Learning from those most impacted by Long COVID
Meet the RECOVER Representatives, who are partners in and ambassadors for the Initiative’s Long COVID research.
Overview
Representatives lead RECOVER’s efforts to ensure that its studies reflect and respond to the many different lived experiences of those affected by Long COVID. Representative contributions were instrumental to RECOVER’s formation in 2021, and their continuing contributions have established RECOVER as a model for how to conduct patient- and community-centered medical research on a large scale.
Representatives include people who:
- COVID, Long COVID, or both have affected large numbers of people.
- People have lower incomes.
- People face difficulties accessing health care services.
Based on their background, Representatives join one of 3 groups, each of which has a specific focus.
- Patient Representatives explain how Long COVID affects every aspect of their health and daily lives.
- Caregiver Representatives share how supporting loved ones experiencing Long COVID affects their own well-being.
- Community Representatives ensure that RECOVER considers the voices and perspectives of those populations most impacted or burdened by Long COVID.
Representatives can belong to more than one of these 3 groups. Having membership in more than one group allows Representatives to offer broader and deeper insights into how Long COVID—from its causes and symptoms to its social and economic impact—can be different for everyone.
Play the following video to hear from more of our Representatives as they talk about the important roles they play in RECOVER.
Responsibilities
As key partners in and ambassadors for RECOVER, Representatives inform the Initiative’s research to understand, diagnose, prevent, and treat Long COVID by:
- Sharing their lived experiences, knowledge, and professional expertise.
- Creating opportunities for people to learn about and take part in studies.
- Making study findings easy to understand and use.
- Telling their communities about RECOVER’s progress.
Representatives engage in a wide range of activities to achieve these impacts. These activities include:
- Collaborating with researchers to design RECOVER’s observational studies and clinical trials.
- Co-creating symptom surveys, recruitment flyers, and other study materials.
- Co-authoring publications.
- Explaining study findings during R3 seminars, in Discover RECOVER videos, and at conferences.
- Serving on committees and task forces.
- Supporting each other through training, mentoring, and the development of processes and procedures.
Representatives are compensated for their time and their participation is renewed each year.
“I’ve seen the immediate impact that my voice, opinions, and experience have had... this is probably one of the rare times I’ve seen regular people’s thoughts, opinions, and experiences be applied and used for the good of their community and so quickly.”
Teresa from Georgia
Patient and Community Representative
Leadership
The National Community Engagement Group (NCEG) provides leadership for RECOVER’s more than 100 Representatives. More than 2 in 3 of the NCEG’s members identify as patients with Long COVID.
The NCEG promotes meaningful discussion, genuine partnership, and shared decision-making by:
- Consulting on research, communication activities, community engagement, and more through the activities of 3 subcommittees: the Communications Subcommittee, the Publications Subcommittee, and the Representative Engagement Subcommittee.
- Ensuring that people with different backgrounds have the same opportunities to participate in RECOVER studies.
- Promoting the importance of lived experiences by centering the voices of patients, caregivers, and community members.
Six Co-Chairs lead the NCEG. NCEG Co-Chairs may serve up to 2 one-year terms. Several NCEG Co-Chairs serve on coordinating committees that provide leadership for RECOVER as a whole. Specifically, of the 6 NCEG Co-Chairs:
- Two are also members of the Observational Consortium Steering Committee (OCSC).
- One is also member of the Clinical Trials Steering Committee.
View a list of the current NCEG Co-Chairs and learn more about their responsibilities.
How to Join
The process of becoming a Representative has 3 steps.
- Be nominated by someone else or submit your own application.
- Complete a brief survey online or over the phone.The survey includes questions about your:
- Background: Age, sex, race/ethnicity, and where you live.
- Experience with:
- COVID and Long COVID.
- Medical or social research.
- Community-engaged work (personal or professional).
- Reasons for wanting to become a Representative.
- Availability to attend meetings.
- Engagement in other RECOVER activities.
- The RECOVER Administrative Coordinating Center (ACC) reviews the survey responses and selects people to serve as Representatives.
Learn more or express your interest about becoming a Representative by emailing RECOVER_REPS@rti.org.
Accomplishments
The NCEG compiles a list of the specific contributions Representatives have made to RECOVER in the previous year. These lists contain updates and details about:
- Representatives’ ongoing activities
- Expansions to Representative roles and responsibilities
- New initiatives launched, especially initiatives involving innovative approaches to research, communication, or community engagement
- Milestones reached
- Impact achieved
Expand the sections below to view these annual lists of Representative accomplishments.
- Consulted on RECOVER clinical trials: Representatives reviewed and provided feedback on protocols, materials, and recruitment documents for studies testing the safety and effectiveness of treatments for Long COVID symptoms. Representatives also shared recommendations on how to support trial participants and keep them engaged.
- Participated in RECOVER-TLC kickoff meeting: Representatives shared their knowledge, perspectives, and experiences at this 3-day event to plan the next phase of RECOVER clinical trials: RECOVER–Treating Long COVID (RECOVER-TLC).
- Reviewed pathobiology study proposals: Representatives evaluated applications for funding submitted for RECOVER PASC Pathobiology Substudies (Research Opportunity Announcement [ROA] OTA-21-015J).
- Launched Discover RECOVER video series: Representatives created the concept for and appeared on camera in these short videos summarizing important RECOVER research findings.
- Co-authored 17 RECOVER publications: Representatives also collaborated with researchers on an additional 45 manuscripts, or publications in progress.
- Presented at scientific conferences: Representatives shared RECOVER research findings by participating in presentations at events including the University of California at Los Angeles (UCLA) Long COVID in Pediatrics conference, Pediatric Academic Societies (PAS) meetings, and the annual meeting of the American Public Health Association (APHA).
