FIRST SESSION IS MENSTRUAL HEALTH LITERACY AND ADVOCACY, I'LL INTRODUCE EACH SPEAKER AS WE GO. SO OUR FIRST TALK WILL BE DR. KRISTEN MATTESON, DIRECTOR OF THE DIVISION OF RESEARCH, DEPARTMENT OF OBSTETRICS AND GYNECOLOGY, BROWN UNIVERSITY, STANDARDIZING ASSESSMENT OF MENSTRUATION AND VALUING THE PATIENT'S EXPERIENCE, WE CAN DO BOTH. GOOD MORNING. THANK YOU FOR THE INTRODUCTION. I TITLED THIS STANDARDIZING ASSESSMENT OF MENSTRUATION AND EVALUATE THE PATIENT EXPERIENCE BASED ON WHAT HALVORSON ASKED ME TO SPEAK ABOUT. WE CAN DO BOTH. I'M TALKING TO AN AUDIENCE OF THE CONVERT, USUALLY I'M TRYING TO CONVINCE PEOPLE WE SHOULD DO BOTH AND MOST OF US ARE ON THE SAME PAGE ABOUT HOW IMPORTANT PATIENT EXPERIENCE IS. SO I HAVE NO FINANCIAL DISCLOSURES. I WANT TO START, LET'S START THE CONVERSATION ABOUT MENSTRUATION BY THANKING DOCTORS HALVORSON AND DR. TINGEN FOR PUTTING TOGETHER THIS SESSION. ELEVEN YEARS AGO WRITING A CAREER DEVELOPMENT AWARD, I HAD A CONFUCIUS SIGN OVER MY COMPUTER, WHY SHOULD THE NIH CARE ABOUT PERIODS? I LOOKED OVER AND OVER AGAIN TO REMIND MYSELF I NEEDED TO KEEP CONVINCING THEM THAT WAS AN IMPORTANT TOPIC. FAST FORWARDING TEN YEARS LATER I COULDN'TING MORE EXCITED TO BE TALKING ABOUT MENSTRUAL BLEEDING HERE AT THIS DISCUSSION SESSION. SO I'M REALLY EXCITED. SO I PLAN ON TALKING ABOUT THE PAST AND PRESENT OF CLINICAL ASSESSMENT OF MENSTRUATION, BUT THEN REALLY THINKING ABOUT THE FUTURE, HOW SHOULD WE HARMONIZE THE DATA WE COLLECT FOR RESEARCH SO OUTCOMES DATA -- ANY OUTCOMES THAT ARE IMPORTANT TO WOMEN. I THINK WE HAVE TO FIRST START WITH WHAT'S NORMAL AND WHAT'S ABNORMAL. I SHOULD FRAME THIS IN THE CONTEXT I'M NOT TRYING TO MEDICALIZE MENSTRUATION, MY RESEARCH IS ON HEAVY MENSTRUAL BLEEDING. NORMALLY THE CLINICAL DEFINITION, CYCLIC IMPLEADING BETWEEN MENARCHE AND MENOPAUSE. YOU CAN SEE ON THE RIGHT SIDE THE PARAMETERS FOR NORMAL AND ON THE LEFT SIDE WHAT THOSE CONCEPTS ARE. THEY ARE IN TERMS OF THE FREQUENCY OF THE BLEEDING, REGULARITY OF THE EPISODES, DURATION OF THE EPISODES, AND THEN VOLUME OR HEAVINESS. ABNORMAL IS ANYTHING THAT WASN'T CAPTURED ON THE NORMAL SLIDE. ABNORMAL BLEEDING IS DEFINED AS ANY ALTERATION IN VOLUME OR PATTERN OF MENSTRUAL BLOOD FLOW AFFECTING 10 TO 30% OF WOMEN, SO SO MANY WOMEN ARE AFFECTED BY THIS. HEAVY MENSTRUAL BLEEDING, A SUBSET OF ABNORMAL UTERINE BLEEDING, ISN'T A STRAIGHTFORWARD SYMPTOM TO ASSESS BECAUSE IT'S A SYMPTOM OF UNDERLYING PROBLEM THAT AFFECTED DIFFERENT WOMEN DIFFERENTLY CAUSED BY NINE ETIOLOGIES PRESENTED YESTERDAY. THESE ARE CAPTURED BY THE PALM-COEIN CLASSIFICATION SYSTEM. STAYING FOCUSED, WHO KNOW WHAT IS IS HEAVY? WHAT IS HEAVY MENSTRUAL BLEEDING? TRADITIONALLY IN RESEARCH BLEEDING WAS MEASURED BY VOLUME OF MENSTRUAL BLOOD LOSS, SO THIS WAS THE MAIN OUTCOME MEASURE, WHAT DEFINED WOMEN IN TERMS OF BEING ELIGIBLE FOR STUDIES ON TREATMENT EFFECTIVENESS, THE MAIN OUTCOME MEASURE IN MANY OF THESE STUDIES. THE CUTOFF FOR HEAVINESS WAS 80 MILLILITERS OF MEAN BLOOD LOSS FROM POPULATION NORMS IN THE 1960s. THE ACTUAL VOLUME OF BLOOD LOSS PER CYCLE ISN'T THE MAIN REASON WOMEN SEEK CARE FOR THIS PROBLEM, ILLUSTRATED BY STUDIES BY PAM WARNER IN 2004, 2/3 OF WOMEN SEEKING CARE FOR HEAVY MENSTRUAL BLEEDING WOULDN'T MEET THIS OBJECTIVE BLOOD LOSS CRITERIA. SO IT'S EXCITING TO SEE THAT AS WE FAST FORWARD NOW TO 2018 AND THE GUIDELINES PUBLISHED IN MARCH FROM THE NATIONAL INSTITUTE OF CLINICAL EXCELLENCE FROM THE NATIONAL HEALTH SERVICES THAT THEY STATED CLEARLY IN THEIR GUIDE FROM THE WOMEN'S POINT OF VIEW, METHODS TO OBJECTIVELY MEASURE REDUCTION IN MEAN BLOOD LOSS ARE CONSIDERED TO BE POOR INDICATORS OF TREATMENT EFFECTIVENESS FOR HEAVY MENSTRUAL BLEEDING. HOW SHOULD WE MEASURE HEAVY MENSTRUAL BLEEDING IN RESEARCH AND CLINICAL CARE? I'D SUGGEST WE DO IT BY NOT MEASURING HEAVY MENSTRUAL BLEEDING BUT INSTEAD ASSESSING THE WOMAN WHO REPORTS HEAVY MENSTRUAL BLEEDING AND FOCUSING ON THE PATIENT EXPERIENCE. SO THAT'S KIND OF TOUGH, RIGHT? SO WHAT IS PATIENT EXPERIENCE? HOW DO WE MEASURE PATIENT EXPERIENCE? AND TO FIGURE THIS OUT WE ASKED PATIENTS. WE CONDUCTED FOCUS GROUP STUDIES. THESE WOMEN CAN STATE IT MUCH BETTER THAN I CAN. ONE QUOTE FROM OUR FOCUS GROUPS THAT WE OBTAINED, I WAS AT A WEDDING, STOOD UP AND LOOKED TO SEE I MESSED UP A MICE LACY CHAIR. I PUT ON A CLOTH NAPKIN AND AM LEAVING, THIS IS SO EMBARRASSING. ANOTHER QUOTE, MY BLEEDING WAS HORRENDOUSLY HEAVY, LAST PERIOD I HAD TO LEAVE MY DESK SEVERAL TIMES TO CHECK. IN FACT I WENT HOME TWICE BECAUSE I LEAKED AND STAINED THROUGH MY CLOTHES. THIS IMAGE FROM THE SHINING, I ALMOST TOOK OUT BUT DECIDED TO KEEP IT IN. [LAUGHTER] BECAUSE THIS IS ACTUALLY THE IMAGE THAT COMES UP IF YOU LOOK AT BLOGS OF WOMEN ONLINE TALKING ABOUT THEIR HEAVY BLEEDING. THIS IS THE PICTURE THEY USE. A PICTURE IS WORTH A THOUSAND WORDS. I THANK MY FRIEND NEXT TO ME AT THE TABLE IN THE BACK WHO CONVINCED ME TO KEEP IT IN. BUT THIS IS IT. THIS REALLY CAPTURES WHAT IT IS. IT'S CONSISTENT WITH OUR STUDY FINDINGS AND FINDINGS FROM OTHER QUALITATIVE RESEARCH. A WOMAN'S INABILITY TO AVOID UNPREDICTABLE BLEEDING EPISODES, LEAKING, STAINING, SOILING IN PUBLIC IS DEVASTATING, A HUGE SOURCE OF ANXIETY AND STRESS. SO WE NEED TO FIGURE OUT HOW DO WE CAPTURE THIS AS AN OUTCOME MEASURE FOR RESEARCH. ESPECIALLY CLINICAL RESEARCH. BECAUSE THIS CONCEPT IS STARTING TO GAIN TRACTION IN TERMS OF NATIONAL AND INTERNATIONAL DEFINITIONS OF HEAVY MENSTRUAL BLEEDING, BUT I ASKED THE QUESTION EARLIER, AND IT'S STILL A QUESTION OUT THERE, HOW DO WE MEASURE THIS, RIGHT? HOW DO WE COLLECT DATA ON THIS? HOW DO WE QUANTIFY THIS? AND I'D SUGGEST WE CAN DO IT WITH PATIENT REPORTED OUTCOME MEASURES. SO PATIENT-REPORTED OUTCOME MEASURES ARE DEFINED BY THE FDA AND NATIONAL QUALITY FOUNDATION, AS REPORT THAT COMES DIRECTLY FROM THE PATIENT OR SUBJECT, ABOUT THE STATUS OF HEALTH, WITHOUT AMENDMENT OR INTERPRETATION OF THE RESPONSE BY THE CLINICIAN OR ANYONE ELSE. ASSESSED BY STANDARDIZE AND VALIDATED MEASURES. THIS IS FROM ISPOR BECAUSE THEY HAVE THE VALIDATION AND HOW THEY SHOULD BE INCORPORATED INTO CLINICAL CARE AND RESEARCH, TONS OF ARTICLES TO READ. TEN YEARS AGO, I WAS PLANNING TO CONDUCT A RANDOMIZED CLINICAL TRIAL AS A WOMEN'S REPRODUCTIVE HEALTH RESEARCH SCHOLAR FUNDED BY THE K12 AND NICHD. AND I DECIDED I NEED TO FIGURE OUT WHAT INSTRUMENT I WANT TO USE AS OUTCOME MEASURE. WE STARTED TO CATALOG OUTCOMES USED, I PLANNED ON CHOOSING THE BEST ONE FOR MY STUDY. SO IN THE PROCESS I IDENTIFIED 80 ARTICLES THAT USED 77 DIFFERENT INSTRUMENTS. SEVEN QUANTIFIED AMOUNT OF BLEEDING, ONE EXAMPLE IS PICTORIAL BLEEDING ASSESSMENT CHART PUBLISHED IN 1990. 23 EVALUATED MENSTRUAL OR GYNECOLOGIC SYMPTOMS, 20 EVALUATED MENSTRUAL-RELATED QUALITY OF LIFE, TWO EXAMPLES ABERDEEN SCORE AND MENORRHIGAA AND 27 QUALITY OF LIFE INSTRUMENTS. IF YOU LOOK AT THE TABLE MANY WILL DEVELOPED ONCE FOR A SINGLE STUDY BY THE CLINICIAN CONDUCTING THE STUDY, WEREN'T NECESSARILY VALIDATED. WHAT I CONCLUDED BASED ON THIS, MY GROUP CONCLUDED BECAUSE I PARTNER WITH A SURVEY METHODOLOGIST HERE THERE WAS NO PERFECT INSTRUMENT, DEFINITELY SOME GOOD INSTRUMENTS BUT NO SINGLE INSTRUMENT WAS CONSIDERED STANDARD OF CARE. I WAS LOOKING BACK ON SOMETHING ELSE PUBLISHED RECENTLY AROUND THAT TIME, A PAPER DONE BY PROFESSOR CLARK IN THE U.K. LOOKING AT QUALITY OF LIFE INSTRUMENTS. AND OVERWHELMING CONCLUSION THESE INSTRUMENTS WERE GENERALLY GOOD QUALITY IN TERMS OF HOW THEY WERE VALIDATED EXCEPT FOR CLINICAL FACE VALIDITY. SO THAT IN THE DEVELOPMENT OF MANY OF THESE INSTRUMENTS, WOMEN WITH THE SYMPTOM OF HEAVY BLEEDING WERE INVOLVED IN THE PROCESS TO MAKE SURE THE QUESTIONS ACTUALLY CAPTURED THEIR EXPERIENCE. SO WE CONCLUDED AS A RESULT OF ALL OF THIS THAT OUR ABILITY TO PERFORM RESEARCH ON AUB COULD BE GREATLY IMPROVED WITH DEVELOPMENT AND USE OF A HIGH-QUALITY STANDARDIZED OUTCOME MEASURE THAT PROVIDES A GLOBAL ASSESSMENT OF PATIENT EXPERIENCE. I TOOK A DETOUR, MOVING STRAIGHT AHEAD, PROMISED A RANDOMIZED CLINICAL TRIAL WHAT I WAS GOING TO DO BUT INSTEAD SPENT FIVE YEARS DEVELOPING AND VALIDATING THE MENSTRUAL BLEEDING QUESTIONNAIRE. I'M GOING TO TAKE FIVE YEARS AND DO IT IN FIVE SECONDS. SO THE FIRST STEP IS THE COURSE REVIEW PRESENTED ON THE PREVIOUS SLIDE. BASED ON THIS AND FOCUS GROUPS WITH WOMEN, WE GENERATED A CONCEPTUAL FRAMEWORK ON ONE OF MY SUBSEQUENT SLIDES. BASED ON THIS CONCEPTUAL FRAMEWORK WE BROKE IT DOWN INTO DOMAINS OF SYMPTOM, SYMPTOM IMPACT, AND THEN FOR EACH OF THESE DOMAINS DEVELOPED ITEMS, WHICH WE THEN TESTED IN INDIVIDUAL CLINICIAN AND PATIENT INTERVIEWS, AND REVISED THE QUESTIONNAIRE. WE GENERATED A DRAFT OF THE QUESTIONNAIRE WE THEN VALIDATED THROUGH MULTIPLE STUDIES, AND ENDED UP WITH A FINAL VERSION. SO FIVE YEARS AND FIVE SECONDS. MENSTRUAL BLEEDING QUESTIONNAIRE IS ONE EXAMPLE OF THE QUESTIONS OUT THERE, THE ONE OF COURSE I'M MOST FAMILIAR WITH, THE ONE WE DEVELOPED. IT HAS FOUR DOMAINS, HEAVNESS, REGULAR CLARITY, PAIN AND QUALITY OF LIFE, 20 ITEMS WITH A SCORE UP TO 75 WITH 75 MEANING œTHE WORST POSSIBLE IMPACT ON QUALITY OF LIFE. AND THEN WE CONDUCTED MULTIPLE STUDIES TO SHOW THAT IT WAS VALID. BUT WHAT I WANT TO FOCUS ON IS VALIDITY THAT WE WERE MOST INTERESTED IN WHICH WAS INSURING PATIENT RELEVANCE AND FACE VALIDITY. WE INCORPORATED THE CONCEPT IN MULTIPLE STUDIES FROM THE U.K. AND BASED THOSE ON IN-DEPTH INPUT FROM WOMEN SUFFERING FROM HEAVY MENSTRUAL BLEEDING. WE FOUND WHO KEY CONCEPTS THAT WE INCLUDED DIFFERENT FROM WHAT WE'D SEEN PREVIOUSLY. AND ONE WAS THIS FEAR OF SOCIAL EMBARRASSMENT. SO MANY OF THESE QUESTIONNAIRES HAD ITEMS ABOUT LEAKING OR STAINING BUT NOT ABOUT THIS ANXIETY AND FEAR THAT THAT'S GOING TO HAPPEN IN A PUBLIC SITUATION. AND THEN THE LEAKING AND STAINING EPISODES BECAME LESS OF A PROBLEM FOR THESE WOMEN AS THEY ADAPTED TO THIS OVER TIME SO THEY HAD LESS LEAKING AND STAINING BECAUSE THEY COMPLETELY CHANGED THEIR LIVES AROUND THEIR BLEEDING. THEY CANCELED SOCIAL ENGAGEMENTS, THEY CANCELED FAMILY ACTIVITIES, THEY CHANGED THEIR WORK SCHEDULES. SOMETIMES THEY WORE DEPENDS UNDERGARMENTS WITH MULTIPLE MENSTRUAL PRODUCTS, NO LONGER HAVING LEAKING AND STAINING EPISODES BUT THEY HAD REPLACED IT WITH THIS ANXIETY AND RITUAL-LIKE BEHAVIOR TO AVOID IT AT ALL COSTS. AND HARD TO CAPTURE BUT WE TRIED TO DO THAT WITHIN THE QUESTIONNAIRE. HIGHLIGHTING HERE IN CONTRAST ANOTHER GOOD QUESTIONNAIRE, ABERDEEN MENORAGGHIA SCORE, 20 SCORES INCLUDING PATIENT REPORTED OUTCOME, IT WAS IN FIVE, INCLUDING SIMILAR ITEMS ON HEAVINESS, REGULARITY, PAIN, QUALITY OF LIFE. WHAT THEY DID IS THEY DEREQUIRED QUESTIONS THAT WERE COMMONLY USED BY CLINICIANS RATHER THAN QUESTIONS WITH WOMEN. DOES THAT MAKE A DIFFERENCE? DIFFERENCES ARE SUBTLE. WE SHOWED WOMEN THE ABERDEEN MENORAGGHIA SCORE AND HAD THEM RATE QUESTIONS IN THE SCALE IN TERMS OF IMPORTANCE AND RELEVANCE TO THEIR LIFE. THIS ONE QUESTION ON HALVING HOW MANY PADS ON HEAVIEST DAY OF YOUR PERIOD, ONE ISSUE THAT CAME UP, WOMEN SAID I DON'T JUST CHANGE MY PADS WHEN SOAKED, I CHANGE WHEN I HAVE TIME TO GO TO THE BATHROOM OR CHANGE MY PAD BECAUSE I DON'T WANT TO BE WEARING A DIRTY PAD. SOMEONE SAID I DON'T USE PADS, I USE TAMPONS OR DOUBLE TAMPONS AND DEPENDS UNDERGARMENTS, OTHERS DOES IT DEPEND WHAT KIND OF PAD YOU USE. WE INCLUDED INSTRUCTIONS ON WHAT KIND OF SANITARY PRODUCT, IN TERMS OF BLEEDING BEING SOAKED, AND THEN ASKED ABOUT HOW MANY PRODUCTS THEY SOAKED EITHER COMPLETELY OR ALMOST COMPLETELY. ANOTHER SORT OF COMPARE AND CONTRAST IS THIS QUESTION ON THE SEVERITY SCALE, HAVE YOU HAD ANY PROBLEMS WITH SOILING OR STAINING BECAUSE OF YOUR PERIODS, AND TALKS ABOUT OUTER CLOTHES, BED LINEN, UPHOLSTERY. AND WE WERE REALLY SURPRISED THAT WOMEN DIDN'T RATE THIS AS SUPER IMPORTANT AND RELEVANT BECAUSE THIS IS WHAT WE'D SEEN AT OTHER QUALITATIVE RESEARCH. WHEN WE PROBED MORE DEEPLY INTO WHY WOMEN WEREN'T RESPONDING THIS WAS SUPER IMPORTANT, IT WAS EXACTLY THAT, THEY HAD TO CHANGE THEIR BEHAVIORS, THEY HAD RESTRUCTURED THEIR LIVES AROUND THEIR BLEEDING SO THEY WEREN'T HAVING AS MANY SOILING AND STAINING EPISODES. SO IF YOU WERE JUST CAPTURING THIS, YOU MIGHT MISS A WOMAN WHO THEN WAS SKIPPING WORK, CHANGING FAMILY ACTIVITIES AND CHANGING SOCIAL ACTIVITIES. >> (INAUDIBLE). >> ALL OVER 18, YES, ADULT WOMEN. >> HIGH SCHOOL. >> YEAH, ABSOLUTELY. YOO MOST OF THEM WERE SUFFERING FOR YEARS AND YEARS. >> (INAUDIBLE). >> YEAH, SO TALKING ABOUT FUTURE DIRECTIONS, IT'S LOOKING AT HAVING A QUESTIONNAIRE THIS IS FOR ADULT WOMEN, WE SPECIFICALLY FOCUSED ON ADULT WOMEN BECAUSE THE CONVERSATION WOULD BE DIFFERENT FROM HIGH SCHOOLERS AND ADOLESCENT WOMEN. WE BROKE IT INTO THREE PARTS, SOILING, STAINING WAS STILL AN IMPORTANT THING TO MEASURE BUT WE ADDED HOW THEY CHANGED BEHAVIOR TO AVOID INCIDENTS AND HAVE THEM RATE ON A SCALE OF 0-10 LEVEL OF CONCERN ABOUT HAVING THIS HAPPEN TO THEM. SO SIMILAR BUT SUBTLE DIFFERENCES WHEN YOU ACTUALLY HAVE PATIENTS INVOLVED IN THE PROCESS. SO I THINK WE'RE MOVING, RIGHT? SO WHAT WE'RE SHOWING HERE IS THAT STUDIES ON HEAVY MENSTRUAL BLEEDING SPECIFICALLY ARE MOVING FROM PROBLEM FOCUSED, SO THE PROBLEM IS 80 MILLILITERS OF MEAN BLOOD LOSS AND MEASURING THAT AND QUANTIFYING THAT AS ELIGIBILITY CRITERION AND OUTCOME MEASURE. AND THEN REALLY THINKING ABOUT PATIENT-FOCUSED OUTCOMES, USING PATIENT-BASED OUTCOME MEASURES IS WHERE WE'RE MOVING. WHENEVER THERE'S A CHANGE, THERE ARE UNINTENDED CONSEQUENCES, THIS SYSTEMATIC REVIEW IS PART OF THE SOCIETY FOR GYNECOLOGIC SURGEONS KIND OF HIGHLIGHTS ONE OF THE UNINTENDED CONSEQUENCES SO I THINK THERE'S HUGE MOMENTUM AND INTEREST IN STARTING TO ENTHUSE PATIENT-REPORTED OUTCOME MEASURES IN RESERB BUT WHAT THEY FOUND IN THIS TRIAL WHERE THEY WERE LOOKING AT COMPARING TRIALS OF TREATMENT IDENTIFIED 79 STUDIES COMPARING TREATMENTS BUT ACROSS THESE STUDIES 114 DIFFERENT OUTCOME MEASURES WERE USED. DATA COULDN'T BE SUMMARIZED INCLUDING BLEEDING RELATED QUALITY OF LIFE AND COULDN'T GENERATE CONSENSUS ON TREATMENT EFFECTIVENESS ON ANYTHING OTHER THAN OBJECTIVELY MEASURED BLOOD LOSS. SO LACK OF STANDARDIZEED OUTCOME ASSESSMENT IS COMPROMISING OUR ABILITY TO DO CROSS-CUTTING RESEARCH, BUT I THINK THE FUTURE IS BRIGHT, I THINK THE RESEARCH COMMUNITY CAN TACKLE THIS PROBLEM. I THINK THAT THERE'S WORK HAPPENING IN TERMS OF THE PATIENT-REPORTED OUTCOME MEASURES. INFORMATION SYSTEM, THE NIH, AND CORE OUTCOMES IN S IN WOMEN'S AND NEWBORN HEALTH, 78 JOURNALS TO IMPROVE INTERPRETABILITY AND FEASIBILITY OF COMBINING DATA, ALSO COMBINING INTO EHRs IS HUGE BECAUSE THIS COULD REVOLUTIONIZE THE WAY WE'RE DOING COMPARATIVE EFFECTIVENESS RESEARCH. CURRENTLY RESEARCHERS, POLICYMAKERS, PROFESSIONAL SOCIETIES ARE WORKING METHODOLOGIC AND TECHNOLOGIC UNDERPINNINGS OF REALLY INCORPORATING PATIENT-REPORTED OUTCOME MEASURES INTO ELECTRONIC MEDICAL RECORDS. I DON'T WANT TO FORGET CLINICAL CARE. THIS IS A RESEARCH CONFERENCE BUT I THINK IF WE THINK ABOUT PATIENT-REPORTED OUTCOME MEASURES IN CLINICAL CARE WE'LL DO A GREAT SERVICE TO OUR PATIENTS AS WELL. THEY CAN BE USED TO REALLY CAPTURE THE PATIENT'S EXPERIENCE AND DIRECT THEM TOWARDS THE DIFFERENT EVALUATION METHODS THEY SHOULD HAVE AND DIFFERENT TREATMENT OPTIONS. THEY CAN FACILITATE PATIENT/PHYSICIAN COMMUNICATION AND TRACK SYMPTOMS OVER TIME AND CAN BE USED TO TRACK QUALITY. QUALITY IS A HUGE BUZZWORD IN CLINICAL CARE RIGHT NOW, AND THESE HAVE A HUGE POTENTIAL TO CHANGE HOW WE LOOK AT QUALITY OF CARE AND THEY ARE BEING USED IN THE NATIONAL HEALTH SERVICES IN THE U.K. WHERE STANDARDIZED PATIENT-REPORTED OUTCOME MEASURES ARE MEASURED BEFORE AND AFTER CERTAIN SURGICAL PROCEDURES, USING THAT TO GLOBALLY ASSESS QUALITY OF THEIR SURGICAL PROGRAMS. SO TO MOVE TOWARDS WRAPPING UP, HEALTH CARE LANDSCAPE IS CHANGING, BIG DATA IS CHANGING THE WAY WE DO RESEARCH. I THINK ALSO THE WAY WE'RE THINKING ABOUT MENSTRUAL BLEEDING AND HOW WE'RE MEASURING IT IS CHANGING AS WELL. INCORPORATING PATIENT-REPORTED OUTCOME MEASURES ESPECIALLY ELECTRONICALLY HAS THE POTENTIAL TO ADVANCE THE FIELD OF WOMEN'S HEALTH. SO IF WE'RE TAKING CLINICAL RESEARCH AND CLINICAL CARE AND TAKING WHAT WE'RE FINDING IN CLINICAL CARE AND BASING IT ON RELEVANT CLINICAL RESEARCH AND BASING CLINICAL RESEARCH ON CLINICAL CARE AND ON THE PATIENTS AND POPULATIONS WE SERVE, WE'LL MAKE SURE WE'RE MAKING PROGRESS. AND JUST TO CONCLUDE, I TOOK THIS MAJOR DETOUR FROM DOING A RANDOMIZED CLINICAL TRIAL TO LOOKING AT PATIENT-REPORTED OUTCOME MEASURES BECAUSE THE PATIENT VOICE AND PATIENT EXPERIENCE DESERVES TO BE AT THE CENTER. AND ONLY WHEN WE