOW THAT THAT IS TRUE BUT I WONDER IF THAT CHANGES F IT ALSO HAD ABUSE AS A -- IF THAT CHANGES HOW THEY REACT IN SOCIAL SITUATIONS? IF IT MAKES IT WORSE OR HAVE CORRECTIVE EXPERIENCES BY NOT HAVING ADULT ABUSE? >> THE QUESTION WAS TWO PARTS, SO FIRST FOCUSING ON WHETHER CHILD ABUSE LEADS TO MORE ABUSE IN PARTNER ROMANTIC RELATIONSHIPS AND ALSO MORE SO ABOUT HOW THE COUPLES ARE INTERACTING, MOSTLY THE SECOND PART, RIGHT? [ OFF MIC ] >> I'M NOT ENTIRELY -- WE SUPERINTENDENT LOOKED AT THAT IN OUR DATA AND I'M NOT ENTIRELY FAMILIAR WITH THERE HAS BEEN -- I'M SURE THERE HAS BEEN RESEARCH. IT ISN'T AN AREA I REALLY LOOKED AT. BUT SOMETHING THAT CERTAINLY COULD BE DONE AND WITHIN THIS STUDY AS WELL THAT WILL BE TARGETING BECAUSE OF THE QUALITATIVE INTERVIEWS WE'LL HAVE BOTH THE PERSON GOING THROUGH THE INTERVENTION AND ALSO THEIR SPOUSE OR PARTNER TO EXAMINE WHETHER OR NOT THERE ARE DIFFERENCES IN THEIR COMMUNICATION PROSSYSTEM. SO WE'LL EXAMINE THE STATE OF THEIR COMMUNICATION BEFORE THE INTERVENTION AND ALSO WHETHER OR NOT IT HAS CHANGED OR DEVELOPED OVER THE COURSE OF THE INTERVENTION. SO IMPORTANT THINGS TO CONSIDER AND DEFINITELY WILL KEEP THOSE IN MIND. THANK YOU. >> THANK YOU FOR YOUR LECTURE. I'M A PH.D. STUDENT AT HOPKINS AND MY RESEARCH DISSERTATION IS ON SELF-MANAGEMENT AND SELF-EFFICACY AND BIOMARKERS. I JUST WONDERING, I CAN'T REMEMBER, ARE YOU ALSO HAVING A BIOMARKER COMPONENT IN YOUR INTERVENTION? >> YES. >> SO YOU'RE LOOKING TO SEE IF YOUR INTERVENTION DECREASES THEIR INFLAMMATORY BIOMARKERS. >> RIGHT. CORRECT. WE WILL BE COLLECTING SALIVA AT THE PRE AND POST AND AT THE 3 AND 6 MONTH FOLLOW-UP TO SEE WHETHER IS THERE SHORT-TERM AND LONG-TERM EFFECTS. >> AND I'M CURES WHAT MADE YOU CHOOSE IL6 AND AND DHES AS OPPOSED TO OTHER BIOMARKERS OR INCREASING THE PANEL? BECAUSE OBVIOUSLY THERE IS SO MANY AND THERE IS ALSO PRO, AND ANTI-INFLAMMATORY. I'M CURES ABOUT YOUR THINKING ON THAT. >> THERE IS QUITE A FEW TO CHOOSE FROM IN TERMS OF WHICH BIOMARKERS TO INCLUDE. WE CHOSE THESE TWO BECAUSE IN PREVIOUS INTERVENTIONS, WE -- THEY HAVE BEEN SHOWN TO CHANGE OR THEY ARE RELIABLY ABLE TO CHANGE AND SHARE A COMMON OUTCOME OF CHILDHOOD ABUSE HAVE BEEN SHOWN TO BE MECHANISMS OR MEDIATORS. AND ALSO THE MORE DESIGN ISSUES, THERE IS ONLY SO MUCH MONEY TO REALLY -- WE WEREN'T ABLE TO DO A FULL PANEL AND IN TERMS OF BEING ABLE TO GET TO THE PARTICIPANTS AND COLLECT THE SALIVA WAS A LOT MORE STRAIGHTFORWARD AS OPPOSED TO BRINGING IN OR HAVING THEM COME TO AS. AND COLLECT BLOOD. SO WE CAN JUST WALK OVER TO THE NEXT BUILDING AND GIVE THEM SAMPLES WHEN THEY ARE READY TO ANALYZE. SO CERTAINLY IT WOULD BE GREAT TO REALLY EXPAND IT OUT BUT THESE SORTS OF DIFFERENT DESIGN CAPACITIES, YES, SORT OF DECISIONS HAVE TO BE MADE, YES. >> YES, SANDRA AT THE UNIVERSITY OF MARYLAND SCHOOL OF PUBLIC HEALTH COLLEGE PARK. AND I HAVE A QUESTION ABOUT YOUR TIME SCALE. IT SAYS YOU MENTIONED THE IMPORTANCE OF IT. COULD YOU GIVE SOME EXAMPLES OF -- FOR EXAMPLE, LIKE SOME OF YOUR REACTIVITY IS IN A VERY SHORT-TERM WITHIN AN HOUR OR TWO BUT OTHER ONES MIGHT BE OVER A LONGER PERIOD. IS THAT WHAT YOU'RE MEANING? >> RIGHT. SO THE QUESTION WAS FOCUSING ON THE IMPORTANCE OF THE TIME SCALE. SO DEPENDING ON YOUR RESEARCH QUESTION AND MY PROGRAMS ARE INDIVIDUALS WITH A HISTORY OF CHILDHOOD ABUSE MORE PHYSIOLOGICALLY REACTIVE TO DAILY STRESSORS? SO THEN IN TERMS OF DESIGNING THE RESEARCH STUDY, WE WANT TO MAYBE COLLECT SALIVA FOUR TIMES OVER THE COURSE OF THE DAY TO EXAMINE WHETHER OR NOT IT INFLUENCES THEIR PATTERN WHEREAS IN INTERVENTION WE ARE MORE INTERESTED IN INFLAMMATORY MARKERS THAT ARE LIKELY TO CHANGE OVER A TIME PERIOD OF MONTHS. SO THOSE OBSERVATIONS WILL BE MORE SPACED OUT. >> YES, I'M MANAGING A WEB-BASED PROGRAM FOR THE AMERICAN TIME USE SURVEY WHICH HAS INDIVIDUAL DAYS. SO YOU CAN GET VERY DETAILED INFORMATION AT A NATIONAL LEVEL FOR PEOPLE IN THE UNITED STATES ON A DAILY BASIS. AND OTHER STUDIES HAVE DONE IT WITH MONTHLY OR THROUGH THE YEARS. SO THERE ARE A NUMBER OF ACTUAL NATIONAL STUDIES OUT THERE THAT HAVE INFORMATION THAT COULD BE USEFUL. >> THANK YOU. >> ONE MORE QUESTION. >> HI. I'M A POST DOCTORATE FELLOW AT NHGR I AND WE ALSO ARE TRYING TO DO STUDY TO IMPROVE SOCIAL RELATIONSHIP IN CAREGIVERS TO IMPROVE THEIR HEALTH STATE US AND ALSO USING BIOMARC TOURS ASSESS THEIR PHYSICAL STATUS AND I THINK YOUR SOCIAL INTELLIGENCE INTERVENTION IS VERY INTERESTING AND I WONDER IF YOU SAW ANY IMPROVEMENT IN THEIR HEALTH BEHAVIOR AFTER RECEIVING THOSE INTERVENTIONS? >> SO, RIGHT NOW WE HAD 25 PEOPLE WHO HAVE GONE THROUGH THE INTERVENTION AND CONTROL SO WE HAVEN'T BEEN ABLE TO LOOK AT THAT QUITE YET BUT WE CERTAINLY HAVE MEASURES OF THAT PRE-TEST AND POST-TEST AND THEN THE FOLLOW-UP. IT WILL BE INTERESTING TO SEE WHETHER OR NOT THIS DOES INFLUENCE THEIR HEALTH RELATED BEHAVIORS. IT IS DEFINITELY ON THE LIST OF QUESTIONS TO BE ASKED. THANK YOU. >> ONE, I'LL SEE ABOUT MAKING IT COOLER AFTER I TURN THINGS OVER TO OUR NEXT PRESENTER. ONE OF THE THINGS I NOTICED FROM THE 20-YEAR HICKMAN VISION AND SUBSEQUENT PRESENTATIONS, ARE THE -- AND AN ISSUE THAT INFLUENCES US ALL ARE THE DESIRE FOR THE MOST COMPREHENSIVE OR EXHAUSTIVE BIOMARKERS, AND YET THE CONSTRAINTS OF PATIENT SAFETY, PATIENT OVERLOAD, PATIENT BURDEN. >> PATIENT BLOOD. >> AND TRANSPORTATION ISSUES AND EVERYTHING ELSE. AND SO WHEN WE GET TO BRAINSTORMING, I HOPE WE MIGHT SPEND SOME TIME THINKING ABOUT THE INTERSECTION OF THE MOST USEFUL BIOMEASURES OR IMAGING THAT WE CAN GET CROSSED WITH CONSIDERATION OF PATIENT OR PARTICIPANT TIME AND BURDEN. THAT'S ALL. S THANK YOU. KEEP THAT IN MIND BECAUSE IT KEEPS COMING UP. AND I'M SURE IT ALSO COMES UP IN WEEKLY RESEARCH STAFF MEETINGS TOO. FIRST, THOUGH, THANK YOU, FRANK. [ APPLAUSE ] BOTH FRANK AND OUR NEXT PRESENTER ARE OPPNET GRANTEEES FROM THIS FISCAL YEAR'S ADMINISTRATIVE SUPPLEMENTS ON THESE BASIC MECHANISMS OF SELF-MANAGEMENT. SO PLEASE WELCOME SARAH SARAH SANDERS JASER FROM VANDERBILT UNIVERSITY. >> THANK YOU I'M EXCITED TO BE HERE AND LOOKING FORWARD TO THE ROUNDTABLE DISCUSSION LATER AND HEARING EVERYONE'S TALK. SO TODAY I'M GOING TO BE TALKING ABOUT SLEEP DURATION AND QUALITY AND SELF-MANAGEMENT OF TYPE I DIABETES. I AM A CLINICAL PSYCHOLOGIST WITH EXPERTISE IN PEDIATRIC PSYCHOLOGY AND MUCH OF MY WORK HAS BEEN FOCUSED ON SELF AND FAMILY MANAGEMENT IN USE WITH TIME ONE DIABETES. SO I'M GOING TO GIVE YOU AN OVERVIEW OF THE TASK OF SELF-MANAGEMENT IN TYPE I DIABETES AND HIGHLIGHT THE KNOWN BARRIERS AND FACILITATORS AND THEN TALK ABOUT POTENTIAL AFFECTS OF SLEEP ON DIABETES MANAGEMENT, SHARE SOME PRELIMINARY FINDINGS FROM OUR DATA, DISCUSS THE NEXT STEPS AND SUMMARIZE. SO FOR THOSE OF YOU WHO AREN'T AS FAMILIAR WITH TYPE I DIABETES, IT'S ONE OF THE MOST COMMON CHRONIC CHILDHOOD CONDITIONS. THERE IS APPROXIMATELY 18,000 NEW CASES DIAGNOSED EACH YEAR AND THE INCIDENTS APPEARS TO BE RISING BASED ON NATIONAL DATA. THE MEAN AGE OF ONSET IS 10-14. SO A LOT OF KIDS ARE BEING DIAGNOSED AT A TRICKY DEVELOPMENTAL STAGE. AND DESPITE ADVANCES IN TREATMENT, INCLUDING NEW TECHNOLOGIES AND BETTER INSULINS, THERE IS STILL AN ESTIMATED LOSS OF LIFE EXPECTANCY OF UP TO 13 YEARS. SO A VERY SERIOUS CHRONIC CONDITION. THE GOAL OF TREATMENT IS TO MAINTAIN GLYCEMIC CONTROL AS CLOSE TO NORMAL AS POSSIBLE TO PREVENT ACUTE AND LONG TERM COMPLICATIONS. AND THE MAJORITY OF THIS TREATMENT REGIMEN IS COMPLETED BY THE INDIVIDUAL AND HIS OR HER FAMILY. SO THIS SLIDE SHOWS YOU ALL OF THE TASKS INVOLVED IN SELF-MANAGEMENT FOR TYPE I DIABETES. SO ONE OF THE FRUSTRATIONS THAT WE HEAR FROM PATIENTS AND THEIR FAMILIES IS THAT PEOPLE TEND TO BE MORE FAMILIAR WITH TYPE II DIABETES AND SO, THEY HAVE SOME MISCONCEPTIONS ABOUT MANAGEMENT FOR TYPE I. BUT IT REALLY IS QUITE INTENSIVE AND DEMANDING. SO I'M GOING TO RUN THROUGH THESE SO YOU GET A SENSE OF THIS. SO IT STARTS WITH BLOOD GLUCOSE CHECKS AND PATIENTS ARE EXPECTED TO CHECK THEIR BLOOD 4-5 TIMES A DAY SO WHEN THEY WAKE UP, BEFORE EACH MEAL AND AT BEDTIME. AND THAT REALLY PROVIDES INFORMATION THAT IS NEEDED TO MAKE DECISIONS ABOUT OTHER MANAGEMENT. SO THE NEXT STEP IS BLOOD SUGARS ELECTRONICALLY MONITORING OR PAPER AND PENCIL. THE REASON WE ASK PATIENCE TO DO THAT IS SO THEY CAN SEE TRENDS AND DETERMINE IF THEY NEED TO MAKE ADJUSTMENTS TO THEIR INSULIN. THE NEXT THAT CAN BE QUITE CHALLENGING IS COUNTING CARBOHYDRATES. THE TREATMENT REGIMEN BUILT AROUND TRYING TO MACHINES LIN TO THE CARBOHYDRATE IN TAKE AND SO, EVERY TIME PATIENTS EAT ANYTHING, THEY HAVE TO READ THE LABEL OR LEARN ABOUT HOW MANY CARBOHYDRATES ARE IN THAT FOOD AND THEN ENTER THAT INFORMATION INTO AN INSULIN PUMP OR CALLCULATE A RATIO TO DETERMINE HOW MUCH INSULIN THEY NEED TO GIVE. THAT GOES ALONG WITH THE MEALS AND SNACKS. THIS IS SOMETHING FOR ESPECIALLY FOR TEENS WHO CAN BE SELF CONSCIOUS, AND MAY NOT WANT TO SHARE THAT THEY HAVE DIABETES, THIS IS SOMETHING THAT THEY MIGHT TRY TO AVOID DOING IN FRONT OF OTHERS AND THAT CAN BE REALLY TRICKY IF YOU'RE THINKING ABOUT SCHOOL LUNCHES OR GOING OUT WITH FRIENDS. THEY ARE ALSO GIVING LONG ACTING INSULIN WITH INJECTIONS OR WITH INSULIN PUMP AND THAT IS TO MAINTAIN BLOOD GLUCOSE LEVELS OVERNIGHT AND THROUGHOUT THE DAY. AND ALL THE WHILE THEY ARE MONITORING FOR HYPERAND HYPOGLYCEMIA. SO BLOOD SUGARS THEY NEED TO TREAT AND THEY ARE LEARNING TO RECOGNIZE GLUCOSE PATTERNS AND MAKE ADJUSTMENTS TO THOSE INSULIN DOSES AND IN ORDER TO DO THAT, THEY HAVE TO COMMUNICATE WITH THEIR PROVIDER BETWEEN VISITS AS NEEDED IF THEY FIND THAT THEY ARE WAKING UP LOW EVERY MORNING OR EVERY AFTERNOON BEFORE SNACK THEY ARE HIGH. SO, THERE IS A LOT THAT IS INVOLVED. SO NOT SURPRISING THAT ADHERENCE RATES ARE QUITE LOW ESPECIALLY AMONG TEENAGERS. AND THAT IT IS VERY BURDENSOME FOR FAMILIES. SO WE CAN SEE HERE THAT THE PROPORTION OF PATIENTS NEEDING THE TREATMENT GOALS FALL BACK ONCE YOU GET TO THE TEEN YEARS. SO, THESE DATA WERE BASED ON A1C TARGET A MEASURE OF BLOOD GLUCOSE LEVELS OVER 8-12 WEEKS. AND THESE GOALS HAVE BEEN ADJUSTED AND SO EVEN FEWER ARE MEETING THESE TARGETS NOW BUT AT THE TIME THESE DATA WERE COLLECTED, OVER 60% OF THE YOUNGEST KIDS ONE-5 WERE MEETING THE GOALS AND THAT IS LIKELY BECAUSE AT THAT AGE, PARENTS ARE THE ONES RESPONSIBLE FOR TREATMENT MANAGEMENT AND THEN YOU CAN SEE IN THE MIDDLE CHILDHOOD YEARS, LESS THAN 50% WERE MEETING THE TARGET AND ONCE WE GET TO THE TEEN YEARS, IT'S HOVERING AROUND 20%. SO WE ARE NOT DOING A GREAT JOB HELPING THESE FAMILIES TO MEET THESE TARGETS. AND ONE OF THE REASONS IS THAT SELF MANAGE CEMETERY SO DIFFICULT. SO THE MOST OBJECTIVE MEASURE OF SELF-MANAGEMENT BECAUSE THERE IS SO MANY TASKS INVOLVED, IS HOW OFTEN PEOPLE ARE CHECKING THEIR BLOOD GLUCOSE EACH DAY. THAT FORMS THE BASIS OF ALL THESE OTHER DECISIONS: THE RECOMMENDATION 5 OR MORE TIMES PER DAY. SO THAT WOULD BE THE BLUE AND GRAY LINES. AND AGAIN, YOU CAN SEE HERE THAT THE YOUNGEST AGES, 1-5, THEY ARE CHECKING -- CHECKING 5-6 TIMES A DAY AND SOME ARE PROBABLY CHECKING MORE THAN THEY NEED TO BECAUSE THESE ARE HYPERVIGILANT PARENTS DOING THE CHECKING ESPECIALLY WITH A CHILD THAT YOUNG WHO HAS DIABETES, THE PARENTS ARE WORRIED ABOUT THEM. THEY ARE ON TOP OF THESE THINGS SO CHECKING MULTIPLE TIMES A NIGHT OFTEN TO MAKE SURE THEY ARE NOT HAVING LOW BLOOD SUGARS OVERNIGHT. SO THEN IN THE MIDDLE CHILDHOOD AGES, THEY ARE STILL DOING A FAIRLY GOOD JOB OF CHECKING REGULARLY. YOU SEE IT REALLY DROPS OFF ONCE WE HIT THE TEEN YEARS AND THEN YOUNG ADULTS ARE PROBABLY THE WORST ABOUT THIS. SO IF YOU'RE ONLY CHECKING ONE OR TWO TIMES A DAY IT'S HARD TO MAKE ALL THE OTHER DECISION BUSY WHAT YOU COULD EAT IF YOU'RE ABLE TO PARTICIPATE IN STRENUOUS ACTIVITY BECAUSE YOU'RE ALWAYS TRYING TO BALANCE THE NEEDS OF INSULIN. SO, THERE HAS BEEN A LOT OF LITERATURE LOOKING AT BARRIERS FACILITATORS IN SELF-MANAGEMENT KNOWING THAT THEY DO STRUGGLE A LOT WITH SELF KNOWLEDGEMENT. SO ONE AREA THAT I HAVE BEEN REALLY INVOLVED IN IS THE ROLE OF PAR. AL INVOLVEMENT OF BARRIER OR FACILITATOR. SO AS YOU CAN SEE FROM THE PREVIOUS SLIDES, PARENTAL INVOLVEMENT IS IMPORTANT IT'S WHEN PARENTS STOP BEING AS INVOLVED IN THE TEENAGE YEARS WHEN WE START TO SEE A REAL DROP-OFF IN SELF-MANAGEMENT. WE KNOW THAT CONTINUED INVOLVEMENT IS IMPORTANT THROUGHOUT ADOLESCENCE BUT THAT THE TYPE OF INVOLVEMENT IS REALLY IMPORTANT. SO I HAVE DONE SOME OBSERVATIONAL WORK SHOWING THAT COLLABORATIVE INVOLVEMENT OR WARM PARENTING WHERE THEY ARE TRYING TO WORK TOGETHER WITH THEIR TEEN TO TALK ABOUT DECISIONS AROUND DIABETES MANAGEMENTING THEIR CHILD FOR ANY KIND OF MANAGEMENT THAT IS HAPPENING, THAT IS RELATED TO BETTER OUTCOMES AND GLYCEMIC SCROLL BETTER QUALITY OF LIFE. WHEN THE INVOLVEMENT IS INTRUSIVE OR NAGGING, QUESTIONING THEM A LOT, WHY IS YOUR BLOOD SUGAR SO HIGH, WHAT DID YOUET. >> THAT TYPE OF INVOLVEMENT IS RELATED TO MORE DEPRESSIVE SYMPTOMS AND LOWER-QUALITY OF LIFE IN THE TEENS AND POORER GLYCEMIC CONTROL BECAUSE THEY JUST KIND OF TUNE OUT THINGS. DIABETES BURN SOUGHT A BIG ISSUE. THERE IS SO MANY TASKS INVOLVED IN MANAGEMENT THAT IS IT HARD TO KEEP UP WITH IT ALL AND WILL WE FREQUENTLY HEAR FROM BOTH TEENS AND THEIR PARENTS THAT THEY ARE JUST SICK OF DIABETES AND WISH THEY COULD TAKE A BREAK. THEY ARE TIRED OF DOING ALL THE TASKS. STRESS IS A BIG ISSUE FOR THESE FAMILIES. WE MEASURED THIS IN OUR STUDIES AND THE MOST COMMON SOURCE OF STRESS IS DAILY DIABETES CARE SO IT IS THE SELF-MANAGEMENT PIECE THAT IS IS JUST CHRONIC STRESS OF INSTRUCTING DO ALL OF THESE THINGS EVERY DAY. BUT FOR TEENS, THERE IS ALSO STRESS RELATED TO FEELING DIFFERENT FROM PEERS SO SOME OF THE DEVELOPMENTAL ISSUES YOU MIGHT EXPECT. SEEING PARENTS WORRY ABOUT THEM AND FEELING LIKE THEIR PARENTS ARE NAGGING THEM. AND THEN HEALTH NUMEROUS IS AN AREA THAT SOME OF MY COLLEAGUES AT VANDERBILT HAVE HIGHLIGHTED ADDS BEING IMPORTANT FOR DIABETES AND ESPECIALLY BECAUSE NUMBERS ARE SO INVOLVED IN THE MANAGEMENT. SO SLEEP IS SOMETHING THAT HASN'T BEEN LOOKED AT A LOT IN TYPE I TYPE I DIABETES BUT THAT I'M INTERESTED IN PURSUING AS A POTENTIAL BARRIER AND FACILITATOR TO SELF-MANAGEMENT. SO I'M GOING TALK ABOUT WHY WE THINK IT MIGHT BE IMPORTANT IN THIS POPULATION. SO, LOOKING AUTO DATA FROM -- LOOKING AT DATA FROM THE GENERAL POPULATION, AND OTHER SPECIFIC POPULATIONS THAT MIGHT BE RELEVANT HERE, WE SEE SOME PHYSIOLOGICAL AFFECTS OF SLEEP DISTURBANCES OR INSUFFICIENT SLEEP. SO INOSE BEES ADOLESCENCE, DATA SHOWS THEY ARE HAVE HIGHER BLOOD SUGAR AND INCREASED EVENING CORTIZOL AND GROWTH HORMONE LEVELS AND DECREASED INSULIN SENSITIVITY AND IN ADULTS, POORER GLYCEMIC CONTROL WHEN HEY ARE NOT GETTING S SLEEP. SO THE PIECE THAT I'M MORE INTERESTED IN IS THE BEHAVIORAL AFFECTS OF SLEEP ON DIABETES MANAGEMENT. SO, AGAIN, LOOKING AT DATA IN OTHER POPULATIONS IN THE GENERAL ADOLESCENT POPULATION, WE SEE THAT INSUFFICIENT SLEEP IS RELATED TO POOR FOOD CHOICES. SO THEY ARE CHOOSING FOODS HIGHER IN CALORIES AND CARBOHYDRATES WHICH IS POTENTIALLY AN ISSUE FOR KIDS WITH DIABETES. AND THEY ALSO REPORT LESS PHYSICAL ACTIVITY AND MORE SEDENTARY TIME WHEN THEY ARE GETTING LESS SLEEP. WHICH I THINK WE CAN ALL RELATE TO WHEN YOU'RE TIRED IT'S HARD TO BE MOTIVATED TO MAKE GOOD FOOD CHOICES OR GO OUT AND DO PHYSICAL ACTIVITY. AND THEN IN ONE OF THE ONLY STUDIES THAT HAS MEASURED SLEEP IN ADOLESCENCE WITH TYPE I, THEY FOUND THEY EXCEPTED MORE BEHAVIOR PROBLEMS SUCH AS AGGRESSION AND THAT THEY HAD ACADEMIC DIFFICULTIES SO THEIR GRADES WERE LOWER. WHICH BRINGS US TO LIKELY COGNITIVE AFFECTS OF SLEEP ON DIABETES. SO AGAIN FROM THE GENERAL POPULATION, WE SEE THAT SLEEP DISRUPTIONS AND INSUFFICIENT SLEEP ARE RELATED TO REDUCED BLOOD FLOW IN THE PREFRONTAL CORTEX, THE AREA OF THE BRAIN RESPONSIBLE FOR EXECUTIVE FUNDS SKILLS WHICH WE HEARD ABOUT ORALLER SO IMPORTANT GOAL-DIRECTED BEHAVIOR NEEDED FOR SELF-MANAGEMENT. AND THERE IS SOME STUDIES WITH SLEEP DEPRIVATION WHERE PEOPLE ARE UP ALL NIGHT AND THEY HAVE BEEN ABLE TO SHOW THAT THAT HAS A BIG IMPACT ON COGNITIVE FLEXIBILITY AND SUSTAINED ATTENTION. AND THOSE ARE TWO OF THOSE EXECUTIVE FUNCTIONS SKILLS THAT ARE IMPORTANT FOR SELF-MANAGEMENT. SO WHY DO WE THINK WOULD BE IMPORTANT IN ADOLESCENCE WITH TYPE I DIABETES? WE KNOW THAT MOST PEOPLE AREN'T GETTING ENOUGH SLEEP. THIS THIS IS IN THE NEWS A LOT LATELY AND ESPECIALLY TEENS. SO NATIONAL DATA SHOWS THAT OVER 80% REPORT INSUFFICIENT SLEEP AND THAT IS GOING BY 9 HOURS PER NIGHT WHICH SEEMS LIKE A LOT BUT THAT IS WHAT THE NATIONAL SLEEP FOUNDATION RECOMMENDS FOR ADOLESCENCE. IT IS ACTUALLY 9 HOURS AND 15 MINUTES PER NIGHT. SO IF YOU HAVE A TEENAGER, YOU CAN TELL THEM THAT'S HOW MUCH THEY ARE SUPPOSED TO BE SLEEPING. BUT IT IS EASY TO SEE TEENAGERS AREN'T GETTING THAT AMOUNT OF SLEEP. SO THERE IS QUITE A FEW DEVELOPMENTAL CHANGE THAT IS HAPPEN DURING THE TEEN YEARS. SO, THERE IS PHYSIOLOGICAL CHANGES. A SHIFT IN CIRCADIAN RHYTHMS. SO THEIR BODY WANTS TO STAY UP LATER AND SLEEP IN LATER SO, WHAT I LIKE TO CALL THE VAMPIRE SCHEDULE WHERE THEY ARE UP ALL NIGHT AND SLEEP ALL DAY. THERE IS A BIOLOGICAL REASON FOR THAT. SO WHEN WE ASK THEM TO GET UP FOR SCHOOL AT 6 A.M., IT'S REALLY CHALLENGING. SO THAT BRINGS ME TO THE ENVIRONMENTAL CHANGES. UNFORTUNATELY, A LOT OF TIMES TEENAGERS ARE EXPECTED TO START SCHOOL EARLIER SO HIGH SCHOOL IS OFTEN HAVE THE EARLIEST START TIMES. IN MY SCHOOL DISTRICT IT'S 7:DEAN F YOU HAVE A TEENAGE GIRL THAT WANTS TO DO HER HAIR, THEY ARE GETTING UP PRETTY EARLY TO GET TO SCHOOL ON TIME. THIS IS PUBLIC HEALTH MOVEMENT TOWARDS SHIFTING SCHOOL TIMES LATER FOR OLDER KIDS, AND I THINK THEY SEEN A REALLY PROMISING RESULT FROM THAT BUT I THINK THE VAST MAJORITY OF HIGH SCHOOLS ARE STILL STARTING EARLIER THAN ELEMENTARY SCHOOLS, WHICH SHOULD PROBABLY BE FLIPPED. AND THEN THERE IS MORE DEMANDS ON TEENS AFTER SCHOOL. SO THEY HAVE MORE HOMEWORK, A LOT ARE INVOLVED IN SPORTS OR EXTRACURRICULARS THAT TAKE UP HOURS AND HOURS AFTER SCHOOL. MORE TEENAGERS ARE WORKING AFTER SCHOOL. SO THAT IS AFFECTING THEIR ABILITY TO GO TO BED EARLY. AND THEN THERE IS SOCIAL CHANGES. SO I'M SURE WE ARE ALL FAMILIAR WITH INCREASED TIME ON SOCIAL MEDIA. SO THAT INCLUDES THINGS LIKE TEXTING WITH THEIR FRIENDS, FACEBOOK, SNAPCHAT, EVEN GAMING HAS BECOME MORE SOCIAL. SO KIDS ARE PLAYING MIND CRAFT WITH THEIR COUSIN WHO LIVES IN ANOTHER STATE. THEY ARE TALKING TO THEM ON THEIR HEADSET OR WHATEVER. THAT'S HOW IMAGINE IT. SO THERE IS ALSO LESS OVERSIGHT BY PARENTS THAT THE AGE SO A LOT OF TIMES YOU'LL TALK TO FAMILIES AND WE HEAR PARENTS SAY THEY GO TO BED BEFORE THEIR TEEN. SO THEY DON'T REALLY KNOW WHAT THEY ARE DOING AT 2:00 A.M A LOT OF KIDS KEEP THEIR PHONES IN THEIR ROOM AT NIGHT SO EVERY TIME THEY GET A TEXT OR A POST OR A MESSAGE OR ANYTHING, THEIR PHONE IS BUZZING AND DISRUPTING THEIR SLEEP WAKING THEM UP AND THEN THEY CHECK THEIR TEXT AND THEN THEY ARE ALL UPSET ABOUT SOMEBODY WAS INVITED TO A PARTY AND THEY WEREN'T. SO THERE IS A LOT GOING ON FOR THEM. THEY CAN GET IN THE WAY OF GETTING SUFFICIENT SLEEP. SO THAT BRINGS US TO OUR HYPOTHESIZED ASSOCIATIONS HERE. SO THIS IS STAKING ALL THE DATA FROM DIFFERENT POPULATIONS AND TRYING TO PULL ITTH IT FOR ADOLESCENCE WITH TYPE I DIABETES. SO, WE EXPECT THAT THERE IS A BIDIRECTIONAL RELATIONSHIP HERE BETWEEN GLYCEMIC CONTROL AND SLEEP. SO KIDS WHO ARE IN POORER GLYCEMIC CONTROL MIGHT HAVE MORE DEEP DISRUPTIONS BECAUSE PHYSIOLOGICALLY THEY MIGHT BE DRINKING MORE WATER DURING THE DAY SO THEY HAVE TO GET UP AT NIGHT TO USE THE BATHROOM. THERE IS SOME STUDIES THAT SHOWS THAT THEY SPEND LESS TIME IN DIFFERENT STAGES OF REM THAN PEOPLE WITHOUT DIABETES. SO AT THE SAME TIME, THE EVIDENCE SUGGESTS THAT SLEEP CAN HAVE A POSITIVE AFFECT ON GLYCEMIC CONTROL DIRECTLY BUT ALSO INDIRECTLY THROUGH THE AFFECTS ON COGNITIVE FUNCTION AND THEN THE BEHAVIORAL SELF-MANAGEMENT. SO IT ALL LOOPS BACK AROUND. SO, WHAT WE'RE INTERESTED IN IS STUDYING THESE TWO SO WE CAN SEE IF WE CAN INTERVENE ON THOSE TO IMPROVE SELF MANAGEMENT AND GLYCEMIC CONTROL. SO, WE HAVE ONGOING STUDY THAT IS AIMED AT IMPROVING ADHERENCE AND ABLE TO INCLUDE A SLEEP MEASURE IN THIS SO I'M GOING SHARE A LITTLE BIT OF PRELIMINARY DATA. THIS STUDY WASN'T DESIGNED TO INTERVENE ON SLEEP BUT LOOKING AT THE BASELINE DATA. 120 ADOLESCENCE AGES 13-17 ABOUT HALF FEMALE PREDOMINANTLY WHITE BUT THAT IS TRUE FOR TYPE I DIABETES IN GENERAL. AND WE HAD A PRETTY WIDE RANGE IN INCOME CATEGORIES WITH A MEDIAN INCOME OF 35-65. IN TERMS OF CLINICAL CHARACTERISTICS, OUR GLYCEMIC CONTROL SELL 9.1% SO THAT IS WELL ABOVE THE TARGET OF 7 BE.5%. LOOKING AT BGM, AT THAT OBJECTIVE MEASURE OF SELF-MANAGEMENT, THEIR EXPECTED TO CHECK 4-5 TIMES A DAY. OUR MEAN WAS 3.3. SO THEY ARE NOT MEETING THE TARGETS AND THE STANDARD DEVIATION THEY ARE WIDE. SO THERE IS A LOT OF VARIATION AND ABOUT HALF ARE USING INSULIN PUMP