In our last post, we interviewed Risa Wilkerson of Active Living By Design who’ll be running a breakout on day two of our May 15-16 symposium, Community Agency & Health. In this post, we speak with Mark L Wieland of Mayo Clinic and Rochester Healthy Community Partnership (RHCP) who’ll be running a parallel breakout entitled, ‘Using Participatory Research & Evaluation’.
Pritpal S Tamber: Hi Mark. Let’s start with what Rochester Healthy Community Partnership is.
Mark L Wieland: RHCP is a community-academic partnership in Rochester, Minnesota, with a mission to promote health and well-being amongst the community in Rochester through community-based participatory research (CBPR), education, and civic engagement. The aim is to achieve health equity.
Pritpal: Explain what ‘CBPR’ is.
Mark: Community-based participatory research is a way for residents and academic partners to collaboratively investigate health issues within a community. All parties have an equitable relationship through all phases of the process. The approach helps health professionals to understand culturally pertinent issues that influence health-related behaviors. With that understanding, they, together with residents, are able to develop interventions that address the social determinants of health. The approach also builds community capacity.
Pritpal: Interesting. Risa talked about ‘community capacity’ too. So, give us some examples of how you’ve used CBPR to address local health issues.
Mark: We’ve used the approach to inform interventions for people with tuberculosis and cardiovascular disease and for children with obesity. In tuberculosis, we were able to develop an effective, sustainable, community-owned TB prevention and control program that disrupted the transmission of the disease in socially marginalized groups. In cardiovascular disease, we have been able to lower the risk among immigrants and refugee families in Minnesota who are living in poverty. And in childhood obesity, we co-created a prevention program aimed at-risk youth delivered through after-school programs.
Pritpal: Nice work. It’s easy to say things like ‘culturally pertinent’ and ‘community-owned’ but how does this happen in practice?
Mark: Through CBPR, every phase of the research and programming is done by the residents and academic partners together. Working this way forces you to face, and eventually try to address, the inherent complexity of improving a community’s health. The traditional approach to health, which tends to be top-down and reductionist, cannot do this. To help us, we used the approach to develop some ‘digital stories’ by immigrants and refugees around chronic diseases and their management. It made it possible for the community to inform health care practice, rather than the other way around.
Pritpal: Fascinating stuff. I know you recently turned the CBPR lens on yourself. Tell us about that.
Mark: We’d been using CBPR in the Partnership to address health-related issues but we decided it was time to use it to evaluate the Partnership itself. We called in colleagues from the University of New Mexico Center for Participatory Research to run the process. They found that the participatory process is key, it’s our most important product. This is often hard for people to grasp because we’re used to interventions being the product. We learnt that our process is the product.
Pritpal: Yes, health seems to be one sector that fails to grasp the importance of process. It’s obsessed with interventions and outcomes without fully valuing the processes that inform them.
Mark: Right. We also learnt that to date we’ve been relatively narrow in our focus. We’ve pursued bio-medical outcomes but, when it comes to health, residents think more broadly than that. This process is informing our plans, which are likely to include opportunities outside of bio-medicine. The good thing is that, having adopted a participatory approach to our own evaluation, our in-draft plans have a level of authenticity that would not have been generated by traditional program evaluation.
Pritpal: So residents feel a greater sense of ownership over the Partnership?
Mark: Yes, but what we’ve learnt is for that to be genuine the balance of power should fundamentally change. Some power – not just resource – has to be shared between health care and residents. It’s a necessary condition for meaningful dialogue and change. We’ve learnt that when communities are leading the way, outcomes of policy and sustainability become much more front and center.
Pritpal: What other fundamental issues do you see?
Mark: Bio-medical constructs and frameworks are getting in the way. What I mean by that is through approaches like CBPR we’re seeing how health-related data and insights are a door to social change but the work we see needs doing has to walk the line between being bio-medical by name but social by structure. And, of course, it’s not just a ‘name’. Our bio-medical constructs and frameworks overly-define processes and outcomes making it (almost) impossible to do what’s needed.
Pritpal: We’re both doctors so we know that medical school didn’t intentionally teach us to get in the way. How else are you seeing health institutions unintentionally be a problem?
Mark: Well-meaning institutional norms can stifle the power of emergence, the idea that new ideas can emerge through the process of doing the work. In bio-medicine, such as in how funders or institutional review boards operate, we expect to know interventions and intended outcomes upfront. This non-malleable approach is inappropriate for community-engaged work, not least because it erodes the authenticity of any partnership we in health care might seek with community residents.
Pritpal: And you’ll be sharing all of these insights through your breakout at the symposium, I know. Leave us with a final thought.
Mark: That to address many of the seemingly intractable health issues we face today we need to trust in the power of process above any specific intervention or intended outcomes.