HAVE THE PATIENT AT THE CENTER ARE WE REALLY GOING TO BE ABLE TO SYNERGIZE SCIENTIFIC DISCOVERY, CLINICAL CARE, POPULATION HEALTH AND WELLNESS. I APPRECIATE YOUR TIME AND I'M THRILLED TO SPEAK AT THE CONFERENCE AND I'M SURE WE'LL TALK ABOUT THIS FURTHER OVER THE DAY. THANK YOU VERY MUCH. [APPLAUSE] >> ALL RIGHT. THANK YOU SO MUCH. NEXT SPEAKER IS MISS MISSY LAVENDER, FOUNDER AND CEO OF BELOW YOUR BELT SPEAKING ON mHEALTH TOOLS AND APPS FOR MENSTRUAL HEALTH. IF ANYONE IS GETTING ACTUALLY COLD AT SOME POINT LET ME KNOW. >> CAN YOU HEAR THIS? OKAY. IN THE BACK? OKAY. I ACTUALLY HAVE A TIMER. I'LL HIT MY GO BUTTON. CANDACE JUST WALKED OUT. THANK YOU SO MUCH TO DR. HALVORSON AND TINGEN AND BIANCHI. I'VE LEARNED SO MUCH LISTENING TO EVERYONE. I'M MISSY LAVENDER, I WAS ASKED TO COME AND SPEAK ABOUT TECHNOLOGY AND MENSTRUATION. SO I KNOW SOME OF YOU THROUGH OUR NON-PROFIT, WHICH WAS FORMERLY KNOWN AS WOMEN'S HEALTH FOUNDATION, WE SWITCHED IT TO BE INCLUSIVE, TO KNOW IS TO KNOW, HAVE DONE EVIDENCE-BASED COMMUNE-BASED INTO DEVELOPMENT, BRINGING WOMEN INTO CONVERSATION ABOUT THE PART OF THE BODY SHOVED TO THE SIDE AND MOST IMPORTANTLY GETTING THEM TO THE RIGHT CARE FASTER. TWO YEARS AGO WE FOUNDED BELOW YOUR BELT, I'M SPEAKING NOTHING ABOUT ME SO YOU'RE GOING TO GET A VIGNETTE. WE HAVE AN APPLICATION IN WITH NICHD FOR AN SBIR, SMALL BUSINESS INNOVATION GRANT LOOKING AT MOTHER-DAUGHTER CONTINUUM USING A COACHING TECHNOLOGY TOOL AND WORKING ON ANOTHER PLATFORM WITH AN NSF APPLICATION THAT'S GOING TO LOOK AT CREATING A MORE EFFICIENT AND EFFECTIVE PELVIC HEALTH PROCESS BY CREATING A PATIENT-FACING TOOL THAT IS CREATING A MORE ACTIVATED COMPLIANT AND EDUCATED PATIENT. SO TRYING TO HELP HER COME IN HOT, ARMED, READY TO GO, NOT GOOGLING DR. WebMD AND CARRYING HER TO MAKE SURE SHE SEES WHAT THE PRACTICE NEEDS TO HAVE HER SEE. SO THAT THE PHYSICIANS CAN ACTUALLY DO WHAT THEY WANT TO DO MORE EXPEDIENTLY AND EFFICIENTLY. SO, WHEN I WAS THINKING ABOUT TECHNOLOGY, IF YOU THINK ABOUT IT, WE USE TECHNOLOGY IN THE SPACE TO LEARN AND THEN TO DEAL. SO I WAS THINKING ABOUT HOW MANY OF THE PEOPLE IN THIS ROOM INCLUDING ME MIGHT HAVE LEARNED ABOUT OUR PERIOD, OR YOUR YOUR SISTER OR HOWEVER WE LEARNED ABOUT THE REPRODUCTIVE SYSTEM. FOR ME BEING A GOOD CATHOLIC GIRL AT THE TIME WE WERE IN THIS KIND OF SCARY ENVIRONMENT WHERE WE GOT A VIDEO, I DON'T THINK IT MENTIONED THE VAGINA BY NAME. [LAUGHTER] BECAUSE OF THE NUNS. MY MOM LOCKED US IN THE CARE, WE COULDN'T JUMP OUT BECAUSE IT WAS MOVING. WE WATCHED THIS VIDEO, I REMEMBER BEING HORRIFIED IN THE ROOM WITH BOYS AT THE TIME. IT INCLUDED HOW TO PUT OUR CALENDAR CIRCLES, THIS WAS FROM THE U.K. VIDEO AND MADE A POINT ABOUT KEEPING OUR FEET DRY AND WARM, I'M NOT SURE WHY. BAD TO CATCH A COLD DURING YOUR PERIOD I GUESS. AND THEN WE OFTEN GOT BOOKLETS ON OUR BED, RIGHT? THAT WAS SOME MOTHERS' WAYS, READ IT AND YOU'LL FIGURE IT OUT. I HAVE A 17-YEAR-OLD, AND A LOT OF YOU IN THE ROOM MAY HAVE YOUNGER PEOPLE IN YOUR LIFE. WHAT'S IT LIKE FOR THEM? SO WHEN MY DAUGHTER WAS 9 SHE GOT THE PROVERBIAL CARE AND KEEPING OF YOU, A GREAT BOOK BY THE AMERICAN GIRL WORLD. HAS FOUR PAGES THAT ARE REALLY HELPFUL TALKING ABOUT YOUR PERIOD AND HOW TO PUT IN A TAMPON, THAT WAS A GREAT DISCUSSION. AND THEN SHE HAD HER CLASS AND HER TEACHER DID A BETTER JOB I THINK THAN OUR GENERATION AND ACTUALLY EXPLAINING THINGS, BOOKS AND VIDEOS WERE BETTER. WHERE SHE AND HER FRIENDS HAVE GONE AND GO FOR INFORMATION ABOUT STRATEGICALLY LEARNING ABOUT THIS NEW PELVIC HEALTH ADVENTURE IS ONLINE, RIGHT? YouTube IS THE THING. SO THIS IS ONE OF MY FAVORITE VIDEO SERIES. IT'S THIS GIRL TALKING ABOUT MANY, MANY THINGS AROUND PERIODS. THIS IS WITH HER LABIA PUTTING IN A TAMPON, A LOW TECH WAY. AMAZE.ORG IS GETTING YOUR PERIOD, DEALING WITH RESPECT AND ETHICS, BOY HEALTH AS WELL. AND THEN THERE'S SOME SPONSORED SIDES THAT AREN'T BAD. THIS IS BEINGGIRL.COM BY ALWAYS, THEY HAVE A WHOLE SERIES OF YOUTUBE VIDEOS. I FIND THE PEOPLE PRESENTING A LITTLE IRRITATING, JUST PERSONAL CHOICE. BUT THERE'S ALSO SOME PRETTY GOOD WEBSITES. AGAIN, BACK TO BEING GIRL, THIS IS AN OKAY ONE. I THOUGHT IT WAS FASCINATING WHEN I WENT THERE, EVERYTHING FROM THE FIRST PERIOD TO THE SHY BLADDER OR SENSITIVE BLADDER AS THEY CALL IT. CLEARLY TRYING TO COVER A LOT OF GROUND IN ONE WEBSITE AND THEIR PRODUCTS KIND OF DO THAT BOTH. BUT THEN THE GIRLS HEALTH IS A GREAT SITE FROM OUR FRIENDS IN THE GOVERNMENT WHICH WE LOVE. AND THEN ANOTHER SPONSORED SITE THAT HAS WON AWARDS, YOU BY KOTEX THAT BLEW EVERYBODY AWAY, CREATING CHAT ROOMS AND TALKING ABOUT SUBJECTS, MOSTLY STRATEGICALLY, WHAT DO YOU DO WHEN GOING TO THE BEACH, REDESIGNED WITH COMMUNITY AND CONTENT FEATURES TO US. SO THAT'S KNOWLEDGE. AND THEN YOU'RE DEALING WITH IT NOW, RIGHT? HOW DO YOU HANDLE YOUR PERIOD? WELL, BOTH IN THE BEGINNING AND AS IT GOES FORWARD THERE'S A DISCUSSION. NOW, THE BIGGEST THING WE HAVE TO DO IS KEEP TRACK, RIGHT? SO LISA SHOWED THE PICTURE EARLY ON ABOUT -- OR WAS IT DIANA AND HER PRESENTATION ABOUT THE NUMBER OF APPS, AND THERE ARE BASICALLY APPS OUT THERE, TRACKING APPS. LET'S SEE IF ANYONE HAS A GUESS. I DON'T HAVE DOLLARS TO THROW AT YOU BUT HOW MANY TRACKING APPS DO YOU THINK ARE CURRENTLY ON THE IOS GOOGLE WORD, 60,000 HEALTH APPS SO -- ANYBODY HAVE A RANDOM GUESS? 100? 200? 300? 400? I'M GOING TO STOP YOU. 361 AT LAST COUNT. I LOVE THE THOUSAND BACK THERE. AND THEY LOOK VERY DIFFERENT, DEPENDING WHO THEY ARE FOCUSED ON. SO THEY STRATIFY A LITTLE BIT BY AGE AND ORIGIN, CULTURAL ORIGIN. SO WE'RE GOING TO JUST TALK ABOUT A FEW. GOOGLE THEM, THERE'S EIGHT OR TEN THAT CONSISTENTLY GET THE MOST AMOUNT OF TRAFFIC. WE DID A LOOK WHEN WE WERE STARTING BELOW YOUR BELT AT THIS CONCEPT BECAUSE WE DO WANT TO INCORPORATE A TRACKER AND DON'T NEED TO REINVENT THE WHEEL. ONLY A FEW OF THE COMPANIES THAT I CAN DETERMINE ARE ACTUALLY PROFITABLE. AND YOU CAN SEE WHY SOME OF THEM ARE IN A MINUTE. BUT THIS IS WHAT MY iPHONE LOOKED LIKE DOING THE RESEARCH FOR THIS SIX OR SEVEN WEEKS IN ADVANCE. I HAD EVERYTHING UP THERE. AND A LOT OF YOU CAN SEE ARE VERY PINK, CONSISTENT NEGATIVE FEEDBACK, I WANT SOMETHING THAT DOESN'T LOOK LIKE I'M A CHILD AS I EMPLOYEE -- AS I GROW UP. APPLE HEALTH DEVELOPED WITHOUT TRACKING MENSTRUAL OR REPRODUCTIVE HELD. 71% OF AMERICANS TRACK SOME HEALTH SYSTEM. MOSTLY TRACKING USING -- FORTUNE FOR YOUR PERIOD IS NOT HAPPENING DIGITAL. THEY BASICALLY RECOMMENDED WE CONNECT TO A BUNCH OF DIFFERENT APPS ON THE RIGHT CIRCLED. WE'LL ALK ABOUT A FEW. THE NUMBER ONE AND TWO TRACKERS BOTH BY NUMBER OF USERS AND ALSO PROFITABILITY OF THE COMPANY IS A GERMAN COMPANY THAT OWNS GLOW AND THEN ITS SISTER EVE. GLOW YOU CAN SEE FROM THE BEGINNING SCREEN IS FOCUSED ON THAT REPRODUCTIVE AGE WOMAN, TRYING TO GET PREGNANT OR AVOID GETTING PREGNANT. THEY HAVE AN OPTION IF YOU'RE A MALE USER, A WAY THAT SOME TRACKERS ARE GOING TO ALLOW THE PARTNERS TO ACTUALLY SEE THE CYCLE TOO. THIS IS JUST OBVIOUSLY A HETEROSEXUAL VERSION OF IT. BUT THEY ARE ALWAYS TRYING TO GET YOU TO UPSELL INTO THE PROMO FEATURES, SO THAT'S HOW TRACKERS ARE MAKING MONEY. WHERE GLOW IS DIFFERENT, THEY FOCUS ON FERTILITY. THEY ARE THEIR OWN FERTILITY COUNSELORS YOU CAN TALK TO FOR FREE AND SPECIFICALLY IN NEW YORK YOU CAN ACCESS DISCOUNTED FERTILITY PROCEDURES AND THEY WILL HOOK YOU UP WITH PROVIDERS. IT'S REALLY FAST NATURING TO ME. EVE IS THEIR YOUNGER CHEEKIER SISTER. I LIKE THE CHEEKY GRAPHICS FROM ONE OF THE REVIEWERS, DAILY SEX QUIZ, MORE FUNKY AND AVANT-GARDE AND FOCUS ON A LITTLE YOUNGER WOMAN. I SEE THIS AS MORE OF A COLLEGE MILLENNIAL USER. AND THEY DO HAVE A VERY BIG STRONG COMMUNITY AND MOST OF THE BIG APPS DO HAVE A COMMUNITY FEATURE TO THEM. THE ONE THAT ACOG HAS ENDORSED, WRITTEN BY THE GREEN JOURNAL AS NUMBER ONE TRACKER, WAS CLUE. AND THEY HAVE DONE A LOT OF PARTNERSHIPS WITH RESEARCH, AND I THINK YOU'LL SEE MORE OF THAT TO KRISTEN'S POINT ABOUT PATIENT-REPORTED OUTCOMES, A MINE OF AMAZING DATA FOCUSED ON THE WOMAN TRYING TO CONCEIVE OR NOT CONCEIVE AGE GROUP. YOU'LL SEE MUCH MORE, THEY HAVE ALGORITHMS, NOT CALLING IT A.I. OR MACHINE-BASED LEARNING. SOME OTHER ONES DO. IT'S GETTING BETTER AT TRACKING THE START OF YOUR PERIOD AND YOUR CYCLE WHICH IS REALLY WHAT WOMEN IN THIS AGE AND STAGE ARE LOOKING FOR. AND THEN I WANT TO POINT THIS OUT, KIND OF FUN. WHEN CLUE CAME OUT WITH THEIR SYMPTOM CHECK, SO THEY HAVE ALL GONE TO GRAPHIC WHEN TRACKING YOUR SYMPTOMS. THEY USED TO BE VERY AGAIN HETEROSEXUALLY FOCUSED, IF YOU WERE HAVING SEX, PROTECTED OR UNPROTECTED WITH THAT DUDE THAT LOOKS LIKE BURT REYNOLDS, REST IN PEACE -- [LAUGHTER] -- WE GOT INCLUSIVE AND MORE FUN WITH ICONS. I LIKE THE IUD CHECK-IN, AND THEY SEND FUN FACTS ABOUT YOUR HEALTH, THOSE GET SMARTER AS YOU GO. FLOW, A LOT OF PEOPLE LIKE, VERY SIMILAR LOOK AND FEEL. YOU CAN SEE IT'S CLEAN AND DAILY HEALTH TIPS ARE COOL AND THEY PASS FOR PROTECTED, ANOTHER THING YOU'LL SEE ALL OF THE BIGGER ONES ADAPT. PERIODS LIGHT, TRACKER LIGHT PEOPLE LIKE, THERE'S A TRACKER PRO. I LIKE THE ONE-BUTTON PUSH TO START AND STOP YOUR PERIOD, AGAIN, MAKES IT SIMPLE. WE'RE GETTING INTO THE TRADITIONAL LOOK AND FEEL. YOU CAN CHANGE THE FLOWERY LOOK, IT SYNC WAS APPLE HEALTH AND THERE'S DATA SHARE WITH YOUR PARTNER, NICE HOW THEY CALL IT PARTNER, IT'S A NICE FEATURE. MY FAVORITE IS SPOT ON BY PLANNED PARENTHOOD, THEY HIT 1.5 MILLION USERS, ONE AN ARTS COMMUNICATION EXCELLENCE AWARD FOR DESIGN. IT'S VERY NON-GENDER NORMATIVE, GENDER NON-INCLUSIVE. DISTINGUISHES FEATURES, ABILITY VIA TEXT TO SET UP A LIVE CHAT WITH A HEALTH CARE PROVIDER FROM PLANNED PARENTHOOD, YOU CAN GO ONLINE AND MAKE A RESERVATION, AN APPOINTMENT AT A CLINIC. I THINK THAT'S FANTASTIC. AND THEY ARE ALSO CONNECTING WITH APPLE HEALTH. SO THEN THERE'S THIS QUESTION OF YOUTH. AND BECAUSE WE'RE FOCUSED ON MOTHER-DAUGHTER CONTINUUM LOOKING FOR A TRACKER AND I HAVE AN 17-YEAR-OLD, THIS IS A TOUGH ONE. AND WHEN WE WERE DOING OUR MOTHER-DAUGHTER FOCUS GROUPS MOMS WERE CONTINUALLY SAYING I WANT PLACE WHERE MY DAUGHTER WITH GO AND KEEP TRACK BUT THERE'S ALL THESE SCARY TOPICS THAT I'M NOT READY FOR HER TO REALLY ENGAGE WITH AT 11, AROUND SEX MOSTLY, AND IT'S TOUGH. SO I'LL SHOW YOU A FEW OPTIONS. THE NEXT TWO PERIOD CALENDAR AND PERIOD DIARY ARE ADULT TRACKERS BUT THEY HAVE -- THEY ARE TRYING TO DO A CROSS-OVER, LOGOS ARE DISCREET. THEY HAVE CUSTOMIZABLE PET EMOJIS, THEY CAN BE CATS TOO. IT ALLOWS YOU TO TRACK ALL THE THINGS YOU'RE TAKING, BIRTH CONTROL, SUPPLEMENTS, PILLS, A DISTINGUISHING FEATURE. THEY CALL THEMSELVES TEEN FRIENDLY BUT GOOD NEWS, BAD NEWS. THEY HAVE OPTION, TWO USERS, NICE IF THERE ARE TWO FEMALES, TWO PEOPLE WITH FEMALE BODY PARTS I SHOULD SAY MENSTRUATING IN THE SAME HOUSEHOLD BUT GROWNUPS OR YOUTH, WHICH IS REALLY NICE, AND, AGAIN, THIS ABILITY TO EXPORT A DOCUMENT THAT YOU CAN PRINT THAT SHOWS YOUR CYCLE, A NICE FEATURE YOU CAN TAKE TO YOUR DOCTOR. THE NEGATIVE IS COMMUNITY FORUM HAS A TEEN CHAT AND ADULT CHAT PART BUT THEY ARE INTERCHANGEABLE AND YOU CAN'T TURN THIS OFF ON THIS TRACKER. PERIOD DIARY, YOU CAN SEE LOOKING MUCH MORE TEEN-ISH, NOT SPECIFICALLY FOCUSED ON THE TEEN/'TWEEN BUT MORE YOUTHFUL. PASSWORD PROTECTED AND CAN SYNC WITH YOUR REGULAR CALENDAR, THINGS THAT POP UP LOOK A LITTLE BIT INNOCUOUS. MY PERSONAL FAVORITE FOR THE TEEN SPACE, OR 'TWEEN SPACE REALLY, IT'S THE 'TWEEN, TRACKER OVULATION CALENDAR, SO SIMPLE I COULDN'T FUND A LOGO AND HAD TO GO TO MY HOME SCREEN AND MAGNIFY IT. YOU CAN CHANGE THE BACKGROUND FIVE OR SIX WAYS, NO COMMUNITY FORUM, JUST VERY SIMPLE DIARY. WHICH MAKES IT NICE FOR SOME USERS. MONTHLY CYCLE ALSO VERY MINIMAL, IT DOES SYNC TO YOUR HAPPENEL HEALTH, THESE ARE TWO REALLY GOOD OPTIONS FOR THE YOUNGER USERS. HERE IS A GOOD CASE OF BAIT AND SWITCH. THIS IS CALLED MAGIC GIRL, TEEN FOCUSED, APPLICATION EMOJI LOOKS LIKE A TEEN GIRL. AVATARS ARE INTERESTING. DIARY, SHE BOUGHT SHOES ONE DAY, HAD PROTECTED HEART SEX THERE, SO THAT'S INTERESTING. YOU CAN TURN THAT OFF. THERE'S AN ABILITY AS A PARENT TO DISABLE THAT FEATURE. BUT WHEN WE SHOWED THIS TO PEOPLE FOR FEEDBACK, THE MOMS DIDN'T LIKE IT AT ALL. THEY THOUGHT IT WAS JUST ODD AND BIZARRE. THIS IS SUPER GIRL ASSISTANT, I DON'T UNDERSTAND IT. IT'S OUT OF CHINA. YOU CAN TRACK YOUR PERIOD, BATTERY, AND CLEAN YOUR PHOTOS AND VIDEOS, ODD TO BE IN THE SAME APPLICATION. I WAS AFRAID TO DO IT TO SEE IF IT WOULD SCRUB MY ENTIRE PHONE, IT WORRIED ME. SO WE WERE ASKED OF COURSE TO THINK ABOUT WHAT ELSE IS OUT THERE AND WHAT DO WE NEED. AT THE END OF YOUR CYCLE IS WHERE OR ANYTHING THAT'S NOT REGULAR, THERE'S REALLY A DEARTH OF OPPORTUNITIES HERE, AS FAR AS ANY KIND OF APP OR TECHNOLOGY. SO, THIS IS -- THERE ARE A COUPLE THINGS THAT POPPED UP. IT'S KIND OF A BAD NEWS/GOOD NEWS ON THIS SLIDE. FLUTTER CAME UP WHEN I WAS SEARCHING FOR ENDOMETRIOSIS AND FIBROIDS. THERE'S A LINE FOR SELF DIAGNOSIS, REALLY COOL. IT'S ASKING GOOD QUESTIONS AND YOU HIT A DEAD END EVERY TIME. IN CHICAGO IF I WANTED TO FIND A PROVIDER IT GAVE ME THREE SUBURBS, NOBODY POPPED UPPED, DEFINITELY ENDOMETRIOSIS FOCUS BUT NOT VERY HELPFUL APPLICATION. ON THE POSITIVE SIDE GLOW IN PARTICULAR, MY LAST COUPLE WEEKS I WAS BLEEDING PROFUSELY, A LOT OF PAIN, TRYING TO MIMIC FIBROIDS AND ENDO AND SEE WHAT WOULD COME UP. THEIR HEALTH TIPS ARE MORE ROBUST THAN SEE YOUR PROVIDER, WELL DONE, CDC-FOCUSED, CALL YOUR LADY DOCTOR, I THOUGHT THAT WAS NICE. NOW, MENOPAUSE, REALLY TOUGH. TWO-- REALLY TWO GOOD OPTIONS, I WAS EXCITED TO SEE MENAPRO IN 2014, BY NAMS, NORTH AMERICAN MENOPAUSE SOCIETY WITH AN ALGORITHM, DO YOU HAVE THIS, DO YOU HAVE THAT, YOU START BY SAYING ARE YOU A CLINICIAN OR PATIENT. I THOUGHT, GOOD. I WENT THROUGH IT. A LITTLE DRY. BACK TO SOME OF THE QUESTIONS ABOUT SURVEY INSTRUMENTS. AND IT DID COME OUT WITH A -- YOU KNOW, A CONCLUSION FOR ME AND GAVE ME SOME INTERESTING THINGS TO LEARN ABOUT POSSIBLE ISSUES. IT'S JUST NOT VERY USER FRIENDLY. THERE ARE NO PATIENT REPORTED OUTCOMES HERE THAT THIS IS NO PATIENT LISTENING IN THIS, IN THE DEVELOPMENT OF THIS, BUT IT'S OUT THERE. MY SISTERS IS LITERALLY JUST A CHAT ROOM AND COMMUNITY BOARD FOR MENOPAUSE. IT HAS A VERY BORING CALENDAR AND YOU CAN TRACK YOUR SYMPTOMS BUT IT'S REALLY HARD TO FIGURE OUT WHAT THE CALENDAR IS SAYING. BUT THERE IS A COMMUNITY THERE OF OTHER PEOPLE. AND I THINK WE CAN DO BETTER HERE. SO, OUR SUGGESTIONS, OUR BRAINSTORMING SUGGESTIONS WERE THINGS THAT ARE ACTUALLY BETTER. OOPS, WHOA, COME BACK. FOR ENDOMETRIOSIS, FIBROIDS, CHRONIC PELVIC PAIN. CERTAINLY THE MOTHER IN THE MIDDLE WHO CONTROLS HER OWN CYCLE AND BODY, DEPENDING WHERE YOU TARGET IT HAS BOTH YOUNGER AND OLDER PEOPLE WHO POTENTIALLY HAVE ISSUES. I THINK THERE'S A REALLY RICH GROUND THERE. AND ANYTHING THAT CAN BE HELPFUL TO THE PROVIDER, SO THAT WHEN THAT PATIENT WALKS IN SHE'S GOT AN EXPERIENCAL THING TO SHARE AT POINT OF SERVICE, I'D LOVE IT AVAILABLE IN EMRs. RUBY DID THIS PHOTOGRAPHIC SERIES CALLED "PERIOD." I'M NOT GOING DO READ THE POEM, I WANT TO READ THIS LAST -- FIRST SENTENCE OF THE LAST PARAGRAPH IF YOU CAN'T SEE IT. I THINK IT'S SO BEAUTIFUL. WE MENSTRUATE, THEY SEE IT AS DIRTY, AS IF IT IS NOT A BRIDGE BETWEEN THE UNIVERSE AND LAST, AS IF THIS PROCESS IS NOT LOVE, LABOR, LIFE, SELFNESS AND STRIKINGLY BEAUTIFUL. SO THANK YOU VERY MUCH. [APPLAUSE] >> HI. THANK YOU VERY MUCH. OUR THIRD SPEAKER FOR THE SESSION IS DR. ERICA MARSH, CHIEF OF REPRODUCTIVE ENDOCRINOLOGY AND INFERTILITY, UNIVERSITY OF MICHIGAN, SPEAKING ON MENSTRUAL HEALTH LITERACY AND DISPARITIES, THE PATIENT VOICE. >> THANK YOU VERY MUCH. THANK YOU, DR. HALVORSON, DR. BIANCHI, DR. TINGEN, FOR THE OPPORTUNITY TO TALK ABOUT SOME VERY RELATIVELY NEW SPACE THAT I'VE GOTTEN, AND THESE ARE MY DISCLOSURES. MY INTEREST IN THE MENSTRUAL CYCLE IS LARGELY AROUND FIBROIDS. I DO BASIC SCIENCE WORK IN THAT SPACE, CLINICAL RESEARCH IN THAT SPACE, MORE RECENTLY QUALITATIVE WORK IN THAT SPACE OUT OF SOME FRUSTRATIONS THAT I'VE HAD A PHYSICIAN CLINICALLY IN FEELING THAT WE -- THERE'S A LOT MORE THAT WE NEED TO BE DOING TO MEET THE PATIENT, WHERE SHE IS. SO, THIS IS -- THIS QUOTE ENCAPSULATES A LOT OF THAT FRUSTRATION, SO I HAD A PATIENT THAT I WAS TRYING TO GET TO CHARACTERIZE HER EXPERIENCE, AND I WAS GOING DOWN THE REGIMENTED LIST OF THINGS THAT WE ASK PATIENTS ABOUT THEIR MENSES, TRYING TO GET HER TO CHARACTERIZE IT BETTER. SHE PUT HER HAND UP AND STOPPED ME. DR. MARSH, SOMETIMES I HAVE PAIN, SOMETIMES I DON'T. SOMETIMES I FEEL LIKE I HAVE TO GO TO THE BATHROOMS EVERY TEN MINUTES, SOMETIMES