AND HALF ADMINISTER WITH INJECTIONS. WE LOOKED AT OUR SELF REPORTED SLEEP IN THIS POPULATION AND THE MEAN WAS 7.6 HOURS A NIGHT SO WELL BELOW THAT TARGET OF 9 HOURS A NIGHT. SO HERE I HAVE A BIVARIATE CORRELATION TO THE MEAN. SO IN TERMS OF SLEEP DURATION, GREATER SLEEP DURATION WAS RELATED TO BETTER ADHERENCE. THE SELF CARE INVENTORY WHICH AS LESSENS COMPLETE AND THE SLEEP QUALITY THE WAY THIS MEASURE WORKS IS A LOWER SCORE IS BETTER. SO A HIGHER SCORE ON THIS QUALITY MEASURE MEANS THEY HAVE POORER SLEEP. SO, THE ASSOCIATION IS NOT EXPECTED DIRECTION HERE AS WELL AND THEN IN TERMS OF EXECUTIVE FUNCTION DEFICITS, AND THIS IS BASED ON APPARENT REPORT OF THEIR CHILD'S EXECUTIVE FUNCTION, HOW WELL THEY ARE ABLE TO COMPLETE TASKS, STAY ORGANIZED AND GET THINGS COMPLETED, WE FOUND SLEEP DISTURBANCE, THAT IS THINGS LIKE WAKING UP IN THE MIDDLE OF THE NIGHT, HAVING TROUBLE FALLING ASLEEP, WAS RELATED TO MORE EXECUTIVE FUNDED DEFICITS. SO OUR NEXT STEPS WITH HELP FROM THE OPPNET, WILL BE TO COLLECT OBJECTIVE MEASURES OF SLEEP IN ADOLESCENTS. SO WE WILL BE USING ACKATIVE GRAPHY DATA WHICH MEANS THEY WEAR THIS WATCH FOR 10 DAYS THAT MEASURES MOVEMENT, PROBABLY BETTER THAN A FIT BIT. AND SO IT WILL TELL US OBJECTIVE MEASURES OF SLEEP LATENCY OR HOW LONG IT TAKES THEM TO FALL ASLEEP. EFFICIENCIES, SO HOW MUCH MOVE ELEMENT IS DURING THE NIGHT AND TOTAL SLEEP TIME. UP UNTIL NOW WE HAD TO RELY ON ADOLESCENT SELF REPORT. SO WE ARE ASKING THEM TO COMPLETE SLEEP DIARIES AND THAT WILL TELL US A LITTLE BIT MORE ABOUT SOME OF THE THINGS THAT MIGHT INTERFERE WITH SLEEP LIKE CAFFEINE USE, AFTER SCHOOL ACTIVITY, SCHOOL START TIMES, MEDIA USE AT NIGHT. AND THEN WE'LL BE CONDUCTING COGNITIVE TESTING USING SOME OF THE NEUROCOGNITIVE TEST WE HEARD ABOUT TODAY. SO WE ARE REALLY FOCUSING ON THE EXECUTIVE FUNCTION TESTS. SO NIH TOOLBOX HAS TWO MEASURES THAT WE'LL BE USING SUBSCALES OF DIGIT PICTURE SPAN HOLDING NUMBERS IN MIND AND REPEAT THEM. AND TRAILS IS WHERE THEY ARE ASKED TO DRAW FROM A TO 1 FROM B TO 2 ASK SO THAT MEASURES ATTENTION AND PROCESSING SPEED AND WE'LL IT TO COLLECTED MULTIMETHOD MEASURES OF SELF-MANAGEMENT. SO THE PARENTS REPORT AND THE CHILD'S REPORT ON THEIR OWN AND THEN THE METER DOWNLOAD GIVES US OBJECTIVE NUMBER OF CHECKS PER DAY. OUR GOAL IS TO DETERMINE THE MODIFIABLE ASPECT OF SLEEP IN YOUTH WITH TYPE I DIABETES SO ULTIMATELY WE CAN INTERVENE TO IMPROVE THOSE. SO TO SUMMARIZED, SLEEP DISTURBANCES ARE PREVALENT IN THE GENERAL ADOLESCENT POP POLICE STATION IT APPEARS THAT THIS IS ALSO TRUE IN TEENS WITH TYPE I DIABETES. SLEEP MAY SERVE AS A BARRIER OR FACILITATOR TO SELF-MANAGEMENT IN DIABETES AND WE WOULD EXPECT OTHER CHRONIC HEALTH CONDITIONS. AND THEREFORE INCREASED UNDERSTANDING OF SLEEP AS A BASIC BEHAVIORAL MECHANISM IN RELATION TO SELF-MANAGEMENT HASSISM CAUSES FOR DIABETES AND OTHER PEDIATRIC POPULATIONS. SO I WANT TO ACKNOWLEDGE OUR SUPPORT FROM NIDDK AS WELL AS OPPNET SUPCOMMENT MY COLLABORATORS. BETH A NEUROLOGIST WITH EXPERTISE IN SLEEP MEDICINE AT VANDERBILT AND BRUCE IS CLINICAL CHILD PSYCHOLOGIST WITH EXPERTISE IN NEUROCOGNITIVE DEFICITS IN A VARIETY OF PEDIATRIC POPULATIONS AND THEN MY RESEARCH STAFF WITHOUT WHOM NONE OF THIS WOULD BE POSSIBLE. SO THANK YOU VERY MUCH AND I'M OPEN TO QUESTIONS. [ APPLAUSE ] >> QUESTIONS? >> -- COGNITIVE TESTING? >> FOR THIS WE ARE GOING TO TO IT AT ONE TIME POINT AND THEN IS SORT OF JUST TO GIVE US AN IDEA OF WHAT IS GOING ON IN A SNAPSHOT OF TIME. >> I'M INTERESTED IF YOU COULD EXPLAIN A LITTLE BIT MORE ABOUT YOUR MEASURES OF SELF-MANAGEMENT. YOU TALKED ABOUT PATIENT REPORT AND SELF REPORT FROM THE ADOLESCENTS. IS THAT RELATED TO WHETHER OR NOT THEIR INITIATING OR DOING THE STEPS THAT YOU SHOWED FOR MANAGEMENT? OR IS IT JUST RELATED TO CHECKING THEIR GLUCOSE LEVELS? SO ARE ALL OF THOSE STEPS WHAT THEY ARE SELF REPORTING ON? JUST A LITTLE BIT IN THE HOW YOU SCORE THAT. >> SO WE USE THE SELF CARE INVENTORY WHICH HAS BEEN VALIDATED IN THIS POPULATION, AND IT INCLUDES BOTH ADOLESCENT REPORT, SELF REPORT, AND A PARENT REPORT. BASICALLY ASKING THE SAIL QUESTION. AND SO, I BELIEVE IT IS 14 QUESTIONS SO TRIES TO CAPTURE ALL THE TASKS SO THINGS LIKE COUNTING CARBOHYDRATES, ADJUSTING INSULIN, GIVING LONG ACTING INSULIN. BLOOD GLUCOSE CHECKS. ADJUSTING ACTIVITY AND DIET, DEPENDING ON BLOOD GLUCOSE LEVELS AND THE IT'S SCORED A MEAN SCORE SO FOR EACH ITEM, THEY RATE FROM 1-5. I DO THIS NONE OF THE TIME, NOT VERY OFTEN, UP TO MOST OF THE TIME. AND SO, I THINK WE ACTUALLY HAVE FOUND THAT IT IS CORRELATED WITH FLY SEEMIC CONTROL FAIRLY WELL. EVEN THE CHILD REPORT WHICH YOU EXPECT THEY MIGHT HAVE SOME SOCIAL BIAS AND TRY TO REPORT THEY ARE DOING MORE THAN THEY ARE BUT I THINK HAVING A SCALE GIVE THEM THE OPPORTUNITY TO -- IT'S NOT JUST YES OR NO. IT'S LIKE WELL, HARDLY EVER, UP TO MOST OF THE TIME. I THINK THAT THEY ARE A LITTLE MORE TRUTHFUL BAUDS OF THAT SCALE. SO WE GET A MEANS SCORE AND OUR MEAN SCORE TENDS TO BE AROUND 3. SO I THINK THEY ARE BEING FAIRLY HONEST. >> SO THAT'S DISEASE SPECIFIC TO DIABETES? >> YES. >> HI. I'M WONDERING TWO THINGS. ONE, CAN YOU LEARN SOME OF THESE STEPS SO THAT YOU DON'T HAVE TO COUNT KARNS AND THINK ABOUT YOUR EXERCISE -- CARBS? SO YOU'RE ABLE TO MODULATED YOUR FOOD IN TAKE AND EXERCISE? AND IF THE ADOLESCENCE ARE NOT DOING IT VERY WELL, ARE THEY EXPERIENCING NEGATIVE CONSEQUENCES? CAN YOU SEE MEASUREMENTS OF POOR ADHERENCE OR POOR MANAGEMENT? >> SO, THE QUESTIONS ARE, CAN YOU LEARN THESE SKILLS SO YOU DON'T HAVE TO DO ALL THE STEPS AND THEN ARE THERE NEGATIVE CONSEQUENCES? ONE OF THE HARD THINGS ABOUT DIABETES IS THERE ARE SO MANY THINGS THAT PLAY INTO THAT BLOOD GLUCOSE LEVEL THAT I DON'T HAVE TYPE I SO I CAN'T SPEAK FROM EXPERIENCE. BUT FROM WORKING WITH THESE FAMILIES FOR SEVERAL YEARS, YOU COULD EAT THE SAME THING TWICE AND HAVE A DIFFERENT BLOOD SUGAR AFTERWARDS. SO THINGS LIKE STRESS CAN MAKE YOUR BLOOD SUGAR GO HIGH. WE'LL HEAR FROM KIDS THAT THEY FIGURED OUT HOW MUCHINS LAIN THEY NEED TO GET THROUGH BASKETBALL PRAY BUT IF IT'S A GAME, NOW YOU GOT ADRENALINE AND IT CHANGES EVERYTHING. SO SOMETIMES THEY PURPOSELY RUN HIGH BEFORE A GAME BECAUSE THEY KNOW THEY WILL DROP LOW WHEN THE ADRENALINE WEARS OFF. SO THERE IS IT A CONSTANT ADJUSTMENT AND SO THE WAY THAT TYPE I DIABETES USED TO BE MANAGED WAS MUCH MORE REGIMENTED WHERE PEOPLE ARE ON A MEAL PLAN AND THEY WOULD ALWAYS GIVE THE SAME AMOUNT OF INSULIN BECAUSE THEY WOULD ALWAYS EAT THE SAME AMOUNT OF CARBS AT EACH MEAL. SO THE MANAGEMENT HAS SHIFTED TO MAKE IT MORE FLEXIBLE BUT BECAUSE OF THAT, I THINK THERE IS A MASS THAT HAS TO HAPPEN ALL THE TIME. SO SOME FAMILIES WHERE KIDS ARE STRUGGLING, THEY WILL TRY TO GET THE KIDS ON TWO SHOTS A DAY SO YOU'RE COVERING SOME THINGS AND TAKING AWAY SOME INTENSIVE MANAGEMENT BUT UNFORTUNATELY, THERE IS NOT LIKE A MAGIC FORMULA THAT YOU CAN LEARN IN JUST SHORT OF STICK WITH IT. A LOT OF KIDS WILLINED UP EATING THE SAME THINGS ESPECIALLY LIKE BREAKFAST LIKE THEY ALWAYS HAVE A GO NOLE'S BAR AND A YOGURT BECAUSE THEY DON'T HAVE TO DO THE MATH. THEY KNOW THAT IS 20 CARBS OR WHATEVER IT IS. AND THEN KIDS TRY TO CHEAT IT. SO THERE IS THE MAGIC I'LL PUT 6TH I NO MATTER WHAT I EAT. I TALKED TO THIS GIANT FOOTBALL PLAYER WHO WAS SAYING HE DIDN'T USUALLY GET INSULIN FOR HIS SNACK AFTER SCHOOL AND I'M LIKE WHAT IS YOUR SNACK? HE SAYS EASTERLY TWO SANDWICHES. I'M LIKE, WELL, THAT'S PROBABLY QUITE A FEW CARBS. SO, I THINK IT'S CHALLENGING AND -- >> [ OFF MIC ] >> I DON'T THINK THIS GUY WAS MAKING A LETTUCE WRAP. SO, UNFORTUNATELY, THERE IS NOT JUST SORT OF A ROGUE MEMORIZATION THEY CAN USE BECAUSE YOU THERE ARE CONSTANT ADJUSTMENTS AND HORMONES PLAY A ROLE AND GROWTH. SO ESPECIALLY DURING ADOLESCENCE IT'S REALLY TRICKY. IN TERMS OF NEGATIVE CONSEQUENCES, PHYSIOLOGICALLY, THEY WILL FEEL BAD BECAUSE THE FLOOD SUGAR IS HIGH. SO, THEY'LL EXPERIENCE PROBLEMS WITH CONCENTRATION, SOMETIMES VISION ISSUES, SOMETIMES FEELING DIZZY, BUT IT HAS TO BE PRETTY HIGH FOR THAT TO HAPPEN AND SO, A LOT OF TIMES, PEOPLE WILL BE RUNNING IN THE 200 TO 300 RANGE WHICH IS STILL UNHEALTHY LONG TERM BUT THEY DON'T HAVE ANY SORT OF IMMEDIATE CONSEQUENCES. DOES THAT MAKE SENSE? >> ONE LAST QUICK QUESTION. >> IN TERMS OF YOUR INTERVENTION, DO YOU SEE ALONG THE ROAD INCORPORATING TECHNOLOGY, PARTICULARLY WITH TEENAGERS WHO SEEM TO USE THE TECHNOLOGY MORE FREQUENTLY AND GET MORE ENGAGED IN TERMS OF IDENTIFYING THEIR CARBS AND ET CETERA? AND MAYBE PROGRAMMING WITH AN ENGINEER OR ANOTHER PROFESSIONAL? >> SO, THE QUESTION WAS ABOUT INCORPORATING TECHNOLOGY AND INTERVENTION. SO THERE HAS BEEN ATTEMPTS TO DO THAT. THERE IS SEVERAL TEXT MESSAGING INTERVENTIONS WITH REMINDERS AND WHAT WE SEE IS LIKE AN INCREASE IN SELF-MANAGEMENT AND THEN IT DROPS OFF AND SO THE IDEA IT HAS TO BE MORE THAN JUST REMINDERS, THERE HAS TO BE ENGAGEMENT. THIS IS WORK AROUND DEVELOPING NEW APPS AND THINGS LIKE THAT. THE ISSUE IS, THE KIDS WHO ARE ALREADY DOING A PRETTY GOOD JOB ARE THE ONES WHO LIKE USING THOSE APPS AND SO IT IS REALLY HARD TO ENGAGE THE KIDS WHO DON'T WANT TO EVEN THINK ABOUT DIABETES WHO ARE EXPERIENCING DIABETES. THEY ARE TRYING TO FIGURE OUT WAYS TO DO THAT. SO OUR CURRENT INTERVENTION USES TEXT MESSAGES TO SEND POSITIVE MESSAGES TO ENGAGE THE IN THAT WAY. >> THANK YOU VERY MUCH. [ APPLAUSE ] >> GOOD MORNING, EVERYBODY. I THINK IT IS VERY APPROPRIATE FOR ME TO FOLLOW THAT TALK SINCE I'M TALKING ABOUT YOUTH AND SELF-MANAGEMENT AND ALSO SLEEP DEPRIVED THANKS TO COMING FROM L.A. AND HAVING DELAYED AIRPLANE RIDES COMING OVER. SO I'M TALKING ABOUT VIRTUAL SOCIAL SUPPORT FOR YOUTH AROUND TREATMENT ADHERENCE TO HIV MEDICATIONS AND I'LL TALK A LITTLE BIT ABOUT MY STUDY. I HAVE NO CONFLICTS TO PRESENT AND THANKS TO THE ATN AND NIH FOR FUNDING SOME OF MY RESEARCH. I SHOULD SAY I'M A PHYSICIAN IN YOUNG ADULT MEDICINE. I DIDN'T START OFF AS A RESEARCHER AND MAYBE THAT WILL BE A LITTLE BIT OF WHY I CHOSE PRAGMATIC RESEARCH. ANYWAY, THE ISSUE AROUND ADD LES EXPENSE IS YOUNG ADULTS WITH HIV HAVE TO DO WITH THIS SLIDE AND IF I COULD WALK YOU THROUGH IT HERE, ESTIMATED 79,000 ADOLESCENCE AND YOUNG ADULTS UP TO 29 LIVING WITH HIV. OF THOSE LIVING WITH HIV, ONLY 40% HAVE BEEN DIAGNOSED, SMALL SUB SET OF THAT IS LINKED TO CARE, AND THEN THOSE ONLY RETAINED IN CARE ONLY ABOUT HALF ARE ACTUALLY SUPPRESSED VIRAL LOAD. SO SUPPRESSED VIRAL LOAD IS VERY IMPORTANT BECAUSE IF YOU THINK ABOUT YOU WANT PEOPLE TO BE HEALTHY, YOU ALSO DON'T WANT THEM TO TRANSMIT HIV. AND THESE ARE THE PEOPLE THAT ARE TRANSMITTING HIV. IF YOU COULD GET ALL OF THESE PEOPLE HERE TO BE OVER HERE, WE WOULD NO LONGER HAVE AN EPIDEMIC. SO, IT BECOMES VERY IMPORTANT. WHY DO YOUTH LIVING WITH HIV HAVE SUCH A HARD TIME MANAGING THEIR CONDITION? THERE WAS A NICE STUDY FUNDED BY ATN CALLED 086/106 THAT STUDIED YOUTH AT 20 SITES ACROSS THE COUNTRY AND VIRTUALLY EVERYONE AT THESE SITES WERE ENGAGED. IT GIVES YOU A PRETTY GOOD SNAPSHOT OF WHAT YOUTH WITH HIV LOOK LIKE. THE MEAN AGE WAS 21. 76% WERE MALE TWO-THIRDS WERE AFRICAN-AMERICAN, 20% LATINO. THREE-QUARTERS WERE GAY BY SEXUAL TRANSGENDER QUESTIONING. AND 60% WERE DIAGNOSED IN THE LAST TWO YEARS. SO NEW TO CARE AND NEWLY INFECTED. IN TERMS OF RISK CHARACTERISTICS, YOU CAN SEE THAT GOOD PERCENTAGE WERE HIGH SCHOOL DROP OUTS AND VERY FEW EMPLOYED, TABLEY HOUSED AT THAT TIME -- STABLY HOUSED -- A HIGH HISTORY OF HOMELESSNESS, 27% OF YOUTH LINKED TO CARE WERE VIRALLY SUPPRESSED. 63% SCORED A TWO OR GREATER ON THE CRAFT WHICH INDICATED SUBSTANCE MISUSE OR ABUSE. 52% HAD SCORES ON THE BDI CONSISTENT WITH CLINICAL DEPRESSION AND AGAIN 75% OF THESE YOUTH WHO WERE NOT ON MEDICATION WERE NOT VIRALLY SUPPRESSED AND REPORTED UNPROTECTED SEX. AGAIN, INDICATING WHY WE ARE GOING TO HAVE A HARD TIME CONTROLLING THIS EPIDEMIC. THERE IS A LOT OF RESEARCH ON PREDICTORS OF NONADHERENCE IN ADOLESCENCE AND YOUNG ADULTS AND DEPRESSION IS THE ONE THAT IS KIND OF CHRONICALLY UP THERE IN ALMOST EVERY STUDY LOOKED BUT THERE ARE OTHER PREDICTORS INCLUDING LOW SELF-EFFICACY, POOR COPING STYLES, POOR SOCIAL SUPPORT, POOR MOTIVATIONAL READINESS, HOUSING INSTABILITY, AND SUBSTANCE ABUSE AND SOME SUGGESTIONS IN THE LITERATURE THAT STIGMA AND DISCLOSURE ARE ISSUES AROUND ADHERENCE. ALTHOUGH THAT HAS BEEN LESS STUDIED. IF YOU ASK YOUTH WHY THEY ARE NOT ADHERENT, THEY GIVE OFF A LITTLE BIT DIFFERENT ANSWER. THEY USUALLY SAY I FORGOT. I DON'T FEEL LIKE TAKING MY MEDICATIONS OR TAKING MY MEDICATIONS REME I HAVE HIV. I MEAN, THE ISSUE AROUND THIS IS REALLY THAT YOUTH DON'T SEE TAKING MEDICATIONS FOR AN ILLNESS THAT GENERALLY HAS NO SYMPTOMS AS A VERY HIGH PRIORITY IN THEIR LIFE AND THEIR MULTIPLE OTHER THINGS THAT ARE OF A HIGHER PRIORITY IN ADOLESCENCE AND YOUNG ADULTS THAN MANAGING AN ASYMPTOMATIC DISEASE. SO, VERY QUICKLY WE'LL SUMMARIZE THE INTERVENTIONAL ADHERENCE RESEARCH TO DATE. THERE HAVE BEEN A NUMBER OF STUDIES, ONE USING ALL OF THESE ARE GENERALLY SMALL PILOTS. ONE USED DIRECTLY OBSERVED THERAPY WHERE AN ADHERENCE COUNSELOR WENT OUT AND GAVE THE MEDICATION TO YOUTH EVERY DAY. THERE WAS ANOTHER ONE USING MOTIVATIONAL INTERVIEWING BY DR. NAAR KING I WORK WITH. A STUDY LOOKING AT MULTISYSTEMIC THERAPY IN FAIRLY YOUNG PARITY NATALY INFECTEDDEDDA LESSENS AND THERE IS A STUDY WE DID INITIALLY THAT USED PHONE CALORIE MINDERS AND LASTLY A COUPLE STUDIES BY DR. DO YOU SHEN AND GAROFALO LOOKING AT TEXT MESSAGING. ALL OF THESE STUDIES SHOWED MODEST IMPROVEMENTS NO STICKING POWER TO THESE INTERVENTIONS. SO BEING A PHYSICIAN AND TRYING TO COME UP WITH SOMETHING PRAGMATIC, I DESIGNED WHAT IS CALLED ATN078, CELL PHONE SUPPORT FOR YOUTH NONADHERENT FOR ANTI-RETROVIRALS. AND THE METHODS AROUND THE STUDY, A LONGITUDINAL EXPERIMENTAL DESIGN RANDOMIZED 37 SUBJECTS 15-24 TO 24 WEEKS OF CELL PHONE SUPPORT. YOUTH WERE RECRUITED FROM 5ATN U.S. DISPEACE WE USED PRIMARY ADHERENCE FACILITATORS TO MAKE THESE CALLS AND TALK TO THESE YOUNG PEOPLE VERY BRIEFLY EVERY DAY. WE PURPOSEFULLY HAD THEM BE BA-LEVEL CASE MANAGERS, RESEARCH ASSISTANCE AND NOT LICENSED CLINICAL PERSONNEL, BECAUSE WE WERE WORRIED ABOUT WHO WOULD ACTUALLY IMPLEMENT THIS IN THE REAL WORLD IF IT WORKED. SO AGAIN, INCLUSION CRITERIA, YOU CAN SEE LISTED. THEY HAD TO HAVE A HISTORY OF NONADHERENCE TO ONE OR MORE COMPONENTS OF THEIR AREN'T RETROVIRAL THERAPY. HAD TO BE CURRENTLY PRESCRIBED ANTI-RETROVIRAL THERAPY AND REPORT LESS THAN 90% ADHERENCE AND A VIRAL LOAD GREATER THAN 1000, WHICH WAS 14 YOUTH. THE MOST COMMON GROUP OF OUR PATIENTS WERE ONES THAT HAD ACTUALLY STOPPED TAKING MEDICATIONS WHICH WE SEE ALL THE TIME AND ONE YOUTH WHO HAD AGREED TO INITIATE ANTIRETROVIRAL BUT NEVER INITIATED TREATMENT. THEY HAD TO SPEAK ENGLISH AND PROVIDE INFORMED CONSENT. THE PROCEDURES HERE ARE THAT EULOGY HAD A CHOICE. THIS STUDY TOOK PLACE ABOUT FIVE YEARS AGO AT THIS TIME YOUTH DIDN'T UBIQUITOUSLY HAVE THEIR OWN CELL PHONES, SO WE GAVE THEM THEIR CHOICE OF USING THEIR OWN PHONE AND THEN PROVIDING INCENTIVE OF 45 MONTHS TO PAY FOR THEIR SERVICE, OR TO RECEIVE A PHONE AND A CELL PHONE PLAN AND AGAIN REFLECTED THE TYPE OF PLAN REFLECTED WHAT WAS AVAILABLE FIVE YEARS AGO. WHAT YOUTH HAD TO DO TO GET THEIR INCENTIVE WAS TO ANSWER 80% OF THE PHONE CALLS F THEY MISSED 20% OF THE CALLS TWO CONSECUTIVE MONTHS, WHEEL TOOK THEIR PHONE AWAY AND WE DROPPED THEM FROM THE INTERVENTION. THE REASON BEHIND THIS IS WE REALLY, REALLY WANTED YOUTH TO GET THE INTERVENTION TO SEE IF IT WOULD WORK. AGAIN, IF YOUTH USING THEIR OWN PHONE WERE LESS THAN 80% ADHERENCE, WE GAVE THEM A PHONE AND SERVICE TO MAKE SURE THEY WOULD HAVE CONTACT. THE CALLS WERE MADE ON MONDAY-FRIDAY. THEY EITHER RECEIVED ONE OR TWO CALLS A DAY REFLECTING THE NUMBER OF TIMES THEY WERE TAKING MEDICATIONS. MOST JUST ON ONCE A DAY MEDICATION. THE GOAL WAS TO CALL THEM ABOUT AN HOUR AFTER THE TIME THEY WERE SUPPOSED TO TAKE THEIR MEDICINE SO WE WERE GIVING THEM THE CHANCE TO TIKE THEIR MEDICINE INITIALLY. CALLS AVERAGED 3-5 MINUTES. THEY WERE VERY BRIEF. AND WHAT THE INTERVENTION WAS, IT CONFIRMED YOUTH HAD TAKEN THEIR MEDICATION F THEY HASN'T, WE WAITED FOR THEM TAKE IT F THEY HAD IT AVAILABLE THERE WITH THEM. WE DISCUSSED NEW OR ONGOING LIFE PROBLEMS OR BRIEF PROBLEM-SOLVING. WE REENFORCED PRIORITIZING MEDICATIONS. WE SCHEDULED REFERRALS AS THEY NEEDED FOR PHYSICIANS OR PSYCHOLOGISTS OR CASE MANAGERS. WE GAVE THEM THEIR APPOINTMENT REMINDERSED AND WE ASSESSED SERVICE UTILIZATION ON THE CALL AS WELL. THE PRIMARY OBJECTIVES WERE TO LOOK AT THERAPEUTIC SUCCESS AT THE END OF THE 24 WEEKEND VENTION AND 24 WEEKS AFTER THE INTERVENTION. AS MEASURED BY SELF REPORT AND VIRAL LOAD. WE ALSO DID SOME QUALITATIVE WORK WITH HOW THE YOUTH FELT AND HOW THE ADHERENCE FACILITATORS WHO ADMINISTERED IT AND I'LL TALK ABOUT BOTH. AT THE TIME THIS THEORY OF EHEALTH INTERVENTIONS WAS AVAILABLE, IT CAME ABOUT SO I THOUGHT IT WAS REALLY WORTH TALKING ABOUT, WHICH IS THE THEORY OF SUPPORTIVE ACCOUNTABILITY. THIS THEORY WAS DEVELOPED AGAIN TO SPECIFICALLY GUIDE eHEALTH INTERVENTIONS AND BASED ON THE PREMISE THAT HUMAN SUPPORT INCREASED ADHERENCE TO ACCOUNTABILITY TO A COACH IN OUR STUDY THAT WAS ADHERES FACILITATOR. THAT THIS COACH IS PERCEIVED ADDS TRUSTWORTHY AND KNOWABLE AND BEN ELF EVENT AND SPECULATION IN THIS THEORY THAT LESS FACE TO DAYS AND MORE INDIRECT COMMUNICATION ACTUALLY IS ATTRIBUTED WITH MORE POSITIVE IDEALIDES ATTRIBUTES OF THE COACH. SO THERE IS BENEFITS TO NOT BEING IN PERSON. SO WE DID AN INTERVIEW THAT MEASURED A WHOLE HOST OF DIFFERENT MEASURES. YOU CAN SEE LISTED BELOW INCLUDING ADHERENCE MEASURED BY VISUAL ANALOGUE SCALE AND -- [ READING ] HERE YOU CAN SEE THE DATA AND I'LL TAKE YOU THROUGH THIS VERY QUICKLY JUST AS TWO-THIRDS WERE MALE. A THIRD FEMALE. TWO-THIRDS AFRICAN-AMERICAN. 20% LATINO. AND ABOUT HALF AND HALF BEHAVIORAL AND PERRY FATALITY INFECTED YOUTH. AT THE END OF THE INTERVENTION AT 24 WEEKS ADHERENCE WENT UP AND 48 WEEKS IT STAYED UP AND IT WAS STATISTICALLY SIGNIFICANT REGARDLESS OF WHETHER YOU ASKED THEM IN THE LAST THREE MONTHS, LAST MONTH, LAST WEEK, OR THE LAST WEEKEND. OF NOTE, ADHERENCE IN THE CONTROLLED GROUP WAS EVEN UPON WORSE THAN IT WAS AT BASELINE AT THE END OF 48 WEEKS. THESE KIDS WERE ALL IN CARE IN ADOLESCENT YOUNG ADULTS WITH PSYCHOLOGISTS DOCTORS AND STUFF LIKE THAT. YOU CAN SEE THAT GREATER THAN 90% REPORTED ADHERENCE WHICH AT THE TIME WAS THE GOLD STANDARD AND ALSO STATISTICALLY SIGNIFICANT REGARDLESS OF HOW WE LIKED. OF COURSE SELF REPORT DOESN'T ALWAYS REFLECT WHAT IS REALLY GOING ON IN THE REAL WORLD SO FORTUNATELY, HIV WE HAVE A BIOLOGICAL MEASUREMENT MEANING VIRAL LOAD AND YOU CAN SEE AGAIN THAT OVER THE 48 WEEKS VIRAL LOAD WAS SIGNIFICANTLY REDUCED. OF NOTE, IF YOU LOOK AT WHAT WE WANT TO GET, WHICH IS UNDETECTABLE VIRAL LOAD OR CLOSE TO UNDETECTABLE, A LITTLE OVER HALF OF THE YOUTH IN THE INTERVENTION REACHED THAT AT 24 WEEKS. IT DROPPED A LITTLE BIT AT 48 WEEKS. SO, CERTAINLY THIS DIDN'T WORK FOR EVERYBODY BUT IT WORKED FOR A GOOD CHUNK OF THE YOUTH. WE ALSO LOOKED AT FEASIBILITY AND ACCEPTABILITIY. ONLY 12 OF THE 19 SUBJECTS COMPLETED THE INTERVENTION BUT IF WE WOULD HAVE REDUCED THAT REQUIREMENT FROM 80% TO 75%, 5 ADDITIONAL YOUTH WOULD NOT HAVE BEEN DROPPED SO IT WILL HELP US WITH THE NEXT ROUND OF STUDIES. MOST YOUTH APPROACHED PARTICIPATED. 84% OF ALL CALLS WERE COMPLETED. REASONS FOR MISSING MEDICATIONS PRIOR TO THE CALL WERE FORGETTING 23%. CHANGE IN SCHEDULE OR ROUTINE 16%. WHAT I PRESENTED FROM OTHER RESEARCH. AND IN TERMS OF THE CALL CONTENT, PROBLEM-SOLVING ADVICE WAS GIVEN AND ONLY 6.7% OF THE CALLS. SO MOST OF THE CALLS WERE QUICK. YES I HAVE STEAK EN MY MEDICATION AND EVERYTHING IS OKAY. AND IT WENTS FINE BUT SOMETIMES WE HAD TO HELP THEM WITH INFORMATION ABOUT REMINDERS AND QUEUES AND SCHEDULING AND MANAGING SIDE EFFECTS AND 5% OF THE CALLS HAD A REFERRAL FOR ONE OF THEIR SERVICE PROVIDERS. IN THE EXIT INTERVIEWS, 94% OF THE YOUTH REPORTED THAT TALKING TO THEIR ADHERENCE FACILITATOR WAS EASY. 88% REPORTED GETTING CALLS MADE TAKING THEIR MEDICATION EASIER. 69% REPORTED MORE MOTIVATION. 95% REPORTED THE CALL LENGTH WAS JUST RIGHT. 81% WOULD HAVE LIKED TO CONTINUAL WITH THE CALLS. EACH AT THE END OF 24 WEEKS. I THOUGHT THIS WAS REALLY TELLING. 