Full Transcript from the Interview with Ms. Andrea Jones and Dr. Kenneth Wells

Dakota Cintron (DC): The first question I had was, what approach or approaches do you use to engage under-resourced communities? How do you determine who the relevant stakeholders are in these communities? Can you describe what successful community engagement looks like?

Andrea Jones (AJ): Successful community engagement, for the Loretta Jones model, means that community is involved in the research from the beginning to end. So 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. So partnering, having community partners on publications, with data analysis, throughout the whole process, that's what successful community engagement looks like, I think.

And then also understanding that that takes time, probably more time than most researchers are used to spending on projects. Listening to every voice, so every voice at the table counts. Making sure that everyone's voice is heard.

And just a little story short, really quick. After Dr. Wells, promise. When we first started Witness for Wellness, there was a young lady who was one of the community stakeholders, and she was always quiet at the meetings, always. She never said a word. But afterwards she would come and she would ask me questions, and they would be good questions, things I hadn't thought of. And at the next meeting, I would bring them up. And then for this particular working group, it was the Talking Wellness working group of Witness for Wellness, we had decided that because we were trying to get so much accomplished in between our monthly meetings we were having conference calls and this young lady would come and we always paid stipends.

But for these conferences calls in between meetings, we weren't paying stipends. She would come faithfully every Tuesday evening at 5:30, and she would sit with me and listen to the meeting. I would put the phone on speaker, and when she had a question, she would gesture to me, so nobody would know she was there. I would mute the phone. She'd ask me her question and I would unmute and ask the question, and I just want you to know she made me look so smart because every time I'd ask those questions, they’d say, “That's a good question, Ms. Jones.” So finally, she learned how to unmute the phone herself. She stopped doing this and she’d unmute it herself, and then she'd ask her questions. So I asked her, “How come you just don't ask the questions yourself?”

You see, they’re good questions. She just was not comfortable doing that, but I think it goes back to what Miss Loretta said - she wasn't necessarily voiceless. She just wasn't comfortable using her voice. And Miss Loretta said that part of Community-Partnered Participatory Research is being the voice of the voiceless.

Kenneth Wells (KW): So the model that we use is called Community-Partnered Participatory Research with a variant of Community-Based Participatory Research that was developed through Healthy African-American Families in collaboration with Charles Drew University and USC and UCLA and Rand.

And it has core principles of two-way knowledge exchange, equal power sharing, respect, trust development, and that those core principles are applied across the project. It has an organizational structure which is having, for a given program, having a council of stakeholders that are leading the effort, working groups, typically up to three on specific aspects of the problems. And then the work groups report back to the council and then to community forums where it doesn't go forward until the community, a larger community, whether it's in a church or a movie theater, hears the plan and has a chance to give input.

And then there are stages, and I'm going to ask Andrea to talk, to show her hand and talk about the stages.

AJ: So, there is the Vision, the Valley, and the Victory. So the vision is what we want. This is where everybody 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.

Silhouette of a left hand with the word Vision between the pinky and ring finger, the word Valley between the ring and middle finger, and the word Victory between the middle and pointer finger

(Loretta et al., 2009)

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.

And then one of the core principles, also, is transparency, making sure that everything is transparent. One example I'll give is from Witness for Wellness, but a different working group, I think it was the Building Wellness working group, and we were going to do a survey on depression. We had spent a couple of months looking at different surveys and the community members had selected the survey. We came to consensus on the survey that we wanted, but it was mainly based on community input because the community thought this would be the best survey for our community.

At the next meeting, they found out that we weren't going to use that survey and we were going to use a different one. After the meeting, I got cornered and they asked me, “You know, you said that our voice counted, you said this, you said that,” and I didn't know what to say, but I knew the reason we didn't use the survey that had been selected was because of cost and that the money wasn't in the budget. We didn't have enough.

So finally, I just broke down and I told them, and once I told them, they were like, “Why didn't you just tell us? Why didn't you just say that?” They told me at that point, that we hadn't been transparent as to why, why we didn't select the survey they wanted. So 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. It's not at all like that.

