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.

The value of secondary data analysis

This is the information age. More and more data being collected is also being made publicly available, particularly government collected data. Some geographies receive, for a variety of reasons (usually political and historical), more scrutiny than others. If you live or work in one of these communities and are thinking about research that will lead to change, utilizing existing data has a number of advantages.

Analysis of big data sets - the kind the government has the access and money to produce - can be a great starting point. It can give you some information about health outcomes, socio-economic indicators, sometimes even lifestyle. Then qualitative methods can be used to elicit the meaning of these facts to the community - the "hows" and "whys" that can lead to action strategies for change.

When you get to the action strategy phase, it is useful to have government data to back your claims, particularly when you are advocating for changes that must be enacted or implemented by the government. It is also illuminating to look at what data is being collected and how. Changing what the government collects for the record may be an important part of your advocacy campaign.

Analyzing available data, obviously takes less time than designing research methods, collecting data, and analyzing data. It is also much cheaper. In fact, most professional policy analysts do very little primary data collection, because of constraints of time and money.

For these reasons, secondary data analysis can be the just-in-time strategy that action-hungry communities are looking for.

Policymakers as Human Subjects

You may find it useful or necessary to interview policymakers or otherwise involve them in your research. When you are thinking about policy or systems level change, this is a valuable strategy. However, you may run into ethical issues, issues with your IRB or both. Let's look at some of them.

First you need to decide, are you going to run this through an IRB at all. I know what you are thinking, policymakers are human too! True. But as we all know there is formal research that is preconceived, and informal research, which might be an as-needed conversation with someone in the know. What is at issue here? 1) Actually protecting the rights of the individual policymakers and 2) Your ability to publish this aspect of your work in a peer-reviewed journal.

The problem that I have run across is that the role of a policymaker in society is poorly understood by IRBs. In one case, I felt very strongly that complying with the IRBs guidelines for a promise of confidentiality would be either dishonest and therefore damaging, or make the research completely unusable. As we know it doesn't take many variables to be able to pinpoint individuals. Even in a city the size of New York, if you are working on a specific issue and the policymaker has a strong well-known opinion or role, they will be very likely identifiable if quoted or described in anyway.

In some cases the best approach is a journalistic one. Journalists use a type informed consent also (but they call it a release form), and yes, like researchers some are more ethical than others. But there is rarely, if ever, a promise of confidentiality. The cooperative approach I like for policymaker interviews is a release that gives the policymaker a few choices. For example:
1) You may print or broadcast any quotations from this interview without consenting me prior.
2) You may print or broadcast quotations from this interview with my pre-approval.
3) You may not print or broadcast any quotations from this interview, or refer to me in publication, but may use the information I am giving you to better understand the issues.

Each of these selections has risks and rewards which should be outlined in the consent form. For example, risks to career or community status, or rewards to career or community status. Some may question the impact of this process on the quality of the data. But having worked with policymakers at varying levels, I have found they tend to be gaurded no matter what the circumstances, except for the few who run to the other extreme. That is just anectodal, and perhaps inconsequential. The first step to getting quality data is, after all, having a useful and honest informed consent process.

As IRBs are evolving to better respond to protection of communities, and still struggle to really understand action research and sometimes even qualitative research, lets throw another log on the fire and challenge IRBs to understand the risks and rewards of policy research.

Rural Research

I spent some time driving around Oregon last month, meeting people who are working in rural settings. At the training in Bend, a city of close to 100,000, surrounded by miles of spectacular rural lands, one participant raised an issue that I, as an urban resident/researcher, had never considered. They wanted to know if a rural community should try to partner with scientists who specialize in each of the problems they are looking at, so create many partnerships, or if there might be researchers who are "generalists." The question came out of the overwhelming logistics of trying to attract multiple researchers and institutions, separated by a geographic divide, to work in one small community. While some urban communities are literally fending off researchers, it seems the demand far outstrips supply in some rural settings.

Community-based research is a good option in rural settings, perhaps because for some rural communities it is the only option. If they don't organize to do the research no one will. And to add insult to injury, many of the community strengths, health problems, and policy barriers to health in rural communities are unique, both to rural settings, and in many cases singular to that rural community. By contrast, in a data rich environment like New York City, you can understand a lot just by looking at existing research, and sometimes conducting secondary analysis.

The good news is that many researchers who practice community-driven research are generalists out of necessity. If the community guides the research, how can one know in advance what expertise will be needed. Some communities and researchers do partner around very specific issues from the outset; they coalesce around common interest. But others come together to improve health in a community - be it defined by geography or experience. In that partnership framework, the ability of partners to draw on existing research, and to contact outside experts for consultation, is usually sufficient to plan research and action locally.

I was traveling Oregon with the Northwest Health Foundation, and was very impressed with their efforts to reach rural populations and to fund community-based participatory research in a way that would result in truly community-driven projects. I have since done some looking into the issue of research in rural settings and have found only a defunct rural research network. If you know of research resources targeted to rural communities, please post a comment with the details.