63% OF THE YOUTH WOULD HAVE WANTED CALLS ON WEEKENDS. I WOULD HAVE THOUGHT THAT WOULD HAVE BEEN VERY LOW. 56% WOULD HAVE LIKED TO TAPER THE CALL FREQUENCY AT THE END AND NOT HAVE BEEN JUST ABRUPTLY ENDED AND 100% WOULD RECOMMEND TO THIS TO THEIR FRIENDS. WHAT ABOUT THE OTHER IMPACTS OF THIS INTERVENTION? WE WERE KIND OF HAPPY AND SURPRISED AT SOME LEVEL TO FIND SIGNIFICANT REDUCTIONS OF SUBSTANCE USE AT 24 AND 48 WEEKS. SO IT WASN'T REALLY ADDRESSED ON THE CALL ITS. SO IT WAS A LITTLE BIT SURPRISING. WE DID FIND SIGNIFICANT REDUCTIONS IN DEPRESSION AT 24 WEEKS BUT NOT AT 48. WE HAD SIGNIFICANT REDUCTION IN PERCEIVED STRESS AT 44 AND 48 WEEKS. THERE WAS A TREND TOWARDS IMPROVED MOTIVATIONAL READINESS AT 24 AND 48 WEEKS. AND WE HAD HYPOTHESIZED THE REASON THIS INTERVENTION WAS GOING TO WORK IS BECAUSE WE WERE GOING TO GET THESE YOUTH TO UTILIZE MORE SERVICES. THEY WERE GOING TO GO TO THE DOCTOR MORE. THEY WERE GOING TO DETECT THEIR DEPRESSION. GO TO THE PSYCHOLOGIST. GO TO THEIR SUBSTANCE ABUSE COUNSELOR. BUT ACTUALLY, WE FOUND THE OPPOSITE THAT THERE WAS NO INCREASE IN SERVICES UTILIZATION TO POWER THIS CHANGE IN SUBSTANCE ABUSE AND DEPRESSION. SO IN CONCLUSION, YOUTH AND ADHERENCE FACILITATORS SAID THAT THE INTERVENTION WAS ACCEPTABLE AND FEASIBLE. YOUTH IN THE INTERVENTION GROUP REPORTED IMPROVED ADHERES AND THAT WAS CONFIRMED BY IMPROVED VIRAL LOAD. WE WERE SURPRISED TO SEE THE IMPROVEMENTS IN DEPRESSION AND SUBSTANCE ABUSE WITHOUT INCREASING SERVICE UTILIZATION AND THIS IS THE FIRST CONTROLLED STUDY IN NONADHERENCE ADD LES EXPENSE IS YOUNG ADULTS TO NOT JUST SHOW IMPROVEMENT DURING THE INTERVENTION BUT TO HAVE SOME STAYING POWER A FULL 24 WEEKS AFTER THE INTERVENTION. SO WHAT ARE THE FUTURE QUESTIONS? WHAT DOES THIS MAKE US THINK ABOUT? WOULD YOUTH ANSWER OR EXCUSE ME ENGAGE IN THE INTERVENTION IF THERE WASN'T INCENTIVE? SO WE USED THE INCENTIVE NOT TO GET THEM TO TAKE THEIR MEDICATIONS BUT TO ANSWER THE CALLS AND WE DON'T KNOW IF THEY WOULD ACTUALLY ANSWER CALLS. MY EXPERIENCE WITH YOUTH IS THAT THEY WON'T. OTHER QUESTIONS INCLUDE COULD WE FOR SOME YOUTH MAKE THIS MORE EASILY ADMINISTERED INTERVENTION BY USING DAILY TEXT MESSAGES ALONE? WOULD TELL HELP TO HAVE PROFESSIONALS DO THE INTERVENTION AND ANSWER THESE CALLS ESPECIALLY MAYBE IF THEY WERE TRADE IN MOTIVATIONAL INTERVIEWING? OTHER QUESTIONS INCLUDE, WHO LEARNED TO SELF MANAGE IN THAT 24 WEEKS AND WHO NEEDS ONGOING INTERVENTION? ANDING THIS INTERVENTION BE UTILIZED TO IMPROVE ENGAGEMENT AND RETENTION OF CARE, WHICH I SHOWED YOU ON THAT INITIAL CASCADE AS ALSO A HUGE ISSUE. SO, IT KIND OF MAKES ME THINK ABOUT SOME KEY QUESTIONS HERE WHICH IS, WHO ARE THESE NONADHERENT YOUTH? AND I THINK OUR RESEARCH AND EXPERIENCE SAYS THESE ARE YOUTH WHO HAVE VERY POOR SOCIAL SUPPORT. THEY HAVE SUBSTANCE MISUSE AND ABUSE. THEY HAVE SIGNIFICANT MENTAL HEALTH ISSUES. THEY HAVE ASYMPTOMATIC SNAKE TIEING CONDITION. THEY MAY NEED AN INVENTIVE TO INITIALLY ENGAGE WITH ANY INTERVENTION. STUDY ADHERENCE FACILITATOR MAY BE THE ONLY RELIABLE PERSON THESE YOUNG PEOPLE LIVES. WE DIDN'T ASK THIS BUT AT THE END OF THE STUDY, THIS WAS MY BIG THOUGHT. DO THESE PEOPLE REALLY HAVE ANYBODY IN THEIR LIFE WHO IS GOING TO ACTUALLY TALK TO THEM PRETTY MUCH EVERY SINGLE DAY AND BE SUPPORTIVE? CAN THIS SUPPORT EVENTUALLY MEET THE SELF-MANAGEMENT AND CAN TEXT MESSAGES OR APPING PROVIDE THE SAME LEVEL OF SUPPORT? I'M INVOLVED WITH TWO OTHER STUDIES RIGHT NOW, ONE IS USING A WEB-BASED INTERVENTION THAT USEDDED MOTIVATIONAL INTERVIEWING PRINCIPLES HELP USE MOVE TO CARE, ENGAGE AND START MEDICATION AND ANOTHER INTERVENTION STUDY THAT IS JUST STARTING RIGHT NOW THAT IS USING AN APP FOR YOUNG MEN WHO HAVE SEX WITH MEN AND GETS THEM INTO CHATROOM-LIKE INTERVENTIONS TO TRY TO PROVIDE SOCIAL SUPPORT AND SEE WHETHER THAT CAN HELP THEM WITH THE SOCIAL SUPPORT AND NOT HAVE TO HAVE THAT REQUIRED PURPOSE TO PERSON INTERVENTION. SO A LOT OF PEOPLE TO THANK. OUR COMMUNITY ADVISORY BOARD. THE SUBJECTS, NIH, AND I LEFT A BIOGRAPHY AT THE END FOR PEOPLE. THANK YOU. [ APPLAUSE ] >> [ OFF MIC ] >> SO IN THE ORIGINAL PILOT, NOT THIS PILOT STUDY, WE HAD JUST DONE REMINDERS AND FOUND ALL THE OTHER STUDIES THAT IF YOU JUST PROVIDED REMINDERS, SAY TAKE THEIR MEDICINE AND AS SOON AS YOU STOPPED THE INTERVENTION, THEY GO BACK TO WHERE THEY WERE BEFORE. SO WE TRIED TO BE ABLE TO SAY, COULD WE PROVIDE SOME LEVEL OF SUPPORT? SO IF YOU THINK ABOUT ADD LESSENTS AND YOUNG ADULT AND HIV WITH ALL THE PROBLEMS, THEY FREQUENTLY HAVE PROBLEMS IN THEIR LIFE. WHAT I HAVE FOUND ADDS A CLINICIAN IS THAT THEY DON'T TELL WHEN YOU THEY HAVE PROBLEMS AND THEY TELL WHEN YOU THEY COME BACK TWO MONTHS LATER, 6 MONTHS LATER, HAVING STOPPED THEIR MEDICATION. SO WE WANTED TO FIND OUT WHAT THE PROBLEMS WERE IN REALTIME. AND THE TYPES OF PROBLEMS THAT THEY HAD SOMETIMES IT WAS JUST LIKE MEDICINE FATIGUE AND NOT WANTING TO TAKE THEIR MEDICATION AND YOU MIGHT BE ABLE TO HELP THAT BY GIVING THEM MOTIVATION THROUGH THE SUPPORT OF ACCOUNTABILITY THEORY OR EVEN JUST THROUGH TRYING TO HELP THEM WITH DOSING QUEUES WHERE YOU PUT YOUR MEDICINE AND HOW DO YOU DO YOU REMEMBER TO TAKE THEM? SOMETIMES IT WAS INSURANCE ISSUES AND SO MANY YOUNG PEOPLE LOSE THEIR INSURANCE OR RUN OUT OF REFILLS AND YOU HAVE TO HELP GUIDE THEM THROUGH THE REALLY PRAGMATIC ISSUES. SOME KIDS HAD DEFLECTION AND RELAPSE WITH SUBSTANCES OR HOMELESS AND THEY NEEDED REFERRALS TO THEIR HEALTH CARE TEAM AND WHAT THIS INTERVENTION REALLY ALLOWED US TO DO IS GET THEM THAT HELP IN REALTIME. NOT PROVIDED ON THE CALL. THE CALL WAS REALLY SUPPOSED TO BE VERY BRIEF. BUT DETECT PROBLEMS BECAUSE ALL THESE YOUTH HAVE A HEALTH CARE TEAM TO HELP THEM IF THEY HAVE MORE PROBLEMS. >> SO I WAS WONDERING WHETHER OR NOT YOU THINK THAT THE ONGOING SOCIAL SUPPORT IS -- I RECENTLY STARTED USING AN APP THAT HELPED MY ADHERENCE WHERE -- SORRY, I HAVE AN ONGOING THING IT'S NOT HIV BUT IT'S SOMETHING ELSE. AND IT SENDS A TEXT MESSAGE TO A FRIEND IF I DON'T TAKE MY MEDICATION HALF HOUR AFTER I WAS SUPPOSED TO. AND YES, IT'S REALLY HELPED. SO I WAS WONDERING WHETHER OR NOT THAT SORT OF -- BECAUSE IN THAT SENSE, IT ENGAGES SOCIAL SUPPORT ONLY WHEN I'M NOT TAKING MY MEDICATION AND I WAS WONDERING WHETHER OR NOT THAT KIND OF STRATEGY YOU THINK WOULD BE HELPFUL OR IS IT REALLY LIKE THE ONGOING SUPPORT EVEN WHEN THE MEDICATION ADHERENCE IS GOING WELL? >> I GUESS THE QUESTION IS, DO THESE YOUTH NUMBER 1 HAVE SOMEBODY IN THEIR LIFE THAT COULD PROVIDE THAT LEVEL OF SOCIAL SUPPORT? MANY OF THEM DON'T HAVE RELIABLE PEOPLE. BUT IT COULD BE A SERVICE PROVIDER WHO PROVIDED THAT ADDS NEEDED. THEN YOU NEED THE TECHNOLOGY -- HOW DO YOU KNOW THEY DIDN'T TAKE THEIR MEDICATION? SO THERE ARE MEMES CAPS AND DIFFERENT TYPES OF PILL BOXES THAT CAN SEND ELECTRONIC MESSAGES OUT WHEN YOU DON'T TAKE YOUR MEDICINE. BUT THEY ARE KIND OF BIG AND BULKY AND NOT THE KIND OF THING THAT YOU LIKE SO MUCH. SO I THINK THAT FOR SOME YOUTH THAT WOULD BE VERY PRACTICAL AND I THINK AS WE ARE DEVELOPING INTERVENTIONS IN HIV, THE WHOLE IDEA IS, HOW DO YOU FIND THE EASY ONES? EASY INTERVENTIONS TO IMPLEMENT THAT ARE INEXPENSIVE AND FOR THAT FIRST TIER OF YOUTH THAT WERE HAVING A LITTLE BIT OF A PROBLEM AND THEN WHAT DO YOU DO WITH THAT BIG CHUNK OF LIKE 50% OF YOUTH WHO REALLY HAVE SIGNIFICANT COGNITIVE DEFICITS? WE FINISH OUR RESEARCH IN ATN THAT 60% OF YOUTH NEW TO CARE HAD COGNITIVE DEFICITS ON NEUROPSYCHOLOGICAL TESTING, PROBABLY BASELINE OF WHAT THEY HAD. WE KNOW THEY HAVE HUGE AMOUNTS OF TRAUMA IN THEIR LIFE AND SO IT'S HARD TO ASK ABOUT ABUSE BECAUSE THEY DON'T LIKE TO BUT WE ARE GOING THEY DO HAVE A LOT OF THAT AS WELL. SO WE THINK YOU'LL END UP WITH TEXT MESSAGING, SOME APPS, AND STUFF TO TIER UP SOME OF THE EASIER ONES, AT FLEET THIS PARTICULAR POPULATION YOU'RE GOING TO NEED SOMETHING MORE PERSONAL. WE KNOW FROM MANY, MANY STUDIES THAT YOUTH DO NOT LIKE GOING FACE-TO-FACE INTERVENTIONS, ESPECIALLY WHEN IT IS THESE GREAT STUDIES OF 10 SESSIONS OR EVEN ONE STUDY, WITH 24 INDIVIDUAL SESSIONS FOR THE INTERVENTION. IT'S LIKE YOU'RE NOT GOING TO GET THEM TO DO THAT. THEY LOVE THEIR PHONE. IT'S A GREAT INCENTIVE. THE QUIIS, WILL THERE BE GREAT APPS AND NON-PERSONALIZED STUFF FOR SOME YOUTH AND THEN FIGURING OUT WHAT THE RIGHT DOSES ARE. >> THANK YOU FOR THIS RESEARCH. AUTO REALLY INTERESTING. I WAS CURES LOOKING AT FACEBOOK, LOOKING AT WHERE PEOPLE ARE ALREADY SPENDING A LOT OF TIME. I THINK ONE OF THE INTERESTING THINGS THAT DRAWS PEOPLE TO IT IS THE KIND OF SEEKING OF VALIDATION LIKE APHIS BOOK LIKE ON A COMMENT OR CONTINUALLY SEEKING THAT HAVING INTERACTIONS WITH THEIR PEERS EVEN IF IT IS ARTIFICIAL. I'M CURES IF YOU KIND OF THOUGHT ABOUT DRAWING PEOPLE IN TO ALMOST LIKE A SOCIAL NETWORK OF PEERS BUT ALSO I HEARD YOU MENTION THE CHATROOM IDEA BUT I THINK THAT SOMETHING WHERE THE POSTS AREN'T NECESSARILY AFEMORAL WHERE OTHER PEOPLE CAN GO IN AND LOOK THROUGH AND GET SUPPORT AND ALSO THIS WAY SCALE CLINICIAN, THE RATIO OF CLINICIANS TO PATIENT INTERACTIONS SO THAT ONE CLINICIAN CAN BE MODERATING AND HELPING 10-15 YOUTH AT ONCE. SO I'M CURES ABOUT THAT. >> SO LISA HIGH TO YOU AT THE UNIVERSITY OF NORTH CAROLINA DEVELOPED AN APP THROUGH SMALL BUSINESS GRANT, AND IT IS DOING SOME OF THIS WORK. I DON'T THINK THE ACTUAL CHATROOMS ARE IN REALTIME MODERATED BUT THEY ARE MODERATED WHERE THE FEEDBACK THAT GOES BACK AND FORTH BETWEEN NIECE YOUNG PEOPLE WHO ARE ALL PART OF THE INTERVENTION AND WHO ARE COMMUNICATING WITH EACH OTHER AND PROVIDING HOPEFULLY SUPPORT IS JUST GETTING READY TO START RIGHT NOW. SO I THINK WE WILL SEE. ONLY THERE ARE ALWAYS ISSUES AROUND CONFIDENTIALITY AND HOW DO YOU REALLY CONTROL THAT? SO FACEBOOK IS A GREAT WAY TO DO THAT ANDIETED WE KNOW ALL OF OUR PATIENTS ARE ON FACEBOOK BECAUSE THAT'S HOW WE FIND THEM NOW WHEN THEY DON'T SHOW UP, IS SENDING THEM A FACEBOOK MESSAGE. GIVES US A CA. >> I HEAR SOMETHING DIFFERENT. THAT RELADLE TO THE TITL ABOUT THIS MEETING, SELF AND OTHERS. YOUR INTERVENTIONIST IS KIND OF LIKE A PIER PLUS. PEER PLUS. YOU MADE A CONSCIOUS DECISION FOR YOUR INTERVENTION TO BE A RELATIVELY YOUNG, NON-MEDICAL, BEHAVIORAL HEALTH PROFESSIONAL SO THIS IS AN INFORMED PERSON WHO DOES THE CZECH IN, DOES REFERRALS IF NEEDED, IS THERE LIKE AN OLDER BROTHER, COUSIN, BIG BROTHER KIND OF INTERVENTION. AND THAT SEEMS PARTICULARLY IMPORTANT IN A MULTIPLY MARGINALIZED MINORITY POPULATION AND DID -- I REMEMBER YOU TALKING ABOUT QUALIFICATIONS AND SPECIFIC LACK THEREOF. DID BACKGROUND RESEARCH WITH THE YOUNG PEOPLE LEAD YOU TO THAT STRATEGIC CHOICE? >> WOULDN'T SAY BACKGROUND RESEARCH LED US TO THAT. I THINK THAT THERE WERE A COUPLE OF REASONS WHY. NUMBER 1, WHO YOUTH CONNECT WITH? THEY CONNECT WITH THE TYPE OF PEOPLE WHO WE WOULD BE HIRING AS BASELINE CASE MANAGERS OR ADHERENCE ASSISTANCE THAT IS WHAT HRSA AND THE GOVERNMENT HAS ACTUALLY FUNDED. NUMBER 2, YOU'RE RIGHT. THEY TEND TO BE YOUNG PENAL WHO ARE EXPERIENCED WITH THE LIVES OF THESE YOUNG PEOPLE. AND PEOPLE WHO ARE SUPPORTIVE WHO CHOSE CAREERS BECAUSE THEY LIKE TO HELP YOUNG PEOPLE WITH HIV. AND THEN LASTLY THEY DID IT BECAUSE OF COST. AND SPECIFICALLY NOT WANTING THIS TO BE A -- YOU KNOW DON'T WANT THE YOUTH TO THINK OF THIS AS A PSYCHOLOGICAL COUNSELING INTERVENTION. THEY WANTED THEM TO THINK ABOUT IT AS BEING A LITTLE BIT MORE CASUAL BUT ALSO BEING ABLE TO GIVE THEM WHAT THEY NEED. >> YOU MENTIONED THAT YOU HAVE GONE FURTHER AND YOU HAVE SOME OTHER STUDIES UNDERWAY DOING THE TEXT AND I WONDERED IF YOU THOUGHT ABOUT BECAUSE IT SEEMS THAT THIS SHOWS THAT PERHAPS USING SOME MORE DIFFERENT DESIGNS MIGHT BE BENEFICIAL. SO HAVE YOU THOUGHT ABOUT USING ADAPTIVE DESIGN, SUCH ADDS SMART DESIGN WHERE YOU COULD KEEP THE YOUTH IN AND GIVE THEM A TEXT MESSAGE OR GIVE THEM DIFFERENT ADHERENCE RATES PHONE CALLS OR TEXT MESSAGING? THE OTHER THING I THINK MOST INTERVENTION THAT IS REALLY DETERMINING WHAT IS THE MOST POTENT INTERVENTION WOULD BE IMPORTANT BECAUSE THOSE ARE REPORTS OF 3-5 MINUTES YOU SAID YOU DID IT TWICE. AND THERE IS A LOT OF THINGS THAT COULD MAKE THIS MORE POTENT. SO THERE ARE WAYS THAT YOU COULD USE PILOT DATA TO SOME EXTENT TO DO THAT. SO I JUST WONDERED IF YOU THOUGHT OF USING SOME OF THE MORE DIFFERENT DESIGNS THAT ARE NOW OUT THERE TO THINK THAT THIS GROUP WOULD ESPECIALLY BENEFIT FROM THESE TYPES OF DESIGNS. >> SO ABSOLUTELY. THAT IS WHAT WE ARE DEVELOPING AS A SMART TRIAL AROUND HOW TO TAKE THIS TO DIFFERENT LEVELS. THE PROBLEM IS WHEN YOU WANT A SMART TRIAL YOU WANT INTERVENTIONS THAT HAVE GOOD PILOT DAYA TO -- DATA TO TAKE YOU TO THE NEXT STEP AND THAT'S NOT REALLY THERE YET. I'M VERY INTERESTED IN TEXT MESSAGING. THE PROBLEMS WITH THAT IS THAT THEY ARE VERY IMPERFORM. JUST KIND OF REMINDERS AND EVEN IF THEY ASK YOU TO TEXT BACK, IT'S NOT A TWO WAY TEXT CONVERSATION WHICH IS HOW YOUTH MOSTLY -- MY KIDS LIVE THEIR LIFE, RIGHT? THEY ARE NOT TALKING TO PEOPLE. THEY ARE TEXTING BACK AND FORTH AND BACK AND FORTH. AND GET A LEVEL OF SUPPORT OF THAT. SO I'M HOPEFUL THERE WILL EVENTUALLY BE SOME LEVEL OF THAT KIND OF INTERACTIVE TEXTING VERSUS AUTOMATED. I DON'T KNOW WHICH WAY WE'LL TURN OUT TO BE. >> GOOD MORNING. CAN YOU HEAR ME? I'M EYE POSTDOCTORAL SCIENTIST AT COLUMBIA UNIVERSITY AND I HAVE A CLINICAL BACKGROUND IN NEUROLOGY MAINLY OF 10 YEARS AND I LIKE TO PRESENT SOCIAL MEDIA NETWORK, STRESS AND DEPRESSION AMONG THE DEMENTIA CAREGIVERS. I HAVE NO CONFLICT OF INTEREST. -- I LIKE TO PRESENT THE PROCESS OF SOCIAL MEDIA MINING, STRUCTURAL MINING AND CONTENT MINING. THE RESULTS ARE REPRESENTATIVE THAT STRUCTURE OF CAREGIVERS AND THEIR CONTENT. 6 LEADING CAUSED OF DEATH AND WE HAVE 5 MILLION AMERICANS SUFFERING FROM ALZHEIMER. ALMOST 10 MILLION AMERICANS PROVIDE UNPAID CARE FOR DEMENTIA, 8 BILLION HOURS OF CARE AND 94 BILLION DOLLARS. HAS ANYONE HAVE EXPERIENCE OF TAKING CARE OF DEMENTIA PATIENT AS A NURSE OR -- 87 PATIENTS ARE CARED FOR AT HOME AND THEY HAVE CHALLENGES OF EXCESSIVE STRESS, FATIGUE, ISOLATION AND LONELINESS AND OF COURSE THE FINANCIAL AND WORK COMPLICATIONS. DEMENTIA IS OVERWHELMING FOR THE FAMILY MEMBERS. FOR OUR TEAM WE ARE CURRENTLY STUDYING DEMENTIA CAREGIVERS AND TRYING TO DEVELOP AN INTERVENTION FOR THEM AND A SELF-MANAGEMENT SUPPLEMENT IS UNDER REVIEW. SOCIAL MEDIA MINING FOR SELF-MANAGEMENT. PHYSICAL ACTIVITY IN PARTICULAR. IN 2010, MY DISSERTATION I REPORTED THE STRATEGIES FOR SOCIAL NETWORK ANALYSIS IN THREE LEVELS, MACRO, BASAL AND MICROLEVEL TO DETECT TOPICS. AND I ALSO FOUND THAT 42% OF THE TWEETS REVEALED PSYCHOLOGICAL NEEDS ASSOCIATED WITH JOGGING. A PAPER CAME OUT IN JUNE AND IT HAS BEEN RECOGNIZED AS A GROUNDBREAKING FINDING AND WE FOUND PEOPLE IN NIGERIA WERE SPREADING THE WORD THAT WE HAVE ERK BOLA CASE IN LAGOS. LET'S WISH OUR HANDS. CRAZY! THAT'S WHAT THEY SPREAD. AND IT WENT TO 16 MILLION PEOPLE. AS YOU CAN SEE, THAT IS OF WISHING HANDS AND SELF-MANAGEMENT BEHAVIOR. IT IS PERFECT EXAMPLE OF SELF-MANAGEMENT. WHAT ABOUT CHRONIC DISEASE WHICH IS MORE DIFFICULT? DOES ANYBODY USE TWITTER? ONLY 3? YOU ARE NOT ALONE. I ONLY HAVE LIKE 40 FOLLOWERS. TWITTER IS A SHORT TEXT MESSAGE SYSTEM TO SHARE FEELINGS, OBSERVATIONS AND ACTIVITIES AND DAILY LIFE AND IT IS 9 YEARS OLD AND 300 MILLION ACTIVE USERS GENERATE OVER 500 MILLION TWEETS EVERY DAY WHICH IS A LOT OF DATA. IT CAN BE A VEHICLE TO MEASURE THE PUBLIC OPINION, HOWEVER, IT'S LARGELY UNEXPLORED AND A LOT OF STUDIES OUT THERE IS THAT ORAL OPINION THERE ARE VERY FEW INTERVENTION STUDIES 20% OF ADULTS WHO MAKE LESS THAN 30,000 DOLLARS USE TWITTER. UNLIKE FACEBOOK. MANY MINORITIES USE TWITTER. FOR EXAMPLE, 29% OF AFRICAN-AMERICANS USE TWITTER AND 16% OF HISPANIC USE TWITTER. SO FOR PEOPLE WHO -- I'M SO HAPPY I HAVE THIS SLIDE. FOR THE PEOPLE WHO DOES NOT USE TWITTER -- HARSH STAG FOR KEYWORDS -- [ OFF MIC ] ... IT'S NOT IMPOSSIBLE BECAUSE HE DID IT FOR ALS. FOR THE ICE BUCKET CHALLENGE. TWITTER HAS BEEN USED IN OTHER DISCIPLINES AND OTHER DEPARTMENTS. DURING THE BOSTON BOMBING THE WHOLE POLICE DEPARTMENT USED TWITTER AS A TOOL TO COLLECT INFORMATION AND DISSEMINATE THE INFORMATION. THERE IS PROBABLY A LOT OF YOU ALREADY SEEN THIS ONE BECAUSE A STUDY SHOWED THE LINE THAT REPRESENTED THE RATE AND THE SOLID LINE REPRESENTS THE FLU RATE BY TWITTER. AND AS YOU CAN SEE, TWO LINES ARE VERY HIGHLY CORRELATED MAPPER. THIS MODEL ANALYTIC STRATEGY. THIS IS VERY SIMPLE FORMULA BUT I LOVE IT. ACTIVITIES DEVELOPED 1948 AND THEN JUST HELPED ME TREMENDOUSLY. SO TO WHOM THEY ARE TALKING AND WHAT THEY ARE TALKING. SO THAT IS WHAT I DID IN 2010. USING THE TWITTER CHANNEL AND MY FUTURE QUESTION IS, WITH WHAT AFFECTS. I HAVEN'T GONE THERE YET. IT HAS BEEN 5 YEARS. THIS DIAGRAM SHOWS TWITTER MINING PROCESS. PROBABLY YOU ARE ALREADY FAMILIAR, IMPORT, PREPARE 95% OF THE DATA ANALYTICS ARE PREPARING AND THEN REDUCING THE BIG VOLUME AND ANALYZING IT. ANALYSIS STRUCTURE MINING AND CONTENT MINING, I CONTRIBUTED INTEREST SCIENCE FOR HOW TO ANALYZE BOTH. AND THEN AS YOU CAN SEE, THERE ARE A LOT OF NEEDS BECAUSE THE SOCIAL MEDIA MINING IS NEW OF THE THE STRUCTURE MINING IS A COMPREHENSIVE APPROACH TO SEE MULTIPLE LEVEL OF NETWORK STRUCTURE. AND WE HAVE A LOT OF THE MEASUREMENT IF YOU HAVE SOCIAL SCIENCE BACKGROUND, YOU KNOW LIKE THERE ARE THIRT-50 MEASURES. MACRO LEVEL, MESO LEVEL AND MICROLEVEL STRUCTURE AND CONTENT MINING IS CHEAP AND ULTIMATELY CONVENIENT WAY TO GRASP MAIN TOPICS OF WHAT THEY ARE TALKING. SO I WISH I HAD A COMPUTER TO SHARE WITH THIS 3D INTERACTIVE VISUALIZATION. THIS NETWORK SHOWS THE PERSON WHO -- DEMENTIA CARE GIVING IN ONE DAY. ONE QUICK SNAPSHOT FROM THE MACRO LEVEL. YOU CAN ZOOM IN AND SEE THE COMMUNITY STRUCTURE. THEN YOU CAN FURTHER TO MEAN AS YOU CAN SEE THE RELATIONSHIP AMONG THEM AND THEIR USER NAMES. SO WHAT THEY WERE TALKING WAS, I'M SOLE CAREGIVER TO MY MOM WITH DEMENTIA. NOT QUITE THE SAME BUT I KNOW THE STRESS AND ISOLATION ONE FEELS. SO THIS PERSON CLEARLY ISOLATION AND STRESS SO YOU CAN SEE DIRECTLY THERE IS IT A NEED FOR THE SELF-MANAGEMENT. TWO DIMENTIONAL BUT THE LEFT SIDE DEMENTIA CAREGIVER AND THE RIGHT ALZHEIMER'S CAREGIVER. BOTH HAVE OVERALL VARIED PARTS WITH MANY ISOLATES EXPRESSING FEELINGS. AND YOU CAN ALSO SEE THE WORDS AT THE CORE. CAN YOU GUESS WHAT ICEALATES THEM? [ OFF MIC ] >> RIGHT. I DIDN'T EXPECT YOU CAN ANSWER THAT. SO WE HAVE AN OCCASION FOR THAT IN THIS QUESTION. I PRACTICE THIS TALK A LOT AND NOBODY WAS LIKE WANTED TO ANSWER THAT. A COMMUNITY IS A COLLECTION OF THOSE WHO SHARE NORMS, ROLES AND COMMON PURPOSE. ONLY I FOUND IT WAS ONLY VERY SHORT PERIOD AMOUNT OF TIME. I ONLY FOUND 3-4 CORE GROUPS. NOW IT'S YOUR TURN. WHO DO YOU KNOWLEDGE WAS THE LEADER OF THAT COMMUNITY IN THE TWITTR TALKING ABOUT DEMENTIA CARE GIVING STRESS? CDC? A NURSE? A FOUNDATION? ALL WRONG. SO THEY ARE CAREGIVERS. THEY ARE FORMER CAREGIVERS. SO THEY ACT LIKE AUTHORITY. THEY RECEIVE A LOT OF INFORMATION FROM WIDE RANGE OF OTHERS AND SEND INFORMATION TO THE LARGE NUMBER OF OTHERS. AND I SAW THEY WERE SUPPORTING WITH ANOTHER PERSON WAS POSTING AND ANOTHER PERSON WAS ANSWERING. AND TING IS GOOD TO GIVE FEEDBACK. NOW LET'S MOVE ON TO THE MIC ROW LEVEL STRUCTURE, THE FRIENDSHIPS. TRIAD SENSE SUSDYNAMICS MOON THE COMMUNICATION AMONG 3 PEOPLE AND THERE ARE 16 DIFFERENT FRIENDSHIP STYLES, BALANCED, HIERARCHAL AND RANKED AND FORBIDDEN. AND IN THEORY, BALANCED TYPE IS IDEAL COMMUNICATION. FOR EXAMPLE, MY PARENTS AND MY SISTER GET A BALANCED COMMUNICATION STYLE. MY SISTER WAS ASKED FROM MY MOM, SHE IS A CAREGIVER. MOM, ARE YOU OKAY FOR PICKING UP YOUR GRANDMOTHER? AND MY FATHER SAYS IT'S A LOT OF STRESS! AND MY MOTHER WAS ANSWERING, NO IT'S OKAY. YOU'RE AUNT IS HELPING. I'M FINE. I'M FINE. MY PARENTS AND I WE HAVE A HIERARCHAL KIND OF COMMUNICATION STYLE, UNFORTUNATELY, IT IS ALSO VALUED BECAUSE I HAVE A GOOD COMMUNICATION WITH MY MOM SO, MY MOM IS STRAIGHT TO THE POINT AND BE VERY HONEST IN TELLING ME THAT I'M GETTING DEPRESSED AND LOTS OF STRESS ABOUT TAKING CARE OF YOUR GRANDMOTHER. THIS IS MY GRANDMOTHER. 