I DON'T. ONE THING I KNOW, THERE WILL BE BLOOD. AND, YOU KNOW, OF COURSE IT WAS A STRIKING STATEMENT, BUT I FEEL SETS THE TONE FOR THE REST OF THE TALK. FIBROIDS, MOST OF THE PEOPLE IN THIS ROOM ARE INCREDIBLY AWARE OF THEM. THEY ARE MEDICALLY TERMED LYOMYOMAS. I CONTINUE TO CALL THEM BENIGN BECAUSE AS I TRANSITION FROM USING THE WORD BENIGN I HAD A PATIENT -- ACTUALLY SEVERAL PATIENTS SAY YOU'RE NOT TELLING ME SOMETHING, WHY AREN'T YOU USING THE WORD BENIGN, IS THERE SOMETHING YOU'RE KEEPING FROM ME? SO I FOUND MYSELF HAVING TO NEGOTIATE THOSE DISCUSSIONS, AND BOTH AFFIRM THAT THESE ARE NONMALIGNANT MASSES AND ALSO AFFIRM THAT I UNDERSTAND THAT THE PATIENT -- THAT THE DESCRIPTION OF THE MASS IS NOT A REFLECTION OF WHAT THE PATIENT IS EXPERIENCING. THESE TUMORS CAN BE MANY-FOLD. THEY CAN BE VERY LARGE. THEY ARE LARGELY CONSISTENT OF EXTRACELLULAR MATRIX. THEY HAVE A SIGNIFICANT FINANCIAL IMPACT. THE STUDY BY A FORMER MENTEE, CARDOZA AND SEEGER AT NIH, THEY ACCOUNT FOR $34 BILLION ANNUALLY IN THE U.S., LEADING CAUSE FOR HYSTERECTOMY IN THE UNITED STATES. CLINICALLY, I THINK THE ONLY GOOD THING ABOUT FIBROIDS IS THAT UP TO HALF OF WOMEN OR UP TO 60% OF WOMEN WITH FIBROIDS DO NOT HAVE SYMPTOMS. SO THEY ARE INCIDENTAL FINDING, AND THEN MANY WOMEN, AS WE KNOW, SYMPTOMS OF FIBROIDS VARY WITH LOCATION AND SIZE, THE MOST PREDOMINANT SYMPTOM THAT LEADS TO CLINICAL CARE, PRESENTATION, IS THAT OF ABNORMAL UTERINE BLEEDING, HEAVY MENSTRUAL BLEEDING SUBTYPE. PATIENTS ALSO PRESENT WITH PAIN, WITH BULK SYMPTOMS, PAIN DURING INTERCOURSE, URINARY FREQUENCY, RECTAL PAIN AND PRESSURE AS WELL. AS WELL AS INFERTILITY AND PREGNANCY LOSS. AND JUST TO SHOW THAT THAT PICTURE WAS NOT JUST A PICTURE, BUT IS REFLECTIVE OF MANY UTERI THAT WE ARE SEEING CLINICALLY, SO IN THIS PATIENT THE UTERUS, NORMALLY ABOUT THE SIZE -- NON-PREGNANT UTERUS NORMALLY THE SIZE OF YOUR FIST TO GIVE YOU CONTEXT, CAN INCREASE IN SIZE VERY SIGNIFICANTLY WITH THE PRESENCE OF FIBROIDS, AND THIS IS A PATIENT THAT HAS HAD A 28-WEEK FIBROID UTERUS WITH MULTIPLE FIBROIDS PRESENT THROUGHOUT THE ENTIRE WALL. SO WHO GETS FIBROIDS? PRETTY MUCH ANYONE WHO HAS A UTERUS HAS A VERY GOOD CHANCE OF HAVING FIBROIDS. MOST STUDIES SHOWS THEY HAVE CUMULATIVE INCIDENTS BY AGE 50, BETWEEN 65 AND 70% FOR ALL COMERS. IF YOU'RE AFRICAN-AMERICAN, OR OF AFRICAN ANCESTRY, THAT RISK GOES UP TO CLOSE TO 90%, AND SO THE STORY BECOMES IF YOU'RE OF AFRICAN ANCESTRY WHY DON'T YOU HAVE A FIBROID? YOU KNOW, IF YOU LAP TO BE IN THAT CATEGORY, IN FACT I WAS WORKING WITH SOME OF MY CLINICAL AND RESEARCH COLLEAGUES IN KRAGANA TRYING TO GET A SENSE OF PREVALENCE THE FIBROIDS THEY SAY. WE DON'T UNDERSTAND, WHAT DO YOU MEAN? WELL, WHAT PERCENTAGE OF YOUR PATIENTS HAVE UTERINE FIBROIDS? YOU KNOW, THEY WERE TALKING TO ONE ANOTHER, LIKE WHAT DO YOU MEAN WHAT PERCENT? I SAID, WELL, YOU KNOW, HOW MANY -- IF YOU SAW 100 PATIENTS, HOW MANY WOULD HAVE FIBROIDS AND HOW MANY WOULDN'T HAVE FIBROIDS? THEY SAID, IF WE SAW 100 PATIENTS? I SAID YEAH. THEY SAID, 100. YOU KNOW. THEY ARE LIKE, WE DON'T UNDERSTAND, WHY ARE YOU ASKING THIS? SO THIS CONDITION IS CERTAINLY HIGHLY PREVALENT IN THE UNITED STATES. IT'S VERY HIGHLY PREVALENT IN LIKELY MORE HIGHLY PREVALENT IN MANY AFRICAN COUNTRIES. THERE'S SOME RIGOROUS RESEARCH THAT WE NEED TO DO TO GET A BETTER SENSE FROM A POPULATION PERSPECTIVE OF EXACTLY WHAT THE PREVALENCE IS. BUT THERE'S VERY -- SOME VERY INTERESTING AND SIGNIFICANT DISPARITIES WITH REGARD TO RACE. OBESITY HAS ALSO BEEN FOUND TO BE A RISK FACTOR FOR FIBROIDS, MOST STUDIES, NOT ALL, HYPERTENSION, PELVIC INFECTIONS, INTERESTINGLY ALCOHOL BUT SPECIFICALLY JUST BEER HAS BEEN FOUND TO BE A RISK FACTOR. PARITY AND SMOKING HAVE BEEN FOUND TO BE PROTECTIVE. OVER THE COURSE OF THIS MEETING WE TALKED ABOUT A LOT OF POTENTIAL THERAPEUTIC BREAKTHROUGHS, WE TALKED ABOUT THE ROLE OF GENETICS AND EPIGENETICS. WE TALKED ABOUT MENTION OF CHROMOSOMAL ABNORMALITIES. WE TALKED ABOUT TISSUE MODELS AND WAY FOR US TO BETTER UNDERSTAND THE DISEASE AS WELL AS SURGICAL APPROACHES. WHEN WE THINK ABOUT WHY WE DO WHAT WE DO, WHEN WE THINK ABOUT PRECISION MEDICINE AND WHAT THAT MEANS, AND PERSONALIZED MEDICINE, WE HAVE TO REMEMBER THAT AT THE CENTER OF THAT IS IN FACT A PERSON. IT'S NOT A MUTATION. IT'S NOT A SNP. IT'S NOT UPREGULATED PROTEIN OR DOWNREGULATED PROTEIN. BUT INDEED A PERSON. AND THE IDEA OF PATIENTS BEING AT THE CENTER OF OUR CARE IS CERTAINLY NOT A NEW ONE. IT WAS ACTUALLY FULLY ADDRESSED AT THE -- BY THE NATIONAL ACADEMY OF MEDICINE FORMERLY INSTITUTE OF MEDICINE, BACK IN ONE IN THEIR TEXT ON CROSSING THE QUALITY CHASM, WHERE THEY TALKED ABOUT PATIENT-CENTEREDNESS BEING DEFINED AS HEALTH CARE THAT ESTABLISHES A PARTNERSHIP AMONGST PRACTITIONERS, PATIENTS, THEIR FAMILIES, WHEN APPROPRIATE, TO ENSURE DECISIONS RESPECT PATIENTS' WANTS, NEEDS, PREFERENCES AND PATIENS HAVE THE EDUCATION AND SUPPORT THEY NEED TO MAKE DECISIONS AND PARTICIPATE IN THEIR OWN CARE. SO WHAT DO OUR PATIENTS WANT? THEY WANT THE RIGHT CARE IN THE RIGHT WAY AT THE RIGHT TIME. SOMETIMES THAT MEANS THEY WANT MEDICINE, SOMETIMES THAT MEANS THEY WANT A PROCEDURE. SOMETIMES THAT MEANS THEY JUST WANT TO BE HEARD AND LISTENED TO. IT'S NOT ALWAYS CURING THAT THEY WANT. SOMETIMES THE MOST HEALING THING THAT WE CAN GIVE PATIENTS IS AN OPEN EAR. AND ESSENTIALLY WHAT THEY WANT IS NOTHING ABOUT ME WITHOUT ME. SO AS WE LOOK AT PATIENT-CENTERED CARE AND APPLY IT TO FIBROIDS BROADLY, BUT ABNORMAL UTERINE BLEEDING IN THE CONTEXT OF FIBROIDS SPECIFICALLY, WE GET TO THE EIGHT DIMENSIONS OF PATIENT-CENTERED CARE. SO THE PICKER INSTITUTE AND HARVARD MEDICAL SCHOOL IN PARALLEL WITH INSTITUTE OF MEDICINE COMING UP WITH PATIENT-CENTERED CARE MODEL CAME UP WITH THESE -- OR DEVELOPED EIGHT DIMENSIONS OF PATIENT-SCHEDULER CARE AFTER INTERVIEWS WITH THOUSANDS OF PATIENTS AND THOUSANDS OF PROVIDERS. SO THESE DIMENSIONS INCLUDE FIRST AND FOREMOST PATIENT PREFERENCE, EMOTIONAL SUPPORT, PHYSICAL COMFORT, INFORMATION AND EDUCATION, CONTINUITY AND TRANSITION, COORDINATION OF CARE, ACCESS TO CARE, AND THE INCLUSION OF FRIENDS AND FAMILY SHOULD THE PATIENT WANT THAT. SO, WHAT THAT MEANS IS IN THE CONTEXT OF HEAVY MENSTRUAL BLEEDING IN PARTICULAR, IS THAT WE REALLY CAN'T VIEW IT AS A BREAD AND BUTTER GYNECOLOGICAL EVENT AS WE HISTORICALLY HAVE BEEN TAUGHT TO VIEW IT, AS OB/GYNs IN PARTICULAR. OH, ABNORMAL UTERINE BLEEDING? OH, YOU HAVE A HYSTERECTOMY, YOU HAVE THIS. THERE HAS TO BE FULL ENGAGEMENT WITH THE PATIENT. EVEN WHEN WE'RE VERY CLEAR ON WHAT WE THINK THE BEST TREATMENT IS FOR A PATIENT. I CONDUCTED A SERIES OF ABOUT 60 ONE-ON-ONE QUALITATIVE INTERVIEWS WITH PATIENTS WITH SYMPTOMATIC FIBROIDS, AND PUBLISHED THE THEMATIC FINDINGS OF THOSE INTERVIEWS IN A SERIES OF PAPERS, AND I WANT TO SHARE RESULTS WITH YOU FROM THAT WORK. BUT JUST TO DRAW THE DISTINCTION, THE PROVIDER PERSPECTIVE OF A PATIENT MAY SEE THIS, A 43-YEAR-OLD G4 P3 WITH 24-WEEK-SIZED FIBROID UTERUS, CHILD BEARING IS COMPLETE, HEAVY MENSTRUAL BLEEDING, AND BULK SYMPTOMS. BEST TREATMENT OPTION IS HYSTERECTOMY, A QUOTE FROM AN INTERVIEW WHERE A PATIENT SHARED THEY VIEWED MY UTERUS LIKE IT WAS A USELESS ORGAN, WHY DO YOU WANT TO KEEP IT? SAID, BECAUSE IT'S MINE. SO FOR THIS PATIENT, YOU KNOW, EVEN THOUGH IT WAS A VERY REASONABLE RECOMMENDATION FROM A MEMORIAL STANDPOINT TO SAY, OKAY, YOU'RE DONE WITH CHILD BEARING, YOU'RE HAVING SIGNIFICANT ANEMIA FROM YOUR BLEEDING, WE THINK THE BEST TREATMENT IS A HYSTERECTOMY, THAT PATIENT IS LIKE, MY UTERUS IS NO DIFFERENT TO ME THAN MY ARM OR MY LEG OR MY HEAD. I WANT TO KEEP IT BECAUSE IT'S AN INTEGRAL PART OF ME. SO UNDERSTANDING THAT AS WE THINK ABOUT HOW WE WANT TO BROACH DISCUSSIONS AND PROGRAMMATIC DEVELOPMENT AROUND ENGAGING PATIENTS WITH HEAVY MENSTRUAL BLEEDING, FROM A PROVIDER PERSPECTIVE, AGAIN, WE SEE FIBROIDS AS A CERTAIN SIZE, WHERE THEY ARE IN THE UTERINE WALL, AND PATIENTS SEE THEM AS A COMPLICATED AMALGAM OF TERMS THEY ARE NOT FAMILIAR WITH. THEY MAY OR MAY NOT BE FAMILIAR WITH. HOPES, DREAMS, PLANS, PROCEDURES, PILLS. AND THIS IS A WORD TREE FROM THOSE 60 ONE-ON-ONE INTERVIEWS, WHERE FIBROIDS ARE THE STANDOUT, BUT WE SEE THAT PATIENTS -- YOU KNOW, THIS IS A GOOD SNAPSHOT, IF YOU WILL, OF WHAT THE PATIENTS ARE EXPERIENCING. WHAT ELSE ARE THEY TELLING US? THEY ARE TELLING US THAT THERE'S A DISCONNECT BETWEEN PRESSURE TO HAVE CERTAIN PROCEDURES AND A LACK OF DISCUSSION AROUND FULL TREATMENT OPTIONS. AGAIN, THIS GETS AT THE PATIENT'S PREFERENCE. WE'VE ALREADY TALKED ABOUT KEEPING THE UTERUS -- HAVING A DOCTOR TELL YOU TO REMOVE YOUR UTERUS THAT WAS EMOTIONALLY SCARRING FOR ME, AND OTHER COMMENTS ON HYSTERECTOMY, BUT ALSO FRUSTRATION IN THE OPPOSITE EXTREME OF LACK OF SHARING OF TREATMENT OPTIONS. SO THE DOCTOR IS GOING TO HAVE A HYSTERECTOMY, DIDN'T PRESENT ALL OPTIONS AVAILABLE, SO I WAS LIKE FACED WITH KIND OF CHOICE, I WILL JUST KEEP THEM. IF PATIENTS IN OUR OFFICE ARE NOT LIKING WHAT WE'RE TELLING THEM, THEY DO GO ELSEWHERE. AND SOMETIMES IT'S THE EMERGENCY ROOM. MANY TIMES IT'S THE EMERGENCY ROOM AND WE DID AN ANALYSIS OF THE NATIONAL EMERGENCY DEPARTMENT SAMPLE DATA WHICH IS AHRQ DATA ON A WEIGHTED SAMPLE OF U.S. EMERGENCY ROOM VISITS, REFLECTIVE OF 130 MILLION E.D. VISITS IN THE UNITED STATES EACH YEAR. AND SO WHAT WE SEE, WHAT WE FOUND WAS THAT THERE ARE ABOUT 60,000 E.D. VISITS FOR SPECIFICALLY ABNORMAL UTERINE BLEEDING OF THE HEAVY MENSTRUAL BLEEDING SUBTYPE, WITH DECREASING NUMBER OF THOSE REQUIRING ADMISSION, MEANING THAT PATIENTS OR SUGGESTING I SHOULD SAY THAT PATIENTS ARE GOING TO THE E.D. FOR CARE THAT THEY COULD BE GETTING AND LIKELY SHOULD BE GETTING IN A TRUSTED SPACE, IN A TRUSTED RELATIONSHIP WITH THEIR PROVIDER. AND AS WE HEARD IN THESE INTERVIEWS, AS THIS DATA SUGGESTS, IF THEY ARE NOT HEARING WHAT THEY WANT TO HEAR IN THEIR -- AS THEY ENGAGE WITH THEIR PHYSICIAN WITH WHICH THEY HAVE A RELATIONSHIP, THEN THEY WILL GO ELSEWHERE. AND IF IT'S NOT THE E.D., THEN THEY WILL GO TO SOME NON-MEDICAL SOURCES THAT WHILE WE IN GENERAL CERTAINLY ARE SUPPORTIVE OF HOLISTIC AND ALTERNATIVE APPROACHES TO HEAVY MENSTRUAL BLEEDING, WE GET CONCERNED WHEN WE SEE THESE TYPES OF ADS WHERE THERE ARE PROMISES OF HEALING THAT REALLY ARE TOO GOOD TO BE TRUE AND LIKELY ARE TOO GOOD TO BE TRUE. SO, AS WE ALSO THINK ABOUT HOW DO WE PROVIDE THAT IDEAL PATIENT EXPERIENCE OR THAT PATIENT-CENTERED EXPERIENCE FOR WOMEN WITH HEAVY MENSTRUAL BLEEDING, WHAT DOES THAT LOOK LIKE? WE HAVE TO THINK ABOUT EMOTIONAL SUPPORT. SO ONE OF THE PUBLICATIONS THAT WE HAVE IN THE LITERATURE REALLY FOCUSES ON THE EMOTIONAL AND PSYCHOSOCIAL HEALTH ISSUES OF WOMEN WITH FIBROIDS IN PARTICULAR, BUT FIBROIDS RELATED -- ABNORMAL UTERINE BLEEDING. YOU SEE PATIENTS STRUGGLING WITH NOT ONLY THEMSELVES AND THEIR JOBS, BUT WITH FAMILY MEMBERS WHO ARE WONDERING WHY THEY ARE NOT JUST HAVING A HYSTERECTOMY AND MOVING ON, OR PATIENTS THAT ARE FEELING ISOLATED. I THINK THERE'S THIS ASPECT TO HAVING FIBROIDS THAT SOME WOMEN FEEL IS A SECRET TOPIC AND YOU DON'T DISCUSS IT UNTIL YOU'VE HAD THE SURGERY. I THINK THERE NEEDS TO BE MORE COMMUNICATION SO WOMEN FEEL COMFORTABLE JUST TO TALK ABOUT IT. WHAT WE FOUND WAS THAT IN THE CONTEXT OF FIBROIDS AND HEAVY MENSTRUAL BLEEDING ALMOST ALL OF THE WOMEN REPORTED PSYCHOLOGICAL DISTRESS, WITH REGARD TO THEIR FIBROIDS AND BLEEDING. ABOUT HALF THE WOMEN SAID THAT THEY REPORTED FEELING HELPLESS IN THAT SPACE. A LITTLE MORE THAN A THIRD REPORTED A NEGATIVE BODY IMAGE, NECK FEELINGS TOWARD SEXUALITY. AND ABOUT 25% FELT LIKE THEY HAD A LACK OF SUPPORT, EVEN THOUGH THEY SAID, YOU KNOW, MANY OF THEM REPORTED I KNOW MY PARTNER IS TRYING TO SUPPORT ME, I KNOW MY FAMILY IS TRYING TO SUPPORT ME, BUT I REALLY FEEL ISOLATED IN THIS SPACE. LASTLY, I WANT TO TALK ABOUT INFORMATION AND EDUCATION. I THINK INFORMATION AND EDUCATION ARE CERTAINLY NOT SUFFICIENT, PER SE, BUT THEY ARE ESSENTIAL IN HELPING PATIENTS NEGOTIATE THIS SPACE. SO, AS KRISTEN ALLUDED TO, PATIENTS NEED TO FIRST UNDERSTAND WHAT NORMAL IS BEFORE THEY CAN REALIZE THAT WHAT THEY ARE EXPERIENCING MIGHT BE ABNORMAL. TRYING TO UNDERSTAND WHY THERE WAS SUCH A DELAY IN PRESENTATION FOR HEAVY MENSTRUAL BLEEDING SYMPTOMS RELATED TO FIBROIDS WE TALKED TO PATIENTS ABOUT THAT, ABOUT WHY IT WAS THREE YEARS, WHY IT WAS FIVE YEARS, WHY IT WAS TEN YEARS IN SOME CASES THEY WENT IN. THEY SAID MY PERIOD LASTS FOR 30 DAYS, HEAVY AND HORRIBLE. I WAS WEARING PADS LIKE THE SIZE YOU GET IN THE HOSPITAL AFTER YOU HAVE A BABY. AND I WAS SO USED TO THAT HAPPENING THAT AT THAT TIME I DIDN'T CALL ANYBODY BECAUSE, YOU KNOW, IT WAS LIKE THIS IS NORMAL. YOU KNOW, THIS IS ONE QUOTE BUT IT IS A QUOTE THAT'S REPRESENTATIVE OF SO MANY WOMEN WHO ARE STRUGGLING WITH THIS. WHEN WE TALK TO THEM ABOUT HAVE YOU HEARD OF FIBROIDS, HAVE YOU HEARD OF KIND OF HEAVY MENSTRUAL BLEEDING PER SE, THEY -- A LOT OF THEM WERE QUITE -- WERE QUITE CONCERNED AND QUITE UPSET. AND WE REMOVED SOME OF THE EXPLETIVES FROM THE QUOTE, BUT WHEN WE ASKED ONE PATIENT, EXCUSE ME, ONE PARTICIPANT WHO WAS A Ph.D. SHE SAID, EXCUSE ME, A MASTER'S DEGREE, NO, I HAD NOT, WITH A BACHELOR'S AND MASTER'S DEGREE IN SCIENCE AND CHEMISTRY I HAD NOT. THINKING BACK TO ANATOMY AND PHYSIOLOGY CLASSES WE TALKED ABOUT HAVING BABIES, TALKED ABOUT DIFFERENT FORMS OF CANCER, BUT DO THEY EVER MENTION A FIBROID? I DON'T THINK SO. THERE'S SIMILAR QUOTES ABOUT DID THEY -- YOU KNOW, WHAT IS NORMAL FOR HEAVY MENSTRUAL BLEEDING? AND THEN, YOU KNOW, WOMEN ARE USING COPING STRATEGIES AND WE'VE SEEN THAT OVER THE COURSE OF THE LAST TWO DAYS. TO NORMALIZE WHAT'S HAPPENING. THIS IS WHAT YOU GO THROUGH AS A WOMAN. THAT WAS A REPEATED THING. IT'S LIKE EVERY MONTH YOU'RE GOING TO BLEED HALF TO DEATH AND THEN THE REST OF THE TIME YOU'RE ALMOST OKAY. I JUST WENT WITH THAT. YOU KNOW, IT DIDN'T KILL ME SO I'LL JUST BE STRONGER. SO ONE OF THE THINGS THAT HAS COME OUT OF THIS IS THAT WE, YOU KNOW, WE HAVE TO ENCOURAGE AND EMPOWER WOMEN TO SET A HIGHER BAR FOR THEMSELVES. SO BLEEDING HALF TO DEATH EACH MONTH SHOULDN'T BE THE BAR THAT WOMEN ARE SETTING FOR THEMSELVES. AND PART OF THAT STARTS WITH KNOWLEDGE AROUND WHAT IS NORMAL. SO IN THIS SURVEY STUDY OF ABOUT A LITTLE OVER 250 AFRICAN-AMERICAN WOMEN IN CHICAGO, WE -- EXCUSE ME -- WE ASKED THEM ABOUT THEIR OWN -- THEIR KNOWLEDGE AROUND PREVALENCE, THEIR OWN EXPERIENCES, AND FOUND OUT THAT OF THIS COHORT THAT IT WAS JUST RECRUITED AT A COMMUNITY FAIR, THE SURVEY WAS PRESENTED AS JUST A SURVEY ON WOMEN'S HEALTH, NOTHING SPECIFIC ABOUT PROMOTING THE SURVEY IN TERMS OF HEAVY MENSTRUAL BLEEDING. 