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.

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.

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.

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.

1) Thinking about how to integrate a rather academic approach to policy analysis to an Alinsky-style approach to policy change.

2) How to keep inequality generally, and race specifically, at the center of what we do – or at the very least on the table.

I will be running a pre-conference session on May 12th in the afternoon focusing on policy analysis. I will also facilitate a session on cost-benefit analysis on Friday morning. Otherwise fine me at the thrasher sessions on Thursday and Saturday, as well as the breakfast roundtable on Saturday.

Hope I get a chance to connect face-to-face with you at the conference. For details go to http://www.ccph.info/.

See you in Portland!

Their Motto: Girls do what they have to do to survive.
Website: www.youarepriceless.org
Values: Self-care, empowerment, harm reduction, social justice, and popular education.

Not coincidentally, these well -chosen values would work well to guide a community academic partnership. YWEP’s research was conducted over the course of a couple of years with design help from adult allies. (Scientists). They were able to reach 205 women and girls with a combination of street surveys, interviews, and focus groups. About half of the women and girls in the YWEP study were mothers or pregnant at the time of the research.

One of their research findings was that individual violence was magnified by individual violence. The individual violence was from family, pimps, johns, other community members. The institutional violence came from systems designed to help and protect their community. The criminal justice, child welfare, the hospital/public health systems, and other social services. They gathered many stories. Stories of girls being abused in foster care, then having their babies taken away from them and put back into that same abusive system. Stories of police demanding sex in order to let girls go and then arresting them anyway. Stories of hospital workers turning away girls because they admitted to being in the sex trade or because they were transgender or queer.

After conducting this research, YWEP concluded that they should continue to work on resistance to oppression and resiliance in their community without engaging the systems that were failing them. I have a lot of respect for these strong, intellegent, resiliant girls, and when they tell me that their resources are better spent working in their own community than on the systems surrounding it, I respect that decision. Although I did offer to help them work on system-level change any time they feel ready to do that.

The total rejection of systems seems a bit extreme, but the reality is that right now in America there are so many systems that are failing the communities they serve, and many individuals who are turning their backs on those systems – some practicing resilience and resistance like the YWEP girls and some simply hopeless. These system failures are expensive, tragic, and unjust. So let’s think about how community-academic partnerships can combine evidence-based policy with organized constituencies to effect changes in those systems.

All that is the backstory of why I was spending so much time observing an intensive care unit. I noticed something very interesting there. This unit had a nursing to patient ratio of 1 to 2; 1 to 3 very rarely during rush times. The nurses are highly trained, and mostly very experienced. They were extremely attentive. The first few days I felt weird asking people with years of education, training, and experience to get more ice. But one day it suddenly hit me. In the intensive care unit, everything is important. From family involvement to fluid intake, everything contributes to marginal improvement or marginal decline.

And because people in intensive care are, almost by definition, not out of the woods, each of these pieces of information contribute to the whole picture that can literally mean life or death to the patient.

So, in this hospital there are no nurses aides in intensive care. I didn’t ask about this, but here is my theory. I don’t think it is that there aren’t lots of things that nurses aides are perfectly qualified to help with in the ICU. I think that the hospital has determined that it is too risky to rely on information exchange with these critical patients. That having one person watching, recording, and ministering to each patient improves their changes of survival.

Now on to my insight about what this means for the work we do in partnership to design and promote more effective policies. For the most part, we operate in an environment in which the stakes are high – because we seek to improve health in our communities and sometimes that need is high – but the activities are longterm – so burn out is a serious risk if we don’t pace ourselves. And almost all of us are working on other things. So here are a few things to think about.

1) Sometimes a few individuals (ideally 2 or 3) will have to take on the roles of the ICU nurse, meaning they will have to be the ones carefully watching, recording, communicating, and making decisions. These times usually are short-term and revolve around change activities like public actions, negotiations, and political campaigns. In partnership, careful attention needs to be paid to who those people are, and how they are chosen.

If the intense period drags on, or is expected to be sustained (as during ballot initiative campaigns), then a mechanism must be put in place to replenish the members of this group with reinforcements. This is part of the reason why good recording is so important. It allows new people to understand what is happening. If possible rotate out one individual at a time.

If face-to-face negotiation is the method, it is pretty important to keep the negotiating team consistent. This helps both with rapport, and with continuity of understanding. So much of face-to-face negotiating is non-verbal, picked up as feelings. Those intangibles can be difficult to express adequately to people who were not present.