95. SO WHICH RELATIONSHIP IS THE WORST? WHICH COMMUNICATION RELATIONSHIP OUT OF THAT 16? SECOND AND FIRST. RIGHT. UNFORTUNATELY THE WHAT I FOUND WAS THE WORST COMMUNICATION STYLE OR NETWORK WHERE TWO MILLION COMMUNICATION NETWORK AND THE NAME IS A CLUSTER ABILITY. MEANING YOU CAN CLUSTER THEM IN THE FUTURE BUT NO IT IS ISOLATED. SO THEY WERE SAYING I'M NOT VERY COMFORTABLE WITH THEIR LIFESTYLE AND NEEDS AND THIS PERSON IS THE DAUGHTER OF A GENTLEMAN WHO HAS DEMENTIA AND SHE HAS TO SPEND THE WEEKEND WITH HER FATHER AND SHE WAS UNCOMFORTABLE TO BE WITH HIM. AND ANOTHER POSTED THIS WHOLE PROCESS IS HARD TO PROCESS AND I FEEL LIKE I SHOULD BE STRONGER AND I ALSO FOUND OTHER TYPES SUCH AS BALANCED TYPES, BUT IT WAS LESS THAN 2000. AND THE RANGE CLUSTER TOO. SO IT IS A RANKED CLUSTER OF ANNOUNCEMENTS SUCH AS HELP FAMILY CAREGIVERS REDUCE STRESS. AND STAY HEALTHY. NOW LET'S MOVE TO CONTENT ANALYSIS. I USE OTHER TOPICS DEFYING A WORD INTO ONE WORD, TWO WORDS AND 3 WORDS. UNIGRAM IS ONE WORD AND BIGRAM IS TWO WORDS BUT IF YOU SEPARATE THOSE WORDS, IT HAS DIFFERENT MEANINGS. AND KEEP IN MIND. THIS IS RESULT OF 5000 TWEETS IN DEMENTIA AND CAREGIVER IN AUGUST. AS YOU CAN SEE, FEAR, DEPRESSION, DEEP, SLOW, SAD, DOWN. YOU CAN SEE THESE SELF-MANAGEMENT AS WELL. THIS GRAPH SHOWS LOCATION OF TWEETS MENTIONED DEMENTIA CAREGIVER IN ONE DAY. AS YOU CAN SEE, FLORIDA, WHICH IS RETIREMENT PLACE. THE TWITTERS COMING FROM THERE AND AN ADVENTURE LIKE NO OTHER. YOU CAN SEE FRUSTRATION AND THE NEED FOR HUMOR SOFTENED MY DESPAIR. ANALYSIS OF RESULTS AND HALF OF THE TWEETS WERE UNPLEASANT, STRAIN, STRESS, BURDEN, STRESSFUL. THIS GRAPH SHOWS TWITTER SENTIMENTS IN THREE DAYS AROUND NOONTIME EVERY DAY, UNPLEASANT, UNHAPPY, TWEETS COMING OUT. THIS PARENT FROM THE ACTIVITY USUALLY SEE THIS ACTIVITY OF THE TWEETS AROUND 9:00 AND WILL AFTER 5 P.M. AND OTHER DISEASES TOO. SO NOW LET'S TALK ABOUT FINDINGS. OVERALL, WHAT WE FOUND WAS THAT THE TWEETS WERE NOT RECIPROCAL. MANY ISOLATES EXPRESSED THEIR FEELINGS AND THEIR OWN EXPERIENCE VOLUNTARILY. WHICH IS VERY IMPORTANT. SO IT'S NOT A STUDY. NOBODY ASKED. THEY WERE VOL TIRELIY EXPRESSING THEIR OWN FEELINGS AND EXPERIENCE AND VOLUNTARILY AND AUTONOMY IS VERY CRUCIAL SIGH COLLEGEY NEEDS FOR SELF-MANAGEMENT. IN OTHER WORDS, IN THE MICROLEVEL, WE FOUND THAT RELATIONSHIP WAS CLOSER ABILITY -- CLUSTER ABILITY. THERE ARE TWO MILLION CLUSTERRABILITY TRIALS SO YOU HAVE THE POTENTIAL TO BE CLUSTERED AND GROUPED IN THE FUTURE. FROM THE CONTENT ANALYSIS, WE FOUND THAT THE DEMENTIA CAREGIVERS PSYCHOLOGY NEEDS TOO. DEMENTIA CAREGIVERS GAVE AND RECEIVED AFFECTION AND SUPPORT FROM OTHERS AND PRESSED STRESSORS AND COPING STRATEGIES. ON THE TOP IS THE STRESS -- STRESSOR AND THE STRESS DIAGRAM. EXISTING COMMUNITY GROUPS IN THE TWITTER MAY BE USED AS A VEHICLE TO SUPPORT DEMENTIA CAREGIVERS IN STRESS MANAGEMENT AND TO FULFILL THE HUMAN INHERENT DESIRE TO BELONG AND TO BE A PART OF SOMETHING. SO, AGAIN, THE BELONGINGNESS THAT THE DEMENTIA CAREGIVERS HAVE EMOTIONAL NEED TO BE ACCEPTED AS A MEMBER OF THE GROUP OF THE SO YOU CAN SEE THE TWITTER MAY HAVE A POTENTIAL FOR SELF-MANAGEMENT AND STRESS MANAGEMENT. TO FULFILL THE PSYCHOLOGY NEEDS LIKE BELONGINGNESS AND AUTONOMY. I USE THEM METHOD REQUIRES MINIMAL PROGRAMMING SKILL AND I USED ALL THE SOFTWARE WHICH IS OPEN SOURCE. HOWEVER, THE GENERALIZESSABILITY IS GREATLY LIMITED TO THE TWITTER POPULATION AND TOO OFTEN THE PROBLEM SOCIAL MEDIA DATA PROVIDE INSTANT REACTION AND THOUGHTS FROM THE CAREGIVERS AND PATIENTS IN THE REAL WORLD. AND IN THE NOVEL APPLICATION OF WEB MINING OF SOCIAL MEDIA THEY GIVE US THE VIEW KNOWLEDGE TO UNDERSTAND ABOUT DEMENTIA CAREGIVERS AND SELF-MANAGEMENT NEEDS. THIS PICTURE IS MY WALK AND I POSTED ON MY FACEBOOK. THANK YOU VERY MUCH FOR YOUR ATTENTION. [ APPLAUSE ] ANY QUESTIONS? >> HI. THANK YOU FOR YOUR TALK. I'M FROM VANDERBILT. IT OCCURS TO ME THAT SOME OF THE ISOLATES WERE NOT USING HASHTAGS AND I'M WONDER FIGURE THE HASHTAG IS DIRECTLY -- THE ABILITY TO USE HASHTAGS CORRECTLY IS DIRECTLY ASSOCIATED WITH THE LIKELIHOOD OF RECEIVING A RESPONSE FROM SOMEBODY ELSE IN THE COMMUNITY? BECAUSE THEY CAN ACCESS AND READ YOUR TWEET MORE READILY. SO CAN YOU TALK ABOUT THAT A LITTLE BIT? >> SO, THOSE ISOLATES ACTUALLY WERE USING THE HASHTAG. DEMENTIA AND CAREGIVERS. SO, THAT WAY I WAS ABLE TO PULL THOSE DATA. >> [ OFF MIC ] >> BOTH. IT WAS QUICK KIND OF -- PROJECT SO I OHM USED HASHTAG. AND OBVIOUSLY, YOU'RE RIGHT. YOUR QUESTION IS VALID. OBVIOUSLY PEOPLE DO NOT KNOW HOW TO -- I CAN SEE THAT PEOPLE DO NOT KNOW HOW TO ANSWER BECAUSE I KNOW PEOPLE PROBABLY THAT TWEETS ARE SEEN BY OTHERS AND PROBABLY THEY CAN ANSWER YOU AND GIVE YOU? SUPPORT, YES. >> ANY OTHER QUESTIONS? >> DIDN'T REALIZE MY SUPER HUMAN STRENGTH. FIRST OF ALL, YOU'RE PRACTICING PAID OFF. JUST A BEAUTIFUL, BEAUTIFUL JOB. I WILL TWEET WHOEVER YOU WANT BACK AT COLUMBIA. I'LL TESTIFY TO THAT. FOR THESE ISOLATES, WHAT IS THE PERCENTAGE F ANY, OF TWEETING BACK WITH THESE USERS TO FORM THAT FENCE OF COMMUNITY? I KNOW THE NUMBER OF DIAGRAMS THAT YOU SHOWED US WITH THE COMMUNICATION TRIANGLES AND NETWORKS BUT THESE PEOPLE ARE OUT THERE ISOLATED WITH THEIR LOVED ONE WHO IS SLIPPING AWAY AND SO THEY ARE COPING BY EXPRESSING THEMSELVES. HOW MUCH INTERACTION IS THERE WITH NOT JUST THESE DAUGHTERS WHO ARE THE COMMUNITY LEADERS, BUT ANYONE ELSE WHO MIGHT BE TWEETING BACK? >> SO THE QUESTION WAS THAT IN TERMS OF THE ISOLATES AND THE WHO CAN BE THE POSSIBLE SUPPORTER AND WHO CAN RESPOND TO THAT TWEET. AND I THINK THAT IT IS OUR FUTURE WORK FOR THE HEALTH CARE PROVIDERS AND ALSO THE LEADERS CAN HELP FOR THEM TO BECOME A PART OF THE GROUP BECAUSE THE MICROLEVEL RESULTS STAY IS CLUSTER ABILITY. IT CAN BE CLUSTERED IN THE FUTURE. SO I SEE MY RESPONSIBILITY TOO AND ALSO WHOMEVER USED TWITTER. LIKE MAY FRIEND, I HAVE TO ASK HER TO USE TWITTER TO ANSWER WHO IS -- HEALTH CARE PROVIDERS. >> WE HAVE TIME FOR ONE MORE QUESTION. >> [ OFF MIC ] >> THIS HAS BEEN SO STIMULATING AND I FELT A LITTLE LYING WE NEEDED TO GET SOME ENERGY GOING. IT'S BEEN DELIGHTFUL AND A PLEASURE FOR ME TO HEAR ALL OF THESE DIFFERENT INPUTS. IT'S LIKE WE GOT THIS WEB OF MANY, MANY DIFFERENT IDEAS COMING TOGETHER AND WHERE WE INTERFACE HAS A LOT OF POWER AND I'M EXCITED ABOUT BEING HERE. OVER THE LAST 22 YEARS, I HAVE BEEN WORKING IN THE FIELD OF PRIMARILY, IN HEALTH PROMOTION AND DISEASE PREVENTION. SO MOST OF MY FOCUS HAS BEEN ON HOW DO YOU GET MESSAGES OUT THAT PEOPLE WILL PAY ATTENTION TO, ENGAGE IN AND THEN CHANGE THEIR BEHAVIOR. MOST OF IT HAS BEEN FOCUSED ON NOT JUST THE MESSAGES BUT THE CULTURAL ADAPTATION AND MOSTLY WORKING WITH SOCIAL INTERACTIONS WITH HEALTH WORKERS AND THE COMMUNITY AND I LIVE IN ARIZONA SO WE HAVE A LOT OF WORK WE DO WITH THE LATINO POPULATION. WHY AM I HERE FOR SOMETHING THAT HAS TO DO WITH SELF MANAGE ISN'T ALTHOUGH A LOT OF MY WORK HAS GONE AROUND HEALTH PRO MENTION MESSAGES IN THE CONTEXT OF CANCER PREVENTION AND SCREENING. ALSO BEEN WORKING QUITE A BIT IN THE LAST EIGHT YEARS WITH BREAST CANCER SURVIVORS. AND IN THAT CONTEXT, I THINK WE MIGHT BE SEEING THAT MORE AS A CHRONIC DISEASE MANAGEMENT. IT'S BEGINNING TO BE THOUGHT OF THAT WAY. WITH THE THAT BACKGROUND I'D LIKE TO SAY THAT TODAY I WILL FOCUS LESS ON ALL OF THOSE SOCIOCULTURAL KIND OF THINGS AND MORE ON THE INTERNAL PROCESS OF WHAT WE NEED TO CHANGE INSIDE ONE'S SELF? HOW DO WE SHIFT OUR INTERNAL ENVIRONMENT? HOW DO WE HELP OTHERS SHIFT THEIR INTERNAL IN ORDER TO HELP CREATE THE BLARE CHANGE THAT WE WANT TO CREATE? WHETHER IT IS IT IN THE CONTEXT OF GETTING PEOPLE OR HEALTHY PEOPLE TO CHANGE THEIR BEHAVIOR AND DO A BETTER JOB OF PREVENTING, AS WELL AS ALL THE WAY DOWN THE CONTINUUM TO PEOPLE WHO ARE SUFFERING FROM SOME KIND OF DISEASE AND HAVE A LOT OF THINGS THEY HAVE TO BALANCE IN ORDER TO MANAGE. SO, WE DO HAVE A CONTINUED PROBLEM IN THIS COUNTRY WITH BEHAVIOR CHANGE NOT BEING PREVALENT WITH THE THINGS WE LIKE PEOPLE TO DO THAT DIETS WE WOULD LIKE FOR THEM TO ADOPT. ALL OF THOSE INVOLVED IN PUBLIC HEALTH INITIATIVES FIND THAT 2 IS IT ALARMING THE NEWS GETS WORSE AND WORSE. SO NOT ONLY STRUGGLING TO GET PEOPLE TO QUIT SMOKING AND MANAGE THEIR WEIGHT, ALL OF THOSE THINGS THERE ARE BUT ALSO STRUGGLING WITH OPEN AND CONTINUED VIOLENCE. DESPITE ALL THE THINGS THAT WE AS PUBLIC HEALTH PROFESSIONALS TRY TO DO, OR AS HEALTH CARE PROFESSIONALS TRY TO DO, WE STRUGGLE TO GET PAST WHATEVER IT IS THAT IS DRIVING THIS BEHAVIOR UP AND OUT. AND I KEEP THINKING ABOUT WHAT IS THE ROUTE CAUSE OF THIS NON-MANAGEMENT OF SELF? WE HAVE THIS IDEA THAT WE JUST THERE TO REACH PEOPLE WHO THINK THEY ARE IN THE DRIVER'S SEAT AND GET THEM TO MAKE THEIR CHOICES CONSCIOUS DECISION-MAKING, DEAL WITH THE RATIONAL INFORMATION THAT WE ARE GIVING THEM AND THAT THEY WILL BUCKLE DOWN AND CHANGE THEIR BEHAVIOR. AND THE INDIVIDUALS FEEL LIKE I'M DRIVING THIS THING. AND YET, I KEEP HAVING THIS FEELING THAT WE ARE ALL RIDING THIS GREAT BIG ELEPHANT THAT IS GOING ITS OWN WAY AND WE HAVE TO BE ADDRESSING PERHAPS WHAT IS BOWNEATH THAT. SO WE THINK WE ARE IN THE DRIVER'S SEAT AND WE GET SIDETRACKED AT EVERY TURN. AND THE QUESTION TO ME IS, WHAT IS THIS ELEPHANT THAT KEEPS US FROM STAYING ON TRACK? AND THEN, DOING WORK WITH THE -- WITH EVEN ORGANIZATIONS LIKE THE AMERICAN SOCIETY FOR OR THE COLLEGE OF SPORTS MEDICINE. I GET INVITED TO DO THINGS MORE EXERCISE AND NUTRITION RELATED. AND I KEEP WORKING WITH PEOPLE WHO ARE BELIEVING THAT IF WE GET PEOPLE TO EXERCISE AND GET PEOPLE TO CHANGE THEIR NUTRITION AND GET THEM TO CHANGE THEIR SLEEP BEHAVIOR, THAT WE WILL GET THE RESULTS WE WANT. AND I STILL KEEP SAYING THAT UNDERNEATH THAT, WE PROBABLY HAVE SOMETHING THAT IS LIKE THE SECRET SAUCE THAT NEEDS TO BE ADDRESSED AND I'M HEARING A LOT OF PEOPLE IN HERE THAT ARE PRESENTING TODAY WHO ARE -- THEY ARE EACH COMING UP WITH THE SECRET SAUCE WE GET THEM TO SLEEP, GET THEM TO FOCUS THEIR COGNITIVE FUNCTION BETTER AND TEACH THEM THESE THINGS AND THEY THINK WE ARE RIGHT ON TRACK WITH THAT. THOSE ARE SOME OF THE PIECE THAT IS GO INTO THAT SECRET SAUCE. SO, GENERALLY, IN THE PUBLIC HEALTH ARENA, WE LOOK AT HOW TO ATTEMPT TO INFLUENCE THIS MASSIVEET FACE OF BEHAVIOR AND WE THINK OF RATIONAL BASE COST BENEFIT ANALYSIS AND DO ROLE MODELS AND DO THINGS THAT ARE HELPING TO CHANGE PEOPLE'S ATTITUDES AND GETTING THEM ENGAGED AND WORK WITH SOCIAL NORMS AND CULTURAL APPEALS. SO THOSE ARE ALL THINGS THAT ARE PART OF WHAT MIGHT BE HELPFUL. BUT WHAT I'M SEEING IS THAT THERE ARE SO MANY THINGS THAT ARE PART OF THE MASSIVE OR MASS OF FACTORS THAT SEEM TO BE CAUSING THE DOWNFALL THAT WE ARE NOT ADDRESSING. AND IT ISN'T THAT WE CAN ADDRESS THEM BY GOING AFTER THE RATIONAL. SO THIS IS A MODEL THAT WAS DEVELOPED WITH WORK THAT I HAVE BEEN DOING WITH BREAST CANCER SURVIVORS AND EVEN THOUGH I'M LOOKING AT ADIPOSITY AS THE OUTCOME WE ARE ATTEMPTING TO DEAL WITH. YOU COULD SUBSTITUTE ANY SYMPTOM OR PROBLEM OR EVEN DISEASE OUTCOME AT THE END OF THIS AXIS AND THESE ARE JUST SOME OF THE VARIABLES THAT MIGHT BE INVOLVED. SO, WHAT I'M PROPOSING HERE AND THIS IS NOT UNLIKE SOME THINGS I HEARD HERE TODAY, IS THAT IN THE CONTEXT OF SOMEONE WHO WAS DIAGNOSED WITH BREAST CANCER AND OVER TIME TO EXPERIENCE TREATMENT AND ALL THE EMOTIONAL DISTRESS THAT GOES ALONG WITH THAT. OVER TIME, THIS BEGINS TO BE A DISRUPTION IN THE HPA AXIS AND WOMEN WHO HAVE GONE THROUGH THIS, USUALLY FEEL VERY PHYSICALLY POOR AND ALSO FEELING -- FEELING VERY EMOTIONALLY POOR AND OVER TIME, I THINK THESE PATTERNS BEGIN TO SPIRAL DOWNWARD. SO CORTIZOL PATTERN GETS DISRUPTIVE AND WE SEEN IT'S NOT A TYPICAL FOR A WOMAN WITH PET STATIC CANCER TO BE NUT A POSITION WHERE HER CORTISOL PATTERNS ARE NO LONGER HAVING A PEAK IN THE MORNING AND A NICE DROP-OFF DURING THE DAY. OVER TIME IT GETS FLATTER AND FLATTER AND THEN THAT FLAT PATTERN GETS LOWER AND LOWER AND THERE IS VERY LITTLE STRESS REACTIVITY. SO THERE IS SLEEP DISTURBANCE. ONE OF THE MORE CHRONIC CONSEQUENCES OF BREAST CANCER TREATMENT AND THE TIME EVEN DURING RECOVERY. SEDENTARINESS. A LOT OF WOMEN WHO GET BREAST CANCER ARE OVERWEIGHT AND ADD THE SEDENTARINESS AND THE PATTERN. INFLAMMATION PICKING UP -- JUST A COUPLE OF EXAMPLES. NOW FEELING EMOTIONALLY POOR, AND THE EMOTIONAL DISTRESS THAT OCCURS, THE FEELING THAT ONE GETS CONTINUES ON AND THEN THE FEAR THAT IS GO ON THROUGHOUT THE TIME OF TREATMENT. WORN OF THE THINGS I HEARD MORE OF AND SEE IN THE LITERATURE IS THIS BODY ASSOCIATION. IT'S LIKE JUST NOT COOL WITH THIS. AND I'M JUST GOING TO CHECK OUT AND I HEARD WOMEN DESCRIBE THAT QUITE A BIT. SO THIS SUMMERY CHANGES FOR WOMEN AND THEN THEIR ENERGY IN TAKE, THEIR EMOTIONAL EATING CAN GET KICKED UP. SO ALL OF THIS GOES TOWARDS ADIPOSITY, INCREASED BMI OF POORER BODY COMPOSITION. SO THIS IS JUST ONE MODEL. A LOT OF THINGS ARE LEFT OUT OF HERE. I THINK THAT IT BE VERY EASY TO SEE HOW THIS COULD BE PUT ON THIS MAP SOME PLACE. COGNITIVE FUNCTION DECLINES. THIS ISN'T JUST BREAST CANCER SURVIVORS. THIS IS MANY PEOPLE WHO GO THROUGH SOME KIND OF TRAUMATIC STRESS THAT COULD LAND WITH OVERWEIGHT OR COULD LAND ABOUT MANY, MANY OTHER HEALTH CONSEQUENCES. I'D LIKE TO GIVE ANOTHER EXAMPLE OF WHERE THINGS SEEM TO FALL APART. EARLY CHILDHOOD TRAUMA HAS ALREADY BEEN DISCUSSED TODAY AND CHILD ABUSE. WE KNOW THAT THE TRAUMA LOSS, ABUSE, NEGLECT, THESE ARE VERY PREVALENT IN THE POPULATION WITH EARLY CHILDHOOD TRAUMA THAT FOR A LARGE PROPORTION, JUST ONE EVENT, JUST RESPONSE RELATIONSHIP TO EARLY CHILDHOOD TRAUMA AND BEHAVIORAL PROBLEMS LATER AS WELL AS THE CONSEQUENCES OF HEALTH PROBLEMS. SO PSYCHIATRIC DIAGNOSIS, STRESS OVERLOAD, PHYSIOLOGICAL HEALTH I BELIEVE CARATS AND ADDICTION IS MUCH MORE COMMON -- HEALTH BEHAVIORS -- TOBACCO USE AND OBESITY AND DOWN THE LINE. WHAT DO WE DO ABOUT THIS? LET'S LOOK BACK IN TIME AT HOW EARLY CULTURES MAY HAVE WORKED WITH THESE KINDS OF CHRONIC ISSUES. HOW COMMUNITY AND STORY TELLING IN THE CULTURAL CONTEXT HAS MADE A DIFFERENCE IN CHANGING PEOPLE'S LIVES OVER TIME AND THE WORK THAT HAS BEEN DONE MOST RECENTLY WITH STORY TELLING IS MOSTLY IN THE CONTEXT OF WORKING WITH CHANGING BEHAVIOR NOW IN HEALTH CONTEXT SO SOME OF THE ONES -- HAVE YOU SEEN SOME OF THE RESEARCH OUT THERE ON STORY TELLING AND WHAT KIND OF THINGS HAVE YOU SEEN THAT WE HAVE BEEN ABLE TO CHANGE? >> [ OFF MIC ] STORY TELLING? I'M NOT FAMILIAR WITH THAT. ON PARTICULAR LIFESTYLE ISSUES OR JUST ACROSS -- >> [ OFF MIC ] >> BEE ARE SEEING MORE LITERATURE AROUND THE ISSUES. STORY TELL AND LIFESTYLE BEHAVIORS AND IN THIS CASE, THE ONE I'M PROBABLY GIVING THE BEST EXAMPLE OUT THERE OF A REALLY SOLID RANDOMIZED CONTROL TRIAL IS HOUSTON'S WORK LOOKING AT CONTROLLING HYPERTENSION. SO, IN MY OWN WORK, I HAVE DONE A COUPLE OF DIFFERENT WAYS OF WORKING WITH STORY TELLING BOTH IN THE CLINIC SETTING WHERE WE HAD VIDEOS THAT WERE COMPILED STORIES THAT WERE USING STORIES FROM THE POPULATION THAT WE WORK WITH AND THEN COMPILING IT INTO A SINGLE STORY, PAPA HAS TO GET THIS -- IT'S AROUND COLORECTAL SCREENING AND THE DAUGHTERS ARE WORRIED ABOUT IT AND THEN IN THE END YES, HE HAD A POLYP BUT EVERYTHING IS GOING TO BE OKAY NOW. AND THEN THEY LEARN WHY THAT WAS SO DARN IMPORTANT AND THEN ANOTHER SETTING WHERE WE WORKED IN THE COMMUNITY AND TOLD STORIES WITHIN THE CONTEXT OF THE EDUCATIONAL SESSIONS. SO WE CREATED ALMOST LIKE A SERIAL STORY LIKE THE NOVELLAS AND A LOT OF RELATIONSHIP STUFF GOING ON SO YOU GET HOOKED AND YOU GOT COME BACK NEXT WEEK TO THE CLASS IN ORDER TO GET THE NEXT INSTALLMENT OF WHAT IS GOING ON IN THE STORY. BUT WE REALLY FOUND SOME POWERFUL AFFECTS OF THESE STORIES. ONE OF MY WEAKNESSES AS A RESEARCHER IS I ALWAYS LOVE TO CREATE SOME KIND OF CONTROL GROUP. EVERYBODY GETS SOMETHING GOOD IN OUR CONTROL GROUP TOO. BUT IN THE END, WE FOUND THAT IT WAS THE ENGAGEMENT THAT SEEMED TO MAYBE THE MOST DIFFERENCE IN WHETHER OR NOT PEOPLE CHANGED THEIR BEHAVIOR AND MAINTAINED THAT BEHAVIOR CHANGE IT'S BEEN A IMPORTANT PART OF THE WORK THEY HAVE BEEN DOING AROUND THE ISSUE OF BEHAVIOR CHANGE BUT I DON'T THINK THAT IT NECESSARILY GETS AT THE DEEPEST LEVELS WHAT HAVE WE NEED TO BE WORKING WITH. IT HAS THE POTENTIAL FOR DOING THAT. SO HERE IS WHERE I HAVE MADE A SHIFT IN THINKING ABOUT LOOKING AT HOW NARRATIVE MAY WORK IN A DIFFERENT WAY, DEEPER THAN THE WAY THE STORY DOES. AND THE STORY JUST OBVIOUSLY HAS, IF YOU IDENTIFY WITH THE STORY, AND YOU SEE PEOPLE IN THERE THAT ARE DOING THINGS LIKE I CAN DO THAT TOO, THE ROLE MODELING, THE IDENTIFICATION, THE EMOTIONAL ENGAGEMENT, SOMETIMES SUGGESTION IS THERE THAT THE EMOTIONAL ENGAGEMENT HELPS TO YOU BY PASS A LOT OF TALK IN YOUR BRAIN THAT SAYS WHY YOU WOULDN'T DO IT T LIKE CARRIES YOU AWAY, THE TRANSPORTATION IN THE STORY MAY CARRY YOU INTO IT. I THINK THERE IS A LOT OF POWER TO THOSE STORIES. YET, I THINK THAT THERE MIGHT BE AN UNDERLYING FACTOR THAT WE HAVE NOT REACHED THE POTENTIAL OF AND THAT IS WHERE STORY TELLING ALLOWS US TO ENGAGE WITH THE EMOTIONAL CONTENT OF WHAT SOMEBODY IS SHARING IF THEY ARE REALLY SHARING IT AT A DEEP LEVEL AND DISCLOSING INFORMATION THAT MIGHT HELP MORE DEEPLY COULD WHAT MIGHT BE AT THE ROUTE OF WHAT IS KEEPING THEM FROM CHANGING THAT BEHAVIOR. SO, IN THIS MODEL, THIS IS ACTUALLY BASED, THIS FIRST PART IS BASED ON WORK THAT WE HAVE DONE ON DEVELOPING A MODEL OF NARRATIVE AS CULTURECENTRIC HEALTH PROMOTION AND THEN BEE GO OFF COURSE START LOOKING AT OTHER FACTORS TO LOOK AT NOT JUST BEHAVIORAL OUTCOMES INITIALLY BUT ALSO WHAT HAPPENS IN THE EMOTIONAL TOLLS CHANGE IT. SO THE MEDIATORS HERE ARE WITH A STORE THEY WILL REALLY HAVE THE POWER TO MAKE A DIFFERENCE. YOU GOT THE EMOTIONAL ENGAGEMENT AND ABSORPTION AND IDENTIFICATION AND VERY PERSONAL AND CULTURAL ELEMENTS AND THEN THIS IS THE REALLY KEY PIECE HERE IS THAT WE ARE SEEING THAT THE EMOTIONAL EXPRESSION HELPS OTHERS TO BECOME MORE FREE OF THEIR OWN EMOTIONAL EXPRESSION THEIR ACCEPTANCE. THEY ARE LIKE I'M NOT SURE IT'S OKAY TO FEEL THIS FEAR AND TIED UP IN THAT EMOTIONAL BALL TO KEEP PEOPLE FROM BEING ABLE TO MOVE FORWARD AND BEHAVE IN A DIFFERENT WAY AND THE EMOTIONAL PROCESS THING REHEARSAL PIECE ALLOWS A VICARIOUS REHEARSAL SO MANAGING WHAT I MIGHT DO OR SAY IN THE FUTURE COULD HELP WITH THIS ALSO. WHICH THEN WE SEE PRODUCES EMOTIONAL PROCESSING, SOMATIC REENTERIGRATION AND THEN CREATING AN OPPORTUNITY FOR EMOTIONAL WELL-BEING AND HAS CAPACITY FOR BEHAVIOR CHANGE. I HAVE GOT A SMALL PIECE OF DATA FROM A PILOT STUDY WHERE WE SHOWED A SERIES OF VIDEOS CALLED WOMEN'S STORIES, WOMEN FROM MULTICULTURAL PANEL OF WOMEN SHARING THEIR STORIES ABOUT THEIR EXPERIENCES OF BEING DIAGNOSED AND THEN MAKING THEIR TREATMENT DECISIONS AND GOING THROUGH EVEN ALL THE WAY TO INTIMACY ISSUES AND HOW DO YOU TALK TO YOUR FAMILY ABOUT THIS? WOMEN WATCHING THIS EARLY ON IN THEIR DIAGNOSIS WERE SHOWN TO HAVE REALLY REDUCED EMOTIONAL DISTRESS DURING THE TIME OF THEIR TREATMENT. SO WE HAD A LITTLE BIT OF EVIDENCE IN WORKING WITH THIS MODEL. STILL DEVELOPING. SO STORY TELLING EXPERIENCE. HOW DOES SEEING OTHERS COPE SIMULATE THE SOCIAL REHEARSAL AND THE VICARIOUS CONNECTION? MIGHT THERE BE SOMETHING IN THIS THAT HELPS US TO MANAGE NOT JUST CHANGE OUR BEHAVIOR BUT MANAGE OUR EMOTIONS AROUND THESE ISSUES? AND THEN WHAT IF STORY TELLERS CAN CONNECT THE DOTS FROM UNDERLYING TRAUMA TO CURRENT BEHAVIORS? THE UNDERLYING TRAUMA WAS JUST A DIAGNOSIS OF BREAST CANCER, IT'S EASIER TO SEE HOW THAT TRANSLATION WOULD BE MADE. IF THE UNDERLYING TRAUMA KEEPING ME FROM QUITTING MY ADDICTION IS A BIGGER ISSUE, IT MIGHT TAKE SOME WORK TO REALLY CAPTURE THOSE KIND OF STORIES THAT HELP PEOPLE TO SEE HOW SOMEONE ELSE, EACH WITH THE KIND OF BACKGROUND, AND EACH WITH CHILDHOOD ABUSE, THAT THEY ARE ABLE TO SHARE THEIR STORY THAT SOMEONE ELSE MAY BE ABLE TO RESPOND TO THAT AS IF IT WERE A THERAPEUTIC INTERVENTION. WHAT IF TELLING STORIES, JUST GOING DEEPER THAN HOW I CHANGE MY EATING BEHAVIOR, ACTUALLY RELIEVES THE TRAUMA? LIKE AN EXAMPLE IS FROM PLANNING HOW I SHALL EAT DIFFERENTLY AND HEARING A STORY ABOUT THAT, MIGHT BE CHANGED DRAMATICALLY IF THE STORY WHAT WAS ABOUT UNDERSTANDING AND DISCOVERING WHAT WAS I REALLY HUNGRY FOR? AND GETTING TO THAT THOSE DEEPER SPIRITUAL AND SOCIAL NEEDS AND BEING ABLE TO SHARE THAT IN THE STORY OF HOW MIGHT THAT IMPACT OTHERS IN THEIR RECEPTION OF THAT? AND THEN IF A STORY HAS DEEP HUMAN ROOTS IN THE TELLING HOW MIGHT IT REACH THE LISTENER? SO WE HAVE GOT BITS AND PIECE THAT IS WE ARE DOING WITH STORY TELLING. MOST OF WHAT I HAVE DONE IS CAPTURE THE STORIES, PACKAGE THEM AND THEN SHARE THEM SO THEY MIGHT CHANGE BEHAVIOR. AND WE ARE NOW A GROUP UP IN MASSACHUSETTS WHO IS WORKING WITH YOUNG WOMEN WHO HAVE GOTTEN PREGNANT AT A EARLY AGE AND SHARING THEIR STORIES ABOUT THEIR LIVES, NOT JUST THE STORY ABOUT THEIR LIVES BEING VERY YOUNG PARENTS. BUT MOST OF THEM CAME FROM THE KIND OF BACKGROUND WHERE THERE WAS ABUSE. THERE WAS ALCOHOL AND DRUG ADDICTION IN THE HOME. VERY, VERY RADICAL BACK STORIES THAT MOVE THEM INTO THIS SITUATION. AND WHAT DOES IT MEAN TO SHARE THEIR STORIES AS WELL AS TO TELL THEIR STORIES? AS WELL AS FOR SOMEBODY TOLLS LISTEN? I'M GOING TO SWITCH TO ANOTHER TOPIC HERE. ANOTHER WAY THAT I HAVE BEEN WORKING WITH AND DISCOVERING HOW THERE MIGHT BE SOME DEEPER ROOTS THAT CAN ADDRESS THAT ELEPHANT. I HAVE BEEN WORKING NOW FOR ABOUT NINE YEARS WITH MEDITATIVE MOVEMENT AND WE PUT TOGETHER A PACKAGE THAT SAYS MEDITATIVE MOVEMENT SHOULD BE TREATED AS A CATEGORY OF EXERCISE. BECAUSE WE HAVE THINGS LIKE YOGA AND TAI CHI CHI. SO WHAT ABOUT THAT TAI CHI? IS THAT THE SAME AS TAI CHI EASY OR EASY TAI CHI IS THERE THEIR IS IT A WHOLE LOT OF PRACTICES OUT THERE THAT COULD BE CONSIDERED MEDITATIVE MOVEMENT. IF THEY INCLUDE A BODY MOVEMENT OR FOCUS ON THE BODY, SOMETHING THAT INCLUDES A CLEARING OF THE MIND AND MEDITATIVE STATE, ALONG WITH A FOCUS ON THE BREATH TO ACHIEVE DEEP STATE OF RELAXATION AND TRANQUILITY, THEN HAVE YOU MEDITATIVE MOVEMENT. AND WE HAVE A PUBLICATION THAT REALLY DESCRIBES HOW MANY OF THESE HAVE SIMILAR ROOTS AND IN OUR UNDERSTANDING OF HOW THESE WORK, KIND OF LIKE IN THE OLD DAYS WHEN THEY CAME UP WITH THE IDEA FOR AEROBIC EXERCISE SO WE DIDN'T HAVE TO TEST EACH ONE? IF YOU GOT SOME AEROBIC EXERCISE, IT