"Community-Based Participatory Research"- Abe Lincoln Style

“Of the people, by the people and for the people”

Nothing in the world of research can be as challenging as engaging in community- based participatory research (CBPR). Our staff at the Institute for Family Health has been engaged in CBPR for almost a decade in the Bronx. We have encountered many challenges, but also have benefited from relationships that have extended well beyond our initial research objectives in a community with extensive needs - but also one with tremendous assets.

As a framework for thinking about CBPR, I will borrow a phrase from President Abraham Lincoln’s 1863 Gettysburg address as a way of organizing a vast set of critical concepts that researchers need to consider. Lincoln talked about a government of the people, by the people and for the people. He might just as well have been talking about CBPR.

Of the People

CBPR principles require a major reframing of the way that we think about research. Often times the most difficult aspect of beginning any research endeavor is framing the research question. The research question, in turn, suggests different research methods, statistical methods and resource needs.

If we are committed to CBPR however, the conceptualization of a research question takes on new meaning and new complications. The research question needs to emanate from the community we are working with. Mistakes in this phase of research development can send researchers off track for the entire duration of a project. Let me cite an example.

A researcher is interested in investigating why there are so many hospital admissions being made by children with asthma in the community. She hypothesizes that understanding medication and medication adherence is a major issue, and designs a project to test different methods of educating children and families about asthma. Linking up with a number of community-based organizations (CBOs) in the area she explains why this question is important and how she plans to investigate the topic. She presents background information to community residents to get their buy-in and encourage their involvement.

There is a disconnect, however. The community has different ideas about asthma. They are concerned that the epicenter of the epidemic in their community is the area where produce trucks wait to unload their wares, sitting for long periods, idling their engines and running their refrigeration units. The community members are also concerned because a large number of children in the community lack health insurance and cannot afford the expensive medications that are being prescribed for them. To add to their problems, the community hospital’s census is falling, so children are being more readily admitted for short hospital stays. In short, community residents conceptualize the asthma hospitalization problem completely differently than the researcher, and want help researching the issues they have identified. Moreover, they want help solving the problems they have deduced from their observations.

So our well intentioned researcher goes into the community to engage in research that is neither based upon the observations of the community, nor addresses the most critical issues as identified by them. What is a researcher to do?

CBPR of the people must start with research questions that are framed by the community, and are based upon the priorities they establish. In the example above, the community wants to know are if there is any evidence in the literature or that can be developed through a research grant - that would support or refute their observations. Does trucking exhaust increase the prevalence of asthma in the community? Does it exacerbate asthma attacks? Are the hospitals admitting more patients now than they did when their beds were full? How can parents know when hospital admission is appropriate for their children with asthma?

CBPR of the people, therefore, must start both temporally and organizationally prior to framing a specific research question. It must grow from the priorities of the community.

When the Institute began its work on health care disparities in the Bronx, we had observed that our 15 year effort to build primary care centers in the community and train primary care doctors to work there had not changed the health statistics in the community. These observations were coupled with observations about disparities in care in Bronx hospitals that we were interested in investigating and addressing.

We were not newcomers to the community. A decade before we had begun efforts to work with CBOs to identify areas of the Bronx where primary health care services were desperately needed, and to work with those CBOs to develop the services that they felt would best address those needs. We decided to start this research process by contacting a few of the key individuals we had worked with previously. They invited others they knew to the table, and together we discussed the problems of the health statistics we had put together. We also put together a visual presentation of the findings of medical and health services research studies, one study to a slide, with the results expressed in simple, non-scientific language. We presented a selection of the many studies in the literature that described the disparities in health care and in health outcomes between people of color and whites.

The result of this preliminary inquiry was a decision to run focus groups in the community – 10 in all – and show the disparities slides to the community. The focus group participants were asked to share their experiences with the health care system and to discuss their ideas as to the root causes of these disparities. What emerged was the outline for a research and action agenda that would never have been conceived through more traditional methods.

In summary then, CBPR of the people starts with a definition of the problem that flows from the community’s priorities and from the causality hypotheses the community has about those problems.

By the People

CBPR, like other partnerships, requires that value be brought to all the people and entities involved. Maximizing the opportunities for community residents and community leaders to play significant roles in research is critical to making sure that the research is done by the people to the maximum extent possible. This brings multiple benefits to the collaboration.

First it strengthens the resources in the community building capacity for future research efforts.

Second, it builds trust among community residents. Grant funds are distributed to community agencies and individuals, contributing to their economic strength and demonstrating through action rather than words, that this is truly a shared effort.