2) Our work is long-term. The analogy to the ICU patient continues here as well. Once out of ICU recovery continues. Once a victory, whether negotiated or electoral, is secured, the partnership moves on to an examination of the implementation. For both the patient and the partnership this can be a surprisingly frustrating time. Not always, but often, recovery and policy implementation share the traits of being slower and less complete than we would like. It helps to be emotionally prepared for this.

Wishing all a personally and politically healthy new year.

This is a great articulation of the evolving field of community-engaged research. It is very useful for those approaching partners to understand which type of partnership they want. It is also a great way to reflect upon existing partnerships. Do all the partners you work with have clarity about where your partnership lies on this spectrum? If not, why not?

A couple of points:

1) If you want to do community-driven research, it is critical that the community control the money involved. So funders, interested in promoting community-driven solutions, should look at models that fund CBOs directly, with academic partners serving a consultancy role.

2) Dr. Kimmel also mentioned that communities can readily do policy work without the need to conduct original research. As readers of this blog, or attendees of any of my workshops know. I agree with this point. Community-driven and community-based research should serve the interests of the community, therefore they should be designed to answer questions that can lead directly to changes (often targeting the systems level) that will improve health and well-being.

Shawn Kimmel is the Founding Director of the Center for Community Driven Policy in Detroit. I very much look forward to his future work and insights.

This story got me to thinking about the relational value of working at the community level. This researcher was not a CBPR researcher, nor are they interested in changing policy per se. Think of what an impact this research could have if it was driven by the community and seeking structural-level changes. What impact would it have to make store owners more aware of the needs of customer’s in wheelchairs? What impact would it have to make other community members aware of the needs of their neighbors in wheelchairs? I actually spent a year in a wheelchair when I was 19, so I have some experience navigating both the structural and social barriers faced when one is in a wheelchair. For me it was rather isolating.

So all this is to say, when I am thinking about solutions to problems like these, I often think about regulation – mandating curb cuts, accessable public places, accessable bathrooms. The architecture of our lives can exclude or include and that is critical. At the same time, I think we are missing some of the added value of community when we focus soley on regulation to eliminate barriers. Today when you go to your neighborhood, notice one norm that is inclusive and healthy. Think about the value that norm adds to your well-being. Write in an example on the blog.

I took this photo a few blocks from my house a couple of weeks ago. It is a picture of a fabric store window with a generic “help wanted” sign displayed. Below the sign a small piece of cardboard has been added with the word “male.”

The federal policy against employment discrimination is more than 40 years old, yet employment discrimination is still practiced, often more covertly than the above example. The above sign raises the following often discussed questions:

1) How do we define policy and practice?

Can this sign be taken as evidence of a store policy? Because it has been written on cardboard, does that somehow formalize it? Is the distinction between policy and practice important?

Practice can be just as entrenched as policy, as those of you who have tried to change practice in institutional settings may have observed. What is different about it is that it is not supported by written documentation, and may not be a reflection of the conscious decisions of an individual or group.

Practice is often wide-spread in an organization because it is transmitted through cultural norms. We often do what we see done without a great deal of thought. There is an efficiency in mimicry. The behavior that becomes practice may not be efficient, but from the perspective of functioning in an existing system, mimicry will get you by.

My judgement, certainly open to criticism, is that the sign represents the policy of employment discrimination in the store. Simply by taking the time to make the little cardboard sign, the owner is making explicit their choice to seek male employees.

A written policy like the one in the store window is self-evident. When you are dealing with practice, sometimes the first step is to simply document the practice. In both cases, you need to understand the underlying rational for the policy or practice. What motivated the decision-maker(s) to put the policy in place? What incentives helped to develop current practice?

2) How do we deal with practices or policies that violate the law (or other preemptive policies)? This store is in clear violation of the law. Is it the best first step to get law enforcement involved? Can the result of that involvement be predicted? Is it important to determine whether or not the owners are aware of the law? What do we want to know about the store’s place in the community, and how would that impact the approach we choose? Are businesses organized in the neighborhood, and do they have a self-policing mechanism? Has anyone else in the community noticed this sign; are they concerned? When we begin by posing a series of questions, then we are guided to answer-seeking actions.

3) How do we create change in our own communities? This is a big question for a short blog post. I will keep you updated with my local experiment.