WILL COUNT FOR YOUR CARDIAC HEALTH. Y WE ARE LOOKING AT HOW MANY DIFFERENT PRACTICES CAN WORK TOGETHER. SO WHAT IS IT THAT IT IS GOING ON WITH THESE PRACTICES THAT MIGHT MAKE A DIFFERENCE? I'LL SHARE BRIEFLY WHAT IS CHI GONG. HOW MANY KNOW THE WORD CHI GONG? IT'S SIMPLER THAN THE LONG CHOREOGRAPHED STEPS. YET MOST OF THE RESEARCH DONE IN THIS COUNTRY WITH TAI CHI HAS BEEN REDUCED DOWN TO VERY SIMPLE FORM. SO, TAI CHI EASY, TAI CHI CHI. WE ARE TAKING CHI GONG-LIKE MOVEMENTS, TAI CHI-LIKE MOVEMS AND REPEATING THEM AND IT'S EASIER FOR PEOPLE TO LEARN AND QUICKER TO SHARE. SO THE CHI GONG IS IT AN ANCIENT CHINESE PRACTICE INCLUDING THE MEDITATION AND THE BREATH AND ALSO HAS SOME SELF MASSAGE TECHNIQUES AND TAI CHI IS A TYPE OF CHI GONG USING A SERIES OF CHOREOGRAPHED MOVEMENTS. SO WE HAVE PARTNERED ON A LOT OF THINGS TOGETHER AND WE DID A SYSTEMATIC REVIEW OR A COMPREHENSIVE REVIEW. I WOULDN'T CALL IT SYSTEMATIC, OF ALL THE RANDOMIZED CONTROL TRIALS UP UNTIL 2009 AND PUBLISHED IN 2010, OF THE KINDS OF THINGS THAT WE SEE AS A RESULT OF PRACTICING THESE. AND WHAT I IS DONE IS LISTED OUT A NUMBER OF THINGS HE HAVE BEEN DONE SINCE THEN. AT THAT POINT, 67 RANDOMIZED CONTROL TRIALS AND NOW OVER 120. SO IT IS THE FIELD MOVING VERY FAST. AND SO WE SEE THAT TAI CHI AND CHI GONG, THESE PRACTICES TOGETHER, HOW SIGNIFICANTLY WITH SYMPTOMS INCLUDING PAIN AND FATIGUE AND MANY OTHER SYMPTOMS YOU CAN SEE IN THE LITERATURE, THESE ARE VERY COMMON OUTCOMES OF THESE PRACTICES. ALSO HELPING WITH INTRUSIVE THOUGHTS. CARDIOVASCULAR BENEFITS. JUST I CAN'T FIND A TAI CHI STUDY THAT DOESN'T SHOW THAT BLOOP IS REDUCED. BONE DENSITY. THERE IS A SURPRISING ONE. WHY IN THE WORLD WOULD THESE BE VERY SIMPLE, SLOW MOVEMENTS MAKE A DIFFERENCE WITH BONE DENSEILITY. THIS WILL IS A THEORY WHY THAT MIGHT BE WORKING BUT WE ARE NOT DOING RESISTANCE TRAINING HERE. SO THERE IS SOME POSITIVE SIGNIFICANTS ON BONE DENSEILITY AND THEN ALSO FINDING IT IS NOT CONSISTENT BUT WE HAVE BEEN DOING REVIEWS OF THE LIT TOWER TO SEE HOW TAI CHI OR QIGONG MAY MAKE A DIFFERENCE WITH WEIGHT LOSS. VERY SELDOM ARE THE STUDIES DONE WITH WEIGHT LOSS AS THE GOAL FOR THE STUDY. IT'S JUST LIKE, WELL WE CHECKED WEIGHT AS 5EU BY THE WAY. SO SOMETIMES THE STUDIES DON'T EVENLY HAVE PEOPLE WHO ARE OVER TWEET START WITH. YOU'RE NOT GOING TO LOSE A LOT OF WEIGHT IF YOU'RE NOT OVERWEIGHT. THOSE ARE THE THINGS WE ARE LOOKING AND THE FINDING IF THE STUDY HAS OVERWEIGHT PARTICIPANTS TO START WITH AND IF THE STUDY HAS SPECIFICALLY DESIGNED IT TO LOOK AT WEIGHT LOSS, WE DO SOMETIMES MORE OFTEN THAN NOT SEE A RERESULT IN THAT. SO, THE INTERESTING THING FOR ME ABOUT THIS COMPREHENSIVE REVIEW IS THAT IT COVERS AN AWFUL LOT OF SYMPTOMS T COVERS A LOT OF ISSUES. AND I START WONDERING THIS IS GOING TO START LOOKING TO PEOPLE LIKE WE ARE THINKING THIS IS SOME KIND OF SNAKE OIL. HOW CAN YOU GET ALL OF THESE DIFFERENT RESULTS AND IN FACT, IN OUR STUDY THAT WE DID WITH BREAST CANCER SURVIVORS, WE GOT THIS RESULT WITH FATIGUE AND ALSO GOT THE -- THIS WAS BY THE WAY RESULT. THAT'S WHY WE STARTED TO LOOK AT THE WEIGHT LOSS ISSUE. OUR CONTROL GROUP THAT DID THE SAME AMOUNT OF PHYSICAL MOVEMENT AND ACTIVITY, THEY GAINED WEIGHT WHERE OUR QIGONG GROUP LOST THE WEIGHT. SO WITH THAT, WE HAVE BEE GOWN PROPOSE ABOUT WHY AND HOW MEDITATIVE MOVEMENT MIGHT WORK ON WEIGHT AND IF YOU REMEMBER THAT FIRST SLIDE THEY SHARED WITH ALL OF THOSE DIFFERENT PIECES IT SOUNDS LIKE A MISHMASH OF EVERYTHING WHY HAVE BEEN TALKING ABOUT TODAY AND THEN SOME, THAT WE LOOKED AT HOW AND WHY MED TAILLIGHTIVE MOVEMENT MIGHT BE WORKING AND I WOULD POINT YOU TO THIS CENTRAL PIECE HERE WITH THE BLUE LETTERS. EMOTIONAL SELF-REGULATION. WE HAVE SEEN IN THE LITERATURE AND NOW I'M INVOLVED IN A MUCH LARGER 5-YEAR STUDY WITH BREAST CAPSER SURVIVORS AND FATIGUE BUT ALSO LOOKING AT WEIGHT AND LOOKING AT EMOTIONAL SELF-REGULATION. WHAT IS HAPPENING INTERNALLY THAT MIGHT MAKE THAT DIFFERENCE? HOW DOES PRACTICING THIS MAKE A CHANGE IN BODY AWARENESS? AND WHERE MIGHT WE BE ABLE TO REDUCE THE STRESS? SO WE DO HAVE THE BIOMARKERS, THE FIRST TWO LISTED UP HERE. CORTISOL AND SALIVARY MEASURES AND INFLAMMATORY CYTOKINES WERE TAKEN AND BLOOD MEASURES. THE REST WE ARE NOT DUELING. WE PROBABLY NEED TO APPLY FOR A SUPPLEMENT AND SEE IF WE CAN DO THAT. BECAUSE THE STUDY WAS DESIGNED AROUND FATIGUE THE FIRST TWO WERE MORE IMPORTANT. WE ARE SEEING THIS MIGHT BE A CRITICAL PIECE TO LOOK AT. THERE IS A POSSIBLY BENEATH THIS, I WANT TO SAY THIS IS NOT A SNAKE OIL SOLUTION BUT THAT THERE IS POSSIBLY SOMETHING THAT IS LIKE A LATENT VARIABLE UNDERLYING IT. AND THAT IS WHAT I HAVE BEEN QUESTIONING AND TRYING TO UNDERSTAND FOR A LONG TIME. AND WHERE I HAVE SETTLED IN ON, BECAUSE OF WORK THAT I DID, I MENTIONED EARLIER, I HAVE A SON WHO CAME TO US WITH ATTACHMENT DISORDER WHEN WE ADOPTED HIM. HAD FIBROMYALGIA BY THE TIME HE WAS 13. HE IS 20 NOW AND SOME OF THE THINGS THAT WE LEARNED TO HELP HIM WITH WERE MOSTLY ABOUT MANAGING SELF MANAGING HIS EMOTIONALLY REGULATING HIS OWN INTERNAL ENVIRONMENT AND WE DID IT THROUGH A BIOFEEDBACK PIECE OF EQUIPMENT THAT IS NOT CALLED BY A FEEDBACK BY THE MANUFACTURERS OF IT BUT THE SYSTEM THAT THEY TEACH REALLY IS LIKE A BIOFEEDBACK SYSTEM WHERE YOU HOOK UP, GET A PICTURE OF YOUR HEART RATE VARIABILITY RHYTHM, AND THEN MANAGE IT UNTIL IT GETS TO A PLACE THAT IS REPRESENTATIVE OF THE BALANCE BETWEEN THE SYMPATHETIC COMPARISON AND THE AUTONOMIC NERVOUS SYSTEM. SO I'M SURE YOU'RE FAMILIAR WITH THE CONCEPT OF HEART RATE VARIABILITY. IT HAS TO DO WITH THE INTERVALS AND IT SHOULD BE CHANGING ALL THE TIME. THAT A REALLY STRICT EQUAL HEART RATE IS NOT A GOOD THING AND THAT IF YOU LOOK AT HOW HEART RATE VARIES OVER TIME, IT COULD BE IN A CHAOTIC PATTERN OR IN THIS NICE GENTLE RHYTHMIC PATTERN WHERE IT INCREASES SOILY AND THEN DECREASES SLOWLY AND INCREASES AND DECREASES. ANYBODY KNOW WHAT ELSE THIS PARTICULAR PATTERN IS CALLED? RESPIRATORY SINUS ARRHYTHMIA. THAT'S INHALE AND THAT'S AN EXHALE. IF YOU DON'T HAVE A WHOLE LOT OF AUTONOMIC NERVOUS SYSTEM ACTIVITY, ALL OF THAT STUFF GOING BACK AND FORTH, IF YOU DON'T HAVE A LOT OF THAT GOING ON AND YOU'RE AT A VERY CENTERED PLACE, THEN YOUR HEART RHYTHM PATTERNS LIKE LOOK THIS. AND SO WHEN WE GET TO THAT CONVERSATION LATER ON ABOUT WHAT MIGHT BE A CENTRAL CORE MEASURE, I WOULD SUGGESTING THAT PERHAPS THESE EMOTIONS AND HEART RHYTHMS MIGHT BE SOMETHING TO LOOK AT. THERE IS HIGH CORRELATION BETWEEN THE CHAOTIC VERSION OF THESE RHYTHMS OF HEART RATE VARIABILITY AND ALSO INHIBITS BRAIN FUNCTION, AND THAT WHEN YOU GET INTO THIS RESPIRATORY SINUS ARRHYTHMIA, THESE PATTERNS, THIS PATTERN AS A COHERENT IS ASSOCIATED WITH POSITIVE EMOTIONS, OPTIMAL PERFORMANCE, OPTIMAL BRAIN FUNCTION, AND INTERESTINGLY, PEOPLE WHO ARE TRAINED TO USE THIS PATTERN OF COHERENCE, OVER TIME, ARE ABLE TO GET MUCH BETTER RATIOS OF CORTISOL AND DHEA. SO I WILL LEAVE WITH THAT. I HAD A COUPLE OF OTHER IDEAS TO LOOK AT HOW THESE TIED UP THINGS IN OUR STRESS MAY MAKE A DIFFERENCE BY ENTERING IN JUST ABOUT ANY WAY. YOU MIGHT BRING IN A HEART RATE VARY BITTY COHERENCE TRAINING. YOU MIGHT BRING IN PHYSICAL ACTIVITY. YOU MIGHT BRING IN STORIES THAT MAKE A DIFFERENCE. AND THAT THE MULTIPLE ENTRY POINTS EACH HAVE THE POTENTIAL FOR LEVERAGING SOMETHING TO BREAK UP THIS CONSTELLATION OF PATTERNS THAT SEEM TO OCCUR OVER AND OVER WHETHER IT IS CHILDHOOD STRESS THAT START TODAY OR LATER ADULT STRESS OR A COMBINATION OF BOTH. SO, SEE THROUGH THE FORREST. THIS IS WHERE WE LIKE TO GO IN THE FUTURE. ONCE OFF COURSE IT'S DIFFICULT TO RECORRECT THIS. BUT, LOOKING AT THE DIFFERENT ENTRY POINTS THAT MAY MAKE A DIFFERENCE TO REALLY REACH INTO A DEEPER LEVEL AND RESOLVING THAT AND LOOKING AT PERHAPS ASSESSMENTS THAT MAY HELP WITH TO DO A BETTER JOB OF NOT ONLY LEARNING ABOUT WHAT TO MEASURE THAT MIGHT BE CORE, BUT USING IT AS FEEDBACK. THANKS TO A COUPLE OF STORY TELLING PROJECTS THAT HAVE BEEN FUNDED ARE UP HERE AND NIH HAS BEEN VERY GOOD TO US AND THEN THE MOST RECENT ONE IS WORKING WITH MEDITATIVE MOVEMENT. >> [ OFF MIC ] >> AS A TEACHER AND PRACTITIONER OF NATIVE DANCE, I WANT TO PUT IT ON YOUR MAP AS WELL BECAUSE YOU MENTIONED A LOT OF THINGS BUT FORGOTTEN DANCES. THIS IS VERY IMPORTANT THING. >> DANCING. [ MULTIPLE SPEAKERS ] >> A COUPLE OF PEOPLE DO MINDFUL MOVEMENT DANCING. YES. >> BUT ALSO I REALLY THINK THIS BREAKTHROUGH FOR ME HERE IS THAT YOU COMBINED IT ALL. MEDITATIVE MOVEMENT INSTEAD OF STUDYING EVERY SPECIFIC MOW BALTY SEPARATELY. I THINK THIS IS AWESOME AND THANK YOU VERY MUCH FOR STARTING WITH THE ENERGY. >> THANK YOU. SORRY I TOOK A LITTLE EXTRA TIME. JUST A COMMENT. IN OUR WORK WITH BREAST CANCER SURVIVORS AND MEDITATIVE MOVEMENT, THE EXPERIENCE WE SEE SO OFTEN HAPPEN RIGHT IN THE FIRST FEW SESSIONS. THEY BEGIN TO SLOW DOWN AND BEGIN TO FEEL THAT THEY ARE BACK IN THEIR BODY. AND THE TEARS COME OR THE SHAKING COMES AND THEN THERE IS A STORY. THERE IS SOMETHING THAT CAME TO HYPED AND THEY SHARE IT. AND IT IS RELEASED AND THEN THEY CAN MOVE ON. AND WE WANT TO SEE WHAT ARE THOSE BIOMARKERS ASSOCIATED WITH THAT. >> I'M JUST CURES WITH THE STORY TELLING. HOW MUCH DO YOU THINK THE SEEK RELATE SAUCE BEHIND THAT IS ABOUT VULNERABILITIY AND ACCEPTANCE IN ONE'S VULNERABILITIY? THERE IS A LOT OF NEWS AROUND VULNERABILITY RECENTLY AND SO I WAS CURES YOUR THOUGHTS ON THAT. >> I DIDN'T USE THE WORD VULNERABILITY BUT I SO GET IT. THAT IS PART OF IT. IT'S THE SOFTENING INSIDE. THE BEING READY TO FEEL YOUR EMOTIONS. ACCEPTING YOUR EMOTIONS AND SHARING YOUR EMOTIONS. AND I DIDN'T TALK A LOT ABOUT THE SOCIAL IMPACT OF THAT IN MEDITATIVE MOVEMENT OR STORY TELLING BUT I THINK THEY ARE VERY POWERFUL. VULNERABILITY IS TIED UP IN THAT SOCIAL PIECE. THANK YOU. >> THANK YOU LINDA. THANK YOU. [ APPLAUSE ] WHILE WE HAD A LOT OF SHARING AND RETWEETING OF THIS MORNING'S PROCEEDINGS, WHAT WE DON'T HAVE ARE DIRECT MESSAGES OR QUESTIONS. SO, YOU HAVE LUNCH OFF. THERE IS A VERY NICE CAFETERIA ACROSS THE ATRIUM, PERHAPS THE BEST FOOD ON CAMPUS, DEFINITELY BETTER THAN THE ONE IN THE BUILDING 1 WHERE FRANCIS COLLINS GETS TO EAT. SO YOU CAN EAT THERE. YOU CAN EAT IN THE COURTYARD. YOU CAN COME BACK IN HERE. SO LONG AS -- DO AS YOU LIKE UNTIL 1:15 WHEN MICHAEL BALL BONY WILL OPEN US UP. WITH THE FIRST PRESENTATION. SO WE'LL COME BACK TO THE VIDEO CAST THEN AS WELL THANK YOU ALL VERY MUCH. BACK TO OUR THEME OF SELF AND OTHERS, ONE TOPIC THAT WE OFTEN TRY AND MEASURE IN OUR HEALTH RESEARCH IS RELIGIONS, SPIRITUALITY, THE CONNECTION TO A POWER HIGHER THAN OURSELVES. IT'S SOMETHING THAT WE'VE WORKED ON AS RESEARCHERS AND PROGRAM DIRECTORS FOR YEARS. AND I THINK ONE THING WE CAN AGREE ON IS THERE ARE BETTER WAYS TO MEASURE AND ACCOUNT FOR THAT. AND I CAN THINK NO ONE BETTER THAN TO HELP US DO SO THAN MICHAEL BALBONI. [ APPLAUSE ] >> ALL RIGHT, WELL, THANK YOU VERY MUCH. IT'S GREAT TO BE HERE. I THINK I NEED TO QUALIFY MYSELF, I THINK I CAN THINK OF MANY OR PEOPLE WHO WOULD BE BETTER THAN MYSELF. HE'S BUSY RIGHT NOW. ALSO QUALIFIED TO SAY I WORK WITHIN END OF LIFE CARE AND ADVANCED ILLNESS, PARTICULARLY WITH CANCER PATIENTS NOT IN CHRONIC ILLNESS OR IN SELF MANAGEMENT SO YOU JUST HAVE TO TAKE EVERYTHING I SAY WITH A BRAIN OF SALT. I'M GOING TO TRY TO QUICKLY COVER FOUR OUT OF FIVE QUESTIONS. IF THERE'S TIME OR IF THERE'S A QUESTION AT THE END WE CAN GO INTO THE FIFTH QUESTION. BUT BRIEFLY WHAT IS RELIGION AND SPIRITUALITY. IS IT IMPORTANT WITHIN SERIOUS ILLNESS, HOW SHOULD WE -- OR MAY WE MEASURE RELIGION AND SPIRITUALITY AND A LITTLE BIT SOME OF THOUGHTS ABOUT RELIGION, SPIRITUALITY AND SELF MANAGEMENT AND SHOULD HEALTH SCIENTISTS MEASURE RELIGION AND SPIRITUALITY WE CAN BRIEFLY TOUCH ON. FIRST LET'S GO INTO DEFINING WHAT IS RELIGION AND/OR SPIRITUALITY. SOCIOLOGISTS HAVE HAVE RECOGNIZED THAT RELIGION IS A PERVASIVE AND POWERFUL SOCIAL FORCE. AROUND THE WORLD. BUT IT HAS BEEN VERY DIFFICULT TO DEFINE. IT'S DIFFICULTY HAS BEEN AMONG SOCIOLOGISTS, AMONG RELIGIOUS SCHOLARS THAT'S NOT ONLY FOR THE CONCEPT OF SPIRITUALITY WHICH IS A NEWER CONCEPT, THAT GOES FOR THE CONCEPT OF RELIGION WHICH AMONG RELIGIOUS SCHOLARS THERE'S BEEN NO CONSENSUS OVER THE PAST HUPPED YEARS OF WHAT RELIGION EXACTLY IS. THERE IS TYPICALLY TWO MAIN APPROACHES TO DEFINING SPECIFICALLY RELIGION, SUBSTANTIVE AND FUNCTIONAL DEFINITIONS. SUBSTANTIVE DEFINITIONS TYPICALLY ARE -- HINGE AROUND A PARTICULAR OBJECT SUCH AS GOD OR THE SUPERNATURAL. SO IF YOU WANT KNOW WHAT RELIGION IS IT WILL HAVE SUBSTANTIVE COMPONENT WHERE AS FUNCTIONAL DEFINITIONS PARTICULARLY FOLLOWING DERCHIM AS RECOGNIZED THAT RELIGION HAS SOME SORT OF FUNCTION OR CAUSES SOMETHING SUCH AS WITH THE THESIS WITH SOCIAL COHESION. THE REGION THAT I RELIGION AND SPIRITUALITY HAVE BEEN VERY DIFFICULT TO DEFINE IS I THINK, BE HELPFULLY ILLUMINATED THROUGH THE LANGUAGE OF PROTOTYPICAL TERMINOLOGY OR WHAT SOME CALL FAMILY RESEMBLANCE. SO CONSIDER CONCEPTS OF THOSE VEHICLES OR FRUIT OR A BIRD. NOW THESE ARE CONCEPTS THAT AT THEIR CORE WE ALL GENERALLY KNOW WHAT THEY ARE SO IF I PUT UP A PICTURE OF A BUS OR A CAR, PROBABLY UNANIMOUSLY SAY, YES, THEE ARE VEHICLES. IF I PUT UP A SURFBOARD OR A BLIMP, PROBABLY MUCH DISAGREEMENT ON WHETHER THESE SORTS OF OBJECTS ARE VEHICLES OR NOT. THAT'S THE NATURE OF A PROTOTYPICAL TERMINOLOGY, WE KNOW WHAT A CERTAIN THING IS AND YET AT THE BOUNDARIES THEY ARE VERY FUZZY. THIS IS PROBABLY THE SAME WITHIN RELIGION AND SPIRITUALITY IF WE TALKED ABOUT CHRISTIANITY, JUDAISM, ISLAM, I WOULD IMAGINE WE'D ALMOST ALL AGREE YES, THESE ARE CERTAINLY RELIGIONS. IF WE TALKED A BOUT BUDDHISM OR CONFUSIONISM, THERE HAS BEEN MUCH MORE DISAGREEMENT ON WHETHER THESE ARE RELIGIONS OR NOT. AND SO, THE VERY IDEA OF THE TERM IS FUZZY IN AND OF ITSELF WHICH IS WHY I THINK IT'S BEEN DIFFICULT TO DEFINE. ANOTHER CLOSELY RELATED ISSUE ESPECIALLY WITHIN THE HEALTH LITERATURE HAS BEEN RELIGION AND SPIRITUALITY WHERE SOME WANT TO SEE A STRONG DISTINCTION BETWEEN RELIGIOUS CONCEPTS AND SPIRITUAL CONCEPTS. I WOULD ARGUE ALONG WITH SOCIOLOGISTS AND NANCY AMMERMAN AMONG MANY OTHER SOCIOLOGIST PREFER AND TAKE THIS POSITION SHE ARGUES IN A JOURNAL ARTICLE, "SPIRITUAL BUT NOT RELIGIOUS" MOST IMPERICAL EVIDENCE AT LEAST IN THE NIGHT STATES PERHAPS ALSO IN SOME OTHER COUNTRIES THE GENERAL WAY MOST PEOPLE CONCEIVE OF RELIGION AND SPIRITUALITY IS THAT THEY DEEPLY OVERLAP WITH ONE ANOTHER. MOST USE THE CONCEP-- NOT IN MUTUALLY EXCLUSIVE WAYS BUT IN SOME FORM OF PARTNERSHIP. THIS IS WHERE THE IMPERICAL EVIDENCE LIES AS SHE ARGUES AND SHE ALSO INDICATES THAT THOSE WHO PREFER TO MAKE AN ARGUMENT THAT SPIRITUALITY IS DISTINCT FROM RELIGION, SHE ARGUES ARE REALLY DOING SO OUT OF MORAL AND EVEN TAKING A POLITICAL POSITION, TRYING TO DIFFERENTIATE THEMSELVES FROM RELIGION FOR SOME REASON OR OTHER THERE ARE THOSE WHO DON'T LIKE ORGANIZED RELIGIONS THEY WANT TO SAY, THIS IS SPIRITUAL BUT NOT RELIGIOUS. AND SO IT'S BETTER THAN, THERE ARE OTHERS WHO ARE DEEPLY RELIGIOUS CONSERVATIVE, FUNDAMENTALISTS WHO WOULD SAY THEY'RE SPIRITUAL BUT NOT RELIGIOUS AS WELL THEY WANT TO DIFFERENTIATE THEMSELVES FROM THOSE WHO ARE PRACTICING RELIGION OUT OF SOME RIGHT RATHER THAN FROM THE HEART. SO, PEOPLE WOULD TEND TO USE THIS TO DIFFERENTIATE THEMSELVES FOR DISTINCT REASONS. BUT THE IMPERICAL EVIDENCE IS VAST MAJORITY DO NOT THINK OF RELIGION OR SPIRITUALITY AS MUTUALLY EXCLUSIVE TERMS THERE FOR. SO, WHAT IS RELIGION? I WOULD -- I LIKE THE IDEA OF THINKING OF RELIMB ON AS AGAIN, THERE'S A TERM, FAMILY RESEMBLANCES WE'LL SEE FEATURE GENERALLY CLUE US IN THAT THIS IS A RELIGION OR NOT. I WOULD DEFER TO THE RELIGIOUS HISTORIAN MARTIN MARTY FROM THE UNIVERSITY OF CHICAGO, PROBABLY THE PREEMINENT HISTORIAN OF RELIGION WHO NOTED FIVE FEATURE CHARACTERISTICS OF RELIGION. THERE'S A FOCUS ON THE ULTIMATE CONCERN, ROLES, RELIANCE ON RIGHT AND CEREMONY, BEHAVIORAL AND ETHICAL OBLIGATIONS ARE TYPICALLY INCLUDED. THERE WILL BE SOME LEVEL OR PRESENCE AND ROLE FOR COMMUNITY. I WOULD JUST NOTE THAT THE FIRST ONE ULTIMATE CONCERN, DIFFERENT PEOPLE WILL USUALLY USE DIFFERENT TERMS AND AT LEAST IN MY MIND THERE IS SLIGHTLY DIFFERENT EMPHASIS OR SLIGHTLY DIFFERENT REASONS BUT THE IDEA OF ULTIMATE CONCERN, PREFERS THE TERM SACRED IN IDENTIFYING WHAT RELIGION AND SPIRITUALITY ARE REFERRING TO, OTHERS WANT TO USE THE TERM MEANING OR PURPOSE OR CONNECTEDNESS. I WOULD DASH THIS IS NOT COMMON BUT I PREFER THE IDEA OF THE CHIEF AFFECTION. IT'S NOT SO MUCH ABOUT THE HEAD IT'S MORE ABOUT THE HEART AND WHAT SOMEONE LOVES. CHIEFLY LOVES, THAT'S HOW WE BEGIN TO IDENTIFY WHAT RELIGION AND SPIRITUALITY ARE. THAT'S JUST VERY BRIEFLY A CURSORY DESCRIPTION OF THE DEFINING RELIGION AND SPIRITUALITY. -- I THINK THERE IS PROBABLY MANY ANALOGIES. THE DATA THAT WE HAVE, MORE DATA WE HAVE ADVANCED ILLNESS WHICH PROBABLY BE APPLICABLE WITHIN CHRONIC ILLNESS. MOST STUDIES HAVE FOUND THAT TWO-THIRDS TO THREE-QUARTERS OF PATIENTS IN THE UNITED STATES SAY THAT RELIGION AND SPTY IS IMPORTANT TO THEM WITHIN THEIR ILLNESS. TENDS TO BE MORE IMPORTANT AS -- TO THE DEGREE THAT THE ILLNESS BECOMES SEVERE. PEOPLE TURN TO SPIRITUALITY AND RELIGION WHEN THEY'RE FACING SERIOUS ILLNESSES VERSUS A BROKEN FINGER. RELIGION AND SPIRITUALITY INCREASES AS PEOPLE AGE. VERY BRIEFLY THINK OF ONE STUDY THAT HELPED LEAD IN BOSTON AND FOR BOSTON HOSPITAL, THIS IS SURVEY OF COMPANY-SECTIONAL STUDY OF PATIENTS WITH ADVANCED CANCER. WE CONSECUTIVELY RECRUITED THEM BOOT STUDY. FOR MORE ABOUT THINKING ABOUT THE RESEARCH AND CONCEPTUALIZATION OF RELIGION AND SPIRITUALITY FOR ALL THE PARTICIPANTS WE DEFINED WHAT WE MEANT BY RELIMB ON AND WE ALSO DEFINED WHAT WE MEANT BY SPIRITUALITY. I DON'T NECESSARILY STAND BY THESE DEFINITIONS TODAY AS WE DEVELOP THESE IN 2005. BUT IN LATER SLIDE I'LL ARGUE THAT THIS CONTINUES AN IMPORTANT THING IF YOU ASK ABOUT RELIGION AND SPIRITUALITY YOU NEED AS RESEARCHERS TO DEFINE IT. IN THIS PARTICULAR SAMPLE, MEDIAN AGE WAS JUST UNDER 06 YEARS OLD. VAST MAJORITY OF BOSTON PATIENTS ARE WHITE. LIKE MASSACHUSETTS 47% ARE CATHOLIC. OVER 70% ALMOST 80% ARE EITHER CHRISTIAN OF ONE TRADITION OR ANOTHER. 43% INDICATED THAT THEY WERE MODERATELY TO VERY RELIGIOUS. AND 70% SAID THEY WERE MODERATELY TO VERY SPIRITUAL. NOW I'LL REMIND THAT YOU BOSTON IS NOT THE BUCKLE OF THE BIBLE BELT. SO THIS IS WHAT WE'RE SEEING IN BOSTON AS OF 2007. I THINK WE'LL SEE HIGHER NUMBERS IN MOST OTHER PARTS OF THE COUNTRY EXCLUSIVE OF CERTAIN CITIES SUCH AS NEW YORK CITY AND SAN FRANCISCO. AND A FEW OTHER PLACES. HAS RELIGION AND SPIRITUALITY BEEN IMPORTANT TO YOUR EXPERIENCE EVER ILLNESS. 