When you design a research study, how often do you talk with other people about what that study should look like and how it should work? Probably fairly frequently: science today is a team sport. But how often do you include people from your local community in those conversations? People who do not have advanced training, but who do know what matters to their families and to their community? How often do you help those individuals have an equal voice in your research with people who have PhDs and MDs? This idea, including community voices equitably in all stages of research, is the foundation of a different approach to research: community-based participatory research (CBPR). Our new paper, Integrating community-based participatory research and informatics approaches to improve the engagement and health of underserved populations, walks through how five different research studies in biomedical/health informatics applied CBPR, the barriers we encountered, the lessons we learned, and the benefits to both our research and our communities from taking this approach. We even include a handy checklist (Link to Checklist PDF) with the paper to help you think about how to apply CBPR in your own work.
Who belongs at the table? Who should be in charge?
One of the parts that I love most about working on healthcare technology is seeing so many innovative and amazing concepts to help people manage their health. The problem is that many of the people who we try to reach with our research don’t necessarily view new apps and gadgets as being that appealing. People have families and jobs, go to schools, and live in communities that have different and more pressing concerns than the cool new apps that we’re developing. There is also a long history of distrust between communities and researchers, based on the practices of the past and in some cases on ongoing behavior. It is hard to know, as a researcher, how to connect with the people who I feel might benefit the most from the kinds of research that I care about.
Community-based participatory research (CBPR) is one path to help researchers and community members build meaningful connections. CBPR takes a different approach to research. Instead of researchers defining the agenda and deciding what questions are important enough to investigate, CBPR involves community organizations and community groups in all phases of research. Getting involved in CBPR can be a little bit intimidating, and that’s part of why our group of researchers came together to write a paper about our experiences in applying CBPR to biomedical/health informatics research. Our goal with this paper was to help other informatics researchers learn about the ideas driving CBPR, the positive and negative experiences we’ve had in our research, and how to get started in CBPR.
The idea of including people who we hope will use the technology in designing the technology is not new. We’re talking more frequently about user-centered design in biomedical/health informatics, and several of us are looking into participatory design as well. CBPR does not stand in conflict with these approaches, but rather it goes further and asks the question: who needs to be at the table when we talk about biomedical/health informatics research? Figure 1 shows some of the basic differences between CBPR, user-centered design, and participatory design. CBPR requires development of continuous, sustained partnerships between community members, community organizations, and researchers. CBPR also involves sharing control of the research with the community who will be impacted by the research, and involving community partners in sharing the results of that research.
What did we learn?
Our paper looks at five different projects that used ideas from Community-Based Participatory Research (CBPR). The projects didn’t have much in common besides CBPR. They took place in different areas: Flint, Michigan; Ontario, Canada; Denver, Colorado; New York City; and Nashville, TN. Some of the projects focused on specific chronic diseases, like HIV/AIDS and Sickle Cell Disease, but other projects had a broader scope, like working on healthy eating and overall community health. While several of our authors had lots of experience working with CBPR, we also had two graduate students, a community member, and a junior faculty member who was exploring CBPR as part of a career development grant.
Our group of authors compared and discussed what our studies had in common and what made them different from each other. Across all five studies, we looked for both the benefits and challenges of using CBPR. We compared what had gone well in each study and the problems or challenges we had to manage during each study. We learned that CBPR helped to make our research more relevant to people and that it also led to people who were part of the research spreading project information to their families and friends. People rejected study ideas that didn’t work for them and this helped to improve how the research fit into their lives. Using a CBPR approach also helped to increase diversity in our studies, a problem in health informatics research. Finally, because CBPR focuses on developing people, a wider group of people involved with the project had opportunities to learn and grow as part of the projects. Researchers had the chance to learn about community needs; community members and community organizations gained new professional and research skills.
The road to incorporating CBPR into our projects was not always easy or straightforward. Academic and community settings do not always share the same ideas, right down to the basic idea of how different people think about time and project schedules. For a researcher, the idea of handing some control of the research project over to a community partner can be intimidating, but this is a central part of CBPR. Finding appropriate groups and community members to work with was challenging, something that I actually still struggle with. Community organizations do not always have the resources and capacity to engage as research partners, and funding budgets need to take the idea of supporting people and infrastructure investment at the community partner into account. Building rapport and a true partnership with the community requires time and energy, and everyone involved needs to be working towards long-term sustainability. Flexibility is key, but again takes time and energy and requires researchers to think about the process of research differently than in previous research paradigms. In the paper, we also share the lessons that we have learned through our research, to help others proactively deal with these kinds of challenges.
A call for action
Researchers and communities can work together to improve the relevance, reach, and impact of biomedical/health informatics research. We as researchers have a responsibility to make sure that voices from outside of academia are heard and listened to in our projects. Community-based participatory research (CBPR) is one path that can lead towards more equitable research participation. While the CBPR path is not always smooth or easy, the potential benefits are significant.
Scientific research is both a highly organized process and also a bit of a craft that you have to learn and practice to really get skilled at doing. Working on this paper allowed us to think about how we do research and to share our experiences with others. I’m grateful that I had to chance to learn from this skilled group of researchers, and even more grateful that JAMIA is allowing us to share what we learned with you. I hope that this paper helps to start a dialog about how we can apply CBPR to more biomedical informatics research.
A sampling of other resources beyond our article if you want to learn more about CBPR:
An excellent talk by Barbara Israel
Two solid overview books:
Methods for Community-Based Participatory Research for Health, Edited by Barbara A. Israel, Eugenia Eng, Amy J. Schulz, and Edith Parker
NIH Office of Behavioral and Social Science Research CBPR Methodology page, including information on funding opportunities, training initiatives, and a sampling of results
CBPR Toolkit developed by the Association of Asian Pacific Community Health Organizations (AAPCHO) with many links to articles and other resources.
Full paper citation:
Unertl KM, Schaefbauer CL, Campbell T, Senteio C, Siek KA, Bakken S, Veinot TC, Integrating community-based participatory research and informatics approaches to improve the engagement and health of underserved populations. Accepted, JAMIA (in press).
Where you can find this paper:
Link to the paper on the JAMIA Website
Special note: the paper is OPEN ACCESS from the date of publication, thanks to financial contributions from myself, Suzanne Bakken, Katie Siek, and Tiffany Veinot.