Welcome to the Clinical Center Grand Rounds, a weekly series of educational lectures for physicians and health care professionals broadcast from the Clinical Center at the National Institutes of Health in Bethesda, MD. The NIH Clinical Center is the world's largest hospital totally dedicated to investigational research and leads the global effort in training today's investigators and discovering tomorrow's cures. Learn more by visiting us online https://clinicalcenter.nih.gov I'M SUE AND I'M THE CLINICAL DIRECTOR AT NINR. ON BEHALF OF NINR AND THE NURSING DEPARTMENT I WELCOME YOU ALL TO GRAND ROUNDS. IN CASE YOU DIDN'T KNOW THIS IS NURSE'S WEEK AND THEREFORE WE'RE REALLY EXCITED TO BRING -- PRESENT A COLLABORATIVE EVENT TODAY. OUR FIRST SPEAKER IS DR. JESSICA SKILL. SHE WAS RECRUITED TO A PREDOC FOR RALPH TRAINING PROGRAM AND SHE COMPLETED HER PhD AT THE JOHN HOPKINS SCHOOL OF NURSING AND CAME TO NIH IN 2007 FOR A POSTDOC FELLOWSHIP. SHE THEN TRANSITIONED. HER RECENT AND ONGOING RESEARCH FOCUSES ON CONCUSSIONS, TRAUMATIC BRAIN INJURY AND PTSD. DR. GIL HAS RECEIVED THE PRESIDENTIAL EARLY CARRERA -- AWARD. SHE SERVES ON SEVERAL EDITORIAL BOARDS. OUR SECOND SPEAKER TODAY IS DR. ELISA BROOKS WHO IS A PROGRAM SPECIALISTS. SHE RECEIVED HER BS IN BIOBEHAVIORAL HEALTH WITH HONORS FROM PENN STATE UNIVERSITY IN 2010. SHE EARNED HER PhD FROM THE UNIVERSITY OF MARYLAND SCHOOL OF PUBLIC HEALTH AND BEHAVIORAL AND COMMUNITY HEALTH IN MAY 2015. SHE THEN SERVED AS A POSTDOC FELLOW IN THE NURSING DEPARTMENT FROM JUNE THROUGH DECEMBER 2017 WHERE SHE ADVANCED TO HER CURRENT PROGRAM. DR. BROOKS ALSO SERVES AS A MENTOR. IN THE IMPLEMENTATION AND MONITORING OF RESEARCH PROTOCOLS. DR. BROOKS RESEARCH FOCUSES ON BEHAVIORAL TREATMENT. QUALITATIVE AND MIXED METHODS TO UNDERSTANDING CHRONIC HEALTH BEHAVIOR -- AND EXPLORING THE EXPECTS OF ALCOHOL ON THE ORAL AND GUT MICRO BUY UM. SHE SERVES ON THE UNIVERSITY OF MARYLAND BOARD OF GOVERNORS. SHE IS AN ACTIVE MEMBER OF THE RESEARCH SOCIETY OFF ALCOHOLISM AND NOW LET'S WELCOME DR. GIL. THANK YOU. >> GREAT. THANK YOU SO MUCH SUE FOR THAT VERY KIND INTRODUCTION AND THANK YOU FOR EVERYONE WHO'S ATTENDING AS WELL AS THOSE VIA TELECAST. TODAY I GET THE PRIVILEGE TO TALK ABOUT THE FUTURE DIRECTIONS FOR THE SYMPTOM SCIENCE CENTER WHICH IS BEING DEVELOPED HERE. SO TODAY I'M GIVING THIS PRESENTATION ON HIS BEHALF. IT'S AN EXCITING TIME TO BE ABLE TO TALK ABOUT THIS ESPECIALLY IN THE CONTEXT OF NURSE'S WEEK. THINKING ABOUT THIS PRESENTATION AND WHERE SYMPTOM SCIENCE IS GOING AND HOW WE CAN ORIENT THE RESEARCH. I STARTED THINKING ABOUT SOME OF MY FAVORITE QUOTES. HOW NURSES CARE FOR PATIENTS AND IT'S THIS CARE THAT COMMITTEES US TO DOING BETTER RESEARCH SO WE CAN IDENTIFY FACTORS THAT IMPAIR THEIR HEALTH AND WELL-BEING INCLUDING THE DEVELOPMENT OF SYMPTOMS BOTH ACUTELY AS WELL AS CHRONIC CALLLY. ALSO TO UNDERSTAND WAYS THAT WE CAN INTERVENE TO IMPROVE THE HEALTH AND WELL-BEING AS WELL AS SOCIETY AT LARGE SO WE CAN HAVE A POLICY IMPACT. AND SO PUTTING ALL OF THIS TOGETHER WE HAVE THE POWER OR THE COMMITMENT TO CARING FOR THE PATIENTS THAT WE SEE. WE NOW ARE USING ADVANCED METHODS. THAT ALLOW US TO ADDRESS INNOVATIVE QUESTIONS AND DO THE MOST POWERFUL NURSING THAT WE CAN. AND IT'S ALSO OUR BELIEF THAT COLLABORATIONS ARE THE WAY TO MOVE THIS SCIENCE FORWARD SO WE LOOK FORWARD TO