78% OF OUR SAMPLE INDICATED YES. WE THEN ASKED THEM IN OPEN-ENDED WAY, HOW IS RELIGION AND SPIRITUALITY BEEN IMPORTANT TO YOUR EXPERIENCE WITH YOUR ILLNESS WE TAPE RECORDED THESE RESPONSES THEN ANALYZED THEM WITH -- THROUGH QUALITATIVE MEANS AND IDENTIFIED FIVE MAIN SCREENS IN WHICH WE IDENTIFIED RELIGION AND SPIRITUALITY WAS IMPORTANT TO THEIR EXPERIENCE OF ILLNESS. LARGEST SCENE WAS COPING, PATIENTS TALKED HOW IT PROVIDED MEANS FOR PERSEVERANCE. EVEN AMONG THOSE FEW PATIENTS WHO HAD METASTATIC CANCER MANY OF THEM CONTINUED TO BELIEVE IN A PROMISE FOR CURE WHICH GAVE THEM HOPE. PATIENTS TALKED ABOUT SPIRITUAL PRACTICES ESPECIALLY PRAYER, SOME TALKED ABOUT RELIGIOUS SERVICE ATTENDANCE AS PATIENTS GET OLDER AND SICKER RELIGIOUS SERVICES ATTENDANCE DROPS BECAUSE THEY'RE UNABLE TO GO. SO INDIVIDUAL PERSONAL SPIRITUAL PRACTICES INCREASED WITH AN ADVANCED ILLNESS. PATIENTS TALKED ABOUT RELIGIOUS BELIEVES THAT WERE PARTICULARLY IMPORTANT TO THEM AND HELPFUL TO THEM. THEY MENTIONED AGAIN THIS IS JUST IN RESPONSE TO THIS OPEN-ENDED QUESTION, HOW HAS IT BEEN IMPORTANT THEY TALKED ABOUT BELIEF IN GOD'S WILL THAT PROVIDING A WAY OF UNDERSTANDING AND GIVING MEANING TO WHY THEY HAVE CANCER AS WELL AS HOPING FOR AFTER LIFE. ANY PATIENTS TALKED ABOUT THEIR CANCER AS BEING A CATALYST FOR THEIR OWN TRANSFORMATION IN THEIR LIVES, SOME TALKED ABOUT CANCER BEING THE BEST THING THAT EVER HAPPENED TO THEM BECAUSE R BECAUSE IT PROVIDED A WAY IN WHICH THEY NOW SAW WHAT WAS REALLY IMPORTANT IN LIFE. AND WHERE AS BEFORE THEY WERE LIVING IN A DREAM WORLD AS ONE PERSON SAID. AND SOME TALKED ABOUT IMPORTANCE OF COMMUNITY. THAT GIVES YOU A SENSE OF SOME OF THE DIMENSIONS OR DOMAINS WITHIN RELIGION AND SPIRITUALITY AT LEAST AS APPEARING AS PHENOMENA WITHIN THE UNITED STATES PARTICULARLY WITHIN BOSTON POPULATION. THERE WE GO. WE ALSO ASKED THESE PATIENTS, WE GAVE THEM A CHECKLIST, YES OR NO, WHETHER THESE HAVE BEEN SPIRITUAL OR RELIGIOUS ISSUE FOR THEM. HERE WE FOUND THAT 1% SAID THEY WERE QUESTIONING GOD'S LOVE DURING THEIR EXPERIENCE OF CANCER. ABOUT 10% BELIEVE THAT THE DEVIL HAD CAUSED THEIR CANCER WHICH INTERESTINGLY WAS THE SOLE RELIGIOUS SPIRITUAL CONCERN THAT WAS ASSOCIATED WITH A POSITIVE PSYCHOLOGICAL QUALITY OF LIFE WHICH WE UNDERSTOOD PROBABLY BE IMPLYING THAT IT GAVE THEM A WAY OF UNDERSTANDING WHY THEY HAVE CANCER, WHERE BLAME CAN BE GIVEN FOR THEIR CANCER AND IT GIVES THEM A SENSE OF MEANING. JUST UNDER HALF SAID THEY WERE SEEKING FORGIVENESS OF ONE SELF OR OTHERS. FINALLY EMPHASIZE ONE OUT OF FIVE BOSTON CANCER PATIENTS BELIEVED THAT THEIR CANCER WAS SOMEHOW PUNISHMENT FROM GOD. WHICH I THINK IS REALLY INTERESTING. IT IS IMPORTANT, IT IS CLEARLY PLAYING A SIGNIFICANT ROLE WITH AN ADVANCING ILLNESS. SOME HAS ANALOGUES ROLE WITHIN MANY OTHER CHRONIC ILLNESSES AS I LISTED IN SOME OF THE EARLIER TALKS. I CERTAINLY HAT THOUGHTS IDEAS HOW RELIGION AND SPIRITUALITY MIGHT BE PLAYING A ROLE WITHIN THESE DIFFERENT PATIENT POPULATIONS. HOW DO WE MEASURE RELIGION AND D A LITTLE BOOK THERE, I SPIRITUALITY AND I WAS PASSING DON'T KNOW IF YOU WANT TO PASS AROUND THE TABLE, IN THE CLINICAL CONTEXT IF YOU'RE DEALING DIRECTLY WITH PATIENTS, YOU WANT TO HAVE A FUZZY, AMBIGUOUS DEFINITION FOR RELIGION AND SPIRIT. YOU WANT TO ASK OPEN-ENDED QUESTIONS AS YOU'RE ENGAGING AS A PATIENT. BUT WHEN YOU'RE DOING RESEARCH, IT'S CRITICAL TO HAVE VERY CLEAR DEFINITIONS FOR RELIGION AND SPIRITUALITY. FAILURE TO DEFINE RELIGION AND SPIRITUALITY TO THE PATIENT POPULATION THAT YOU'RE SERVING WILL INEVITABLY COMPROMISE THE MEANING OF THE RESULTS BECAUSE NO ONE REALLY KNOWS WHAT THEY MEANT BY RELIMB ON OR BY SPIRITUALITY. SO IT BECOMES INCUMBENT TO PROVIDE A DEFINITION, EVEN IF IT'S A DEFINITION THAT YOU'RE NOT EXACTLY SURE IS TRUE, AT LEAST WE HAVE SOME SENSE OF WHAT IS ACTUALLY BEING MEASURED. THERE ARE SOME SPIRITUAL, RELIGIOUS MEASURES THAT ARE OUT THERE THAT TEND TO BLUR INTO EX I TEN SHALL AND OTHER -- EXISTENTIAL AND OTHER QUALITY OF LIFE DIMENSION SO THEY'RE MEASURING SPIRITUALITY BUT ALSO AT THE SAME TIME THEY END UP MEASURING SOME DIMENSIONS OF MENTAL HEALTH AND OTHER QUALITY OF LIFE. LOOKING AT RELIGION AND SPIRITUALITY AS PREDICTOR, CERTAIN OUTCOMES BECOMES TAUTOLOGICAL. IT BECOMES IMPORTANT TO DIFFERENTIATE THE I A GOOD EXAMPLE, I DISCOURAGE ANYONE TO USE THIS PARTICULAR MEASURE BECAUSE IT REALLY, OTHER RESEARCHERS ARE REALLY SAYING THE SAME THING AT THIS POINT THAT THESE TERN MEASURES THAT ARE OUT THERE THAT ARE VALIDATED ARE REALLY BLURRING DEFINITIONAL LINES. AS WE THINK OF CRITICAL DIRECTIONS IN THE STUDY OF RELIGION AND SPIRITUALITY, AGAIN IT'S A YOUNG FIELD. THERE'S IMPORTANT TO GO FROM DESCRIPTION TOWARDS INTERVENTION. I SUPPOSE NOD REALLY NECESSARY TO SAY THAT TO THIS GROUP BUT I THINK IT'S IMPORTANT FOR RESEARCHERS OF RELIGION AND SPIRITUALITY REALLY TO REMEMBER THAT THIS IS THE GOAL, THERE'S NOT MUCH SENSE IN PURELY DESCRIBING HOW DIFFERENT PHENOMENA RELATES TO ONE ANOTHER. I DON'T THINK THAT'S ALL THAT USEFUL. WE NEED TO BE ASKING SPECIFIC RELIGIOSE AND SPIRITUAL QUESTIONS WITH ALWAYS HAVING THE EYE ON WHAT IS AN INTERVENTION GOING TO LOOK LIKE IF WE HAVE THIS PARTICULAR INFORMATION. MEASURING QUALITY AND MENTAL HEALTH OUTCOMES, MEDICAL DECISION MAKING. MEDICAL UTILIZATION, COSTS AND HAVING ENOUGH INFORMATION ABOUT POTENTIAL FACTORS IN ORDER TO FACTOR THOSE IN TO ONE'S STUDY. THE BEST PLACE TO BEGIN IS THE BOOKLET I'M PASSING AROUND HAS BEEN CREATED BY MEASURES, CREATED BY LEADING RESEARCHERS IN 199 MEASURING 12 DIFFERENT DOMAINS, IS WELL-VALIDATED. IT WAS VALIDATED IN THE GENERAL SOCIAL SURVEY IN 1988 -- OR 1998. IT REMAINS PROBABLY BEST PLACE TO START IF YOU'RE GOING TO THINK ABOUT MEASURING RELIGION AND SPIRITUALITY. AT THE END OF THE BOOK YOU CAN DOWNLOAD AS PDF ONLINE THERE'S 38 QUESTIONS BRINGING TOGETHER ALL OF THE DIFFERENT DOMAINS. IT'S CRITICAL THAT WE MOVE FROM GENERIC QUESTIONS OF RELIGION AND SPIRITUALITY SUCH AS THESE TWO FROM THE MMRS WHAT EXTENT YOU CONSIDER YOURSELF RELIGIOUS OR SPIRITUAL. MOVE TOWARDS MORE PARTICULAR QUESTIONS AND I WANT TO BEGIN TO ILLUSTRATE THIS BY TURNING TO THE COPING WITH CANCER STUDY LED BY DR. HOLLY FERGUSON NOW FORMERLY AT HARVARD NOW AT CORNELL THIS IS NCI FUNDED STUDY OF ADVANCING INCURABLE CANCER PATIENTS AND PURPOSE WAS TO EXAMINE SPECIFICALLY PSYCHOLOGICAL AND SOCIAL FACTORS WITHIN ADVANCED ILLNESS WITH SPIRITUALITY BEING SECONDARY AIM. AT THE BASELINE MEASURE PATIENTS ARE ASKED TO WHAT EX STENT YOUR RELIGION AND SPIRITUALITY NEEDS BEING SUPPORTED. THERE WERE FIVE RESPONSE OPTIONS IN OUR ANALYSIS RESAID, NOT AT ALL TO MODERN EXTENT IT WAS LOW, RELIGIOUS COMMUNITY SPIRITUAL SUPPORT THEN TO LARGER EXTENT COMPLETELY WAS HIGH SPIRITUAL SUPPORT. THIS IS OUR PREDICTOR. THE OUTCOMES IN QUESTION WERE RECEIPT OF HOSPICE CARE IN THE LAST SEVEN DAYS OF LIFE. RECEIVE OF ANY AGGRESSIVE END OF LIFE MEASURES INCLUDING GOING INTO THE ICU, BEING RESUSCITATED, VENTILATED WITHIN LAST SEVEN DAYS OF LIFE BEFORE DEATH AS WELL AS DYING IN THE ICU THESE ARE ALL INFORMATION EXTRACTED POSTMORTEM. PATIENTS WERE JUST UNDER 60 YEARS OF AGE, 37% WERE MINORITY. PERFORMANCE STATUS WAS 63 INDICATING THEY WERE PRETTY SICK. 68% AGAIN THIS IS NEW ENGLAND BEING SOME OF THE MAIN SITES FOR THE STUDY. 68% SAID RELIGION WAS VERY IMPORTANT TO THEM. AND 43% RESPONDED BASELINE QUESTION INDICATING THAT THEIR RELIGIOUS OR SPIRITUAL NEEDS WERE LARGELY OR COMPLETELY SUPPORTED BY THEIR RELIGIOUS COMMUNITIES. IN ANALYSIS WE ADJUSTED FOR VARIOUS CONFOUNDING INCLUDING ALL THE BASIC DEMOGRAPHICS, RACE, WHETHER THE PATIENT HAD RECEIVED AN END OF LIFE DISCUSSION, WHETHER THEY WERE IN NORTHERN OR SOUTHERN RECRUITMENT SITE. THE LEVEL OF TRUST WITH THE ONCOLOGY PHYSICIAN AS WELL AS THE PATIENT'S OWN RELIGIOUS FACTORS. AND HERE IS THE RAW ANALYSIS, IT WAS VERY SURPRISING THESE RESULTS ARE PUBLISHED IN 2013JAMA INTERNAL MEDICINE WE FOUND THAT PATIENTS WHO ARE WELL SUPPORTED BY THEIR RELIGIOUS COMMUNITIES WERE LESS LIKELY TO RECEIVE HOSPICE, THAT'S THE BLUE BAR. AND AMONG SPECIFIC PATIENT POPULATIONS, FOR EXAMPLE, RACIAL OR ETHNIC MINORITY PATIENTS WHO SAID THEY WERE HIGHLY SUPPORTED BY THEIR RELIGIOUS COMMUNITIES THEY WERE EVEN MORE UNLIKELY TO RECEIVE HOSPICE. SIMILAR FINDINGS REGARDING RECEIPT OF AGGRESSIVE CARE IN THE FINAL SEVEN DAYS THOSE WHO ARE WELL SUPPORT BY RELIGIOUS COMMUNITIES ARE MORE LIKELY TO RECEIVE AGGRESE CARE IN THE LAST SEVEN DAYS OF LIFE. AND THOSE WHO WERE WELL SUPPORTED BY THEIR RELIGIOUS COMMUNITIES WERE MUCH MORE LIKELY TO DIE IN THE ICU VERSUS THOSE WHO SAID THAT THEY WERE NOT WELL SUPPORTED BY THEIR RELIGIOUS COMMUNITIES. ADJUSTED ODDS RATIO, YOU CAN SEE THAT ABOUT PATIENTS WHO ARE WELL SUPPORTED BY THEIR RELIGIOUS COMMUNITIES WERE ABOUT TWOND HALF TIMES LESS LIKELY TO GO INTO HOSPICE, TWO AND A HALF TIMES MORE ODDS OF RECEIVING AGGRESSIVE CARE. I FIND THIS VERY INTERESTING, THERE WERE ALMOST SIX TIMES THE ODDS TO DIE IN THE ICU VERSUS PATIENTS WHO WERE NOT WELL SUPPORTED BY THEIR RELIGIOUS COMMUNITY. THIS IS COST ANALYSIS THAT WE'VE NEVER PUBLISHED ON YOU CAN SEE THAT THE SIGNIFICANT DIFFERENCES BETWEEN THOSE WHO WERE WELL SUPPORTED BY THEIR RELIGIOUS COMMUNITIES AND THOSE WHO WERE NOT. THOSE WHO ARE WELL SUPPORTED BY RELIGIOUS COMMUNITIES THINK PARTICULAR STUDY RECEIVE LESS HOSPICE, MORE AGGRESSIVE CARE, MORE ICU DEATHS AND THEY COST MORE. LIMITATIONS TO THIS PARTICULAR STUDY PERSPECTIVE BUT NOT RANDOMIZED STUDY THERE MIGHT BE POTENTIAL THINGS THAT WE'RE NOT AWARE OF. THIS IS A U.S. STUDY, IT'S A U.S. PHENOMENON AND IT'S TAKE CAN PLACE ALMOST ENTIRE PATIENT POPULATION AS WAS CHRISTIAN. WE DON'T REALLY KNOW WITH IS MEDIATING RELIGIOUS COMMUNITY SPIRITUAL SUPPORT. IN ANSWERING THIS LAST QUESTION, WE HYPOTHESIZED THAT THERE ARE POTENTIALLY FOUR DIFFERENT THEOLOGICAL DOMAINS THAT MAYBE DRIVING RELIGIOUS COMMUNITIES SPIRITUAL SUPPORT TO RECEIVE MORE AGGRESSIVE CARE BE LESS LIKELY TO GO TO THE ICU. I'M GOING TO TAKE YOU THROUGH THESE IN THIS PARTICULAR STUDY THAT WE HAVEN'T PUBLISHED ON BUT WE SELECTED RELIGIOUS CLERGY LEADERS FROM AROUND THE UNITED STATES, RADOMLY SELECTED THEM FROM 368,000 HOUSES OF WORSHIP IN THE U.S., IN THIS RESULT I'M GOING TO SHOW YOU VERY BRIEFLY WE HAVE HAD 60% RESPONSE RATE AMONG CLERGY. JUST OVER A THOUSAND RESPONDING. WE ASKED CLERGY TO RESPOND TO FOUR DIFFERENT SCENARIOS REGARDING A PATIENT WHO MAKES THE FOLLOWING STATEMENT TO THEM. WE'VE STATED THAT THIS PATIENT HAS DOCTORS HAVE SAID THEY'RE EXTREMELY LIKELY TO DIE WITHIN THE NEXT SIX MONTHS. TO WHAT DEGREE DO YOU AGREE WITH THIS STATEMENT MADE BY THE PATIENT. SO THE PATIENT SAYS SNACKS BECAUSE OF MY FAITH, I DON'T NEED TO THINK ABOUT FUTURE MEDICAL DECISIONS, SUCH AS HAVING A DO NOT RESUSCITATE ORDER OR USE OF BREATHING MACHINES." AND 28% OF CLERGY TO SOME DEGREE INDICATED SYMPATHY WITH THIS QUESTION WITH MINORITIES BEING MORE LIKELY TO ENDORSE THAT VERSUS WHITE CLERGY. G A DO NOT RESUSCITATE ORDER IS IMMORAL, 11% OF CLERGY ENDORSED THIS. I ACCEPT EVERY MEDICAL TREATMENT BOUGHT MY FAITH SAYS TO DO EVERYTHING I CAN TO STAY ALIVE, THIS IS A QUESTION WE'RE TRYING LIFE HOW THAT MIGHT BE IMPACTING MEDICAL DECISION. HERE YOU HAVE A MAJORITY OF CLERGY ENDORSING THIS PERSPECTIVE WITH MINORITIES BEING -- MINORITY CLERGY BEING MORE LIKELY THAN WHITE CLERGY. I WOULD BE GIVING UP ON MY FAITH IF I STOPPED CANCER TREATMENT. THIS IS A MORE -- HARDENED POSITION, LOT LESS CLERGY ENDORSED IT. BUT STILL A FEW. THEN I BELIEVE THAT GOD WILL CURE ME OF THIS CANCER. HERE YOU SEE THAT THE VAST MAJORITY OF CLERGY ARE SIGNIFICANTLY -- SEE THAT THIS BEING SOMETHING THAT THEY AGREE WITH. W EVEN CHANGED THIS QUESTI WE ORIGINALLY HAD IT, I BELIEVE THAT GOD MAY CURE ME. WE FOUND THAT EVERY CLERGY MEMBER WAS WILLING TO AGREE WITH THAT. WE TRY TO MAKE IT HARDER POSITION TO TAKE, THAT GOD WILL CURE ME AND WE STILL HAD CLERGY TO SOME DEGREE RECEIVING THIS. I MUST ENDURE PAINFUL MEDICAL PROCEDURES. ABOUT 27% CLERGY ENDORSED THESE. POINT HERE IS I'M GIVING YOU AN EXAMPLE OF THEOLOGICAL BELIEFS, PARTICULARLY MOVING FROM GENERAL RELIGION AND SPIRITUALITY QUESTIONS TO VERY PARTICULAR RELIGION AND SPIRITUALITY QUESTIONS. BECAUSE THIS IS VERY THE MONEY IS. WHERE WE CAN BEGIN TO ENGAGE IN POTENTIALLY INTERVENE WITH, FOR EXAMPLE, WITH CLERGY AND POTENTIALLY WITH PATIENTS REGARDING WHAT IS BELIEVED AND HOW THEIR BELIEFS ARE BEING APPLIED TO MEDICAL DECISIONS AND MEDICAL UTILIZATION AT THE END OF LIFE. THE BIG TAKE AWAYS HERE ARE, GOING TOWARD PARTICULARITY IN MEASURING RELIGION AND SPIRITUALITY AND ENSURING THAT YOU PARTICIPATE ACCOUNTING FACTORS, LOOKING FOR MEDICAL OUTCOME, THEOLOGICAL BELIEF AMONG CLERGY ARE CORRELATE WITH END OF LIFE OUTCOMES. I'LL SKIP OVER THAT AT THIS POINT AS WELL AS BEING ABLE TO BUILD TOWARDS ACHIEVABLE INTERVENTION. JUST VERY BRIEFLY ON SELF MANAGEMENT. THERE'S BEEN -- THERE ISN'T A LOT OF WORK THAT I'VE BEEN ABLE TO SEE, HARVEY HAS DONE A QUALITATIVE STUDY ON RELIGION AND SPIRITUALITY AND SELF MANAGEMENT AND SHE PUBLISHED THREE STUDIES IN THE LATE 2007 AND 2009. THESE ARE QUALITATIVE STUDIES. PROBABLY BEST THING HAS BEEN DONE BY HAROLD KOENIG AT DUKE. A PROCEED 13:00TIVE STUDY OF DEPRESSED OLDER PATIENTS WITH PULMONARY DISEASE THEY FOUND THAT PATIENTS WHO WERE DEEPLY INVOLVED IN RELIGION AND SPIRITUALITY PRACTICES SUCH AS GOING TO RELIGIOUS COMMUNITIES SERVICES, PRAYING, READING SCRIPTURE, WERE SIGNIFICANTLY MORE LIKELY TO RECOVER FROM DEPRESSION QUICKER, MORE QUICKLY THAN NONRELIGIOUS PATIENTS. THERE'S BEEN A LITTLE BIT OF OTHER -- SOME OTHER WORK THAT SEEMS RELEVANT. IF I CAN JUST BEGIN TO PLAY AROUND WITH SOME IDEAS, THESE ARE JUST MY OWN HYPOTHESES, MY WIFE AND I WERE SITTING AROUND A LAKE IN MAINE A WEEK AND A HALF AGO AND WE WERE BRAINSTORMING, HOW WOULD RELIGION AND SPIRITUALITY POTENTIALLY BE INFLUENCING ISSUES OF SELF MANAGEMENT. WE WOULD PREDICT THAT POTENTIALLY PLAY A ROLE IN EITHER, CALL PASSIVE OR ACTIVE ILLNESS MANAGEMENT. ALREADY THAT RELIGION AND SPIRITUALITY BELIEFS AND PRACTICES ARE CORRELATED WITH MENTAL HEALTH. I AM MADGE IN PATIENTS WHO PRAY, IT HELPS THEM COPE BETTER HAVING COPED BETTER THEY'RE ABLE TO MANAGE THEIR ILLNESS BETTER. SO IT'S ON THE LINE OF TRAJECTORY OF ASSOCIATION. MORE SPECIFICALLY RELIGION AND SPIRITUALITY BELIEFS THAT MIGHT CALL FOR ACTION AND RESPONSIBILITY SUCH AS LEAVE THAT LIFE IS SACRED. GOT SAIDIST IMPORTANT, I NEED TO DO EVERYTHING I CAN TO TAKE CARE OF MY BODY. I'M CHRISTIAN. THE BODY IS A TEMPLE OF THE HOLY SPIRIT. AND SINCE THE BODY IS THAT TEMPLE ONE MUST TAKE CARE OF IT. BUT WE ALSO IMAGINE HOW SPIRITUALITY AND RELIGION, PARTICULARLY MIGHT DELAY OR DEFER ACTION IN SELF MANAGEMENT. ING ON GOD FOR A MIRACLE. GOD IS IN CONTROL NOT ME. GOD IS JUDGING ME FOR MY SINS, THESE WOULD BE DIFFERENT PARTICULAR RELIGIOSE OR SPIRITUAL BELIEF THAT MAY HAVE THIS AFFECT OF DELAYING MANAGEMENT. I'LL STOP THERE. JUST TAKE QUESTIONS. [APPLAUSE] I THINK WE HAVE ONE MINUTE. >> THANK YOU FORAYER LECTURE. BESIDES THE INDIVIDUAL'S RELIGION OR SPIRITUALITY ONE THING I'VE SEEN A LOT IN THE ELDERS THAT I'VE INTERVIEWED IS THE COMMUNITY ASPECT OF THE RELIGIOUS EXPERIENCE AND ACTUALLY HAVE WELL THE LADIES ARE GOING TO MISS ME IF I DON'T COME. KIND OF ALMOST THAT, AGAIN, SOME OF THE VULNERABILITY, THE SHARING, THAT RECIPROCITY THAT COMES. AND THAT BEING IN AND OF ITSELF FEELING, ANY THOUGHTS ON THAT? >> I SKIPPED OVER THIS SLIDE. WE IMAGINE, ABSOLUTELY CLEARLY ASSOCIATED WITH SOCIAL SUPPORT OF VARIOUS KINDS SO JUST -- IT'S PROBABLY GOING TO SOMEHOW MEDIATE ADHERENCE IN ONE WAY OR ANOTHER. GIFT. WILL PUT ONE IN A CERTAIN DISPOSITION TOWARDS RECEIVING MEDICAL CARE. INCREASING TRUST IN PHYSICIANS OR IN HEALTH CARE BECAUSE THEY ARE AUTHORITY FIGURES AND HAVE BEEN SOCIALIZED TO BELIEVE TO SUBMIT TO AUTHORITIES. RECOGNIZING THAT ONE'S MEDICAL CAREGIVER MIGHT BE SPIRITUAL OR RELIGIOUS LIKE THEM HAVING THAT WOULD HYPOTHESIZE WOULD LIKELY INCREASE ADHERENCE. THEN THE COMMUNITY THEMSELVES PLAYING A SPECIFIC ROLE, ESPECIALLY PRACTICAL ROLE IN CARRYING OUT SOCIAL SUPPORT WHETHER IT'S TAKING TO THE GROCERY STORE OR TO A DOCTOR'S APPOINTMENT. >> YOU SHOULD HEALTH SCIENCES MEASURE RELIGION AND SPIRITUALITY? >> YES. [ LAUGHTER ] >> FOLLOW UP WHEN YOU HAD PREVIOUS SLIDE ONE YOU JUST MENTIONED, WHAT ABOUT A PATIENT WHO HAS HEALTH CARE PROVIDER WHO DOESN'T SHARE, WHICH I THINK IS PROBABLY PRETTY COMMON. MIGHT NOT EVEN WANT TO DISCUSS THAT TYPE OF THING, WHICH IS ALSO PRETTY COMMON. >> SURE, THAT IS A COMMON SCENARIO. THE QUESTION AS HEALTH CARE PROFESSIONAL IF THEY DON'T SHERRY RIDGE US OR SPIRITUAL BELIEF WITH THEIR PATIENT, AT LEAST WITHIN PALLIATIVE CARE WORLD THE RECOMMENDATION IS THAT THEY SHOULD ASK WHETHER RELIGION AND SPIRITUALITY IS IMPORTANT THEN THEY SHOULD FIND SOMEONE, WHETHER IF -- FIND SOMEONE TO HELP THEM WITH THEIR RELIGIOUS AND SPIRITUAL NEEDS. IF THERE IS DISCORD ANSWER, I WOULD HYPOTHESIZE, YES. BUT THERE'S NO EVIDENCE. IN ANY CONTEXT THAT I'M AWARE OF. BUT IN OTHER DOMAINS SUCH AS RACE, WE KNOW THAT PHYSICIANS WHO ARE BLACK WORKING WITH A PATIENT WHO IS BLACK THAT CREATES A LEVEL OF CONCORDANCE THAT -- CREATES TRUST AND INCREASES. RERIDGE -- RELIGION AND SPIRITUALITY IS MORE OF A POWERFUL EFFECT. BOTH WAYS. >> I'M WONDERING IF YOU HAVE ANY INFORMATION ABOUT RS IN ACCORDANCE BUT MORE IMPORTANTLY ALONG DEVELOPMENTAL STAGES? >> WHAT DO YOU MEAN? >> WELL, I THINK THAT IF YOU LOOK AT, I DON'T KNOW, THERE'S LOTS OF -- LOOK AT TYPES OF STAGES, THAT YOU'VE SPOKEN TO END OF LIFE, MIGHT HAVE BEEN ADULT PATIENTS PERHAPS THEY WERE PARENTS OF CHILDREN, I DON'T KNOW. BUT ONE MIGHT THINK THAT THEY LED A LONG LIFE BECAUSE OF GOD AND THOSE SORTS OF THINGS, WE'VE HEARD SOME INFORMATION ABOUT USED WITH HIV, DISADVANTAGES WITH HIV AND MEETING THEM ALONG THE RF CONTINUUM MIGHT NOT BE SOMETHING THAT WOULD BE ANTECEDENT TO SELF MANAGEMENT OR RELATE TO AN OUTCOME. >> I WAS THINKING ABOUT THAT DURING THIS TALK, I DON'T KNOW THE LITERATURE THAT WELL BUT I'M WILLING TO BET THAT RELIGION AND SPIRITUALITY IS PLAYING A MAJOR ROLE IN THE NEGATIVE DIRECTION. GO AHEAD. >> YOUTH OF COLOR WITH HIV ARE VERY RELIGIOUS AND SPIRITUAL. AND YET THEY FEEL KIND OF SHUNNED BY THEIR COMMUNITY. I THINK WE'VE BEEN ATTICA NUN DRUM ABOUT WHAT TO -- WE'VE BEEN AT A CONUNDRUM, SOME PLACES YOU CAN SEND THEM TO IT'S NOT ALWAYS CONVENIENT. >> IT'S A CONUNDRUM. THERE'S NO SIMPLE ANSWER. IT'S A BIG PROBLEM. IT HAS TO GET ADDRESSED SOMEHOW. I BET MANY FEEL PUNISHED. . WHO IS SUPPOSED TO RESPOND TO IT'S A BIG QUESTION. >> GETTING BACK TO SHOULD HEALTH SCIENTISTS MEASURE RELIGION AND SPIRITUALITY, ONE WOULD THINK THAT THE HEALTH SCIENTIST WOULD NEED TO BE COMFORTABLE IN THAT AREA, PUT IT THAT WAY. TO HANDLE THE DIFFICULT QUESTION. >> I THINK SO. WORKING IN INTER-DISCIPLINARY TEAMS I THINK IS ABSOLUTELY KEY. WORKING WITH -- WORKING WITH CLERGY IS THE DIRECTION OF ONE OF ARRESTED HE'S IS GOING, THE ISSUES REALLY LIE AMONG MINORITY CLERGY, EVANGELICAL CLERGY, PENTECOSTAL CLERGY, ENGAGE THOSE PARTICULAR TYPE OFFER WHICH GEE WE HAVE TEAM OF EDUCATORS WHO CAN SYMPATHIZE AND RELATE TO AND IDENTIFY WITH CLERGY OF THAT NATURE. I DON'T THINK YOU CAN DO THIS SORT OF WORK UNLESS YOU HAVE THAT LEVEL OF CONCORDANCE. IF YOU WANT IT TO BE SUCCESS. ABSOLUTELY. >> I HEAR CONCORDANCE. HEALTH PRACTITIONERS AND HEALTH CARE RESEARCHERS DETAILS ABOUT THEIR LIVES. WE HAVE NO RESERVATIONS ASKING THEM ABOUT SEXUAL PRACTICES, BODILY FUNCTIONS, WHAT IS YOUR SUGAR TODAY. DID YOU TAKE YOUR MEDICINES FOR THUS AND SO. I DON'T SEE WHY WE WOULD HAVE A PROBLEM -- I DON'T KNOW THAT OUR PROBLEM IS SIMPLY ASKING QUESTIONS ABOUT GOD. I THINK PERHAPS WE SIMPLY UNLIKE OTHER PHENOMENA WE LACK AN AGREED UPON LANGUAGE. AND SCALES TO ASK THOSE QUESTIONS AND OUR DISCOMFORT IS NOT WITH THE DIVINE. OUR DISCOMFORT IS HOW DO WE ASK THOSE QUESTIONS. HOW DO WE OPERATIONALIZE IT IN THE COP SYS THAN WAY. WHAT I THINK I HEARD FROM -- IN THE MIDDLE OF YOUR TALK, MICHAEL, I CAN COULD HAVE BEEN WRONG THAT'S WHY I DIDN'T TWEET IT. THERE WERE PEOPLE WHO WERE WRITING DURING LUNCH, I WASN'T THERE, I FEEL SO GUILTY. I HAVE TO GO TO CONFESSION AFTER. I SAID THE OPPOSITE. OKAY. WHEN DEALING WITH PATIENTS BE AMBIGUOUS AND OPEN ENDED. WHEN DOING RESEARCH OR SCIENTIFIC PURPOSES YOU NEED TO REMOVE THE FUZZINESS AND YOU NEED TO COME DOWN ON VERY CLEAR DEFINITION, WHAT YOU MEAN BY SPIRITUALITY AND/OR RELIGION. IF YOU LEAVE IT OPEN ENDED SO THAT SPIRITUALITY COULD BE COMPASSION, IT COULD BE HUMAN EXISTENTIAL CONCERN, WE DON'T KNOW WHAT WE'RE TALKING ABOUT FOR RESEARCH PURPOSES. AND THEN -- >> THE BOOK IS ONE WAY TO USARY LIABLE AND VALID MEASURES IN RESEARCH NOT CARE. CORRECT? >> THAT'S CORRECT. THIS IS RESEARCH TALK. DARCY GRAVE I USED TO BE FACULTY MEMBER AT MEDICAL SCHOOL IN KANSAS CITY. AND THE TEMPLETON FOUNDATION IS ACTUALLY FUNDED A LOT OF MEDICAL SCHOOL CLICK A AROUND THE SUBJECT OF RELIGION AND SPIRITUALITY BUT TEACHING PHYSICIANS HOW TO TAKE SPIRITUAL HISTORY AND USING THOSE MORE VAGUE TERMS, USING THINGS LIKE, WHAT IS YOUR FAITH, HOW DO YOU WANT ME TO USE IT, DO YOU HAVE COMMUNITY, THOSE SORTS OF THINGS. BUT TO GET TO THE COMFORT LEVEL, PART OF MY MEDICAL SCHOOL FACULTINESS, I WAS TEACHING HOW TO DO SPIRITUAL HISTORY USING WHAT GIVES YOU MEANING SORT OF SPIRITUALITY BECAUSE THE STUDENTS WERE VERY RETICENT ABOUT THESE SORTS OF THINGS. AFTER THEY WOULD WORK WITH OUR PATIENTS THEY WOULD HAVE TO REPORT BACK AND DO REFLECT SIEVE ESSAY. I HAD A STUDENT WRITE, I DID NOT ASK THE PATIENT ANYTHING ABOUT THEIR SPIRITUAL HISTORY BECAUSE I DEEMED IT TOO PERSONAL. I THEN PROCEEDED TO DO THE ANAL EXAM. AND SO I THINK ARE SOME THINGS THAT STILL NEED TO BE WORKED UPON. BUT I HAD MY STUDENTS SHADOW HOSPITAL CHAPLAINS AS PART OF THEIR COMMUNICATIONS HOMEWORK. THEY HAD TO FIGURE OUT HOW TO ASK OPEN-ENDED QUESTIONS AND ALL OF THOSE SORTS OF THINGS. THIS WAS BACK IN 2002, 2003 I'M SURE THERE'S BEEN A LOT OF PROGRESS SINCE THEN. THERE IS STUFF HAPPENING ON THE MEDICAL EDUCATION SIDE, BUT HAVING THESE OPERATIONAL DEFINITIONS ON THE RESEARCH SIDE IS ABSOLUTELY CRITICAL. >> JUST LIKE POLITICS. WE CAN GO ON FOREVER. WE WON'T ASK THE QUESTION ABOUT POLITICS. DO WE HAVE TIME FOR ONE MORE QUESTION? THEN WE END WITH THE LAST QUESTION. >> THANK YOU. FIRST OF ALL I KIND OF FELT UNCOMFORTABLE WITH THE TALK BECAUSE IT STARTED WITH RELIGION AND SPIRITUALITY AND THEN YOU KIND OF NARROWED IT DOWN TO JUST RELIGION. I THINK THERE SHOULDN'T BE COMBINED LIKE THAT. THE SECOND IS, JUST LIKE IN LINDA'S TALK, SHE COMBINES DIFFERENT MODALITIES THAT PROVIDE THE SAME THING SO SHE COMBINES RELIGIOUS MOVEMENT. I THINK RELIGION AND SPIRITUALITY ALSO SHOULD BE COMBINED NOT BY THE TITLE OR BY THE COUNTRY OF ORIGIN OR BY RACIAL BUT BY THE AFFECT THAT THIS SPIRITUALITY OR RELIGIOUS PERSON HAS HUMAN BODY. FOR EXAMPLE, THERE ARE A LOT OF SPIRITUAL PROCESSES OR SYSTEMS OF BELIEF THAT DO NOT HAVE SINS OR PUNISHMENT AS PART OF IT. IN THIS CASE A QUESTION ABOUT WHETHER I WAS PUNISHED BY GOD IS JUST IRRELEVANT. I THINK THE DIFFERENT RELIGION AND SPIRITUALITY SHOULD BE DONE NOT BY THE NAME OF THE MOVEMENT BUT BY