When I was a teenager going to the respirology clinic for my asthma, I was aware there was research being done. I participated in a few research projects as a participant. I thought it was important to do research and to ask patients’ opinions of their own condition to help improve health services. I often did not have the same opinion as my parents and so I thought my voice needed to be heard. I had to advocate for myself in clinical consultations, but I did not realize that I could advocate for patients like me by participating in research. I also wasn’t aware of the full potential of engaging patients in research as more than just participants. As participants, we are asked to sign an informed consent form, follow the procedures outlined by the researchers, and then maybe if we are lucky, we hear about the results of the research a few years later.
Being an asthma patient had a huge impact on my life both personally, as well as in my career. I chose to go into the healthcare field because of respiratory technicians, nurses and physicians who were so kind and listened to me; I wanted to be like them. I also met with health care providers who didn’t listen to me and just looked at my x-rays and tests, and told me how I was supposed to feel. These experiences pushed me to go into research to try to help young people with chronic conditions manage their health and symptoms.
When starting in research, I became a member of the Canadian Arthritis Network, one of the Networks Centres of Excellence funded by the Canadian Institutes of Health Research (CIHR). In this network, patients reviewed award and grant applications to decide which projects should be funded. They also presented their personal challenges and experiences at conferences to help researchers understand their perspectives. Patients had more influence than I had ever seen before; they contributed to setting research priorities, which helped ensure that research was relevant to them.
At the time, I didn’t realize how special and unique this was. I didn’t know that many research networks did not include patients. I embraced that model and tried to engage patients in my research. I met incredible patient partners who spoke their minds and advocated for patients’ rights, even if the balance of power is often held by clinicians and researchers. They showed a lot of courage, and I was inspired by them.
Since then, patient engagement has come a long way. The CIHR Strategy for Patient-Oriented Research was established and has a Patient Engagement Framework (1). This framework describes patient engagement as the “meaningful and active collaboration in governance, priority setting, conducting research and knowledge translation”. Although progress has been made, we still need to improve how research teams engage patient partners and compensate them for their work (2). Also, if not done properly, it can be difficult and cause additional stress for patients who often experience powerlessness in their interactions with the health care system. Patients often need a “thick skin” to stand by their beliefs when talking to clinicians and researchers who think they are “the” experts.
In our research, we have a team of patient partners who are working with us to ensure that the interactive web-based patient decision aid for pain management is relevant for young people with juvenile arthritis and their families (3). Patient partners act as advisors on research, providing input on the decision aid, attending research team meetings, and ensuring our research is disseminated to youth with JIA through social media platforms like Instagram. We have evaluated our engagement practices to ensure patient partners feel heard, and to make changes as to how the research team interacts with them. Patient partners have reported many benefits; they develop new skills, meet other people with JIA, and come to recognize the value and importance of patient perspectives in research.
As I reflect on my life experiences with asthma, I realize that I never achieved this. Maybe it was a missed opportunity. Maybe I could have contributed to research in a different way, by bringing my own personal experience to benefit research that will ultimately help others like me. What I didn’t achieve, though, I will help our patient partners do! And they will continue to teach me and make our research more meaningful and relevant to youth with rheumatic conditions.
Interested in learning more about becoming involved in research as a patient partner or learning about our research and how we engage patient partners? Check out these resources:
(2) Richards, D.P., Cobey, K.D., Proulx, L. et al. Identifying potential barriers and solutions to patient partner compensation (payment) in research. Res Involv Engagem 8, 7 (2022). https://doi.org/10.1186/s40900-022-00341-1
(3) Toupin-April K, Huber AM, Duffy CM, Proulx L, Morgan EM, Cohen JS, et al. Development and Acceptability of a Patient Decision Aid for Pain Management in Juvenile Idiopathic Arthritis: The JIA Option Map. Patient - Patient-Centered Outcomes Res. 2020;13(6):719–28.