Maryam Kebbe is a CIHR Postdoctoral Research Fellow at the Pennington Biomedical Research Center at Louisiana State University.
Diane Aubin recently retired from her position as Executive Director of the Alberta Strategy for Patient-Oriented Research SUPPORT Unit.
Engaging patients in health research might seem fairly novel, but the idea of engaging the people who are most affected by research has been around for over 50 years as “participatory action research” or “community-based participatory research.” The reasoning behind this way of doing research was that the community has a right to express why and how research was conducted, and to ensure the research led to change or improvement in the community. In essence, the research was not on people, but with people.
What is relatively new is applying these same principles to health research. In Canada, the CIHR began promoting this approach to research in 2015 through its Strategy for Patient-Oriented Research (SPOR), defining patient-oriented research (POR) as “a continuum of research that engages patients as partners, focusses on patient-identified priorities and improves patient outcomes.”
Whether the research topic is understanding factors that influence cancer care decisions among Indigenous people, helping patients with chronic kidney disease and diabetes make decisions about their treatment, or designing a patient-centered tool to prevent and manage pediatric obesity, the premise of POR is to shift traditional research from a top-down into a bottom-up approach. The driver behind this approach was that we have a moral and ethical obligation as researchers to listen to patients and acknowledge the value and experience they bring.
POR is a logical step in the evolution of health research to some, but it requires a cultural shift for many health researchers who are accustomed to having full control of their research and only interacting with patients as participants in their studies. The momentum for POR is increasing, however, especially since funding agencies and publishers increasingly expect patient engagement in research studies.
Unsurprisingly, the definition and approach for POR is evolving. Where the focus at first was on patient engagement, this has expanded to include engagement of several stakeholders – such as policy-makers, decision-makers, and clinicians – to increase opportunities for implementing results into practice. Most recently, CIHR has integrated the concept of learning health systems (LHS) into its SPOR program.
Simply stated, a LHS enables continuous learning and improvement across the health system by driving the results of research into practice. It is based on a learning cycle of (i) using evidence or data from research to create knowledge or D2K; (ii) using this knowledge to inform new practices or performance (K2P); and (iii) evaluating the new practices and using those data to inform future practice (P2D).
This expanded view of POR aims to reach beyond engaging the community or patients. Specifically, it seeks evidence-based processes to implement the findings of research into practice and ensure patients reap the benefits of health research. This shift is an important step forward in the evolution of POR, and an important step towards helping researchers make a difference to health outcomes and health systems.
For progress to occur in this continuously expanding field of research, a more comprehensive definition needs to be established. We propose a definition that incorporates principles of both patient engagement and a learning health system:
Patient-oriented research is a health research approach that (i) engages relevant stakeholders, including patients, clinicians, policy-makers, and decision-makers to (ii) improve outcomes that are important to patients by (iii) embedding the research into a learning health system that ensures findings of the research are implemented in practice.
Pertaining to research that has value beyond academia, everything old is new again. The POR approach has built on the old ways of community-based research by promoting the importance of starting with the community and ensuring research could be relevant, measurable, and impactful on communities’ health through practical, innovative, and evidence-based knowledge.