FACT IT HAS ON HUMANS' SOCIAL AND HEALTH PROCESSES. I WONDER IF YOU CAN COMMENT ON THAT. >> IT'S A COMPLICATED TOPIC. BUT I WOULD VERY BRIEF I WOULD JUST SAY TWO THINGS. BOTH OF WHICH I ACKNOWLEDGE ARE CONTROVERSIAL AND I'M NOT TRYING TO SAY CONTROVERSIAL THINGS, I SUPPOSE. ONE IS I WOULD AGAIN ENCOURAGE TO YOU AT LEAST LOOK AT NANCY AMMERMAN'S ARTICLE IN THE "JOURNAL OF SCIENTIFIC STUDY OF RELIGION. THAT LOOKS AT THE USAGE OF RELIGION AND SPIRITUALITY AMONG PEOPLE WITHIN THE UNITED STATES. ITS USAGE BY MOST PEOPLE IS CONCEPTUALIZATION IS THAT THEY ARE POROUS INTEGRATED IDEAS. THAT'S HOW MOST PEOPLE CONTINUE TO CONCEIVE THEM. SECONDLY, THIS IS EVEN MORE CONTROVERSIAL, I'LL SAY IT AS WELL. CANDY BROWN, RELIGIOUS STUDIES SCHOLAR AT INDIANA UNIVERSITY CAME OUT IN A BOOK IN 2012 PUBLISHED CALLED "HEALING GODS" OR NO HEALING GODS" SHE ARGUES THAT SHE LOOKS AT SPECIFIC SPIRITUAL PRACTICES THAT HAVE BEEN ADOPTED WITHIN HEALTH CARE CONTEXT INCLUDING YOGA AND OTHER MEDITATIVE PRACTICES. HE ARGUES THAT THESE PRACTICES ARE INDEED RELIGIOUS. AND THAT ADVOCATES OF THESE PRACTICES HAVE ATTEMPTED TO DISTANCE THEM FROM RELIGION ARGUING THAT THEY'RE SPIRITUAL NOT RELIGIOUS AND HAVE FRAMED THEM IN SECULAR TERMS. SHE ARGUES THAT CONCEPTUALLY AND THEORETICALLY ALL OF THESE PRACTICES HAVE RELIGIOUS GROUND AND CONTINUE TO HAVE RELIGIOUS THEORIES EMBEDDED WITHIN THE PRACTICES. IT'S AN INTERESTING ARGUMENT. I UNDERSTAND YOU WOULDN'T AGREE WITH IT. BUT I THINK IT NEEDS TO BE TAKEN SERIOUSLY. IT ALL COMES DOWN AGAIN TO THE QUESTION OF DEFINITION. [APPLAUSE] >> THANK YOU. >> WE'RE A LITTLE BEHIND. WE HAVE ONE LESS SPEAKER. A DEATH IN THE FAMILY HAS LED TO LAURA SZALACHA NOT BEING ABLE TO JOIN US. BUT ANOTHER DISTINGUISHED COLLEAGUE IS DR. PERIFROM NYU I'LL TURN THINGS OVER TO HIM. DO YOU WANT TO PRESENT FROM THERE? GREAT. >> FOR THE LAST 20-PLUS YEARS I CAN'T HELP BUT THINK THAT THE ACTIONS OF PEOPLE WHO USE RELIGION TO FIGHT AGAINST MARRIAGE AND EQUALITY IS DETRIMENTAL TO THE HEALTH OF GAY MEN I'LL TALK ABOUT THAT TODAY. SO, WHAT -- WHEN I WAS ASKED TO DO THIS TALK I WASN'T SURE WHAT I WAS GOING TO DO. I'M NOT REALLY SURE WHAT I'M GOING TO DO STILL I'M GOING TO TRY TO STRING YOU ALONG. I HAVE SLIDES. AT LEAST I HAVE SLIDES. I THOUGHT, WHAT IF YOU WANT FROM ME. AS I SAID A MOMENT AGO, I HAVE -- [ LAUGHTER ] GOING TO BE GREAT OR GOING TO FLOP. THERE'S NO GRAY AREA HERE. I'VE BEEN STUDYING THE HEALTH OF GAY MEN, FIRST AROUND ISSUES OF HIV FOR SOME 20-SOMETHING YEARS. NOW MORE BROADLY HIV WITHIN LARGER CONTEXT JUST BECAUSE OF THE EVOLUTION OF THE EPIDEMIC. WHEN I WAS SPEAKING, WHAT SIT ABOUT MY RESEARCH THAT SPEAKS TO SELF MANAGEMENT AND HEALTH. I GAVE SUBMIT THOUGHT. I REALIZED THAT WHAT I THINK I DO IN MY WORK, WHAT I HOPE I DO IN MY WORK, WHICH I THINK SPEAKS TO THESE PARTICULAR ISSUES IS UNDERSTANDING HEALTH ISSUES FROM A FRAMEWORK THAT IS BIOSOCIAL FRAMEWORK. THEN DOING RESEARCH THAT REALLY LIVES ON THE THEORY AND PRACTICE LOVE THE IDEA, BUT BIOPSYCHOSOCIAL AND DOING WORK, BUT I DON'T THINK RESEARCH OFTEN REALLY IMPLEMENTS THESE THINGS. SORT OF LIKE, WE TALK ABOUT MULTI-DISCIPLINARY PERSPECTIVE. I USE THESE TERMS, DOES MY WORK REALLY DO THIS. JUST TALK BRIEFLY ABOUT THESE IDEAS AND THEN ILLUSTRATE FROM YOU -- FROM MY WORK WHAT I THINK IS EVIDENCE FOR ME ESPOUSING THIS IDEA ACTUALLY IMPLEMENTING IT IN MY RESEARCH THEN SOMEHOW TRANSLATING THAT TO SELF MANAGEMENT. LET ME START BY TALKING ABOUT THIS. I LOVE, LOVE, LOVE THIS BOOK. JUST FINISHED WRITING CHAPTER, ONE AREA IS ON HIV AND AIMING I WROTE A BOOK COUPLE OF YEARS AGO ABOUT THE LIFE EXPERIENCES OF LONG TERM SURVIVORS. I'VE BEEN WRITING CHAPTER ABOUT PSYCHOLOGICAL HEALTH OF OLDER PEOPLE WITH HIV. OPTIMAL HIV SELF MANAGEMENT MUST BE FRAMED WITHIN LARGER CONTEXT THAT SIMULTANEOUSLY ADDRESSES IV AND COMORBIDITIES, WHILE CONSIDERING HOW SOCIAL AND CULTURAL FACTORS UNIQUELY INTERSECT TO INFLUENCE OLDER AFRICAN AMERICAN WOMEN'S SELF-MANAGEMENT STRATEGIES. I BELIEVE THAT COMPLETELY. AND I THINK THAT IN THE LAST SEVERAL YEARS IN THE HIV WORLD THERE'S BEEN THIS WHOLE MOVEMENT OF THE BIOMEDICALLIZATION OF PREVENTION. WITH THIS NOTION WE'RE GOING TO FIND PEOPLE WITH HIV, PUT THEM ON MEDICATION, VIRALLY SUPPRESSED, NOT SURPRISED. ONLY 30% GET VIRALLY SUPPRESSED. THEN GET PREPPED WITH HIV NEGATIVE PEOPLE. THEY'RE GOING TO TAKE IT EVERY ATE THE AIDS EPIDEMIC, TO THANK YOU GOVERNOR CUOMO FROM NEW YORK. WE KNOW THE FACT OF THE MATTER IS THAT ANY HEALTH CONDITION IS NOT JUST A BIOLOGICAL ONE. IT IS PSYCHOLOGICAL PHENOMENA AND SOCIAL. SO WHEN WE THINK ABOUT IT FROM THAT PERSPECTIVE HEALTH IS SOMETHING ABOUT ALL OF THESE AREAS AND THE REASON WE THINK ABOUT HEALTH AS AN -- PROBLEMS WITH HEALTH AS ILLNESS AS COMPARED TO DISEASE. USING BIOPSYCHOSOCIAL PERSPECTIVE MOVES AWAY FROM IT SIMPLE PATHOGEN-CENTERED APPROACH. FOR MUCH MORE HOLISTIC APPROACH ABOUT HEALTH AND WELL BEING. SO BIOPSYCHOSOCIAL PERSPECTIVE WE THINK ABOUT THE BIOLOGICAL FACTORS FOR SURE BUT ALSO WITH THEIR INTERSECTION WITH THE PSYCHOLOGICAL FACTORS AND SOCIAL FACTORS HOW THESE THREE RELATE TO EACH OTHER AND INFLUENCE HEALTH. THAT IS A SUMMARY CHART HERE FOR YOU. THIS INSTITUTE OF MEDICINE CHART ILLUSTRATES IT VERY BEAUTIFULLY, WHERE YOU THINK ABOUT THESE CONCENTRIC CIRCLES WITH BIOLOGY IN THE CENTER GOING ALL THE WAY OUT TO EVENTUALLY LOCAL, NATIONAL, GLOBAL POLICIES AND POLITICS. AND GOING BACK TO THE POINT I MADE EARLIER, THIS ISSUE, I DON'T WANT TO UNDER PLAY THIS ISSUE THAT DISCRIMINATION IS A FACTOR THAT UNDERMINES HEALTH SOMETHING THAT WE REALLY NEED TO THINK ABOUT CAREFULLY IN THIS ROOM. IT IS NOT SIMPLY ABOUT BEHAVIOR. IF IT WERE SIMPLY ABOUT BEHAVIOR EVERYBODY WOULD BE WEARING A CONDOM ALL THE TIME. AND EVERYBODY WOULD WHO TAKE THEIR PILLS, THERE WOULDN'T BE HIV PROBLEM IN THIS COUNTRY IN FACT AS I WROTE FEW YEARS AGO DISCRIMINATION AND HOMOPHOBIA ARE FACTORS THAT ARE FUELING THE HIV EPIDEMIC IN THIS COUNTRY MORE THAN ANYTHING ELSE. MORE THAN SIMPLE BEHAVIOR THAT'S WHY I REALLY LOVE THIS PARTICULAR VISUAL. AND IT'S VERY EVIDENT IN THE IDEAS PRESENTED IN THIS INSTITUTE OF HEAD CANE REPORT. ONE OF MY FAVORITE AGENCIES IS THE PARENTS AGAINST TRUST IN THE U.K. THIS IS A MODEL, THEY ARE WAY AHEAD OF THE CURVE HERE. THIS IS A MODEL THAT THEY DEVELOPED I THINK IN THE EARLY 2000s TO TRY TO THINK ABOUT THE AIDS EPIDEMIC IN THEIR POPULATIONS. WHICH LOOKS VERY MUCH LIKE THE AIDS EPIDEMIC IN OUR POPULATIONS. WHICH IS INTERESTING PHENOMENA, WHOLE OTHER -- NATIONAL HEALTH SERVICE WHICH IS OUR HEALTH SERVICE GETTING SAME OUTCOMES HERE. BUT THIS PARTICULAR MODEL DOES, I THINK A VERY NICE JOB OF SHOWING THAT EVEN THINGS LIKE COMMUNITY BUSINESSES AND MEDIA HAVE IMPACT ULTIMATELY ON HIV IN OUR COUNTRY. AND POLICIES OBVIOUSLY IN SOCIAL SERVICES. AND BEHAVIORS ARE THERE, OF COURSE, IN THE CENTER. BUT BEHAVIORS ARE NOT ENOUGH TO EXPLAIN. I AM GOING TO TALK TO YOU NOW, NOT MY BIG DYSFUNCTIONAL FAMILY BUT SOMEBODY ELSE. I'M GOING TO TALK ABOUT THE STUDY THAT WE'VE BEEN DOING FOR THE LAST SEVEN YEARS THAT WE REFER TO AS THE P18 COHORT STUDY. THIS IS THE STUDY THAT'S BEEN FUNDED BY THE NATIONAL INSTITUTE ON DRUG ABUSE. IT STUDY THAT WAS FIRST FUNDED IN 2009. AND WE HAVE BEEN FOLLOWING A COHORT OF YOUNG MEN, GAY, BISEXUAL AND OTHER MSM. I KNOW THAT SEEMS A MOUTHFUL BUT IF YOU JUST SAY MSM IT SHORT CHANGES THE IMPORTANCE OF SEXUAL ORIENTATION IN HEALTH MATTERS. I'M A GAY MAN. I'M AN MSM. AND WE HAVE BEEN LOOKING AT BOTH DEVELOPMENT OF HEALTH PROBLEMS AND RESILL YEN SEES OVER TIME. AND LOOKING AT VERY MUCH BIOLOGICAL, PSYCHOLOGICAL AND SOCIAL FACTORS THAT DRIVE THOSE SELF CONDITIONS. FUNDED US AGAIN, NOW THE GUYS ARE 22-23 OPENED UP COHORT WE'RE FOLLOWING THEM AND NOW WE DO FULL ON TESTING AND HIV TESTING, COME IN EVERY SIX MONTHS. IT'S LIKE -- FOR SOME OF THEM THEIR HOME AWAY FROM HOME. FOR SOME THEY COME IN FOR HEALTH CHECK UPS INSTEAD OF GOING TO A DOCTOR. WE'RE LOOKING AT MULTIPLE AREAS OF HEALTH STATES AND THE STUDY IS DIRECTED BY THEORY OF IS IN KELP MIC -- SYNDEMIC, IT WAS BY SOMEBODY AT THE UNIVERSITY OF CONNECTICUT WHOSE NAME I CAN'T REMEMBER RIGHT NOW. BUT, ANYWAY, IT WILL COME TO ME BECAUSE MY EXECUTIVE FUNCTIONS ARE NOT FUNCTIONING RIGHT NOW. MAYORAL SINGER, THANK -- MERYL SINGER. THANK YOU. AS UNDERTAKEN OVER THE LAST DECADE. BASICALLY THEORY WHERE YOU SEE ONE HEALTH PROBLEM YOU SEE OTHER HEALTH PROBLEMS. YOU SHOW ME MENTAL HEALTH PROBLEM I'LL SHOW YOU SUBSTANCE ABUSE PROBLEM. I'LL SHOW YOU SEXUAL BEHAVIOR PROBLEM. HEALTH PROBLEMS DON'T EXIST IN ISOLATION THEY'RE SYNERGISIC THEY FUEL EACH OTHER, THEY MAKE EACH OTHER WORSE THAT'S ONE PART OF THE THEORY THAT I THINK COMPLETELY TRUE. THEN OTHER PART OF THE THEORY THAT I ALSO THINK IS COMPLETELY TRUE IS THAT THERE ARE PSYCHOSOCIAL DETERMINANTS THAT DRIVE THESE. THAT INDIVIDUALS AND GROUPS THAT EXPERIENCE MORE INEQUALITY, THEY EXPERIENCE MORE LEVELS OF DISCRIMINATION, MORE STRESS BECAUSE OF MINORITY STATUS AT HIGHER LEVELS AND AS A RESULT ULTIMATELY HAVE WORSE HEALTH STATE. AND MERERYL SINGER DEVELOPED THIS THEORY IN THE EARLY HE '90s TRYING TO EXPLAIN HIV MIC IN HISPANIC WOMEN. WHY THIS WAS POPULATION SO AFFECTED. BUT WE WHO HAVE BEEN DOING WORK WITH GAY HELP HAVE SORT OF TAKEN THIS AND RUN WITH THIS THEORY. THIS IS WHAT THIS STUDY IS REALLY TRYING TO GET AT WHICH IS LOOKING AT THE DRIVERS, THE MALLEABLE DRIVERS, BECAUSE THAT'S WHAT I ALWAYS AM INTERESTED IN THINGS THAT ARE CHANGEABLE. TO DEVELOP INTERVENTION THAT CAN AFFECT THE HEALTH OUTCOMES OF THESE YOUNG MEN. RECENTLY THANKS THE LOVELY NIH AGAIN, WE GOT FUNDED DUE TO ANOTHER STUDY WHICH IS ADDED TO THIS STUDY ANCILLARY STUDY ON HPV, BECAUSE THESE YOUNG MEN AND OUR COHORT ARE NOT VACCINATED FOR VP THERE IS HIGH RATE OF ANAL CANCER IN GAY HELP AND HIV POSITIVE GAY MEN IF THESE YOUNG MEN CAN CONVERT I'LL SHOW YOU THOSE NUMBERS VERY SOON, ANAL CANCER IS POP PEWABILITY. WE GOT FUNDED TO DO GENOTYPE TESTING TO DETERMINE ONE OF -- EXPOSED TO ANY OF NINE STRAINS THAT COULD POSSIBLY CAUSE CANCER ORAL AND ANAL CANCER IN THEIR LIVES STAY TUNE FOR THAT. HERE IS AGAIN ANOTHER WAY OF THINKING ABOUT THE THEORY AND PAPER THAT I WROTE WITH MY COLLEAGUES THAT BASICALLY LOOKS AT THIS ENDEMIC HEALTH PROBLEM IN THIS POPULATION, THINKING ABOUT IN THIS VERY HOLISTIC WAY, SUBSTANCE USE, MENTAL HEALTH, VIOLENT AND SEXUAL ABUSE, HIV, ONE OF MY STUDENTS IS DEVELOPING BEAUTIFUL PORTFOLIO OF WORK ABOUT INTIMATE PARTNER VIOLENCE IN THIS. WHICH IS REALLY UNDERSTUDIED. BIOLOGICAL INFLUENCES WHICH AFFECT THESE HEALTH STATES. AFTER THE FIRST 36 MONTHS, WE TESTED EVERY SINGLE MAN AS THEY CAME IN FOR HIV, FOR HIV ANTIBODIES AND TESTING, WHAT HAVE YOU. AT THE BEGINNING THERE WERE 600 MEN AND THERE WAS PREVALENCE RATE OF 1% AT THE BEGINNING, 594 MEN WERE HIV NEGATIVE. AT THE BASELINE ASSESSMENT IN LIKE 2009, 2010, 2011. SO WE WANTED TO SEE WHAT WERE THE FACTORS THAT EXPLAINED INCIDENT IN THIS GROUP. IN THIS GROUP OF MEN AS THEY PROGRESSED OVER TIME. AND WHAT WE SAW WAS THAT AFTER ABOUT THREE YEARS OF FOLLOW UP, WE HAD 43 CONVERSION. ABOUT 7%. 7% OF THESE YOUNG GUYS BY THE TIME THEY WERE AGE NOW, WHAT ARE THEY 18 HAT 36 MONTHS, THREE YEARS, ABOUT 21 ARE HIV POSITIV. WHAT IS IT THAT IS EXPLAINING THIS, WHY? LIKE WE HAVE KNOWLEDGE, WE HAVE EDUCATION, WE HAVE CONDOMS, WE HAVE IT, WHY IS IT STILL HAPPENING? STARTED TO LOOK AT THESE FAG THAT DRIVE THIS HERE IS SOME THINGS THAT IS NOT SURPRISING, BUT I DON'T THINK REALLY HELPFUL. THE BLACK MEN ARE MUCH MORE LIKELY TO BECOME HIV POSITIVE THAN WHITE MEN. BUT ANY STUDY WILL TELL ME THAT. MORE INTERESTING IS THE FACT THAT MEN WHO WERE LOWER -- HAD HIGHER LIKELY OF SAY ROW CONVERTING. WHEN WE STARTED TO LIKE -- THAT WAS INTERESTING FINDING. BUT PERHAPS EVEN MORE INTERESTING WAS THE FACT THAT THESE YOUNG MEN WHO WERE ZERO CONVERTING SENDED TO LIVE IN HIGHER NEIGHBORHOODS OF HIV PREVALENCE. UNCONTROLLED IN THEIR NEIGHBORHOODS. WHILE NOT SIGNIFICANT YOU SEE A TREND THAT THEY ALSO TENDED TO LIVE IN AREAS THAT HAD HIGHER POVERTY LEVELS. GETTING WHERE I'M GOING HERE? IN FACT WHEN I SHOW YOU THIS ON A MAP, HERE IS A MAP OF NEW YORK CITY. WHAT BURROUGH IS THIS? QUICKLY. WE STILL WONDER WHY. HERE IS THE POVERTY LEVEL AND DARKER AREAS ARE THE HIGHER POVERTY LEVELS AND HOPEFULLY THIS IS GOING TO WORK BUT IT DOESN'T SEEM TO BE WORKING. COME ON. THERE YOU GO. WITH THE RED CIRCLE ARE THE YOUNG MEN IN THE STUDY WHO SERO-CONVERTED. IF I GO TO THE NEXT PICTURE WHICH IS HIV DIAGNOSIS, DARKER RED, HIGHER RATES, AGAIN YOU SEE VERY SIMILAR PATTERN. THEN HERE IS PEOPLE LIVING WITH HIV. AGAIN VERY SIMILAR PATTERN. THAT'S REALLY INTERESTING. I HAD ANOTHER CHART HERE THAT I THOUGHT IT WASN'T RELEVANT IF I ACTUALLY SHOWED YOU A PREVALENCE OF HIV IN NEW YORK CITY WHERE PEOPLE WERE LIVING, WHERE PEOPLE WERE DYING, YOU WOULD SEE THAT VERY RICH NEIGHBORHOOD LIKE CHELSEA AND GREENWICH VILLAGE. OF WHAT DOES THIS TELL ME? WHAT DOES IT TELL ME IN TERMS OF THE WORK HERE. IN TERMS OF SELF MANAGEMENT HOW DOES THIS ALL RELATE TO IT. I THINK IT REINFORCES THE IDEA THAT RESEARCHERS AND CLINICIANS WITH BIOPSYCHOSOCIAL PERSPECTIVE THAT PLACES THE PERSON AT THE CENTER, RIGHT? THAT REALIZES THAT THE PERSON COMES INTO THE HEALTH SITUATION WITH LOTS OF REALITY. AND THAT WE CANNOT IGNORE THESE REALITIES. RELIGION BEING ONE OF THOSE REALITIES THAT THEY COME TO THE HEALTH CARE SITUATION WITH. AND IF WE DO THAT WE'RE GOING TO FALL SHORT. I WAS HAVING A CONVERSATION WITH BILL BEFORE ABOUT NEW YORK STATE END OF AIDS PROGRAM AND AS THREE BASIC COMPONENTS TO IT. NUMBER ONE, IDENTIFY PEOPLE WHO ARE HIV POSITIVE. PUT THEM ON TREATMENT. GET SUPPRESSED THEN BECAUSE PEOPLE TAKE THEIR MEDS EVERY DAY, RIGHT? AND THEN GIVE PREP TO PEOPLE WHO ARE AT RISK. DOES EVERYONE KNOW WITH I'M TALKING ABOUT? IN CASE YOU DON'T PREEXPOSURE PROPHYLAXIS. COMING DOWN THE WAY. THE PROBLEM IS THAT YOUNG MEN IN THE STUDY WHO DON'T GO TO THE DOCTORS, THEY DON'T GO TO THE DOCTORS AT ALL THEY TEND TO PRESENT WHEN THEY HAVE A PROBLEM, USUALLY A SEXUALLY TRANSMITTED INFECTION. YET WE EXPECT THAT IF THEY'RE GOING TO TAKE PREP THEY'RE GOING TO SEE A DOCTOR EVERY THREE MONTHS. I DON'T KNOW. THAT'S THE KIND OF STRUCTURAL STUFF THAT I THINK IS A HUGE PROBLEM. IN SUMMARY FOR THIS FIRST POINT IF WE SEEK TO EMPOWER INDIVIDUALS WITH THE TOOL TO MANAGE THEIR OWN HEALTH WE MUST ATTEND TO THE REALITIES OF THEIR LIVES AND MULTIPLE LESS OF FACTORS THAT SHAPE THEIR WELL BEING. PART TWO. INTERCEPTION OF THEORY AND PRACTICE. AND SO HERE IS A QUOTE FROM MY BOOK IN 2009 ABOUT METH USE WHERE I WRITE, ANY IMPACT ON THE PROLIFERATION OF METHAMPHETAMINE ADDITION WILL BE MOST SUCCESSFULLY REALIZE UNDERSTAND RESEARCHERS WORK WITH PRACTITIONERS TO ADDRESS THE METHAMPHETAMINE PROBLEM. CHANGE WILL COME ABOUT IF ALL OF US, RESEARCHERS AND PRACTITIONERS, MOVE OUTSIDE OF OUR XYLOS, OUR OWN COMFORT ZONE AND BUILD ON COMMON GROUND AT THE INTERSECTION OF RESEARCH AND PRACTICE. I THINK TO THINK I REALLY BELIEVE AND I DO THAT. I DO NOT DO INTERVENTION WORK. WE DO NOT DO INTERVENTION WORK AT OUR RESEARCH CENTER. AND WHY DO WE NOT DO IN VEHICLES WORK? NOT BECAUSE WE DON'T WANT THE MILLIONS OF DOLLARS. INTERVENTION WORK, WE'RE DO IT WITH COMMUNITY PARTNER. SO AS WE ARE RIGHT NOW WE'RE DEVELOPING INTERVENTION STUDY FOR OLDER ADULTS LIVING WITH HIV THAT USES PUZZLES TO SORT OF MAKE EXECUTIVE FUNCTIONS BETTER BUT WE'RE DOING IT WITH A GROUP CALLED FRIENDS INDEED IN NEW YORK CITY THAT SERVES OLDER HIV POSITIVE ADULTS. WE THINK THAT IS THE WAY WE WORK BEST F. IT'S TAKING PLACE IN THE COMMUNITY. THEY DON'T MAKE IT TO THE CLASSROOM, RIGHT? THESE GAPS BETWEEN RESEARCH AND PRACTICE, ONE OF THE THINGS THAT I THINK WE STRUGGLE WITH AS RESEARCHERS, WHICH IS HOW DO WE REALLY TAKE THIS WORK AND HAVE IT AFFECT PEOPLE'S REAL LIVES. THE ANSWER I THINK IS BY CREATING TEAMS THAT MARY RESEARCH WITH PRACTITIONERS. AT THE SAME TIME WHILE WE'RE DOING THIS RESEARCH, WORK COMMUNITY-BASED AGENCIES ARE LIFE EXPERIENCES AND REACTION. AT THE BEGINNING OF THE AIDS EPIDEMIC IN 1980s PEOPLE DEVELOPED PROGRAMS THAT WOULD WORK BECAUSE THAT SORT OF WHAT THEY FELT. THERE WASN'T NECESSARILY A THEORY OR WHAT HAVE YOU BUT THEY PUT THEM IN PLACE. AND TRUTH BE TOLD NOT SO DIFFERENT THESE DAYS, RIGHT? AS MANY -- THINK ABOUT THIS VISUALLY THERE'S THIS ENORMOUS DISCONNECT THAT EXIST BETWEEN RESEARCH EVIDENCE AND PRACTICE, THERE'S A LACK OF ATTENTION OFTEN ON OUR PART, WE RESEARCHERS, TO COMMUNITY GROUPS, AGENCIES AND GOVERNMENTS, LOCAL GRASS ROOTS, KNOWLEDGE AND EXPERIENCE WHICH I THINKING MAKE RESEARCH SO MUCH BETTER. AND THIS DISCONNECT IS SOMEHOW MADE WORSE -- WE THINK THAT WE SOLVED THIS DISCONNECT THROUGH PASSIVE DISSEMINATION BY GIVING OUT FLYERS OR TALKS AT CONFERENCES. BUT THE PEOPLE WHO WERE STUDYING, WHOSE LIVES WE'RE SEEKING TO IMPROVE DON'T REALLY COME TO THOSE THINGS. THEY DON'T REALLY READ BEHAVIORAL MEDICINE IN THEIR BEDS AT NIGHT. EVEN I DON'T READ BEHAVIORAL. MY ENTERTAINMENT WEEKLY IS RIGHT NEXT TO MY BED. I'M GOING TO BE HONEST. BUT WHEN YOU -- [ LAUGHTER ] VERY GOOD ISSUE LAST WEEK. BUT WHEN RESEARCHERS AND PRACTITIONERS COME TOGETHER, GREAT THINGS HAPPEN LIKE THIS. ABOUT EIGHT YEARS AGO ALL OF A SUDDEN THERE WAS THIS ATTENTION AROUND OLDER ADULTS LIVING WITH HIV. AND PROBABLY ALL KNOW THAT BY 2020 IN THIS COUNTRY, 70% OF ADULTS LIVING WITH HIV ARE AGES 50 AND OLDER. THAT'S HUGE. THESE ARE THREE EXAMPLES OF SOME COMMUNITY-BASED EVENTS, THE FIRST ONE HERE THAT I ACTUALLY HAD CHANCE TO MODERATE, WITH THE AMAZING STEVEN SPINELLA INTRODUCED ME WHERE WE HAD LIKE 500 PEOPLE WHO JUST CAME TO THIS BIG AUDITORIUM AND JUST TOLD THEIR STORIES. ABOUT WHAT IT'S LIKE TO BE OLDER ADULT LIVING WITH HIV. AND WHAT THEY NEEDED. AND WHAT THEY WANTED. AND WHAT THEY HOPED FOR. SIMILAR THINGS HAVE HAPPENED SINCE. THE GREAT THINGS THAT HAPPENED AS RESULT OF THIS IS, GMAC ONE OF THE LEADING AIDS SERVICES ORGANIZATIONS IN THE COUNTRY, IN THE EARLY DAYS HAD BUDDY PRM. THE BUDDY PROGRAM WAS FOR PEOPLE WHO WERE REALLY ILL THEY WOULD HAVE BUDDY, WOULD GO HELP CLEAN THE HOUSE, COOK THE MEALS, DO THE LAUNDRY THEN ALL OF A SUDDEN 1996 CAME AROUND PEOPLE WEREN'T DYING AS MUCH THE BUDDY PROGRAM SORT OF FADED AWAY. SHAWN MCKENNA AMAZING MAN ONE OF THE MEN I INSTAR VIEWED FOR MY BOOK REALLY HAD A BATTLE, REALLY ENCOURAGED THEM TO RETHINK THIS BUDDY PROGRAM. SO NOW REINITIATE THE BUDDY PROGRAM THANKS TO SHAWN'S EFFORT FOR OLDER ADULTS. LIKE 65 WRESTLED HIV POSITIVE PERSON NEEDS A BUDDY. SO MANY OLDER ADULTS LIVING WITH HIV ARE FEELING ISOLATED AND LONELY. SO A BUDDY PROGRAM SEEMS LIKE GREAT IDEA. WE'VE COME FULL CIRCLE. BUT THAT HAPPENS BECAUSE EVENTS LIKE THIS HAPPEN THAT BRING RESEARCHERS AND PRACTITIONERS TOGETHER. AND AGAIN ANOTHER LOVELY DIAGRAM. THE LITERATURE THIS IS ALSO REFERRED TO I BELIEVE AS EVIDENCE-BASED MEDICINE WHERE WE THINK ABOUT THE PATIENTS' CONCERNS AND CLINICAL EXPERTISE AND BEST RESEARCH EVIDENCE TRY TO BRING THOSE THREE THINGS TOGETHER OPTIMIZE CARE FOR THE INDIVIDUAL. I'M GOING TO TALK ABOUT ANOTHER EXAMPLE OF MY WORK. WHICH I THINK SHOWS -- SO, THIS IS A STUDY FOR TESTING, TO TRY TO GET UNTESTED BLACK GAY, BISEXUAL AND INTO HIV TESTING. IT WAS MULTI-SITE STUDY IN AT RAN TAX BALTIMORE, NEW YORK AND WASHINGTON, D.C. CALLED PROJECT ACCESS IN NEW YORK. WE CAME TOGETHER WITH AN AGENCY AGENCY -- I HAVE ONE MINUTE? WE CAME TOGETHER WITH AN AGENCY, WHICH IS LEADING AIDS SERVICE ORGAION LIE THEY BROUGHT EXPERTISE FROM THE COMMUNITY WE BROUGHT THE EXPERTISE FROM RESEARCH WE WANTED TO TEST WHAT WAS THE MOST EFFECTIVE WAY OF BRINGING MEN INTO TESTING. AT THAT POINT ALL THIS CONTROVERSY IN NEW YORK CITY ABOUT PARTNER NOTIFICATION, FOR YEARS AGENCIES HAD BEEN DOING MOBILE VANS, PLACED IN THE PARK WE THOUGHT THERE'S THIS OTHER APPROACH CALLED SOCIAL NETWORKING THEORY THAT MIGHT WORK BETTER. AND SO WE CAME TOGETHER AS TEAM, LO AND BEHOLD FOUND THAT SOCIAL NETWORK FIELDED THE MOST POSITIVE RESULTS. IT WAS THE METHOD THAT WAS BEST, MOST EFFECTIVE IN IDENTIFYING PREVIOUSLY UNTESTED HIV POSITIVE PEOPLE. ALTERNATIVE VENUES WAS GOOD, 6.3%, BUT NOT AS GOOD AS 19.3%. WHEN YOU LOOKED AT THIS SEXUAL BEHAVIOR OF THE PEOPLE, YOU LOOKED WHAT EXPLAINED THE POSITIVITY THE TESTING STRATEGY WAS MORE SIGNIFICANT FACTOR WITH AN ODDS RATIO OF LESS THAN ONE MEANING THAT THE ALTERNATIVE VENUE TESTING WAS MUCH LESS EFFECTIVE THAN SOCIAL NETWORK STRATEGY. BENEFITS OF LINKING RESEARCH AND PRACTICE, I'M NOT LOOKING AT THE BACK OF THE ROOM. IT SUPPORTS THE USE OF COMMUNITY-BASED APPROACH, ADVANCES THE BODY OF SCIENCE, DEMONSTRATES EFFECTIVE RESEARCH PRACTICE COLLABORATION I THINK HAS IMMEDIATE BENEFICIAL EFFECT ON MANAGEMENT OF HEALTH INDIVIDUALS AND PUBLIC HEALTH. AND CRITICAL THAT WE CLOSE THIS GAP. SO IF WE SEEK TO EMPOWER INDIVIDUALS WITH THE TOOLS TO MANAGE THEIR ON HEALTH WE MUST INVOLVE ACTIVELY. THAT CAN BE AS COMMUNITY-BASED LEVEL OR