Primary Submission Category: Methodological approaches to studying public health
Engaging Patients in Qualitative Research to Advance Population Health
Authors:Â Jacquelyn Jacobs, Lizbeth Garcia, Patricia Labellarte, Kelsey Barnick, Yasmeen Santana,
Presenting Author: Lizbeth Garcia*
In the last decade, community engagement has gained prominence, with evidence suggesting that involving persons with lived experience can generate more culturally appropriate findings, feasible interventions, and nuanced result interpretation. In 2023, Sinai Health System, Illinois’ largest private safety-net health system, launched a study to examine optimal care options for patients with diabetes, including participatory engagement with a Patient Advisory Committee (PAC). This presentation will describe methods for preparing PAC members for qualitative research, strategies to lead them through analysis, and the value of patient engagement to improve population health.
The PAC comprises six individuals 18+ living with diabetes. Members joined five 90-minute virtual meetings. Topics included focus group guide development, qualitative analysis training, and coding/theme development. Additional coding/theme development and sense-making sessions are forthcoming. We follow community-based participatory research principles by building on community strengths, centering the lived experience of persons living with diabetes, facilitating partnership between community residents and researchers, and encouraging co-learning and empowerment.
Preliminary findings highlight the value of including patients with lived experience in analysis and interpretation. This engagement builds community capacity, enhances meaningfulness of results, and improves trust in researchers. Key strategies included providing qualitative methods training, compensating participants for their time, and offering technology support. PAC members expressed a deeper understanding of research processes, building trust between researchers and community residents. They developed qualitative research skills and increased the validity of findings. Notably, PAC members identified novel codes, shared personal stories, and provided insights the research team alone could not have developed, yielding richer results.