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.
During the summer after M1 year, I worked with the Center for Closing the Health Gap – an organization whose main focus is improving health equity through CBPR and related interventions. My project was to create a booklet/guide that would provide health eating guidelines, preventative health screening guidelines, and other suggestions for healthy living. At the start, I felt like there were so many different things I could include, but I wasn’t sure what would be most valuable to the community. So I held 3 focus groups of residents from majority-Black neighborhoods in Cincinnati to ask them about their existing health knowledge and what they hoped to get out of the guide. This was one way of including community members in the work, but it was limited in scope. We presented the data at a poster session, but did not specifically invite community or focus group members to see what we had learned. Nor did we continue to involve the focus group members as the guide book evolved. Time was definitely a restriction in this situation, which was noted in Community Toolbox as a reason to stick with more “traditional” research methods.
I think if I were able to do this project again, with more time, I would as 2-3 community members to partner with me in gathering information about what KIND of tool would be most useful. Perhaps a booklet was not the simplest way to convey the information. Our goal was straightforward – educate community members about preventing chronic diseases like diabetes and hypertension. But there was much more I wanted to know about baseline knowledge, barriers to health, and ways to create a meaningful intervention. Working alongside community members from start to finish would have helped us create a more valuable and impactful intervention. I would also directly share the information we had gathered at a community meeting and ask for feedback or observations from those community members. The sharing back of information is such an important part of CBPR but is so easy to overlook.
Taylor- thanks. Such an impactful learning experience of working with the community but maybe not fully serving the community. It is great that you have had some time to reflect on better ways/other ways/additional ways to engage.
I love your point about acknowledging our privileges as an outsider. We may think we know what the community needs from our own perspective or lived experiences, but we can’t truly know unless we ask for the community’s help and learn from them. I think there’s definitely a self-reflection element of doing community research that is so important. Sometimes we have to get out of our own head and remove our own ego from the project to give it its best shot!
Working toward that shared goal is so important. Building trust takes time, takes working at relationships, takes listening. And yes, it does take recognizing our privilege.
I really like your wording around the dichotomy of making yourself part of a community while still keeping in mind that we are ultimately outsiders with distinct privilege. You make important points around not influencing how the community voice is perceived or how data is interpreted, particularly as we may inadvertently apply our outside perspective incorrectly if the community is not included in discussions.
How have you seen this done poorly or well?
I don’t think we did the best job of this during our Learning Community project. We did present our findings to our classmates and faculty, as well as our partners at the Developmental Disabilities Services for Hamilton County, but we did not specifically present any findings to those with disabilities that we were trying to serve or those at the clinic that we worked with. We did speak with some people in the community and community partners about our project and received some input during the execution of the project. I think we felt our project wasn’t fully realized so we didn’t feel we had much to present back to the community. However, that aspect of looping back to the community is so important, and I think it’s part of what wraps up a project and makes it feel finished. It also helps to build trust with people, so they know the project was fulfilled and they can see what work was done. It also leaves them with a new starting point that can help continue the work that was done.
How can you ensure this is done well in the future?
I think making sure the community is always in mind and always involved during the project will help keep things focused on the right people and will hopefully lead to them being involved in the actual execution of the project. Having people from the community involved at every step ensures that their voice is heard and the project is progressing in a way that will actually be helpful for them. As to the part about circling back to the community, planning ahead as to how the information will be presented and scheduling or reserving a venue for the presentation may help hold people accountable to that plan. Making sure this summary is included from the outset and communicated with team members should hold people accountable for remembering this piece as well. I think having been through the process of a community research project before and reflecting back on it is helpful in making changes and planning better for future projects as well!
You are right. Involving community at the beginning of a project and throughout is key but not always done. How, who and time are usually the challenges. Are you involving the community leaders, the impacted population, the marginalized population? Identifying and supporting these voices as the academic / researcher lead will make your outcome stronger. Figuring out who needs to be at the table. When we started the Racetrack clinic, we needed to engage with the racetrack Chaplain who provided social services to the backside, the horseman’s association representing the workers and track ownership. All of these groups had buy-in for the unmet health concerns of the workers.
I’m considering this question of WHO needs to be brought in right now. We’re working to create a training program for Community Health Workers and including community leaders in this process is certainly the simplest approach, but does it incorporate all the necessary viewpoints? It’s hard to say.
