How patient-oriented research is transforming healthcare by redistributing power and addressing systemic inequities
In the traditional world of medical research, patients were often silent subjects—data points in a larger study whose personal experiences and insights remained untapped. Today, a revolutionary approach is transforming this dynamic: patient-oriented research (POR). This isn't just about studying patients; it's about partnering with them to shape the very questions, methods, and applications of health research.
Across Canada and beyond, this movement is gaining momentum, driven by the recognition that those with lived experience of illness offer invaluable expertise that can make research more relevant, equitable, and effective. However, as this approach becomes mainstream, a critical evolution is underway—pushing beyond mere participation toward truly redistributing power and addressing systemic inequities. This is the story of how a well-intentioned concept is maturing into a potent force for social justice in healthcare.
Patient-oriented research represents a fundamental shift in how we approach health studies. It moves patients from being passive "subjects" to active partners in the research process. According to the Canadian Institutes of Health Research (CIHR), this means "engaging patients, their caregivers, and families as partners in the research process" from beginning to end 3 .
This approach is rooted in moral, ethical, and political arguments that patients have a fundamental right to be engaged in research that affects their lives. It introduces democratic ideals into science, ensuring public funding for research serves the public interest and reflects the perspectives of those most affected by healthcare decisions 2 .
In 2011, Canada made a landmark commitment to this approach by launching the Strategy for Patient-Oriented Research (SPOR) 3 . A key component of SPOR is the SUpport for People and Patient-Oriented Research and Trials (SUPPORT) Units established across provinces and territories to promote and facilitate patient-oriented research 3 . This national infrastructure represents one of the most comprehensive implementations of POR principles worldwide.
Despite good intentions, the implementation of POR has revealed significant shortcomings. Survey data indicates that patient partners are predominantly older, White, and well-resourced women 1 . Most participate in roles with limited influence, such as reviewing documents or attending meetings, often leading to experiences of tokenism and questionable impact 1 .
Patient Partner Demographic Representation Chart
Few patient partners have been in partnerships where they genuinely shaped the direction, design, and interpretation of research 1 . This has led some critics to describe patient-oriented research as a "shiny new object"—visible engagement that leaves underlying power structures unchanged 1 .
of patient partners are women
report limited influence on research direction
feel their involvement was tokenistic
In response to these limitations, a more transformative approach has emerged: critical patient-oriented research (cPOR). This distinct framework repositions research as a relational and political process rooted in social justice 1 . Unlike traditional POR, cPOR explicitly emphasizes equity, shared governance, and structural critique across all research stages 1 .
Research is positioned as a deliberate, relationship-based process guided by those most affected by exclusion, with equity embedded in both process and outcomes 1 .
Patient partners participate in governance processes that set priorities, shape methods, and collaboratively determine outcomes while explicitly addressing power dynamics 1 .
Research explicitly situates inquiry within the systems that produce exclusion (such as racism, poverty, and colonialism) and directs attention toward addressing those structures 1 .
The Creating Safe Connections initiative provides a powerful example of cPOR principles in action. This multi-year project aimed to improve equitable access to lung cancer screening in Canada 1 .
The research team built on established community relationships to engage patient partners with lived experience of trauma, smoking, and marginalization 1 . Together, they identified priorities where structural exclusion is common and lived experience is essential: primary care access, smoking cessation, and stigmatizing clinical encounters 1 .
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 1 . These councils met both independently and jointly to set priorities, shape methods, and guide outputs—creating a model where power was made visible and deliberately rebalanced 1 .
A key output was a continuing medical education accredited e-learning module for primary care providers, designed to build competencies in trauma- and violence-informed care 1 . 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 1 .
"January 2008—that was when my world changed, when I transitioned from being a healthcare provider to a healthcare recipient."
Diagnosed with granulomatosis with polyangiitis, a rare autoimmune disease, Loo explains his motivation for becoming a patient partner: "How health research changed my life and the lives of so many other patients is why I am a patient partner" 3 .
Through his involvement, Loo discovered the many key roles people with lived experience can play in health research: "I learned that patients are not just passive subjects in health research, but we can be active partners, advocates, and decision makers, helping to shape research that directly addresses our needs" 3 .
Working within the system
Becoming a healthcare recipient
Traditional research participation
Engaging as research collaborator
Shaping research direction
Despite growing adoption, demonstrating the concrete impact of patient-oriented research remains challenging. A 2019 analysis noted that "many remain unconvinced of the merit of patient-oriented research without evidence of its positive impact on research or health outcomes" 2 .
Successful patient-oriented research requires specific approaches and resources. The table below outlines key components of the "scientist's toolkit" for effective partnerships:
| Tool/Resource | Function/Purpose |
|---|---|
| Dual Governance Structures | Creates separate and joint decision-making spaces for patient and institutional partners to redistribute power 1 . |
| Power Wheel Framework | A transformative tool to promote equity through spaces and places of patient engagement 1 . |
| GRIPP2 Reporting Tool | Guidance for Reporting Involvement of Patients and the Public ensures consistent documentation of engagement methods 2 . |
| Trauma-Informed Practices | Approaches that recognize and respond to the impact of trauma, creating safer engagement environments 1 . |
| Citizen Science Platforms | Secure web-based portals allowing patients to contribute lived experience data to generate relevant research questions 3 . |
| Patient Engagement Toolkit | Resources to support researchers in recruiting and training patient partners and collecting feedback 6 . |
As patient engagement in health research becomes standard practice, the imperative is to ensure it contributes meaningfully to how research is governed, conducted, and applied 1 . Critical patient-oriented research offers a promising path forward—one that embraces research as both a scientific and social process.
The evolution of patient-oriented research represents more than a methodological shift; it signals a transformation in who holds knowledge and authority in medicine. By continuing to refine these approaches, the research community moves closer to a model where diverse patient voices don't just inform studies but collectively steer the pursuit of health equity for all.
"This commentary exemplifies how a national health research strategy can foster alliances, where individuals within an organization encourage and empower each other to drive progress in health research."