KW: The model that we just described has been applied over about a 25 - 30 year period of time to lots of different projects. There is a commentary that Loretta Jones wrote on that, on 25 years of experience with it. There's an article in JAMA that Loretta and I did.

There are a zillion papers out there. So there's a lot of documentation of that. And there are also manuals, because the approach even to running a meeting, it follows certain rules. Robert’s Rules of Order and, you know, various aspects of things, as well as the more informal rules like the one, the ones that Ms. Jones is talking about really supporting people behind the scenes and so forth. So there is a lot of documentation available.

And, in terms of the question of how do you determine who are the relevant stakeholders in the community? The key community leaders will ask that and often in the council meetings, there will be the question, who is needed? On the community side, on the academic side? And they're brought to the table and they may become part of the family and they may go on and off the bus and be there some of the time and not be there some of the time. And as an example of that, when I first got involved and learned about this model, I took Loretta Jones to lunch and shared with her what I had been learning about depression in our national studies.

I asked her, “Should this be an example of something we try to do with a community engagement approach?” And she said, “Oh, well, I'm going to go talk to my colleagues and get back to you.” And then about three days later she called me and told me she had talked to about 12 or 15 of her community members.

And she said, “Everyone says that we are not talking about depression, but we need to. So yes, we're going to do this project.” And then we started having our council meetings and we would meet 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 inviting people in and they would have more suggestions of who to include.

So that's also another aspect that HAAF II (Healthy African American Families II) and Loretta 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, so the importance of really intimate connection and social activity, along with the, you might say, the intellectual process and so on.

It's all part of the successful engagement. Andrea, does that make sense?

AJ: Yes. And then just to piggyback on what you said about the social interaction. 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 bringing others into our project, the social interaction is important. And the other part of that, I think, is it allows the community sell, the win-win, the two-way knowledge exchange. It allows community to meet people that they might not have ordinarily had a chance to meet and converse with.

And at the same time, it allows people who may be doing research on a community but they've never actually been in that community to meet some of the people that they may be doing research on in a social way, as opposed to asking them to take this survey or participate in this focus group. I think it helped each side to see each other differently. It humanizes people, right?

KW: And the win. Do you want to comment a little further on the idea of the win-win? Because that is really a core issue.

AJ: So the win-win is everybody gets something. And everybody's win might be different, but the researcher it may be some publication or it’s showing that their 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. I'm on publications. I can't tell you the first time I saw my name in print.

I did not know it was going to happen. I was just included as an acknowledgment in an article by Bowen Chung. I think it's one of the articles Dr. Wells sent you. He had me in a special acknowledgments section, and I didn't know he was going to do that. And when I saw the cover, let me tell you, when I saw my name at that time, I was on public transportation. I was showing people on the bus I didn't even know, “Look, that's me.” That's how exciting it was.

And when I got my first publication, that was even more amazing. So for community members like me to have an opportunity to participate in research. Really quick, one more story. When I first started working with Miss Loretta and Dr. Wells, I had a son who was in the Navy, stationed in Japan, and I was emailing him. We would email back and forth and I was telling him about my new job and the people that I was working with. And that's when I first met Dr. Wells, and I don’t think I’ve even told Dr. Wells this story. So because of the time difference between Japan and the United States, I didn't get his response back until the next day at work. And my son emailed me back in all caps, “Do you know all these people are?” with a bunch of exclamation marks.

And I didn't know what to think, because what do you mean, who these people are? Should I think good, bad, or what? They didn’t have Google then, but I looked up Dr. Wells and I found out who he was and that he's famous in the world of research in depression. Like he's almost Michael Jackson, right? And that's what my son was telling me. So, for a community person like me to be able to come into this world, be accepted, and have the opportunity to grow and learn and to be asked to do things like this, that's a win. That's a definite win. 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.

It might look different for everybody in the room, but everybody still gets a piece of the pie.

DC: Thank you for sharing that. That's really, really neat to hear that story of how you became involved with these projects and what it means for you personally.

AJ: To be honest, if I had known who Dr. Wells was when I first met him, I don't know. I mean, I probably would have been so intimidated. I might still be a receptionist. But I didn't know who he was. And he didn't come in like that’s who he was. He came in like a mister every day Joe, he didn't come in with the big giant head. He came in, super cool.

