THANK YOU FOR JOINING TODAY'S LISTENING SESSION HOSTED BY THE NIH RESEARCHING COVID TO ENHANCE RECOVERY INITIATIVE ALSO KNOWN AS RECOVER. THIS EVENT IS BEING RECORDED AND ALL PARTICIPANTS HAVE BEEN MUTED. BEFORE WE BEGIN WE'LL SHARE A FEW HOUSEKEEPING NOTES. AS A PARTICIPANT YOU'LL HAVE THE ABILITY TO UNMUTE YOURSELF AND TURN ON YOUR CAMERA AND VIEW PARTICIPANTS AND PARTICIPATE IN THE CHAT. WHEN WE GET TO THE DISCUSSION PORTION OF TODAY'S AGENDA WE'LL ENCOURAGE YOU TO TURN YOUR CAMERA ON TO ENGAGE IN THE DISCUSSION AND YOU'RE WELCOME TO TYPE IN THE CHAT PANEL. DURING THE Q&A AND DISCUSSION, WE WILL ASK YOU VIRTUALLY RAISE YOUR HAND TO SPEAK. YOU CAN DO SO BY CLICKING ON THE REACTION BUTTON AND THEN RAISE HAND. ONE OF THE HOSTS WILL THEN INVITE TO YOU UNMUTE YOURSELF. FINALLY, WE ENCOURAGE EVERYONE TO CHANGE YOUR NAME AS IT APPEARS IN ZOOM IN ORDER TO ADD YOUR ORGANIZATION AND LOCATION. TO CHANGE YOUR NAME, YOU CAN CLICK ON PARTICIPANTS, THEN MORE, RENAME AND THEN FROM THERE YOU CAN CHANGE YOUR NAME. THANK YOU ALL AND NOW I WILL TURN IT OVER TO DR. WILLIAMS TO INTRODUCE TODAY'S SPEAKERS. >> GOOD AFTERNOON. THANK YOU FOR JOINING US FOR TODAY'S LISTENING SESSION FOR THE NIH RESEARCHING COVID TO ENHANCE RECOVERY INITIATIVE ALSO CALLED NIN -- NIH RECOVER. I'M NASA TASHA WILLIAMS FOR THE INSTITUTE FOR EXCELLENCE AND HEALTH EQUITY AND THE LEAD FOR THE CLINICAL SCIENCE CORPS. I'M REALLY HAP TO BE HERE WITH YOU ALL TODAY AND I AM ONE OF THE CO-HOSTS FOR THE SESSION. TODAY'S SESSION IS THE SECOND IN A SERIES OF DISCUSSIONS TO HEAR FROM PATIENT, COMMUNITY AND OTHERS AFFECTED BY POST-ACUTE SEQUELAE OF SARS COV2 OR PASC INCLUDING LONG COVID. IN THIS CASE WE ARE SPECIFICALLY INTERESTED IN HOW LONG COVID IS AFFECTING BLACK AND INDIGENOUS COMMUNITIES OF COLOR. RECOGNIZING COMMUNITIES OF COLOR ARE DISPROPORTIONATELY AFFECTED BY COVID-19 AND MAY SIMILARLY EXPERIENCE A BURDEN OF LONG COVID. HISTORICALLY, WHAT WE KNOW IS MISINFORMATION AND STRUCTURAL FACTORS SUCH AS ACCESS TO HEALTH CARE MAY POSE AS BARRIERS FOR RACIAL AND ETHNIC COMMUNITIES. IT'S ALSO LIKELY THAT THESE BARRIERS EXIST WHEN ADDRESSING LONG COVID. AS WE SEEK TO BETTER UNDERSTAND THE NEEDS AND PRIORITIES OF APPRECIATES WHO ARE MOST AFFECTED BY LONG COVID, YOUR ORGANIZATION'S VOICE IS A VALUABLE PART OF THIS CONVERSATION. I WILL NOW TURN IT OVER TO MY CO-HOST DR. ANDREA LERNER TO INTRODUCE HER SELF. OVER TO YOU. >> THANK YOU, DR. WILLIAMS. GOOD AFTERNOON, EVERYONE AND THANK YOU FOR JOINING. MY NAME IS ANDREA LERNER AT THE NATIONAL INSTITUTE OF ALLERGY AND INFECTIOUS DISEASES PARTS OF THE NATIONAL INSTITUTES OF HEALTH. BACK TO YOU, DR. WILLIAMS. >> THANK YOU, DR. LERNER. NOW I WANT TO INTRODUCE THE DISCUSSION MODERATOR. WE'RE DELIGHTED TO HAVE DR. JAMES HILLDRETH THE PRESIDENT AND CHIEF EXECUTIVE OFFICER OF THE NATION'S LARGEST PRIVATE INDEPENDENT HISTORICALLY BLACK ACADEMIC HEALTH SCIENCES CENTER. HE IS ALSO A TEMPORARY VOTING MEMBER OF THE VACCINES AND RELATED BIOLOGICAL PRODUCTS ADVISORY COMMITTEE, A MEMBER OF THE ADVISORY COMMITTEE TO THE NIH DIRECTOR AND SERVED ON THE PRESIDENT'S COVID-19 TASK FORCE. WE ARE HONORED TO HAVE HIM JOIN US TODAY. NOW THAT WE FINISHED OUR INTRODUCTIONS, WE WILL BEGIN WITH A BRIEF OVERVIEW OF THE RECOVER INITIATIVE AND THEN THE REMAINING SESSION WILL FOCUS ON OUR DISCUSSION. I'LL HAND IT OVER TO YOU, DR. LERNER. >> THANK YOU VERY MUCH. SO I'LL JUST TAKE A FEW MOMENTS TO TALK ABOUT THE PURPOSE OF ZA'S LISTENING SESSION. AS DR. WILLIAMS MENTIONED, TODAY WE ENGAGE WITH PATIENTS AND ORGANIZATIONS REPRESENTING COMMUNITIES OF COLOR INCLUDING THOSE HARDEST HIT BY COVID TO BETTER UNDERSTAND THE LEVELS OF AWARENESS OF LONG COVID AND DISCUSS OPPORTUNITIES TO PROMOTE DIVERSE AND INCLUSIVE PARTICIPATION IN THE RECOVER INITIATIVE STUDIES. NOW I'LL JUST GIVE A BRIEF OVERVIEW OF THE RECOVERY INITIATIVE AND WHAT IT'S STUDYING. SO I'D LIKE TO JUST CLARIFY SOME TERMINOLOGY. SO THE RECOVER INITIATIVE IS STUDYING THE POST-ACUTE SEQUELAE OF SARS COV2 INFECTION. THIS ABBREVIATED P-A-S-C, PASC. THIS TERM REFERS TO THE EFFECTS OF COVID-19 THAT -- THE EFFECTS COVID-19 HAS ON THE BODY AFTER THE INITIAL PARTS OF THE ILLNESS. SO THE LATER TERM AFFECTS OF COVID-19 AND SARS COV2 INFECTION THE VIRUS THAT CAUSES COVID-19. UNDER THIS UMBRELLA, IS ALSO WHAT IS REFERRED TO AS LONG COVID. PASC IS MEANT TO REFER TO A BROAD VARIETY OF AFFECTS. WHAT IS OFTEN REFERRED TO AS LONG COVID YOU MAY HAVE HEARD PEOPLE DESCRIBING ONGOING SYSTEMS, WAXING AND WANING SYSTEMS THAT IMPACT QUALITY OF LIFE AFTER THE INITIAL PERIODS OF COVID-19. SO PATIENTS VARY IN THE TIMING AND EXTENT OF RECOVERY. PEOPLE REPORT SYMPTOMS RANGE FROM MILD TO TRULY INCAPACITATING AND THESE SYMPTOMS CAN INVOLVE MULTIPLE PARTS MUCH THE BODY AND AFFECT OVERALL QUALITY OF LIFE. SYMPTOMS REPORTED DUE TO LONG COVID CAN RANGE FROM THINGS LIKE FATIGUE, SHORTNESS OF BREATH, BRAIN FOG OR DIFFICULTY THINKING OR CONS -- CONCENTRATING, GASTROINTESTINAL PROBLEMS AND ANXIETY AND DEPRESSION AND SOMETIMES CAN LAST A LONG TIME. PEOPLE MAY HAVE ONGOING SYMPTOMS SIMILAR TO THE SYMPTOMS THEY HAD EARLIER WITH COVID-19 THAT PERSIST OR PEOPLE CAN DEVELOP NEW SYMPTOMS THAT CAN WAX AND WANE. WHILE WE DON'T FULLY UNDERSTAND THE IMPACT OF POST-ACUTE SEQUELAE AND SARS COV2 AND LONG COVID, WE KNOW GIVEN THE SCOPE OF COVID-19, THIS IS LIKELY A LARGE PUBLIC HEALTH IMPACT AND IMPORTANT TO ACKNOWLEDGE THAT. SO NOW I'LL JUST PAUSE TO SEE IF THERE ARE ANY QUESTIONS ABOUT PASC OR LONG COVID THAT I'VE JUST DISCUSSED. OKAY. I'M NOT SEEING HANDS RAISED OR ANYTHING IN THE CHAT. SO NEXT I TOLD YOU A LITTLE BIT ABOUT WHAT RECOVER IS STUDYING. NEXT I'LL TALK ABOUT THE GOALS AND STRUCTURE OF THE RECOVER INITIATIVE STUDIES. SO THE GOAL OF RECOVER IS TO IMPROVE RAPIDLY OUR UNDERSTANDING OF AND ALSO THE ABILITY TO PREDICT, TREAT AND PREVENT PASC AND UNDER THAT UMBRELLA INCLUDING LONG COVID. SO THE KEY SCIENTIFIC AIMS WE WOULD LIKE TO UNDERSTAND THE FULL CLINICAL SPECTRUM. SO ALL THE DIFFERENT MANIFESTATIONS OF PASC AND THE BIOLOGY THAT UNDER LIES THE RECOVERY FROM COVID-19. WE'D LIKE TO DEFINE THE RISK FACTORS, THE INCIDENTS AND PREVALENCE AND DIFFERENT SUBTYPES OF PASC BECAUSE WE'RE CALLING EVERYTHING BY ONE NAME NOW BUT AS WE LEARN MORE ABOUT IT, THIS IS LIKELY MULTIPLE DIFFERENT CONDITIONS. WE AIM TO STUDY THE PATHOGENESIS OF PASC AND LONG COVID OVER TIME. AND THIS MAY BE ABLE TO BE RELATED TO OTHER NONE DISORDERS AND INFORM OUR KNOWLEDGE ABOUT OTHER DISORDER. AND ULTIMATELY WE'D LIKE TO IDENTIFY INTERVENTION TO TREAT AND PREVENT PASC. SO WHAT IS THE RECOVER RESEARCH APPROA APPROACH. THE GOALS OF THE INITIATIVE ARE TO UNDERSTAND PASC INCLUDING LONG COVID, ADVANCE CLINICAL TRIALS AND INFORM TREATMENT AND PREVENTIVE STRATEGIES FOR PASC. SO THIS WILL BE ACCOMPLISHED BY MULTIPLE DIFFERENT TYPES OF STUDIES. SO AT THE HEART OF THE RECOVER INITIATIVE IS WHAT WE'RE CALLING THE RECOVERY COHORT. TO GET INTO THIS MORE IN THE NEXT SLIDE, BUT THIS IS A COHORT OF INDIVIDUALS WITH COVID-19 AND PASC AND THEY'LL BE FOLLOWED OVER TIME TO UNDERSTAND THE PROGRESSION OF THEIR RECOVERY. COMPLIMENTS AND IN ADDITION TO THE RECOVERY COHORT AND PART OF THE RECOVER INITIATIVE WILL BE STUDIES OF ELECTRONIC HEALTH RECORDS, STUDIES OF REAL WORLD DATA AND INCLUDED IN THAT ARE THINGS LIKE MOBILE HEALTH AND WEARABLE TECHNOLOGIES THAT CAN RECORD DATA AS PEOPLE RECOVER. AND ALSO STUDIES