40% OF WOMEN REPORTED THAT THEY HAD SEEN A CLINICIAN FOR HEAVY MENSTRUAL BLEEDING, 30% HAD BEEN TREATED. YET WHEN WE LOOK AT ISSUES AROUND THEIR ATTITUDES TOWARD BLEEDING AND SELF EFFICACY AROUND HEAVY MENSTRUAL BLEEDING, IT SHOWS A SENSE OF DISEMPOWERMENT IN THAT SPACE. AND FURTHERMORE, WHEN WE ASKED WOMEN ABOUT HOW THEY RANK THEIR BLEEDING, HOW THEY DESCRIBE THEIR BLEEDING SUBJECTIVELY AND DREW BLOOD TO SEE HOW THAT CORRELATED WITH THEM BEING ANEMIC OR HAVING LOW IRON, WE FOUND THAT, YOU KNOW, IF -- FOR THE WOMEN WHO DID REPORT HAVING HEAVY MENSES THEY HAD EIGHT TIMES HIGHER RISK OF BEING ANEMIC THAN WOMEN WHO REPORTED A LIGHT TO NORMAL FLOW, WHICH SAYS, YOU KNOW, A LOT OF WOMEN DON'T RECOGNIZE THAT THEIR BLEEDING IS HEAVY BUT IF THEY DO WE NEED TO FOLLOW UP AND TEST THEM AND CHECK LEVELS. SO, IN SUMMARY, WE TALKED ABOUT FIBROIDS, BUT AGAIN THE FOCUS HERE BEING HEAVY MENSTRUAL BLEEDING OR ABNORMAL UTERINE BLEEDING OF HEAVY MENSTRUAL SUBTYPE, WOMEN NEED TO KNOW WHAT NORMAL MENSTRUAL CYCLE PARAMETERS ARE IN ORDER TO HELP THEM RECOGNIZE THAT THEY ARE HAVING ABNORMAL UTERINE BLEEDING. IF SHE DOES REPORT HEAVY MENSTRUAL BLEEDING SHE LIKELY NEEDS TO BE FOLLOWED UP AND NOT DISMISSED. AND WE NEED TO -- IN ADDITION TO THE NEW THERAPEUTIC INTERVENTIONS THAT ARE COMING DOWN THE PIKE, WE ALSO HAVE AN OPPORTUNITY AND RESPONSIBILITY TO KIND OF REVAMP THIS ENTIRE PATIENT EXPERIENCE, MAKING IT MORE PATIENT CENTERED AND MOST IMPORTANTLY MORE PATIENT EMPOWERING. THANK YOU VERY MUCH. [APPLAUSE] >> ALL RIGHT. IF ALL THE SPEAKERS WOULD PLEASE COME TO THE FRONT TABLE. ALL RIGHT. THANK YOU FOR A REALLY, REALLY INTERESTING START TO THE MORNING. A QUESTION RIGHT THERE. >> SO, A WONDERFUL START TO THE DAY, AND THREE WONDERFUL PRESENTATIONS. THANK YOU ALL VERY MUCH. SO I'VE GOT A QUESTION SORT OF CROSSES PROBABLY MISSY'S TALK AND ERICA'S TALK. I ABSOLUTELY AGREE THERE'S SO MANY WOMEN AND, YOU KNOW, IT'S THE SAME IN THE U.K. YOU KNOW, THEY JUST DON'T THINK THAT THEIR EXTRAORDINARY LOSSES ARE NOT NORMAL BECAUSE THEY THINK THAT'S WHAT EVERYBODY EXPERIENCES. SO, I WONDER IF THIS SORT OF YOUNGER GENERATION NOW, AND THE PEOPLE MOVING TO USING APPS, THEY MAY END UP SHARING MORE AMONGST THEMSELVES THE EXPERIENCE. AND -- YOU KNOW, AS WE TALKED ABOUT WITH THE PADS, WITH THE DAYS FOR GIRLS, YOU KNOW, BEING MORE AWARE THAT, YOU KNOW, DIFFERENT PEOPLE HAVE DIFFERENT EXPERIENCES, SO DO THE APPS, BECAUSE I'M NOT VERY FAMILIAR WITH THEIR CONTENT. DO THEY GIVE -- YOU KNOW, THEY MAY DO TIMING, BUT DO YOU THINK THAT'S GOING TO BE AN OPPORTUNITY TO RAISE AWARENESS OF PEOPLE THAT -- YOU KNOW, THEIR EXPERIENCE OF THEIR LOSS, SO THAT, YOU KNOW, INSTEAD OF, YOU KNOW, JUST AS YOU WAIT TEN YEARS TO BE DIAGNOSED WITH ENDOMETRIOSIS, MANY OF OUR PATIENTS WHEN THEY COME AND YOU SAY HOW LONG HAVE YOU HAD THIS COMPLAINT, YOU KNOW, WE'VE GOT TO STUDY WHERE, YOU KNOW, AS MANY AS ERICA SHOWED YOU, MANY, MANY, MANY YEARS BEFORE YOU SEEK HELP AND MANY, MANY, MANY YEARS OF ANEMIA AND SUBOPTIMAL HEALTH AS A CONSEQUENCE OF THAT. SO DO YOU THINK THE APPS COULD HELP WOMEN AS WE GO FORWARD TO SORT OF BE MORE AWARE THAT THEY MIGHT NEED TO RECOGNIZE THEIR LOSSES ARE HEAVY? >> I THINK THAT'S A MULTI-TIERED QUESTION. WE'VE GOT THE OLDER PERSON MAYBE MORE SYMPTOMATIC, AND THEN THIS YOUNGER GENERATION. WHAT I THINK IS SO FASCINATING AND WHY WE'RE TARGETING THE MOMS IS THAT THE YOUNGER CHILD IS LEANING INTO HER MOM. THAT WAS REALLY CLEAR IN OUR FOCUS GROUPS. SHE'S LOOKING TO HER MOM FOR THE GUIDANCE. IF YOU'RE IN A FAMILY SITUATION WHERE THE MOM HAS FIBROIDS, GRANDMA HAS FIBROIDS, AUNT HAS BEEN FIBROIDS, WE HEAR OVER AND OVER THIS IS JUST WHAT YOU'RE GOING TO DO, IT WILL BE LIKE THIS FOR YOU, WHEN YOU'RE OLD ENOUGH YOU'LL HAVE A HYSTERECTOMY OR SOMETHING. ON THE OTHER HAND YOU'VE GOT GREAT PEER-TO-PEER MODELS IN SEXUAL HEALTH, OPPORTUNITY WITH DIGITAL NATIVES ON LINE ALL THE TIME TO CREATE SEDUCTIVE POWERFUL MEASURING STANDING UP MORE MENSTRUAL HEALTH. IT NEEDS TO GO BOTH WAYS. FROM THE MOTHER TO THE DAUGHTER AND RECOGNIZING ONE OF THE MOST COMPELLING MESSAGES IN OUR FOCUS GROUPS TO THE MOMS TO BE PRO-ACTIVE TO OBSERVING THEIR DAUGHTERS WAS FEAR. LIKE JUST BECAUSE I'M THIS WAY, WHATEVER SYMPTOMS YOU HAD, BLEEDING OR BLADDER ISSUES, I DON'T WANT HER TO END UP LIKE ME. SO MAYBE WE CAN MOBILIZE THAT. >> I THINK THERE'S CERTAINLY THE POTENTIAL FOR THE APPS TO TRANSFORM NOT ONLY HOW WOMEN ARE TRACKING THEIR CYCLES BUT THE OTHER SYMPTOMS THAT GO ALONG WITH IT. I THINK THE CHALLENGE IS DEMOGRAPHIC THAT USES -- THAT IS GOING TO USE AN APP TO TRACK HEALTH ISSUES. YOU KNOW, STUDIES -- AND ALSO THE DEMOGRAPHIC THAT'S BEING TARGETED. I THINK A LOT OF WOMEN ARE SINGLE. A LOT OF WOMEN DON'T HAVE CHILDREN. A LOT OF WOMEN DON'T LIKE USING TECHNOLOGY FOR HEALTH ISSUES, AND SOME OF THAT TRACKS WITH RACE, SOME TRACKS WITH SOCIOECONOMIC STATUS, SOME OF THAT TRACKS WITH EDUCATION. I THINK THAT CAN BE OVERCOME, BUT WE WANT TO BE CAREFUL TO NOT -- WELL, WE WANT TO BE CAREFULLY WOULD SAY TO BE AWARE THAT WE'RE CERTAINLY NOT GOING TO CAPTURE -- WE KNOW WE'RE NOT GOING TO CAPTURE EVERYBODY BUT MAY DISPROPORTIONATELY MAY NOT BE CAPTURING A CERTAIN COHORT OF WOMEN IF WE RELY HEAVILY ON APPS. I ALSO THINKS THIS IS WHERE KRISTEN'S WORK BECOMES IMPORTANT BECAUSE IF YOU'RE USING AN APP, THE APP HAS TO HAVE SOME WAY OF SAYING, YOU KNOW, THAT THIS IS NORMAL OR THAT THIS IS NOT NORMAL, TO TELL THE USER, JUST AS WE DO IN THE -- YOU KNOW, IN THE CLINICIAN'S OFFICE. AND SO I THINK COMBINING KRISTEN'S WORK WITH MISSY'S WORK WITH ALSO ASKING A PATIENT, REALIZING AS PHYSICIANS IT'S NOT ENOUGH TO SAY IS YOUR PERIOD NORMAL, WHAT A LOT OF DOCS DO NOW. YOU KNOW, WHICH IS SAY YOUR PAIN IS NORMAL EACH MONTH. BECAUSE WHAT PATIENTS ARE THINKING WHEN WE SAY THAT IS, IS IT CONSISTENT? IS IT THE SAME EACH MONTH VERSUS IS IT NORMAL? IT'S NORMAL FOR ME TO HAVE TO STAY HOME THREE DAYS EVERY MONTH, OR A WEEK EVERY MONTH. SO, YES, MY PERIODS ARE NORMAL. SO, I THINK THAT THERE'S A LOT OF POTENTIAL. I THINK WE'RE GOING TO HAVE TO BE CAREFUL TO MAKE SURE WE'RE REALLY CAPTURING AND ENCOURAGING A WIDE CROSS-SECTION OF WOMEN TO TAKE UP THAT TECHNOLOGY THOUGH. >> I'M GOING TO ROTATE BETWEEN PEOPLE ON THE LINE AND IN THE ROOM. >> GOOD MORNING. FANTASTIC PRESENTATION. YOU PROVIDED SUCH GREAT INFORMATION. I HAVE A FEW COMMENTS. KRISTEN, DON'T FEEL BAD ABOUT YOUR SLIDE WITH ALL THE BLOOD BECAUSE I OFTEN POST A SLIDE OF THE MONTH, AND A MONTH WHERE I BLED EVERY DAY THROUGH AN ENTIRE LARGE OVERNIGHT PACKAGE OF KOTEX BEFORE THEY REMOVED A TWO CENTIMETER PEDUNCULAR FIBROID WAS WREAKING HAVOC SO USE THE SLIGHT AT WILL BECAUSE IT'S ACCURATE. >> (INAUDIBLE). >> I WONDER IF IN TERMS OF HEMOGLOBIN ONE OF THE THINGS I THINK ABOUT WHEN TRYING TO COMMUNICATE HOW MUCH BLOOD LOSS IS THAT WHEN I WAS HEMORRHAGING SEVERELY, MY HEMOGLOBIN COULD DROP ONE POINT IN LESS THAN TWO DAYS. SO, FOR FOLKS WHO ARE LOOKING FOR MORE DATA, MORE SPECIFIC ANALYTICS, THAT MIGHT RESONATE A LITTLE BIT MORE. I DIDN'T KNOW IF WE COULD START TO DEVELOP ANY CONVERSATIONS AROUND DEFINING IT MAYBE USING SOMETHING LIKE THAT. I DON'T KNOW IF THAT'S WORTHWHILE OR NOT. >> I JUST LOOKED UP iPHONE APPS. (INAUDIBLE). >> ERICA, I CAN'T BELIEVE I'M IN THE ROOM WITH YOU FOR SO MANY MEETINGS AND DID NOT KNOW YOU HAD ALL THOSE FANTASTIC SLIDES BECAUSE I GUESS YOU'RE NOT USUALLY PRESENTING. BUT I WILL BE CALLING YOU TO SEE IF WE CAN PARTNER ON THOSE. BUT YOU BROUGHT UP A GREAT POINT OF THE E.R. DOCTORS AND KIND OF LOSING THE PATIENT TO HAVING THEM FURTHER ALIENATED FROM GETTING GOOD CARE. AND I JUST WANTED TO ADD TOO THAT SADLY AN E.R. DOCTOR MAY BE VERY WELL INTENDED BUT DON'T DO PELVIC EXAMS EVERY DAY. IMAGINE HEMORRHAGING, GOING TO THE E.R., I'VE BUMPED INTO WOMEN WHEN I WAS IN THE E.R. WHO ARE ALSO THERE FOR HEAVY MENSTRUAL BLEEDING, IT'S JUST A SPECIAL HELL TO GET A PELVIC EXAM IN THE E.R. BY SOMEONE WHO IS NOT REALLY SKILLED IN THAT WHEN YOU'RE HEMORRHAGING. AND THEN MY LAST COMMENT IS IN TERMS OF ANEMIA YOUR BODY ADJUSTS SLOWLY SOMETIMES TO ANEMIA SO LIKE WHEN I WAS IN MY 30s I COULD BOUNCE RIGHT BACK AND DIDN'T REALLY -- DIDN'T REALIZE I WAS AT AN 8 OR 9 BUT THEN IN MY 40s IT IMPACTED ME MUCH, MUCH, MUCH MORE. SO I THINK WHAT WE'RE FACING IS THAT SOME WOMEN LIKE YOU'VE ALL SAID FACING THESE SYMPTOMS, THEY DEAL WITH THEM EVERY DAY, AND THEIR BODY IS JUST KIND OF SLOWLY CALIBRATING DOWN TO THAT LOW OXYGEN INTAKE, AND THEY DON'T REALIZE THAT WHAT'S GOING ON, AND A LOT OF WOMEN DON'T EVEN REALLY UNDERSTAND THE DYNAMICS OF ANEMIA. SO IT'S REALLY IMPORTANT. BUT THANK YOU VERY MUCH. GREAT PRESENTATIONS. >> THANK YOU. I THINK, YOU KNOW, IT'S FUNNY YOU -- I GOT TO THE POINT WHERE I WAS EXCITED TO HAVE A PATIENT THAT HAD A HEMOGLOBIN AS HIGH AS 8 OR 9 BECAUSE I WAS ASKING PATIENTS, IT GOT TO THE POINT, I'M SURE YOU'VE SEEN THIS, WHERE YOU'RE ASKING PATIENTS IF THEY HAD NORMAL PERIODS, THEY SAY, YOU KNOW, YES. YOU HAVE FIBROIDS ON EXAM. AND YOU'RE TACHYCARDIC, LED ME CHECK. THEY LEAVE AND GO HOME, YOU GET STAT CRITICAL PAGE FROM THE LAB WITH HEMOGLOBIN OF 5.5, AND NOW YOU HAVE CHEST PAIN AS A PROVIDER. [LAUGHTER] AND, YOU KNOW, THE PATIENT, YOU CALL THE PATIENT, I NEED YOU TO COME IN AND GET A BLOOD TRANSFUSION. THEY ARE LIKE, DR. MARSH, I'M NOT COMING IN. I'VE TAKEN TWO BUSES, GONE HOME. WE HAVE A FOLLOW-UP APPOINTMENT. I'LL SEE YOU IN A COUPLE WEEKS. I REALLY NEED YOU TO COME IN. THEY ARE LIKE, YEAH, I'M HOME NOW, I'M GOOD. AND, YOU KNOW, YOU'RE IN THIS SPACE AS A PROVIDER WHERE YOU'RE JUST LIKE YOU KNOW THEIR HEMOGLOBIN DIDN'T DROP THAT ACUTELY OR THEY WOULD NOT BE ALIVE WITH A DROP THAT LOW, BUT IT'S AMAZING HOW SYMPTOMATICALLY WOMEN, YOU KNOW, THEY JUST -- THEY WALK TEN PACES AND STOP BECAUSE THEY HAVE TO CATCH THEIR BREATH, LET THEIR HEART RATE SLOW DOWN. THAT BECOMES A NORMAL PATTERN THAT THEY DEVELOP WITHOUT THINKING THAT THIS PROBABLY ISN'T NORMAL. IT'S NOT NORMAL FOR ME TO HAVE TO WALK UP THREE STAIRS AND THEN STOP ON THE STAIRWELL, CATCH MY BREATH, WALK UP ANOTHER THREE STAIRS, STOP ON THE STAIRWELL AND CATCH MY BREATH, THAT I NEED TO ALLOW AN EXTRA 40 MINUTES FOR A WALK THAT USED TO TAKE ME 5 MINUTES. SO, YEAH. >> I THINK YOU HIGHLIGHTED ONE OF THE BIG OPPORTUNITIES HERE. IT'S ONE OF THE OPPORTUNITIES I THOUGHT ABOUT A LOT WHEN I WAS DEVELOPING THIS TALK IS SORT OF MOVING AWAY FROM WHAT WE'VE DONE BY THEN MOVING FORWARD TO THINK ABOUT WHAT ARE THE OPPORTUNITIES OUT THERE. AND I THINK THE OPPORTUNITIES, I HAD THIS AS ONE OF MY SLIDES, PRESSED FOR TIME AND TOOK IT OUT, BUT OPPORTUNITIES ARE ENDLESS WITH EVOLVING TECHNOLOGY WHERE WE'RE MOVING AWAY FROM JUST THINKING ABOUT HERRY MENSTRUAL BLEEDING IN THE CLINICAL CONTEXT, REALLY THE ONLY PLACE WE COULD REACH WOMEN BECAUSE WE COULDN'T REACH WOMEN IN THE COMMUNITIES AND IN THEIR HOMES WITH HEAVY MENSTRUAL BLEEDING AND NECESSITATED THEY RECOGNIZE WHAT THEY HAD WAS ABNORMAL, THEY CAME INTO THE OFFICE AND WE WOULD EVALUATE THEM. BUT NOW WITH THESE NEW APPS, WITH INCREASING FOCUS INCORPORATING PATIENT-REPORTED OUTCOME MEASURES TO BE COLLECTED ELECTRONICALLY AT HOME ON SMARTPHONES AND COLLECTED WITHIN ELECTRONIC MEDICAL RECORDS WE'RE MOVING OUT OF THE CLINICAL CARE ARENA, MOVING MORE TOWARDS EARLY IDENTIFICATION AND POTENTIALLY PREVENTION OF FUTURE PROBLEMS BECAUSE I HONESTLY THINK IF WE CAN GET TO WOMEN SOONER IN THEIR TRAJECTORY OF HEAVY MENSTRUAL BLEEDING AND TREAT THEM EFFECTIVELY, WE MAY ACTUALLY HAVE AN IMPACT ON THE NUMBER OF HYSTERECTOMIES WE PERFORM BECAUSE WHAT HAPPENS IS WOMEN HAVE SUFFERED FOR SO LONG WITH HEAVY MENSTRUAL BLEEDING BY THE TIME THEY COME IN FOR CARE, THEY WANT DEFINITIVE MANAGEMENT. THEY DON'T WANT TO TRY SOMETHING THAT WON'T BE 100% EFFECTIVE SO I THINK THAT THE OPPORTUNITIES ARE ENDLESS, NOT JUST FOR TREATING IN THE CLINICAL CONTEXT BUT GETTING OUT TO THE COMMUNITIES TO IDENTIFY WOMEN EARLIER, GET THEM PARTNERED WITH THE BEST INDIVIDUAL TREATMENT OPTION FOR HER AS A PERSON BASED ON HER PREFERENCES AND VALUES AND PREDISPOSING CONDITIONS AND REALLY MOVE AHEAD TO IMPROVING POPULATION HEALTH FOR HEAVY MENSTRUAL BLEEDING, IT'S SUPER EXCITING TIME. >> ACTUALLY THERE'S AN ONLINE QUESTION THAT KIND OF FOLLOWS ON THAT. SO I'M GOING TO ASK IT NOW. THE QUESTION IS, IS THERE A PROBLEM WITH THE TERM HEAVY MENSTRUAL BLEEDING, AS WELL LIGHT BLEEDING, WHEN PEOPLE ARE ACTUALLY EXPERIENCING CHANGES IN BLOOD DURATION, VOLUME, FREQUENCY, PREDICTABILITY, SO KIND OF THE STATIC VERSUS DYNAMIC DESCRIPTION? HAVE Y'ALL THOUGHT ABOUT THAT? >> I THINK THE MENSTRUAL DISORDERS COMMITTEE FROM THE INTERNATIONAL FEDERATION OF GYNECOLOGISTS AND OBSTETRICIANS ARE GIVEN A LOT OF THOUGHT, IN TERMS OF FREQUENCY, DURATION, REGULARITY AND VOLUME EVOLVED FROM THE DIFFERENT LATIN TERMS, MENORAGGHIA, ALGO-MENORAGGHIA, THIS IS IN MULTIPLE PUBLICATIONS. I THINK THESE TERMS ARE NEWER BUT THEY AREN'T EXACTLY MEASURES OUT THERE THAT PUT PEOPLE INTO THOSE BUCKETS. I THINK IT WAS MY THIRD SLIDE I SHOWED WHAT NORMAL IS IN TERMS OF FRABS, REGULARITY, DURATION OF MENSTRUAL BLEEDING. THAT'S ONE WAY WE SHOULD BE MOVING. WHAT'S GOOD ABOUT DESCRIBING BLEEDING IT KEEPS EVERYBODY ON THE SAME PAGE IF YOU HAVE THE DIMENSIONS AND WE AGREE WITH WHAT FREQUENT, INFREQUENT AND ABSENT IS, WE AGREE ON THE SAME LANGUAGE, AND DURATION, TO STAY ON THE SAME PAGE F WE DESCRIBE HEAVINESS IN TERMS OF NATIONAL INSTITUTE OF CLINICAL EXCELLENCE DEFINITION, BLEEDING THAT INTERFERES WITH A WOMAN'S PHYSICAL, SOCIAL, MATERIAL QUALITY OF LIFE, WE'RE STAYING ON THE SAME PAGE. THERE'S ALWAYS ROOM FOR IMPROVEMENT IN TERMS OF HOW WE CAPTURE DATA BUT FOUR SIMPLE DIMENSIONS TO DESCRIBE AND INDIVIDUAL WOMAN'S BLEEDING MAKES SURE WE'RE ALL SPEAKING THE SAME LANGUAGE IN CLINICAL CARE AND RESEARCH. >> I WOULD AGREE WITH THAT. THINK PART OF THE CHALLENGE IS TAKING THE LANGUAGE THAT WOMEN USE EVERY DAY AND MAKING IT -- TRYING TO FACILITATE IT WORKING FOR -- TO FACILITATE RESEARCH AND PATIENT CARE. THAT'S ALWAYS GOING TO BE A CHALLENGE. AS I THINK ABOUT ABNORMAL UTERINE BLEEDING, HEAVY MENSTRUAL BLEEDING SUBTYPE, PART OF ME IS LIKE, WELL, WHY DON'T WE DO WHAT THE ENDOCRINE SOCIETY DID WITH HIRSUTISM, IF IT'S BOTHERING YOU IT'S HIRSUTISM. IF YOU HAVE MORE HAIR GROWTH, GROWING IN A PATTERN SUCH THAT IT'S BOTHERSOME TO YOU, IT'S HIRSUTISM AND THEY MOVED AWAY FROM THE FARRAH MEN GOLI TYPE PICTORIAL SCALES. THAT MAKES IT HARD TO DO COMPARATIVE RESEARCH ACROSS POPULATIONS. BUT THAT'S WHERE PATIENTS ARE. PATIENTS AREN'T -- THEY ARE NOT AS KRISTEN POINTED OUT NOT AT ADCCs, THEY ARE NOT OLIGO, YOU KNOW, AND AMENORRHEA. THAT'S NOT THE SPACE. AM I BLEEDING, I HAVE RUINED ANOTHER MATTRESS? DO I HAVE ENOUGH FEMININE HYGIENE PRODUCTS ON SUCH THAT I'M NOT GOING TO BE IN AN AWKWARD SITUATION PUBLICLY, AND WE HAVE TO MEET THEM WHERE THEY ARE TO -- AS WE DEVELOP AND THINK ABOUT THE COMMON LANGUAGE WE CERTAINLY HAVE TO MEET PATIENT WHERE THEY ARE, I WOULD SAY. I THINK A BIG PART STILL IS THAT NORMAL THING THOUGH. YOU KNOW, YOU CAN'T START WITH THIS NORMAL FOR YOU, BECAUSE THAT NORMAL MEANS VERY DIFFERENT THINGS TO VERY DIFFERENT WOMEN. >> THANK YOU. FIRST, THANK YOU SO MUCH FOR YOUR TALKS. THEY WERE BOTH REALLY SOPHISTICATED AND COMPASSIONATE. I APPRECIATED THEM. THE THING THAT I'M REALLY STRUCK BY OR THINKING ABOUT AS I WAS LISTENING TO ALL OF YOU SPEAK IS AS AN -- YOU KNOW, THERE'S THIS WAY IN WHICH I THINK YOU'RE DESCRIBING WOMEN WHO ARE UNDERGOING A LOT OF SUFFERING, DESCRIBING IT AS NATURAL OR EXPERIENCING IT, DESCRIBING IT OR EXPERIENCING IT AS NORMAL OR SOMETIMES BEING TOLD CLINICALLY THAT, NO, WHAT YOU'RE EXPERIENCING IS NORMAL AND ARE BEING DENIED SORT OF SOME KIND OF LABEL THAT MIGHT HELP THEM ALLEVIATE SUFFERING. AS AN ANTHROPOLOGIST, I OFTEN ENCOUNTER THE OPPOSITE GROUP, A LOT OF WOMEN WHO FEEL LIKE THEY ARE BEING PATHOLOGYIZED IN THEIR EXPERIENCE GOING TO THE DOCTOR SO THEY ARE GOING BECAUSE THEY DON'T KNOW, ASIDE FROM LOOKING AT DR. GOOGLE, DON'T KNOW A LOT ABOUT THEIR BODIES AND ARE HAVING EXPERIENCES, THEY DON'T KNOW IF THEY ARE NORMING, HOPING FOR COMFORT, INFORMATION, MAYBE LAYERS OF COMMUNICATION TO HELP THEM BETTER UNDERSTAND. THEY LEAVE WITH A BIRTH CONTROL PILL PRESCRIPTION INEVITABLY. WE'VE DONE QUALITATIVE WORK IN OUR LAB. ONE STUDENT INTERVIEWED A BUNCH OF PEDIATRICIANS, AND THEY SAID IF A GIRL COMES TO ME ASKING QUESTIONS ABOUT HER PERIOD, AND SAYS IT'S IRREGULAR, I ASSUME SHE'S SAYING THAT BECAUSE SHE WANTS BIRTH CONTROL PILLS BECAUSE SHE WANTS TO HAVE SEX SO I GIVE HER BIRTH CONTROL PILLS. AND THEY SAY THEY DO THAT WITH AS YOUNG AS 12-YEAR-OLD GIRLS, MAKE THIS ASSUMPTION THAT THEY ARE UNCOMFORTABLE SAYING I WANT TO BE SEXUALLY ACTIVE, AND INSTEAD THEY ARE SAYING -- SO THAT'S ACTUALLY NOT WHAT GIRLS ARE NECESSARILY COMING FROM, THEY ARE SAYING I DON'T UNDERSTAND MY BODY AND WANT MORE INFORMATION. I'M WONDERING IT'S HEARTBREAKING TO FEEL LIKE WOMEN ARE IN ONE OF THOSE TWO SPACES, HAVING EXPERIENCES DENIED AND THEN NOT GETTING TREATMENT THEY NEED, OR BEING MADE TO FEEL LIKE THEY ARE ABNORMAL OR PATHOLOGICAL WHEN THEY JUST WANT A BETTER EXPERIENCE. TALK ABOUT THAT. I'M CURIOUS ABOUT YOUR THOUGHTS ON THAT. >> WHAT I THINK IS SO EXCITING ABOUT THE WAY WE'RE GOING AND TALKING AND SPECIFICALLY TECHNOLOGY IS THERE'S A LOT OF DIFFERENT WAYS TO CUT AND -- DICE AND SLICE TECHNOLOGY, RIGHT? YOUR POINT IS VERY WELL TAKEN, SMARTPHONE USE ACCORDING TO PEW INSTITUTE IS RISING DRAMATICALLY, PUSHING ENVELOPE WITH AGE, I'M WATCHING MY 83-YEAR-OLD MOM WITH AN iPHONE, SHE CAN DATA, TEXT, SEND PHOTOS. WE'RE SURPRISED DOING OUR RECENT LISTENING TOUR FOR OUR GRANT HOW MANY WOMEN WERE INTERESTED IN WHAT WAS GOING ON, WHAT OTHER PEOPLE LIKE THEM LOOKED LIKE, UNDERSTAND THE CONTINUUM OF CARE, I COME AND GET PIGEON-OLD INTO HYSTERECTOMY OR THIS BLADDER THING, I WANT TO KNOW WHAT ELSE THERE WAS, MY DOCTOR WASN'T SAYING IT. THERE'S THE ABILITY AS A PROVIDER TO CURATE THAT DISCUSSION, EVEN BEFORE THEY COME IN. THEY HAVE A NEW PATIENT APPOINTMENT, WHAT WOULD IT BE LIKE TO HAVE A TOOL YOU COULD USE TO EXPAND ON THE CONVERSATION SO THAT THEY WALK IN READY TO GO, AND YOU'RE NOT HAVING TO LAY THE BASIC GROUND WORK FOR DIAGRAMMING WHAT THE PELVIS LOOKS LIKE AND WHAT A FIBROID MEANS AND HOW IT WORKS TOGETHER. THESE ARE OPTIONS WE CAN TALK ABOUT. NOW, THEY HAVE TO, AGAIN, HAVE THE ABILITY TO GET TO A COMPUTER BECAUSE THESE THINGS ARE NOT JUST ON THE PHONE. THEY CAN BE WEB BASED OR WRAPPED TO LIKE AN AN APP. IT BECOMES WHAT IS IT THAT IS MOST IMPORTANT TO YOU AND THEN