Farrah Jacquez, PhD
Professor & Assistant Director, UC Office of Research
Learning objectives
- Describe pros and cons of community based participatory research
- Discuss how participatory research differs from traditional research methods
- Explore opportunities for publishing community engaged scholarship
Often the community voice is left out of research/scholarship, and especially when it comes to summarizing and presenting the data back to the community, poster presentations or publications.
I really interviewed with my home program at Wright State University in Dayton, OH. The program director and I spoke about our respective experiences with immigrant/refugee populations, un- and under-insured populations, and those most affected by the social determinants of health. The residency program has just received an additional 5 years of funding to continue and expand their Street Medicine program. With the original funding, they supported one fellow and many medical students interested in completing a longitudinal experience with the Street Medicine program. With the additional funding, they can now expand their Street Medicine program to interested residents, especially those interested in Addiction Medicine.
The program director told me that she worked at a resource center for people needing showers, laundry, food, etc for four months as a volunteer before beginning any kind of medical programming. She said that she scrubbed showers and served meals so that she could get to know the population and better identify their needs alongside them instead of for them. When she started the medical programming, the community already knew who she was and trusted her; they were surprised that a doctor had spent months volunteering in a non-clinical role. Dr. Squibb, the residency director, seemed to truly live out the “practice what you preach” saying: she got to know the community, earned their trust, and did not impose. She is a wonderful example of including the community voice.
Ensuring this is done well in the future is a responsibility of everyone involved. I think that many of us have a sixth sense that something is truly missing when we leave the community voice out of our research/scholarship, but it can be easy to look past this missing piece if others are willing to do the same. Many times it requires “extra” work and time to get to know the community and work alongside them to identify needs, but this work and time almost always creates a more impactful research project. We’re all likely been a part of a project that sounded good in a publication but didn’t actually execute well in the field or make much of an impact. If we keep the focus on positive impact and avoid being caught up in the “how can I make this look good on my CV” mindset that many pre-meds/medical students fall victim to in this competitive profession, we will naturally include the community in our research/scholarship.
I’m so glad you got to connect with a program about your passions and learn from a local leader that walks the walk and invests in healthcare for all in the Dayton community! Your future patients will be lucky to have a physician who takes her role as a community member seriously. It is unfortunate that incorporation of the community voice often is viewed as “intangible” or “extra” work rather than a gold standard for the quality of work that is necessary to inform social change. Imagine if the rigorous nature of the scientific method for bench research were viewed as “extra” work. Sometimes I think the very nature of doing any form of work on an oppressed group earns people enough social capital that they stop pursuing excellence in how that work is performed. As you say, we cannot let ourselves fall victim to the mindset of what looks good on a CV. The value we provide in the work we do is what matters.
Dr. Squibb sounds amazing!
Huge shoutout to Dr. Squibb for that!
The barbershop study in Chicago came to mind as an example of this going well. In this study, barbers were involved in a CBPR study on increased rates of lung cancer amongst Black men in Chicago. A key piece of the study that I believe is done well is the education that systemic racism generates increased stress, and this increased stress increases inflammation and cancer risk. Subjects in this study left with a better understanding of their own bodies and communities. Hair cortisol was measured from hair samples of each of the subjects. Given the history of harm done to Black americans by research groups, they are less trusting of research and less likely to engage as subjects in a study. By incorporating community leaders — barbers — who were trusted, both recruitment and quality of information gathered was better. The response rate was 100%.
The concept of culturally appropriate recruitment is something I would like to pay attention to in my career. It is important to recruit participants for a research study in a space they trust, and to partner with leaders in those spaces.
I think that the pressure of producing a large number of papers that is put on academics is a barrier to this kind of research. Our standards drop when emphasis is placed on quantity — especially when this pressure is placed on students without much experience. We need to collectively resist this pressure and have integrity in the ways in which we involve ourselves in research.
https://pmc.ncbi.nlm.nih.gov/articles/PMC10859066/
Bridging the Gap: Engaging Black Men in Lung Cancer Research Through Barbershop Collaboration
This is so cool. Seeing lots of parallels with the Community Tool Box article and how the nutritionist engaged so many members of her community to figure out unhealthy eating patterns with her patients.
Although not a perfect example, my job before medical school comes to mind in thinking about incorporating community voice. I worked for a large dialysis company in their corporate headquarters and was part of a team of computer developers focused on designing a dialysis-specific EMR. My team was in charge of building a pilot system with a small group of clinics, gathering their input and feedback as we designed the system. While reading this month’s materials, I think this project was an example of a project that set out with the intention to include community voice, but actually ended up doing so poorly because the project was truly operating on it’s own alongside the community with misaligned incentives for participatory research.
