Exploring the Participatory Healthcare Research Summit as a Tool for Healthcare Research and Systems Improvement

There is an urgent need for innovative research methodologies that can help tackle complex healthcare issues. An important first step toward developing such methodologies entails finding ways to integrate the knowledge and expertise of actors within healthcare, including clinicians, health administrators, researchers and patients/individuals with lived experience. An under-explored opportunity to do so exists in what we term the “Participatory Healthcare Research Summit:” a day-long participatory knowledge sharing activity bringing together diverse interest-holders to better understand healthcare service needs and avenues for improvement. Our experience comes from holding a Participatory Healthcare Research Summit for pediatric gender identity-related care in Montréal, Canada. This event offered an opportunity for healthcare providers, health administrators, researchers, community organizations, and patient/parent-partners to collectively provide direction to improve care. In this article, we provide a reflection as the event’s organizing committee on the opportunities and limitations of Participatory Healthcare Research Summits for integrating various forms of knowledge into healthcare research. To generate this reflection, we conducted a series of smaller group discussions, then applied the lens of epistemic injustice to the resulting content. We identified three key tensions of the event when it comes to meaningful knowledge integration: 1) (Re)assembling the puzzle, 2) Power and social dynamics, and 3) Time as a limitation and opportunity. Our reflection highlights the potential for Participatory Healthcare Research Summits as healthcare research tools, particularly through their ability to gather diverse sources of expertise. We finish with recommendations for the relevance of using this methodology to conduct research in other complex healthcare fields.