"Representing"

Much has been said about ethics of researchers conducting research in communities. And for good reason. But little has been written about the responsibility of individuals, representing communities, who engage in community-academic partnerships. Some of the literature around how to define community skirts this issue. Community can be place-based, or experience-based. We can see the tensions in many CBPR case studies, between community members who are on one side of an issue and a partnership on the other side. Sometimes these conflicts are classic, labor v. environment, service organizations v. clients, cultural clashes, old feuds. Sometimes they are more complex and subtle.

"Representing" is always fraught with difficulty. We wear multiple hats; we have many interests. Rightly, people working in partnership are very careful about claiming to represent others. However, even when their is verbal clarity about this, I find that the pressure to be representative to funders, to researchers, to policymakers, is somewhat overwhelming. Action, often in the form of influencing policy, is a long process. Momentum is difficult to sustain. We quest to accomplish, to have impact, to be large.

Obviously, researchers forming partnerships are somewhat responsible for making certain that they are not taking sides and creating conflict in a community. But to put this responsibility totally on their shoulders simply adds to the power imbalance that community-academic partnerships struggle with. So let us together begin to think about ways in which community members can take responsibility for the power that they gain in partnership.

Who is responsible for action?

I have recently been reading Steve Wing's commentary on research ethics in community-driven studies. (published in Environmental Health Perspectives v110, n5) He describes some of the serious challenges that researchers can face when engaging in research that supports communities over corporations, and the rewards that come from meeting those challenges. The choices he was forced to make were difficult, but it is not terribly difficult to recognize what the right choice was. You make a commitment to community members, you keep it. Even if it means some sacrifice, or a lot of sacrifice.

The environmental researcher's goal is to in Wing's words, "conduct studies that have the sensitivity to detect an effect if one exists." Then they work on dissemination. In academic journals, the media, and the community. This process of dissemination is in a sense action, action that may lead to policy change. This is strongly evidenced by the strong reaction of the pork industry, the pork-industry friendly government, and the university to the dissemination of findings from this research.

However, dissemination will get you only so far. Is it appropriate to leave policy action strategies to the community partner? If so, are they equally responsible to engage the researchers in the planning of action, as the researchers are responsible to engage community members in the research process?

Different partnerships do things differently, but if we were to think about best practices what would they be? So many partnerships get hung up at the action stage, and many do not achieve policy change, some because they never develop clarity about the policy change they would like to see. Many researchers are nervous about being seen as overtly political, because it will call their research into question. This is not without reason.

Much of what happens in partnership is not public. The best strategies leverage the diversity of roles and skills to create change. But if we are not clear, from the outset, who is responsible for analyzing policies, and for planning and initiating action, we may never achieve that clarity.

Including policymakers in program evaluation

Have you ever included interviews with policymakers in your program evaluation? If you are running a pilot program that a) relies on the cooperation of implementers or b) is a model that you hope to scale up, engaging policymakers can be a useful step.

Let's look at the first case. You are running a pilot program that relies upon the good hearts of implementers. In other words, you have cobbled together a series of special arrangements. Your program participants are treated differently than others. If these special arrangements have benefited your participants, it might be good to let policymakers know about that. Maybe they already know. By engaging policymakers as part of the program evaluation process you can find out what they already know about your program and the population you work with. You can also provide information about the program and the population. The research/evaluation paradigm is a useful one for this interaction. It takes the pressure off the policymaker, and puts the onus on you to improve your program. At the same time, it engages the policymaker as an ally.

How does all this impact implementers? People who have agreed to help you do things differently are change agents in their own right. Pursuing policy support for their activities and policymaker recognition of their leadership is a great way to reward their collaboration. The one caveat to this: if the implementer is doing something risky to their career by helping you, obviously you shouldn't call attention to it.

Lets look at the second case. You have a program you think is great and you want to replicate it. In this case, you again are going in to gauge the policymakers knowledge of your program, the problems it attempts to address, and the population you work with. The information you gather about how your population, problem, and program are viewed will inform your strategies for garnering support (monetary and other) for replication. Concerns must be addressed. Confusions clarified. Appeal amplified.

I did a series of interviews with policymakers as part of an evaluation of a jail-based re-entry program some years ago. The information obtained in the interviews helped to frame strategies for an advocacy campaign to support re-entry friendly policies. The creation of new relationships as part of the process (or in some cases the enrichment of ongoing relationships) was also extremely valuable.

Motivational interviewing for policymakers

One of the advantages of doing advocacy work in partnership is that different individuals and groups are perceived differently by policymakers. Researchers can be perceived as less threatening than an organized community group or coalition of service providers, particularly when the interaction is framed as research rather than advocacy. There may well be a host of valuable data that can only be gathered from policymakers. In addition to their views of current and proposed policies, policymakers generally have a sophisticated view of the policy environment. They may or may not be aware of various public health issues or community issues.

