As part of our effort to better understand approaches to community-engaged research and how they may help ensure research is equitable and actionable, we embarked on a journey to learn from those doing it well (learn more in our introductory blog post). Ms. Andrea Jones and Dr. Kenneth Wells graciously agreed to sit down with us to discuss how they employ a Community-Partnered Participatory Research (CPPR) approach, and their experiences doing so with Witness for Wellness and Community Partners in Care.
During the interview, Ms. Jones and Dr. Wells shared a number of enlightening insights into so many facets of their work and CPPR, including the principles; how to identify who to engage with in the community; strategies for building partnerships and trust; the benefits and some of the challenges of CPPR; and some of the systematic barriers to employing the CPPR approach. In this post, we’ll share a selection of the key insights we gleaned from the conversation, but we encourage you to take a look at the entire interview transcript to learn much more. There are several illuminating nuggets that can be used to build partnerships and engage with community members while, or even outside of, fully embracing the CPPR approach.
Fostering Partnerships: A Key Tenet of CPPR
Unsurprisingly, one of the keys to Community-Partnered Participatory Research is building and fostering true partnerships with members of the community. As Dr. Wells shared, CPPR’s “core principles [are] two-way knowledge exchange, equal power sharing, respect, and trust development, [and] those core principles [should be] applied across the project.”
The work of ensuring that those core principles are realized and those partnerships are established takes both time and resources. This work has to be funded and intentionally included in all aspects of the research process, from the very beginning as Ms. Jones explained:
“So it’s not just showing up and saying, ‘I have this research project,’ but having community input into it throughout the whole process from putting together the proposal all the way to dissemination… And then also understanding that that takes time, probably more time than most researchers are used to spending on projects.”
Ms. Jones went on to explain that embedded in and central to community-engagement and partnership is “listening to every voice, so every voice at the table counts. Making sure that everyone's voice is heard… and understanding that community isn't just people at the table, it's also the larger community around it that [the work is] supposed to be trying to help.”
Another core tenet to CPPR, and partnerships in general, is the need for transparency around decisions that are made throughout the project, such as which measures are used, what data are collected, interpretation of the findings, how the findings are shared back with the community, etc. As Ms. Jones shared, “transparency is really important, making sure that everybody knows what's going on. It's not like a poker game where you're trying to keep your cards to yourself.”
Building the Partnerships
During the conversation, Dr. Wells and Ms. Jones highlighted several concrete exercises and strategies for building relationships and trust. We link to several below in the Tools & Resources section, and we encourage you to peruse the entire interview to get their insights on using them. A couple of exercises focused on figuring out what everyone involved in the partnership is hoping it will result in, both for themselves and for the community.
One approach is to work together to identify the 3 Vs; the Vision, the Valley, and the Victory, as explained by Ms. Jones.
“The Vision is - this is what we want. This is where everybody kind of comes together and this is our ‘pie in the sky’. This is our vision. The Valley is where we do the work and then the Victory is where we celebrate once the work is done. And the thing with Victory is that Victory can happen at all stages of the project. It can happen during the vision stage. So, for example, everybody comes together and all decide, OK, this is what we want to do. It can come during the work stage at the Valley. So, for example, we want a community partner that we've been trying to get and they've been kind of hesitant and we finally get them on board. That's a Victory. And then there's the larger victory at the end of the project, once we start publishing and things like that and we've already collected the data and we've shown that whatever we were trying to show really works.”
Figure 1. The Vision, the Valley, and the Victory of community engagement (Jones et al., 2009).
There are a lot of approaches to building these kinds of partnerships and understanding the perspectives and “wins” for each group. Dr. Wells shared one exercise they’ve used, in which there’s a ball of yarn that folks toss to each other, calling out what their “win” is for the proposed project.
“In an activity like that, people will open up and say things that they would not just share spontaneously, like they might say, ‘Oh, I'd love to get an article.’ They would never say that, right? Or ‘I want my son to get help with his problem.’ And when people are sharing in that way, then you really know what this group wants to get and how to align people to have successful engagement in doing a complex project.”