DIALOGUE, WHAT IS MOST IMPORTANT TO YOUR PATIENT, AND HOW DO YOU MARRY THEM USING SOMETHING THEY CAN CARRY AROUND OR ACCESS MORE EASILY. >> WHAT MISSY IS TALKING ABOUT HITS THE NAIL ON THE HEAD. WHAT'S CHALLENGING NOW IS TO REALLY DELIVER PATIENT CENTERED CARE IN THE CURRENT HEALTH CARE ENVIRONMENT WHERE CLINICIANS ARE PRESSED TO SEE MORE AND MORE PATIENTS AND GENERATE MORE RVUs, THAT'S THE PIECE GETTING LOST. PATIENT COMES IN, GETS DIAGNOSED, TREATED. THIS IS WHERE I THINK SOME OF THESE ONLINE FORUMS AND TECHNOLOGIES THAT REALLY WORK HARD TO FIGURE OUT WHERE THE PATIENT IS AND WHAT THE PATIENT'S PREFERENCE IS AND INTEREST IS IN TERMS OF THEIR DISCUSSION WITH THE PROVIDER CAN HELP MAKE SURE THAT DOESN'T GET LOST BECAUSE I THINK IT IS HARD. CLINICIANS, WHEN YOU SEE A CLINICIAN, THE CLINICIAN OVERMEDICALLIZES SOMETHING, SO THAT'S A CHALLENGE BUT AT THE SAME TIME WE'RE OFTEN ASKED TO GIVE CARE. I THINK IT'S THIS DELICATE BALANCE REASSURING THE PERSON WHAT THEY ARE EXPERIENCING IS PHYSIOLOGICALLY EXPECTED, RIGHT? FOR MANY WOMEN IT'S PHYSIOLOGICALLY EXPECTED PERIODS WILL BE IRREGULAR, RIGHT? DURING THE TEEN YEARS AND THEN AS THEY APPROACH MENOPAUSE. BUT IF IT'S IMPACTING THEIR DAILY LIFE AND THEIR QUALITY OF LIFE, MAYBE THEY SHOULD BE TREATED AND SIMILARLY MAYBE THEY SHOULD BE EVALUATED TO MAKE SURE THEY HAVE SOMETHING UNDERLYING LIKE THE PALM-COIN. WE HAVE TO DEVELOP ADJUNCTS IN THE CURRENT CONTEXT OF CARE. >> SO REALLY WONDERFUL. I DON'T HAVE A PARTICULARLY WELL FORMED THOUGHT BUT I'M PUTTING IT OUT THERE . I LOVE THE USE OF APPS. I WANT TO USE MORE. I KEPT THINKING HOW DO WE KEEP LINKING WITH PHYSICIANS, BEFORE YOU SAID PHYSICIANS ARE SQUEEZED NOW, THEY NEED TO BE ABLE TO ANSWER THE THINGS. WHEN I WAS -- AND I WAS THINKING ABOUT WHAT ERICA SAID ABOUT THE PATIENT POPULATION WE'RE TALKING ABOUT AND WHO IS ONLINE AND NOT ONLINE, WHO DOESN'T WANT TO KNOW AND JUST WANT THE DOCTOR TO GUIDE THEM AND ISN'T ONLINE LOOKING FOR THOSE THINGS BECAUSE WHEN -- I GREW UP IN A HOUSEHOLD, MY FATHER IS A PHYSICIAN, IN PUBLIC HEALTH, CERTAINLY KNOWS ABOUT THE SPECTRUM. NOT AN OB/GYN. BUT WHEN I WAS IN THE PEACE CORPS I WENT FROM BEING EXTREMELY IRREGULAR, LIKE LINDA I'LL TALK ABOUT MY OWN EXPERIENCE, BUT MUCH EASIER. I WENT FROM SUPER IRREGULAR TO SOMETHING ABOUT BEING IN AFRICA, I'M GENERALIZING, PHEROMONES ARE LIKE OUT OF CONTROL, MY PERIOD IS SO REGULAR EVERY TIME I HINT THAT CONTINENT AND ALL THE FERTILITY. FIRST TIME IN EIGHT YEARS, MOVED TO HIGH ALTITUDE, STOPPED EATING MEAT BECAUSE IT WAS EXPENSIVE, AND IF HADN'T HAD THE BASELINE MEASURE THE PEACE CORPS MAKES YOU DO, STARTED GETTING OUT OF BREATH, WAS ANEMIC, 15 TO 12, ENOUGH. SO I'M JUST STRUCK FROM THAT EXPERIENCE BY THE FACT I GREW UP IN A MEDICAL HOUSEHOLD, THAT IF I HADN'T HAD THAT BASELINE 12 WOULD HAVE BEEN FINE. I DON'T THINK THE DOCTOR WOULD HAVE THOUGHT TO GIVE ME IRON PILLS. I JUST WONDER THERE WAS THIS GREAT ARTICLE A NUMBER OF YEARS AGO, MENSTRUATION, SHOULD WE BE USING MENSTRUATION AS A VITAL SIGN. I KEEP COMING BACK TO IT. THAT WOUL NORMALIZE IT. SHOULD WE BE TALKING ABOUT IT MORE? THAT WOULD BRING IT INTO THE REALM OF WHAT WE CONCEPTUALIZE IN DAILY LIFE. BUT LINKING THE TECHNOLOGY WITH THE CLINICALLY TRAINED PROVIDERS BECAUSE I FEEL LIKE I DON'T WANT TO LOSE THAT. I DON'T KNOW WHAT MY QUESTION IS BUT DON'T WANT TO SEE THAT LOST. IS THERE SOMETHING WE CAN BE DOING TO MAKE IT COME OUT OF THE DARK INTO THIS SORT OF COMMONNESS OF CONVERSATION? >> I THINK YES, WE NEED TO WORK TOWARD THAT. I ALSO JUST WANT TO MAKE A LITTLE CAVEAT. I THINK WE SHOULD NOT ASSUME THAT PEOPLE DON'T WANT TO KNOW BECAUSE THEY DON'T USE AN APP OR GO TO THE WEB. THERE'S A COMPONENT OF TRUST WE DON'T TALK ABOUT AS PART OF WHAT DRIVES HEALTH COMMUNICATION AND HEALTH ENGAGEMENT. AND THERE'S CERTAIN COMMUNITIES OR CERTAIN GROUPS WHO TRUST THE WEB LESS OR TRUST AN APP LESS THAN THEY DO DR. OZ OR OPRAH OR THEIR PASTOR OR THEIR, YOU KNOW, THEIR NEXT DOOR NEIGHBOR OR A FAMILY MEMBER. AND THEY MAY TRUST ALL OF THOSE FOLKS MORE THAN THEIR HEALTH CARE DELIVERY TEAM. SO, I JUST WANT TO BE CAREFUL THAT WE'RE NOT MAKING THE LEAP FROM FOLKS NOT WANTING TO KNOW THINGS JUST BECAUSE THEY MAY NOT -- THEY MAY CHOOSE NOT TO USE THE WEB. I THINK THAT THE MENSTRUAL CYCLE IS AN IMPORTANT WINDOW TO A WOMAN'S OVERALL HEALTH, AND ONE THAT HAS NOT BEEN LEVERAGED IN A WAY THAT WE SHOULD, AND THAT'S WHY THIS MEETING IS SO EXCITING BECAUSE I THINK WE DO NEED TO REVISIT, YOU KNOW, GO BACK TO THE BASICS AND TALK ABOUT THE MENSTRUAL CYCLE AS A VITAL SIGN. YOU KNOW, IS IT A MARKER FOR ANEMIA? IS IT A MARKER IN ALL THE THINGS THAT COULD BE RELATED TO AN ANEMIC STATE? IS IT A MARKER TO -- IS IT A WINDOW TO HORMONAL MILIEU, IS IT A WINDOW TO ALL THE THINGS THAT HAVE BEEN NICELY OUTLINED IN PALM COIN. IS IT A WINDOW TO COAGULOPATHY? FOR MANY HEALTH CARE PROVIDERS IT'S AN UNCOMFORTABLE TOPIC THEY KNOW THEY HAVE TO ASK ABOUT VERY QUICKLY AS THEY GO THROUGH A HISTORY, AND WE HAVE TO HIT THE PAUSE BUTTON A LITTLE BIT AND SAY I NEED TO SPEND MORE TIME ON THIS SPACE BECAUSE THIS IS A WINDOW TO SOMETHING MUCH, MUCH BROADER THAN A CHECK BOX. >> THANK YOU SO MUCH FOR SUCH FANTASTIC PRESENTATIONS. TWO QUESTIONS. THE FIRST, (INAUDIBLE) SEEMS LIKE THESE CONDITIONS ARE CONTRIBUTING FACTORS AND BY MEASUREMENT I'M SURE THERE'S A PARALLEL TRACKER OF RESEARCH. THE SECOND QUESTION IS ABOUT TRAINING HEALTH CARE PROVIDERS TO SCREEN. A PEDIATRIC PRACTICE WE GO TO (INAUDIBLE) ALSO SCREENED FOR (INAUDIBLE). MY THIRD COMMENT, WE HAVE SO FEW RITUALS FOR GIRLS, PARTIES, INSTEAD OF SWEET SIXTEENS. >> I JUST WANT TO SAY, I GREW UP WITH A WOMAN WHO -- NOW A WOMAN, WHEN WE WENT TO COLLEGE HER MOM WOULD SEND HER A RED PRESENT TO MARK THE ANNIVERSARY OF THE FIRST DAY OF HER PERIOD. SHE WAS HORRIFIED, I THOUGHT IT WAS FANTASTIC, I DO IT WITH MY OWN DAUGHTER WHO IS HORRIFIED. IT WAS INTERESTING TO THINK ABOUT THE ADOLESCENT MARKET WHERE WE STARTED TWO YEARS AGO HAS BEEN OVERLY FASCINATING. THERE REALLY IS THIS OVERWHELMING I JUST DON'T WANT TO DEAL WITH IT. I KNOW STRATEGICALLY WHAT I NEED TO DO, SHOVE IT OVER HERE AND IT'S SOMETHING I HAVE TO DO EVERY MONTH. AND MOST OF THE TIME IT'S PRETTY -- YOU KNOW, PRETTY NORMAL. NORMAL? SORRY. IT'S PRETTY UNREMARKABLE FOR THEM. AND THAT'S OKAY. EXCEPT THAT THERE ARE SYMPTOMS OF FIBROIDS AND HEAVY BLEEDING THAT SHOW UP YOUNG, AND THERE IS SOME DATA AROUND THAT AND STUDIES DONE, SO OF COURSE WE WOULD LOVE TO HAVE IT BE THE CASE THAT THEY WERE SO EXCITED ABOUT THIS EXPERIENCE THAT THEY ARE STARTING TO WAVE THE FLAG YOUNGER AND YOUNGER. I THINK THERE'S SUCH AN OPPORTUNITY THROUGH EVERY METHOD WE CAN THINK OF TO ARM THE GROWNUPS WHO ARE OBSERVING THEM AND WATCHING THEM AND WITH THEM TO START NOTICING. I DIDN'T REALIZE THIS COULD HAPPEN AT 12. I DIDN'T REALIZE I NEEDED TO PAY ATTENTION TO THIS. I SO NORMALIZED IT IN MY OWN EXPERIENCE IT'S NOT GOING TO BE A FACTOR. I DO THINK WE SHOULD BE HAVING PERIOD PARTIES REGULARLY. SEE THE FIRST MOON VIDEO IF YOU'VE NOT WATCHED THE FIRST MOON VIDEO. RED MOON VIDEO, RED MOON, ABOUT A GIRL WHO TRIES TO FAKE HER FIRST PERIOD. >> I WAS STRUCK BY THE FACT THAT A LOT OF THE WORK PRESENTED HERE INVOLVES GETTING THE PATIENT VOICE, IT'S VERY DIFFERENT THAN OBVIOUSLY WHEN YOU'RE INTERROGATING A SMALL MOLECULAR PATHWAY. ERICA, YOU'LL APPRECIATE THIS, NOW AT MICHIGAN. THERE WAS A COMMENT RAISED BY THE OWNER OF ZINGERMANS, FAMOUS IN ANN ARBOR, WISDOM IS IN THE ROOM, HIS COMPANY IS BUILT ON SELF-ENGAGEMENT BY THE STAFF. PATIENTS WHO ARE WOMAN, WE NEED TO DO MORE OF THIS FOCUS GROUP WORK, NOT JUST WITH THE ORDINARY INDIVIDUAL THAT'S JUST EASY TO OBTAIN OFF OF, YOU KNOW, A FEW ADS HERE AND THERE BUT NEED TO GET THE WISDOM OF WOMEN WHO HAVE BEEN THROUGH THE HARDEST AND MOST DIFFICULT PARTS. SOME PATIENT ADVOCATES, SOME IN THIS ROOM ACTUALLY. I WAS THINKING ABOUT THE EXPERIENCE IN CHRONIC PAIN, WE'VE TAKEN SOME OF THE MOST DIFFICULT CONCEPTS, TRIED TO GET VIDEO SHOT OF EXPERTS. WE DON'T HAVE PATIENT EXPERTS WHO CAN SAY I'VE ALREADY BEEN THROUGH 35 YEARS OF ENDOMETRIOSIS, MY DAUGHTER IS EXPERIENCING IT, THIS IS HOW LIVED EXPERIENCE WORKED, DIALOGUE WITH A PHYSICIAN THAT CAN HELP YOU BREAK THROUGH WHEN THE OTHER NINE DIDN'T WORK OUT. THIS IS HOW YOU CAN LEARN FROM OUR EXPERIENCE. IT MAY NOT BE THE ONLY PATH FOR YOU BUT THIS IS ONE PATH. EXAMPLES IN CHICAGO, WOMEN WHO VERY BRAVELY GOT OUT AND STARTED A BLOG ABOUT THEIR EXPERIENCE. AND YOU'RE ASTONISHED AT THE LEVEL OF INTIMATE DETAIL THEY ARE TELLING YOU ABOUT THEIR EXPERIENCE. YOU CAN FOLLOW THEM ON TWITTER. THEY HAVE NO SHAME OR QUALMS ABOUT SHARING THE STORY BUT I DON'T KNOW IF THE GOVERNMENT HAS A MECHANISM PAYING FOR THIS COMMUNICATION. PROFESSOR SILK'S COMMENTARY, WE NEED MULTIPLE STREAMS TO GET THE MESSAGE OUT IS CRITICAL. WE DON'T TEND TO DO A FOCUS GROUP ON THE WORST AND MOST REFRACTORY CASES WITH 20 YEARS OF EXPERIENCE BUT REMINDS MU ME BACK IN THE DAY WE DIDN'T HAVE A TREATMENT FOR HIV BUT A HANDFUL OF PEOPLE IN THAT DIDN'T GET HIV EVEN THOUGH INFECTED, STUDY MIGHT BE TO STUDY LONG-TERM SURVIVORS THAT DON'T GET DISEASE, THEY ARE INFECTED CHRONICALLY. THIS MIGHT BE A GREAT OPPORTUNITY. I DON'T KNOW THE MECHANISM. YOU CAN'T WRITE A GRANT TO STUDY THIS COMMUNICATION, MY UNDERSTANDING BUT MAYBE WE CAN PARTNER WITH SOMEBODY IN THE GOVERNMENT, JUST A THOUGHT. >> CAN I ADD SOMETHING TO WHAT FRANK SAID? ONE THING THAT'S FILLING THE VOID IS FACEBOOK GROUPS. I'M A MEMBER OF MANY FACEBOOK GROUPS. AND IT IS A DOUBLE-EDGED SWORD BECAUSE THERE'S INFORMATION THEY ARE SHARING, TRYING TO DO THAT PEER TO PEER COUNSELING, PEER TO PEER IS NOT AN EXPLICIT TERM AT THIS MEETING, I'M THINKING ABOUT IT A LOT BECAUSE FACEBOOK GROUPS WILL GET TO BE LIKE THE FAN CLUB FOR A PARTICULAR SURGEON, NANCY'S NOOK, YOU SHOULD LOOK AT IT. IT'S A LITTLE SCARY AS A PATIENT WHO HAS BEEN THROUGH THE WARS AND KNOWS THE SURGEONS THAT GET TO BE THE FAN CLUBS AND DO HAVE SOME USEFUL INFORMATION BUT THEY ALSO HAVE A LOT OF EXTREMELY BIASED AND UNHELPFUL INFORMATION. IT'S FILLING THAT VOID OF NOT HAVING SOMETHING THAT'S MORE CURATED AND WE ACTUALLY -- I'M PAYING FOR A STUDENT TO DO HER THESIS, HOW DO WE EMPOWER PATIENTS. WE'RE TALKING AROUND THE SAME THING. I ECHO YOUR QUESTION, IS THERE A WAY TO SORT OF CODIFY A PEER-TO-PEER COUNSELING, I DO IT AT M.I.T., I ASK STUDENTS HOW'S YOUR PERIOD? I DO IT IN A WAY THAT'S NOT OFF-PUTTING. BUT I'VE HAD GIRLS TALK ABOUT I WAS REALLY TIRED. IS IT RELATED TO YOUR PERIOD? ONE THING WE HAVEN'T TALKED ABOUT EITHER IS PMS AND COLLATERAL, MIGRAINES, YADA YADA. I DO TRY TO DO THIS WITH MY STUDENTS, I'LL CALL OTHER PROFESSORS, SO-AND-SO NEEDS TO TAKE THE EXAM A DAY LATE, SHE NEEDS TO SLEEP, SHE'S GOT HER PERIOD. I'VE DONE THIS FOR A LOT OF STUDENTS. I'M ONE PERSON. MY QUESTION IS A GOOD ONE. I THINK WHAT YOU'RE SAYING, IF I COULD ENCAPSULATE IT, HOW DO WE DO SOME SORT OF CODIFICATION OF PEER-TO-PEER PATIENT HEALTH, AS KRISTEN SAID YOU CAN'T -- PROVIDERS DON'T HAVE THE TIME ANYMORE AND THERE'S SO MUCH WISDOM WITH THE PATIENTS AND I TRY TO DO IT BUT I'M JUST LIKE ONE LITTLE PERSON AND I'M NOT CODIFIED. >> SO, CAN I JUST SAY, WE'VE THOUGHT ABOUT BASICALLY DOING A STORY CORE FOR SEVERAL CONDITIONS. AND THIS IS SUCH A GOOD ONE BECAUSE YOU'VE GOT THE ICK FACTOR, REMEMBER THE GIRL THAT RAN THE MARATHON BLEEDING? VERY ENERGIZING TO A CERTAIN SET OF POPULATION, VERY ICK FACTOR TO THE OTHER, RIGHT? IT GOT TREMENDOUS ATTENTION. SO PEER AND MARKETING OPPORTUNITIES ARE FANTASTIC HERE. WE DEAL WITH THE BLADDER SPACE. THAT'S GOT STIGMA AND SHAME TRIPLE I THINK SOMETIMES BUT NOT IN OTHER MARKETS. BUT I THINK THE ABILITY TO HAVE PEOPLE TELL THEIR STORIES, I LOVED HOW YOU HAD YOUR FOCUS GROUP DATA, IS REALLY IMPORTANT AND I DON'T KNOW WHO IT'S MOST IMPORTANT TO. I DON'T KNOW IF IT'S MOST IMPORTANT TO THE PAYERS. I'M PROVERBIALLY THINKING OF COURSE INSURANCE COMPANIES SHOULD BE ON IT. THEY DON'T CARE. THE GOVERNMENT IN THE ROOM, AWESOME OPPORTUNITIES TO DO QUALITATIVE THINGS LIKE THAT, PATIENT ENGAGED, IT'S HAPPENING IN OTHER SPACES IN PELVIC HEALTH. AND I JUST THINK IT'S KIND OF JUST DO IT, TO ME, BUT I'M NOT THE CLINICAL RESEARCHER, MORE THE GRASS ROOTS PERSON. WHEN WE DID THE LISTENING TOUR WE ENDED IN MICHIGAN, 20 WOMEN IN A ROOM, DIVIDED IN 10, 25 TO 85 THE OLDEST. THEY STARTED SELF DESIGNING WHAT THEYENT WANTED OUT OF TECHNOLOGY. THE WOMAN WHO WAS 83 SAYS I JUST WANT A COMMUNITY OF PEOPLE I CAN TALK TO, WHO HAVE GONE THROUGH SIMILAR EXPERIENCES, THAT IF I NEED TO KNOW THAT OR -- AND YES, IT'S GOING TO BE A FREE FORUM SOMETHING, NICE IF THAT WAS SEMI CURATED SO SOMEBODY COULD JUMP IN, HEY BY THE WAY, A GOOD TIME TO TEXT NURSE NANCY AND ASK THAT QUESTION OR COME BACK IN AND LET'S TALK ABOUT THAT. IT'S AN ABILITY BUT IT'S AN EVOLVING JOURNEY WE'RE ON. >> I'M FROM BOSTON UNIVERSITY. I SPENT SEVEN YEARS STUDYING LARGE EXISTING DATA SETS FOR WOMEN'S HEALTH OUTCOMES, ENVIRONMENTAL EXPOSURES. AND THERE'S REALLY NO GREAT EXISTING DATASETS FOR THE MENSTRUAL CYCLE. I THINK IT'S REALLY EXCITING THAT THIS CONFERENCE IS GOING ON. I'M WORKING WITH TWO APP COMPANIES RIGHT NOW LOOKING AT HOW TO TAKE HUGE AMOUNTS OF DATA AND DEVELOP OUTPIT PATIENTS CAN TAKE TO DOCTORS OR PREDICTIVE MODELS, ONE GROUP HAS A VIRTUAL DOCTOR TO TALK TO THE PATIENT. ONE OF MY QUESTIONS IS, WHAT IS GOING TO BE REQUIRED FOR KIND OF LIKE NIH LEVEL GRANT FUNDING TO BE INTERESTED IN FUNDING THIS KIND OF TOPIC? >> I THINK THAT QUESTION GOES TO DR. HALVORSON. [LAUGHTER] >> I'LL TAKE THE OPPORTUNITY TO COMMENT ON THIS ISSUE OF PATIENT FORUMS, ET CETERA. SEEMS TO ME THIS SPEAKS WELL BEYOND TOPICS WE'RE DISCUSSING HERE TO EDUCATING -- I SHOULDN'T SAY PATIENTS. PEOPLE. CITIZENS, INTO CRITICAL THINKING TO A DEGREE, RIGHT? HOW DO YOU INTERPRET A MESSAGE BASED ON WHO IS GIVING YOU THAT MESSAGE? SO THAT THEY CAN SELF-CURATE TO SOME DEGREE THE INFORMATION THEY ARE RECEIVING. IN TERMS OF NIH, OBVIOUSLY WE ARE INTERESTED IN THIS TOPIC. WE'RE ALL SITTING HERE IN THIS ROOM. THERE ARE SOME ISSUES FROM AN NIH PERSPECTIVE IN TERMS OF WHICH SPACE DO WE FUND IN. AND SOME OF WHAT WE'RE TALKING ABOUT TODAY IN FACT IS NOT WITHIN THE NIH SPACE, RIGHT? IT IS IN A BROADER EDUCATIONAL SPACE, A BROADER FUNDING THROUGH OTHER TYPES OF GOVERNMENT AGENCIES. SO BY NO MEANS POOH-POOHING THE RULE NIH/NICHD CAN PLAY. AS PART OF OUR STRATEGIC PLANNING WE WILL NOT ONLY BE TALKING ABOUT WHAT TOPICS ARE OF CRITICAL INTEREST FOR THE FUTURE OF NICHD BUT ALSO THE TYPES OF RESEARCH, THE TYPES OF EDUCATION, IN THIS CASE, THAT WE REALLY SHOULD BE PLAYING A ROLE IN CAN EFFECTIVELY PLAY A ROLE. SO I'LL END THERE. >> WELL, I'D LIKE TO THANK THE SPEAKERS AGAIN FOR A WONDERFUL SESSION. AND I'LL HAND IT BACK OVER TO DR. TINGEN. WE'RE GOING TO GET STARTED ON THE FINAL PORTION OF OUR MEETING, WHICH WILL BE THE READOUT FROM THE BREAKOUT GROUPS. AND FOR LACK OF BETTER IDEA, I'M JUST GOING TO HAVE THE PRESENTATIONS GO IN THE ORDER OF THE PRESENTATIONS FOR THE REST OF THE MEETING. SO THE FIRST GROUP THAT SHOULD PRESENT WOULD BE MENSTRUATION AROUND THE WORLD, PUBLIC HEALTH PROGRAMS AND OUTREACH. I DON'T KNOW WHICH OF YOUR GROUP IS DOING THE PRESENTATION. GREAT. PERFECT. THANK YOU. I SHOULD JUST SAY THAT THE PLAN IS TEN MINUTES FOR PRESENTATION, TEN MINUTES FOR DISCUSSION, AND OVERALL DISCUSSION AT THE END. >> CAN WE EDIT SLIDES DURING THE DISCUSSION? THERE SHOULD BE SOMEONE WHO CAN EDIT THE SLIDE DECK IN REAL TIME. >> YEAH, DOES SOMEONE HAVE THE SLIDES? CAN YOU EDIT IN REAL TIME? THANK YOU. IF THAT COMES UP. IT MAY NOT COME UP. OKAY. SO, WE HAD THESE TWO QUESTIONS, WE WERE GIVEN WONDERFUL MARCHING ORDERS TO BE AS OUT OF THE BOX AS POSSIBLE. NOT NECESSARY CONSTRAINED BY WHAT NIH MIGHT OR MIGHT NOT BE INTERESTED IN SUPPORTING. SMALL FONT BUT A LOT OF IDEAS. ONE THING WE WANTED TO MODIFY, I DON'T HAVE IT UP HERE, BUT THE MARCHING ORDER, THE TITLE WAS MENSTRUATION AROUND THE WORLD, PROGRAMS AND OUTREACH IN THERE. WE JUST FELT RESEARCH SHOULD BE IN THAT AS WELL, THAT GOOD PROGRAMS AND OUTREACH ARE BASED ON GOOD RESEARCH AND EVIDENCE, THAT SEEMED LIKE A SMALL THING WE WANTED TO ADD TO OUR PORTFOLIO. IN TERMS OF SIGNIFICANT ADVANCES OVER THE LAST FIVE YEARS, WE FELT -- SOME OF THIS I COVERED YESTERDAY, AS DID OTHERS, BUT JUST THAT THERE IS GROWING RESEARCH, REALLY RICH QUALITATIVE DATASET. I WOULD EDIT THIS, IT'S NOT ACTUALLY FOR WOMEN'S, IT'S GIRLS AND SCHOOLS, I WOULD EDIT THAT. BUT THERE IS SOME ADDITIONAL RESEARCH GOING ON AROUND DISPLACED GIRLS AND WOMEN. HUGE AMOUNT OF MOMENTUM WITH ADVOCACY