OF HUMAN TISSUE. AND SOME FEATURES UNDER PINNING ALL THESE TYPES OF STUDIES ARE THEY INVOLVE HUNDREDS OF RESEARCHERS AND SITES ACROSS THE WHOLE COUNTRY. WE AIM FOR INCLUSIVE AND DIVERSE PARTICIPATION IN THESE STUDIES. THEY'LL ENROLL CHILDREN, ADULTS AND PREGNANT INDIVIDUALS. COMMUNITY ENGAGEMENT IS A CENTRAL TENET AND MULTIPLE RESEARCHERS WITH MULTIPLE TYPES OF EXPERTISE ARE INVOLVED. NOW I'LL TURN IT BACK OVER TO DR. WILLIAMS TO TALK ABOUT THE NATIONAL SCOPE OF THE RECOVER INITIATIVE. >> THANK YOU SO MUCH, DR. LERNER. AS YOU CAN IMAGINE, A STUDY OF THIS MAGNITUDE REALLY WILL TAKE PLACE ACROSS THE COUNTRY. THE RECOVER COHORT ANTICIPATE ENROLLING, ADULTS, CHILDREN AND THEIR CAREGIVERS AND PREGNANT PARTICIPANTS AND THEIR NEWBORN INFANTS. IT WILL HAVE HUNDREDS OF CLINICAL SITES ACROSS THE NATION TO REFLECT THE ETHNIC AND RACIAL DIVERSITY AND REACHING ALL REGIONS AND AIMED TO ADDRESS THE FUNDAMENTAL QUESTIONS IN THE FIRST 12 MONTHS, PROVIDE LONGITUDINAL FOLLOW-UP AND LAY THE FOUNDATION FOR STUDIES OF PATHOBIOLOGY AND CLINICAL INTERVENTIONS. AND ANALYSIS OF ELECTRONIC HEALTH RECORDS OF MORE THAN 36 MILLION ADULTS AND PEDIATRIC PATIENTS. THE RECOVER CONSORTIUM INCLUDES A MAIN PROTOCOL DEVELOPMENT. DEVELOPING THE MAIN PROTOCOL INCLUDED COLLABORATION WITH OVER 200 INVESTIGATORS, 33 PATIENTS WITH INPUT FROM NIH SUBJECT MATTER EXPERTS, PROVIDED PHASE 1 AWARDS TO 30 CLINICAL COHORTS AND THREE LARGE SCALE ELECTRONIC HEALTH RECORD STUDIES. IT IS ESSENTIAL FOR HARMONIZING THESE STUDIES AND THAT INVOLVES STANDARDIZING SCIENTIFIC AIMS, TESTS AND PROCEDURES. A UNIFIED ENTRY CRITERIA BASED ON THE WORLD HEALTH ORGANIZATION FOR ALL COHORTS MAKING CONSISTENT DATA STRUCTURE ACROSS ALL COHORTS AND A HARMONIZED DATA MANAGEMENT AND ANALYSIS PLAN. WE'LL CREATE TIERED PHENOTYPING APPROACH FOR ADULTS AND PEDIATRIC COHORTS AND PLANNED ADAPTIVE DESIGNS REALLY BASED ON CONTINUING ANALYSIS AND THE EVOLVING SCIENCE AS WE CONTINUE TO LEARN ABOUT COVID. IN SUM, ALL COHORT AND SITE STUDIES ARE HARMONIZED UNDER A MAIN PROTOCOL. AS WE MENTIONED THE RECOVER INITIATIVE IS PATIENT FOCUSSED. SOME FEATURES INVOLVE INCLUDING OVER 400 ATTENDEES AND THE DISCUSSION AND REPRESENTATION ACROSS THE GOVERNANCE STRUCTURE AND COMMUNITIES AND REPRESENTATIVES WILL BE INCLUDED AND COMMUNITY ENGAGEMENT ADDS VALUE TO EVERY ELEMENT OF THE INITIATIVE. WE'LL TAKE A BRIEF PAUSE TO SEE IF THERE'S ANY QUESTIONS AT THIS POINT. >> I HAVE ONE QUESTION, IF I MAY ASK. IT SEEMS LIKE YOU'LL BE USING ELECTRONIC HEALTH RECORDS. I KNOW CERNA AND EPIC ARE THE TWO UTILIZED. FLORIDA PROVIDERS THAT AREN'T ON THOSE SYSTEMS, WILL THAT BE ALTERNATIVE WAYS TO PARTICIPATE IF THEY DON'T HAVE ACCESS TO THOSE SYSTEMS? >> WE WOULD BE HAPPY TO WORK WITH ANY OF TO THE SITES DOING RECRUITMENT TO BETTER UNDERSTAND THEIR NEEDS BUT MANY OF THESE SITES ARE PART OF THE ELECTRONIC HEALTH RECORDS AND WE WELCOME DISCUSSIONS TO BETTER UNDERSTAND THOSE NEEDS. THANK YOU FOR YOUR QUESTION. SO NOW I WILL JUST LIKE TO REMIND US AGAIN ABOUT OUR MODERATOR FOR TODAY'S LISTENING SESSION. DR. JAMES HILLDRETH AND SHARE IN ADDITION TO HIS POSITION, HE GRADUATED FROM OXFORD UNIVERSITY WITH A Ph.D. IN IMMUNOLOGY AND OBTAINED HIS M.D. FROM JOHNS HOPKINS UNIVERSITY AND LATER BECAME THE FIRST AFRICAN AMERICAN IN THE 125-YEAR HISTORY OF JOHNS HOPKINS SCHOOL OF MEDICINE TO EARN FULL PROFESSORSHIP AND TENURE IN THE BASIC SCIENCES AND ALSO SERVED AS THE FIRST AFRICAN AMERICAN DEAN OF THE COLLEGE OF BIOLOGICAL SCIENCES AT UNIVERSITY OF CALIFORNIA DAVIS. AND OCTOBER, 2008 HE WAS HONORED FOR HIS CONTRIBUTIONS TO MEDICAL SCIENCE BY ELECTION TO THE INSTITUTE OF MEDICINE. PART OF THE NATIONAL ACADEMY OF SCIENCES. AND HE ALSO EARNED AN HONORED DOCK RAT FROM THE UNIVERSITY OF ARKANSAS AND INDUCTION IN THE ARKANSAS BLACK HALL OF FAME. WE ARE HONORED TO HAVE DR. JAMES HILLDRETH JOIN US TODAY. >> AS YOU HEARD I WAS PART OF THE PRESIDENT BIDEN EQUITY TASK FORCE AND SPENT A LONG TIME DISCUSSING LONG COVID AND THE MINE MINE ORTIZED COMMUNITIES. WE THING LONG COVID-19 WILL DISPROPORTIONATELY AFFECT COMMUNITIES OF COLOR AND FROM MY PERSPECTIVE AS A PHYSICIAN SCIENTIST WE KNOW THERE'S A LONG HISTORY FOR WOMEN AND MINORITIES WHEN THEY PRESENT WITH CONDITIONS NOT READY DIAGNOSED BY OBJECTIVE MEASURES SUCH AS TESTS OR PROCEDURES. OFTEN TIMES THEY'RE NOT TAKEN VERY SERIOUSLY BY THE PROVIDERS AND CHRONIC FATIGUE SYNDROME IS AN EXAMPLE OF THAT. AS YOU HEARD FROM MY COLLEAGUE, LONG COVID ENCOMPASSES CONDITIONS THAT IMPACT MULTIPLE SYSTEMS IN OUR BODIES WHICH MEANS TEAMS OF INVESTIGATORS AND PHYSICIANS ACROSS MULTIPLE SPECIALTIES AND VIROLOGISTS AND PULMONOLOGISTS WILL BE INVOLVED IN FINDING ANSWERS AND TAKING CARE OF PATIENTS. MINOR TIED COMMUNITIES WON'T HAVE ACCESS TO SPECIALISTS. IT'S VERY IMPORTANT AND THIS IS ONE OF THE RECOMMENDATIONS THAT CAME FROM THE TASK FORCE THAT WE MAKE SURE UNINSURED PERSONS IN COUNTRY HAVE ACCESS TO THE TREATMENT THEY'LL NEED AND THE APPROPRIATE DISABILITY CONSIDERATIONS BE GIVEN TO THOSE INDIVIDUALS TO MAKE SURE THE IMPACT ON LONG COVID IS NOT A DISPROPORTIONATE BURDEN ON THEM. THOSE ARE JUST A FEW OF THE THINGS WE TALKED ABOUT AND RECOMMENDED IN OUR REPORT TO THE PRESIDENT. WE INVITE YOU TO GO TO THE WEBSITE THERE AND LOOK AT THE REPORT AND RECOMMENDATIONS WE MADE. TURN ON YOUR VIDEO BEFORE YOU ASK YOUR QUESTION IF YOU'D LIKE TO BE SEEN BY THE COMMUNITY AND PLEASE INTRODUCE YOURSELF BY NAME AND TELL US WHAT ORGANIZATION YOU ARE FROM. IN OTHER WORDS TO MAKE SURE AS MANY VOICES CAN BE HEARD AS POSSIBLE, WE ASK YOU MAKE ONLY ONE COMMENT OR ASK ONLY ONE QUESTION AND LIMIT YOUR TIME TO TWO MINUTES AND THAT WAY ALL OF US CAN TAKE PART OF THIS VERY IMPORTANT CONVERSATION AND WAIT TO UNMUTE. WE CAME UP WITH QUESTIONS TO ORGANIZATION OUR CONVERSATION TODAY. THE FIRST ONE IS REALLY IMPORTANT. IT RELATES TO OUR PERCEPTIONS OF THIS. THE QUESTION IS WHAT IS YOUR PERCEPTION OF THE LEVEL OF AWARENESS AROUND LONG COVID AND ITS SYMPTOMS IN YOUR COMMUNITY? WE ALL KNOW THAT AS WE TALKED ABOUT BEFORE, MANY PEOPLE DON'T RECOGNIZE LONG COVID FOR WHAT IT IS. THERE'S A GREAT NEED TO MAKE SURE WE HAVE AN UNDERSTANDING OF THE LEVEL OF UNDERSTANDING FOR OUR COMMUNITIES ABOUT THIS. AND SOME OF THE THINGS WE MIGHT ASK AS PART OF THAT QUESTION IS ARE THERE SPECIFIC GROUPS OR INDIVIDUALS THAT WE MIGHT FOCUS ON AND MIGHT WANT TO REACH AS WE DO THIS WORK? AND WHAT HAVE PEOPLE HEARD ABOUT RECOVER AND LONG COVID? AND RECOGNIZING ALL OF US MAY NOT RECOGNIZE THE LEVELS AND SYMPTOMS OF LONG COVID, WHAT HAVE YOU HEARD IN YOUR COMMUNITY PEOPLE TALK ABOUT UP GETTING OVER COVID. A LOT OF TIMES THERE'S LONG COVID HAPPENING BUT PEOPLE AREN'T AWARE THERE'S A NAME FOR THIS PHENOMENA. BASED ON ALL THAT AND YOUR KNOWLEDGE OF WHAT IS AH HAPPENING, WHAT DO YOU THINK ARE THE BEST MODALITIES FOR GETTING THE WORD OUT DELIVERING INFORMATION ABOUT LONG COVID FOR THE COMMUNITIES YOU'RE HEAR REPRESENTING. WITH THAT I'LL OPEN IT UP FOR COMMENTS AND QUESTIONS. YOU CAN ENTER YOUR QUESTION IN THE CHAT OR -- OH, I SEE. DR. MUNOZ, I BELIEVE, FROM NIH. >> YES. I'M ONE OF THE FOUR CO-CHAIRS OF THE STEERING COMMITTEE OF NIH SEAL. DO WE HAVE AN ESTIMATES OF THE PEOPLE WHO SUFFER FROM COVID WHO GO ON TO SUFFER FROM LONG COVID? >> MY UNDERSTANDING IS THAT SOMEWHERE BETWEEN 20% AND 30% OF INDIVIDUALS WHO GET COVID-19 WILL GO ON TO SUFFER FROM LONG COVID. I BELIEVE ONE OF MY COLLEAGUES