Identifying the Partners
Engaging the right mix of community partners and participants is as much of an art as it is a science. It is an iterative, social networking process that taps into a web of relationships and allows for multiple points of entry over an extended period of time, as Dr. Wells explains:
“And then we started having our council meeting and we would meet, you know, every two weeks and we would say, who's needed? The pastors, the barbershop, the hairdressers, the homeless shelters, and people would start calling out. And we'd start, you know, inviting people in and they would have more suggestions of who to include. So that's also another aspect that HAAF (Healthy African American Families II) and Loretta Jones used to emphasize is the importance of social interaction, not only to engage stakeholders, but to find out who's relevant. So having some kind of open party and then people would show up and get a little food or something and then they're chatting on the side about the project, so the importance of really intimate connection and social activity, along with the, you might say, the intellectual process and so on.”
Additionally, as noted above, the community is not just the people actively engaged in the research process. There should also be continued engagement with the broader community at various points throughout the project. There is not an explicit “formula” for this type of engagement, but Ms. Jones discussed some of their tactics, one of which includes conferences held specifically for members of the community.
“We would have conferences, usually throughout the project, like Dr. Wells said, just to see if this was something to get communities buy-in and input and things like that. But then throughout the project to report back our findings to see if we were doing it right. And they’d usually be daylong conferences. This was pre-COVID, of course, but at lunchtime there was lots and lots and lots of networking and new partnerships forming and business cards being exchanged when people met new people. So in, and even bringing others into our project. So, yeah, the social interaction is important.”
Ms. Jones went on to emphasize that these conferences are not just one offs.
“There's not just a conference at the beginning and one at the end. There's conferences throughout, so that we can continue to keep the community engaged so we can let them know, 'Yes, the project is still going on, so we can still, you still have an opportunity to join.' And also so that we can provide information back on this is what we've done.”
The Benefits of CPPR
The benefits of CPPR are many and multi-faceted - from ensuring that the research is well-grounded and the interpretation of the data are reasonable, to disseminating the findings in an actionable and meaningful way. From our conversation, it became abundantly clear that, when approached authentically, there are benefits to the partners involved in the project, the broader community, and the agencies operating in the community. When it comes to those involved in the project, understanding the win-wins is important, as Ms. Jones explained.
“The win-win is, everybody gets something. And everybody's win might be different, but the researcher, maybe it’s some publication or showing that his hypothesis is correct. For a social service agency, it might be access to more resources or meeting people who may be able to partner with them. For a community member, like me, part of my win was learning. I learned to do data analysis… And to have my opinion matter in such a way that maybe I can go on and help other people in my community, that's a win. So that's the win-win situation.” (See Table 1 for example wins for different sectors.)
|Children/families||Better daily lives|
|Community organizations/schools||Community, political, financial support, recognition, networking, resources|
|Healthcare agencies||More efficient or effective care, increased market share, positive image, tax write-off|
|Government||Improved services, public trust in services or research|
|Universities||Greater impact, partnerships with 2-way knowledge transfer|
Table 1. Find the wins: Incentives for engagement (Wells, personal communication)
Additionally, when it comes to the broader community, the periodic touch points can benefit individuals in the community as well as the research project. For community members, there is the acquisition of knowledge that can aid in their own decision making, deepen their understanding of certain topics, and in some cases (e.g., autism and depression) reduce stigma, as Ms. Jones highlights below.
“When community members learn, when people leave our conferences and they're so engaged and they're still talking about their day and they're still talking about the topic, and “I didn't know that”. And the things that they learn. So yes, the knowledge, the way we've learned, the things that we've learned and also reducing stigma on some things.”