ON THIS ISSUE. IT CAUGHT THE ATTENTION OF THE DIRECTOR OF THIS INSTITUTE, A GROWING ISSUE, ENTREPRENEURSHIP, APPS, MORE IN THE LOW THAN HIGH INCOME WORLD BUT NOT THAT SAY THEY ARE NOT SPREADING TO SOME DEGREE, BETTER APPRECIATION OF WHAT SOME NEEDS AND CHALLENGES ARE, THERE IS A 12-COUNTRY GLOBAL EARLY ADOLESCENT STUDY THAT HOPKINS HAS BEEN LEADING WITH MANY OTHER PARTNERS, ONE OF THE REASONS WE HAVE THAT UP THERE IS ALSO JUST 10-14 YEAR OLDS HAVE BEEN GROWING IN ATTENTION IN TERMS OF GLOBAL DEVELOPMENT WORLD, OBVIOUSLY AN ISSUE THAT OVERLAPS EXACTLY WITH ONSET OF PUBERTY AND MENARCHE. AND THAT ONE OF THE -- THAT POPULATION HASN'T HAD A LOT OF INTEREST BECAUSE IN PUBLIC HEALTH YOU FOCUS ON WHO IS DYING AND SICK, 14-YEAR-OLDS ARE NOT IN THAT CATEGORY, MAYBE THERE'S MORE REASON TO HAVE INTEREST IN THIS AGE GROUP. IN SUB-SAHARAN COUNTRIES, IN INDIA, THE ISSUE OF MENSTRUATION, STARTING TO OVERCOME THE TABOOS, TALKING ABOUT THIS, THERE'S BEEN A LOT ON SOCIAL MEDIA, MENSTRUAL HYGIENE DAY, ADVOCACY. MORE AND MORE ORGANIZATIONS, I STARTED DOING THIS IN 2004, NIH WOULD NEVER HAVE HAD A MEETING ON THIS, A TWO-DAY MEETING ON IT THEN SO CLEARLY IT IS GAINING REST RESONANCE AS A PUBLIC HEALTH ISSUE WORTHY OF ATTENTION AND INVESTMENT. ALSO THE ABILITY, JUST THE ADVANCES IN TECHNOLOGY TO STUDY, TO USE BIOMARKERS AND WE MAY NOT BE USING THEM TO THE DEGREE THAT WE COULD BE IN THIS POPULATION BUT SOMETHING TO THINK ABOUT GOING FORWARD. SO, THAT WAS A FIRST ONE. WE-- I'M GOING TO FLIP BECAUSE WE ACTUALLY DID IT IN A DIFFERENT ORDER. I WON'T GO THROUGH ALL BUT WE SKIPPED TO THE THIRD THING, WHAT ARE THE MOST SIGNIFICANT TECHNICAL CHALLENGES BECAUSE I THOUGHT THAT MADE MORE SENSE BEFORE WE TALK ABOUT COMPELLING OPPORTUNITIES. CONCEPTUALLY THEY ARE STILL IN THE FIELD, IT IS -- PEOPLE AREN'T THINKING AS HOLISTICALLY AS THEY COULD BE, THERE'S A FOCUS ON PRODUCTS OR SORT OF ONE PIECE AND NOT REALLY THINKING SORT OF CONCEPTUALLY WHAT ARE WE TALKING ABOUT AND HOW HOLISTIC APPROACHES MAY BE NEEDED FOR SOME ASPECTS OF MENSTRUATION. UNDERSTANDING THE RANGE OF WHAT NORMAL MENSES VARIATION IS, THAT CAME UP EARLIER TODAY IN PRESENTATIONS GIVEN. CULTURAL AWARENESS, UNDERSTANDING AROUND CULTURAL BELIEFS, HOW THAT FITS INTO THINGS. AND SORT OF FRAMING IT AS AN ISSUE OF GENDER DISCRIMINATION, AND HOW THERE ARE INEQUALITIES IN THE WORLD, IN THE WORKPLACE, IN SCHOOLS, IN HEALTH CARE EXPERIENCES AND THIS IS SORT OF A GENDERED ISSUE. PRACTICALLY, AND THIS IS A FUNDING ISSUE THAT I THINK IS NOT UNIQUE TO ANY FUNDING DONOR AGENCY OUT THERE, IS JUST IT DOESN'T NECESSARILY HAVE A HOME, AND SORT OF DOESN'T NECESSARILY FIT NATURALLY INTO ONE SECTOR OR NOT, WHETHER IT'S CHILDREN'S HEALTH OR SEXUAL REPRODUCTIVE HEALTH OR WATER SANITATION OR EDUCATION. IT CAN FLOAT A LITTLE BIT. THIS HAS COME UP REPEATEDLY IN TAKES OWNERSHIP OF THIS ISSUE. UNCLEAR IF THE STUDY SECTIONS CURRENTLY OUT THERE, IF THEY STARTED TO GET A BUNCH OF PROPOSALS THAT TALK ABOUT MENSTRUATION AND SOME ISSUES WE'RE COVERING IN TWO DAYS, WOULD THEY BE ADEQUATELY SORT OF STAFFED OR WHATEVER THE WORD IS FOR WHAT YOU CALL FILLING STUDY SECTIONS TO REVIEW THEM. AND SO THEY MAY BE GETTING REJECTED WHEN THEY NOT NECESSARILY IS THE RIGHT RESPONSE. THE ISSUES AROUND PROVIDERS, YOU KNOW, HEALTH CARE WORKERS OBVIOUSLY THERE'S LOW NUMBERS IN A LOT OF COUNTRIES FOR THOSE WHO GLOBALLY OPERATE, NURSES AND COMMUNITY HEALTH WORKERS OR CLINICAL HEALTH WORKERS, NOT NECESSARILY PHYSICIANS, AND ARE THEY GETTING THE TRAINING THEY NEED. DO THEY SAY THE POPULATION AND ISSUE OF MENSTRUATION WORTHY OF ATTENTION AND IS IT SOMETHING WE SHOULD BE PUSHING WHEN THEY ARE DEALING WITH MALARIA AND HIV AND ALL SORTS OF OTHER ISSUES THAT POTENTIALLY ARE MORE COMPELLING. BUT LACK OF SORT OF JUST BASIC DATA, WE HAVE RICH DATA NOW ON GIRLS' EXPERIENCES IN AND OUT OF SCHOOL AROUND GETTING THEIR FIRST PERIOD AND CHALLENGES THEY FACE AND LACK OF KNOWLEDGE. BUT WE REALLY KNOW VERY LITTLE ABOUT THE LIVED EXPERIENCES OF MENSTRUATION. JUST THE FACT THAT YESTERDAY THERE WERE MEN IN THE ROOM WHO WERE SURPRISED TO HEAR THAT WOMEN THINK ABOUT WHAT CLOTHING THEY WEAR WHEN THEY GET THEIR PERIOD EVERY MONTH, I THINK THAT IS LIKE THE TIP OF THE TIP OF THE TIP OF THE ICEBERG OF WOMEN AND GIRLS EXPERIENCES, AND WE KNOW SO LITTLE GLOBALLY AROUND HOW THEY ARE MANAGING IN CROWDED URBAN SLUMS, HOW THEY ARE MANAGING, YOU KNOW, WORKING IN THE FIELDS, HOW THEY ARE MANAGING STANDING IN LONG LINES TO GET WATER, IN THE HOUSE, ALL THE TOPICS THAT CAME UP THIS MORNING AROUND HEAVY BLEEDING, PATTERNS OF BLEEDING, WE KNOW NOTHING ABOUT THEIR EXPERIENCE. IF YOU DON'T HAVE THAT HOW DO YOU COME UP WITH MEASURES AND INTERVENTIONS AND SOLUTIONS TO WHAT THEY MAY BE FACING? THERE'S A LOT OF DIFFERENT ACTIVITY HAPPENING IN DIFFERENT PLACES, AND COULD BE BETTER BROUGHT TOGETHER. THERE COULD BE BETTER PARTNERSHIPS AND ALSO ONCE WE UNDERSTAND WHAT THE BARRIERS ARE IN THE RESPECTIVE AREAS, YOU KNOW, ACTUAL FUNDING FOR RIGOROUS TRIALS SO WE KNOW WHAT INTERVENTIONS WORK AND HOW WE SHOULD BEST BE MEASURING THEM. AND THAT COMES TO THE TECHNICAL GAP. THERE'S A NUMBER OF US WHO HAVE BEEN TRYING FOR YEARS TO GET FUNDING TO FIGURE OUT WHAT MEASURES CAN WE BE USING NOW TO MEASURE INTERVENTION, EFFECTIVENESS AND WHAT INTERVENTIONS -- WHAT MEASURES NEED TO BE VALIDATED. WE PROBABLY ONLY KNOW ENOUGH TO REALLY BE DOING THAT IN THE REALM OF GIRLS RIGHT NOW. WE DON'T KNOW ENOUGH I THINK ABOUT WOMEN'S EXPERIENCES TO EVEN COME UP WITH THE RIGHT MEASURES, BUT WE CERTAINLY COULD BE DOING THAT. SO HAVING THOSE -- THEN THOSE MEASURES WOULD BE AVAILABLE FOR GOVERNMENT, FOR NATIONAL LEVEL MONITORING, NGOs IMPLEMENTING PROGRAMS, RESEARCHERS, SO I THINK THEY WOULD REALLY -- THEY WOULD BE CROSS-CUTTING SO YOU WOULD HAVE THOSE THAT RELATE TO ANXIETY, DEPRESSION, MENTAL HEALTH ISSUES HAVING TO DO WITH MENSTRUATION, SEXUAL AND REPRODUCTIVE HEALTH-RELATED ISSUES HAVING TO DO WITH MENSTRUATION, CONFIDENCE, CLASSROOM ENGAGE, ENGAGEMENT. HOW DO YOU GET PEOPLE TO BE COLLABORATIVE WITH INTELLECTUAL ISSUES BUT TRYING TO BUILD A PORTFOLIO OF EVIDENCE TO MOVE FORWARD THE AGENDA AND SO ON. TO GO BACKWARDS TO THE FINAL TOPIC, AGAIN, CROWDED BUT I'LL TRY TO SUMMARIZE, WHAT ARE THE MOST COMPELLING OPPORTUNITIES. SOME OF THIS IS SORT OF REHASHING A LITTLE BIT SO NEEDING MEASURES, AGAIN, THAT WOULD BE COMPELLING. THERE'S A LOT OF INTEREST, THIS IS AN EXAMPLE FROM THE EDUCATION, GIRLS EDUCATION SPACE, AROUND EVERYBODY WANTS ATTENDANCE DATA, MENSTRUATION IS A PROBLEM BECAUSE OF ATTENDANCE AND DROPOUT FOR REASONS I WON'T BORE YOU WITH, THAT'S REALLY HARD TO CAPTURE AND MAY NOT GET US WHERE WE NEED TO GO, ANY MORE THAN TRYING TO SAY THAT POOR MENSTRUAL HYGIENE WILL LEAD TO LOTS OF INFECTIONS YET THOSE ARE THE THINGS THAT COMPEL PEOPLE TO INVEST. HOW DO WE COME ONE BROADER RANGE OF MEASURES THAT ARE MORE COMPELLING BUT MORE REALISTIC AND MEANINGFUL TO THE REALITY OF MENSTRUATION AND HOW IT IMPACTS GIRLS' AND WOMEN'S LIFE. AS WE ENTER MASSIVE URBANIZATION AND CLIMATE CHANGE WHAT ARE THE IMPLICATIONS FOR SANITATION SYSTEMS IN COUNTRIES WITH ENVIRONMENTAL HEALTH IMPLICATIONS AS PRODUCTS PROLIFERATE AROUND THE GLOBE AND GIRLS AND WOMEN ARE TRYING TO MANAGE, YOU KNOW, THAT. THAT'S A WHOLE ENVIRONMENTAL HEALTH ASPECT. LOOKING AT WORKPLACE ENVIRONMENTS, UNDERSTANDING WHAT GIRLS AND WOMEN NEED WHO ARE MANAGING IN FACTORIES, AND MARKETPLACES AND SHOPS. UNDERSTANDING WHAT THE GIRLS AND WOMEN'S EXPERIENCES ARE BEYOND THOSE IN SCHOOL AND THEN ALSO BOYS AND MEN AND SORT OF WHAT DO BOYS AND MEN UNDERSTAND ABOUT MENSTRUATION, IF THEY ARE WOMEN'S SUPERVISORS, IF THEY ARE HEADS OF HOUSEHOLDS WHO BUILD THE TOILETS FOR THAT FAMILY, OR PURCHASE THE SUPPLIES, OR PROVIDE THE MONEY FOR SUPPLIES, SORT OF HOW -- THIS MAY NOT BE THE MOST COMPELLING BUT AT SOME POINT WE NEED TO UNDERSTAND BOYS AND MEN'S KNOWLEDGE AND AWARENESS, THEY ARE PART OF CHANGING TABOOS AROUND THIS ISSUE. AND THEN MAKING SURE THAT, YOU KNOW, HOW DO WE ENGAGE GIRLS AND WOMEN IN A WAY THAT THEY REALLY BECOME ACTIVE CONSUMERS OR ACTIVELY ENGAGE IN THEIR OWN HEALTH AND SORT OF HOW THEY MANAGE THEIR PERIOD, AND THEN THE LAST PRACTICAL ONE BEING HEALTH CARE WORKERS, YOU KNOW, AS A TRAINED NURSE, BUT I MENTIONED IN OUR GROUP I SPENT A LOT OF TIME IN AFRICA, AND ADOLESCENT GIRLS AND NURSES TEND NOT TO HAVE GOOD RELATIONSHIPS SO HOW DO WE DO SOMETHING SO HEALTH CARE WORKERS THE GIRLS ARE INTERFACING WITH ARE MORE SUPPORTIVE, DON'T ASSUME QUESTIONS AROUND MENSTRUATION HAVE TO DO WITH SEX AND GET ANGRY AT THE GIRLS AND START TO SHIFT THAT THROUGH NURSING CURRICULA OR CAPACITY BUILDING. HIGH RISK, WE WERE STRUGGLING UNTIL WE WERE TOLD TO ENVISION WHAT IF YOU HAD $10 MILLION, FUN TO DO. I'M HAPPY TO TAKE $10 MILLION. I'LL JUST PUT THAT OUT THERE. POLITICAL, WE TALKED ABOUT SOME OF THE CHALLENGES AROUND DOING THAT, BUT I'M TRYING TO THINK HOW DO I SUMMARIZE THIS? WE HAD ONE IDEA AROUND REALLY LOOKING AT SORT OF THE BIOMARKERS AROUND THE EXPERIENCES OF MENSTRUATION, AND SORT OF FOLLOWING WOMEN OVER A PERIOD OF TIME AND UNDERSTANDING SORT OF STRESS LEVELS, EVERYDAY INTERACTION LEVELS, WHAT THE REGULAR CYCLES OR THE RANGE OF CYCLES, WHAT IS NORMAL, WHAT ARE WE EVEN TALKING ABOUT. SO WE HAVE A MUCH MORE RICH DATASET OF UNDERSTANDING THE MENSTRUAL CYCLE AND ITS INTERFACE WITH WOMEN'S ENVIRONMENTS AND DAILY NEEDS AND LIVES. WE TALKED ABOUT IF WE HAD A LOT OF FUNDING HOW WE WOULD -- WELL, ALSO RELATED IS PSYCHOSOCIAL STRESSORS IN GIRLS AND WOMEN'S DAILY LIVES AND HOW THAT MAY IMPACT THEIR MENSTRUAL CYCLE. LOOKING AT EXPANDING SORT OF THE AVAILABILITY OF PRODUCTS AROUND THE WORLD THROUGH MICROFINANCES INVESTMENTS, CREATING AN INNOVATION FUND SO THAT PILOT PROJECTS COULD BE SUPPORTED TO TRY OUT DIFFERENT THINGS TO SEE WHAT WOULD WORK ONCE WE UNDERSTAND BETTER WHERE TO INVEST SORT OF FUNDING. AND THEN ONE I'VE BEEN THINKING ABOUT TRYING TO DO BUT HAVEN'T MANAGED TO FIGURE OUT YET, HOW DO WE SEE IF ASSOCIATIONS WE KNOW EXIST IN HIGH INCOME COUNTRIES AROUND EARLY MENARCHE, SUCH AS EARLY INITIATION OF SEX AND DEPRESSION AND SCHOOL DROPOUT AND SUBSTANCE USE, ARE THOSE ASSOCIATIONS THE SAME ACROSS LOW AND LOW AND MIDDLE INCOME COUNTRIES? ARE THOSE PATTERNS THE SAME OR NOT? IF THEY ARE THE SAME OR EVEN IF THEY ARE DIFFERENT ARE POINTS OF INTERVENTION TO IMPROVE POPULATION HEALTH. SHORT-TERMPAYOFFS USING MHM, BUILDING THROUGH QUALITATIVE RESEARCH A RICHER UNDERSTANDING OF WHAT THE EXPERIENCES ARE OUTSIDE OF JUST SORT OF THE SCHOOL GIRL POPULATION WHICH WE KNOW PRETTY WELL AT THIS POINT. AND THEN LONG-TERM IMPACT COULD BE MEASURES THAT COULD BE USED AS WE ALREADY SAID, FOR A RANGE OF NEEDS. OKAY. >> SO WE HAVE A FEW MINUTES FOR COMMENTS. QUESTIONS. DISAGREEMENTS. >> YES, GUNTER. >> SO, FOR ME, LOTS OF POINTS. MANY OF THEM ARE VERY IMPORTANT. BUT FOR ME IT SEEMS THIS EMPOWERING NOT ONLY YOUNG FEMALES BUT FEMALES IN GENERAL. >> YEAH. >> THROUGH KNOWLEDGE, AND ALSO THEN THE OTHER LINE OF INCLUDING MEN, BOYS. >> YEAH. >> I THINK THE ONLY THING THAT I WOULD LIKE TO HAVE ADDED THERE IS SOMETHING ABOUT HOW MENSTRUATION IS FRAMED. >> YEAH. >> SO IN THE BROADER ALMOST SPIRITUAL OR ARTISTIC WAY, RIGHT? >> YEAH. >> BECAUSE IT ALL SEEMS TO FIGHT AGAINST THE PRE-CONCEPTIONS, NEGATIVE CONNOTATIONS, THAT'S ALL SORT OF CULTURALLY AT A HIGHER LEVEL. >> RIGHT. >> I THINK IF YOU DON'T ADDRESS THOSE, SOMEHOW. >> RIGHT. YOU'RE RIGHT. >> (INAUDIBLE). >> RIGHT, EXACTLY. >> GETTING MORE POSITIVE. >> YES. >> CONNOTATIONS OR WHATEVER. FRAME IT IN A WAY. >> AND WE DID. I THINK I SKIPPED -- THAT SPEAKS TO THE IDEA AROUND COMMUNICATIONS AND SORT OF HAVING NEW COMMUNICATIONS SORT OF MESSAGING THAT REALLY FRAMES THE NORMS. >> DON'T TRUST KNOWLEDGE, JUST DON'T KNOW. >> YES, EXACTLY. EXACTLY. AND CULTURE, ONE OF THE THINGS WE TALKED ABOUT, CULTURE DOES I THINK MAKE PEOPLE NERVOUS THAT SOMEHOW CULTURAL BELIEFS ARE VERY STRONG AND THEY DON'T WANT TO TRY TO CHANGE IT. CULTURE IS CHANGING ALL THE TIME, AND HAS SUCH IMPLICATIONS FOR HOW PEOPLE DISPOSE OF USED MATERIALS IN PARTICULAR. BUT WE CAN BE SHIFTING THAT OR TRYING TO SHIFT THAT, YEAH. IT'S A GREAT POINT. ANY OTHERS? OKAY. >> OKAY. SO THEN LET'S MOVE ON TO THE BIOLOGICAL ASPECTS OF THE MENSTRUAL. SO, OUR GROUP ADDRESSED THE BIOLOGY OF THE MENSTRUALOME, AND I THINK WE HOPEFULLY CAPTURE HERE WHAT WE SAW AS SIGNIFICANT. THAT DOESN'T THERE ARE TOPICS THAT ARE DONE AND DUSTED. THEY ARE MAIN CONTRIBUTIONS TO THE FIELD WHICH PROBABLY STILL HAVE IMPORTANT FURTHER QUESTIONS TO BE ADDRESSED. SO, DEEP CELL PHENOTYPING INCLUDING PARTIAL IDENTIFICATION OF CYCLE DEPEND CELLULAR COMPOSITION, SO THAT INCLUDES THE STEM CELLS, IMMUNE CELLS, AND ALTHOUGH WE'RE TALKING ABOUT MENSTRUATION WE ALSO ARE COGNIZANT OF THE IMPORTANT RELATIONSHIP BETWEEN THE ENDOMETRIUM AND MYOMETRIM, A VERY IMPORTANT COMPONENT IN THIS YOU TRYING BIOLOGY SPHERE THAT WE THINK OF BOTH. WE THEN ACKNOWLEDGE THE FACT THAT THERE ARE SOME REALLY IMPORTANT REFINEMENTS IN THE MODELS OF MENSTRUATION, WHETHER IT'S A SIMULATED MODEL OR AS WAS SHARED THIS RECENTLY REPORTED SPONTANEOUSLY DESIDUALIZZING AND MENSTRUATING SPINY MOUSE IN THE RODENT SPECIES. WE TALKED ABOUT THE IMPORTANCE OF HUMAN MICROBIOME PROJECT, PARTICULARLY THE FACT THE UTERUS IS NOT STERILE. TAKEHOME IS UTERUS IS NOT STERILE, AND WE NEED TO RECOGNIZE NOW THE IMPORTANCE OF THE MICROBIOME AND IMPORTANTLY THAT COMES OUT LATER HOW IT TALKS TO MAYBE OTHER CELLULAR COMPONENTS. FURTHER ADVANCES HAVE BEEN THE UNDERSTANDING OF THE BIOLOGY OF STEM CELLS, BOTH RESIDENT AND THOSE TRAFFICKING INTO THE UTERUS. IN TERMS OF ADVANCES IN OUR TECHNOLOGIES, THEN WITHOUT DOUBT TISSUE ENGINEERING, ABILITY TO DEVELOP ORGANOID CULTURES OF EPITHELIAL CELLS NOW TAKEN UP BY MANY GROUPS ACROSS VARIOUS CONTINENTS, THIS IS TECHNOLOGICALLY BEEN A HUGE ADVANCE. AND THEN UNDERPINNING A LOT OF WHAT WE'VE HEARD REPEATEDLY THROUGHOUT THE DAY AND A HALF HAS BEEN THIS CRUCIAL NEED TO BETTER PHENOTYPE PATIENTS, HAVE GOOD CLASSIFICATION SYSTEMS, AND WE'VE HEARD ABOUT THE -- SO THE WERF EFFECT IS SOMETHING THAT'S A GOOD STANDARD FROM THE ENDOMETRIOSIS, AND PALM-COEIN AND PATIENT-REPORTED OUTCOMES. THOSE WERE OUR ADVANCES. WE CAN'T BE TOTALLY INCLUSIVE IN THE DISCUSSION, IF WE MISSED ANYTHING PLEASE LET US KNOW. IN TERMS OF THE COMPELLING OPPORTUNITIES IN ORDER TO FURTHER THE FIELD WE'LL AGAIN HEAR THIS REPEATED THROUGHOUT THE SORT OF OUTCOME FEEDBACK OF DISCUSSIONS IS THIS IMPORTANCE TO ALIGN WITH OTHER COMMUNITIES. MANY OF US FEEL STRONGLY THAT THE GYNECOLOGICAL COMMUNITY NEEDS TO BE MORE CLOSELY ALIGNED WITH THE MFN COMMUNITY. YOU KNOW, WE HAVE PERHAPS MANY OF THE GREAT OBSTETRIC SYNDROMES HAVING, YOU KNOW, PRECURSOR RISKS PERHAPS IN THE NON-PREGNANT SITUATION, SO THIS IS A GREAT OPPORTUNITY AND I THINK, YOU KNOW, THE DISCUSSIONS THAT HAVE GONE ON IN THE ROOM OVER THE LAST I GUESS WHERE ARE WE NOW, 36 HOURS, SOMETHING LIKE THAT, WILL HELP THAT. THE OTHER ASPECT, WE DIDN'T WANT TO BE IGNORED, ALTHOUGH IT HASN'T BEEN THE FOCUS OF DISCUSSIONS, IS THE FACT THAT YOU CANNOT IGNORE THE COMPLAINT OF PAIN WHEN YOU THINK ABOUT MENSTRUATION AND THE MENSTRUAL CYCLE. AND SO WE WANTED TO FLAG THAT AND WE ACCEPT IT HASN'T BEEN A MAJOR POINT OF DISCUSSION BUT IT WOULD BE VERY WRONG TO HAVE THAT SILOED OFF SEPARATELY. >> A QUICK QUESTION, WHAT'S THE MFM? >>MATERNAL FETAL MEDICINE. THAT MAY BE A VERY EUROPEAN TERM. >> NO, NO. >> OKAY, SORRY. SO IN TERMS OF APPROACHES, WE FEEL ALL THAT MIGHT BE DEEMED HIGH RISK, WITH THE USE OF MACHINE LEARNING I CAN'T REMEMBER NLP, SOMETHING U.S.