DC: Can I ask a kind of question related to your experience, Ms. Jones? Being a community member and becoming involved with this CPPR work, how have you seen the impact on the community that you live in? Do you see the results translating directly to the people in the community around you?

AJ: Yes, I actually do. For one thing. So we're in South L.A. and in South L.A. UCLA had a really bad reputation and people were really skeptical. And I think the only reason this project got off the ground is because of Miss Loretta, because she was a key stakeholder.

And I don't know if you remember who E.F. Hutton was, but he had a commercial, When E.F. Hutton talks, people listen, but when Miss Loretta spoke, people would listen. And UCLA’s reputation has changed. Maybe not flatly across the board, but it has changed. And a lot more people, a lot more agencies, and others see UCLA in a different light. I think this project changed the reputation of UCLA for our community, our pool of people.

Another way in which I've seen change, and this was early on in the project, when we were doing Witness for Wellness we were working with a community partner called AADAP, which is the Asian American Drug Abuse Program. They started back in the sixties. We had some of the young women who were in their program there. They were all patient-members who had substance abuse problems and they were part of our team and we were talking about depression. 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 could literally - there were patient-members there from AADAP - and you could literally see light bulbs go off in their heads 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 mean, I'm telling you I could see lightbulbs going off.

And so things like that, helping people understand. On all of our projects, because it hasn’t just been depression, we’ve done blood pressure and diabetes. We've done women's health. We've done pain. We've done autism. And all of our projects because it's a two-way knowledge exchange. 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 say “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. So for example, with our autism project, we did an autism conference every year until COVID - the last one was virtual. And each year we covered a different aspect of autism. And we had community members and professionals come up. But when you see the knowledge increase and you see, because there is a certain stigma to a child having autism… So when we had these conferences and we explained what it is and how it works and all these different things, you can kind of see the blinders coming off of people's eyes where, “oh, oh, I didn't know that.” “Now I see.” So those, those are the types of things that on my end I see. Other than the fact that I have some publications, and I’ve participated in data analysis and one last thing.

We were analyzing some data from Talking Wellness and there were three or four committee members there and there were about the same number of academics and researchers, and there was this one question. And the researchers were saying they thought it meant one thing. 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.” One of the academics noticed that we were looking at each other, and 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.”

When we explained 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 was 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. So those are just some of my perspectives. Dr. Wells, it's your turn.

KW: Well, I know we probably need to move to the next question, but on the issue of successful engagement I just want to comment that a lot of what the community uses is engagement exercises. There is a kind of formal approach to community engagement. And Andrea gave examples, and we have video examples and so forth. But, for example, to get the win-win that Ms. Jones was referring to, like the healthcare system, what's their win going to be? The community, what's their win going to be? Some of it can be personal. Some of it can be agency, some of it can be community-based. So, as an example of an exercise, there’s a yarn exercise with yellow, green, red yarn, one for community, one for agency, one for your own personal.

People stand in a circle and throw the yarn, while holding on to their part of the strand, to another person, “What's your personal win?” “What's your agency win?” And then suddenly the whole room is full of connected yarn among people and they've shouted their wins out.

Meanwhile, someone's putting it all on a blackboard, all the time for everybody, so we can then say, “OK, these three people should be on this committee because that's how they will get their win.” And during 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 a successful engagement in doing a complex project.

Anyway, so that's one example. But the point is that there are community engagement exercises and there are many, many examples that we use in various projects. Another example was an exercise where we played a game where people had questions about African-American leaders, “Who invented this, who invented that,” and other people had the answers. And people were searching for each other, those who had the question had to find the person with the right answer. You know, was it Martin Luther King? Was it a scientist? And, and this is how people discovered the successful histories of African-American leaders. And it was a discovery exercise that was fun, but also got people engaged in overcoming some of their prejudices.

So that's a core aspect of the engagement, these kind of exercises that are often created by community partners. And listening to the academics and what we deal with, what does it mean to have imputed data? So we would have some sort of a lecture and then we would have a game about making up for information we don't have, so that people could feel that imputed data was something you needed to do, right?

