Martine Hackett, PhD
Assistant Professor of Health Professions, Hofstra University
“What am I doing here? Is this real research? I’m just hanging out, talking and listening.”
That is what I thought to myself during my first experience with a community-based research project. It was the summer of 2012, and I was in Roosevelt, New York, sitting with a group of teenagers who worked at the local farmers market. At this point, we had been meeting regularly for a few weeks, and they were used to the routine. We were looking at and commenting on dozens of photographs that they had taken with their mobile phones of places within their community. The pictures were being projected onto a screen in a room in the basement of the Roosevelt Fire House, and I would ask, “What does this picture show?” and “Do we want to keep it?” Back and forth we went, and their comments sometimes would tumble out and overlap, and other times there was bored silence, and I had to know when to try and pull something out of them or when to quit. By the end of several weeks of work, we were able to come to an agreement on which pictures and comments they felt best represented the assets and areas for improvement in their community. It didn’t feel like research because at its core, this was a natural conversation that had a purpose. And it was kind of fun.
This community-based project used a participatory method called PhotoVoice, which works with a group of community residents to examine visually an issue of concern by going out and taking pictures of the assets and needs within the community (Wang & Burris, 1997). Participants go through an iterative process where they comment on what the photograph shows as it relates to the target issue. The photos are then displayed along with the captions and used by the community for advocacy and addressing change, with the photos and the community members’ words as evidence and testimony. Over the course of about three months, I worked with the teens from the Roosevelt Farmers Market to create a display of their photos and their voices, which was presented by the students at a community meeting and dinner attended by local legislators, businesses and nonprofit organizations.
Focusing on the assets and barriers in Roosevelt with regard to healthy food access and physical activity using a community-based approach allowed the young community members to address real-life concerns. They were proud of the work they had done, and the findings from the PhotoVoice project were used to address specific areas of change in Roosevelt. Even with all of that, as I looked back on the time and effort spent, I had to wonder: “What do I have to show for it?” For even though it felt valuable and worthwhile, I was still an assistant professor on the tenure track who had to produce scholarship.
Did this really count?
The level of academic research participation with community members runs on a continuum from traditional top-down approaches where the researchers are in charge to more inclusive and equitable models. (See below.)
Community-Placed to Community-Based: A Continuum for Engagement and Action
Community-based participatory research (CBPR) is one of the most inclusive approaches to research, which takes “a collaborative approach that equitably involves … community members, organizational representatives, and researchers in all aspects of the research process” (Israel, Schulz, Parker, & Becker, 1998). It is not a research method, but rather a way of approaching research that is based on the premise that community members have an expertise that is equal to that which researchers possess and that if research and action are to take place successfully within a community, its members must be involved from the beginning to the end. Specific research methodologies can be employed, from surveys to focus groups, using both quantitative and qualitative analysis. CBPR has been found to be particularly useful for public health-related topics to achieve health equity (Cacari-Stone, Wallerstein, Garcia, & Minkler, 2014).
Why is there a need for community-based research?
Traditionally, the nature of health-related research is often viewed skeptically by members of communities of color in the United States. For example, there is a persistent lack of trust within the African American population, informed by the Tuskegee Syphilis Study, public health research that jeopardized the lives of hundreds of men – and still resonates over 40 years after it ended (Freimuth, Quinn, Thomas, Cole, Zook, & Duncan, 2001). In addition, past public health policies to sterilize Puerto Rican and African American women (Stern, 2005) and the medical mistreatment of American Indians (Warne & Frizzell, 2014) have fostered a general sense of mistrust between the researcher and the researched. In response to this top-down approach, there have been counter movements to rebalance the relationship, i.e., in the action research movement of Kurt Lewin in the 1940s and a circle of planning, action, and fact-finding about the result of the action; Paulo Freire’s Pedagogy of the Oppressed in the 1970s that critiqued the concept that learning comes from instructors “depositing” thoughts into their students’ heads; and the disability rights activism in the 1980s and 1990s that popularized the slogan “Nothing About Us Without Us.”
CBPR follows in this tradition and calls for expanding the spectrum of how researchers engage with communities. However, new challenges then surface. There are the ethical issues in terms of how much of someone else’s story is appropriate to share, even if it is for the good of expanding knowledge. There is a danger in reinforcing stereotypical perceptions of communities by “giving voice” to them. Academic researchers may simplify the positions of community members in presenting their stories to academic audiences. The power dynamics that are raised with questions around who controls the funding and other resources for the research projects can be a source of tension and stress. Faculty members can unknowingly carry baggage associated with the academic institution and past experiences that may have an effect on the interactions with community members. There is also a potential imbalance between those on the academic side, for whom engaging in the work is part of their profession, and community members, for whom this is extra, often uncompensated work that relies more on passion and perseverance than on promotion.