INDIVIDUAL BASED LEVEL INVOLVING THEM IN OUR RESEARCH. MANY PROBABLY HAVE COMMUNITY ADVISORY GROUPS, PROBABLY SHOULD USE THOSE MUCH MORE ACTIVELY THEY CAN HELP US GUIDE US WITH QUESTIONS THAT WE ASK AND WHAT HAVE YOU. HERE IS MY FINAL SLIDE. EFFORTS TO ENHANCE SELF-MANAGEMENT REQUIRES THAT WE USE A BIOPSYCHOSOCIAL LENS AND OPTIMAL UPTAKE OF SELF MANAGEMENT DEPEND ON TRANSLATION OF RESEARCH PRACTICE, THANK YOU VERY MUCH. [ APPLAUSE ] >> ARE THERE ANY QUESTIONS? >> THANK YOU VERY MUCH FOR YOUR TALK. SO, GOVERNMENT EVIDENCE-BASED INTERVENTION, SPEND A LOT OF TIME AND ENERGY GETTING THOSE COMMUNITY-BASED AGENCIES TO USE THOSE EVIDENCE-BASED INTERVENTIONS. THAT'S MORE. PUBLIC INFRASTRUCTURE BUT MOST OF THE FUNDING FOR HIV, IT'S STILL PUBLIC, BUT MORE IN THE MEDICAL DOMAIN. YOU HAVE ALL THESE RESEARCH FINDINGS, YOU ALSO HAVE THE TROUBLE OF IMPLEMENTING THEM IN THE REAL WORLD. I'M WONDERING IF YOU HAVE ANY INSIGHTS INTO HOW TO MOVE THAT ICEBERG TOWARD IMPLEMENTING ACTUAL THINGS THAT WORK INTO THE CLINICAL REALM. [ INAUDIBLE ] -- WAS AN HIV PREVENTION STUDY FOR POSITIVE MSM, IT WAS CALLED THE SUMMIT STUDY. WE CAME UP WITH THIS BEAUTIFUL INTERVENTION THAT WAS FUN, THAT NOBODY COULD AFFORD TO DO AFTERWARDS THEN SORT OF WENT NO WHERE FROM THERE. SO WHAT DO I THINK? HOW DO I THINK WE AVOID SITUATIONS LIKE THAT? I THINK WE AVOID SITUATIONS LIKE THAT BY WORKING IN THE CONTEXT OF THESE COMMUNITY-BASED ORGANIZATIONS. LIKE THEY CAN TELL US WHAT THEY CAN DO. I SERVE ON THE BOARD OF GMAC THERE'S LIMITED AMOUNT OF FUND AND MONEY EVERY SINGLE PENNY COUNTS F. WE WORK WITH THEM AND HAVE THEM AT THE TABLE AS WE'RE DESIGNING THING WE CAN STILL DO THE SCIENCE, WE CAN JUST DEVELOP PROGRAM THAT REPLICABLE AFTER WE'RE DONE. I THINK THAT IS PART OF THE ANSWER. CERTAINLY NOT THE WHOLE ANSWER. >> I THINK THERE'S ANOTHER PART OF THE ANSWER NOT SIMPLY WORKING WITH COMMUNITY-BASED ORGANIZATIONS BUT ALSO WORKING WITH CLINICS AND PROVIDERS AND QUALITY ASSURANCE AND BILLING PEOPLE. IN MY PREVIOUS LIFE I WAS R&D DIRECTOR FOR LARGEST MENTAL HEALTH AND SUBSTANCE ABUSE SO YOU LEARN HOW TO BE CREATIVE. AND DO MEDICAID CAP TALK. THERE CAN BE PIECES OF INTERVENTIONS OR SPECIFIC SESSION THAT ARE BILLABLE. ORGANIZATIONS NEED FUNDS, TOO. SO, BRINGING IN THOSE PEOPLE INTO THE CONVERSATION IS AS IMPORTANT AS THE COMMUNITY EXPERTS. I THINK -- AND IF ALSO WILL HELP -- BRINGING IN THOSE PEOPLE THAT ARE INVOLVED IN FACILITATING, EMPOWERING, PAYING FOR CARE ALSO HELPS TO DEVELOP IMPLEMENTABLE, FORGIVE ME, INTERVENTIONS AND MOVE THOSE -- ONCE THOSE PRACTICES ARE PROVEN TO BE BEST OR BETTER IT HELPS MOVE THEM MORE QUICKLY INTO THE SYSTEM BECAUSE THEY WERE DEVELOPED WITH THOSE PEOPLE EARLIER ON. [ INAUDIBLE ] [ INAUDIBLE ] >> HAVE YOU HAD ANY EXPERIENCE OR HAVE YOU THOUGHT ABOUT SEE OLE FOR PICORRI IN ADDRESSING SOME OF THESE ISSUES? >> YEAH, PROBABLY. [ INAUDIBLE ] >> ANY OTHER QUESTIONS? >> I AM FEEL LIKE I ENGAGED IN ANOTHER CHI GONG SESSION I FEEL ENERGIZED AFTER THAT TALK AND ENERGIZING INTERCHANGE. WE TAKE OUR NOTES AND THOUGHTS AND GROUP HOWEVER -- AS YOU ARE ABLE BECAUSE I DIDN'T DO ANY PREASSIGNING. IN YOUR FOLDERS, I THINK IN THE RIGHT SIDE, YOU WILL FIND A ROUNDTABLE DISCUSSION GUIDE. PLEASE MEET UP AS YOU ARE SO INCLINED HERE IN THE ATRIUM AND ANSWER THESE QUESTIONS, PERHAPS EVEN YOU WERE FOLLOWING ALONG WRITING DOWN THESE IDEAS AS TO THE MOST IMPORTANT LESSONS FROM ANY OR ALL OF THE PREVIOUS SESSIONS. IT IS 2:51. LET'S SAY WE START AGAIN AT 3:30. WE GO THROUGH THEM, PRIORITIZE, COME UP WITH ACTION ITEMS AND THEN SEND YOU TO THE CAMPUS SHUTTLES AND/OR YOUR WAITING TAXIS SO YOU CAN BET HOME AT A REASONABLE HOUR. MEET YOU BACK HERE AT 3:30. THANK YOU. I DON'T KNOW IF YOU -- AS YOU'RE SETTLING IN I DON'T KNOW -- ANY BLUES FANS IN THE HOUSE? ANYBODY LIKE BLUES, FOLK ROCK? ONE OF MY FAVORITE ARTISTS IS KETMO WHOSE PICTURE IS UP THERE. HIS GIVEN NAME WAS KEVIN MOORE. WAS KEVIN MOORE. THEN MUDDY WATERS THOUGHT HE WAS VERY TALENTED AND RENAMED HIM KETMO ONE MUCH HIS SONGS IS "YOU DON'T HAVE TO BE PER FEBRUARY YOU JUST NEED TO GIVE IT WHAT YOU GOT." SO YOUR FIRST QUESTION IS AN IMPORTANT FACT FROM YOUR GROUP THAT YOU GOT FROM ONE OF THE THREE SESSIONS OR PERHAPS YOU WERE SO FASCINATED THAT YOU GROUP COULDN'T DECIDE ON ONE. YOU WANT TO SHARE ANY OF THEM WITH ME? >> SO, NEW ONE WE LIKE WAS TALKING ABOUT, WE SPENT TIME TALKING ABOUT THE IMPORTANCE OF THE COMMUNITY AND HOW MANY OF THE QUESTIONS THAT WE HAD AND SOME OF THE HURDLE, IS THAT BARRIERS AND POSITIVE THAT WE HAD COULD HAVE BEEN MAYBE BETTER WORKED WITH. WHICH THEN BROUGHT IN THE RELIGION AND SPIRITUALITY DISCUSSION AS WELL ABOUT HOW SOME OF OUR OWN QUESTIONS IS WHAT WE DO WITH THIS INFORMATION. SHOULD THEN GO BACK TO THE ORIGINAL THOUGHT OF ENGAGING THE EFFECTIVE POPULATION IN THE FIRST PLACE TO ASK THEM HOW DO WE OPEN CORPORATE THESE INCREDIBLY IMPORTANT ISSUES INTO OUR WORK TO TRY TO HELP YOU. >> I DON'T HAVE -- I DON'T KNOW WHY -- I DON'T HAVE IT ON SLIDE SHOW SO I'M SHOWING THIS. WHAT I'VE WRITTEN DOWN IS, I HAVE TWO POINTS. START WITH STAKEHOLDERS, THE PEOPLE FROM COMMUNITIES WHO WANT TO HELP AND RETURN TO COMMUNITIES WITH RESULTS. WHAT ELSE? ANOTHER FACT FROM TODAY'S SESSION. YES, MA'AM. DO YOU HAVE THE MICROPHONE? THANK YOU. >> FROM DRENNA'S TALK ABOUT COG ANY SIEVE FUNCTION WHEN IT WAS ADDED TO THE -- WHEN IT WAS ADDED TO THE MODEL RACE AND ETHNICITY WASHED OUT THAT WAS EXTREMELY FASCINATING TO ME AND EXCITING THAT PERHAPS THESE OTHER VARIABLES THAT WE NEED TO TAKE INTO ACCOUNT IN OUR MODELS WE HAVEN'T BEEN TAKING INTO ACCOUNT AND I JUST -- THAT WAS EXTREMELY COMPELLING TO ME. CERTAINLY SOMETHING THAT I WANT TO LOOK AT A LITTLE MORE CLOSELY. >> I'LL WALK YOU THROUGH WHEN WE'RE DONE. I HAVE COGNITIVE FUNCTION, DRENNA IN PARENTHESIS, ADD TO THE MODEL AND SES FALLS AWAY, RETHINK PREDICTIVE VARIABLES AND CONSIDER MORE CLOSELY. PARDON? [ INAUDIBLE ] ANY OTHER -- YES, MA'AM? >> EILEEN SHARED THAT HE WORKS A LOT WITH PEOPLE WHO ARE LOOKING AT THE CELLULAR LEVEL, PATHOLOGISTS, I'M SORRY. AND RECOGNIZE THE IMPORTANCE OF THE PATIENT LEVEL SO IT'S NOT JUST ABOUT PATHOLOGY NOT JUST ABOUT BIOLOGY BUT ALSO LOOKING AT THE PATIENT LEVEL. >> CELLULAR EXPERTS, PATHOLOGISTS MUST CONSIDER PATIENT LEVEL AND COLLABVE APPROACH TO CARE, ENGAGE PATIENTS IN ALL DECISIONS. OKAY. ANYONE ELSE? LINDA? [ INAUDIBLE ] WE'RE ON THE FIRST PAGE. FIRST QUESTION. WHAT ARE THE IMPORTANT FACTS YOU GOT OUT OF TODAY'S SESSION. THEN WE'LL GET TO OTHER THINGS. LIKE DAVID LETTERMAN TOP TEN FACTS THAT, A, YOU DIDN'T KNOW. B, MADE YOU THINK TWICE. THAT KIND OF THING. THANK YOU. NIPPLES? THERE WERE ANY OTHER LESSONS THAT RESONATED WITH YOU THAT WERE YOUR FAVORITE. I'M JUST TRYING TO SUMMARIZE THE SECOND QUESTION. ANYTHING THAT ROSE UP IN YOUR GROUP OR YOU WROTE DOWN ON YOUR SHEET? [ INAUDIBLE ] SORRY. THAT'S THE WAY TO WAKE UP. [ LAUGHTER ] [ INAUDIBLE ] >> OKAY. SARAH. [ NOT ON MICROPHONE ] >> MULTIPLE ENTRY POINTS. OTHERS, ANYTHING ELSE? ANYONE? NO? >> THE POINT THAT WAS BROUGHT OUT THAT WE SHOULD INCLUDE AS HEALTH SCIENTISTS RELIGION AND SPIRITUALITY. I THINK OLGA BRINGS UP REALLY GOOD POINT THAT REGARDLSS OF RELIGION AND SPIRITUALITY, YES, WE SHOULD INCLUDE IT BUT IT'S ALSO A VALUE THAT PEOPLE HOLD NEAR AND DEAR TO THEIR HEARTS. AND WE SHOULD BE AWARE AS RESEARCHERS REGARDLESS OF WHETHER YOU'RE SPIRITUAL, WHETHER YOU HAVE RELIGIOSE TEE IN YOUR MAKE UP. OR WHETHER YOU'RE SPIRITUAL IN NATURE. THAT'S SOMETHING THAT I THINK IS A CLUE TO WHAT WE'RE TALKING ABOUT HERE TODAY. >> HEALTH SCIENTISTS MUST ADDRESS SPIRITUALITY. T ELSE? I'LL SHOW YOU ALL THESE THINGS. >> HOW YOU'RE DEFINING SELF MANAGEMENT. >> THERE ARE MULTIPLE DEFINITIONS OF SELF MANAGEMENT. I MISSED THE REST. >> RIGHT. THE IMPORTANT -- CONDUCTING YOUR RESEARCH THAT YOU DEFINE, HOW YOU'RE DEFINING SELF MANAGEMENT WHAT'S INCORPORATED. DEFINITION OF SELF MANAGEMENT FOR THIS STUDY IS, A, B, C. >> GREAT. ANYTHING ELSE? YES, MA'AM. >> WE TALKED ABOUT, WE DIDN'T HAVE NAME FOR IT BUT THIS THING, WE THOUGHT WAS IMPORTANT THAT COULD BE A KEY IN THE SLIDE, KEY FEATURE THAT MAYBE POSSIBLY NECESSARY FOR A LOT OF PEOPLE TO GET AT THIS CORE EMOTION, THIS VALUING OF THEMSELVES TO BE ABLE TO -- OR OTHER SKILL SETS AND BEHAVIORS. IN ORDER TO MAINTAIN THIS NEW LIFESTYLE, THIS NEW WAY OF BEING THAT THERE SOME ARE SORT OF CORE ELEMENT THAT NEEDS TO BE TOUCHED ON SOME OF THE NARRATIVE, DISCUSSION TOUCHED ON THAT, SOME OF THE WORK TOUCHED ON THAT, THAT HUMAN CONNECTION. WE DON'T KNOW WHAT IT IS. WE'D LIKE TO SEE MORE WORK ON DEFINING WHAT THAT IS. >> ANYONE ELSE? >> ONE IMPORTANT POINT, I'M NOT GOING TO SAY IT WAS MY MOST IMPORTANT POINT BUT I DO THINK IT WAS WELL STATED THAT WE HAD LOT OF DISCUSSION ABOUT THE SPIRITUALITY AND RELIGION AND I THINK WE HAVE AN EXPERT HERE THAT DID DISCUSS THE NEED TO UNDERSTAND THE DEFINITION OF WHAT THAT IS WHEN DO YOU CONDUCT YOUR RESEARCH AND ACTUALLY HAD A MEASURE THAT SEEMED TO BE FAIRLY RELIABLE AND VALID THAT IS WORTH LOOKING AT. I JUST THINK THAT WAS IMPORTANT POINT THAT WAS BROUGHT UP SHOULD BE CAPTURED. >> OKAY. LAST CALL. WHAT LESSONS HAVE YOU -- THAT YOU DIDN'T LIST ALREADY THAT YOU FIND MOST USEFUL PERSONALLY, FOR YOUR OWN WORK. THAT YOU DIDN'T NECESSARILY LIST ALREADY. YES, MA'AM. I'M SORRY, OLGA. [ INAUDIBLE ] >> THAT I DIDN'T TELL BEFORE THAT IN MANY CASES USING TEXT MESSAGES IS MORE BENEFICIAL THAN FACE TO FACE BECAUSE FACE TO FACE INTER-ACTION HAS MORE EMOTIONAL LANDSCAPE SO WHEN YOU LIMIT -- IN SOME CASES IT IS BENEFICIAL TO LIMIT IT JUST AS INFORMATION EXCHANGE. I DIDN'T REALIZE IT BEFORE. SOCIAL MEDIA IS VERY POWERFUL IN THIS CASE. >> ANYBODY ELSE? [ INAUDIBLE ] >> OKAY. THEN LADY BEHIND YOU HAD ONE. >> JUST WANTED TO SAY THERE IS REALLY GREAT MODEL CALLED THE RESILIENCE MODEL, SOCIETY. TAKES INTO ACCOUNT ALL THESE DIFFERENT LEVELS OF OUR LIVES BY JESSICA GILL AT NIH AND SARAH WHO IS AT HOPKINS. >> RESILIENCE MODEL SOCIETY TO SELL. GOT IT. >> ONE TAKE AWAY FOR ME WAS REINFORCEMENT OF THE HOLISTIC APACH TO CARE. JUST HAPPY TO HEAR THE WORDS BIOPSYCHOSOCIAL BEINGS KNOWING THAT ENCOMPASSES MORE THAN JUST THE SPECIFIC ILLNESS AND THAT THERE IS A LOT MORE THAT GOES ALONG WITH THAT. I DID WANT TO SAY THAT DISCUSSION WAS THAT PREJUDICE DOES PLAY A ROLE AND IMPACTS CARE. THAT IT'S VERY IMPORTANT TO UNDERSTAND THE PERSON WHO IS RECIPIENT OF YOUR CARE SO THAT WAY YOU CAN DELIVER BETTER CARE, I WOULD SAY. >> I GOT THE BIOPSYCHOSOCIAL BEINGS. I DON'T KNOW ABOUT THE SECOND PART, I WAS TYPING. THE PREJUDICE. >> NO. WEN YOU'RE SAYING THAT USING THE WORD BIOPSYCHOSOCIAL REINFORCES MY BELIEF AND HOLISTIC APPROACH TO CARE BUT NOT TO FORGET THE PIECE OF YOUR OWN PREJUDICE WHEN YOU ARE DEALING WITH WHOMEVER YOU'RE CARING FOR THAT THAT COULD BE AN IMPEDENESS TO DELIVERING THE BEST CARE. I THOUGHT THAT WAS A GREAT POINT THAT WAS RAISED BY THE GENTLEMAN WHO SPOKE ABOUT THE HIV POSITIVE COMMUNITY. >> GOT IT. >> MORE PROPOSAL THAN OBSERVATION. I START MY PRESENTATIONS USUALLY WITH [ INAUDIBLE ] I THINK THIS IS GREAT TRADITION THAT COMES FROM AGES BEFORE US PEOPLE -- LIKE 30 SECONDS OR ONE MINUTE MAYBE PATIENT OR ENERGY BAR IS PROBABLY AWESOME. [ LAUGHTER ] >> ANYBODY ELSE? OKAY. IS THERE ANYTHING YOU HAVEN'T MENTIONED THAT YOU THINK -- [ LAUGHTER ] I DON'T KNOW, THAT COULD BE THE POWER OF JEFF OR DAVE. IF IT IS, THANK YOU. IS THERE ANYTHING THAT YOU THINK IS USEFUL TO OTHERS IN THE ROOM OR ANYTHING THAT YOU HAVEN'T MENTIONED THAT YOU WANT TO BE CERTAIN TO SHARE WITH PEOPLE BACK HOME? [ INAUDIBLE ] OKAY. YES, MA'AM. >> I DON'T WANT TO MISS THE OPPORTUNITY TO TALK ABOUT THE IMAGING, THE BRAIN IMAGING THAT WE TALKED ABOUT EARLIER IN THE DAY. I THINK THAT WAS IMPORTANT IT REALLY GOT DOWN TO THE BASICNESS OF SELF MANAGEMENT. I THINK THAT IS REALLY IMPORTANT IN MY BIAS AS CENTER DIRECTOR AT NIR. >> THANK YOU DOCTOR TEAM LEAD. ANYTHING ELSE? SOMETHING ABOUT HEALTH LITERACY. [ INAUDIBLE ] I DIDN'T HEAR IT. GOT IT. >> WE TALKED ABOUT THE SPECTRUM OF DIFFERENT ACTIVITIES OR DIFFERENT PHASE OF PERSON FROM SELF AWARENESS TO SELF MONITORING TO SELF MANAGEMENT TO SELF HAPPINESS, I GUESS. I THINK IT IS VERY IMPORTANT THAT IN OUR RESEARCH WORLD NOT FORGET ABOUT OUR INTUITIVE PARTS OF SELF AWARENESS EVEN THOUGH SOMETIMES IT'S VERY DIFFICULT TO MEASURE. THE END OF THE SPECTRUM IS RESILIENCE AND THE STATE OF LIKE HIGHEST STATE OF BEING WHERE WE MOVING TOWARD. FIVE CHRONIC DISEASES GOAL. IS THIS PERSON'S GOAL JUST TO BE ABLE TO WASH THEIR HAIR SORE IT TO MANAGE ALL THESE -- THAT I THINK WOULD BE VERY COMPELLING TALK IN THE FUTURE TO TALK ABOUT PATIENT-DIRECTED GOALS EVEN IF THEY DON'T HAVE ANYTHING TO DO WITH THE PERSON'S CHRONIC DISEASE AND SEE WHAT HAPPENS. REGARD GOES OF AGE WHICH I WAS VERY SURPRISED BY. SO I THINK THAT THAT WOULD BE REALLY INTERESTING TALK AS WELL TO INCLUDE FUNCTION IN THE REALM OF SELF MANAGEMENT HOW THAT SELFMENT OCCASION WITH FUNCTIONAL DEFICITS JUST THE INTERPLAY THERE. BECAUSE OF HOW IMPORTANT IT IS. ALSO HOW HARD IT IS TO CAPTURE THAT GROUP OF PEOPLE BECAUSE THEY CAN'T PERHAPS COME TO INTERVENTION AS EASILY. OR COME TO RESEARCH STUDY THEY'RE MUCH MORE HOME BOUND. THESE ARE PEOPLE THAT ARE COSTING THE MOST AND MOST ISOLATED. I THINK FUNCTIONAL STATUS EVEN REGARDLESS OF AGE WOULD BE INTERESTING PIECE TO SELF MANAGEMENT IN THE FUTURE. I THINK THAT WAS -- THOSE WERE THE TWO BIG PIECES THAT OUR GROUP CAME UP WITH AS FAR AS RECOMMENDATION. AND DISABILITY. FUNCTIONAL STATUS/DISABILITY. >> I THINK IT'S BEEN MENTIONED AS ONE OF THE MOST IMPORTANT ITEMS I THINK SOMEONE HELPED ABOUT COLLABORATION. BUT I THINK WE TALKED A LITTLE BIT ABOUT USING THE PICORI MODEL, ADDING TO YOUR RESEARCH TEAM HAVING PATIENTS THAT ARE SELF MANAGING AS PART OF THE RESEARCH TEAM AND INCLUDING THE COMMUNITY. JUST BROADENING OUR MODEL OF WHAT WE THINK ABOUT THE RESEARCH TEAM TO BE AND WHO IS GOING TO PARTICIPATE IN DEVELOPING PROPOSALS ULTIMATELY SOME OF THESE PATIENT DIRECTED AREAS THESE HARDER CONSTRUCTS TO MEASURE OR INCORPORATE INTO YOUR REGLENN PICORRI HAS A MODEL THAT IS USING A LOT OF THESE DIFFERENT TECHNIQUES. >> WE HAD ONE, A RECOMMENDATION WHICH IS TO GET THE EAR OF POLITICIANS, SENATORS, TO CONTINUE TO RECOGNIZE THE IMPORTANCE OF RESEARCH IN THIS AREA AND IN TURN TO GET CONTINUED FUNDING IN THIS AREA OF RESEARCH. >> BECAUSE OTHERWISE I WOULD NOT BE ALLOWED TO PURSUE THIS KIND EVER RESEARCH AT MY INSTITUTION. >> I'M NOT SURE THIS IS A RECOMMENDATION. I'M LOOKING FOR NEED BACK. I WAS TAKEN TODAY BY THE DIVERSITY OF AREAS THAT PEOPLE ARE RESEARCHING. AND THAT PEOPLE WERE TALKING ABOUT STORYTELLING AND COGNITION AND SLEEP, WHOLE BUNCH OF DIFFERENT THINGS THAT ALL IMPACT. I THINK IT'S CRITICAL RESEARCH BUT THEN I THINK ABOUT WHEN WE GET TO INTERVENTION IT MUDDLES A LITTLE BIT WE NEED TO THINK MORE ABOUT HOW DO WE REALLY FIGURE OUT WHAT WORKS, I KNOW OUR GROUP TALKED A LOT ABOUT KIND OF BEING A LITTLE BIT MORE PRAGMATIC AND PARTICIPATORY RESEARCH TO GET BETTER IDEAS. I'M NOT REALLY SURE WHERE WE TAKE THIS IN TERMS OF DOING GOOD RESEARCH BUT ALSO DOING THINGS THAT ARE IMPACTFUL BECAUSE I TOOK HOME THAT ANY ONE THING PROBABLY ISN'T GOING TO BE ENOUGH. JUST UNDERSTANDING THAT ALL OF THESE DIFFERENT THINGS ARE IMPORTANT. >> I WANTED TO FOLLOW UP ON WHAT MARVIN WAS SAYING. I GUESS IF A BASIC RESEARCH MECHANISM PEOPLE ARE TALKING ABOUT THINGS THAT ARE MUCH MORE CLINICAL AND MORE IN THE USUAL WHEEL HOUSE OF THE INDIVIDUAL INSTITUTE. I GUESS ONE QUESTION IS, IN TERMS OF YOUR TAKE AWAY WHAT ARE YOU TRYING TO GET AT? ARE YOU TRYING TO GET AT THE REALLY BASIC KINDS OF PROCESSES THAT YOU COULD LOOK AT IN A LOT OF DIFFERENT CONTEXTS OR ARE YOU THINKING ABOUT BASIC THINGS, MAYBE WITH A LARGE NUMBER OF CONTEXT, BUT TRYING TO THINK ABOUT WHAT THE DIMENSIONS EVER THOSE THINGS WOULD BE. >> WHAT IS NICE ABOUT OPMED IS THAT ONE CAN -- BECAUSE OF NIH'S STRUCTURE -- ONE CAN CONDUCT BASIC RESEARCH ACROSS A VARIETY OF CHRONIC -- ACROSS CHRONIC CONDITION. SO THE SLEEP, ENDEMIC STRESS AND THEN SPECIFIC DISEASE MEASURES WHETHER THE VIRAL LOAD, A2C3, ASTHMATIC, NEED FOR VENTILATION. THAT THE DISEASE SPECIFIC MEASURES ARE CERTAINLY CAN BE INCLUDED BUT WHAT WE DON'T KNOW IS -- WHAT WE SAW THROUGHOUT MULTIPLE PRESENTATIONS WERE ALL OF THESE VARIABLES. HOW DO THESE THINGS HAPPEN. HOW DOES SLEEP AND ITS RESTORATIVE NATURE INFLUENCE SUGAR LEVELS, COGNITIVE FUNCTIONING. UGH SLEEP AND DON'T HAVE THE HOW DOES -- IF YOU DON'T GET RIGHT BREAKFAST THEN IT MESSES UP YOUR SUGAR AND SO WHAT ARE THE DIFFERENT PIECES THAT INFLUENCE LINEBACKERS CRASHING IN THE MIDDLE OF THE DAY. PERHAPS BECAUSE OF A SUGAR DROP OR A SUGAR HIGH BUT ALSO PERHAPS BECAUSE HE DIDN'T GET ENOUGH SLEEP AND SO THE SYNAPSES ARE NOT FIRING, NOT NECESSARILY OF SUGAR BUT ALSO BECAUSE OF SLEEP. THAT'S A REAL SLOPPY EXAMPLE. THOSE PROCESSES AND WHAT DO THE -- WE TALKED ABOUT SOCIOECONOMIC CONDITIONS, RACE, ETHNICITY. WE DIDN'T MENTION SO MUCH ABOUT -- TALKED SOMEWHAT ABOUT THE STRESS OF MANAGING ONE OR MORE CHRONIC CONDITIONS. WE DIDN'T NECESSARILY TALK ABOUT THE STIGMA OR ASSOCIATED WITH BEING SOMEONE. WITH CERTAIN CONDITIONS THAT ARE REDUCED BUT STILL EXIST. PEOPLE WHO SOME PEOPLE BLAME DIABETICS OR THEIR LACK OF CONTROL OVER THEIR OWN SUGAR. ONE COULD GO ON. IT'S LOOKING AT THOSE IN DIFFERENT POPULATIONS CAN TELL US MORE ABOUT THE HUMAN CONDITION. APPLY SOMETHING THAT YOU LEARN WITH TEENS AND TYPE ONE DIABETES AMONG YOUNG MSM IN THE BRONX OR VICE VERSA. >> TO PIGGYBACK ON THAT, SOMETHING I MEANT TO BRING UP IN MY TALK DIDN'T MAKE IT ON MY SLIDES. CREATIVE WAYS TO LOOK AT SOME OF THE UNDERLYING MECHANISMS ACROSS -- SOME OF THE WORK THAT WE'RE DOING WITH OUR CENTER DIRECTORS TO TRY TO COME UP WITH SOME KEY MEASURES, SOME KEY CONCEPTS THAT WE THINK COULD BE MEANINGFUL ACROSS MULTIPLE CONDITIONS, WE ALSO HAVE INCORPORATED NEW CENTERS ON SELF MANAGEMENT AND THERE'S EVEN SOME WORK GOING ON AS WELL TO THINK ABOUT HOW DO WE MAKE SOME SORT OF REPOSITORY OR SOME SORT OF WAY OF COMBINING DATA FROM ALL OF THESE STUDIES THAT HAVE KEY ELEMENTS. WE CAN'T ACTUALLY ANSWER THOSE QUESTIONS BUT WE'RE SORT OF DOING IT WITH OUR HANDS TIED BEHIND OUR BACK BECAUSE WE DON'T HAVE FUNDING MECHANISM TO DO THAT TO TAKE 30 DIFFERENT PILOT STUDIES FROM THE LAST TEN YEARS AND PUT THEM TOGETHER IN DATA SET TO SAY. >> EXCELLENT. OKAY. >> OPRY LATE NOTE ONE OF OUR RECOMMENDATIONS WAS TRYING TO CREATE MORE OF THESE FUNDING OPPORTUNITIES THAT CUT ACROSS INSTITUTES SO THAT SOME OF THE BASIC PRINCIPLES OF SELF MANAGEMENT OR BASIC BEHAVIORAL MECHANISMS CAN BE EXAMINED ACROSS DISEASES OR ACROSS CONDITIONS. [ INAUDIBLE ] [ NOT ON MICROPHONE ] >> OKAY. [ NOT ON MICROPHONE ] >> THAT'S GREAT, THANK YOU. C.J.? >> I DIDN'T HAVE ANYTHING. I WAS ASKING IF THERE WAS ANYBODY ELSE THAT HAD SOMETHING. OLGA. >> ONE OF THE THINGS THAT I THINK IS VERY IMPORTANT HERE FOR NIH FOR US TO EMBRACE ALL THE SOURCES OF KNOWLEDGE, BECAUSE SOMETIMES -- I THINK WE ARE MOVING TOWARD THIS DIRECTION BUT IN ADDITION TO SCIENTIFIC KNOWLEDGE WHICH STAYS IN THE LAB OR IN CONTROLLED STUDIES WE ALSO HAVE LESS PRACTICES OUT THERE THAT HELP PEOPLE. MAYBE UNTIL WE TEST SOME HYPOTHESIS IN A RANDOMIZED CLINICAL TRIAL WE CAN USE THOSE PRACTICES THAT COME FROM GENERATIONS BEFORE US. IF WE KNOW THAT PEOPLE WILL HELP OR WERE ABLE TO USE DIFFERENT CHRONIC CONDITIONS BEFORE WE CAME HERE. >> GREAT. >> ANYBODY ELSE? >> HEAR FROM THE PERSON THAT WAS GOING TO BE DISCUSSING MEASUREMENTS. >> RIGHT. >> SO ONE OF THE THINGS THAT HOPEFULLY SHE WAS GOING TO BRING TO US IS THE NEED FOR MEASUREMENTS AND SELF MANAGEMENT I KNOW THE GROUP THAT I WAS SPEAKING TO OR CUT IN ON, IF YOU WILL, WE WERE TALKING ABOUT THE NEED FOR MEASUREMENT AND I BROUGHT UP THE FACT THAT THERE ISN'T REALLY AN OVERALL SELF MANAGEMENT MEASURE OUT THERE THAT PEOPLE ARE USING TODAY AND I THINK THAT IS SOMETHING THAT IS SORELY NEEDED IN THIS AREA IS GENERAL OVERALL SELF MANAGEMENT MEASUREMENT NOT SOMETHING THAT DISEASE SPECIFIC. >> I CAN READ YOU THROUGH, UP FORTUNATELY CANNOT MAKE THIS SLIDE SHOW APPEAR ON THE SCREEN. I HOPE I DON'T BRING THE OTHER SCREEN DOWN AGAIN. I CAN READ YOU THROUGH THIS LIST OR I CAN SEND YOU A PDF YOU CAN SEND COMMENTS. THE ANSWER IS B. WHAT I DO NEED TO TELL YOU ASIDE FROM GREAT AND HUMBLE THANKS FOR A TERRIFIC, STIMULATING, ENJOYABLE DAY, IS ASIDE FROM BEN, SAFE TRAVEL HOME. IF YOU ARE AN EXPERT PANELIST, IS THAT WE ARE SPONSORING, SCAN YOUR RECEIPTS WHEN YOU GET TO WORK AND SEND THEM TO ME STAT. IT'S THE END OF THE FISCAL YEAR. AND WE HAVE ONLY A FEW DAYS TO GET THE FUNDS INTO YOUR DIRECT ACCOUNT. I CAN SEND YOU THE THINK TO THE BLOGS BECAUSE LINDA IS LATEST TO ROLL OUT THIS MORNING AND YOU KNOW WHERE TO FIND ME. I'LL BE HERE IF YOU NEED ANYTHING ON YOUR WAY OUT AND YOU KNOW WHERE TO FIND ME BY E-MAIL OR PHONE IF AND WHEN YOU NEED ME LATER ON. THANK YOU ALL VERY MUCH. [APPLAUSE]