Critical patient-oriented research: a fundamental shift in patient engagement

Key points

• Despite increasing expectations for patient engagement in health research, current practices often remain procedural and fail to shift power or address structural inequities.

• A fundamental shift in how engagement is conceptualized and practised is needed, repositioning research as a relational and political process rooted in social justice.

• Critical patient-oriented research is proposed as a distinct approach, advancing equity, redistributing power, and enhancing structural competence across the research process.

• This approach differs from traditional patient-oriented research and community-based participatory research through its institutional grounding and orientation toward transforming engagement from within health systems.

More than a decade after the launch of Canada’s Strategy for Patient-Oriented Research (SPOR), patient engagement is increasingly expected across the health research ecosystem. Institutional policies, funding requirements, and academic metrics commonly require patient involvement. However, engagement often remains procedural, emphasizing participation without meaningfully shifting power or decision-making authority.¹ We discuss why patient engagement in research needs to undergo a fundamental shift — one that moves beyond procedural inclusion toward approaches that redistribute power, legitimize structurally situated knowledge, and make research accountable to the communities it wishes to serve.

Survey data indicate that patient partners are predominantly older, White, and well-resourced women.² Most patient partners participate in roles with limited influence, such as reviewing documents or attending meetings, often leading to experiences of tokenism and questionable impact.^3,4 Few patient partners have been involved in a partnership in which they shaped the direction, design, and interpretation of research.^2–4 A partnership approach grounded in collective governance brings in diverse perspectives,⁵ surfaces overlooked questions, and strengthens the relevance and impact of research.⁶

In this context, patient-oriented research (POR) has been described as a “shiny new object,”⁷ where engagement is visible but the structures that shape whose voices matter and how decisions are made often remain unchanged. The implementation of SPOR in the field has largely led to engagement with individual patient partners, reflecting a broader health system orientation toward biomedical priorities and clinical outcomes.⁸ While these are important, this approach can obscure structural conditions — such as racism, poverty, and colonialism — that shape access to care and determine who benefits from research. Addressing these limitations calls for a rethinking of engagement itself — one that positions POR as a collective and political process grounded in accountability to those most affected by exclusion.

What is needed is not simply more engagement, but a reorientation that challenges the prevailing assumptions about how problems are defined, whose knowledge counts, and what forms of action are pursued. We suggest an approach to engagement grounded in social justice that advances health equity by redistributing power and positioning research as a relational, political practice oriented toward systems change, which we term critical patient-oriented research (cPOR).⁹ Critical patient-oriented research is distinct from both POR and community-based participatory research (CBPR). It shares POR’s commitment to involving patients in research, but is explicit in its emphasis on equity, shared governance, and structural critique across all stages of the research process. Community-based participatory research is a long-standing research approach grounded in principles of community leadership, co-ownership of knowledge, and action that is initiated and led by communities. While cPOR and CBPR are both rooted in traditions that view community as a site of resistance and transformation,¹⁰ cPOR is situated specifically within institutional patient engagement contexts and works from within health systems to transform how engagement is practised.

Three interrelated principles underpin a cPOR approach. First, engagement is equity centred. This positions research as a deliberate, relationship-based process grounded in trust and guided by those most affected by exclusion. Equity is embedded in both process and outcomes, from co-designing safe and accessible spaces to framing research as a mechanism for redistributing resources, visibility, and influence. This includes sustained commitments that extend beyond individual projects, and the mobilization of findings to support patient-identified priorities and action.

Second, cPOR is power redistributive. Patient partners participate in governance processes that set priorities, shape methods, and collaboratively determine and evaluate outcomes, while recognizing power as a central concern that must be surfaced and shared through intentional practices. This includes attention to the institutional constraints that shape engagement and requires researchers to critically reflect on their own social positions and influence.

Third, cPOR is structurally competent. This means cPOR explicitly situates research within the systems that produce exclusion and directs inquiry toward naming and addressing those structures through its priorities, partnerships, and methods. Structural competence enables engagement that is accountable to individual experience and to the social, political, and historical forces that shape it.

An example of these principles in action is Creating Safe Connections, a multi-year cPOR project funded through 4 peer-reviewed grants since 2020. In this project, a research team seeking to improve equitable access to lung cancer screening built on established community relationships to engage patient partners with lived or living experience of trauma, smoking, and marginalization. Together, they identified priorities related to primary care access, smoking cessation, and stigmatizing clinical encounters — areas where structural exclusion is common and lived experience is essential to guiding relevant inquiry. This equity-centred approach foregrounded trust building and co-learning between patient and institutional partners — including researchers, providers, and policy-makers.

To redistribute power, the team co-developed a dual governance structure: a research advisory council of patient partners and a research interest holder council of institutional partners.¹¹ The councils meet both independently and jointly to set priorities, shape methods, and guide outputs — operationalizing a governance model in which power is made visible,¹ reflected upon, and rebalanced throughout the research process. A key output is a continuing medical education accredited e-learning module for primary care providers, designed to build competencies in trauma- and violence-informed care (https://equiphealthcare.ca/online-courses/creating-safe-connections-practical-strategies-to-support-lung-cancer-screening/). Freely available in English and French, the module was co-developed by patient partners who also serve as educators and co-lead its implementation and evaluation. Lung cancer remains the leading cause of cancer-related death in Canada. While screening reduces mortality, structural barriers such as racism, stigma, and poverty continue to limit access for those most affected. The creators of this work responded by embedding structural competence into provider education and health systems practice, aiming to disrupt rather than reinforce existing barriers. The work has also generated ripple effects: council membership has expanded to include patient partners and policy actors across Canada, and the module is being implemented in clinical settings and training programs. Creating Safe Connections is also being adapted to promote inclusive cervical cancer screening — showing how cPOR can enable systems-level change grounded in equity, shared governance, and structural transformation.

As patient engagement in health research becomes standard, the imperative is to ensure it contributes meaningfully to how research is governed, conducted, and applied with a goal of improving health for all. Critical patient-oriented research offers a clear, practice-based approach to meet this need.