-DEPENDENT, IS IT? NO? OKAY. >> (INAUDIBLE). >> OKAY. >> DID EVERYONE HEAR THAT IN THE BACK? >> NATURAL LANGUAGE PROCESSING, IT'S A WAY TO TAKE A TEST. >> USE YOUR MICROPHONE. >> NATURAL LANGUAGE PROCESSING, WAY TO USE ARTIFICIAL INTELLIGENCE TO MINE TEXT PASSAGES TO LOOK CONTEXTUALLY AT WORDS TO GET A MEANING. IF YOU WERE GOING TO DO A BREAST CANCER DIAGNOSIS THERE MAY BE MANY WAYS SOMEONE WOULD WRITE THAT IN AN EMR AND YOU COULD GET A VERY SPECIFIC OUTCOME, SO NLP IS A COMMONLY USED COMPUTER SCIENCE TERM. >> THANK YOU, LINDA. COMORBIDITIES OUT OF EMRS, ELECTRONIC MEDICAL RECORDS. SOME PEOPLE CALL IT EHR, ELECTRONIC HEALTH RECORDS. OKAY. AND THEN IN THAT FURTHER HIGH RISK APPROACHES, COLLABORATION WITH THE mHEALTH, MENSTRUAL HEALTH INDUSTRY, AND WE THOUGHT IT WAS REALLY INTERESTING, WE HEARD SOME GREAT TALKS ABOUT MENSTRUAL BLOOD ANALYSIS ITSELF. BUT HOW ACCEPTABLE IS THIS GOING TO BE TO THE BIGGER COMMUNITY? I MEAN, WE DO IT IN THE RESEARCH SPACE BUT IF WE WERE GOING TO ROLL IT OUT IN TERMS OF HELPING US PERHAPS USE IT AS A BIOMARKER RESOURCE, ET CETERA, YOU KNOW, ARE WOMEN GOING TO WANT TO HAVE MENSTRUAL BLOOD LOSS COLLECTED, AND ANALYZED, IN THE WAY WE SEE OPPORTUNITIES IN THE FUTURE, SO THERE'S A WORK AROUND THERE ON ACCEPTANCE BY WOMEN. IN TERMS OF SHORTER-TERM PAYOFFS, ACCRUING DATA ON SINGLE CELL DATA TO INFORM STUDIES IS, YOU KNOW, WE HIGHLIGHTED THAT IN ADVANCES, WE NOW HAVE IMMEDIATE OPPORTUNITY TO ACTUALLY UTILIZE THOSE DATA SETS, I MEAN THEY ARE HUGE DATA SETS, BUT WORKING WITH MACHINE LEARNING, BIOINFORMATICS, CERTAINLY THERE'S AN OPPORTUNITY THERE. LONGER-TERM IMPACTS WILL INCLUDE FUNDAMENTAL MESSAGE ON REGENERATIVE MEDICINE, HOMEOSTASIS, INFLAMMATORY DECEMBER AND WOUND HEALING AND AGING, THE UNDERSTANDING OF THE MENSTRUALOME HAS A WIDER REACH THAN THE GYNECOLOGICAL COMMUNITY WE'RE WORKING IN. IT'S ABOUT INFORMING OTHERS, WORKING IN OTHER AREAS. AND OF COURSE THE OPPORTUNITY NOW TO NOT SORT OF HAVE THE SHOPPING LIST THAT WOMEN WORK THROUGH PERHAPS WHEN THEY NEED TREATMENTS, BUT TO BE MUCH BETTER AT PERSONALIZING THERAPIES. SO, THE MOST SIGNIFICANT CONCEPTUAL PRACTICAL TECHNICAL CHALLENGES, ON THE CONCEPTUAL SIDE AGAIN THIS IS QUITE BUSY SO I'LL TRY AND GO THROUGH THEM SUCCINCTLY. FIRST OF ALL, WE NEED TO INTEGRATE THE MANY OMIC DATA THAT WE HAVE, PARTICULARLY IMPORTANT THERE WILL BE INTER AND INTRACELLULAR SIGNALING STATES IN THE CONTEXT OF PHENOTYPIC DATA TO HELP US UNDERSTAND CELL-TO-CELL COMMUNICATION NETWORKS THAT GOVERN NOT ONLY THE NORMAL AND TO UNDERSTAND PATHOLOGY WE HAVE TO UNDERSTAND THE NORMAL FIRST AND, AGAIN, NOT LIMITING IT TO ENDOMETRIAL BUT MYOMETRIAL, GOVERNING MENSTRUATION AND ABNORMAL BLEEDING. WE SAW A GREAT OPPORTUNITY WITH INCREASING KNOWLEDGE OF THE MICROBIOME AND IN THE CONTEXT OF UTERINE BIOLOGY, BETWEEN THE MICROBIOME AND DECIDUA, TO LOOK AT EPIGENETIC AND GENETIC STATES OF DISEASE, THE EXAMPLE HIGHLIGHTED HERE IS PROGESTERONE RECEPTOR SIGNALING WHICH UNDERPINS PERHAPS MORE OF THE PROBLEMS OF UTERINE FUNCTION THAN WE REALIZE. A BETTER UNDERSTANDING OF THE VASCULAR COMPONENT OF THE END ENDOMETRIUM, NOT EASY TO STUDY. AND WHEN WE COME TO TECHNICAL CHALLENGES LATER WE HAVE HIGHLIGHTED THAT. FROM A PRACTICAL PERSPECTIVE WE NEED TO GET MORE PATIENT CENTER AND CAPTURE OF DATA USING SANCTIONED mHEALTH APPS, BEGINNING WITH THE TEENAGER, AND THIS IDEALLY WOULD HELP US DO LONGITUDINAL STUDIES ACROSS THE LIFE COURSE, AND THIS WILL BE EVERY INCREASINGLY IMPORTANT. AND WE WOULD, HOWEVER, NEED SOME GUIDANCE ON THE MINIMUM DATA THAT IT WOULD BE GOOD TO HAVE COLLECTED IN ELECTRONIC MEDICAL RECORDS BECAUSE INSTEAD OF HAVING TO THEN GO BACK AND ASK PEOPLE RETROSPECTIVELY FOR DATA, WE WOULD HAVE HAD, YOU KNOW, LIVE CAPTURED PROSPECTIVE DATA COLLECTION WHICH WOULD INCREASE ITS VALIDITY AND UTILITY. WE TOTALLY GET THE NEED FOR MULTI-DISCIPLINARY TEAMS, WORKING WITH DIVERSE EXPERTISE, CONTRIBUTIONS FROM ENGINEERING COMMUNITY, BIOLOGISTS, CLINICIANS, INDUSTRY, COMPUTER SCIENTISTS, EVEN WITHIN THE CLINICAL COMMUNITIES, COLLEAGUES FROM OTHER FIELDS AND SCIENTISTS. AGAIN, IF YOU'RE STUDYING INFLAMMATION, WORKING WITH INFLAMMATION SCIENTISTS, VASCULAR SCIENTISTS, ET CETERA. AND FINALLY ON THE TECHNICAL SIDE, WE NEED TO BE ABLE TO HARMONIZE OUR ACCESS TO BIOBANKING. HERE WE MEANT, YOU KNOW, WE MAY HAVE GREAT COLLECTIONS OF DATA, RESOURCES, BUT HOW DO WE MAINTAIN THESE RESOURCES SO THAT THEY ARE AVAILABLE FOR SHARING IN THE FUTURE WITH OTHER GROUPS. WE HAVE GAPS IN THE USE OF PATIENT-DERIVES iPS CELLS TO MODEL DISEASE, A SPECIFIC BUT IMPORTANT DISCUSSION. AND TECHNICALLY WE ARE STILL CHALLENGED BY THE DEVELOPMENT OF COMPLEX IN VITRO MODELS SO THAT WE CAN BETTER STUDY, FOR EXAMPLE, VASCULARIZATION AND IMMUNE CELL TRACKING, SO IMPORTANT AS COMPONENTS OF THIS HIGHLY COMPLEX TISSUE THAT MAKES UP THE MENSTRUALOME. SO THAT WAS OUR CONSENSUS DISCUSSION. AND WE WOULD WELCOME, IF WE LEFT ANYTHING OUT , OR SOMEBODY FEELS WE HAVEN'T ADDRESSED A DISCUSSION POINT THAT WAS CAPTURED. NO? >> SO I JUST THINK WE CERTAINLY DID MENTION PAIN, BUT I WOULD SAY THAT MORE ON THE GAPS WE SHOULD END UP, IT WILL COME UP THROUGH OUR OTHER DOCUMENTATION TOO, THIS NEED. THE FIRST SLIDE ACTUALLY. >> THE FIRST? >> LET'S GO TO THAT ONE. >> THAT WAS THE ADVANCES. >> RIGHT. >> THE PAIN CAME UP HERE. >> BUT IN THE FIRST ONE YOU MENTIONED WERF EFFECT. I THINK REALLY THAT POINTS OUT CLEARLY THAT THERE IS A LACK OF PAIN CATEGORIZATION, ALTHOUGH THERE ARE OTHER CATEGORIZATIONS. >> (INAUDIBLE). >> WELL, TRUE, BUT I WOULD PERSONALLY LIKE TO SEE OUTSIDE THE CONTEXT OF ENDOMETRIOSIS OF PAIN. RIGHT. >> I AGREE WITH THAT A THOUSAND PERCENT. >> EVEN ON THE FLIP SIDE OF THAT, SO THE PEOPLE WHO HAVE LED ON THE WERF EFFECT, I'M NOT SINGLING OUT STACY BUT SHE'S BEEN A MAJOR CONTRIBUTOR TO THAT, I KNOW THAT THEY WILL HAVE ITERATIONS OF LOOKING AGAIN AT THE DATASETS THEY CAPTURE, AND I THINK THERE IS AN OPPORTUNITY FOR THE WERF EPHECT GROUP TO LOOK AT WHAT DATA THEY CAPTURE ON MENSTRUAL PHENOTYPE. >> LEVER >> LEVERAGE OFF THE WERF EFFECT. >> A HUGE ELEPHANT IN THE ROOM, DOESN'T MENTION ADENOMEIOSIS, AND SO MANY PATIENTS WITH SYMPTOMS HAVE ADENOMEIOSIS, AT LEAST IN MY CLINICAL COLLABORATORS PRACTICE, THIS ISN'T BECAUSE PEOPLE WERE NEGLIGENT. JUST THE METHODS TO EVALUATE AWARENESS WEREN'T OUT THERE. SO, YOU KNOW, ADENOMEIOSIS IS RIGHT IN THE ENDOMETRIUM. I THINK CONFUSION OR LACK OF DATA ON COMORBIDITIES OF ADENOMEIOSIS IN ENDO IS SOMETHING THAT WERF IS GOING TO HAVE TO ADDRESS. >> BUT THAT IS ACKNOWLEDGING AND AGAIN I DON'T WANT TO GET INTO AN ENDOMETRIOSIS DISCUSSION BUT WHEN YOU TALK ABOUT THE ENDOMETRIOSIS WE TALK ABOUT PAIN AND WE TALK ABOUT INFERTILITY. BUT WE DON'T SO OFTEN ADDRESS THE ASSOCIATED MENSTRUAL EXPERIENCE. >> YES, EXACTLY. >> SO THAT IS WHAT IS MISSING. >> YEAH, AND I THINK -- IN MY VIEW I LOVE THIS MEETING BECAUSE WE FLIPPED IT. WE WERE FOCUSED ON MENSTRUATION, ENDOMETRIOSIS AS A CONSEQUENCE OF THAT, BUT MENSTRUATION IS THE CENTRAL ACT. SO I THINK FLIPPING THE WAY WE THINK ABOUT IT -- >> THIS IS ANOTHER EXAMPLE ABOUT WHERE DO WE GO BACK? YES, ALIGNING WITH PAIN AND MFN COMMUNITIES, YOU KNOW, AGAIN, EVEN WITHIN GYNECOLOGY WE DON'T PERHAPS WORK AS WELL TOGETHER AS WE COULD DO. OKAY. ANY OTHER POINTS? BECAUSE THESE ARE ALL VERY VALUABLE. >> I WOULD SUGGEST FOR THE SCIENCE WRITERS, LET'S MAKE THE POINT -- PUT THE WORD ADENOMEIOSIS PLEASE IN THE SLIDES AS AN EXTENSION OF WHAT WE'VE BEEN TALKING ABOUT. IT CERTAINLY IS AN OUTCOME OF MENSTRUATION ALSO. >> CERTAINLY. MAYBE EVEN PERHAPS IN THAT, THE BOTTOM BULLET POINTS. I THINK WE ARE CERTAINLY NOW BECAUSE OF THE -- PARTICULARLY IMPROVED ADVANCES IN IMAGING HAS ALLOWED US TO CAPTURE MORE ABOUT THE PREVALENCE OF ADENOMEIOSIS. OKAY. YEP. >> SLIDE 1. SORRY. WE DIGRESS OVER HERE. PRACTICAL TOPICS, WHERE WE'RE PUTTING IT. LINDA IS REWORKING OUR SLIDES. ANY OTHER QUESTIONS? >> SO, I THINK ONE OF THE THINGS SPECIFICALLY FOCUSING ON THE MENSTRUALOME, THERE'S A LOT OF REPRODUCTIVE DISORDERS THAT HAVE AMENORRHEA AS A CONSEQUENCE, HOW CAN WE USE IS TAKE END MEET ROTE IS, PUT A WOMAN ON AN ANTAGONIST, SHE HAS CESSATION OF MENSTRUATION FOR 6 TO 12 MONTHS HOW CAN YOU UTILIZE THAT REPRODUCTIVE BIOLOGY IN A WAY THAT CAN BE UTILIZED SORT OF ACROSS ALL SORTS OF PHENOTYPES OF MENSTRUAL IRREGULARITIES, THAT'S ONE CHALLENGE SPECIFICALLY FOCUSING ON THE MENSTRUALOME THAT'S A PROBLEM AS YOU MAY BE ABLE TO FIND CERTAIN BIOLOGICAL PATHWAYS OR BIOMARKERS FOR CERTAIN DISEASES BUT CAN THOSE ACTUALLY BE LEVERAGED INTO WOMEN WHO MAY HAVE PHENOTYPES OF AMENORRHEA OR OLIGO MENORRHEA. >> IF IT WAS PCS WITH OLIGO MENORRHEA OR AMENORRHEA, BECAUSE OF THE THERAPEUTICS THE PATIENT WAS BEING ADMINISTERED, YOU COULD CAPTURE IT. I MEAN, WHEN YOU STOP YOUR INTERVENTION, THE QUESTION IS DO THE MENSTRUAL EXPERIENCES RETURN TO WHAT THEY WERE BEFORE. I MEANF YOU WANT -- >> I THINK IT'S MORE FROM -- THERE'S OBVIOUSLY, YOU KNOW, CLINICAL AND PHENOTYPIC THINGS THAT CAN CAPTURE THOSE BUT I GUESS I'M MORE GETTING AT THE BIOLOGY BEHIND IT, HOW DO YOU ACTUALLY UTILIZE THE MENSTRUALOME TO UNDERSAND THE BIOLOGY OF WHAT'S GOING ON IN WOMEN WHO MAY NOT ACTUALLY BE MENSTRUATING. THIS IS A GENERAL -- >> IATROGENIC OR AS A RESULT OF ENDOCRINOLOGY? >> EITHER. I DON'T PRESENT IT AS AN ANSWER. MORE OF I THINK SOMETHING TO INCLUDE IN THE BARRIERS AS THIS IS AN ISSUE THAT PROBABLY NEEDS TO BE -- >> OKAY. WE'LL HAVE TO JUST THINK WHERE WE FIT IN, IN THE CATEGORIES. BUT THE POINT IS WELL TAKEN IS SOMETHING THAT PERHAPS WE HAVEN'T REALLY DISCUSSED IN THIS CONTEXT. >> DO YOU WANT TO SUGGEST A CATEGORY TO PUT IT IN? >> IT SOUNDS LIKE BARRIERS. >> I CAN MAKE A COMMENT? >> YES. IS THAT FRANK? YEAH. >> USE THE MIKE, FRANK. SORRY. >> EXCELLENT POINT BUT LOOK AT THE BIOLOGICAL MODEL FOR EACH OF THESE CONDITIONS. IT'S QUITE POSSIBLE MENSTRUAL EFFLUENT IS NOT A RELEVANT BIOMARKERS FOR OLIGO OR AMENORRHEA. CAN WE CAPTURE THE DATA EARLIER AND BANK IT, THAT MIGHT BE A SIGNIFICANT OPPORTUNITY TO SAY IF WE CAN CATCH IT FIVE YEARS AHEAD OF THIS AMENORREAL EVENT, WHY RISK DISEASE, THAT'S A BROADER GOAL. MANY CASES AMENORRHEA IS HYPOTHALAMIC OR IATROGENIC, SIMPLER SOLUTIONS. THESE ARE HARDER PROBLEMS THAN AMENORRHEA. IT HAS BIGGER PROBLEMS WE'RE NOT TASKED TO STUDY AT THIS POINT. >> OKAY. >> THANK YOU. SO NOW WE'LL MOVE TO MENSTRUATION AS A DIAGNOSTIC TOOL, SO THAT DISCUSSION WAS A NICE SEGUE. SO TO REVIEW THE SIGNIFICANT ADVANCES OVER THE PAST FIVE YEARS CLEARLY THERE HAVE BEEN A LOT OF TECHNOLOGICAL ADVANCES SUCH AS DEEP SEQUENCING THAT WOULD ALLOW US TO LOOK AT PATIENT VARIANTS. SINGLE CELL SEQUENCING IS NOW COMING INTO ITS OWN. AND IT'S ALREADY BEEN APPLIED IN CANCER, BUT WHETHER IT WOULD BE RELEVANT FOR -- TO BE USED AS A DIAGNOSTIC BUT AT LEAST IT COULD BE USED FOR DEVELOPMENT OF A DIAGNOSTIC. THERE'S LOTS OF ACTIVITY IN THIS SPACE WHICH IS REALLY A VERY RECENT PHENOMENON THAT PEOPLE ARE INTERESTED IN THIS. AND THAT IS VERY EXCITING SO THAT THERE'S ENTHUSIASM. THERE'S MANY APPROACHES THAT COULD BE APPLIED TO MENSTRUATION, INCLUDING THE METABOLOMICS, PROTEOMICS, FOCUS ON SOME INFECTIOUS DISEASES SUCH AS HPV, EVEN MEASURING HEMOGLOBIN A1c LEVELS, AND OTHER MARKERS. THERE CAN BE IMPLEMENTATION OF MACHINE LEARNING AND ARTIFICIAL INTELLIGENCE, WHICH ARE ALREADY BEING APPLIED TO THE PHENOTYPING OF MENSTRUATION. AND THERE ARE LOTS OF APPS THAT SEEM TO BE AVAILABLE FOR ALL OF THESE ACTIVITIES, AND ACCESS TO MEDICAL RECORDS AND IMPLEMENTATION OF MEDICAL RECORDS. IN ADDITION WE DISCUSSED IMAGING AND NEW IMAGING ADVANCES THAT COULD BE COUPLED TO BETTER UNDERSTAND SOME OF THE UTERINE ACTIVITIES AND FUNCTIONAL CHANGES. AND SOCIETAL CHANGES THAT WE CAN TALK ABOUT MENSTRUATION, THAT IT'S NOT TABOO AND IT IS SOMETHING THAT PERHAPS YOU DISCUSS AT HOME WITH FAMILY MEMBERS, WITH YOUR HEALTH CARE PROVIDERS, AND WE CAN ENCOURAGE DEVELOPMENT IN A DIAGNOSTIC SPACE, BASED ON THAT. COMPELLING OPPORTUNITIES TO BE ADDRESSED IN ORDER TO FURTHER THIS FIELD, WELL, THERE ARE MANY PRACTICAL ISSUES. THERE ARE LARGE DATASETS THAT CAN BE HELPFUL, THAT COULD BE USED TO GUIDE SCREENING RECOMMENDATIONS. BIOBANKING WAS JUST MENTIONED, BIOBANKING FOR UNIQUE SPECIMENS AND HOW WOULD YOU SHARE THESE SPECIMENS IN THESE BIOBANKS. AND HARMONIZATION IN THE COLLECTION. NEED TO DO IT BUT IT ALSO HASWE- THESE PRACTICAL CHALLENGES TO IMPLEMENT. AND WE WANT TO SHIFT OWNERSHIP TO THE PATIENTS, GIVING THEM A BIGGER ROLE IN THIS PARTICIPATION OF THEIR OWN MEDICAL CARE. LEVERAGING EXISTING -- THIS IS BACK TO IMAGING, RADIOLOGIC INFRASTRUCTURE AND DATA TO INTEGRATE INTO EXISTING TECHNOLOGY SO SOMETIMES COMBINING SOME OF THESE THINGS. AND, AGAIN, USE OF APPS THAT ALLOWS VOLUNTEERS TO SHARE SOME OF THEIR INFORMATION THAT THEY CHOOSE TO IN TIME WITH EITHER THEIR PHYSICIANS, WITH BIOMEDICAL RESEARCHERS, AND THE LIKE. PRACTICAL OPPORTUNITIES -- >> (INAUDIBLE). >> YEP, USE OF THE CLOUD TO MAKE DATA AVAILABLE TO RESEARCHERS, GREATER UNDERSTANDING OF SIDE EFFECTS FOR PROFILES SO ONCE THERE IS A DIAGNOSTIC IN PLACE OBVIOUSLY THERE ARE TREATMENTS AND OBVIOUSLY WE NEED TO UNDERSTAND THAT BETTER. AND ANOTHER COMPELLING OPPORTUNITY TO BE ADDRESSED IS THAT WE MAY BE ABLE TO UNDERSTAND THROUGH DEVELOPMENT OF DIAGNOSTICS WE MAY BE ABLE TO UNDERSTAND BIOLOGY OF THESE SYSTEMS BETTER. FOLLOW-UP SO THAT AFTER DIAGNOSIS YOU CAN ACTUALLY FOLLOW PATIENTS IN REAL TIME AND LOOK AT THEIR RESPONSE TO THERAPIES. ANALYZE IMAGING POTENTIAL AS A PROGNOSTIC BIOMARKER, BRINGING PARENTS INTO THE CONVERSATION, INCREASE THEIR ENGAGEMENT. HIGH RISK APPROACHES, OBVIOUSLY PUSHING FORWARD WITH NOVEL DATA COLLECTION TECHNIQUES WITHOUT KNOWING THE UTILITY, WHAT EXACTLY WILL THEY BE USED FOR. SHORT-TERM PAYOFFS, NEW NON-INVASIVE METHODOLOGIES BUT NOTE THERE'S A CHALLENGE BEFORE WE REALLY UNDERSTAND THE SPECIFICITY, SENSITIVITY AND ACCURACY OF THESE DIAGNOSTICS. AND THEN THERE ARE LONG-TERM IMPACTS, GREATER UNDERSTANDING OF THE DATA WILL ALLOW CHANGE, WILL CHANGE HOW DIAGNOSIS AND TREATMENT OPTIONS ARE CONCEPTUALIZED AND IMPLEMENTED. WHAT ARE THE MOST SIGNIFICANT CONCEPTUAL CHANGES, CONCEPTUALLY, CULTURAL CHANGE, THERE'S A CONCERN THAT THE DATA THAT PEOPLE HAVE SHARED WITH ORGANIZATIONS WILL BE SOLD AND THE EXAMPLE IS 23ANDME, AND GSK. LOSS OF PATIENT CONTROL. ACADEMIC PARTNERS CAN BE WORRIED ABOUT LOSS OF PUBLICATION OPPORTUNITY, WHEN INTERACTING WITH -- IN THE COMMERCIAL SPACE, COMMERCIALS WOULD LIKE TO HAVE THE I.P., AND SOMETIMES THESE THINGS GET INTERTWINED. CLINICIANS WANT TO DIAGNOSE AND THERE COULD BE A RUSH TO CATEGORIZE PATIENTS WHEN WE DON'T EXACTLY KNOW ALL THE CATEGORIES FOR VARIOUS DISEASES WHICH MAY COME OUT OF SOME OF THESE DIAGNOSTICS. AND WHICH TYPE OF TEST IS BEST FOR THE PATIENT AND THE PHYSICIAN, BASED ON THEIR NEEDS. AVOID OVERPROMISING. WE WANT TO LEARN THROUGH MISTAKES THAT HAVE BEEN MADE AND LOSS OF CONFIDENCE IN THE PUBLIC, AND ALSO THE OPPOSITE, DON'T BE OVERLY NEGATIVE ABOUT NEW THINGS COMING DOWN THE PIKE. WHAT ARE THE MOST SIGNIFICANT PRACTICAL CHALLENGES THAT ARE IMPEDING PROGRESS IN THIS FIELD? SOCIETY STILL HAS A LONG WAY TO GO. REVIEWERS ON STUDY SECTIONS MAY NOT UNDERSTAND SOME OF THESE VERY COMPLEX AND SOCIETAL ISSUES AND BIOMEDICAL RESEARCH IN THIS PARTICULAR AREA. WHERE WILL THE FUNDING COME FROM FOR SOME DEVELOPMENTS? TISSUE COLLECTION SHARING ISSUES, BACK TO BIOBANKING, THE NEED TO EDUCATE HEALTH CARE PROVIDERS, SO THAT THEY HAVE BECOME -- THEY ARE KNOWLEDGEABLE AND CAN DISCUSS THIS WITH THEIR PATIENTS. RETURNING RESULTS IN THE DEVELOPMENT PHASE, HOW DO YOU RETURN RESULTS TO RESEARCH SUBJECTS IF YOU'RE REALLY IN THE DEVELOPENT PHASE, AND THEN ONCE YOU DO HAVE A DEVELOPED DIAGNOSTIC, HOW DO YOU SHARE THOSE RESULTS, THROUGH THE PHYSICIAN OR DO YOU SHARE THROUGH PATIENTS? PHYSICIANS HAVE TO ADOPT NEW TECHNOLOGIES, TECHNOLOGY OFTEN OUTPACES OUR ABILITY TO GAME -- GAUGE BENEFITS TO PATIENTS, THESE THINGS CAN BE DIFFICULT -- IT COULD BE DIFFICULT TO INCENTIVIZE COMMERCIAL ENTITIES TO SHARE SAMPLES AND SHARE DATA. MORE PRACTICAL CHALLENGES, CATEGORIZATION MAKES THE GENERATION OF DIAGNOSTICS DIFFICULT BECAUSE MOST DISEASES ARE HETEROGENEOUS, NOT AS SIMPLE AS TEXT BOOKS MAKE THEM SEEM. DEVELOPING ABILITY TO DO TRIAGE, SO PERHAPS THERE'S A SCREEN. INSURANCE COVERAGE, HOW ARE THESE TESTS GOING TO BE COVERED. WHAT WILL THE DATA THAT WILL BE USED WILL -- FOR THE DIAGNOSTIC MAY NOT BE USED THEN FOR DISCOVERY. LOTS OF ASSOCIATIONS, BUT DIFFICULT TO GET USEFUL DEFINITIVE CLINICAL DATA. THERE HAVE BEEN NEGATIVE EXPERIENCES WITH TREATMENTS. AND SOME OF THESE DIAGNOSTICS MAY LEAD TO EARLY TREATMENTS. AND GENERATING DATA TO DRIVE REVIEWER ENTHUSIASM. DO WE HAVE ENOUGH DATA TO CONVINCE REVIEWERS TO FUND PROJECTS? TECHNICAL CHALLENGES, NEED TO DO A DETAILED GENOMIC COORDINATE MAP OF THE MENSTRUALOME AND WE JUST HEARD THAT IN THE EARLIER ONE, TO PROVIDE A CONTEXT FOR SOME OF THIS DATA. AND WE HAVE TO IDENTIFY WHAT NORMAL IS. NORMAL-- WHAT'S THE NORMAL RANGE FOR AN INDIVIDUAL? WHAT'S A NORMAL RANGE FOR VARIOUS POPULATIONS? THERE'S A LOT OF NEW TECHNOLOGIES THAT ARE CONSTANTLY BEING DEVELOPED, AND AVAILABLE TO SCIENTISTS. BUT ARE THEY REALLY VALIDATED AND COULD THEY BE USED FOR THE DEVELOPMENT OF A DIAGNOSTIC? DO WE REALLY HAVE THE APPROPRIATE TOOLS FOR MANAGING AND INTERPRETING THIS HUGE EXPLOSION OF DATA THAT SOME OF THESE APPS PERHAPS COULD PROVIDE US WITH? YOU KNOW, WE DON'T -- CAN'T QUITE MANAGE ALL OF THAT. ADDITIONAL TECHNICAL CHALLENGES NEED TO ADEQUATELY MIMIC THE HUMAN TISSUE, OBVIOUSLY CELL LINES WILL NOT BE VERY