DC: That’s really really interesting, and it sounds like CPPR has a lot of components in it that can help facilitate community engagement and that there are a lot of conceptual frameworks to help norm the community members and the researchers around the work that they’re doing. So I think that that sounds really good. I really like the vision, the valley, and the victory hand piece too, I thought that was really nice.

How did you apply this approach (or approaches) to the issue of depression/mental health? What approaches were the most effective? What did you learn along the way about reaching (and/or engaging?) community stakeholders?

KW: 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?

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 health, not just in mental health. So I think from an Evidence for Action perspective, that was a fully community-partnered project that was a group level randomized trial with 95 agencies in categories recommended by the community - homeless shelters, barbershops, and so forth - to collaborate with health care agencies. The community helped with the design, what are the comparison conditions? They helped develop all the tools for the comparison conditions using this approach.

We actually hired community members to be trained by the survey group, to do the recruitment of people in these 95 agencies, to do the screening, to explain the value of the study, working with supervisors from RAND. And then that ended up providing evidence. The community also expanded the survey, so it wasn't just about depression, but about homelessness and life stress events, and so on. And that ended up showing that the community-engaged approach of collaborative, cooperative work across the entire community, compared to having the same tools to address depression, agency by agency, the same range of agencies, but the collaborative approach not only led to better mental health, but to reduced homelessness, reduced hospitalization rates.

There's an example of the win-win because you had to reduce hospitalization rates, which the health care systems really cared about. You had reduced homelessness, which the community had really hoped would happen, and you had reduced depression, which both the health care and the community organizations wanted. So that was an example of the win-win.

So, we could talk forever about Community Partners in Care, but we'll go on. I just wanted to make the point that it was a randomized trial that really came about because of the community's priorities for data, including our policymakers, and then that provided data around evidence for action.

DC: I think that's really great, and it does get to answering the next question I had as well (What did you find or are still finding in your work? In what ways have engaging stakeholders helped to develop evidence that can directly inform decisions for policymakers and community members?). One of the questions I have about what you just brought up, though, is when they were looking at doing this randomized controlled trial, did they look to see whether greater levels of community engagement were also associated with better depression outcomes? Was there any way that they evaluated the community engagement process and whether that was effective or not?

KW: The randomization was to test standard training in collaborative care for depression versus a community-engaged cooperative approach to kind of redoing the training. So it was a direct test of the community engagement aspect of the intervention.

DC: How many were in each arm of that trial?

KW: So there were 95 programs from 50 consenting agencies that were randomized, and from 93 then there were 4440 people screened and from 1322 depressed, 1,246 enrolled.

DC: That makes sense. And they're looking at that aggregate kind of effect for that group implementing the community engaged principles?

KW: Yes, and then also looking at subgroups like African-American, Latinos, you know, women, men. And there were significant effects for just about every subgroup, but somewhat different, depending on what their risk factors were at the beginning.

DC: Yeah, I think that that's really great. And to pull off that size of a randomized trial is really rare and valuable and that kind of gets into one of the potential additional questions that I had because we wish that that happened more often. And I would say for researchers and community members interested in doing a large community randomized trial like that, what would you say are the keys to success in terms of galvanizing political will, getting funding, facilitating community buy-in, successful implementation, and effective dissemination?

KW: Yes, well, it takes a lot and it takes a lot together. What was particularly powerful was just like we have me and Andrea here now, presenting to the funding agencies together as a team. So, when this idea was presented to the National Institutes of Mental Health (NIMH), they actually invited Loretta and I to go back and speak to the NIMH counsel to explain what was happening with community engagement. They sent the associate director of NIMH out to actually meet our community partners and get a direct sense.

