Meaningful Engagement of Patient Advisors in Research: Towards Mutually Beneficial Relationships

Abstract

Patient engagement in research improves trustworthiness of the research findings, increases relevance, and ensures designs include the most meaningful outcomes for patients living with targeted health conditions. The Patient Centered Outcomes Research Institute (PCORI) requires engagement of patient stakeholders. There is limited description of both the context and the processes used to engage patients effectively. This paper discusses engagement activities, roles and responsibilities, value of a Patient Advisory Board (PAB), and lessons learned. Data include program notes, research team reflections, PCORI reporting, and an advisor survey. Facilitators of meaningful engagement included creating a learning community, co-defining clear roles, reimbursing advisors, establishing clear avenues for communication, and welcoming unique contributions. Lessons learned were the value of time, the importance of building trust, and the benefits of diverse perspectives. The approach to meaningful engagement of patient advisors in research has the potential to enhance the relevance and usefulness of research for improving lives.

Different in so many ways: Exploring consumer, health service staff, and academic partnerships in a research advisory group through rapid ethnography

“…The meaningful deliberations and interactions as peers between consumers, health‐care staff, and academic researchers were commended as a novel experience, despite all RAG members having been involved in other CCI work, albeit mainly in QI rather than research. These findings align with previous contentions that authentic CCI in research is not widespread and that RAGs are an effective strategy to foster mutually beneficial collaboration (Chan et al, 2021 ; Young et al, 2021 ). The combination of stakeholders was a strength.…”

“…In keeping with the recommendations above, a knowledge dissemination and translation plan for this RAG evaluation has been developed to ensure that specific strategies are used to share findings and recommendations with consumers. These benefits offset the increased time needed for the RAG, which concurs with other authors (Chan et al, 2021 ; Islam et al, 2021 ; Young et al, 2021 ). Although a resource‐intensive evaluation of all RAGs may not be realistic, at a minimum, critical group reflection ensures ongoing learning and improvement (Kelly et al, 2017 ; Pavarini et al, 2019 ) and may lead to enhanced consumer leadership as demonstrated in occupational therapy mental health research (Honey et al, 2019 ).…”

“…RAG participation had immediate and ongoing benefits, including enjoyment, increased confidence to contribute to research, co‐learning, networking, and enhanced partnership capabilities as found by occupational therapy researchers (Haywood et al, 2019 ; Honey et al, 2019 ) and others (Gordon et al, 2018 ; Musson et al, 2019 ; Young et al, 2021 ). The many impacts of RAG deliberations on the eDelphi study were clear across the research cycle, including in the planning of knowledge dissemination and translation.…”

“…True partnerships involve bidirectional information flow and active consumer collaboration (Bird et al, 2020 ). Engagement of other research stakeholders such as clinicians, policy experts, and funding decision makers is also important (Young et al, 2021 ).…”

“…Research advisory groups (RAGs) are a common way to engage consumers, the community, and other stakeholders to influence research prioritisation and decision making (Isham et al, 2019 ; Kelly et al, 2017 ; Young et al, 2021 ). The role of a RAG is to ‘question and advise’ so that research is high quality and consumer focussed (Gordon et al, 2018 ).…”