Rethinking patient-oriented research | CMAJ
In my late teens, I worked in a foreign country with a community very different from mine. It was difficult, but I learned to love and appreciate the richness of the culture. This experience of immersion in a new culture led me to pursue a research-based master’s degree in medical anthropology, where I learned to think deeply and critically about the power structures inherent in the delivery of health care and value the subjective experiences of each individual. As an ethnographer, I learned the importance of human interaction and the nuances of cultural humility.
I pursued my goal of becoming a doctor. In medical school, I was re-educated in the tradition and culture of evidence-based medicine (EBM), which often clashed with my previous training in anthropology. In the traditional hierarchy of evidence as conceived by EBM, quantitative evidence like randomized controlled trials and cohort studies trump experiential knowledge imparted by methods like ethnography, which are often derided as anecdotal. I came to appreciate the value of both forms of knowledge and sought to marry them by subsequently pursuing a doctorate in health services research.
Around the time that I began my doctoral research training, the Canadian Institutes of Health Research launched their Strategy for Patient-Oriented Research (SPOR)1. It has become a hot topic in health research circles as targeted funding competitions have been launched. I fully agreed with the need for such a strategy, but the practice was often somewhat disappointing. It seemed to me that a researcher, myself included, could turn any project into patient-oriented research with a few patient signatures and maybe a consultation or two. However, the anthropologist in me longed for a more authentic and meaningful dialogue with people who had lived experience. I recognized the need for a fundamental shift in the power dynamics of the search enterprise.
During my postdoctoral fellowship, I sought to empower patients more in a research project, as partners rather than as participants or subjects. Research participants contribute data to projects, but patient partners contribute questions, design, conduct, interpretation, and dissemination of research. In community-based participatory research (CBPR), the patient partners who do this work are called co-researchers. I chose to conduct a CBPR study because it seemed to me that these often underused approaches would be more in line with the values behind SPOR than much of what I had seen and done before.
We faced a lot of adversity in the beginning. Many external organizations are unwilling to fund a project that does not have a research question; nevertheless, we obtained a small local grant from our institution. We then faced an ethics committee that had never seen such an open proposal and were unsure what to do with our protocol. This required many round trips and several modifications. Finally, some of our collaborators decided that the study was not feasible within the timeframe and resources available to us. However, others have agreed to take the risk of joining us on this atypical journey.
Once funding, ethics approval and collaborators were secured, logistical problems remained. Challenges included finding a friendly community space to host our group, finding food to share with co-researchers, and figuring out how to compensate people for their time, as well as questions about where to recruit co-researchers. potential researchers, how to train them, which methodologies to undertake and which questions to study.
Our efforts brought together a group of eight diverse, experienced and committed individuals who each had lived experience of diabetes and homelessness. We met with them weekly or bi-weekly, providing them with both diabetes education and research training. Over time, these individuals evolved from study participants to full-fledged co-investigators, who formed the Customers with Diabetes Action Committee (CDAC). Through respectful communication and deliberation, we found common ground and were able to work collaboratively toward a common goal: to improve the experience of people who are homeless and have diabetes.
During my research training, I had learned that success depended on meticulous planning and systematic research implementation. Giving up control didn’t come naturally and was very unsettling for me. On several occasions, I feared that our efforts would fail to materialize into a tangible product. I was afraid of not producing academic deliverables or not meeting the requirements of our funders. I even considered intervening. Over time, however, I learned to trust the process and the co-researchers. They showed me that their lived experience is as valuable as my own knowledge of theory, methods, physiology and drug therapy.
During our prioritization process, the group identified their top priority for diabetes management as the day-to-day issue of accessing, purchasing, and preparing healthy foods.2 This has initially was a blow to my ego, as I naively expected. that group members would prioritize their interactions with health care providers and the services we provide. It occurred to me that we may not be as important as we think.
The group completed a photovoice project where each co-researcher highlighted their experience of managing diabetes and homelessness, using a photograph and an accompanying story. clinical and research training. This unique approach to research was more valuable than anything I could contribute on my own.
CDAC’s work has been successful, resulting in peer-reviewed publications, media attention, and presentations at national and international conferences; co-investigators were recognized as authors and presenters.4 However, the impact the project had on those who participated in it appears to be the greatest success of all. Former CDAC members said they were not used to being treated as experts and that the CDAC experience was deeply meaningful. These stories, more than anything else, make this kind of college work worth my effort and stress.
My fellowship is over and the work of the CDAC is now complete, but the experience has cemented my commitment to true patient-oriented research and the need to give a meaningful voice to people with lived experience in our academic work. Building on the work we have done together, we have now established a similar group in Calgary to inform and guide our ongoing research program.
Although there are inherent challenges with CBPR, I am committed to continuing to prioritize the application of these approaches in each of my research projects and to making the voice of patients heard, from participants to co-investigators. I look forward to the many things that co-researchers, like those at CDAC, will still teach me.
Competing interests: David Campbell reports receiving support for the manuscript from the O’Brien Institute for Public Health, the University of Calgary, and Alberta Innovates, as well as grants from the Canadian Institutes of Health Research, Alberta Innovates, MSI Foundation, Alberta Health Services and the Social Sciences and Humanities Research Council (all payments to facility).
This article has been peer reviewed.
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