It is worthwhile for a partnership to think about interviewing policymakers, to collaborate on questions asked, and to consider the value of the research interaction beyond data gathering. This brings me to the construct of motivational interviewing. Designed as a therapeutic and not an investigative technique, its tenets never-the-less hold some value for action researchers. The motivational interviewing goals of establishing rapport, eliciting change talk, and establishing commitment language mirror that of the CBPR policy cycle. Beginning with creating rapport between the policymaker and the research partnership, the researchers have an opportunity to uncover information critical to policy change.

The policymaker will likely fall into one of three general camps
1) understands your issues, and is diametrically opposed
2) doesn't really understand your issue, and is either willing or unwilling to listen
3) supports your issue, but expresses some sense of powerlessness to move it forward

(There is another category of the policymaker who supports your issue and feels empowered to act upon it, but that is rare and unproblematic.)

So the first goal when approaching policymaker interviews is to understand in which camp the policymaker belongs. Then to delve deeper. Why do they disagree? Is it ideological? Practical? The more you understand opposition, the better you will understand your issue. For those who don't understand your issue the research relationship could also be used to educate. In political circles this is sometimes called push polling, where information that the interviewee does not know is built into the question to try to sway their allegiance. In key informant interviews, the approach is to simply provide what data you have already gathered on the issue as a basis for reactions from the policymaker. In the final camp, the researcher needs to explore the barriers that separate the policymaker from effective action. This information can then form the basis of a collaborative effort between the community and the policymaker to raise the level of political will to the point of action.

Throughout the process of a single or multiple interviews, the researcher can establish the reality as seen by the policymaker, and then use questions to elicit the changes in status quo that the policymaker seeks. This information can then be used to target persuasive arguments to this policymaker and others, when the partnership moves to the advocacy phase and begins to seek commitments from policymakers.

Does this feel ethically murky? Sure it does. But the reality is that qualitative research that engages public officials is an area poorly understood by IRBs and others. As this research becomes more common we will no doubt parse out some reasonable ethical guidelines. But to get to that point we have to first give it a try!

How do histories affect our work?

I just got back from doing a workshop with the Alliance for Research in Chicagoland Communities. Several participants spoke about the importance of beginning partnership with open discussions of history. Or should I say histories. The history of research in neighborhoods. The history of the universities and their relationship to the communities. This proposal to air out history came in the context of a discussion of trust-building activities. Trust, as we know, is a critical component of successful partnerships.

Is there another advantage to having a discussion of history early on? Would it help to frame the strengths of the community and the university, and the challenges both need to overcome in order to achieve health promoting change? Is it possible the discussion might actually uncover some interesting knowledge about the history of policies and their impacts on the community?

I recently met a young historian who specializes in criminal justice. She really opened my eyes to the potential value of that discipline to policy change. Understanding what has been done and how it was done informs our understanding of what can be done. Are there any partnerships out there who are working with historians or who consciously use history as part of their policy development process?

From subjects to citizens

Last week I attended the "Translating Science to Policy: Protecting Children's Environment Health" conference put on by the Columbia Center for Children's Environmental Health and WEACT. As a parent this conference was overall chilling, but also motivating. Sandra Steingraber spoke with particular eloquence on a point of interest for researchers, advocates and community residents alike. She said that one of the big mistakes of the environmental health movement in the last 15 years was to address people as consumers rather than citizens.

This insight made me think about changes in research attitudes over the years from traditional biomedical research to intervention research to CBPR. Researchers have been moving away from thinking of people as subjects. Participants is a word favored in CBPR circles. Clients in intervention research. It seems that for the most part we are still missing that leap, the leap that Sandra Steingraber has taken, of seeing all people as citizens - that is as political actors.

One appeal of intervention research and of CBPR is that you don't have to wait to complete research to begin to address identified problems. This instinct is a good one, many problems our communities face are serious or even dire. However, as Steingraber pointed out, on many issues we can't afford the time to research, to educate the public, and to wait for policy reform. From chemical regulation to emissions control to criminal justice reform, some problems impacting human health need immediate action. Is it possible that beginning to think of our research participants, our communities, and ourselves as citizens is a first step in achieving the kind of rapid policy reform that is necassary for our survival?

How might viewing yourself and the people you work with as citizens first affect your research, change strategies, and desired outcomes?

Is policy change part of social change?

We are fat, we are sick, we are poor, we are incarcerated, we are overwhelmed, we are struggling, we are in crisis, we are angry. Before the global financial crisis, and aside from the global climate change crisis, we had a lot of big problems. So the question is, should we continue to put our heads together - researcher and activist, service provider and consumer, young and old - and try to systematically craft better policy? Or should we just take to the streets?

There is no saying we can't and shouldn't do both. Myles Horton, founder of the Highlander Research and Education Center, said that if you have set a goal that you believe can be reached in your life-time, you have set the wrong goal. A perfect world is not achievable, but it is imaginable. So what does that mean for those of us who want to see better policy in the here and now. It means we need a well-articulated vision of our ideal society, so that we can propose achievable changes that fit into that vision. It also means that we need to keep proposing change that seems impossible, because 1) it helps others to understand our vision, 2) it helps to change the discussion of the issue, and 3) hey, you never know, maybe the US is ready for a black president.