Third, community residents have access to places that academic researchers have difficulty engaging. Engaging faith organizations and community based organizations in survey research or focus groups is best done through the existing involvement that community residents have with those organizations.

There are many roles that community members can play in a CBPR project. All of these help bridge the gap between academia and the community. In the project design phase for example, community residents can name and brand the project, identify community based organizations to participate, review the design of consent forms , interview proposed program staff and perform other functions. In the project implementation phase they can recruit participants, run focus groups and field community surveys. When the data has been generated they can review focus group tapes and code them, help to interpret the results, plan next steps for the research program and present the findings in community based as well as academic settings.

For the People

Perhaps the most critical aspect of CBPR is the notion that the entire project is being done for the people. It is critical that this is reflected in our actions, not just in our words. Our own focus group research confirmed what published studies have shown many times – that people in ethnic minority groups have a lack of trust in the health care system. Those that distrust the healthcare system are unlikely to trust that their best interests will be protected in any clinical trials in which they might participate.

As if Tuskegee wasn’t enough to scare people of color away from “research,” evidence of disparate treatment in the healthcare system, as well as enormous and ubiquitous disparities in health outcomes are frequently cited in both the medical and lay literature. The Institute of Medicine report on health care disparities received widespread news coverage, as has their report that hundreds of thousands of Americans lose their lives every year due to medical errors.

In addition to the above, communities are cognizant of the fact that academic medical centers, which are the focal point for a large portion of NIH research dollars, often sit in inner-city areas but frequently have had minimal contact with people and organizations in their surrounding community. In fact, some have become demonstrable examples of inequality in treatment.

Some run clinics that serve as training facilities for students and residents. Most have at least two standards of care – one for “private” patients and one for “clinic” patients – often called “teaching cases”. More and more of them are developing “boutique” units where the wealthy can get special treatment, further creating inequalities within their delivery systems.

To people in the community - the health research enterprise is indistinguishable from other parts of the health care system, so as we step out into the community we do not come from a neutral place. This is especially true in low-income areas and in communities of color, where the health care system has long neglected the community’s concerns about access to care, and where many people get less than optimal care. We must recognize that we must start by climbing out of a deep hole of distrust. In these communities, researchers must make extraordinary efforts to ensure that they are offering benefit to the community and not merely locating their research activity there.

One way we can do this is by examining how patients are recruited for clinical trials. We must recognize that patients often participate in clinical trials in order to gain access to care that would otherwise be unavailable or unaffordable to them. This is especially true of the uninsured. Without insurance, gaining access to clinical trials may be the only way to get care of any kind. How can we use this as an opportunity to build trust? We need to focus on the fact that we are there to engage in research for the people. We need to be committed to making sure that anyone we interview for possible participation in our clinical trials gets treated – whether in or out of our trials. One way to do this is to develop a set of referral resources for patients who do not meet trial criteria so that they may also receive their needed care. This demonstrates to the community that we are there to help people – not merely to engage in our research activities.

Another important aspect of doing research for the people is making sure that our commitment to our community partners extends beyond the publication of our research findings. The community needs us to help them fix the problems that we identify. Community based participatory research always requires follow-up- whether it identifies problems or highlights opportunities to remediate them. For example, our work with the REACH 2010 program funded by the CDC revealed a tremendous information gap between community residents and the health care system. Residents had many misunderstanding about how to access the system, their rights within the system, and how to advocate for themselves when they are not satisfied with the treatment that they receive. It would have violated our beliefs in CBPR, and compromised our relationships with our community partners, to have learned this and failed to commit ourselves to helping to solve this problem. Therefore we worked with our community partners to obtain both State and private funding to provide educational programs in partnership with faith-based institutions and community-based organizations.

In addition, the voices of professionals alongside theirs validates what community members have known for years, and gives them a sense of hope – that they are finally being heard by someone “inside” they system. It also adds credibility to their claims in the public sector where legislation and regulations are made.

In short, we constantly have to put ourselves in the shoes of those we are serving – the people in the community – to partner to solve the problems we identify.

CONCLUSIONS

CBPR which is of the people, by the people and for the people is the only type of research we should be doing in communities which have been historically underserved by the medical care system, and which are, as a result, most vulnerable medically. Any other approach to engaging the community in research is exploitive and fosters the inequity and distrust that we must seek to eliminate.

CBPR done well is a most rewarding experience, building trust by earning it, building relationships with people who we might never have encountered otherwise, and leaving a positive footprint where we have tread.