MAY HAVE ADDITIONAL INFORMATION TO SHARE SO I WELCOME THEM TO RESPOND AS WELL. >> THANK YOU. >> ESTIMATES FOR THE INCIDENTS AND PREVALENCE OF LONG COVID, MANY STUDIES FALL AROUND THE RANGE DR. HILLDRETH MENTIONED. IT'S IMPORTANT TO ALSO RECOGNIZE WIDELY RANGING IN THE LITERATURE AND IT DEPENDS ON SPECIFICALLY WHAT THE STUDIES ARE LOOKING AT. WHICH SYMPTOMS, WHICH AFFECTS AND IN WHICH POPULATION. SOME STUDIES HAVE SHOWN PEOPLE WITH MORE SEVERE DISEASE SUCH AS HOSPITALIZED PATIENTS HAVE A GREATER BURDEN OF LINGERING AFFECTS SO IT'S VERY VARIABLE. >> I SEE WANDA ALTMAN. PLEASE. >> I HAD A COMMENT NOT A QUESTION SO MUCH. I WAS STRUCK WITH COVID IN JULY 2020 AND ANYTHING LONG COVID AND LONG HAULERS UNTIL ONE NIGHT I WAS HAVING INSOMNIA AND TURNED THE TV TO FULL-COURT PRESS AND THERE WAS A YOUNG WOMAN ON THERE SPEAKING TO LONG HAULERS AND THE WORK SHE HAD DONE AROUND LONG COVID AND TALKED ABOUT THE SYMPTOMS THAT I EXPERIENCE NOW. I WOULD SAY IN THE COMMUNITY THERE'S NOT A HIGH LEVEL OF AWARENESS AROUND LONG COVID AND ITS SYMPTOMS. I'VE SPOKEN WITH PERSONS WHO SAY I STILL HAVE THIS COUGH. I CAN'T GET RID OF THIS COUGH. I'M STILL NOT ABLE TO TASTE OR SMELL BUT DONT HAVE AN IDEA AND I COULDN'T TELL THEM WHAT IT WAS OTHER THAN SOMETHING THAT LINGERS AROUND AFTER COVID BECAUSE I WAS NOT AWARE LONG COVID UNTIL I WAS INVITED. I WAS AWARE OF LONG COVID WHEN I TURNED TO THE TV PROGRAM BUT RECOVER I WAS ONLY AWARE OF IT WHEN I WAS INVITED TO PARTICIPATE IN THE LISTENING SESSION. >> THANK YOU. YOU RAISE AN IMPORTANT POINT WHICH IS HOW TO GET THE WORD OUT TO COMMUNITIES NOT AWARE OF THIS PHENOMENON THAT'S A REAL THING WE NEED TO FOCUS ON SO YOUR POINT IS DEFINITELY WELL TAKEN. I SEE DR. HECKMAN AND DR. ECHO -HAWK. >> DID WE LOSE DR. HECKMAN? ABIGAIL, WOULD YOU LIKE TO GO WHILE WE GET HIM BACK? >> SURE, THANK YOU SO MUCH. ABIGAIL ECHO-HAWK THE ONLY CENTER FOCUSSING ON URBAN DWELLING NATIVE AMERICANS AND ALASKAN NATIVES IN SEATTLE WASHINGTON SERVING AMERICAN INDIAN AND ALASKAN NATIVES. I WANT TO ADDRESS MY CONCERNS AROUND THE METHODS OF THE STUDY THAT RAISED SOME AWARENESS FOR ME OF THINKING ABOUT HOW THE STUDY MAY HAVE SOME LIMITATIONS PARTICULARLY WHEN IT LOOK AT THE INFORMATION RELATED TO AMERICAN INDIAN AND ALASKAN NATIVES AND WE FOUND THERE WAS A LACK OF DATA AS A DIRECT RESULT WE FOUND NON-COLLECTION OF RACE AND ETHNICITY OF AMERICAN INDIANS AND OTHER BIPOC COMMUNITIES AND WHEN YOU LOOK AT THE EHR RECORDS AND TRYING TO TRACK WHETHER OR NOT THEY HAD A COVID INFECTION AND THEN LONG COVID AFTER THAT SAY DIRECT RESULT OF THAT, THOSE LIMITATIONS IN THE DATA ARE GOING TO SKEW AND NOT PROPERLY REPRESENT THE AMERICAN INDIAN AND ALASKAN NATIVE EXPERIENCE AND THERE'S WORK TO BE DONE ON THE MISCLASSIFICATION AND POSSIBLE LINKAGES IN ORDER TO MAKE THE STUDIES RELEVANT TO A POPULATION THAT'S BEEN ONE OF THE MOST IMPACTED BY COVID-19. IN ADDITION THE RECRUITMENT STRATEGY MAY BE USING HOSPITAL RECORDS IN WHICH TO SEND LETTERS OUT TO FOLKS TO ENGAGE OR HOWEVER YOU'RE LOOKING TO ENGAGE PARTICIPANTS WE FIND WHEN PEOPLE USE HOSPITAL RECORDS ALASKAN NATIVES OFTEN GO OFF RESERVATION LANDS AND WHEN YOU CONTACT THERE'S THE ABILITY TO LIMIT TO ENGAGE IN AND TO REGULATE ANY RESEARCH HAPPENING ON TRIBAL LAND SO I WOULD SUGGEST YOU LOOK AT YOUR METHODS TO ENSURE YOU'RE NOT IMPINGING ON TRIBAL SOVEREIGN TI AND ETHICAL RESEARCH. WE'RE STILL IN THE MIDST OF A CRISIS AND PEOPLE ARE TRYING TO OVERCOME THE CRISES AND HAVEN'T BEEN ABLE TO ENGAGE IN WHAT LONG COVID IMPACTS CAN LOOK LIKE BUT YET WITHIN MY OWN CLINIC POPULATION AND THE WORK WE DO AROUND THE NATION WE'RE SEEING LONG COVID AND WHEN OUR FOLKS GO INTO NON-INDIGENOUS HOSPITALS AND CLINICS, NOBODY'S BELIEVING THEM. WE'RE THE IMPACT OF IMPLICIT BIAS, RACISM AND PREJUDICE AND THE NON-BELIEF OF THOSE EXPERIENCING SYMPTOMS. ONE OF THE THINGS WE HAVE FOUND IS THAT THE MAINSTREAM STRATEGIES PARTICULARLY AROUND COVID VACCINATION AND INFORMATION AROUND COVID-19 SINCE THE BEGINNING OF THE PANDEMIC FROM THE MAINSTREAM PERSPECTIVE DID NOT REACH OUR COMMUNITY. MY ORGANIZATION DID THE ONLY SURVEY ON VACCINE HESITANCIES AND PERCEPTIONS AND FOUND THE OPPOSITE OF THE STRATEGY THAT WAS BEING USED BY MAINSTREAM STRATEGIES AROUND ENGAGING PEOPLE AND COVID-19 VACCINES WHEN YOU THINK OF THE BEST MODALITIES FOR COMMUNITY INFORMATION HAS TO BE COMMUNITY DRIVEN. THERE'S COMMUNITIES WHERE YOU NEED TO HAVE ONE UNIFIED MESSAGE AND HAS TO BE NOT ONLY ADAPTABLE BUT SOMETIMES JUST COMPLETELY DIFFERENT IN THE WAY THE INFORMATION HAS GATHERED. IT HAD TO BE DONE THROUGH TRUE COMMUNITY ENGAGEMENT FOR TRIBAL COMMUNITIES THAT MEANS IN ADDITION TO NATIONAL INDIGENOUS ORGANIZATIONS LIKE NATIONAL CONGRESS AND INDIAN HEALTH BOARD AND THE INDIAN HEALTH INSTITUTE AND MY OWN ORGANIZATION. WE'RE THE TRUSTED MESSENGERS WITHIN OUR COMMUNITY. SO THANK YOU. >> SORRY, ABIGAIL. I WANT TO POINT OUT ALL THOSE THINGS YOU RAISED AS CONCERNS WERE ADDRESSED IN THE HEALTH EQUITY TASK FORCE. DISAGGREGATED DATA IS IMPORTANT AND HOW TO GET THE BEST DATA TO FIND THE SOLUTIONS YOU NEED TO ALL THE POINTS YOU RAISED ARE VALID AND I WOULD INVITE YOU TO GET A COPY OF THE FULL REPORT BECAUSE I ASSURE YOU THOSE CONSIDERATIONS YOU RAISED WERE ALL WORK WE DID TO FIND RECOMMENDATIONS ON SOLUTIONS BUT THANK YOU AND THE TRUSTED MESSENGER PIECE IS CRITICAL AND I THINK THE FOLKS AT NIH AND HHS UNDERSTAND THAT SO THANK YOU VERY MUCH, ABIGAIL. DR. HECKMAN, YOU'RE BACK. GO AHEAD, PLEASE. >> CAN YOU HEAR IS THE >> YES. >> -- HEAR ME? >> YES. >> WONDERFUL. THANK YOU FOR ORGANIZING THIS AND TAKING INTO ACCOUNT EVERYBODY'S PERSPECTIVE AND TACKING THIS LARGE ISSUE. NOT TO FURTHER COMPLICATE IT BUT I'M KIND OF WORRIED ABOUT THE DIRECT AND INDIRECT CYCLES IF SOMEONE'S BIOLOGICAL SYSTEM IS INTERRUPTED IMPACTING ACCESS TO HEALTH SERVICES OR DISPROPORTIONATELY IMPACT OF DEATH IN HIGHER COMMUNITIES COULD LEAD TO TRAUMA AND CYCLE INTO DEPRESSION AND ANXIETY AND LESS BEING ABLE TO WORK OR BEING PHYSICALLY HEALTHY FURTHERING THE EQUITY GAP IN TERMS OF THE SOCIAL DETERMINATES OF HEALTH AND COME FROM THIS AS THE STUDY OF SOCIAL DETERMINATES OF HEALTH AND THE CLINICAL PSYCHOLOGIST. I GUESS I'M CURIOUS, IS THAT OUTSIDE THE SCOPE OF RECOVER BECAUSE IT'S NOT DIRECTLY THE BIOLOGICAL ASPECT OR THINKING ABOUT THE MULTI-LEVEL COMPLEX SYSTEMS WHICH PROVIDE THE FEEDBACK LOOPS THAT KEEP PART OF THE PROBLEM GOING OR NOT AND FURTHER THINKING THROUGH POTENTIAL BUFFERS THAT MIGHT BE DIFFER IN ADDITION TO THE DIFFERENTIAL PATHWAYS FOR THE DISEASE ITSELF. SIMILAR TO WHAT OTHERS HAVE MENTIONED HERE SO I WON'T GO IN GREATER DEPTH AND I'D BE REMISS TO NOT ALSO THINK THIS AS AN OPPORTUNITY TO ENHANCE CAPACITY BUILDING AND WORKFORCE DEVELOPMENT THROUGH UNIQUE PARTNERSHIPS AMONG HISTORICALLY MINORITY INSTITUTES AND THE PAIRING UP WILL ALLOW FOR THE STRONG ARE CONNECTION WITH THE COMMUNITY AND ALLOW FOR A MUCH MORE COMMUNITY-ENGAGED, HOLISTIC APPROACH MORE BROADLY. I'LL LEAVE IT THERE. THANK YOU. >> THANK YOU, DR. HECKMAN. CERTAINLY I KNOW FOR SURE BEHAVIORAL HEALTH AND BEHAVIORAL HEALTH CONSEQUENCES OF THIS IS WHAT THEY'RE LOOKING TO ADDRESS. I BELIEVE IT'S PART OF THE STRATEGY TO ADDRESS THE ASPECT. >> THANK YOU FOR THAT QUESTION, DR. HECKMAN. I'LL ASK WE CERTAINLY INCLUDED THE SOCIAL DETERMINATES OF HEALTH BECAUSE WE RECOGNIZE THIS IS BEYOND THE BIOLOGICAL MECHANISMS OF RECOVERY AND DEALING WITH LONG COVID. WE