Patient-identified priorities for successful partnerships in patient-oriented research

Abstract

Albertans4HealthResearch, supported by the Alberta Strategy for Patient-Oriented Research Patient Engagement Team, hosted a virtual round table discussion to develop a list of considerations for successful partnerships in patient-oriented research. The group, which consists of active patient partners across the Canadian province of Alberta and some research staff engaged in patient-oriented research, considered advice for academic researchers on how to best partner with patients and community members on health research projects. The group identified four main themes, aligned with the national strategy for patient-oriented research (SPOR) patient engagement framework, highlighting important considerations for researchers from the patient perspective, providing practical ways to implement SPOR’s key principles: inclusiveness, support, mutual respect, and co-building. This commentary considers the process behind this engagement exercise and offers advice directly from active patient research partners on how to fulfill the operational patient engagement mandate. Academic research teams can use this guidance when considering how to work together with patient partners and community members.

The League: A person‐centred approach to the development of social robotics for paediatric anxiety

“…In addition to questions of language, the topic of how best to involve lived experience partners in work such as the project described above -how to recognize their expertise and contributions while respecting potential vulnerability related to mental health history-has implications for choices around institutional ethics approval. 44,45 If patient collaborators are considered as equivalent to professional peers, then obtaining approval from a Behavioural Research Ethics Board, Institutional Review Board or similar body to engage with them as human subjects is inappropriate. However, they may also be considered vulnerable to harms as a result of their engagement in the research process, especially if they are young or being asked to discuss their physical or mental health history.…”

Co-learning commentary: a patient partner perspective in mental health care research

“…2 Patient Partner, Victoria, Canada. 3 School of Population and Public Health, University of British Columbia (UBC), Vancouver, BC, Canada. 4 • thorough peer review by experienced researchers in your field…”

“…Funded by the Canadian Institutes for Health Research, the national Strategy for Patient Oriented Research [ 2 ] has pushed the frontiers of patient engagement for both researchers and the public. However, there are few accounts about how to do patient engagement successfully, and almost none of these are written by patient partners themselves [ 3 ]. We are patient partners—or persons with lived experience—on one such research team who can share insights and lessons learned from partnering with researchers in mental health care research.…”

Co‐building a training programme to facilitate patient, family and community partnership on research grants: A patient‐oriented research project

“…Support is defined as adequate support and flexibility for patient partners to ensure that they can contribute to health research projects and activities in equitable and meaningful ways 1,16 . Support refers to the creation of a safe environment that promotes equitable and honest interactions, cultural responsiveness, appropriate training, education and financial compensation for patient partner contributions.…”

“…Diversity in research teams and research projects can lead to more universally appropriate and applicable research results 14–16 . There can also be inherent challenges in working together when team members reflect multiple perspectives, identities, skill sets and approaches to learning.…”