They were kind of shocked and other funders were too. I mean, the Robert Wood Johnson Foundation funded part of this project and the National Institutes on Minority Health and Health Disparities, and so forth. And we always have our academic and community partners side by side because it just gives a very different voice and perspective on the value of the research, including to the community. We also engaged our funders and policymakers in our work groups. So I mean, for example, the co-chair of our policy board was Karen Bass, along with Cynthia Telles. Cynthia is now the U.S. ambassador to Costa Rica and Karen Bass is a Congress member. So, they were our co-chairs of our policy board and really helped us align with state and national policymakers to keep them aware of what we were doing. We also included representatives of our New Orleans partners, because they did post-Katrina version of this, not so much for research, but for dissemination for mental health relief post-Katrina.

We've shared these results with the Thrive Initiative in New York City and many other community partners. That doesn't mean we've taken over the world. It takes a lot of advocacy. It takes a lot of building.

The L.A. County representatives did somewhat of a version like this in trying to do more preventive mental health. The state is currently having us work together for COVID mental health relief, digital mental health resources, and so forth. But it takes a lot of thought. The data, the dissemination takes a lot of focused work. Andrea, do you want to comment?

AJ: I would look at facilitating community buy-in and effective dissemination. I think one of the things at the very beginning when we first started doing to get community buy-in was the conferences that we had. At the beginning of each project, really, even before we got it off the ground, having community members come to these conferences. We've had conferences with as few as 100 people up to, and this was for diabetes though, but we had a two-day conference at the Los Angeles Convention Center and with 1200 people on the first day and about 900 people on the second day.

So the community-partnered conferences that we do with UCLA and others, are probably the most effective way to get buy-in in the community. And that also goes to the second part, which is the effective dissemination. So like I mentioned before, throughout the project, there's not just a conference at the beginning and one at the end. There are 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. This is what we're doing. This is what we're learning. And also to get input from them, to make sure that even though they may not be a part of that work group, right this is for the larger community. Even though they're not part of the work groups or part of the project, in a way they are because we're still getting input from them. We're still providing information back to them. We're still keeping them informed on what we're doing. And so for me, that's I think one of the larger keys and that's the community-partnered part of this participatory research, understanding that community isn't just people at the table. It's also the larger community around it that it's supposed to be trying to help.

KW: And we do activities like talk on your radio show.

AJ: Oh, yeah, yeah.

KW: And you know, have newspaper articles, things to get the word out to the community in addition to the conferences. I think that's very important. And of course, we’ve presented at scientific meetings and we've done a number of presentations for the state and some other states and so on.

DC: And when you're doing those presentations, I guess you're keeping that kind of mindset of including community members in the participation, because I found that really interesting that one possible way to galvanize political will and to get funding is to demonstrate that there is buy-in from the community and that the community wants to do the research.

AJ: I got to go to Canada for an international statistical conference. I can never remember the name of it, but I want to say it was the American Statistical Association International Conference. But I got to go with Dr. Tom Belin. He asked for me to go with him and we presented together. So it's a huge conference and lasts a week, and we had 15 minutes of an hour long breakout session. The first three presentations were really technical. There was one lady from China, and she had this huge equation that she had to go to the next line to finish and I asked Tom, “Do you know what that means?” And he said she probably doesn't even know.

But that was just how technical that conference was. So like I said, there were three presentations ahead of us, each had 15 minutes. We were the last one. And afterwards we got more questions than anybody else. People were asking me questions and I was looking at Tom and he was like, look like, “Well, we got more questions than anybody else.”

Number one, I got to go to Canada, OK, who would have ever thought. But number two, people were really, really engaged in our little 15 minute presentation. So much so that I think a year later, we got invited to go to another conference because somebody who was in the audience that saw us speak and then a couple of years after that, we got invited to yet another place to present on that same topic. So, yeah, the academic and the community, like Ms. Loretta and Dr. Wells, they're famous for their presentations.

KW: I just want to add that it takes on the academic side a very intentional plan for equity. You need to budget for the time of community partners to have in the 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 two things: additional time and budget. It took us instead of five years, seven years, so we had to negotiate that.

And that's why you need the project officer at the table and then you need other funds. So we got like five supplemental foundation grants for added pieces and the PCORI grant and so forth. And it just takes that very intentional thinking of the resources that are needed. They need to be shared, the ownership needs to be shared. That may need to be negotiated with your institution. 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?

DC: Mmhmm. Mmhmm.

