Evolution of a research team: the patient partner perspective

Area of Science:

• Patient-centered research
• Community-based participatory research
• Health equity in asthma management

Background:

• Growing emphasis on including patient partners in research teams.
• Limited documentation of patient engagement from the patient partner's viewpoint.

Purpose of the Study:

• To explore and summarize the experiences of patient partners (PPs) in the PeRson EmPowered Asthma RElief (PREPARE) study.
• To understand the impact of patient engagement on PPs and research dynamics.

Main Methods:

• Qualitative interviews conducted with 16 Patient Partners (PPs) involved in the PREPARE study.
• The PREPARE study is a large, pragmatic trial focusing on adults with asthma from African American/Black and Hispanic/Latinx communities.

Main Results:

• Patient Partners initially sought to learn about asthma and advocate for others.
• Challenges like intimidation and mistrust were overcome by fostering a supportive environment valuing PP experiences and beliefs.
• Patient Partners developed confidence, expressed feedback, and took ownership, leading to personal and professional growth.
• The dynamic shifted, modeling a new collaborative relationship between researchers and patient partners.

Conclusions:

• The PREPARE study demonstrated an evolution of the patient partner role from advisors to empowered, integral members of the research team.
• This collaborative partnership significantly enhanced the research process and outcomes.