Full Professor, School of Nursing, Faculty of Health Sciences, uOttawa
Ontario HIV Treatment Network (OHTN) Research Chair in Black women’s health/HIV care
On November 17, 2020, the ISSP hosted a panel entitled Aligning Science, Society and Policy for the Grand Challenges of our Time at the Canadian Science Policy Conference. This blog is an adaptation of the author’s remarks.
Participatory action research is a partnership approach to research, where the researchers work collaboratively with interest groups in communities that are affected by the work and the findings. In the case of my research program, this methodology allows us to align science, society and policy imperatives to produce better health outcomes.
Social determinants of health are influenced by a number of factors, both at the systemic level and the individual level. Participatory action research builds capacity for communities and empowers them to understand their challenges for themselves, and in many cases, feel compelled to do something about the issues that they see. It gives people a voice and it mobilizes them for action. These three factors, education, investigation and action, are a powerful combination.
Engaging in this kind of work, I have seen just how impactful this approach has been in the Black community over the last decade. I have seen people engaged in research move on to community work or even run for local office. Once researchers see what is happening on the ground, they start asking themselves what they would do to change the situation. I see a lot of that kind of consciousness raising that motivates people to get involved.
Participatory action research brings diverse perspectives to the table to actually change the situation, to help people understand why certain things are the way they are and to take ownership of the research itself. It helps communities to understand the process, be part of the process from the beginning of the research design all the way to knowledge translation. I have been involved in projects where community members actually decided to write and stage a play, or sew a quilt based on the findings while the academics were busy presenting at conferences.
Participatory action research moves beyond simple research participation. Community members are fully integrated into the process of research. In the discipline of health, the process maximizes the number of perspectives that can bear on this particular issue. We must not only consider the etiology of a particular disease, but also examine it from a sociological perspective and a psychological perspective. Bringing all of these players together really highlights the many social determinants of our health, whether it's education, employment, income, housing. When we see somebody show up at the hospital, whether it's a simple physical condition, one infection, it helps us to really understand the myriad of issues and the social conditions that bring that person to the hospital. It also allows us to ask what the effects of a given policy may be on these social determinants. Health is so much more than physical illness.
For a more concrete example, I point to my work on HIV/AIDS in Ontario’s Black community. Despite accounting for only five percent of the province’s population, the Black community is overrepresented among those living in poverty and those living with HIV/AIDS. We brought in Black men from across the province to do concept mapping using the Groupwise mapping software. We presented our findings and asked them to use the findings as the basis to develop the best practice model for addressing HIV vulnerability among Black men in Ontario. It is essential to meaningfully mobilize and engage the community to generate tools that they would find effective and will be used to design and implement policies that they support.
Bringing that diversity and social inclusion is central to actually addressing our community health challenges. Participatory action research engages people not only in the research, but in the creation of knowledge and policy. You give people who have been forgotten or marginalized in past policy decisions a voice, a chance to create new knowledge and impact the implementation of that knowledge, a chance to spark a change in thinking or change the thinking of someone else, and a chance to contribute at different policy tables and engage the next community. To navigate the grand challenges of our time, participatory action will be vital.