‘Adding another spinning plate to an already busy life’.Benefits and risks in patient partner–researcher relationships: a qualitative study of patient partners’ experiences in a Canadian health research setting

Abstract

ObjectiveTo better understand, based on patient partners’ experiences, benefits and risks in patient partner–researcher relationships in a health research setting.DesignQualitative interviews with thematic analysis informed by a relational ethics lens.SettingA multidisciplinary health research centre in Vancouver, Canada. This study was codeveloped by patient partners and researchers at the centre.Participants22 people living with arthritis, with experience as members of a patient advisory board at the research centre from 1 month to 10 years.ResultsWe identified three main themes: (1) Being Heard: Participants had experienced uncomfortable emotions (eg, feelings of insecurity) in their relationships with researchers. The discomfort, however, was minimised by the demonstration of mutual respect in their interactions. Specifically, participants valued environments without a hierarchy between patient partners and researchers, where contributions of each party were considered equally important, and where patients’ voices were heard; (2) Cobuilding social relations: Participants valued building social relations with researchers beyond their expected interactions as partners in research and (3) Adding another spinning plate to an already busy life: Participants valued relationships with researchers who had cocreated environments that minimised the risks of physical and emotional impacts (eg, fatigue, stress, guilt) on them while juggling multiple obligations, priorities and their health.ConclusionsFindings provide valuable insights to guide relationship building between patient partners and researchers. Informed by a relational ethics lens, these findings are a critical step in supporting an ethically sound practice of patient engagement in research that prioritises patients’ perspectives.

Hemophilia trials in the twenty‐first century: Defining patient important outcomes

“…In brief, choosing and collecting PIOs and PROs is becoming an essential component of clinical trials . Each trial should measure PIOs, which can be clinical or PROs.…”

“…What matters to patients are outcomes that encompass the whole cycle of care: survival, functional status, and quality of life . The value of patient participation in research design as well as with participation has been recognized …”

“…[60][61][62][63][64][65][66][67] In brief, choosing and collecting PIOs and PROs is becoming an essential component of clinical trials. [68][69][70] Each trial should measure PIOs, which can be clinical or PROs. It is now recognized that patients have a unique perspective and will consider issues differently than clinicians, scientists, regulators, and manufacturers.…”

Executive summary of the NHLBI State of the Science (SOS) Workshop: Overview and next steps in generating a national blueprint for future research on factor VIII inhibitors

“…This will help determine which burdens of disease matter most and what aspects of clinical trials can be tailored for the PWH/subject. In addition, families will better understand the importance of clinical trials and how their participation will help improve care for haemophilia . PWH have a unique perspective and will consider issues differently than regulators, manufacturers, scientists, clinicians and payers.…”

“…In addition, families will better understand the importance of clinical trials and how their participation will help improve care for haemophilia. [23][24][25] PWH have a unique perspective and will consider issues differently than regulators, manufacturers, scientists, clinicians and payers. Thus, this perspective needs to be considered throughout the process of selecting outcomes of importance and the development of PRO instruments.…”