WORKING WITH ALL OF YOU HERE TODAY ON CAMPUS AS WELL AS LINKING WITH EXTRA MURAL COLLABORATION. SO WE RECENTLY CELEBRATED OUR 30th ANNIVERSARY. WE FOCUS REALLY ON THE EXPERIENCES OF PATIENTS AND SPECIFICALLY THE SCIENCE THAT UNDER LIES SYMPTOM DEVELOPMENT AND MAINTENANCE AND HOW WE CAN IMPROVE QUALITY OF LIFE SO THESE ARE FOUR FUNDAMENTAL PILLARS WITH HOW WE DO THE SCIENCE HERE ON THE NIH CAMPUS. WITH OUR INTERMURAL FOCUS SPECIFICALLY USING ADVANCED LABORATORY METHODS TO UNDERSTAND. TO REALLY UNDERSTAND HOW THESE SYMPTOMS WERE DEVELOPING WHY THEY ARE DEVELOPING AND HOW WE CAN TREAT THEM IN THE MOST OPTIMAL WAYS. WE LOOK AT UNDERLYING BEHAVIORAL MECHANISMS AS WELL AS MOLECULAR MECHANISMS. TO REALLY UNDERSTAND THE VARIABILITY THAT CONTRIBUTES TO THE PATIENTS THAT WE SEE COMING THROUGH. TO DEVELOP A COMPREHENSIVE UNDERSTANDING OF THE PATIENT SO THAT WE CAN PROVIDE OPTIMAL CARE. AND THIS IS OUR ORGANIZATIONAL STRUCTURE. THE RECENT BRANCH THAT WAS ADDED WAS HERE AT THE SYMPTOM SCIENCE CENTER. AND THE SYMPTOM SCIENCE CENTER WILL BE A NEXUS THAT WILL ALLOW US TO DO MORE INTEGRATIVE SCIENCE. TO DEVELOP COURSE THAT WILL ALLOW US TO LOOK AT THE COMPLEXITY OF SYMPTOM PRESENTATION AND WHAT IS IMPORTANT IS WE'RE NOT LOOKING AT ONE SPECIFIC DISEASE BUT SETS OF SYMPTOMS THAT OFTEN COME TOGETHER. THIS GIVES US A UNIQUE ADVANTAGE BECAUSE WE CAN IDENTIFY THINGS THAT WE CAN CHANGE WITH INTERVENTIONS AND HELP PROVIDE SOME FUNDAMENTAL INSIGHTS NOT JUST THE DISEASE PROCESSES BUT ALSO THE SYMPTOMS AND WHAT ALL NURSES KNOW IS THAT IS WHAT BRINGS PATIENTS INTO THE CLINIC. IT'S SYMPTOMS THAT MOTIVATE THEM TO COME IN TO GET CARE AND COMMIT THEM TO INTERVENTIONS TO IMPROVE THEIR HEALTH. SO THE OVER-ALL GOAL OF THE CENTER IS TO DEVELOP A CENTER A FOCUS CENTER TO PROMOTE DIVERSITY AND DEVELOP PERSONALIZED APPROACHES ACROSS DIFFERENT DISORDERS AND DISEASES AND TO LINK THE RESEARCHERS ACROSS THE CAMPUS AND SO YOU CAN SELE OH DOWN HERE AT THE BOTTOM AND THIS WAS A SLIDE FROM ONE OF OUR RECENT PRESENTATIONS. WE DEVELOPED A SYMPTOM SCIENCE MODEL AND THIS MODEL ALLOWS US TO HAVE A FOUNDATION TO DO THE SCIENCE THAT WE'RE PROPOSING. THE BEGINNING OF THIS MODEL IS THAT THERE IS A COMPLEX SYSTEM WHERE THE PATIENT NEEDS INTERVENTION OR ASSESSMENT. THAT SYMPTOM IS CHARACTERIZED. THAT CAN INCLUDE ANYTHING FROM PATIENT REPORTED SYMPTOMS OBJECTIVE MEASURES SUCH AS SLEEP. FROM THAT TYPE OF INVESTIGATION WE WOULD BE ABLE TO IDENTIFY SOME BIOLOGICAL CORE LET S. WE THEN WOULD USE THOSE INSIGHTS TO MODIFY EXISTING INTERVENTIONS TO REDUCE THE SYMPTOM BURDEN THAT IS THE PATIENT IS IDENTIFYING. WHAT IS REALLY IMPORTANT IS THAT THIS IS BI-DIRECTIONAL IN THAT THE INDIVIDUAL WOOF THEN CONTINUE TO GO THROUGH THE MODEL UNTIL THE SYMPTOMS WERE RESOLVED ALLOWING US TO IDENTIFY DIFFERENT MECHANISMS THAT RELATE TO RECOVERY. MOST INDIVIDUALS WILL NOT HAVE A FULL RECOVERY FROM ONE SYMPTOM OR TWO SYMPTOMS BUT THAT WE NEED TO LOOK AT THEM IN A MORE COMPREHENSIVE MANNER AND OVER A LIFETIME. AND SO THE WAY THAT WE WANT TO LOOK AT THIS IS HOW CAN WE PERSONAL -- PERSONALIZE THE CARE USING THIS MODEL TO OVER-ALL IMPROVE THE PERSONALIZATION OF THE CARE THAT WE PROVIDE TO PATIENTS. THIS IS THE MOST IMPORTANT AND I THINK THIS IS ONE OF THE NURSING ADVANTAGES IN THE WAY THAT WE SEE PATIENTS. WE WANT TO IMPROVE THEIR HEALTH AND WELL-BEING SO TO UNDERSTAND THEM