KW: I mean, they will remind me of that. Sometimes they’ll say, will you give me $50? You know, or something like that, but it really means it’s a shared responsibility, but we have to help our systems get it. So even advocating to understand that community members should be on the Institutional Review Board (IRB), that you know all of these differences. And that let's say an award is given, it's not coming to me, it's coming to the community. So it took time for people to get that, right.

AJ: And also pie in the sky, community members should also be grant reviewers. I know that's pie in the sky, but they should because sometimes, just like you said on the IRB, Miss Loretta used to sit on the IRB and Mrs. Aziza (Anna Lucas-Wright) still does.

But when you look at some of the information Miss Loretta used to provide, I mean she was really thoughtful in how she reviewed IRB submissions. And I know because I had to do her comments. She'd have me go in a system and put her comments in after she wrote them down.

And she was very thoughtful about how she did that. But at the same time, there were numerous IRB submissions that she sent back with comments and said, “No, you can't do this in my community when this needs to be changed.”

And I feel like for the grant review part of it, yeah. Because a lot of the grant reviewers they actually don't, like Dr. Wells said, they don't get it. They really don't get it. And we were fortunate in the project officer for CPIC, David Chambers, who really, really, really understood and worked with Dr. Wells and Ms. Loretta, so that CPIC could be a success. He got it. But that doesn't happen every day.

DC: Wow, you’re both sharing so much information. It's really wonderful. I know that we're here at time. If you have an extra few minutes, I guess I would be curious to hear your responses to question number five (How did this work affect your next steps or current goals (e.g., C-LIFE or courses you teach at UCLA)?).

KW: I'm OK with going on for a bit, if that's OK with everyone else.

AJ: Okay, I have about five more minutes because I need to get ready for the radio. Dr. Wells, I'm co-hosting today. We have a program called The Good News Radio Magazine, and usually I’m the program assistant, but I have co-hosted before and today our other co-host is out, so I'm co-hosting.

KW: Well, since you have only five minutes, why don't you say a bit about the teaching piece? So, Andrea co-teaches a two quarter course with me on community engaged research and health, along with one of our county partners, Dr. Anish Mahajan. You want to comment on the experience of teaching?

AJ: First of all, I didn't even know I was teaching a class with Dr. Wells. Loretta had a really, really busy schedule and so she would send me when she couldn't go. She would send me to meetings for her and I would come back and report back to her. And that's what I thought Clinical Scholars was because it's not really a formal class with the chalkboard and all of that. They do have texts to read.

But so I was going and I was about a year in and Dr. Wells and I were speaking at Charles Drew University of Medicine and Science and they introduced Dr. Wells, and Dr. Wells introduced me and he said, “she co-teaches a class with me at UCLA” and I was surprised. And he said, “Well, you do.” And I didn't know. But that experience for me has been, Oh my God, it's been. I get to meet the smartest people ever. I get to work with the smartest people ever.

I'm learning so much more from them than they could ever learn from me. And really quickly, Dr. Wells, this just happened last week. Remember my daughter, Kim? So my daughter Kim, at the time when all this was going on, she was in middle school/high school. She’s in her 30s and has two kids now. She lives in Virginia. And last week she was watching TV and one of the former clinical scholars, Kim heard her name. The news was on. She heard her name, which is Dr. Kavita Patel. And Kim said she was in the kitchen, but she ran in there.

She called me, she was so excited and she sent me a screenshot because she was so excited. “Mommy, mommy, I saw Kavita on TV.” I didn't know she was at the White House. She's one of my clinical scholars. She was one of the first scholars I met. I don't think I was doing class then, I'm not sure. But she was a clinical scholar. So even, clinical scholars, as you can see, affected my kids, my kids know the scholars. So it's been a really rewarding experience. And like I said, I've gotten to see so many of them.

Like I said, Kavita was in the White House under the health secretary in the Obama administration. Another clinical scholar right now is a White House fellow. So getting to work with people like these who are doing such big things.

And I feel like the Clinical Scholars course contributed to that. It's an amazing, an amazing opportunity. And I'm just truly glad to be part of it.