For example, the clinic leadership was bought-in to this project, but the individual clinicians were not really. Whenever I’d go out to talk with some of the people actually using the system, they were not often very excited to talk to me or did not see a need for a new system at all so were unengaged with testing. They were correct – the clinic community did not come up with a need for a new EMR, the idea was created by corporate headquarters. It often felt like we barely had buy-in from the community that was supposed to be a partner. Timeline was dictated much more by headquarters than the community, and, although we went in asking for feedback, there were certain things that were already decided by people on corporate teams, so asking opinions felt disingenuous at times since certain areas were already set in stone. I fear some of these patterns can happen in community engaged research as well due to the emphasis on time spent in community and on relationships when these conflict with timelines, publishing pressures and financial incentives.
I know my above example was not specifically research, but I do think it exemplifies some of the challenges of community-engaged research, especially when thinking about the “rebalance of power” that Dr. Jacquez mentioned. My work project was not two equal partners working together for a shared goal, and calling it such broke down the very partnership that it tried to build.
In thinking how CBPR can be done well in the future with my own career as a physician who is excited to be very engaged with my community, I think honesty in my intention of engaging the community seems most important. I don’t want it to be a checklist item that makes me feel good when in reality, the shared objective or time commitment is not there. I want to take Dr. Jacquez’s advice about persistent showing up to community organizations and asking what I can learn from the people there rather than barging in with my own ideas.
I love your example because it expands the ideas of the readings outside of research, making it easy to understand where the principles align between the two. Honestly, that sounds like a frustrating project to have worked on since you already knew that things weren’t going to change with the physician’s feedback but you were out there getting it anyways. Your example has me wondering more about products that are built for people, but without the intended customer’s input taken into consideration. Eventually, market forces will work and people won’t buy a product that doesn’t meet their needs. These market principles don’t apply to community based research as well, because the researchers have their own CVs/research output in mind here. I wonder if there is a way that we can try to re-create these market forces onto researchers, so that the CV is more defined by community response?
What an interesting example! I recently was talking to a family med doctor about why they chose to work for the health system that they did. They explained how important it was that the “corporate” or administration of the health system were staffed by physicians. Not only did he want the administration to be made up of physicians, but he wanted a formal stance of the administration on the importance of primary care and involving primary care physicians in the future direction of the health system. He could not speak higher of the family med doc who just became CEO of his health system or the family med doc who has been the CMO of the health system. Maybe that type of corporate would not push a new system or other changes that the clinicians don’t want/ask for.
Often, the community voice fades between data collection and dissemination. I have seen this happen when researchers approach community-based participatory projects as if they were traditional studies with an added layer of outreach rather than shared inquiry. In one example, a public health team conducted interviews about access to care in underserved neighborhoods. The findings were analyzed and presented at national conferences, but no one returned to the community to share the results. The academic poster highlighted regression models and confidence intervals, but it failed to convey the participants’ experiences or offer tangible next steps. For the community, the study simply disappeared once the data were collected. It was a clear example of extractive scholarship, where the process took more than it gave back.
I have also seen this done well in work that truly honors collaboration. In a pediatric project involving families of children with developmental disabilities, caregivers were included at every stage. They helped craft the research questions, reviewed themes, and co-presented results at national meetings. The research team created both a peer-reviewed manuscript and a visual summary written in everyday language for families and clinicians. That approach embodied the spirit of community-based participatory research: academic rigor joined with social relevance, producing knowledge that the community could recognize and use.
To ensure this is done well in the future, I plan to build community engagement into every step of the research process, not only the beginning or end. This means involving partners in interpretation, crediting their contributions through authorship, and sharing findings in accessible ways. Participatory research differs from traditional research because it values lived experience as expertise. Publishing community-engaged scholarship should reflect that same principle by producing work that informs both scholarship and the communities that inspired it.
I resonate with this reflection because, throughout our project’s development, my community partner and I often had to take a step back. Rather than focusing on research surveys designed solely to generate academic data, we aimed to create a project that would provide tangible benefits for the Northside neighborhood. As Noah mentioned, this required thoughtful decision-making at every stage. In our case, we needed to develop a referral process that would enable our clinic to reach its full potential—one that incorporated input from both clients and those who serve them. Instead of “showing up” with a preset agenda, we recognized the importance of flipping the tables toward shared decision-making that centers their priorities.
I was attending a talk on rural health innovations in the US healthcare system that are based off of global health innovations where I learned about an intervention with the Navajo, White Mountain Apache, and San Carlos Apache communities. Johns Hopkins Center for Indigenous Health leads this intervention from the academic side, and it comes off of a legacy at Hopkins of ignoring the needs of the communities they work with for generations. This had been particularly true with the relationship between Hopkins and indigenous communities, but was gradually recognized by researchers in the 1980s and 1990s. In response to this, Hopkins researchers asked these communities what would be the most helpful thing that the researchers could do for the communities, and asked the communities and their leadership to identify not only the most pressing need for the community but where there was a need that the researchers could help with. I can’t recall which community specifically brought up the challenges of supporting expecting teens in the first few years of their children’s lives, but Hopkins built a program to train paraprofessional community health workers to go to the homes of expecting teenagers and new parentes and deliver care and education to the birthing individuals. The program worked with the specific population that the community identified, they elevated individuals in the community with the training to deliver this care and created jobs, they improved quality of life measures for these new parents, and they helped heal the relationship between Hopkins and the community. The intervention was such a success that it spread to the other indigenous communities. From there, it was again successful, leading to international recognition and replication.