IN THE MOST COMPLEX WAY GIVES US A COMPREHENSIVE WAY TO ADDRESS THESE ISSUES AND PROVIDE SOME NOVEL FOUNDATIONS FOR FUTURE RESEARCH. SOME OF THE THINGS THAT THE SSC WILL PROVIDE IS FIRST THE INTEREST DISCIPLINARY RESOURCE SUCH THAT THE INFRASTRUCTURE THAT I'LL TALK ABOUT WITHIN THIS CENTER. IT PROVIDES COLLABORATIVE OPPORTUNITIES TO LOOK AT SYMPTOMS AND THE BIAS AROUND SOME OF THE SYMPTOMS AS WELL AS THE MECHANISMS THAT RELATE TO SYMPTOMS. TO ADDRESS THESE ISSUES IN THE BEST WAY. LOOKING AT COMPLEX SYMPTOM CLUSTERS. I'M HOPING IN THE NEXT SIX MONTHS I WILL BE ABLE TO PROVIDE THEY. GETTING A LOT OF INFORMATION ON THE PATIENT AND THEN TRANSLATE IT INTO SOMETHING THAT COULD BE UNDERSTANDABLE AND TO MAKE RESEARCH GOALS AND HYPOTHESIS. MAY BE RELATED TO IMAGING OR BIOMARKERS BUT WHAT WE WANT TO DO IS PUT ALL OF THOSE TOGETHER TO BEST UNDERSTAND IT. WE'RE ALSO LOOKING TO SEE HOW WE CAN OVER-ALL IMPROVE PATIENT QUALITY OF LIFE AND THAT IS WHY WE PICKED SYMPTOMS TO FOCUS ON FIRST. WE ALSO KNOW THAT WE HAVE AN IMPACT ON THE SYMPTOMS SO, THAT IS THE FUNDAMENTAL FOCUS OF THE CENTER. AND SO SOME OF THE CORE COMPONENTS IS THAT THE VALUES THAT WE HAVE ARE TO ENCOURAGE SELF-ASSEMBLY AROUND A COMMON SYMPTOM. ALSO TO LOOK AT SYMPTOM PROTOCOLS. TO CREATE SHARED RESOURCES SO WE CAN UNDERSTAND SYMPTOMS IN A MORE COMPREHENSIVE WAY USING SIMILAR METHODS. TO GET OBJECTIVE INFORMATION THAT WE CAN USE TO UNDERSTAND THE SYMPTOM ITSELF AND ALSO TO DESIGN INTERVENTIONS. WE'RE ALSO LOOKING TO DEVELOP CORE VARIABLES AND MEASURES AND COMMON DATA ELEMENTS ACROSS THIS CENTER AND ALSO ACROSS NIH. LASTLY, THE FOCUS IS TO DISCOVER ANSWERS TO PREVIOUSLY UNKNOWN PATTERNS AND TO REALLY ADDRESS THE COMPLEXITY THAT WE SEE IN THE PATIENT. NOT JUST LOOKING AT ONE SYMPTOM BUT A COMBINATION OF SYMPTOMS. WITHIN THE CENTER THERE WILL BE A CLINIC. CONDUCTING A COMPREHENSIVE APPROACH. THE FIRST FOCUS OF THE PROTOCOL IS LOOKING AT FATIGUE AND ALSO RELATIONSHIPS TO SLEEP. SO I'LL PROVIDE A TEMPLATE. AND THIS IS JUST THE START OF WHERE WE'RE AT. FATIGUE IS THE START. WE PLAN TO PROGRESS TO ADDITIONAL SYMPTOMS. KNOWING THAT FATIGUE IS A STABILITY POINT. IT'S NOT GOING TO BE ONE SYMPTOM BUT A SET OF SYMPTOMS AND SEEING HOW THEY INTEREST RELATE AND RESPOND TO INTERVENTIONS. OUR LABORATORY IS UNIQUE. IN THAT WHAT WE DO IN OUR LAB IS WE DON'T FOCUS ON ONE TYPE BUT WE HAVE THE ABILITY TO GO ACROSS DIFFERENT PARADIGMS TO UNDERSTAND HOW GENETIC PREDISPOSITION -- BECAUSE WHAT WE KNOW IS THAT ALL OF THESE BIOLOGICAL VARIABLES HAVE INNER RELATIONSHIPS AND LIKELY THIS COMPLEXITY IS UNDERLYING. IS A NOT DI-- IT ALLOWS US TO GO ACROSS DIFFERENT PARADIGMS AND TO MAKE MARKS THAT WE NEED SO FOR EXAMPLE WHAT WE'LL DO IS WE WANT TO BE ABLE TO 90% PREDICT THAT PATIENTS WILL HAVE SLEEP PROBLEMS AFTER A HEAD INJURY AND THE FUNDAMENTAL QUESTION THAT WE'VE CROSS ALL OF THE INVESTIGATORS IN THE LAB IS WHAT IS THE INDIVIDUAL VARIABILITY THAT CONTRIBUTES TO DEVELOPMENT OF THE SYMPTOMS ESPECIALLY ACUTELY AS WELL AS THE LONG-TERM SYMPTOMS AND THE COMPLEX SYMPTOMS THAT WE OFTEN SEE IN PATIENTS. AND ALSO WITHIN LEO'S WHO OFTEN HAVE COMPLICATIONS RELATED TO CANCER TREATMENTS. WE'RE VERY COLLABORATIVE AND SO WE LOOK FORWARD TO WORKING WITH EVERYBODY MOVING FORWARD. ANOTHER COMPONENT OF THE SYMPTOM SCIENCE CENTER IS THE DATA REPOSITORY AND THIS IS CALLED IDF. BASICALLY