“We were talking about depression because initially we didn't really use the word depression because that automatically had a connotation of ‘you’re crazy’ and people went ‘I'm not crazy.’ So we used ‘the blues,’ we used ‘I’m feeling down.’ We used stress. Anyway, we were at a meeting and we were talking about depression, describing, what it looks like, what it feels like, and you can literally - there were…patient-members from [the Asian American Drug Abuse Program] who had substance abuse problems and you could literally see light bulbs go off in their head as they realized that they may have had depression because we did talk about self-medicating. And they realized that they may have had an underlying issue with depression. And that in using whatever drug they were using, they were self-medicating. I mean, eyeballs lit up. I could see lightbulbs going off.”
The benefit of the perspective provided by those with lived experience is invaluable to understanding the data and interpreting the findings. Ms. Jones describes her own experience of participating in a meeting in which they were discussing some of the findings:
“And the researchers were saying they thought it meant this and this was one of our first data analysis meetings and all the community members, we were all new to it. We’re looking at each other thinking, ‘OK, whatever.’ So one of the academics noticed that we were looking at each other, and they said, ‘Wait, do you have a question?’ And finally, one of us was bold enough to say, ‘That's not what that means, that answer that was given to that question. That wasn't what that meant.’ So when we explain what we thought it meant, the researchers were nodding like, ‘Oh, I see, I see.’ But the thing is, we live in that community, and this survey has been given to people in our community. So we knew what the answer was, whereas they had no familiarity whatsoever with that community. If we hadn’t been at the table, their answer would have been totally off base."
Broadening the scope of a project based on a much deeper understanding of the context and the needs of the community can dramatically increase the potential for positive impacts and overall actionability. Dr. Wells shared that in some cases it was the community that led to the expansion of surveys and data collected to include measures around homelessness and life stress events. In some cases, community sparked the idea for exploring the impacts of the CPPR approach itself, as Dr. Wells shares below:
“We had a conference at RAND with the community and the investigators to review what did we learn together? And the community asked the question, 'Can we have data that really shows that this approach makes a difference?' Would there then be more commitment to community engagement to deal with health?"
"And that led to the efforts to do a randomized trial around the added value of this community engagement approach to improve care for depression in the community. And that led to the Community Partners and Care Study, which was the first applied study to win the Association of Clinical and Translational Science Team Science Award. Over 100 community members and about 15 academics won that Team Science Award. It was also part of a Cochrane Collaborative Review that said it was the only rigorous example of the added value of community engagement to impact the health of under-resourced communities; and for health generally, not just in mental health.”
Supporting Community-Partnered Participatory Research
Despite the many benefits of community engagement on the research process, from setting the research questions to interpreting the data and sharing the results, the academic and grant-making infrastructure and values aren’t always set up in a way to support this type of work. Dr. Wells highlights some of the challenges to doing this kind of work:
“It takes on the academic side a very intentional plan for equity. You need to, one needs to budget for the time of community partners, to have ownership of things that are developed. The community co-owns with academics, so we had to have a whole special memorandum of understanding (MOU) that the intervention materials that were developed from our Community Partners in Care Project were co-owned by Rand, UCLA, and on behalf of the community. You have to put in a travel budget and, if let's say they don't get it, the community members need a travel budget to go to conferences. You call the project officer, you explain the model and let's say they say, ‘Oh, we'll do half of it,’ then you have to find the other half from some other sources. And this is why to do a project as large as Community Partners in Care, we needed additional time. It took us instead of five years, seven years, so we had to negotiate that… And all of it is worth it, but it takes a very intentional mindset and not burdening the community with it, so they're always fighting for their own equity, you know?”
The above highlights are just a few of the amazing insights we learned from Andrea Jones and Kenneth Wells. We strongly encourage you to read the entire transcript to learn more about their partnership, the programs they are collaborating on, the ways they approach relationship building, and much more.
Stay tuned for our next post for learnings from a discussion with Dr. Nina Wallerstein and Ms. Harriet Yepa-Waquie about their work employing community-engaged research and their current project, Engage for Equity.
Tools & Resources
For those interested in implementing some of the practices highlighted by Ms. Jones and Dr. Wells and realizing some of the principles of Community-Partnered Participatory Research in your own work we encourage you to take a look at the below resources.