HAVE ADDRESSED THOSE ISSUES. THANK YOU FOR THAT QUESTION. NEXT QUESTION. >> THANK YOU FOR THE HELPFUL BRIEFING AND LIFT UP WHAT ABIGAIL SAID EARLIER ABOUT AMERICAN INDIANS AND I WAS TAKING COPIOUS NOTES. HAVE YOU LOOKED AT DATA DISAGGREGATION AND THE INDIVIDUALS AND CHILDREN WHO SUFFER FROM LONG COVID. I ASK THAT BECAUSE PART OF THE CONVERSATION ABOUT COMMUNITY REACH AND STRATEGIES AND TRUSTED NAVIGATORS AND PART OF UNDERSTANDING OUTREACH AND ACCESSIBILITY IS ALSO UNDERSTANDING THE DATA AND WHERE THERE MAY BE GAPS FALLING SHORT BOTH BECAUSE WE DON'T HAVE IT OR SOME OF MENTIONING OF RACES MISCLASSIFIED. CURIOUS IF THERE'S MORE INFORMATION ON THAT. I APOLOGIZE, I'M WITH THE CHILDREN'S DEFENSE FUND AND MY FANTASTIC COLLEAGUE ON THE CALL. >> SINCE THERE'S NOT A LEVEL OF AWARENESS OF LONG COVID AS A PHENOMENON AND CONDITION, I DO THINK THOSE WHO PRESENTED THEMSELVES WITH THIS DISORDER PREDOMINANTLY NON-MINORITY WE HAVE TO RAISE AWARENESS IN THE MINORITY COMMUNITY AND FOR PEOPLE TO COME FORWARD. I'LL LET MY COLLEAGUES SPEAK TO THAT, DR. WILLIAMS AND DR. LERNER. >> YEAH, I AGREE. THERE ARE REAL GAPS IN TO THE DATA WE HAVE ABOUT LONG COVID FOR MANY REASONS AND ROBUST DATA'S NEEDED AND RECOVER IS HOPING TO FILL SOME OF THOSE GAPS. >> WE HAVE JOHN KALEEKAL. TAKE IT AWAY. >> GOOD AFTERNOON. I'M PEDRO MARTINEZ AND REPRESENTING UNIDOS U.S. FOR SENIOR PREPAREDNESS AND RESPONSE AND I APPRECIATE THE OPPORTUNITY TO BRING OUR PERSPECTIVE. THE LONG AND SHORT OF IT HERE IS THAT AS WE'VE BEEN DISCUSSING, THERE IS LOW AWARENESS WITHIN THE LATINO COMMUNITY IN REGARDS TO WHAT LONG COVID IS. I THINK A LOT OF THAT STEMS FROM THE EARLIER MESSAGING WITHIN THE PANDEMIC THIS COVID-19 VIRUS WAS NOT ANYMORE SEVERE THAN THE FLU. I THINK FOLKS HAD A MISUNDERSTANDING FROM THE BEGINNING AND THE SCIENCE OF COURSE WASN'T THERE AT THAT TIME. THAT BEING SAID, THE FOLKS WHO POTENTIALLY HAVE BEEN IMPACTED THE MOST WOULD BE ESSENTIAL WORKERS. THOSE WHO HAVE BEEN OUT WORKING IN THE FIELDS, WORKING IN SERVICE INDUSTRY JOBS. THOSE WHO ARE IN THE POULTRY PROCESSING PLANT AND SO FORTH THAT MAY BE THOSE WHO COULD BE MOST IMPACTED BY LONG COVID BUT HOWEVER, THEY MAY NOT EVEN BE AWARE OF LONG COVID AND WHERE THE JARGON COMES INTO PLAY, WHAT IS LONG COVID AND WHAT'S THAT MEAN AND SEQUELAE, MOST FOLKS DON'T UNDERSTAND WHERE THAT MEANS. I COME FROM A VIOLENCE AND PREVENTION BACKGROUND SO I'M AWARE BUT IT DOESN'T MEAN WHAT THE GENERAL PUBLIC IS. FINDING THE WAYS TO COMMUNICATE WHAT LONG COVID IS AND WHAT THE SYMPTOMS ARE COULD BE HELPFUL. IN ADDITION TO THOSE WHO POTENTIALLY MIGHT BE IDENTIFIED IN HAVING LONG COVID ARE THOSE WHO HAVE ACCESS TO HEALTH CARE DISCOVERY AND HAVE HEALTH CARE INSURANCE AND HAVE PERHAPS DOING WELLNESS CHECKUPS ON A YEARLY BASIS. IF THOSE INDIVIDUALS DO NOT HAVE ACCESS TO HEALTH CARE OR LOW ACCESS TO HEALTH CARE THEY MAY NOT HAVE THE ABILITY TO EVEN KNOW THIS IS AN EXTENDED COST OR MENTAL HEALTH ISSUES OR CHALLENGES OR WHATEVER THE LONG COVID SYMPTOMS MIGHT BE ARE RELATED TO LONG COVID BUT MAY THINK IT'S RELATED TO SOMETHING ELSE. I THINK THOSE ARE POINTS I WANTED TO MAKE AND HOW CAN WE BEST DELIVERY THIS INFORMATION. ONCE AGAIN REEMPHASIZE TRUSTED COMMUNITY MESSENGERS ARE GOING TO BE THE BEST WAY TO BE ABLE TO ADDRESS LONG COVID AND TO BRING THE POINTS FORWARD TO THE COMMUNITY FOR THEIR AWARENESS AND TO ADDRESS MISINFORMATION AND A NUMBER OF OTHER THREATS TO THAT WILL BE COMING DOWN THE ROAD. ONCE AGAIN I APPRECIATE THE OPPORTUNITY TO CONTRIBUTE AND LOOKING FORWARD TO PROVIDING MORE FEEDBACK. >> THANK YOU. >> NEXT WE HAVE JOHN. >> THIS IS JOHN KALEEKAL REPRESENTING THE ASIAN PACIFIC ISLANDER POPULATION AND WANTED TO ADDRESS MODALITIES FOR DELIVERING INFORMATION. I'M THINKING ABOUT YESTERDAY WE JUST HOSTED A WEBINAR WHERE WE DISCUSSED VACCINE EQUITY AMONGST THE API COMMUNITY AND FOCUSSED IN ON TWO ORGANIZATIONS AND ONE OF THE BIG TAKEAWAYS I'M THINKING ABOUT IS THERE'S A LOT OF DISPARITIES WITHIN THE BROAD COMMUNITY AMONGST OUR SOUTHEAST ASIAN COMMUNITY AND HAWAIIAN AND PACIFIC ISLANDER COMMUNITIES AND WHAT THEY HAD RECOMMENDED WAS -- AND I DON'T THINK THIS IS ANYTHING GROUNDBREAKING BUT TAILORING TO THESE COMMUNITIES DEVELOPING RESOURCES IN MULTIPLE LANGUAGES, MAKING SURE THEY'RE SUFFICIENTLY AND ADEQUATELY TRANSLATE AND COMPREHENSIBLE IN THOSE LANGUAGES. AND THEN ONE OF OUR COLLEAGUES SHARED IF YOU, FOR EXAMPLE, SHE WORKS WITH THE FILIPINO COMMUNITY IN HAWAI'I AND SAID IF YOU WANT TO REACH FILIPINOS YOU HAVE TO SEND FILIPINOS AND WORKING WITH THOSE COMMUNITIES TO FURTHER THE EFFORTS OF THIS PROGRAM. I THINK THAT APPLIES WITH VACCINES AND ALSO WHAT YOU'RE TRYING TO DO WITH INFORMATION WITH LONG COVID AND REACHING THESE COMMUNITIES. AGAIN, I DON'T THINK IT'S GROUNDBREAKING BUT WORTH SHARING WITH THE TEAM. >> THERE'S A FEW QUESTIONS IN THE CHAT WE CAN TURN TO. ONE IS FROM TERESA. SHE WRITES, ARE THERE SIGNIFICANT DIFFERENCES IN THE NUMBER OF INSTANCES OF LONG COVERED BASED ON WHEN PEOPLE INITIALLY CAUGHT COVID? >> I HAVEN'T SEEN EVIDENCE WITH LONG COVID BUT DEPENDING ON YOUR EXPERIENCE YOU'RE MORE LIKELY OR LESS LIKELY TO GET LONG COVID. >> YOU'RE UNDERSTANDING IS THE SAME AS MINE. THAT'S ANOTHER KNOWLEDGE GAP AND, YES, THAT'S A GAP IN OUR DATA. >> I WOULD JUST ADD MANY OF THE PATIENT REPRESENTATIVES WE WERE WORKING WITH WERE DIAGNOSED WITH COVID IN EARLY 2021. THERE SEEMS TO BE AN ASSOCIATION WITH THE EARLY VARIANTS BUT IT'S STILL UNKNOWN. >> THE NEXT QUESTION OR COMMENT IS FROM EDWARD. IT RELATES TO WHETHER OR NOT PERSONS WHO HAD COVID-19 THAT WERE NOT DIAGNOSED BY PCR TEST ENTERED INTO EHR, WHAT IS THE WAY TO DEAL WITH THAT. AS YOU PROBABLY KNOW OR HEARD OR READ, FOR EVERY PCR DIAGNOSED CASE OF COVID THERE'S OTHERS THAT OCCURRED THAT WERE NOT DIAGNOSED. IN FACT, ONE OF THE ISSUES WE HAVE WITH THE AT-HOME ANTIGEN TESTING KIT IS THOSE CASES ARE NOT BEING REPORTED TO THE CDC NECESSARILY SO IT'S ANOTHER MAJOR CHALLENGE WE HAVE KNOWING THE FULL SCOPE OF THE PROBLEM IS SOMEWHAT CHALLENGING GIVEN THE POINT YOU JUST RAISED. ONE OF THE RECOMMENDATIONS WE MADE IN OUR REPORT OUR RECOMMENDATIONS TO THE PRESIDENT FROM THE HEALTH EQUITY TASK FORCE IS WHETHER OR NOT THE CASE WAS DIAGNOSED WITH A PCR TEST OR NOT AND SHOULD BE ENTITLED TO TREATMENT AND YOU RAISE A GOOD POINT THERE'S A LOT OF COVID-19 CASES NOT FORMALLY DIAGNOSED WITH A PCR TEST. I DON'T KNOW IF THERE'S A COMMENT ON THAT. >> EXCELLENT POINT. INDIVIDUALS WHO GO THROUGH THESE PROTOCOLS WILL BE TESTED BUT THERE'S ALSO A LIST OF SYMPTOMS THAT ARE ACCESSED AS WELL. >> OKAY. AND THE NEXT ONE I'LL READ IT AND INVITE MY COLLEAGUES TO COMMENT. THIS IS FROM DR. HECKMAN. CONTINUOUS STREAMS WITH STRONG POTENTIAL FOR CLINICAL VALIDITY AND EXTERNAL VALIDITY WITH ACCEPTABLE ADHERENCE WILL BE HIGHLY IMPORTANT AND MINIMALLY INVASIVE SUCH AS -- I CAN'T READ THAT. STRONGLY PREDICTIVE OF COVID-19. POSITIVE TEST THREE DAYS IN ADVANCE, MORBIDITY AND OTHER MEASURES THAT CAN BE COLLECT. I THINK WHAT YOU'RE REFERRING TO IS THE IMPORTANCE OF WEARABLES AND DR. LERNER MENTIONED THAT IS GOING TO BE AN IMPORTANT COMPONENT OF THIS WORK THAT'S GOING TO BE DONE. YOUR POINT IS DEFINITELY WELL TAKEN. THERE'S ONE MORE IN THE CHAT. HOW DOES THIS MIRROR OTHER CHRONIC CONDITIONS MANAGEMENT VERSUS OR DIVERGENCE AND HOW CAN IT BE COMPARED ACROSS THE FRAMEWORK, ATTACHED WORK LOAD CAPACITY MODEL. I'M NOT FAMILIAR WITH THAT