IT'S A WAY TO COLLECT THE DATA AND A WAY THAT IS OBJECTIVE, ORGANIZED AND ALSO ALLOWS FOR COMPARISON ACROSS OUR STUDIES AS WELL AS OTHER STUDIES THAT ARE COLLABORATING. AND SO AGAIN ONE OF THE COMMON THINGS AND ONE OF THE THINGS THAT WE LOOK AT IN OUR GROUP HERE AT NINR IS THE RELATIONSHIP BETWEEN SLEEP AND FATIGUE AND HOW DO THESE DIFFER -- BEING LINKED IN BOTH EXPERIENCE AND IN BIOLOGICAL UNDER PINNINGS. SO I'M GOING TO USE ONE OF OUR STUDIES TO SHOW HOW WE'RE USING THE SYMPTOM SCIENCE CENTER. SO WHAT WE KNOW IS THAT SLEEP IS IMPORTANT. WITH LESS SLEEP OR NONRESTORATIVE SLEEP THERE IS A RISK FOR FATIGUE. EMOTIONAL HEALTH AND ALSO CHANGES IN DIET BOTH THE DIET INFLUENCING THE SLEEP PATTERN AS WELL AS WITH CHANGES WITHIN THE DIET AND THESE HAVE IMPORTANT IMPLICATIONS WITH MORTALITY AND MORBIDITY. WE ALSO LOOK AT SLEEP. IT'S ONE OF THE ONLY TIMES AFTER A BRAIN INJURY THAT YOU CAN HAVE CLEARANCE OF PROTEINS LIKE TAO. THAT CAN BE PROBLEMATIC AND PLACE THAT PERSON AT RISK TO HAVE MORE LONG-TERM PROGRESSION OF THINGS LIKE ALZHEIMER'S DISEASE. SO IT'S IMPORTANT TO THINK ABOUT SLEEP AND FATIGUE THAT IS ALSO RESTORATIVE. AND SO WITH OUR STUDIES -- WHAT WE KNOW IS THAT THESE INJURIES œARE EXTREMELY COMMON. FOR TBIs MOST INDIVIDUALS WILL HAVE AT LEAST ONE DURING THEIR LIFETIME. LOSE CONSCIOUSNESS OR FEEL DIZZY OR HAVE A HEADACHE. MOST OF THEM WILL GO IN AND SEEK CARE AND THEN START TO FEEL BETTER. SO THESE ARE MILD. BUT FOR ABOUT 10% OF INDIVIDUALS THOSE TYPE OF -- MILD INJURIES RESULT IN LONG-TERM DEFICITS. WHAT WE'VE SEEN IS THAT IF AN INDIVIDUAL DOES NOT SLEEP WELL FOLLOWING AN INJURY THEY ARE MOST LIKELY NOT TO RECOVER FULLY AND BE SYMPTOM ATTIC THREE TO THREE MONTHS AFTER THE INJURY. IN ADDITION TO THIS WE'VE ALSO HAD A LOT OF STUDIES WHERE WE LOOK AT THE LONG-TERM IMPACT ESPECIALLY IN COHORTS OF VETERANS WHO HAVE DEPORTED TO CONFLICTS. SO WHAT WE KNOW IS THAT 30% TO 80% OF PEOPLE -- THIS IS ACTUALLY THE SECOND MOST COMMON SYMPTOM. SECOND ONLY TO HEADACHE. THIS IS A VERY COMMON SYMPTOM BUT WE DON'T KNOW WHY SOME INDIVIDUALS ARE DEVELOPING IT AND THE MECHANISMS UNDERLYING IT AND ALSO MAKING THEM MORE VULNERABLE TO HAVING ADDITIONAL SYMPTOMS AS THEY RECOVER FROM THE TBI. THERE IS A SPECIFIC FOCUS HERE THAT ALLOWS US TO DO RESEARCH WITH ACTIVE DUTY MILITARY AND VETERANS. THE FOCUS IS TO UNDERSTAND THE IMPACT OF BRAIN INJURY AND DESIGN INTERVENTIONS THAT HELP THOSE INDIVIDUALS THROUGH THEIR RECOVERY BOTH ACUTELY AS WELL AS CHRONICALLY. ONE OF THE STUDIES IS LOOKING AT THIS. AND SO WHAT WE SEE IN THE MILITARY, SLEEP IS VERY DIFFERENT. THIS IS NOTHING THAT I'VE EXPERIENCED BUT MANY INDIVIDUALS WITHIN THE MILITARY HAVE THIS TYPE OF DANGEROUS EXPERIENCES. OTHER THINGS THAT MAKE THIS POPULATION SPECIFICALLY VULNERABLE IS THAT THERE IS OFFER SHIFT WORK AND SLEEPING IN COMBAT STATION ENVIRONMENTS. OVERCROWDING. AND WHEN THEY RETURN FROM COMBAT OR DEPLOYMENT WITHOUT COMBAT MANY REPORT SLEEP DISTURBANCES THAT WERE NOT THERE PRIOR TO DEPLOYMENT. WHAT WE FOUND FROM SOME OF OUR STUDIES IS THAT SLEEP DISTURBANCES GREATLY IMPACT QUALITY OF LIFE AS WELL AS INCREASED RISK FOR DEPRESSION AND PTSD. INFLAMMATION OR INFLAMMATORY -- RELATES TO THESE RELATIONSHIPS SO WHAT WE ALSO SEE IF WE IMPROVE SLEEP JUST FOR SIX WEEKS AND THE INDIVIDUAL REPORTS IMPROVEMENT IN SLEEP WE SEE REDUCTIONS IN PTSD AND DEPRESSION. WE