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“Nothing About Me, Without Me” – Patient Engagement in Research

Patient engagement in research or patient-oriented research refers to patients, their family members and other informal caregivers partaking in research as more than study participants but as members of the research team. For example, involving patients in some or all parts of the research process from deciding what topic is studied, to how the research is conducted to how the findings are presented and used.

Partnering with patients ensures that health research is both relevant and meaningful to the patient community. For example, in rheumatology, patients’ perspectives have been instrumental in broadening the scope of the research agenda to include more patient-relevant factors such as well-being, fatigue and sleep patterns. These are significant aspects of life with inflammatory forms of arthritis, yet until recently the topics were largely ignored or underrepresented in research and outcome measurement. This example depicts why patient engagement is so critical. If researchers do not work with patients how can they know what they are studying is relevant to the population that will be most affected by it? It is in this context that the saying “nothing about me, without me” applies so strongly. Other benefits of patient engagement include enhanced quality of research with more perspectives considered, meaningful role(s) for patients and greater involvement in their communities, co-learning between patient and researchers as well as getting important research findings to a broader audience. Overall, patient engagement is a promising way to improve healthcare services and patient experience.

Model of patient engagement in research by Clayon

Figure that summarizes the components of meaningful patient engagement in research from a patient perspective. Developed by the PIERS Project Team

Patient engagement has become increasingly popular over the last decade; each year, more health research funding organizations require that researchers work with patient partners. For example, at Arthritis Research Canada (ARC), there is the Arthritis Patient Advisory Board (APAB) comprised of volunteer advocates with arthritis who bring personal experience and arthritis knowledge to research that occurs at the institution. For many of our readers, involving those who are most affected by health research may seem like a no-brainer. But unfortunately, there is still a lot of health research conducted without patient involvement. In other cases, research may involve patients but in an ineffective or less meaningful way. One of the reasons for this may be that patient engagement in research is still a relatively new concept and few procedures and measures of evaluation are in place to guide researchers through the process of working with patients and evaluating its impact. For example, how do researchers meaningfully engage patients in research? How do we ensure patients contributions and opinions are being valued on the research team? How can patient engagement be measured and reported on? What guidelines should be followed when working with patients in a research setting? These are some of the questions that Dr. Clayon Hamilton and his research team have focused on over the past few years. Clayon is a Post-Doctoral Fellow and Trainee with Dr. Linda Li at Arthritis Research Canada, where he and his team are working to advance patient engagement in research, and tackle some of the problems that exist within the area. He recently co-created with patient research partners a tool aimed to guide researchers through the process of working with patients.

To learn more about Clayon’s research in patient engagement, view the links below:

Like Clayon, many other researchers and organizations such as the BC SUPPORT Unit and Strategy for Patient Oriented Research (SPOR) Evidence Alliance, are working hard to advance the field and provide support for patient partner research teams. In addition, just last week in Vancouver, there was the Knowledge Translation (KT) Canada’s Scientific Meeting, where patient engagement in research was a major theme. In an event called #Greek2Street, Arthritis Broadcast Network interviewed the KT Canada conference presenters and attendees to learn about KT and patient involvement in research.

While there is still a long way to go when it comes to patient engagement in research, we have confidence in the community of passionate researchers, health care professionals and patients who are dedicated to advancing the field and ensuring all health research is meaningful and relevant to those most affected by it.