Still, there are problems with not including the community perspective, particularly within public health, health care and medical research. Historically, the practice of public health has been seen as paternalistic, educating and promoting the “right” way that people should behave, which often varies from the traditional behaviors of community members. A fitting example of this contrast between research findings and community perspective comes from when I worked at the New York City Department of Health on safe sleep initiatives to prevent infant deaths due to Sudden Infant Death Syndrome and suffocation. Though the recommendations based on research and policies were that infants should sleep in a safety-approved crib, we met with resistance from different groups of mothers. Some were committed to the practice of creating a family bed for parents and the baby. Others had to share a bed with their babies due to lack of space for a crib. Many mothers who wanted to breastfeed at night chose to have their babies sleep next to them. Some had cultural traditions where sharing the bed was the norm. Still others had unstable living arrangements or moved frequently and were at times unable to have a crib available. We realized that a one-size approach did not fit all and that to ensure that our messages on infant safety were received, we needed to understand the viewpoints of the people who were affected. This was the start of my interest in working with communities to find solutions to health problems.
When I started as an assistant professor in the Department of Health Professions at Hofstra, I was drawn to using CBPR approaches to research but realized that I had a lot to learn. Some of what I learned was attained by diving in and just doing it, which is what I did for the Roosevelt PhotoVoice project. I also went on to take additional weeklong trainings over two summers – first with the Public Science Project at the CUNY Graduate Center and then at University of Michigan, Ann Arbor. It was at these intense training sessions that I met other researchers who were interested in CBPR from around the country. I also met seasoned academics who have made CBPR their career and have succeeded. They did not underestimate how difficult it was to take this path. It takes much longer for this type of research to develop compared to other types of public health research, and it also involves negotiation between community members on how to publish and present the results of CBPR work. At University of Michigan, I learned how its Detroit Community-Academic Urban Research Center set up processes for community members to be co-authors of peer-reviewed journal articles and presenters at professional conferences. They also developed procedures so that community partners could be equal partners in grant applications – a true measure of shared power by sharing the funding. What I learned from my training experiences was that CBPR is a valid method for research that is consistently validated by the awarding of millions of dollars in federal grants.
Appreciation for community collaboration in research seems to be growing. The new journal Progress in Community Health Partnerships focuses on publishing community- based participatory research, and the Patient-Centered Outcomes Research Institute (PCORI) is a government-sponsored organization that helps patients make more informed health care decisions and funds research that is guided by patients and health care providers. These are positive steps to validate the work of community-based research as legitimate scholarship and not just service by tenure committees and funding agencies. I was even eventually able to publish a peer-reviewed journal article on the results of the Roosevelt PhotoVoice project with two of the Roosevelt community members I worked alongside as co-authors (Hackett, Gillens-Eromosele, & Dixon, 2015).
A key component within the participatory research approach is the recognition that the means are as important as the ends. As a process, participatory research demands flexibility to meet people where they are as well as patience to keep the goals in mind and the team on track over and over again. I have learned that simply being present within the community – at events, at celebrations, at public meetings – has given me a visceral connection to the people and the place that could not be achieved through prescribed research projects alone. Involving the community in the process enhances the overall quality and integrity of the research and results. Now, over four years from when I started doing CBPR, I can answer my own question – yes, this is real research. And it was worth it.
Burns, J. C., Cooke, D. Y., & Schweidler, C. (2011). A Short Guide to Community-Based Research. Accessed at v5.healthycity.org/en/blog//short-guide-community-based-participatory-action-research.
Cacari-Stone, L., Wallerstein, N., Garcia, A. P., & Minkler, M. (2014), The promise of community-based participatory research for health equity: A conceptual model for bridging evidence with policy. American Journal of Public Health, 104(9), 1615-23.
Freimuth, V. S., Quinn, S. C., Thomas, S. B., Cole, G., Zook, E., & Duncan, T. (2001). African Americans’ views on research and the Tuskegee Syphilis Study. Social Science & Medicine, 52(5), 797-808.
Hackett, M., Gillens-Eromosele, C., & Dixon, J. (2015). Examining childhood obesity and the environment of a segregated, lower-income US suburb. International Journal of Human Rights in Healthcare, 8(4), 247-259.
Israel, B. A., Schulz, A. J., Parker, E. A., & Becker, A. B. (1998). Review of community-based research: Assessing partnership approaches to improve public health. Annual Review of Public Health, 19, 173-202.
Stern, A. M. (2005). Sterilized in the name of public health: Race, immigration, and reproductive control in modern California. American Journal of Public Health, 95(7), 1128-1138.
Wang, C. C., & Burris, M.A. (1997). PhotoVoice: Concept, methodology, and use for participatory needs assessment. Health Education & Behavior, 24(3), 369-87.
Warne, D., & Frizzell, L. B. (2014). American Indian health policy: Historical trends and contemporary issues. American Journal of Public Health, 104(S3), S263-S267.