MODEL BUT DR. WILLIAMS MIGHT BE. DO YOU WANT TO COMMENT ON THAT? >> I'M NOT SURE. DO THEY WANT TO ELABORATE ON THIS? >> I WAS JUST THROWING OUT COMMENTS IF YOU YOU HAVE A STARTED FRAMEWORK YOU SEE THE REFERENCE POINT TO A BASELINE. THERE'S LOTS OF DIFFERENT FRAME WORKS OUT THERE SO IT'S ONE EXAMPLE. >> WE CERTAINLY CAN COME BACK TO THIS QUESTION BUT TO KEEP OUR CONVERSATION MOVING ALONG, CAN WE GET TO THE NEXT SLIDE, PLEASE. WHAT YOUR COMMUNITY'S MOST PRESSING NEEDS WHEN IT COMES TO COMMUNICATION AND INFORMATION REGARDING LONG COVID? WHAT ARE THE AVERAGE APPROACHES AND INTERVENTIONS YOU FEEL WOULD BE MOST EFFECTIVE IN YOUR COMMUNITIES AND HOW MIGHT RECOVER PARTNER WITH OTHER ORGANIZATIONS LIKE YOURS TO BETTER UNDERSTAND THE IMPACT OF LONG COVID IN YOUR COMMUNITIES? AND BETTER MEET YOUR PRESSING RELATED NEEDS. WE'LL OPEN THAT UP FOR COMMENT AND DISCUSSION. WHAT ARE THE MOST PRESSING NEEDS WHEN IT COMES TO COMMUNICATION AND GETTING INFORMATION TO THOSE WHO NEED TO HAVE THAT INFORMATION? YOU CAN RAISE YOUR QUESTION IN THE CHAT AND WE'LL TAKE IT FROM THERE. I WANT TO MAKE A POINT IN OUR TASK FORCE WE FOCUSSED ON SOMETHING MENTIONED BY A POINT THAT THE MATERIALS PRODUCED BE CULTURALLY EFFECTIVE I WANT TO ACKNOWLEDGE THAT'S SOMETHING WE SPENT A LOT OF TIME ON. TER AUTO -- TERESA. >> I'M FOUNDER OF BLACK COVID-19 SURVIVORS SPORT GROUP. IN RELATION TO THE BEST WAY TO GET INFORMATION OUT, ONE THING I HAVE SEEN IS THAT THERE'S A DISTRUST IN GENERAL FROM THE GOVERNMENT AND IF THERE COULD BE LIKE A CACHE OF INFORMATION OF GRAPHICS, THINGS THAT ARE APPROPRIATE FOR A VARIETY OF AGES FOR COMMUNITY MEMBERS LIKE MYSELF AND OTHERS ON THE GRASSROOTS LEVEL TO PULL FROM THE CACHE FOR DISSEMINATION WOULD REACH PEOPLE THROUGH SOCIAL MEDIA AND THAT SEEMS TO BE THE BIGGEST DRIVER OF INFORMATION AS WELL AS MISINFORMATION. WHEN IT COMES TO LONG COVID, I'M SEEING SOME THINGS WHERE A LOT OF PEOPLE MAY HAVE LONG COVID BUT ATTRIBUTING THEIR PROBLEMS TO THE VACCINE. THAT'S A CONTINUATION OF THE DISTRUST FACTOR AND MISINFORMATION AND RELUCTANCE FOR PEOPLE IN THE BLACK COMMUNITY TO GET THEIR VACCINATION AND/OR BOOSTERS. >> SO IF YOU DON'T MIND, TERESA, COULD YOU ELABORATE ON THE LAST POINT OF CONFLATING LONG COVID WITH THE CONSEQUENCES OF GETTING THE VACCINE? I THINK THAT'S AN IMPORTANT THING. >> SURE. FOR THOSE WHO HAD BREAKTHROUGH CASES THEY'RE NOT ALWAYS AWARE LONG COVID EXISTS. SO ONCE THEY HAVE GOTTEN THE VACCINE, SECOND SHOT OR BOOST ARE BECOME MORE CONSCIOUS AND AWARE OF WHAT THEY'RE OWN AILMENTS AND CONDITIONS ARE AND AUTOMATIC TO ATTRIBUTING TO HAVING RECEIVE THE SECOND VAX OR BOOSTER. AND SO FROM WHAT I'M SEEING, FROM CONVERSATIONS AND SO FORTH IN MY GROUP, THERE'S A STRONG POSSIBILITY A LOT OF THOSE ATTRIBUTES ARE DUE TO LONG COVID AND NOT BECAUSE THEY'RE SUFFERING SIDE EFFECTS BUT THAT IS A GROWING CONCERN. PEOPLE WHO HAVE BEEN VACCINATED ARE OFTEN NOW NOT WANTING TO HAVE THE BOOSTER. THAT'S BECAUSE OF THE SIDE EFFECTS WHICH IN REALITY JUST MAY BE LONG COVID SO MORE INFORMATION ABOUT LONG COVID NEEDS TO BE OUT SO PEOPLE WILL DIFFERENTIATE SIDE EFFECTS VERSUS PASC. >> THANK YOU. THOSE ARE EXCELLENT POINTS WE NEED TO CONSIDER SO I APPRECIATE YOUR THOUGHTS ON THAT. I THINK I SEE ABIGAIL'S HAND UP. >> THIS SAY GREAT QUESTION AND ONE THAT'S IMPORTANT. WHEN I THINK ABOUT THE AMERICAN INDIAN AND ALASKAN NATIVE COMMUNITY AND THERE'S BEEN FOCUS ON INTERNET ACCESS AND WE HAVE AN INCREDIBLE DIGITAL DIVIDE. WE FOUND THE MOST EFFECTIVE WAY WAS TO SEND LETTERS FROM A TRUSTED TRIBAL ORGANIZATION VERSUS EVEN A PAMPHLET AND SIMPLY DIDN'T HAVE ACCESS TO INTERNET. AS A RESULT OF THAT THEY WEREN'T GETTING THE INFORMATION THEY NEEDED IN ORDER TO PREVENT, TREAT AND GET VACCINATED AGAINST COVID. DEFINITELY RECOGNIZE THERE'S A DIGITAL DIVIDE AND MAKING SURE THAT'S ADDRESSED WHEN LOOKING AT COMMUNICATION. WHEN WE THINK OF OUTREACH APPROACHES AND ANY KINDS OF INTERVENTIONS, THEY NEED TO BE COMMUNITY DRIVEN AND INFORMED AND OPERATED. WHICH MEANS THE ALLOCATION OF RESOURCES NEEDS TO GO TO THE COMMUNITIES. WHAT WE FOUND IS THAT IT REALLY TOOK KEY INTERVIEWS AND FOCUS GROUPS ACROSS THE COUNTRY ENGAGING WITH THE COMMUNITIES AND AGAIN RECOGNIZING SIMPLY BECAUSE WE'RE AMERICAN INDIANS AND ALASKAN NATIVES THAT WE LIVE IN URBAN ORGANIZATIONS BUT OUR HEALTH DISPARITIES REMAIN THOSE IN LINE OF OUR BROTHERS AND SISTERS ON THE RESERVATIONS SO THERE'S ALSO A GAP IN INFORMATION SO TARGETED INFORMATION AND RESOURCE AND FUNDING ARE ESSENTIAL. THE OTHER THING THAT WE FOUND THAT WORKS WELL AND CONTINUALLY SEARCHING FUNDING FOR IS PEER-TO-PEER. TRAINING, OUTREACH WORKERS TRAINING YOUR SISTER AND AUNTIE TO TALK TO COMMUNITY MEMBERS. THAT'S WHO THEY BELIEVE. THERE'S NO TRUSTWORTHINESS IN THE FEDERAL GOVERNMENT GOVERNMENT AND WHEN THEY SAY HHS AT THE BOTTOM OR CDC NOBODY REALLY CARES. THAT HAS BEEN A KEY GAP AND WE NEED TO BE ABLE TO WORK WITH COMMUNITY TRUSTWORTHY ORGANIZATIONS AND BEGIN TO BUILD THE TRUSTWORTHINESS OF OUR FEDERAL SCIENTIFIC PARTNERS SO WE BEGIN TO DO THAT WORK TO HEAL SOME OF THE THINGS AFFECTING WHETHER OR NOT INFORMATION GETS TO US. >> THANK YOU VERY IMPORTANT POINTS YOU RAISED. I APPRECIATE THAT. >> AND THINKING ABOUT THE MODALITIES IS IMPORTANT SO EVEN AMONGST SOCIAL MEDIA THERE'S DISPROPORTIONATE USE OF PLATFORM DIFFERENT MINORITY POPULATIONS USE RELATIVE TO OTHERS. MAYBE YOU WANT TO BE TARGETING THROUGH INSTAGRAM OR TWITTER VERSUS OTHER ASPECTS AND MAYBE WANT TO THINK ABOUT A DRIP CAMPAIGN THAT CREATES MULTIPLE AVENUES THROUGH WHICH MESSAGES ARE COMING TO PEOPLE AND MAYBE THROUGH DIFFERENT FORMS AND THE OTHER THING THAT'S IMPORTANT IS THINKING ABOUT THIS ITERATIVELY AND THROUGH BEHAVIORAL ECONOMIC FRAMEWORK. WHY WOULD SOMEBODY WANT TO COME BACK FOR MORE INFORMATION IS BECAUSE THEY'RE GETTING SOMETHING POSITIVE AND REWARDING TO INCENTIVIZE WANTING TO FURTHER ENGAGE AS WELL. AGAIN, COMING FROM THE PERSPECTIVE IF WE ASK WHAT THEY'RE NEEDS AND PRIORITIES ARE, WE COULD START PROVIDING SOME OF THOSE WHICH THEN NOW ARE CREATING A POSITIVE RELATIONSHIP WHICH CAN FURTHER ENHANCE THAT TRUST AND BUILD MOMENTUM TOWARDS LONGER TOMORROW ENGAGEMENT AND THAT CAN EXTEND TO OTHER HATH BEHAVIORS. I'LL LEAVE IT THERE. THANK YOU. >> FOR THOSE WHO ARE NOT BOOMERS, WHAT IS A DRIP CAMPAIGN. >> YOU BUILD RESPONSE AND YOU PROBABLY GET THIS MANY THROUGH E-MAILS WHERE THEY'LL SAY GET READY FOR THE UNVEIL BUT YOU DON'T KNOW WHAT THE UNVEIL IS YET AND GIVE MORE INFORMATION AND IT KEEPS YOU HOOKED IN BUT IT'S ABOUT THE FREQUENCY SO IT'S ALWAYS IN THE BACK OF YOUR MIND YOU WANT TO BE ENGAGED WITH THE RECOVER INITIATIVE BUT DON'T KNOW WHY BECAUSE IT'S VERY SUBTLE. IT'S NUDGING, ESSENTIALLY AND MARKETING. >> THANK YOU. >> I'M WITH THE CHILDREN'S DEFENSE FUND SOUTHERN REGIONAL OFFICE AND DO WORK IN RURAL COMMUNITIES ACROSS ALABAMA, GEORGIA AND MISSISSIPPI WITH A NETWORK OF BLACK WOMEN AND GIRLS. WE HAVE AND IDENTIFYING WHO THOSE ARE WITHIN THE COMMUNITY TO PUT INFORMATION THROUGH. BLACK WOMEN AND MOTHERS OF ANY KIND ARE LISTENED TO WHEN IT COMES TO THINGS ABOUT HEALTH. BLACK WOMEN AND MOTHERS ARE GENERALLY IN CHARGE OF HEALTH CARE ARRANGEMENTS AROUND THEIR FAMILY. WE WOULD LIKE TO SEE GREATER AND REACHING DEEPER INTO COMMUNITIES AND THINK ABOUT THE INFRASTRUCTURE THAT'S BEEN PUT IN COMMUNITIES AROUND HEALTH CARE. THOSE ORGANIZATIONS THAT WERE PUT IN PLACE TO DO OUTREACH AND NAVIGATION FOR