KW: We have a two quarter course series, 8 units in total, that we teach in the School of Public Health on community-partnered research. The first quarter is on all the principals and meeting partners developing the idea in partnership and being supported.

And the second quarter is on how do you integrate methods with rigorous science methods with rigorous community engagement, both qualitative and quantitative research. And then across those two quarters, they're developing a project, anywhere from the idea to the actual data, depending on what the project is and the time frame, because it can take two years to get a project started with this kind of planning activity. And so we co-teach together and that becomes very key. And then we have core faculty and core community partners that understand these goals, that support the fellows in their learning and in their projects.

And next steps for the work continuing, we are actually still doing papers from the Community Partners in Care Project, but one thing that came out of that as a legacy to Loretta Jones, who passed away a couple of years ago, is the Community Learning Institute for Equity and Healthy African-American Families II (HAAF II) has been the lead there. We've had a two year planning activity, and the question is, how do you have community members who really have the training to be equal partners and to be the Lorettas, the Andreas, and and really help co-lead an effort and have got the background, know how to do data analysis from a partnered perspective, etc.

So that learning institute is something we are working on and looking for funding for. And RWJF actually did the initial planning for a conference to plan that, which was great so that we had a small grant from them and…

Another example, I mean, HAAF is involved in a zillion different partnered projects, but another example for me is our Together for Wellness {CalHope} project for COVID relief and for free digital mental health resources where we have, in addition to Healthy African-American Families, we have community partners from all over the state representing different racial, ethnic, gender identity groups and so forth, giving us input, collaborating with us, in developing and tailoring resources, digital wellness resources for the state, which is a free resource now available online, called Together for Wellness.

Anyway, we're doing a formal pilot evaluation of that project as well under California Health Care Foundation, but the main project was funded by FEMA and SAMSHA to the State of California Department of Health Care Services, Behavioral Health Division. So anyway, there and there are many other examples the scholars are doing, each of them, some kind of project following this model. And that's how we try to pass on the approach and make a difference in the world.

DC: Sounds wonderful. Do you want to, if you have the time to speak to any challenges associated with teaching community engagement methods?

KW: Well, I think, I mean, we're fortunate in that our teaching really focuses on a fellowship program (National Clinician Scholars Program) that has this as a strong focus and we have fellows who are actually all clinicians, either physicians or nurses who are really interested in learning how to do this. But having the time, having the patience, I think understanding that not just in teaching but in doing this work, there are going to be conflicts in perspective and it's very important to understand that and to go through that.

I mean, one of my examples that I often talk about is when I was first learning to do this work myself and after about four months of every other week meetings dealing with depression, the community had a 20 minute discussion with me there on “What about my racism?” And some comments that I had made or whatever that made them concerned. And after talking about it for 20 minutes, someone said, “Well, Dr. Wells is right here in the room. What does he think of us having this discussion in his presence?”

And I said, “Are you kidding me? This is like the greatest compliment of my life that you can talk about your concerns about my racism in front of me. So this makes me feel I can do this work.”

So I think really understanding there will be conflicts, there will be reflection moments, there will be issues, and helping students to understand that. And fit what they can. I think having the patience, you know, helping support them in meeting partners.

So there are challenges, but it's actually very rewarding teaching. Because the students who come from an under-resourced community background, find it very meaningful to kind of reapproach thinking about it in their new role as a clinician leader. And for others it's like opening up, it’s like remembering what it's like to find yourself and remember your childhood or something like that. It's like a discovery process that’s really moving. Especially for me as a psychiatrist, so it's kind of like therapy in a sense.

DC: Yeah, I mean, we're all in this together, and the things that impact the community impact us and so kind of taking that head on. I'm sure you kind of come to realize things that you wouldn't have expected when you started. And it really sounds great that you're teaching these methods to students, and it's in a kind of colloquium setting where they have to go out and do a project. I mean, that's really, really fascinating. I'm not sure how many other programs are like that in the country. Do you have some sense of that?