First, we have to acknowledge where it has not been done well before. Across healthcare systems, in cities around the world, researchers and physicians have taken advantage of their communities. It is almost a universal rule that a community was taken advantage of at some point. It might seem like a quick fix to say that we’re not like the other people who were here before, but I think we need to prove that before we ask anything of our communities. To do this in the future, whenever I look to start a new program or a new bit of research, I shall first spend a significant amount of time (on the order of months to year if possible) getting to know that community first. We have to get to know them in a way that is not tainted by power imbalances. For us, that means not as physicians. Although that is such a part of our identity after these four years (plus residency to drive the point in further!), suspending this identity and getting to know a community from a place of humility and appreciation is the first and most important step to doing this well in the future.
Megan, I love that example of providing help for expectant mothers! That’s a problem I never would have thought about, and it shows the power of the community having a voice and guiding research. I also think that it’s important that you noted that based on that feedback, they incorporated a paraprofession health care team to go and deliver care and education. It’s the most important/most tenuous step to go from feedback to action, but I think it speaks very highly about John’s Hopkins being committed to serving the community.
I’ve seen community voices left out when research or service projects prioritize academic outcomes over meaningful connection. For example, in medicine, compassionate care is often discussed as a value, yet the systems that guide research and clinical improvement can unintentionally overlook the lived experiences of the people we serve, much less the physicians or clinicians active in this work. I’ve noticed this disconnect in larger projects where data are collected about patients or clinicians but never shared back in a way that honors their contributions or informs their care. I continually work to integrate these opinions into my research everyday, in ways that honor their work and incorporate it into a platform where all healthcare workers and patients can see how many excel in the way they care for others.
I’ve also seen this done well—such as in the Spanish elective free clinic, where we students strive to meet patients where they are linguistically and culturally. Translating information, listening deeply, and adapting care to the patient’s story transforms data into compassion in action. This tangibly unfolds in many of our outreach projects from clinics to service projects. Better yet, the work is sustainably kept, through following LC classes and continued curricula.
Community input should shape not only what questions we ask but also how we interpret and share results. Similarly, good leadership allows one to incorporate many voices, recognizing the many gifts and talents of all on the team. In active partnership, both the community and the research team have to share a common language, one that provides a unified front with goals and a shared vision.
In my own work studying healthcare delivery and referral systems, I’ve seen how data alone can fall short if it isn’t grounded in the perspectives of those it represents. By including patients, volunteers, and clinic staff in discussions about our findings, we can ensure that our conclusions lead to meaningful change rather than just publication. Every one involved should feel apart of the conversation and have a voice at the table.
As we approach residency, we enter into yet another stage where we can use our voices to ensure those we care for come first. I think you’ll find that your service to others informs your work with all you serve. In any specialty, fostering unity among those we serve benefits our patients, our community, and us alike. Primus Inter Parus – First Among Equals
I think you make a phenomenal point about building trust! I find that it’s an under-estimated yet foundational aspect of community work. Especially among underserved communities, trust can be especially difficult to gain due to the history of unethical research conducted and the harm that did. It really speaks to the importance of prioritizing the people over the project as well. The project can only be successful if there is buy-in, and buy-in can only happen where there is trust. I also recognize that the time and resources needed to go into communities may not always be there, but there are usually ways to be intentional and strategic.
While in my MPH program, I had the opportunity to intern with the Illinois Chapter of the American Academy of Pediatrics (ICAAP), where I helped coordinate a health equity initiative aimed at increasing access to healthcare for refugee and immigrant communities in Chicago. The initiative primarily targeted pediatricians at Federally Qualified Healthcare Centers (FQHCs) by providing training on barriers to access and trauma-informed care. Following the training, pediatricians were encouraged to implement 2 changes in practice that would promote better access to and utilization of care. The results were shared with members of the ICAAP and other pediatricians. In this case, the community being served wasn’t presented with the data, and their voice was left out of the initiative. Given that many of the refugees primarily speak a language other than English, it likely added a layer of complexity in both obtaining input and presenting results. However, this would have still been possible given an intentional effort to include those being served by the project
In the future, to ensure that community inclusion is well done, I plan to take a proactive approach and integrate community involvement into several steps of the activity. Even before creating an initiative or conducting research, knowing the community I seek to serve would be a priority. That requires spending time within the community solely for the purpose of building relationships and gaining understanding. It’s at this stage that crucial information and perspective from the community can truly shape the direction of what will take place. I would also prioritize informing and updating the community before other interested parties. True inclusion requires treating those being served as more than an afterthought, and by establishing the role of the community early, I believe member voices will receive proper recognition and their input and feedback will be valued.