Evolution of a research team: the patient partner perspective

• Published in: Research involvement and engagement Vol. 8; no. 1; pp. 1 - 42
• Main Authors: Madison, Suzanne, Colon-Moya, Alex D, Morales-Cosme, Wilfredo, Lorenzi, Margie, Diaz, Aracelis, Hickson, Bridget, Monteiro, Kathy, Muniz Ruiz, Alexander, Perez, Addie, Redondo, Richard, Reid, Dennis, Robles, Janet, Santiago, Marsha, Thompson, Opal, Wade, Joyce, White, Mary, Castillo, Graciela, Valenzuela, Cristian
• Format: Journal Article
• Language: English
• Published: London BioMed Central Ltd 24-08-2022; BioMed Central; BMC
• Subjects: Advisors; Alliances; Asthma; Caregivers; Data analysis; Hispanic Americans; Interviews; Medical research; Medicine, Experimental; Meetings; Patient advisor; Patient engagement; Patient partner; Patients; Stakeholders; Teams; United States > US
• ISSN: 2056-7529; 2056-7529
• DOI: 10.1186/s40900-022-00377-3

Despite a movement toward the inclusion of patient partners or advisors as part of the research team in all funded studies, few publications have discussed patient engagement from the patient partners' perspective. Qualitative interviews were conducted by independent qualitative researchers to collect and summarize the experiences and perspectives of the 16 Patient Partners (PPs) on the study team for PeRson EmPowered Asthma RElief (PREPARE), a large, pragmatic study of 1200 African American/Black (AA/B) and Hispanic/Latinx (H/L) adults with asthma. This study was funded by the Patient-Centered Outcomes Research Institute. This paper, authored by the PPs themselves, summarizes qualitative interview findings. The journey of the PREPARE PPs began with a desire to learn more about asthma and advocate for other individuals with asthma. Many challenges, including intimidation and lack of trust, were overcome as the research team prioritized building a comfortable environment in which PPs' lived experiences, opinions, and cultural beliefs are valued, and in which PP voices are centered and respected. Over time, the PPs gained confidence in expressing ideas and feedback, and in taking ownership of their role as valued members of the research team. The PP experience has had tremendous personal and professional impact on the PPs themselves, while also modeling a change in the way researchers and PPs relate to and partner with each other. The partnership between PPs and researchers in the PREPARE study has elevated the PP role from external advisors to integral and empowered members of a collective research team, and the partnership developed and evolved over time.