Tuesday, November 23, 2010
Was the Tuskegee Experiment CBPR?

I invite you to watch Dr. William Carter Jenkins’ address to the APHA annual meeting, and reflect with me whether Dr. Jenkins assertion that the Tuskegee Experiment met all the criteria for participatory research.

I have a lot of respect for Dr. Jenkins and his attention to history. Understanding history is critical to developing a vision for social, political, and economic chance, and to effectively pursue that vision.

Dr. Jenkins listed many criteria for community involvement, including cultural competence, community advice, community consent, and community origination and details the ways in which Tuskegee met these criteria. And it does emphasize some questions that practitioners have been wrestling with for some time. How do we define community? Can organizations stand in as representative decision-makers for whole communities? This is very convenient for other institutions looking to partner, but is it fundamentally participatory or ethical? To what extent does engaging individuals from under-represented groups in research or public health simply constitute co-optation of community models of action and knowing to institutional models of action and knowing?

I thank Dr. Jenkins for raising these critical questions, but strongly take issue with his notion that the Tuskegee Experiment can qualify for participatory research. It does not meet two basic criteria: 1) the experiment utterly failed to reflect the values and interests of the community members, and 2) the experiment was not designed and failed to lead to action to promote the well-being of the involved community. Community values and action orientation underly all fundamentally participatory research.

I agree with Dr. Jenkins that participatory research is not a panacea, but it is a vital step toward both democratizing science and toward translating science to policy (or making science more relevant to policy). His perception that the Tuskegee Experiment meets the criteria for CBPR, gives me pause when I think about my work with scientists and communities. I have seen the value in baby-stepping researchers toward community-driven research. Collaboration is both an orientation and a skill set. Some people who have the orientation and don’t yet have the skills can be mistaken for inauthentic or uncommitted. But there are also countless examples of co-optation, exploitation and simple abuse of community members and organizations by academic and governmental institutions. There is a huge range of practice out there. What is most useful is to think about the whole spectrum and where we lie on that spectrum at any given time. How does our practice match our goals?

But let us be clear on one point: The Tuskegee Experiment was not participatory research.

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Saturday, October 30, 2010
We are struggling, we are winning.

This week I spoke at the opening of the Faces of Urban Health Forum here in New York.  It was a space intended for communities and their partners to focus on strategies to address health inequity.  It was a powerful experience for those involved, mainly because space of this nature is very hard to find.  I made my case about how we should all be partnering with the intention of addressing systems-level change. Then I was thrilled to hear about the current work of the Harlem Community Academic Partnership (HCAP).

I used to work with HCAP seven years ago, and amazingly they are still not just in partnership, but still working on the seemingly intractable policy barriers to re-entry for people coming home from jail and prison.  Sister Mary Nerney presented some of the (unfunded) research that the policy work group was doing into the attitudes of residents of public housing toward people who have been incarcerated.  This research is amazingly well conceived to both have a long-term impact on policy and to possibly smooth the road of people coming home right now.  Living in public housing after being convicted of a felony is against regulations, however many people do return to the projects after jail.  In fact, 40% of the public housing residents in in the focus groups for this research were formally incarcerated.  Once the system of how to get and stay into public housing is better understood, service providers working with people coming home can better facilitate that process. At the same time, a clear case for changing the policy can be laid out for policymakers.

Sister Mary mentioned that 10 years ago, when we started the policy work group, we tried for and won some easy victories.  This was such an important perspective to hear.  Because Sister Mary is now working on housing for people coming home from jail and prison, which is an extremely hard nut to crack, she feels like the other policies were easy in comparison.  I reminded her that they were not.

In fact, in the three years I spent working with HCAP we saw exactly zero policy change.  However, we contributed to a groundswell of activity around criminal justice reform, and were able to raise the profile of community reintegration as a public health issue.  This lead in the following years to many changes in policy from Medicaid status of releasees to changes in the phone rates from prison to discharge planning.  These were in fact large and hard won victories that impacted tens of thousands of people.

It is so important when doing policy work to really savor victories, while at the same time demanding more.  What many of us in public health work or social justice work seek is transformative change.  But as Obama said on the Daily Show, much transformative change started with incrementalism.  Programs for widows and orphans grew into a safety net (albeit one with many holes).  Civil rights continues to progress and regress in fits and starts.  And yet, we are undeniably better off than we were 100 years ago.

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Sunday, September 26, 2010
Cost-benefit analysis for healthy policy

I recently attended a day of cost-benefit analysis sponsored by the Institute for Policy Integrity at NYU.  I saw an analysis of residential oil-burning boilers that was used to successfully advocate for a change in regulation.  As a result New york will be moving to cleaner grades of oil across the board in the next year.  It required 9-months of work by at least one economist, which is a small price to pay for all the potential lives saved.

People have strong reactions to cost-benefit analysis.  For those who advocate for human rights or social justice, the idea of placing a dollar value on a human life or the life of an animal is anathema.  First of all, this is a bit reductionist, because all cost-benefit analysis does not involve the valuation of life.  However, the point made by  Dean Revesz, Director of IPI, was that you can note your objections to cost-benefit analysis, but you should get in on the game, because this is how a lot of decisions are made.  Cost-benefit analysis is particularly useful in the environmental field and on the federal level for the simple reason that environmental regulations require the preparation of a cost-benefit analysis.  The effected industries prepare and present them, and effected communities and concerned citizens should too.

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Wednesday, June 23, 2010
The Art of Participatory Leadership

I went to a workshop with the Art of Hosting folks last week entitled the Art of Participatory Leadership. Upon reflection I think it is interesting that some of the practitioners are moving from the nuetral language of calling, hosting, and conversing to the L word.

Leadership. It is a concept I struggle with in my work. To lead suggests a direction, a goal, a set of values. Yet many of us involved in collaboration shy away from leadership, worrying that to lead is antithetical to the concept of collaboration. Some of us attempt to offer our skills and resources to communities, because we believe that community-driven solutions work better. “We have tools to help you with your goals,” we say. At least that is often where I am coming from. Of course all of our tools and processes are laden with values. To assert no values is a value in itself.

The Art of Hosting folks practice a wide range of participatory tools that are very much in line with the principles of CBPR and other participatory methodologies. The do this in the service of changing the world for the better. Moving toward transformative rather than incremental change.

I think their move from hosting to leadership, might stem from the insight that there are specific ideas that they value and they want to promote those values through the processes they share. I have had that insight recently. When in Omaha this winter I was challenged by a workshop participant that the policy analysis methods I was teaching could be used for anything – good or bad. That is a really important criticism.

So in my work I am thinking about two questions:

1) How to design a collaborative process for policy design and advocacy that is a true synthesis of traditional policy design processes and participatory action strategies?

2) How to bring a discussion of inequality, and race and gender in particular, into this work?

These are the questions that I want to lead others to think about. The processes introduced by the Art of Hosting folks gave me a chance to put these questions to others. That is the genius of it. Getting people to think on your hard questions, while you help them think on theirs. Inspiring each other to work together in things we, collectively, care about. You should check them out.

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