Hi Jenna! I had many similar thoughts when looking back at our M1 learning community projects. I feel like we also could have involved our community partner more into our project. It can be difficult to do so, but it is important to do so all of the same.
I completely agree with your point that looping back and sharing information about project findings with the community helps build trust – otherwise doing research about a group rather than with a group comes off at paternalistic rather than as a partnership. Keeping the community involved, in this case, would have helped us see what thoughts they had about the intervention and findings and would have helped center our project on their actual goals rather than our perception of their goals.
How have you seen this done poorly or well?
I think most of us, when reflecting on our M1 Learning Community projects, can think of things we did well and did poorly. For example I remember my group went into the project with large aspirations and ideas of how we could help our community partner (cooking for the family). However, as frequently happens, we all got caught up in our other commitments in medical school and with our studies, and we had to adjust. Therefore, we were not able to do all that we had committed and promised to. Similarly with our presentation, it was a bit rushed. It was easy to get caught up in the exams and other things going on, and so we didn’t spend as much time on our presentation as we probably should have. And we didn’t involve our community partner in the presentation the way we should have. In hindsight, we should have involved them from the beginning, working with them to create the presentation instead of working to create the presentation for them (and the school) without their continuous input. I think that they could have given us good insight into our results, and helped us interpret them in the specific context of their program and participant population.
How can you ensure this is done well in the future?
I think that I can ensure to do better in the future by keeping what I said above in mind moving forward. It is incredibly easy to have big aspirations for projects before realizing how much work it actually takes to do that, and adjusting to fit the realities. Instead when thinking of goals, thinking of what it takes to reach those goals is a good first step. I also think being in regular communication with the community partners is an important consideration, as they often have insights we won’t have by the nature of their position and history of working with their participants.
1. How have you seen this done poorly or well?
The LC research project conducted by my group did not engage the community voice very well. We focused on finding ways to improve patient centered care for patient in the ID/DD community during office visits, but we rarely if ever actually integrated these patients into our research process. A better use of our time during that project may have been developing a focus group of people with intellectual and developmental disabilities to better understand what concerns they had with their healthcare – perhaps there were more pressing concerns for them than improving patient centered care, but we did not know because we were too focused on answering a question we assumed would be important for them. Conversely, the research Dr. Kazimierczuk is doing right now to improve nutrition for pregnant women in the community is centered around the actual needs of the community; she has found ways to engage their voice when developing her research plans and has encouraged Jenna and I to do the same as we work on our mapping portion of the project.
2. How can you ensure this is done well in the future?
To make sure the community voice is heard in research, I think it would be best to make sure the community is engaged in the whole research process. For example, establishing a board of people in the community who you can reference throughout the research process would be helpful; these would be people representative of and representing the community you are focused on, and they could provide feedback and insight as you develop your research question and implement interventions. Furthermore, communicating findings back to the parties of interest at the end of the study is an important step, but researchers should find ways to share the findings with the community at large and not just whatever small board or reference group they formed. By doing this, the researchers will be able to use all the community voices and feedback to adjust future iterations of the research
I think you make a great point of establishing a board of people in the community that you can draw from. Considering where to get community input can be overwhelming at times, but establishing a board before the project begins can set you up great for the remainder of your project. I also really liked the comment you made on another post about the difference between doing research about a group vs with a group. I agree that it can come off as paternalistic, and it may actually hurt your relationship with your community in the end.
I had a very similar experience for my learning community’s project and in my instance there was not great communication between our LC and the community partner throughout the project. As I reflect on the experience, I completely agree that making sure that you involve the community partner throughout the research process and communicate the research results with the interested parties. Looking back, that is something that I wished we did more of during my LC research projec.t
Prior to starting medical school, I had the opportunity to participate in community based participatory research in maternal health. The project was mainly qualitative in nature, and we interviewed patients and doulas in the community to explore their perspectives on cultural competency, racial concordance, and mental health support in doula care. It was a great example of community scholarship done well: the community partner was a local doula company that was engaged in the project from start to finish. Having the practicing doulas who see the challenges experienced in their field first-hand help develop the conceptual framework of the project, suggest focus group discussion questions, conduct focus group discussions, and aid in data analysis and interpretation greatly enriched our research experience. It felt like a true “redistribution of power” as mentioned the video above given the history devaluing of the doula workforce. There we even community stakeholder meetings at the beginning stages of the project to get feedback on our materials / methods which allowed us to course correct early on to ensure that our work was truly reflect on community needs. Two doulas served a co-authors on the resulting publication. I hope to module this kind of collaboration in my current and future partnerships! Approaching my current community partner with the mindset of “how can I use my expertise / experience to help further your goals and agenda?” was the starting point that I allowed us to decide on a project focus together!
