Background/Purpose: Patient engagement in research has become a key requirement of many research funding organizations in Western countries. The principle of justice is central to patient engagement, indicating an ethical imperative for people who may be affected by health research to have the right, if they choose, to a say in what and how research is undertaken. There is, however, little empirical evidence to better understand ethical issues encountered in the everyday practice of patient engagement, particularly from the perspectives of patients. Our objective is to explore benefits and risks within patient-researcher relationships from the perspectives of arthritis patients with experience engaging in the research process.

Methods: The project is jointly designed and conducted by researchers and patient partners. Participants were invited to take part in a one-hour in-depth interview, in-person or by phone. Eligible participants were current or past members of an arthritis patient advisory board in a research centre. A semi-structured topic guide was used with prompts and probes to elicit detail about relationships with researchers. An iterative thematic analysis was conducted using constant comparison methods. A lens of relational ethics was found to highlight benefits and risks originating in emergent themes. Key elements of an ethical relationship, according to a relational ethics framework, include mutuality (encompassing deep understanding of each other’s values), choice and consideration of context.

Results: In 2015-16, 22 participants (aged between 26 and 68 years old) were recruited. Twenty-one (95%) were female, and 14 (64%) had at least one university degree. Of the 21 participants who reported, 12 (55%) had inflammatory arthritis, 5 (23%) had osteoarthritis, and 4 (18%) had both. Time spent as a patient partner ranged from 1 month to 10 years. Benefits and risks in patient-researcher relationships emerged across 2 distinct but related themes: 1) “Being Heard”: Participants described being heard as a mutual benefit in respectful patient-researcher relationships. Being heard involved having patient and researcher perspectives taken seriously and acted upon in the research process, which required patients and researchers to value different ways of knowing (e.g., lived experience, objective fact); 2) “Being with Supportive People”: Participants valued researchers who actively supported them to manage (actual and potential) negative physical and emotional impacts (e.g., fatigue, stress, uncertainty) of engaging in research in the context of their daily lives.

Conclusion: Findings make visible important values and behaviours for developing and maintaining ethical patient-researcher relationships, from the perspectives of patients with varying experiences of engaging in arthritis research. These values and behaviours can serve as a guide for researchers and patients who have chronic illness to anticipate and address benefits and risks that may arise in their engagement with each other. Our findings are a critical step to fostering everyday ethical practices of patient engagement in research that are anchored in patients’ perspectives.

ACR Meeting Abstracts - https://acrabstracts.org/abstract/partnering-in-research-maximizing-benefits-minimizing-risks-in-patient-researcher-relationships/