Working for vs. Working with

Organizing, community-based participatory research and me

I’m one of those people that cringes whenever I hear of another “donate a cow” or “support a child” causes. I learned early on in my philanthropic/nonprofit-oriented life that those causes were notoriously bad at connecting people in need with things that what they actually need. As many people smarter than me have pointed out, these programs are structured to serve the needs of the donors much more than the needs of the recipients.

Within the ivory tower, similar concerns abound that from the dark days of Tuskegee to now, we still do a pretty poor job of creating research that serves minority communities rather than just generally making medications and health care programs that are best for our predominantly white, upper middle class lives. So, we do research that we call “community-based” and “participatory,” research that elects a board of community members to dictate what topics will be pursued and what interventions will be trialed. We approach community leaders, from pastors to business people, to try and get more community members involved and engaged. We hold focus groups to design “culturally-sensitive” curricula for health care topics and hold them in community centers or churches where the people will be best able to access them. In a lot of ways, these efforts are the future of community research, in health care and otherwise. They are revealing the obvious - that interventions work best when they are developed for the people that they are meant to serve - and they are developing best practices for implementing such community-tailored and culturally-competent interventions wherever you are.

And yet, I still wonder if this is enough.

In the end, the professor from the ivory tower will be picking issues (like diabetes) that matter the most to them or otherwise strike their intellectual fancy. The people of the community may work with them to help to achieve their mutual goals of health and diabetes control, but in the end of the day, when the academics have published all their papers and the grants have run out, the people will still be faced with the challenges of eating well and exercising in neighborhoods where jobs and green spaces are scarce and crime rates are out of control. More than anything, they will need the economic prosperity, equality and empowerment that a few health classes will not be able to provide.

Recently, I heard of a different model of community-based research, one rooted in the principles of organizing rather than the principles of advocacy. It calls for the researcher to engage the community on their own terms, to listen first before coming to them with all their ideas and preconceptions. It provides tools for the community to use, so that community members can use their own voices to advocate for changes in their community.This mode of engaging with the community is much more difficult and requires in some ways a more specialized knowledge than just general medical knowledge can achieve, but in some ways, perhaps, it can make more lasting changes by empowering the people that it aims to serve.