THE ACA ALREADY HAVE CONTACTS AND HAVE AND ARE RECOGNIZED FOR BEING CONNECTED TO HEALTH CARE DELIVERY. THEN FINALLY AND AS WE THINK OF LONG COVID AND ALL THE OTHER THINGS WE'RE TALKING ABOUT WE'RE LOOKING AT THIS TOWARDS LONG-TERM STRATEGIES FOR HOW WE DEVELOP PUBLIC HEALTH SYSTEMS. OBVIOUSLY OUR PUBLIC HEALTH SYSTEM NEEDS A LOT AND NEEDS TO BE CONNECTED MORE INTO COMMUNITIES. THOSE ARE COMMENTS I HAVE. >> THANK YOU. I WANT TO RAISE A POINT I SEE IN THE CHAT I THINK IS REALLY GOOD. WITH THE ORGANIZATION ABC POINTS OUT AND WANTS TO KNOW WILL THE INITIATIVE TAKE INTO ACCOUNT A GLOBAL PERSPECTIVE THAT IS HOW WILL DATA AND INFORMATION FROM OTHER COUNTRIES BE INCORPORATED INTO THIS PROJECT? I WOULD INVITE DR. LERNER AND WILLIAMS TO SPEAK ON THIS AND THANK YOU FOR THAT QUESTION. >> THANKS VERY MUCH FOR THAT QUESTION AND IT'S A REALLY IMPORTANT CONSIDERATION. WHILE THE RECOVER INITIATIVE SITES ARE ACROSS ALL 50 STATES THE INITIATIVE IS DESIGNED TO BE ADAPTABLE AND NIMBLE AS WE LEARN MORE ABOUT LONG COVID AND PASC AND OF COURSE THAT MEANS DATA FROM AROUND THE WORLD. AND AS THE SCIENCE EVOLVES SO WILL THE RECOVER INITIATIVE. >> THANK YOU ONCE AGAIN. I'D LIKE TO PROVIDE COMMENTS AND WHAT COMES TO MIND IS THE APPROACHES IS A CHALLENGE IN THE LATINO COMMUNITY AND COMMUNITIES OF COLOR IS LITERACY ISSUES AND ASIDE FROM LITERACY IT'S HEALTH LITERACY, THE LACK OF UNDERSTANDING OF HOW VIRUSES SPREAD, SYMPTOMS TO BE LOOKING OUT FOR AND HOW VACCINES WORK AND WHAT'S A VACCINE VERSUS THE COVERED SYMPTOM AND THE HEALTH LITERACY PIECE IS A WAY TO ELEVATE OUR COMMUNITY UNDERSTANDING OF HOW OUR BODIES WORK AND DON'T WORK TO COMBAT THE MISINFORMATION THAT IS OUT THERE THAT SOUNDS RIDICULOUS BECAUSE WE ALL COME FROM A BACKGROUND WHERE WE HAVE BASELINE UNDERSTANDINGS OF HOW OUR BODIES WORK. I BELIEVE A WAY TO GET AROUND THAT IS TO USE SIMPLIFIED TEXT AND USING PICTURES VERSUS USING TEXT. I LOVE THE IDEA OF THE PAM IN THE AND DOING THE MAILINGS AND SO FORTH AND THE DIGITAL DIVIDE IS REAL DEPENDING ON WHAT YOUR ZIP CODE IS. I WANTED TO PROVIDE THAT FEEDBACK. IN TERMS OF WHICH PARTNER ORGANIZATIONS TO CONSIDER, WHAT COMES TO MIND IS OUR COMMUNITY HEALTH WORKERS, THOSE FOLKS WHO ARE ON THE GROUND, TRUSTED MESSENGERS WORKING WITH THE COMMUNITY FOR YEARS AND DECADES. THOSE ARE THE INDIVIDUALS THAT WE COULD PROVIDE THOSE PAMPHLETS TO OR PUBLIC HEALTH NURSES ALSO IN THE RURAL COMMUNITIES WHO ARE THE FRONT LINE PUBLIC HEALTH WORKERS WHERE THERE IS NO HEALTH DEPARTMENT BECAUSE THOSE RURAL COMMUNITY SO SMALL. AND THE WELLNESS VISITS FOR PREGNANT WOMEN. THERE'S ALSO A LOT OF WOMEN WHO ARE PREGNANT AND THERE'S A LOT OF MISINFORMATION ABOUT COVID AND CDC JUST RELEASED A STUDY OF IMPACT OF COVID OF PREGNANT WOMEN AND INFANTS AND GOING BACK TO WHAT PARTNER ORGANIZATIONS I WOULD SAY THE NATIONAL ASSOCIATION OF HEALTH WORKERS AND THE NATIONAL HISPANIC MEDICAL ASSOCIATION AND NATIONAL ALLIANCE OF HISPANIC HEALTH. THESE ARE A COUPLE PARTNERING ORGANIZATIONS THAT CAN HELP CARRY THIS MESSAGE FORWARD AND INCREASE THE COMMUNITY HEALTH LITERACY AND ADDRESS LITERACY ISSUES IN GENERAL. THANK YOU. >> YOUR HAND WAS UP? >> I'M A LOCAL PASTOR IN WASHINGTON, D.C. ONE OF THE THINGS THAT WE ARE HAVE FOUND VERY EFFECTIVE IS BEGINNING TO LOOK AT INTEGRATIVE SERVICES. WHAT I MEAN BY THAT IS THE SEARCH DOING THE ORDINARY FOOD DISTRIBUTION INCLUDE INFORMATION SESSIONS IN AND AROUND PROVIDING INFORMATION WITH COVID. WE DO NEED IT TALK ABOUT LONG COVID MORE BECAUSE OUR COMMUNITIES DON'T REALLY KNOW MUCH ABOUT THAT. USING THE INTEGRATIVE SERVICES, WE ALSO FOUND WHEN WE BRING ALONG FOOD DISTRIBUTION AND HAVE KIDNEY DISEASE SCREENING AS WELL AS HEALTH RELATED MATTERS AS NOTED FROM OTHER SPEAKERS, WE FIND IT'S A GREAT WAY TO COMMUNITY IN A PRACTICAL WAY ABOUT COMMUNITY HEALTH. I WOULD RECOMMEND WE DO THAT BECAUSE THAT IS SOMETHING THAT IS HELPFUL WHEN WE BEGAN TO THINK ABOUT WHAT THE HOUSES OF WORSHIP CAN DO AND COMMUNITY-BASED ORGANIZATIONS CAN DO. I WOULD SAY WE SHOULD JUST NOT STOP WITH THE INTEGRATIVE SERVICES BUT LOOK AT AND USE THINGS LIKE THE ARTS. FOR EXAMPLE, WITH BLACK COALITION AGAINST COVID, WE'VE DONE POETRY SLAMS, WE'VE DONE OTHER THINGS TO BEGIN TO TALK ABOUT COVID AND VACCINATIONS AND TESTING WE CAN USE THE SAME SORT OF THING AS IT RELATES TO LONG COVID AS WELL. THANK YOU. >> THANK YOU. THERE WAS A COMMENT ABOUT SCHOOLS. >> SCHOOLS ARE A MAJOR DISSEMINATOR OF INFORMATION. AND WHETHER IT'S PAMPHLETS OR FLIERS, POST CARDS I THINK THEY'RE A GREAT PARTNER TO MAKE IT HOME THROUGH CHILDREN FROM SCHOOLS. WHETHER IT'S PASSING OUT LITERATURE OR PROVIDING SOME DEGREE OF CURRICULUM THAT SCHOOL COUNSELORS OR TEACHERS CAN UTILIZE TO INFORM THROUGH PARENT MEETINGS AND PTA ARE ADDITIONAL AVENUES THAT COULD HAVE WIDESPREAD EFFECT. >> THANK YOU FOR THAT. >> MAY I ASK A FOLLOW-UP QUESTION FOR TERESA. SHE PRESENTATIONED PREVIOUS ONLINE SUPPORT GROUPS AND WONDERING IF YOU CAN SHARE ANY SPECIFIC TO BLACK AND INDIGENOUS PEOPLE OF COLOR YOU ARE AWARE OF. >> SUPPORT GROUPS? SO THERE'S A COUPLE ON FACEBOOK BUT I'M NOT SURE HOW MUCH TRACTION THERE IS IN PARTICIPATION. I KNOW IN MY GROUP WE HAVE A GOOD AMOUNT OF ENGAGEMENT. MY GROUP IS MORE OF A SOCIAL SUPPORT GROUP AND THAT'S WHAT I'M LOOKING TO CHANGE AND WHERE I WAS ADDING THAT FOR ALL OF THESE SOCIAL SUPPORT GROUPS AND HAVE THE GRAPHICS AND INFORMATION WE COULD HAVE WOULD GO A LONG WAY. A LOT OF TIME INSIDE THE GROUPS IS SPENT IN MODERATING IS SPENT TAKING DOWN MISINFORMATION AND DELETE I DELETING INFORMATION FROM UNRELIABLE SOURCES AND HAVING SIDE CONVERSATIONS WITH PEOPLE ABOUT THE BASIC HEALTH EDUCATION AS SOMEONE MENTIONED EARLIER THERE NEEDS TO BE MORE KNOWLEDGE AND EDUCATION ABOUT HEALTH IN GENERAL AS WELL WHAT RESEARCH AND SURVEYS ARE. WHEN WE HEAR ABOUT RESEARCH IT'S I DON'T WANT TO BE YOUR GUINEA PIG. IN GROUPS LIKE MINE THAT WOULD BE THE PERFECT AVENUE FOR EDUCATING PEOPLE AND TRYING TO GET MORE PARTICIPANTS WILLING TO BE A PART OF THESE COHORTS AND OTHER TYPES OF RESEARCHING STUDIES THAT HAVE NOTHING TO DO WITH FORCING MEDICATIONS AND EXPERIMENTAL DRUGS ON PEOPLE. >> I'D LIKE TO INVITE AN EXPANSION ON THE POINT MADE ABOUT CONVERSATIONS LIKE THIS BEING SIMILAR TO EFFORTS AROUND THE CHILD TAX CREDIT. WOULD YOU MIND SPEAKING TO THAT FOR US, PLEASE. >> WHEN THE ACA WAS FIRST ENACTED TRYING TO FIGURE OUT HOW TO GET PEOPLE INTO THE SYSTEM AND HOW WE USE NAVIGATORS. THERE'S BEEN A LOT OF IMPROVEMENTS ON TO WHO ARE TRUSTED MESSENGERS AND HOW DO YOU DEFINE NAVIGATORS. TO ME PART OF THE CONVERSATION IS HOW IS THIS OUTREACH A WHOLE OF GOVERNMENT APPROACH AND HOW ARE WE REACHING PEOPLE WHO MAY BE IN OTHER PLACES OR OTHER LOCAL AGENCIES AND REACHING PEOPLE IN MULTIPLE WAYS SO WE DON'T REACH THEM IN DIFFERENT AVENUES THAT MAY NOT BE BEST NOR COMMUNITIES. I'M JUST COMMENTING ON THE FACT THAT A LOT OF THESE STRATEGIES I THINK ARE SIMILAR STRATEGIES THAT MANY GRASSROOTS AND DISTRICT SERVICE ORGANIZATIONS WERE IMPLEMENTING OVER THE LAST SIX MONTHS LAST YOU'RE TO GET FAMILIES TO SIGN UP FOR THEIR MONTHLY PAYMENT IF THEY HAVEN'T ALREADY AND MAYBE THERE'S LESSONED LEARNED AND WAYS TO STRATEGIZE AND IMPLEMENT THEM TOGETHER. MAYBE THERE'S SIMILARITIES AND OVERLAP AND YOU DISCUSSED THERE'S NOT COMPREHENSIVE DATA ON WHO HAS LONG COVID BUT JUST A THOUGHT. I HAVE AN ADDITIONAL QUESTION. IS THE PURPOSE OF THE OUTREACH JUST TO EDUCATE INDIVIDUALS IN