Evolution of a research team: the patient partner perspective

Abstract

Plain English Summary Patients and caregivers who have lived with a condition have an important and unique perspective researchers should consider. To this end, patients and caregivers have expanded their involvement in the design and conduct of clinical research, joining research teams and being engaged in the research process from start to finish. Researchers have reported on the positive impact that these “patient partners” or “patient advisors” have on research. But few papers report on the impact on the patient partners/advisors from being on a research team. Here we report the lived experiences of the 16 Patient Partners who served on the research team for a large study of 1200 African American/Black (AA/B) and Hispanic/Latinx (H/L) adults with asthma. These Patient Partners offered their input over 7 years, spanning from study design, study conduct, understanding results, to sharing results. To understand the Patient Partners’ experiences, we conducted interviews asking about their journey on the research team. Motivations and reasons they became Patient Partners Initial experiences with the research team If and how over time, they became comfortable and developed confidence If and how the research team made them feel valued and respected The personal and professional impact of being a Patient Partner Their advice to researchers and fellow patients considering including or joining as Patient Partners or advisors By reporting the perspectives of these 16 Patient Partners, we hope to support continued movement toward broader and better inclusion of patients and caregivers on research teams.

Keywords

• Patient partner
• Patient advisor
• Patient engagement