ALSO SEE IMPROVEMENTS IN QUALITY OF LIFE. WE'VE EVEN SEEN -- AN OVER-ALL REDUCTION IN C REACTIVE PROTEIN. ALSO REDUCTIONS IN AISLE 6 AND AN INCREASE OVER-ALL IN A NEURO PEPTIDE AND ESPECIALLY ESSENTIAL WHEN AN INDIVIDUAL IS SLEEPING IN STAGES 3 AND 4. IT REALLY LEADS US TO QUESTION HOW BEST CAN WE INTERVENE AND USE IT TO IMPROVE THE QUALITY OF LIFE. SO WE'RE UNDERTAKING A STUDY OF 60 MILITARY PERSONNEL AND VETERANS. THEY WILL BE COMING TO THE NIH AND WILL BE DOING SLEEP STUDIES ON THEM AND WE WILL BE DOING A LOT OF DIFFERENT MEASURES OF FATIGUE BOTH OBJECTIVE AS WELL AS SUBJECTIVE. WE WILL BE DOING DIARIES AND WHAT IS NICE HERE IS THAT BY USING THIS SLEEP UNIT WE WILL BE ABLE TO COLLECT BIOMARKERS. SO THAT WE CAN GET BIOMARKERS THAT RELATE TO THE STAGES OF SLEEP THAT THEY ARE IN SO THIS ALLOWS US TO UNDERSTAND THE ARCHITECTURE OF THE SLEEP TO UNDERSTAND WHAT INTERVENTIONS WOULD BE MOST EFFECTIVE. BECAUSE IT'S NOT JUST THE DURATION OF THE SLEEP BUT THE QUALITY AND THIS TYPE OF SCIENCE ALLOWS US TO DO THAT. WE'RE ALSO INCLUDING THINGS LIKE MRI AS WELL AS LOOKING AT MIGHT CONNIAL COMPONENTS AND ALSO HYDRO CORTISONE TESTS AND HOW IT MAY BE REGULATED OR DISREGULATED TO THESE SLEEP DISTURBANCES. THINGS THAT WE CAN DO IS INCREASE MONITORING. AND MAYBE IN THIS STUDY IS LOOKING AT LIGHT BASED THERAPY AND ALSO LOOKING AT FINDING ADDITIONAL TARGETS. MAYBE SOME TYPE OF ADAPTIVE DESIGN TO OPTIMIZE THE CARE THAT WE GIVE AND AGAIN TO PROVIDE PERSONALIZED CARE. SO THIS IS EXCITING AREA FOR US. WE'RE EXCITED TO HAVE IT START. AND WITH THAT I WANTED TO END BY PUTTING THIS UP HERE OF THE SYMPTOM SCIENCE CENTER. OUR MISSION AND OBJECTIVES. IT'S A HUGE UNDERTAKING. THE IMPLEMENTATION IS GOING TO BE STARTING OVER THE NEXT COUPLE OF MONTHS. WE'RE EXCITED ABOUT THAT. WHAT WE'RE LOOKING FOR IS TO CREATE A PLACE WHERE WE CAN DO AMAZING NURSING SCIENCE AND SCIENCE THAT FOCUSES ON THE SYMPTOMS AND TO CREATE COLLABORATIVE NETWORKS TO HELP OUR PATIENTS. IT'S AN EXCITING PLACE TO BE TO BE ABLE TO COME HERE TO DO THE RESEARCH ON A DAY-TO-DAY BASES. THIS IS A NEXUS WHERE WE CAN DO AMAZING RESEARCH NOT JUST HERE BUT AROUND THE WORLD SO I'M EXCITED TO SEE WHERE THIS TAKES US IN THE NEXT YEAR. THANK YOU. I'M REALLY HONORED TO BE HERE TO DISCUSS THE PATIENT OUTCOME MEASURES CAN BE USED TO CAPTURE THIS EXPERIENCE BY HIGHLIGHTING FROM OUR OWN WORK HERE AT THE CLINICAL CENTER AND I HAVE NO CONFLICTS TO DISCLOSE. I WANT TO SAY HAPPY NURSE'S WEEK. IF YOU HAVE NOT YET THANKED A NURSE THERE ARE ABOUT 700 OF THEM IN THIS BUILDING SO YOU'RE IN LUCK. AND SPEAKING OF NURSES I WANT TO START OUT BY ACKNOWLEDGING MY COLLEAGUES WHO ARE SOME OF MY FAVORITE NURSES INCLUDING OUR CHIEF AND CHIEF NURSE OFFICER MY MENTOR DR. WALLEN. OUR COLLABORATORS AND OUR STUDY PARTICIPANTS. MY OBJECTIVES TODAY ARE THREEFOLD. TO PROVIDE AN OVERVIEW OF NURSING RESEARCH AND TRANSITIONAL SCIENCE, TO DESCRIBE THE OOOH -- UTILITY OF OUTCOMES AS WELL AS SOME OF THE LESSONS WE'VE LEARNED ALONG THE WAY AND TO OPEN THE CONVERSATION TO FUTURE DIRECTION AND CHALLENGES IN SYMPTOM SCIENCE. SO WE REPRESENT A TRANSLATIONAL RESEARCH PROGRAM EMBEDDED IN A DYNAMIC CLINICAL BASED RESEARCH HOSPITAL. MANY ARISE FROM CLINICAL QUESTIONS RAISED BY NURSES. OUR GROUP CREATES THE POTENTIAL FOR EXTENDING THE SCOPE OF STUDIES BY FACILITATING CROSS DISCIPLINARY OUTCOMES. AND LIKE MANY