USEFUL. STEM CELLS COULD BE USED AND WE JUST HEARD ABOUT THAT. IS CELL GROWTH NECESSARY OR IS CELL SURVIVAL, THE COLLECTION OF THE SPECIMENS WOULD HAVE TO BE HARMONIZED. SINGLE CELL SEQUENCING NOT FULLY THERE. AT LEAST FOR A DIAGNOSTIC STANDPOINT. CHIP AND 3D TECHNOLOGY IS BEING DEVELOPED BUT HAS A WAY TO GO BEFORE IT CAN BE USED AS A DIAGNOSTIC, IN DIAGNOSTICS. AND CLEARLY COST IS AN ISSUE THAT RUNS ACROSS ALL OF THESE. OOPS. THAT WAS IT. ONE THING I HAPPENED TO THINK OF WHILE STANDING HERE ALSO WE WOULD ONLY BE ABLE TO COLLECT MENSTRUAL BLOOD ON WOMEN WHO ARE MENSTRUATING, SO YOUNG TEENS OR YOUNG GIRLS WHO ARE NOT YET MENSTRUATING OBVIOUSLY THERE ISN'T MUCH OF A WINDOW FOR COLLECTIONS FOR BETTER UNDERSTANDING THE REPRODUCTIVE HEALTH OR HEALTH ISSUES. THE SAME WITH WOMEN WHO ARE ON DIFFERENT TYPES OF EITHER MEDICATIONS OR OCPs SO THEY DO NOT MEN STRAIGHT AND THAT WOULD BE A SIGNIFICANT BARRIER TO DEVELOPING A DIAGNOSTIC IN THIS AREA. SO ANY ADDITIONAL THOUGHTS, ANY COMMENTS, REVISIONS? >> SO WE TALKED SOME IN OUR GROUP, I THINK YOU HAD A SLIDE THAT MENTIONED SORT OF EPIDEMIOLOGIC LONGITUDINAL -- AND OR LONGITUDINAL STUDIES ACROSS POPULATIONS, DIFFERENT ETHNIC AND CULTURAL GROUPS. >> OH, THAT WAS -- >> THAT CAME UP IN OURS TOO. SO I DON'T KNOW WHETHER ANYBODY FROM ONE OF THE OTHER GROUPS WANTS TO STAND ON THAT. >> WHAT THE NORMAL RANGE MIGHT BE FOR SOME OF THESE THING. >> RIGHT. AND THAT CAME UP IN OUR GROUP ALSO, IN A DISCUSSION TO WHAT DEGREE WE DID OR DID NOT FEEL WE KNEW THAT INFORMATION AND TO WHAT DEGREE WE THOUGHT IT WOULD BE WORTH PUTTING SIGNIFICANT RESOURCES INTO DEVELOPNG AND FUNDING THE APPROPRIATE STUDIES WITH THE UNDERSTANDING THAT THAT WOULD MEAN WE COULD NOT DO SOME OTHER THINGS. SO I JUST WANTED TO SEE WHETHER I COULD GENERATE A LITTLE MORE DISCUSSION ON THAT ASPECT. >> SPOILER ALERT FOR THE NEXT PRESENTATION, IT CAME UP IN OUR GROUP AS WELL. >> ESTER'S P.A. ASKS FOR THAT, CHARACTERIZING REPRODUCTIVE TRANSITION, ISN'T THAT A PART OF THAT P.A.? >> YES. BUT IT'S OVER. >> MICROPHONE? >> SO, YES, THAT'S WHAT I AND A GROUP OF US RECOGNIZED AS A LARGE GAP, AND WE DID TALK ABOUT IT, AND THE P.A. WAS PUBLISHED, WHAT, I GUESS THREE OR FOUR YEARS AGO. AND THIS IS -- I THINK THIS IS THE LAST TIME, I THINK IT MAY EVEN BE OVER. IT'S 2018. AND I THINK THAT AT THE TIME WE WERE NOT ALLOWED TO HAVE A SPECIALIZED REVIEW PANEL. I THINK PART OF THE PROBLEM MAY RELATE TO THE FACT THAT IT WAS -- YOU KNOW, THE SIGNIFICANCE AND IMPACT WAS NOT NECESSARILY VIEWED TO BE GREAT, ALTHOUGH I THINK THAT THIS MEETING SHINES A LIGHT ON THE SIGNIFICANCE AND IMPACT OF UNDERSTANDING NORMAL, WHICH WE STILL DON'T UNDERSTAND. SO MAYBE WE WILL BE ABLE TO REVISIT IT, GIVEN THE DISCUSSION AND COMMENTS FROM ALL OF YOU EXPERTS. >> SO, DAVID WINERICK HERE. I AGREE BUT THAT BUT I WOULD SAY THAT ONCE A PAPER COMES OUT FROM THIS MEETING, I WOULD ENCOURAGE RESEARCHERS TO SUBMIT INVESTIGATOR INITIATED APPLICATIONS. IF YOU ONLY SUBMIT APPLICATIONS WHEN WE PUT OUT A P.A., A PAR, RFA, IT'S A HUGE OPPORTUNITY LOST. SO I DO THINK WE NEED TO HAVE SOMETHING COME OUT WHICH SHOWS THAT, YOU KNOW, NIH THINKS THIS IS IMPORTANT. BUT AT THAT POINT THE ONUS IS ON YOU. YOU HAVE IDEAS, YOU THINK IT'S IMPORTANT, THEN I WOULD THROW IT BACK ON YOU TO PUSH IT FORWARD. >> YEAH, I WAS JUST BOEING GOING TO ADD IN THE RESEARCH WE'VE DONE THE TWO GROUPS WE LOOK AT, THE BIGGEST N IS WOMEN WITH ENDOMETRIOSIS AND PCS, DIFFICULT WAS DEFINING NORMAL. YOU CAN'T ACTUALLY HAVE -- AS WE SAID OVER AND OVER AGAIN, YOU HAVE TO HAVE AN UNDERSTANDING OF THE NORMAL STATE. WE ACTUALLY RECRUITED AND GOT TAMPONS FROM OVER 50 WOMEN WHO ARE, IN QUOTES, HYPOTHETICALLY PUTATIVELY HEALTHY CONTROLS AND DID A LOT OF RIGOROUS TESTING, FERTILITY, HORMONE BIOMARKERS, ANSWERING THE SAME SURVEYS WITH WOMEN AS KNOWN ENDOMETRIOSIS AND FAMILY HISTORY, MICRO BIOMES, UNKNOWN LATENT INFECTION. A VERY SMALL PERCENTAGE AFTER FILTERS WERE USED AS HEALTHY NORMAL CONTROLS. >> SO I WOULD SAY IN RESPONSE TO WHAT DAVID SAID, YES, IF PEOPLE PUT IN THEIR APPLICATIONS WE'LL BE ABLE TO CHIP EDIT WITH SMALL ALSO BITS OF INFORMATION BUT REALLY TO DO IT RIGHT WE NEED SOMETHING LIKE SWAN OR THE WOMEN'S HEALTH INITIATIVE, THAT REQUIRES A LOT MORE MONEY AND MAYBE WITH THE POWER OF THIS GROUP, MAYBE WE CAN MAKE A CASE THAT THIS -- YOU KNOW, THIS IS A GOOD EXPENDITURE OF THE FUND. >> AM I CORRECT THAT YOU DON'T TAKE R21s? >> YOU'RE NOT CORRECT. WE DO TAKE R21s. >> WAS THAT SOMETHING THAT WAS THE CASE BEFORE? >> NO, THERE ARE SOME INSTITUTES THAT DO NOT TAKE R21. NCI MAY BE ONE. >> HAS TO BE A HIGH PRIORITY PROGRAM AREA. WE TAKE R21s BUT IT HAS TO HIT -- >> NOT HEARING. >> SO WE USED TO TAKE R21s ACROSS THE BOARD, ABOUT TWO YEARS AGO I THINK THE POLICY OR THE -- WE CHANGED THE RULES, AND SO NOW WE TAKE R21s BUT THEY HAVE TO BE DIRECTED TO AN AREA OF HIGH PROGRAM PRIORITY, ALL OF THOSE ARE PUBLISHED ON EACH OF THE BRANCHES' PAGES ON THE WEB. >> THANK YOU. >> I WILL ADD A COROLLARY TO THAT THOUGH. MANY OF THE PROGRAM PRIORITIES ARE EXTREMELY BROAD, SUCH AS OURS IS NON-INVASIVE DIAGNOSTICS IN GYNECOLOGIC DISORDERS. AND THE OTHER ONE IS LONGITUDINAL STUDIES IN GYNECOLOGIC DISORDERS. SO -- >> WE HAVE ONE THAT'S ANIMAL MODELS. >> RIGHT. SO I THINK ANYWAY PERHAPS THE MISPERCEPTION ABOUT NICHD AND R21s, SOME INSTITUTES DO NOT ACCEPT THEM, OTHERS SUCH AS US PULLED OUT OF THE NIH-WIDE ONE, SO THAT WE COULD BE MORE DIRECTED, YEAH, IN TERMS OF WHAT WE WERE INTERESTED IN. BUT ABSOLUTELY, WE STILL WELCOME THEM. >> SO LAST BUT CERTAINLY NOT LEAST, MENSTRUAL HEALTH LITERACY AND ADVOCACY. >> ALL RIGHT. ONE OF THE THINGS I WILL MENTION IS MISSY LAVENDER IT TO LEAVE THIS DISCUSSION, SHE WOULD BE INSTRUMENTAL TO HIGHLIGHT ADVANCES AND OPPORTUNITIES AND WHERE WE SHOULD BE REALLY GOING WITH THIS. WE'RE HOPEFUL THAT WE CAN REVISE THE SLIDES, AS A GROUP AFTERWARDS, TO GET HER INPUT AND INCORPORATE HER OPINIONS AND HER EXPERTISE IN THIS AREA. THIS IS WHAT WE CAME UP WITH. TERMS OF MOST SIGNIFICANT ADVANCES mHEALTH AND APES FOR CYCLE TRACKING, MONITORING, REALLY GETTING TO WOMEN IN THEIR HOMES, EXPERIENCING HEAVY MENSTRUAL BLEEDING OR REGULAR MENSTRUAL BLEEDING SO WE CAN REALLY GET THAT RICH DATA AT A POPULATION LEVEL RATHER THAN RELYING ON WOMEN WHO ARE COMING IN FOR CLINICAL ENCOUNTERS. THERE'S SOME PUBLISHED DATA IN TERMS OF THE NUMBER OF HOURS AND IMPACT. WE THINK HAVING ANY DATA ON THAT IS A SIGNIFICANT IMPACT. EMBRACING PATIENT AND PATIENT-CENTERED OUTCOME MEASURES, ALTHOUGH NOT TO THE LEVEL IT NEEDS TO BE TO REALLY HARNESS THIS FOR CHANGING RESEARCH, MOVING AWAY FROM OBJECTIVE MEASURES AND ASSESSMENT AS THE ONLY WAY TO MEASURE A PERSON'S SYMPTOMS AND EXPERIENCE WAS IDENTIFIED AS AN IMPACT. PUBLIC PATIENT ADVOCACY, SO WE WERE ALSO ASKED TO ADDRESS HOW ADVOCACY CAN IMPACT THIS, AND PATIENT ADVOCATES TALKING ABOUT RESEARCH, TALKING ABOUT THESE REPRODUCTIVE HEALTH ISSUES ARE HUGE BECAUSE THEY GET THE CONVERSATION STARTED, THEY GET PEOPLE TALKING ABOUT IT AND POTENTIAL GET PEOPLE INTERESTED IN STARTING FUNDING LINES FOR IT. TALKED ABOUT TECHNOLOGY, SO TECHNOLOGY IS EXPANDING RAPIDLY AND ASSISTS PEOPLE TO DISCLOSE MORE ON COMPUTER THAN IN PERSON AND ALLOWS US TO COLLECT THIS KIND OF ROBUST DATA FROM PEOPLE ON A REGULAR BASIS. STANDARDIZATION OF LANGUAGE USED, USED BY FETAL MENSTRUAL DISORDERS COMMUNITY, GETTING PEOPLE ON THE SAME PAGE WITH PHENOTYPES AND ETIOLOGIES OF HEAVY MENSTRUAL BLEEDING AND HOW WE SHOULD DESCRIBE THE SYMPTOM OF MENSTRUAL BLEEDING FOR DATA COLLECTION IS SUPER IMPORTANT IN TERMS OF FREQUENCY, DURATION, REGULARITY AND VOLUME. AND THEN THE USE OF MORE OBJECTIVE TOOLS TO ASSESS MENSTRUAL CYCLE IN A PATIENT-FRIENDLY WAY, SO GETTING TO THE SYMPTOM OF MENSTRUAL BLEEDING, GETTING AT IT WITH A PATIENT-FRIENDLY CONTEXT. OTHER ADVANCES, THAT WAS ON THE PREVIOUS SLIDE. HARNESSING EHR TO DOCUMENT PATIENT DATA AND PATIENT REPORTED OUTCOMES IS ONE OF THE OPPORTUNITIES. I THINK WHAT WE MEANT HERE WAS IT'S THIS RAPID EXPANSION OF EHRs, MORE OFFICES ARE USING IT. I DISCLOSE THAT THERE THEY ARE THE BANE OF CLINICIANS LIKE MYSELF, A WAY TO USE THEM FOR GOOD WE'LL TALK ABOUT IN THE NEXT SLIDE BUT THEY ARE OUT THERE AND AVAILABLE. GENDER BY AS IS BEING RECOGNIZED INCLUDING WOMEN IN CLINICAL TRIALS AND CLINICAL RESEARCH SO THOSE WERE SIGNIFICANT ADVANCES OVER THE PAST FIVE YEARS. THAT'S SMALL TEXT. IN TERMS OF WHAT ARE THE MOST COMPELLING OPPORTUNITIES TO BE ADDRESSED IN ORDER TO FURTHER THE FIELD, I'LL HAVE TO LOOK AT THIS SLIDE HERE. WE'RE MAKING OUR WAY IN TERMS OF PATIENT-REPORTED OUTCOMES, WE NEED TO INCREASE FOCUS TO GET IT OUT OF THIS MUTUAL ADMIRATION SOCIETY IN TERMS OF HOW WE FEEL ABOUT KEEPING THE PATIENT THE CENTER BUT MAKE SURE THAT IS REALLY PERMEATING BEYOND THE WALLS OF THIS DISCUSSION AND MAKE SURE IT'S MAKING IT OUT THERE. SELECTION OF STANDARDIZED MEASURES, SO WE SAW AN EXPLOSION OF PATIENT-REPORTED OUTCOME MEASURES BUT THE OPPORTUNITY HERE IS TO FIGURE OUT WHAT ARE THE STANDARDIZED MEASURES THAT WE THINK INVESTIGATORS SHOULD BE COLLECTING ACROSS ALL RESEARCH. REDEFINING CONTEMPORARY NORM SO THIS IS SOMETHING PREVIOUS GROUP HAD MENTIONED, THESE NORMS ARE BASED ON OLD POPULATION-BASED DATA AND SOMETIMES LITTLE POCKETS OF STUDIES THAT DON'T REPRESENT THE DIVERSE POPULATION THAT WE CURRENTLY HAVE IN THE UNITED STATES. AND DIVINING NORMS WILL HELP FIRST FIGURE OUT WHO IS NORMAL AND ABNORMAL FOR SOME OF THESE LARGE DATABASE STUDIES AND SOME OF THESE MENSTRUALOME STUDIES, BUT ALSO HELP US BETTER GET TO PATIENT EDUCATION AND PATIENT IDENTIFICATION. THE NEED FOR LONGITUDINAL DATA AND IMAGING BY POPULATION IS AN OPPORTUNITY. HOW THE MENSTRUAL CYCLE CHANGES OVER THE LIFE COURSE, AND ADDING THESE MEASURES ONTO OTHER ONGOING STUDIES, SO THERE'S MULTIPLE -- MULTIPLE OTHER ONGOING STUDIES WERE BROUGHT TO OUR ATTENTION IN OUR DISCUSSION, AND HUGE POTENTIAL TO INCLUDE GYNECOLOGIC HEALTH MEASURES AND PATIENT-ORIENTED MEASURES RELATED TO THE MENSTRUAL CYCLE INTO ONGOING LARGE SCALE LONGITUDINAL TRIALS. IN TERMS OF HIGH RISK APPROACHES, I THINK LEVERAGING ELECTRONIC MEDICAL RECORDS AND FIGURING OUT HOW TO INCORPORATE PATIENT-REPORTED OUTCOMES FROM THIS ONE HIGH RISK APPROACH, LARGE LONGITUDINAL STUDIES WITH IMAGING, PAIN SCALES, AND BLEEDING MEASURES WOULD MAKE SENSE. SHORT-TERM PAYOFFS, TECHNOLOGIC SOLUTIONS FOR FLAGGING ABNORMALITIES, SO PROLONGED BLEEDING, INCREASED USE OF PADS PER DAY, ET CETERA, TO ALERT WOMEN TO SEEK MEDICAL HELP SO HOW WE COULD UTILIZE THESE SMARTPHONE APPLICATIONS AND mHEALTH TO GET TO WOMEN TO IDENTIFY THEY ARE HAVING A PROBLEM SOONER, TO DIMINISH THIS, THIS AMOUNT OF TIME WOMEN ARE DELAYING SEEKING CARE AND TREATMENT WHEN THEY HAVE A PROBLEM THEY NEED TO HAVE TREATED. LONG-TERM IMPACTS, DEVELOPMENT AND INCREASED AVAILABILITY OF TOOLS TO FACILITATE PATIENT-CENTERED CARE. SO THE MOST SIGNIFICANT CONCEPTUAL PRACTICAL OR TECHNICAL CHALLENGES, CONCEPTUAL, REDUCE STIGMA AND MEASURE THIS, TAKING A LIFESPAN PERSPECTIVE. ADDING MENTAL HEALTH ISSUES TO CONCEPTUALIZATION OF MENSTRUAL SCIENCE, HISTORICAL LACK OF CROSS-POLLINATION, WOMEN'S HEALTH DOESN'T ALWAYS HAVE A SEAT AT THE TABLE AND WE THINK SOME OF THE BEST PART OF THE MEETING WAS GETTING PEOPLE WHO DO VERY, VERY, VERY DIFFERENT THINGS TO TALK TO ONE ANOTHER BECAUSE I MEAN THE OPPORTUNITIES ARE ENDLESS, THERE'S SO MUCH INTERESTING THINGS THAT -- SO MANY INTERESTING THINGS WE COULD DO, WE DON'T KNOW WHAT THAT IS UNLESS WE'RE SITTING TOGETHER HEARING THE PERSPECTIVE AND HEARING ABOUT EACH OTHER'S SCIENCE. CHANGING MODELS OF CARE FROM PATERNALISTIC TO PATIENT CENTERED, HOW WE DELIVER CARE TO PATIENTS IN A PATIENT-CENTERED MODEL AND DEVELOPING THE TOOLS THAT CAN HELP WITH THAT. PRACTICAL IS EXPEDIENT SOLUTIONS SUCH AS -- I'M NOT SURE WHAT THAT IS. FINDING THE RIGHT FUNDING SOURCE, GENDER AND SEX BIAS, MEDICALIZATION OF MENSTRUAL DISORDERS VERSUS PATIENT-CENTERED APPROACH AND ACCESS. AND THEN, OH, THE COMPUTER IS MOVING. SORRY. THE FONT IS SO SMALL I CAN'T READ IT ON ANY OF THESE. I DON'T WEAR CHEATERS YET. OKAY. SO TECHNICAL, BEWARE THAT WE TALK ABOUT MENSTRUAL DISORDERS DON'T WANT TO LUMP EVERYTHING TOGETHER, POLYPS, FIBROIDS, IT'S ALL DIFFERENT, BE CLEAR ABOUT THE PHENOTYPE BECAUSE THE APPROACH IN TERMS OF ASSESSMENT, APPROACH IN TERMS OF DIAGNOSTICS, THE APPROACH IN TERMS OF TREATMENT COULD BE QUITE DIFFERENT. AND THAT THERE ARE MANY PLATFORMS FOR EHR SO ALTHOUGH WE IDENTIFIED THIS AS A HUGE POTENTIAL FOR PATIENT-CENTERED CARE DELIVERY, POINT OF CARE, IMPLEMENTATION INTO EHR FOR CLINICAL CARE AND RESEARCH, SO MANY PLATFORMS, MOST ARE BILLING SYSTEMS SO PUSHING THEM TO THE LIMIT TO MAKE SURE RESEARCH IS ACCESSIBLE WILL BE A CHALLENGE BUT IT'S NOT IMPOSSIBLE. SO THAT'S IT. WE DO NEED SOME INPUT, TO FIGURE OUT EVERYTHING WE WANT TO INCLUDE HERE. THERE'S A LOT THERE. BUT THIS IS A GREAT START. HAPPY TO TAKE ANY QUESTIONS. >> ALL RIGHT. NO QUESTIONS. COMMENTS, ADDITIONS? OKAY. WE HAVE ONE. >> ONE THING. I REALLY LIKE WHAT I LEARNED ABOUT PATIENT CENTERED OUTCOMES, SEEING HOW THE PATIENT IS EXPERIENCING. THERE'S EVENTS IN HER LIFE. BUT I THINK WE STILL ALSO NEED TO THINK OF HOW TO CORRELATE OR RELATE THIS TO SORT OF PHYSICAL EVIDENCE ABOUT WHATEVER YOU WANT TO CALL IT, DISORDERS OF STATES, RIGHT? BECAUSE AT THE END, ANY KIND OF MEDICAL INTERVENTION HAS TO BE TRUE TO THE BIOLOGICAL MECHANISM, RIGHT? WE WON'T HAVE THE RIGHT OUTCOME FOR THE PATIENT, BUT WE CANNOT SORT OF COMPLETELY REPLACE ANY CLASSIFICATION OF STATES, YOU KNOW, WITHOUT ANY BIOLOGICAL BASIS. I THINK IT'S IMPORTANT TO HAVE IT AT TWO DIFFERENT LEVELS OF ASSESSMENT, AND THINK ABOUT THE RELATION RATHER THAN REPLACE ONE BY THE OTHER. >> I THINK YOU DO NEED THE BASIC SCIENCE RESEARCH LOOKING AT THE ENDOMETRIUM, NOT OUTSIDE OF MY WHOLE HOUSE, WHAT THE ENDOMETRIUM GROUP LOOKED AT BUT YOU DON'T HAVE TO HAVE A WOMAN PROVE HER BLEEDING IMPROVED IN TREATMENT. IF YOU FIGURE OUT A WAY TO GENERATE A QUESTIONNAIRE, CAN YOU QUANTITY SYMPTOM AND SYMPTOM INPUT AND MEASURE THAT WAY. IN URINARY INCONTINENCE WE DON'T MAKE WOMEN MEASURE AMOUNT OF LEAKAGE THEY ARE HAVING AND AMOUNT THEY ARE VOIDING AND HOW MUCH THEY ARE FILLING THEIR INCONTINENCE PAD TO SEE HOW THEIR INCONTINENCE TREATMENT IS WORKING. SIMILARLY I DON'T KNOW THAT WE HAVE TO SELECT OBJECTIVE BLOOD LOSS CRITERIA TO DETERMINE HOW IT WORKS BUT IT HAPPENS AT THE MECHANISTIC LEVEL WITH TREATMNT DEVELOPMENT THAT YOU'RE PROVING THAT THE MECHANISM OF ACTION OF THIS NEW TREATMENT MAKES SENSE PATHOPHYSIOLOGICLY BUT WHEN YOU LOOK AT EFFECT OF THAT TREATMENT, PATIENT REPORTED OUTCOMES MEASURES, IF YOU FIGURE OUT A WANT TO STANDARDIZE, VALIDATE AND QUANTIFY THEM, NOT ALL MEASURES ARE EQUAL, THAT'S REALLY THE WAY TO GO WHEN WE'RE LOOKING AT EVALUATING TREATMENT, THAT'S MY PERSPECTIVE ON THINGS. >> THIS IS ALL A LOT OF MY FAVORITE STUFF. I LOVE THIS. I DON'T WANT TO LEAVE. I WANT TO TALK ABOUT PERIODS FOREVER. [LAUGHTER] ONE THOUGHT I KNOW, PAPERS THAT WILL COME OUT OF THIS MEETING, IT WILL BE INTERESTING. I'VE BEEN STRUCK SITTING HERE, AND THIS IS JUST MY OWN LITTLE BUBBLE, I'VE BEEN LIVING IN, WANTING TO REACH CLINICAL AND PUBLIC HEALTH AUDIENCE. NOT THAT THEY DON'T INTERSECT BUT PER YOUR COMMENT, YOU PUT IT BEAUTIFULLY, NOT THAT WE'RE PREACHING TO THE CHOIR BUT WHATEVER BUBBLE, WE'RE ALL IN THE ROOM TOGETHER. >> MUTUAL ADMIRATION SOCIETY. >> I DON'T KNOW IF DOWN THE ROAD THERE'S SPECIAL ISSUES, ONE MORE GEARED TO PUBLIC HEALTH, THE CLINICAL WORLD, HOW DO WE PUT TOGETHER WHAT IN THE LAST TWO DAYS HAS ALL SEEMED TO INTERLINK, SETS OF ISSUES, RAISING GAPS, COMMUNICATION DOWN TO THE BIOME. THINK THAT COULD BE INTERESTING OVER THE COMING YEARS TO PULL TOGETHER THE DIFFERENT AREAS THAT WE DO SEE LINKAGES AND LOOPS THAT WOULD MAYBE STIMULATE OTHER PEOPLE TO GROW THE MUTUAL ADMIRATION SOCIETY. >> COMPLETELY AGREE. >> YES, YOU MAKE A VERY GOOD POINT. THIS DOESN'T NEED TO NECESSARILY BE THE BEGINNING AND END OF THIS DISCUSSION. AND PERHAPS THERE CAN BE QUITE A FEW OFFSHOOTS DOWN THE LINE. IN FACT, I HOPE SO. >> YEAH. ALL RIGHT. I'M GOING O HEAD BACK TO MYCETE -- MY SEAT. >> SO WITH THAT ON BEHALF OF THE BRANCH I WANT TO ISSUE A HEARTY THANK YOU TO PHENOMENAL SPEAKERS, EVERYONE WHO JOINED ON SITE AND THOSE WHO WATCHED ONLINE. WE HAVE HAD SUCH ROBUST DISCUSSIONS AND I HOPE AS WE JUST MENTIONED THAT WE WILL CARRY FORTH ENTHUSIASM AND SEE THIS AS A JUMPING OFF POINT FOR FURTHER CONVERSATIONS AND FURTHER MEETINGS OF OUR MUTUAL ADMIRATION SOCIETY AND MENSTRUATION FAN CLUB. THANK YOU AGAIN AND SAFE TRAVELS. [APPLAUSE]