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Frontiers | Assessing the influence of lived-experience experts on healthcare providers in a virtual community of practice: a qualitative study
Long COVID, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and other poorly understood post-acute infection syndromes (PAIS) can present with u...
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ORIGINAL RESEARCH article
Front. Health Serv., 27 June 2025
Sec. Implementation Science
Volume 5 - 2025 | https://doi.org/10.3389/frhs.2025.1562651
Assessing the influence of lived-experience experts on healthcare providers in a virtual community of practice: a qualitative study
Stephanie Sargent Weaver1*
Jeanne Bertolli1
Job Godino3,4
Bruce Struminger5
Douglas Taren6
John D. Scott7
Sydney P. Sharp4
Jane Samaniego4
Anindita Issa1
Jin-Mann S. Lin1
Elizabeth R. Unger1
- 1Centers for Disease Control and Prevention, National Center for Emerging and Zoonotic Infectious Diseases, Chronic Viral Diseases Branch, Atlanta, GA, United States
- 2Centers for Disease Control and Prevention, Global Health Center, HIV Prevention Branch, Atlanta, GA, United States
- 3Herbert Wertheim School of Public Health and Human Longevity Science, University of California, San Diego, La Jolla, CA, United States
- 4Laura Rodriguez Research Institute, Family Health Centers of San Diego, San Diego, CA, United States
- 5Department of Internal Medicine, University of New Mexico, Albuquerque, NM, United States
- 6Department of Pediatrics, Nutrition Section, University of Colorado School of Medicine, Aurora, CO, United States
- 7Allergy and Infectious Diseases, University of Washington, Seattle, WA, United States
- 8PHI/CDC Global Health Fellowship Program, Public Health Institute, Oakland, CA, United States
To address these issues, the Centers for Disease Control and Prevention (CDC) funded the Long COVID and Fatiguing Illness Recovery Program (LC&FIRP), initiated as a pilot project to assess whether providing tele-mentoring and other online education for primary care providers could help them improve the quality of life and support the recovery of their patients with these conditions.
The LC&FIRP multi-disciplinary team-based care approach is built on the Extension for Community Healthcare Outcomes (ECHO) learning model, which is an evidence-based virtual learning framework developed by the University of New Mexico and designed to disseminate and implement best practices, especially in under-resourced areas.
A distinctive feature of LC&FIRP was the inclusion of lived-experience experts.
To explore the influence of lived-experience experts on the care patients received, we collected the educational recommendations provided by the lived-experience experts during webinar sessions (January 2022—March 2024) and grouped these by themes.
The major themes that emerged included validation of patients’ illness experience; attitudes and beliefs about Long COVID, ME/CFS, and PAIS; understanding patients’ challenges and communicating with empathy; navigating referrals; recognizing and supporting disability; and supporting self-care.
Investigators also interviewed patients of the Family Health Centers of San Diego (FHCSD) about their experiences receiving care from participating primary care providers and employed content analysis methods to code interview transcripts to identify themes among patients’ perspectives.
Positive comments from the patients about topics emphasized by the lived-experience experts provided evidence of providers’ uptake and application of the experts’ recommendations and support the value of involving lived-experience experts in medical education to improve health services.