- Held listening sessions: Representatives developed and initiated a plan for Community Engagement Listening Sessions.
- Increased number of Representatives: The NCEG onboarded 38 new RECOVER Representatives. Representatives also elected and onboarded new NCEG members and Co-Chairs.
- Created the Representative directory: The NCEG expanded the Representative network by creating a directory, making it easier for Representatives to connect with one another.
- Enhanced Peer Exchange participation: The NCEG Engagement Subcommittee transitioned Peer Exchange to a paid activity, resulting in a growth of participants from approximately 10 to 30.
- Extended recruitment enrollment period: Representatives from Hispanic and rural communities helped RECOVER researchers recruit more study participants from their communities.
- Revised legal next-of-kin surveys: Representatives provided caregiver and disability perspectives to improve the form for the families of people enrolled in RECOVER autopsy studies.
- Co-authored RECOVER research publications: Representatives partnered with RECOVER researchers to share study findings reflective of their communities.
- Made RECOVER research more accessible: The NCEG Communications Subcommittee reviewed RECOVER plain language research summaries and other dissemination materials.
- Presented at RECOVER Research Review (R3) Seminars: Multiple Representatives spoke as panelists at R3 seminars.
- Developed authorship training: The NCEG Publications Subcommittee developed authorship training for Representatives and researchers.
- Created Representative newsletter: The NCEG Representative Engagement Subcommittee collaborated with RECOVER leaders to make communications with Representatives more transparent.
- Met with National Institutes of Health (NIH) leaders: NCEG Co-Chairs worked with NIH to guide community engagement restructuring.
- Formed NCEG Subcommittees: Representatives joined NCEG Publications, Representative Engagement, and Communications Subcommittees.
- Advocated for additional seats: NCEG Co-Chairs successfully petitioned for additional Representative seats on the RECOVER Cores Operations Group (COG) and Steering Committee.
- Extended inclusion criteria: Representatives supported changing inclusion criteria to extend the period from a prior positive COVID test to 36 months.
- Developed community-specific study materials: Representatives joined focus groups to create recruitment materials tailored to American Indian/Alaska Native, Black, and Hispanic communities.
- Created participant feedback questionnaire: Representatives helped create a questionnaire to collect feedback from participants about their experiences with the RECOVER studies.
- Provided feedback on adult study: Representatives provided feedback on the adult protocol symptom questionnaire and Manual of Operations and Procedures (MOP).
- Modified adult comorbidities case report form: The RECOVER COG approved Representative recommendations to modify this form.
- Reviewed clinical trials ROAs: Representatives reviewed and provided feedback on how RECOVER engages researchers interested in studying potential treatments for Long COVID. Representatives also joined the protocol working groups and provided input on the design of RECOVER clinical trials.
- Participated in Integrative Physiology Task Force: Representatives provided input on tests to measure how Long COVID affects a range of body functions.
- Drafted Representative authorship guidelines: Co-developed a process for Representatives working on RECOVER manuscripts.
- Created Learning Hubs: Created Learning Hub forums to meet Representatives’ needs and engage with study sites.
- Produced Representative journey video: Representatives helped create a video showing how they impact RECOVER.
- Updated payment process: Representatives voted on different payment options and chose how often to be paid.
- Evaluated community engagement structure: Representatives revised roles, responsibilities, and engagement trainings.
- Held first NCEG meeting: More than 15 Representatives attended.
- Joined Steering and Executive Committees: Representatives gained seats on the Steering and Executive committees.
- Presented on Representative engagement: The Community Engagement team presented strategies and accomplishments to the U.S. Department of Health and Human Services (DHHS).
- Collaborated with White House Long COVID Council: The Council presented at the NCEG meeting at the Representatives’ request.
- Informed study plans: Representatives attended meetings to help create study plans.
- Set rule that positive COVID tests are not needed to participate in studies: Participants who had COVID no longer need to present a positive COVID test result to join observational studies.
- Included participants who had COVID at any time in the past: Representatives updated inclusion criteria so people who had COVID at the start of the pandemic (including more than 12 months ago) can join studies.
- Reviewed recruitment materials: Representatives reviewed and gave input on materials to recruit study participants.
- Developed symptom survey: Representatives completed the first draft of a participant symptom survey taken from the Body Politic (patient group) survey. Representatives later revised this draft and reorganized the survey to ask about Long COVID physical symptoms first, then mental health symptoms.
- Contributed to participant survey: Representatives added the question “Do you think you have Long COVID?” and questions specific to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
- Revised Standard Operating Plan (SOP) and Case Report Form (CRF): Representatives changed the SOP to return clinical results to participants. Representatives changed the CRF to give people with ME/CFS accommodations to complete it.
- Finalized committee assignments: Representatives received their preferred committee assignments.
“I’ve used my role within the patient experience to enlighten the doctors on some of the things I experienced at my particular site. Those experiences were then shaped into directives that were then distributed to several of the sites and were immediately implemented.”
Belinda from Maryland
Patient and Caregiver Representative
Resources
Explore other RECOVER resources:
View the list of RECOVER experts on ME/CFS, postural orthostatic tachycardia syndrome (POTS), and other post-infection conditions.
Connect with organizations and healthcare providers who provide services for people experiencing the long-term effects of infectious diseases, including COVID and Long COVID.
Learn how to get care for a child experiencing symptoms of Long COVID.
Learn about the progress RECOVER has made toward developing a working definition of Long COVID in adults.
Learn more about RECOVER’s research findings and methods:
Read RECOVER’s study plans on observational cohort studies for adults, children, and pregnant women.