OTHER LABS WE REPRESENT A MULTI-DISCIPLINARY TEAM COMPRISED E OF INVESTIGATORS, FIGURES, ANALYSTS AND OUR TRAINEES AND STUDENTS. THE PORTFOLIOS OF OUR INVESTIGATORS SPAN THE CONTINUUM. AND OUR PORTFOLIOS OFTEN INTERCEPT. I'LL ALSO BE HIGHLIGHTING COLLABORATIVE STUDIES. SO I WILL BE JUMPING AROUND A BIT BUT THE UNIFYING THREAD IS THE PATIENT OUTCOMES AND ASSESSING SYMPTOMS WHICH ARE COMORBID WITH CHRONIC DISEASE AND STRESS. I BEGAN MY JOURNEY HERE NINE YEARS AGO AS A SUMMER INTERN AND I'M STILL HERE. THIS WAS THE FIRST PROTOCOL OF WHICH I WAS INVOLVED. WE WORKED CLOSELY WITH THE MEMBERS OF THE TEAM TO TEST HYPNOSES AS A TOOL VIA RANDOMIZED CONTROLLED TRIAL. WHAT WE LEARNED IS THAT HYPNOSES SIGNIFICANTLY REDUCES PAIN IMPACT FROM BASELINE TO WEEK 12 OF TREATMENT AND BY INCORPORATING PATIENT REPORTED OUTCOMES WE WERE ABLE TO UNCOVER A SET OF SYMPTOMS THAT WERE BOTH PRESENT IN OUR POPULATION AND MODIFIED THROUGH INTERVENTION. WE KNOW THEY WERE MODIFIEDABLE THROUGH MIND BODY APPROACH SUCH AS HYPNOSES. DR. WALLEN LATER SERVED AS AN EXPERT WHICH ASSESSED SLEEP DISTURBANCE IN 328 ADULTS WITH SICKLE-CELL DISEASE. SO WHILE PHYSICAL SYMPTOMS OF SICKLE-CELL DISEASE -- WE FOUND THAT DISRUPTED SLEEP ARCHITECTURE AND DEPRESSIVE SYMPTOMS WERE COMMON AND IF LEFT UNTREATED THESE CO-MORBIDITIES COULD DECREASE QUALITY OF LIFE. ANOTHER POPULATION WE WORKED WITH INCLUDED UNDERSERVED PATIENTS WITH RHEUMATIC DISEASE SPANISH AND ENGLISH SPEAKING. WE UTILIZED PROs. WE FOUND THAT INDIVIDUALS WITH HIGHER SHARED DECISION MAKING SCORES BETWEEN PATIENT AND PROVIDER WERE MORE LIKELY TO DISCLOSE THE USE OF COMPLIMENTARY MEDICINE. SO INDIVIDUALS WERE SITING INSTRUMENTAL AND EMOTIONAL SUPPORT AND COMING FROM OTHER FAMILY MEMBERS WHICH WE BELIEVE HAVE IMPLICATIONS IN CARE MANAGEMENT. THE SAME STUDY WE WERE ABLE TO DEVELOP AN INVENTORY OF COMPLIMENCOMPLIMENT TERRY PRACTICES. -- THE IMPORTANCE OF TRANSLATING THAT MEASURE TO ENSURE THAT THE SAME MEANING IS REFLECTED SO AN EXAMPLE THAT I LIKE TO USING THERE WAS AN ITEM. THE QUESTION WAS DID YOU FEEL THAT YOU WERE JUST AS GOOD AS OTHER PEOPLE AND IN ENGLISH THIS REPRESENTS AN APPROPRIATE MEASURE OF SELF-WORTH BUT IN CERTAIN SPANISH SPEAKING POPULATIONS A NEGATIVE RESPONSE COULD BE A NEGATIVE RESPONSE OF BRAGGING BEFORE ONE SELF. SPEAKING OF CLINICIANS ANOTHER STUDY WE WERE ABLE TO COLLABORATE WITH STAFF NURSES HERE IN THE CLINICAL CENTER FOR INDIVIDUALS WITH ALCOHOL USE DISORDER. THE STAFF NURSES WERE OBSERVING A DISCORD ANNES BETWEEN WHAT THE PATIENTS WERE SELF-REPORTING. NURSES WHO WERE DOING THEIR HOURLY CHECKS REPORTED THAT THE PATIENTS APPEARED TO BE SLEEPING JUST FINE SO IN CLOSE COLLABORATION WE SET OUT TO UTILIZE OBJECTIVE AND -- SUBJECTIVE MEASURES. WE HAVE FOUND 90% -- REPORTED -- ONE OF THE IMPORTANT LESSONS FROM THIS WORK WAS THAT SOMETIMES COMMONLY USED PROs MIGHT NOT BE PROPER TO USE. ONE OF THE QUESTIONS IS HOW LIKELY ARE YOU TO DOSES OFF OR FALL ASLEEP IN THE FOLLOW SITUATIONS. -- IN A CAR WHILE STOPPED FOR A FEW MINUTES IN TRAFFIC AND WHAT WE REALIZED AS WE ASKED THESE OF PATIENTS THEY FOUND IT DIFFICULT TO IMAGINE THEMSELVES RIDE ORGANIZE DRIVING IN A CAR. HIGHLIGHTING THE IMPORTANCE OF SELECTING MEASURES THAT MAKE SENSE FOR THE SETTING THAT THEY ARE IN. ANOTHER POINT I WANT TO MAKE IS THAT SOMETIMES UTILIZING SOME OF THE LEGACY MEASURES CAN RESULT IN LONGER