1) I think a situation in which the community voice could have been better utilized was with our LC project. Our group did a great job of finding a need within our community which was to combat social isolation, however when considering the type of questions we would be asking within the community to collect data, and our initiative to combat the social isolation itself, we didn’t really take into account community member input. I think our concept was a good one in theory, but I think asking community members about their needs, and if they had any ideas on how we could help them or their families/friends with social isolation could have led to a better outcome. The difficulty with this though, as many other classmates have pointed out in their posts, is the amount of time it requires to fulfill such a project properly. All of us in the group had many other academic responsibilities at the time, and I don’t believe we could have had the time required to adequately engage the community voice. We were able to collect data and demonstrate the prominence of social isolation within our community however that data was never presented to the community itself which is something the community could have definitely benefitted from.
2) Ensuring the community voice is engaged moving forward is extremely important, and I think it requires having community input right from the start. At times, I think we can get caught up in what we think is a great idea, or have many aspirations when considering a research project or scholarly activity, but it’s important to take a second and ask if it’s something the community needs, and if so, what the community thinks would be a good way in approaching the project. At the end of the day, if it isn’t benefitting the community, then it may not have been worth pursuing in the first place, and time could have been better spent mutually working on a project that would help. I think this is much easier said than done, and I think it takes working with a team that is passionate about the goals and outcomes, and has the time and the resources to ensure the project is done well.
Hem, well said. I agree, the LC group I was in came into the project initially with preconceived ideas. I think it’s because the students were so eager to help, but fortunately, the community partner gave us 3 options they identified that would benefit the community. So we ended up doing a project that was beneficial. And that project was presented to the patients. All that to say, I think we were lucky to have the community partner stop us in our tracks and redirect us, but it seems not everyone had the same situation. Therefore, we all have to remember to think about this step before implementing any initiatives. I think of a needs assessment as step 0, and have seen very successful community projects that did a great job of starting at this step!
Just like many others on this page, as I reflect upon my learning community’s project, I really think my learning community had significant room for improvement when it came to incorporating the community voice in the summarization and presentation of the findings. For our project, we created an informative video about tuberculosis for the Hamilton County health department to use and educate their patients with. We used a pre and post quiz to assess the video and the information in it. While I do think that this is a valid way to measure some outcomes of the video, I think it left out a lot of qualitative data. I do not think we accurately captured patient’s experiences with the video nor the community partners’ thoughts about the video. I also do not remember consulting the health department about the project. When I reflect on the experience, I can only remember giving them the video and the survey and asking them to show the video and get people to fill out the surveys. The health department had no say in the assessment methods or the summarization of the final results, and the first time they saw the finalized data was during our poster presentation.
In the future, one big thing that I can do to make sure that the community voice is not left out of the summarization and presentation of the data actively involve them throughout the project’s duration. That means working with the community partner during the development phase to ensure that they have a voice in how data is collected and analyzed. In addition, frequent check ins during the analysis phase are essential to ensure the community partner is informed of the results and able to discuss with me about the significance of them.
I’ve seen both effective and ineffective approaches to incorporating community voices in program planning. A positive example is Bearcat Eye Service (BES), where we conducted a needs assessment before launching the clinic. This assessment validated the need for our services, helped us understand the community’s specific needs, and was instrumental in securing grant funding for essential equipment. On the other hand, I’ve been part of groups that approached communities with preconceived solutions, often overlooking the actual desires and needs of those they intended to serve.
To ensure BES continues to succeed in this regard, I’m working to regularly survey our patients, Healing Center staff, and BES team members. This feedback will provide a comprehensive understanding of how we can improve and adapt BES to better serve our community.
I think collecting feedback is a really great way to ensure the goals of a project are being met. I also appreciate that you are collecting feedback from both your community partners and patients to have comprehensive perspective on the progress being made. I think that truly reflecting on feedback and making adjustments will lead to your project addressing the needs of the community in the most effective manner.