COMMUNITIES ABOUT LONG COVID OR ALSO TO TAKE A FURTHER STEP TO GET FOLKS INTO CARE WHO MAY NOT BE ALREADY UP CARE? I'M THINKING OF IF I WERE SOMEBO SOMEBODY AND THOUGHT IF I THINK I HAVE THIS WHAT SE IS THE NEXT STEP AND IF I DON'T HAVE A DOCTOR OR UNINSURED OR UNDER INSURED. >> THE TASK FORCE THE PRESIDENT APPOINTED WE WERE CONCERNED ABOUT THOSE WITHOUT INSURANCE AND DISADVANTAGED COMMUNITIES WHERE THERE'S NOT INSURANCE OR ACCESS TO PROVIDERS. IF YOU YOU MAKE PEOPLE AWARE THEY HAVE A CONDITION AREN'T YOU ETHICALLY OBLIGED TO HELP THEM FIND TREATMENT SO THINK IT'S IMPERATIVE AS WE RAISE AWARENESS WE MAKE PLANS TO PROVIDE FOR THE CARE OF THOSE INDIVIDUALS AND RELATED TO THAT IS SOME PEOPLE MAY NOT BE ABLE TO RETURN TO WORK AND MAKE SURE THE ECONOMIC IMPACT TO THE FAMILY IS NOT SOMETHING THEY CANNOT RECOVER FROM. YOUR POINT IS WELL TAKEN. LIKE IN THE EARLY DAYS OF THE HIV EFFORT WHEN WE WERE TURNING TO GET PEOPLE TEST BEFORE THERE WERE TREATMENTS AVAILABLE AND IF YOU HAVE EVERYONE TESTED AND NO TREATMENT, WHAT DO YOU DO IN THAT SITUATION? YOU YOU RAISE A GREAT POINT WE'VE LIVED THERE BEFORE. I THINK THAT'S AN IMPORTANT CONSIDERATION COMING OUT OF THE TASK FORCE I WAS A MEMBER OF. THANK YOU FOR THAT. >> ONE QUICK FOLLOW-UP. TO CLARIFY THEN, WILL THE COMMUNICATION STRATEGIES AND THE OUTREACH STRATEGIES AND EDUCATION STRATEGIES AND AGAIN EVERYONE'S SAID THIS BUT YOU HAVE TO TAILOR MESSAGES TO THE COMMUNITY BUT WILL THAT INCLUDE -- IT IS THE GOAL OF RECOVER COVID AND THIS INITIATIVE AND OTHERS TO ENSURE WE INCLUDE TARGETED MESSAGES THAT GET PEOPLE INTO CARE JUST TO MAKE SURE I UNDERSTAND AND ARE YOU RECOMMENDING THAT. >> SO I THINK AND NIH'S ROLE IS HOW TO DEAL WITH LONG COVID. THERE'S OTHER AGENCIES LIMITED TO ENSURE PEOPLE WHO NEED THE CARE WILL GET IT. BUT ONE OF THE OTHER CONSEQUENCES OF THIS WILL BE TO MAKE SURE THAT PEOPLE OF COLOR ARE PART OF IMPORTANT STUDIES THAT NEED TO HAPPEN BECAUSE AS YOU KNOW AND ONE THEIR GOALS OF RECOVER AND I'LL LET MY COLLEAGUES WHO ARE RESPONSIBLE FOR THIS BUT I THINK IT'S A REALLY IMPORTANT PART OF WHY IT'S SO IMPORTANT THAT THESE OUTREACH EFFORTS ARE HAPPENING TOIANIAN TOIAN ENSURE -- TO ENSURE THE ANSWERS WE FIND BENEF BENEFIT EVERYONE. >> AND TO ENSURE DIVERSE POPULATION AND UNDERSTAND THE CONDITION WITH AN EYE TOWARDS CLINICAL TRIALS AS WELL. >> I WANT TO ACKNOWLEDGE IN THE CHAT AN IMPORTANT POINT MADE ABOUT WORKING WITH CHURCHES. THE FAITH COMMUNITY HAS HELPED GET THE WORD OUT ABOUT COVID AND MAKING SURE PEOPLE GET VACCINATIONS. WE ACKNOWLEDGE THE FAITH COMMUNITY PLAYS AN IMPORTANT ROLE IN THIS EFFORT AS WELL. I WOULD LIKE TO TAKE US TO THE THIRD QUESTION WHICH MEANS WE'RE NOT CLOSING THE DISCUSSION ON THIS BUT TO KEEP THINGS MOVING. THE THIRD QUESTION THAT WE WERE TALKING ABOUT WE TOUCHED ON IN A COUPLE WAYS BUT BASED ON THE KNOWLEDGE YOU HAVE ON LONG COVID ARE MEMBERS WILLING TO STUDY IN PERSON OR DIGITALLY USING THE DEVICES WITH SPOKE ABOUT EARLIER AND FURTHER CONSIDERATIONS ARE WOULD THEY BE WILLING TO SHARE THEIR PERSPECTIVE WITH DOCTORS AND SCIENTISTS BY JOINING A NATIONAL DIALOGUE OR GROUP AND ARE THERE OTHER WAYS WE MAY NOT HAVE THOUGHT ABOUT WE'D LIKE TO ENGAGE WITH THE COMMUNITIES IN TERMS OF RECOVER. AND VERY IMPORTANTLY, ARE THERE OTHER GROUPS YOU FEEL SHOULD BE DRAWN INTO RECOVER WE HAVE NOT REACHED OUT TO OR MADE REFERENCE TO? PLEASE RAISE YOUR HAND OR PUT YOUR COMMENTS IN THE CHAT AND WE'LL KEEP THE CONVERSATION GOING. SOME ALREADY MADE REFERENCE TO THE FACT THAT UNLESS THE MATERIALS ARE CULTURALLY AND LINGUISTICALLY APPROPRIATE IT WILL CREATE A CHALLENGE FOR US BUT IF WE'RE ABLE TO ACHIEVE THAT TO MAKE SURE WE DO HAVE INFORMATION AND MATERIALS THAT MEET THAT CRITERIA, WHAT DO YOU THINK WOULD BE THE LIKELIHOOD OF YOUR COMMUNITY BEING WILLING TO PARTICIPATE IN THOSE STUDIES? >> MAKING SURE THE COMMUNITY IS ENGAGED EARLY ON AND PARTICIPATING IN THE EARLIER DIALOGUES AND WITH RESPECT TO BLACK COMMUNITIES ACKNOWLEDGING THE PAST AND REPAIR SOME OF THE TRUST THAT'S OCCURRED AND MAKE SURE TO LET COMMUNITIES KNOW THEY CAN HELP SHAPE COMMUNITY HELP AND AMPLIFYING THEIR VOICE IS A CRITICAL MESSAGE TO MAKE SURE IT'S COMMUNITY AND PATIENT CENTERED TO KEEP THAT ENGAGEMENT HIGH. >> GO AHEAD, ABIGAIL. >> IF WE LOOK AT WHAT'S GOING ON JUST COVID-19 STUDIES IN PARTICULAR THE RAD X STUDIES BEING CONDUCTED BY DIFFERENT INVESTIGATORS ACROSS FUND BY THE NIH PARTICULARLY IN AMERICAN INDIAN AND ALASKAN NATIVE RESEARCH AND WE TALK ABOUT IT IN THE PAST AND I'M TALKING ABOUT YESTERDAY. AS A RESULT OF THAT THERE CONTINUES TO BE MISTRUST. I KNOW THERE'S HESITATION IN TRIBAL COMMUNITIES ABOUT THE WAY THE RAD X STUDIES MAY BE USING SAMPLES COLLECTED FOR BIO SPECIMEN RESEARCH THEY DIDN'T UNDERSTAND WOULD BE PART OF. YOU HAVE TO LOOK AT THE IMPLICATIONS OF CURRENT COVID-19 STUDIES AND THE IMPACT ON THAT AS YOU MOVE FORWARD WITH THIS NEXT ITERATION AROUND LONG COVID BUT THE ANSWER TO THIS QUESTION FROM THE NATIVE PERSPECTIVE IS YES AND NO. YOU'LL HAVE HESITANCY AND WILLINGNESS TO ENGAGE. ONE OF THE MOST IMPORTANT THINGS TO DO WILL BE ENGAGE TRIBAL COMMUNITIES, THOSE ON RESERVATIONS AND VILLAGES FROM A NATION TO NATION RESPECTING THEIR TRIBAL SOVEREIGNTY AND ENGAGING WITH THE NIH OFFICE AND THE TRIBAL ADVISORY FOLKS ARE GOING TO BE WILLING BUT THERE IS GOING TO BE HESITANCY. AS A RESULT OF THAT THERE WILL BE LIMITATIONS AND ENGAGING WITH NATIONAL AND INDIGENOUS ORGANIZATIONS AND I'LL WILLING TO SHARE A LIST IF YOU'RE INTERESTED, WILL BE KEY. AND WE HAVE TO ACKNOWLEDGE THE HISTORICAL MISSTEPS FROM YESTERDAY AND PROBABLY WILL BE TODAY AND IT'S AN ONGOING TRUST BUILDING EXERCISE THAT WILL BE IMPORTANT BECAUSE THE ENGAGEMENT OF THE COMMUNITY IN THE RESEARCH STUDIES WILL BE KEY. >> THANK YOU, ABIGAIL, YOU'RE POINTS ARE WELL TAKEN. >> I THINK SOME COMMUNITY MEMBERS WOULD PARTICIPATE AND SOME WOULDN'T. IT DEPENDS ON FUTURE PARTICIPANTS WILL ALWAYS HAVE THE RISK VERSUS BENEFIT MOMENTS WHERE THEY'RE LEARNING WHAT THIS STUDY IS AND HOW IT'S GOING TO BENEFIT THEM BUT ALSO THERE'S ONLY SO MUCH ALTRUISM THAT WILL GOT PEOPLE TO PARTICIPATE AND THERE'S TOUCH POINTS WITH THE PARTICIPANTS. WILL THERE BE CHILDCARE COVERAGE AND TRANSPORTATION COVERAGE AND THAT COULD FACTOR PARTICIPATION AND RETENTION. RETENTION IS A MAJOR ISSUE. ALSO THE ABILITY FOR RAPPORT AND WHEN PARTICIPANTS CHANGE PHONE NUMBERS YOU CAN MAINTAIN COMMUNICATION IS ANOTHER CHALLENGE FOR RETENTION AND GOING BACK TO THE RISK-BENEFIT CALCULATION IF THERE'S A MONETARY BENEFIT THAT COULD BE AN INCENTIVE TO PARTICIPATE AND IN TERMS OF DIFFERENT MODALITIES OF PARTICIPATION IT DEPENDS ON THE AGE GROUP AND DIGITAL DIVIDE. YOU HAVE FOLKS WILLING TO PARTICIPATE ON A FACEBOOK CALL AND ZOOM CALL AND THOSE WHO WANT SOMETHING IN PERSON FACE TO FACE AND IN BETWEEN. TEXT MESSAGING PARTICIPATION AND WAYS TO CONNECT FOLKS DEPENDING ON THE AGE GROUPS AND ACCESS IN ADDITION TO HAVING DATA COLLECTORS OR THOSE WHO LOOK LIKE THE COMMUNITY THEY'RE TRYING TO CONNECT WITH. IF IT'S SPANISH SPEAKING PARTICIPANTS AND SPANISH SPEAKING DATA COLLECTOR THAT'S ALSO IMPORTANT TO CONSIDER AND THOSE THE COMMENTS I'D LIKE TO PROVIDE. >> EDWARD IVY WITH THE ORGANIZATION OF CARDIOLOGISTS AND WE HAVE BEEN WORKING WITH THE COMMUNITY DURING THIS PANDEMIC USING ZOOM PLATFORMS AND OTHERS TO EDUCATE PARTICIPANTS AND THEY HAVE BEEN VERY ENGAGED. THEY WANT THE KNOWLEDGE BUT IT'S GOING IT TAKE