SURVEYS SO WE ARE TRYING TO BE MINDFUL OF PARTICIPANT BURDEN AND RESPONSE TIME. IN THE SAME SAMPLE WE WERE ABLE TO USE LATENT COST ANALYSIS. WHICH INCLUDED PATIENT -- OUTCOMES, CLINICAL ASSESSMENT AS WELL AS OBJECTIVE MEASUREMENTS. WHAT WE FOUND IS THAT INDIVIDUALS WITH THIS CLUSTER OF SLEEP DISTURBANCE SELF-REPORTED ANXIETY AND DEPRESSION WERE MORE LIKELY TO BE FEMALE AND MORE LIKELY TO EXPERIENCE HIGHER WITHDRAWAL SYMPTOMS. SO THIS IS JUST A VISUAL DEPICTION OF THE THREE GROUPS AND THEIR ENDORSEMENT. I WANT TO HIGHLIGHT GROUP THREE WHICH HAD HIGHER AMOUNTS OF DISORDERS. THEY ALSO EXPERIENCED HIGHER WITHDRAWAL. SO BY IDENTIFYING THESE CLASSES WE BELIEVE WE CAN PROVIDE CLINICIANS WITH INCITE WITH HOW TO TAYLOR INTERVENTIONS THAT MIGHT MEET THE NEEDS OF THESE INDIVIDUALS WITH VARIABLE COMORBID CONDITIONS. WE UTILIZED WRIST WORN ACCELEROMETERS. IN OUR CASE UP TO ONE FULL MONTH WHICH IS A LOT OF DATA AND THIS IMAGE DEPICTS THREE DAYS WORTH. WHAT WE FOUND IS AS WITH ANY TECHNOLOGY IT'S POWERFUL. NOT ALWAYS PERFECT. HOWEVER WHEN WE TRIANGULATE THIS IT TELLS A STORY. SO WE DOWNLOADED THIS PARTICULAR PATIENT'S -- ACTIVITY AND NOTICED A LOT OF NIGHTTIME WAKENINGS. HE WROTE IN HIS DIARY. SLEPT ALL DAY YET AND COULD NOT GET TO SLEEP AT NIGHT. THAT PATIENT HAD A SURGERY AND REPORTED NAPPING DURING THE DAY FOR UP TO 8 HOURS AS A RESULT OF PAIN. LITERALLY WROTE I HAVE MY DAYS AND NIGHTS MIXED UP SO WE WERE ABLE TO GO BACK AND MODIFY THE TECHNOLOGY BASED ON THAT PARTICIPANTS VERY ACCURATE SELF-RECORD DATA. THE FINAL EXAMPLE I WANT TO HIGHLIGHT IS THE UTILITY OF A MIXED METHOD APPROACH. OUR PREVIOUS WORK LED TO A MIXED METHOD STUDY FROM IN PATIENT TO OUTPATIENT AND BACK INTO THE COMMUNITY. WE ASSESSED WHETHER SLEEP RELATED BEHAVIORS OR BELIEFS OF INDIVIDUALS WITH ALCOHOL DEPENDENCE -- AND BY PAIRING WE WERE ABLE TO IDENTIFY BEHAVIORS THAT COULD HAVE IMPLICATIONS FOR TREATMENT SO FOR INSTANCE WHEN WE ASKED PATIENTS ONE-ON-ONE WHY THEY MAY HAVE RELAPSED A NUMBER OF THEM REPORTED SELF-MEDICATING AND INSOMNIA WITH ALCOHOL. SO WE BELIEVE IT'S IMPORTANT TO PAIR THEM TOGETHER. AND ANOTHER EXAMPLE OF THE UTILITY OF MIXED METHODS IS WHEN YOU'RE DEVELOPING NEW MEASURES. SO DR. GIL SHOWED THE SYMPTOM SCIENCE MODEL. SYMPTOM EXPERIENCE IS AN INDIVIDUAL CONSTRUCT WHETHER WORKING WITH INDIVIDUALS IN RECOVERY OR INDIVIDUALS WITH FEVER. THEY SHE WAS ABLE TO IDENTIFY NEW SYMPTOMS OF FEVER BUT ALSO A VARIABILITY AND COMPLEXITY OF FEVER SYMPTOMS THAT MIGHT NOT HAD BEEN PREVIOUSLY CAPTURED. THIS LED TO CONTENT VALIDITY WHICH EVALUATED PATIENT REPORTED OUTCOMES RELATED TO FEVER INTERVENTIONS. SO IN SUMMARY INCLUDING PROs AS BOTH PRIMARY AND SECONDARY OUTCOME MEASURES HAVE THE POWER TO CAPTURE THE PATIENT EXPERIENCE IN COMPLEX CHRONIC DISEASES. THEY CAN INFLUENCE THE RELATIONSHIPS, HEALTH RELATED QUALITY OF LIFE AND EVEN HEALTH CARE UTILITY. THEY CAN INFORM INTERVENTIONS. THEY CAN HELP US ESTABLISH AN UNKNOWN PREVALENCE AND THEY CAN AT TIMES IDENTIFY THE NEED FOR NEW MEASURES WHEN PAIRED WITH QUALITY STATED I HAVE DATE -- QUALITATIVE DATA. WE KNEW THERE WAS SOMETHING GOING ON IN A PARTICULAR POPULATION AND NOW I WOULD LIKE TO MOVE INTO THE FUTURE OF SYMPTOM SCIENCE. IF A PERFECT PATIENT REPORT OUTCOME EXISTED IT WOULD BE VALID AND RELIABLE. CAPTURE A COMPLEX SYMPTOM PROFILE. IT WOULD CONSIDER THE IMPACT OF THE DISEASE AND