Community-engaged scholarship is very important. As discussed by Dr. Jacquez, when community members are not involved in the planning of the project, it can lead to lack of effectiveness and success of the project. This is unfortunately an issue in the academic world when conducting studies to understand outcomes for diseases as well as studies aiming to find new treatment for diseases. For instance, there exists striking disparities among cancer patients. Members of minority communities, specifically Black/African American patients, are more likely to have negative outcomes and increased rates of mortalities. This is due to a multitude of reasons ranging from socioeconomic barriers to provider-based barriers as well the fact that these patients often present with more advanced disease. Despite this reality, minority communities have poor rates of participation in clinical trials. I have seen this displayed in clinic as the medical community has still not found a way to fully engage minority communities in clinical trials. Many are working to overcome this lack of representation and work towards more equitable care. A research project I was involved in during medical school worked to understand that poor receipt of surgery for minority patients with complex malignancies. We conducted surveys and interviews to understand barriers to care and focused on those barriers attributable to the healthcare care system (i.e. provider-based issues) that could be modified. We strived towards recruiting participants for the study from minority backgrounds. The results of the study have been used to created quality improvement initiatives at UC. I feel that this study aimed to solve disparities within a minority community by hearing directly from those affected and created solutions with their input in mind.
1. How have you seen this done poorly or well?
I have seen this done particularly well through working with the RRP (Recurrent Respiratory Papillomatosis) Foundation, who advocates for the community of patients with RRP while working alongside clinicians and researchers in the field. Historically, RRP was managed purely surgically, with surgery scheduled as needed to remove epithelial growths from the vocal cords. Although this approach provided immediate benefit to symptoms such as voice changes and difficulty swallowing, long-term patients suffered high morbidity from complications of repeat surgery over the course of their lifetime. Patients with severe cases underwent hundreds of surgeries, but even those with less severe clinical courses undergo quite a few surgeries, each associated with risk of damage to the airway. As adjuvant treatments have been explored as alternatives to surgery to treat the disease, the RRP Foundation has been instrumental in collecting the patient voice and presenting it to the community. They have done this through the Task Force, which includes representation by their Patient Advocacy Committee (PAC), and through a biennial Roundtable meeting. At the Roundtable, expert researchers and clinicians in the RRP field are brought together alongside the PAC to discuss results of research, debate controversies in the field, and set goals such as writing and publishing consensus statements. These discussions and publications highlight the voice of the patient community, in the form of PAC representatives as well as formalized surveys that the Foundation conducts.
This representation of the patient voice has had an enormous impact in shifting the approach to treatment of RRP. A recent email survey by the Foundation helped inform and support a recent publication that included a consensus statement generated from the 2022 Roundtable meeting. This survey highlighted the complications that patients experience from the repeat surgeries and the desire from patients to reduce surgeries as much as possible, even from initial diagnosis, by exploring adjuvant therapy options as first-line options.
Recently, I was fortunate to be invited to participate in the more recent 2024 Roundtable meeting and observe this process. As FDA approval is expected in 2025 for a new medicinal treatment for RRP that has shown robust efficacy, the 2024 Roundtable used working groups and guided conversations on how this new treatment may be incorporated into the workup and future guidelines for approaching treatment, integrating therapeutics with surgery. The Foundation did an incredible job of making sure the voice of the RRP community was heard throughout discussions, and it was clear many times how that perspective shaped the direction of conversation. For example, clinicians preferred to wait to establish a disease severity baseline, while the patient community expressed strongly the preference to be informed of all options, including medicinal, from the time of initial diagnosis and that every single surgery avoided had benefit to patients. The work that the Foundation does to cultivate a centralized database of patients, execute surveys to facilitate knowledge distribution and collect research, and bring together both physicians and the community being treated has made a huge impact on moving the approach of treating RRP more towards therapeutic interventions, as desired by patients. I think that the efforts of the RRP Foundation are a great example of how community research can be included and inform the direction of research.
2. How can you ensure this is done well in the future?
I think that it is easy to forget that no matter how immersed in a community we become through research or service roles, our perspective can vary significantly from that of those in the community. It is probably easier said than done, but keeping this in mind and including direct representation from the community seems necessary. Having a formalized representation, such as the Patient Advocacy Committee in the RRP Foundation or patients/patient families in attendance at the RRP Roundtable Meeting, seems key. This is important both at the initial planning stage of any research, but also in disseminating information and findings that may spark next steps. On a personal level, I hope to do this in the future by being attuned to seeking out the community voice and perspective, taking the time to listen, and supporting channels of communication.