Robert Wood Johnson Foundation (RWJF) Clinical Scholar 2007-2010 Peggy Chen, M. D., was intrigued by the potential impact of Community-Based Participatory Research (CBPR) from the moment she learned about using it as a unique, neighborhood-based way to address health issues. “CBPR truly resonated with me,” Chen said. “I thought it was a wonderful way to help communities benefit from research, but as I reviewed several CBPR cases, it seemed that in many instances research findings were not being adequately shared with community partners.”
Sensing a possible disconnect between the researchers’ good intentions and the way the work was actually being conducted, Chen decided to take a closer look at what happened after CBPR projects were completed. “We did a literature review of 101 CBPR studies, including a survey of all corresponding authors,” Chen said. “Among the authors, 98 percent reported disseminating research results to individuals in the communities that had taken part in the research. In addition, 84 percent of survey respondents reported sharing results with the general population in the community.”
Even though Chen’s study, “Dissemination of Results in Community-Based Participatory Research,” which is online in the October issue of the American Journal of Preventive Medicine, found a high rate of CBPR follow-up among researchers, it was clear that the quality and extent of the dissemination efforts varied greatly from study to study. Chen also learned that while researchers recognized the value of dissemination, their academic institutions, in most cases, did not. That gap—between work and reward—was a significant problem.
“We conducted a content analysis of free-text responses from survey participants,” Chen explained. “All agreed on the importance of dissemination and said they would like to spend more time doing it, but that their academic institutions did not reward them for working with communities after the CBPR projects were completed. Tenure, recognition and in many cases, additional grants, are not earned by spending additional time with the community,” Chen noted. “Academic institutions might consider recognizing this different type of achievement so that researchers feel safe taking time from other endeavors to fully share their results and create change in communities.”
Community members, Chen discovered, also needed to be far more active about being included. “There’s often a significant power differential between community members and researchers, largely due to expertise and control over funding. But community members can raise a stronger voice or even consider obtaining their own funding to balance that relationship and get more out of the studies done in their neighborhoods,” Chen said.
Both sides are missing out on what Chen found were the significant advantages of making sure that community members fully understood the results of CBPR studies. “In cases where CBPR results had been disseminated effectively, it spurred community support for using study findings and fostered enthusiasm for further research participation,” Chen said. “Some researchers also cited their community dissemination efforts as key to obtaining further funding for their work.”
One of the best examples of dissemination Chen found was a team that shared information on complex genetic research with an Alaskan Native community. “The researchers consulted with various community members to learn how to effectively communicate the results. Members of the tribal council recommended replacing pie charts and bar graphs with cultural symbols that could more easily be understood by community members,” Chen said. “This approach helped create a commitment and sense of ownership of the results for the participants.”
Helping CBPR Go Viral
In new work that puts her own findings to great use, Chen, a pediatrician, is working with New Haven Healthy Start on a project that is, by any CBPR measure, a great success story. “I partnered with New Haven Healthy Start to create a series of health education brochures about reducing low birthweight deliveries and infant mortality,” Chen explained. “Healthy Start participants chose the topics. We focused on healthy eating and lowering stress levels. There is not a line of text or graphic in the brochures that community members did not have input on. We also used a coupon survey to assess participants use of the local farmers market.” Results were disseminated to the Healthy Start community and the market staff.
Working with New Haven Healthy Start was particularly significant because, Chen said, “like many community advocacy organizations, they had been wary of participating in medical research.” But Chen’s all-inclusive approach to the project triumphed over that history. “New Haven Healthy Start was so pleased with their CBPR experience that they asked us to help them create their own brochure to teach other agencies in their national organization how to participate in CBPR. They became advocates, using their experience as a model,” Chen said. The farmers market also expanded into a new area of the community, in part, because of the data from the study’s coupon survey.
“I owe a large part of this success to RWJF because I would not have thought to emphasize CBPR in my research if not for my studies as a Clinical Scholar,” Chen said. “It helped me focus on the question: How can research have a true impact on people’s lives if it’s not shared?” To create more effective CBPR projects, Chen suggests researchers “build dissemination into their grants, think about it as they formulate their research questions and make it part of their overall plan.”
The Robert Wood Johnson Foundation Clinical Scholars program advances the development of physicians who are leaders in transforming health care through positions in academic medicine, public health and other roles.