MOST IMPORTANTLY IT WOULD BE A POPULATION AND ENVIRONMENT SPECIFIC SO DOES THIS EXIST? PROBABLY NOT BUT WE CAN OPTIMIZE THE UTILITY BY LOOKING AHEAD TO THE FUTURE. NURSES ARE OFTEN UNIQUELY POSITIONED TO CAPTURE THE SYMPTOM EXPERIENCE WHICH IS VERY INDIVIDUALIZED. WE ARE CURRENTLY ENGAGERRING IN A COLLABORATION WITH NINR. WE WILL BE PILOTING THIS. SO AT THIS TIME I WANT TO OPEN THE CONVERSATION UP TO QUESTIONS. WHAT YOU BELIEVE ARE CHALLENGES MOVING FORWARD AND I'LL INVITE DR. GIL TO COME BACK AND THANK YOU FOR YOUR TIME AND ATTENTION. [ APPLAUSE ] >> THANK YOU VERY MUCH. I REALLY APPRECIATE THAT. I HAVE A QUESTION FOR BOTH OF YOU. AS I LISTENED TO YOUR PRO TALK I CAN'T HELP BUT THINK THAT THE PATIENT HAS TO BE ENGAGED EARLY ON IN TERMS OF DEFINITE SIGNING OUTCOMES. DO YOU DO THAT? WHEN DO YOU DO IT? HOW DO YOU DO IT? AND SHOULD WE BE DOING IT MORE BROADSLY FOR ALL OF OUR CLINICAL STUDIES? >> ABSOLUTELY. AS I MENTIONED SOME OF THE MIXED METHOD LOGICAL APPROACHES PARTICULARLY WORKING WITH DIVERSE AND VULNERABLE POPULATIONS ENGAGING YOUR PARTICIPANTS BEFORE YOU ATTEMPT TO ANSWER THE QUESTION, WE'VE USED COGNITIVE INTERVIEWS. WE SIT DOWN WITH PATIENTS AND ASK THEM WHAT BEHAVIORS THEY ARE ENGAGING IN. WHAT SYMPTOMS ARE THEY EXPERIENCING AND HOW WE CAN CAPTURE THEIR EXPERIENCE. SO I BELIEVE IT'S A CRITICAL FIRST STEP. >> DO YOU INCLUDE PATIENTS IN CONCEPT REVIEW OF PROTOCOLS OR IN ACTUAL REVEAL OF THE PROTOCOLS? SHOULD THEY BE? >> I CAN PUT MY TWO CENTS IN ON THAT. WE DO WITHIN OUR CENTER. WE HAVE A GROUP OF VETERANS AND ACTIVE DUTY WHO COME IN AND GIVE US FEEDBACK ON OUR PROTOCOLS AND FUTURE DIRECTION. ESPECIALLY WE'RE GETTING OR SYMPTOM SCIENCE CENTER GOING. THAT THEY OWN THE DATA AND HOW DO WE TRAPS LATE THAT TO FIND THE BEST INTERVENTIONS FOR THEM. >> WE DON'T DO A GOOD JOB AFTER CROSS THE NIH. YOU DO. >> YOU CAN. THIS IS HOW WE DO RESEARCH. WE WOULD LIKE TO COLLABORATE AND SEE THE BEST WAYS TO ADDRESS CRITICAL QUESTIONS THE BEST WAY. I WAS INTERESTED IN HOW YOU'RE THINKING ABOUT USING TECHNOLOGY TO ALSO NOT TO SEE PATIENTS AT NIH BUT TO EXTEND THAT TECHNOLOGY TO REACH BEYOND OUR BORDERS AND DO YOU SEE THAT MOVING FORWARD AND WHAT TYPE OF APPLICATIONS DO YOU SEE? >> ONE OF OUR BIGGEST CHALLENGES WITH WORKING WITH INDIVIDUALS IN RECOVERY IS THAT WE LOSE QUITE A BIT OF PATIENTS TO FOLLOW-UP ESPECIALLY AFTER DISCHARGE. OUR RECENT WORK IS DEMONSTRATING THAT EVEN IN THE 4 - 6 WEEKS DISCHARGE A NUMBER OF PATIENTS ARE RELAPSING. THEY THERE IS A PROPENSITY TO COME BACK AND ANSWERING OUR QUESTIONS AND FOLLOW-UP. WE'RE INTERESTED IN FINDING WAYS TO DELIVER EVIDENCE BASED INTERVENTIONED. -- INTERVENTIONS. SO INSTEAD OF PATIENTS COME BACK AND MEET IN PERSON WITH A THERAPIST EVERY WEEK FOR AN HOUR WE'RE SENDING THEM HOME WITH AN iPAD DEVICE WHICH WILL ALLOW THEM TO ACCESS THAT THERAPY EVEN FOR THOSE WHO ARE HOMELESS AND DON'T HAVE WiFi ON A REGULAR BASES THEY CAN STILL ACCESS THE EVIDENCE BASED INTERVENTIONS AND HOPEFULLY DECREASE IN INSOMNIA SYMPTOMS. >> ANY OTHER QUESTIONS? YOU CAN ASK US ANYTHING NOT RELATED TO THIS. WELL. WE THANK YOU FOR YOUR ATTENDANCE. WE LOOK FORWARD TO WORKING WITH YOU. E-MAIL ME. ANYTHING THAT WE CAN DO TO START TO WORK TOGETHER. IF YOU'VE GOT FOUNDATIONAL THINGS THAT YOU MAKE SURE THAT WE'RE CONSIDERING. PLEASE REACH OUT TO US. WE LOVE FEEDBACK AND SUGGESTIONS. THANK YOU