USING THE INDIVIDUALS ON THE GROUND THAT UNDERSTAND THE GAPS AND CHALLENGES THAT EXIST IN THAT COMMUNITY TO BE A PART OF THE PROCESS. AND I THINK WITH THAT WE HAVE TO INCLUDE THEM EARLIER ON. ENGAGING COMMUNITIES LIKE YOU'RE DOING RIGHT NOW IS VERY EFFECTIVE BUT MAKING SURE WE CONTINUE TO ENGAGE THE INDIVIDUALS ON THE GROUND INTERACTING DIRECTLY WITH THE COMMUNITY. IT'S COMMUNITY HEALTH TRAINING PARTICIPANTS WE BEEN ABLE TO INCREASE KNOWLEDGE ABOUT CARDIOVASCULAR DISEASE BECAUSE IT'S STILL THE NUMBER ONE CAUSE OF DEATH IN THE U.S. AND USING OUR NETWORK OF CARDIOLOGISTS AND PROVIDERS FOR OUR COMMUNITY HAS BEEN A WAY TO ENGAGE THE COMMUNITY AND GET MORE PARTICIPATION. I WANT TO ECHO LIKE EVERYONE HAS SAID, PEDRO AND OTHERS, IT WILL TAKE THE ENGAGING THE COMMUNITY EARLIER ON AND KEEPING THAT ENGAGEMENT MOVING FORWARD. >> JENNIFER. >> I THINK PEDRO TOOK EVERYTHING I WAS GOING TO SAY AND SAID IT REALLY WELL SO I WON'T REPEAT TOO MUCH AND I DON'T SPEAK FOR ALL ASIAN AMERICAN AND PACIFIC ISLANDERS AND THERE'S MANY LANGUAGES AND ETHNICITIES AND WE LEARNED IS WE NEED TO ENGAGE COMMUNITIES THROUGH BILINGUAL CULTURAL NURSES AND THOSE ARE THE FOLKS PEOPLE WILL TRUST. TRUSTED COMMUNITY ORGANIZATIONS LIKE WHAT EVERYONE SAID ARE THE GROUPS THAT ASIAN AND PACIFIC ISLANDERS WILL GRAVITATE TOWARDS AND YES, PEOPLE FROM OUR COMMUNITIES WILL JOIN IN THIS DIALOGUE AND PARTICIPATE IN YOUR ENGAGEMENT EFFORTS AND THERE'S GOING TO BE VARIATIONS BECAUSE OF HEALTH LITERACY AND LITERACY IN GENERAL AND YOU'LL HAVE YOUNGER FOLKS WHO WILL ENGAGE IN MORE SOCIAL MEDIA AND WITH THE OLDER POPULATION I KNOW FROM MY OWN WORK WITH COMMUNITY HEALTH WORKERS, YOU REALLY HAVE TO HAVE SOMEONE WHO SPEAKS THE LANGUAGE WHO THEY SEE AND TRUST IS GOING TO BE ABLE TO HELP THEM NAVIGATE THESE DIALOGUES. I JUST WANTED TO ADD THAT PIECE. >> THANK YOU, VERY MUCH AND I THINK WE ARE COMING CLOSE TO THE END OF OUR TIME HERE. I BELIEVE IT'S TIME FOR ME TO -- OH, DR. WILLIAMS, PLEASE, I SEE YOUR HAND IS RAISED. >> I'M SORRY, I HAVE THIS QUESTION OR STATEMENT BECAUSE IT'S COME UP MULTIPLE TIMES. I REALLY APPRECIATE WANTING DOCUMENTS TO BE IN PLAIN LANGUAGE AND TAKE INTO CONSIDERATION HEALTH LITERACY AND REALLY AT THE CSC WE SPEND A LOT OF TIME ON OUR DOCUMENTS FROM THE PROTOCOL CONSENT FORMS, RECRUITMENT MATERIALS WHERE WE SEND A SIGNIFICANT AMOUNT OF TIME ADDRESSING HEALTH LITERACY AND PLAIN LANGUAGE SO THANK YOU FOR THAT COMMENT. >> THANK YOU, DR. WILLIAMS. >> AS FAR AS PEOPLE PARTICIPATING IN THE STUDIES I THINK THEY NEED TWO THINGS TO MOTIVATE THEM. ONE IS ANONYMITY BECAUSE OF THE CONCERN OF UNSCRUPULOUS SCIENCE THAT'S HAPPENED IN THE PAST. AND ALSO PEOPLE WANTED TO BE ASSURED THAT THEIR INFORMATION WON'T BE HELD AGAINST THEM OR PUT SOME PLACE WHERE IN THE FUTURE IT CAN COME BACK TO BE A PROBLEM WITH THEIR EMPLOYMENT OR ANY OTHER CASE AND INCENTIVES. THERE'S A FEELING OF RIGHT NOW THE MEDICAL AND RESEARCH COMMUNITY IS ASKING, ASKING, ASKING. THERE'S A LOT OF GIVE US INFORMATION, GIVE, GIVE, GIVE WITHOUT AN OBVIOUS RECIPROCATION OF WHAT THE PARTICIPANT CAN EXPECT IN RETURN AND GETTING MORE TO PARTICIPATE, CONSIDER THE TIME FRAME IN WHICH THE IN PERSON MEETINGS OR DIGITAL MEETINGS WOULD TAKE PLACE BECAUSE A LOT OF PEOPLE ARE WORKING CLASS. MISSING WORK MIDDAY FOR MEETINGS LIKE THIS, FOR EXAMPLE IS NOT CONVENIENT FOR A LOT OF PEOPLE. WE HAVE TO CONSIDER THE TIMING AND LATER EVENING TO ACCOMMODATE A LOT OF PEOPLE'S WORK AND HOME SITUATIONS AND THAT COULD HELP INCREASE THEIR DESIRE TO PARTICIPATE. FINALLY, WHEN YOU THINK OF HAVING A NATIONAL DIALOGUE, THAT CAN FEEL AND SOUND WEIGHTY TO THE AVERAGE PERSON. DO YOU WANT TO ATTEND A LISTENING SESSION WITH THE NIH. THERE'S PRECONCEIVED NOTION THERE'LL BE CONVERSATION OVER OUR HEAD AND PONTIFICATING FROM EXTREMELY EDUCATED PEOPLE AND THE AVERAGE JOE MAY NOT HAVE A PLACE AT THAT TABLE. BEING ABLE TO FRAME THESE MEETINGS WOULD HELP INCREASE PARTICIPATION AND ALSO POSSIBLY HOW CAN THE SAME MEETINGS BE ORGANIZED IN A MORE LOCAL ASPECT WHETHER IT'S TRAINED OPERATIVES AND FACILITATORS WHO COULD DAO DO COMMUNITY MEETINGS AT THE CHURCHES OR SCHOOLS SO IT'S A MORE INTIMATE AND FAMILIAR SETTING WITH PEOPLE PARTICIPANTS CAN FEEL RELATABLE TO. >> THANK YOU. THOSE ARE EXCELLENT POINTS. I APPRECIATE IT. EDWARD, DID YOU HAVE YOUR HAND UP? >> I SHOULD HAVE SAID IT HIT AT THE CONCLUSION OF MY PREVIOUS COMMENT BUT WE NEED TO BE CLEAR ON WHAT YOUR ASK IS AND WHAT YOU WANT COMMUNITY MEMBERS TO DO AND PARTICULARLY IF YOU'RE GOING TO ENGAGE GROUPS. I HEARD LET'S GET COMMUNITY HEALTH ADVOCATES BUT WHAT IS IT YOU WANT THOSE ADVOCATES TO DO. WHAT MESSAGE DO YOU WANT THEM TO DELIVER TO THE COMMUNITY? AND IT WOULD BE WONDERFUL IF THERE IS FOLLOW-UP IN TERMS MUCH HEY, I THINK I HAD LONG COVID WHAT SHOULD I DO IN TERMS GETTING CARE. THAT NEEDS TO BE FLUSHED OUT BEFORE YOU START GOING TO COMMUNITIES WHERE ACCESS MAY BE LOW ALREADY AND THEY START FEELING MORE DISENFRANCHISED BECAUSE YOU'RE NOT GIVING THEM SOLUTIONS OR STEPS TO TAKE AND I WANT TO MAKE SURE YOU'RE ASK OF A COMMUNITY IS VERY CLEAR AND ANY FOLLOW-UP THAT NEEDS TO HAPPEN, THAT PROCESS IS VERY CLEAR AS WELL. >> EXCELLENT, THANK YOU, EDWARD, VERY MUCH FOR THAT. THERE'S A QUESTION WOULD THE RECOVER WEBSITE BE A ONE STOP SHOP WITH OUTREACH MATERIALS, SOCIAL MEDIA, ETCETERA. WOULD IT BE HELPFUL -- IT WOULD BE HELPFUL TO HAVE SUCH A ONE-STOP SHOP. DR. WILLIAMS, DR. LERNER, DO YOU WANT TO COMMENT ON THAT? >> THAT'S THE IDEA TO HAVE THE CONVENIENCE ONE STOP SHOP TO GO FOR EVERYTHING RECOVER. WE'RE ALSO GOING TO BE SHARING AT THE CLOSE OF MEETING TO SIGN UP FOR UPDATES ABOUT THE INITIATIVE SO THAT'S ANOTHER WAY TO KEEP TABS ON THINGS BUT YEAH, WE HEAR YOU ABOUT THE EASE OF A ONE-STOP SHOP. >> AT THIS POINT IT MAY BE APPROPRIATE TO ASK IF THERE'S ANY OTHER COMMENTS OR QUESTIONS ON ANY ONE OF THE THREE MAIN QUESTION OR JUST SOMETHING YOU THINK THE RECOVERY TEAM NEEDS TO KNOW IN TERMS OF THE WORK THEY'RE TRYING TO DO RELATED TO THIS COMMUNITIES YOU REPRESENT? I'LL OPEN IT UP FOR GENERAL COMMENTS BEFORE I TURN IT BACK TO DR. WILLIAMS. DID ANYONE HAVE CLOSING THOUGHTS OR QUESTIONS OR CONCERNS? SO I WANT TO SAY I'M GRATEFUL FOR THE OPPORTUNITY FOR THIS CONVERSATION. I THINK THE WORK THAT RECOVER IS GOING TO DO AND THE RESEARCH IS GOING TO DO IS GOING TO BE REALLY IMPORTANT BUT WILL NOT BE SUCCESSFUL UNLESS OUR COMMUNITIES PARTICIPATE. WE HOPE YOU'LL ENGAGE TO MAKE THIS HAPPEN AND THIS IS REALLY IMPORTANT BUT FROM THE SARS PANDEMIC OF 2003, THERE ARE INDIVIDUALS WHO COULD NOT GO BACK TO WORK FOR AS LONG AS TWO YEARS. I'M NOT SAYING THAT'S GOING TO BE THE CASE HERE BUT THIS WILL BE A REALLY IMPORTANT PROBLEM FOR SOME TIME TO COME. THIS WORK IS REALLY IMPORTANT AND HOPE UP ENGAGE WITH US TO GET THIS DONE. I'LL TURN IT BACK TO DR. WILLIAMS. THANK YOU VERY MUCH FOR THE CHANCE TO BE A PART OF THIS REALLY IMPORTANT CONVERSATION. >> I'D LIKE TO ECHO DR. HILLDRETH'S COMMENTS AND SAY THANK YOU VERY MUCH. WE APPRECIATE THE SESSION TODAY AND ALL THE FEEDBACK THAT YOU ALL HAVE PROVIDED. WE HAVE THE SITE HERE WHERE YOU CAN SEE OTHER WAYS TO BE IN TOUCH AND LEARN MORE ABOUT THE RECOVER INITIATIVE AND ALSO TO SHARE THAT WE DO PLAN TO HAVE ADDITIONAL LISTENING SESSIONS FOR SPECIFIC COMMUNITIES AND WE WELCOME PARTNERING WITH YOU AS WE ROLL OUT THOSE OTHER SESSIONS AS WELL. SO THANK YOU ALL SO MUCH. HAVE A WONDERFUL AFTERNOON.