Systems Failure

I recently had the pleasure of meeting the women and girls of the Young Women's Empowerment Project. YWEP is made up of women and girls ages 12-23 who are involved in the Chicago sex trade and street economies, either willingly or unwillingly. They have been around six or seven years and have clearly spent a lot of time and energy thinking about how to build an organization that can be an asset to women and girls in their community.

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.

Insights from the ICU

Permit me a somewhat off topic post for my blog after a difficult ending to 2009. I spent the last couple of weeks sitting by my father's bedside in the intensive care unit of a Florida hospital. My parents were run down on the sidewalk a couple days after Christmas by a drunk driver. My mother took less of the impact and was released from the local hospital after a few days. My father was helicoptered to a trauma unit at a hospital about an hour away. His is out of ICU and well on his way to what will be a long, but probably full recovery.

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.

Clarifying Community Engaged Research

Last week at the American ublic Health Association Annual Meeting in Philadelpia, I was fortunate to hear Shawn Kimmel describe a spectrum for community engaged research. The spectrum goes from community-driven to researcher-driven with community-based (equal partnership) in between. Dr. Kimmel did not assert that one of these structures is inherently better than another, rather that their relative value lies in what one wants to accomplish.

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.

Structural barriers and social barriers

Today I heard a researcher talking about interviews she was conducting with people who use wheelchairs in NYC. She said that many of the people were less concerned with the physical accessibility of local stores, and more concerned with the attitudes of the store-keepers. As an example she talked about one woman, who, when encountering a step, knocked on the window of the store. When no one came, she asked another customer to go in and tell the clerk that she needed help. Still no one came. She felt very frustrated and angry, and was considering suing the store. At another store in the neighborhood, she was greeted by the storekeeper and helped over the step at the entrance. She became a frequent customer at that store and appreciated the assistance she received.

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.

Parsing policy v. practice

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.

Live discussion of collaborative policy design - October 23rd

Community-Campus Partnerships for Health (CCPH) is hosting a call entitled:
Participatory Policy Analysis: Achieving Systems-Level Change through CBPR. During the call, I will be providing a roadmap for this work, and soliciting experiences and insights from the audience. You can sign up by following the link below.
https://catalysttools.washington.edu/webq/survey/ccphuw/83731

Back in 2003, CCPH gave me a fellowship to produce a tool-kit for CBPR practitioners interested in policy work. "Speaking Truth, Creating Power," was the result. The popular is available for download at:
http://depts.washington.edu/ccph/pdf_files/ritas.pdf
The guide is currently under revision. Any feedback you have would be greatly appreciate by me and future users.

Informed Consent: relationship builder or destroyer

Informed consent is a process. Fundamentally this process is designed to protect the subjects of research. This is a critical goal for the integrity of individual projects, and for the longevity of human subjects research generally. The process can also serve to create trusting relationships between researchers and subjects.

Participatory research engages community residents as researchers, and encourages researchers to become actors. It blurs the roles of individuals and expands the functions of those roles. In this context informed consent should reflect the values of the partnership between the community members and the researchers. And this is tricky. It is a tricky proposition in and of itself - to create language that informs without assuming ignorance, that provides consent without giving away agency, language that is both collaborative and protects the rights of individuals and communities.

Institutional Review Boards have a long history, individually and collectively. When they draw on that history in review of current proposals, the can sometimes create roadblocks to collaboration between communities and researchers. The language and processes required by IRBs can have the effect of disempowering the very individuals they are trying to protect. When researchers are forced to read aloud pro forma language to people with whom they have an existing relationship, it creates a barrier. It reminds the researcher and the participant of the institution and the history of that institution and others. Some would call this a cultural competency issue, and it is that, but the problem of informed consent in participatory research and research done in partnership with communities also illuminates some of the tensions between "I" and "We" in the United States.

Practically, the best way to overcome IRB roadblocks is to engage community members in preparing informed consents, and in communicating with the institutional review board. Community experience is best articulated by those who have experienced it. And it is much more difficult for an IRB to argue that a community is not being properly informed if the community members can explain what language would be best understood in their community. This is yet another one of the values of community-academic partnerships.