KW: Well, there are definitely community-based participatory research models in many schools of public health and teaching. I don't know that many of them focus particularly on the intersection with clinicians. And with that we do have some social scientists and so forth in the course. But that, maybe, is a somewhat unique perspective and we have written about this approach both for the UCLA site and nationally across sites with the partnered research approach. There are six sites in the National Clinician Scholars Program.

But I would say from my perspective, it's been a very rewarding experience, though of course there are challenges, but it's overall rewarding.

DC: Sure. I mean, that's like most things.

KW: The difference between equity and equality is very important in this community work. So more resources are needed to establish equity. This is the picture where you've got the core council partners, the resident experts, and then the community.

Circle of influence model for collaborative research with overlapping circles that represent partners, resident experts, and community with bidirectional arrows between the three labeled planning, sharing of results, responsibility & authority, and goal setting

And this picture really was a game changer for me because it said the ultimate stakeholder is not the funder, it's the community. So the community has to buy in to what is being done. So I've always found this collaborative research picture very, very useful and it's published in an article that was before my time.

DC: Yes. I don't know if you're familiar with Dr. Tom LaViest. He's at Tulane University now. He talks a lot about that and how the researchers and experts often forget that they're part of the community and even the university is part of the community, and often they're the largest funder in the community. And so just thinking about your role inside the community, I like how that visual centers you as part of the community as well.

KW: This is actually a community artist's view of the beginning of the depression work. The Witness for Wellness, the bus going up the hill. You can get off the bus. The gas is the key core principles. And this is their language for research. Look, listen, record, share.

Witness for Wellness graphic of a bus with passengers on it going along a road that has the words share, look/listen, and record on it, road signs labeled support, build, and talk on them, and a gas pump with the guiding principles of trust, respect, participation, knowledge, and experience on it

DC: That's really great.

KW: This is from our New Orleans work where they really took this model for community outreach, community health worker outreach, which we then brought back. This is a community artist version of the design for CPIC, the randomized trial of supporting individual agencies where they're all working together.

Resources for services such as churches, mental health agencies, primary care clinics, substance abuse clinics, and community health services agencies, with community engagement and planning by 95 Los Angeles programs represented by bidirectional arrows between those services.

This is an example of a community. So the mural exercise.

And there’s another key community engagement exercise, which is the key. And what, what we do is we take a key that doesn't have ridges. We ask people to shout out, “what's on your keychain?” They say, “Oh my house, my car key.”

And 20 years later, someone comes back and says, “I still carry this around to remind myself of my responsibility to help those without keys.” And that's a good example.

DC: I really like those community artist renderings, that really gives you a nice perspective on it, that often we're so busy that we can't be that creative. I think that was really neat.

Thank you for taking the time and I'll be in touch.

Interviewer: Dakota Cintron

Date of Interview: 2/2/22

Method of Recording: Zoom

Transcription: Steph Chernitskiy using Adobe Premiere Pro version 22.2, edited for clarity and formatting.

Background: When Dakota Cintron sat down with Andrea Jones and Kenneth Wells, he proposed the following questions for discussion. 

Primary questions for interview

  1. What approach or approaches do you use to engage under-resourced communities? How do you determine who the relevant stakeholders are in these communities? Can you describe what successful engagement looks like?
  2. How did you apply this approach (or approaches) to the issue of depression/mental health? What approaches were the most effective? What did you learn along the way about reaching (and/or engaging?) community stakeholders?
  3. What did you find or are still finding in your work? In what ways have engaging stakeholders helped to develop evidence that can directly inform decisions for policymakers and community members?
  4. In your CPPR, are you communicating the findings back to the communities you engaged with? Closing the loop?
  5. How did this work affect your next steps or current goals (e.g., C-LIFE or courses you teach at UCLA)?

Additional questions (time permitting)

  1. Large community cluster randomized trials are rare and valuable. We wish they happened more often. For researchers and community members interested in doing a large community randomized trial, what would you say are the keys to success, in terms of galvanizing political will, getting funding, facilitating community buy-in, successful implementation, and effective dissemination?
  2. How does one teach community engagement methods effectively? What they keys to success in helping future researchers to grasp community engagement techniques? What are the biggest challenges associated with teaching community engagement methods?

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