A Conversation with Neal deJong, MD, MPH (University of North Carolina Division of General Pediatrics) and David Ming, MD (Duke University Departments of Medicine, Pediatrics, and Population Health Sciences)
It was supposed to be a one-time regional convening in North Carolina. But the pandemic hit, so the one-time convening became a three-part virtual meeting, attracting 60-90 people with a shared pain point: the systems of care for children with complex health needs.
The group included families, parents, state agencies, clinicians, researchers, and community agencies. Aligned by a common goal, the diverse group co-created a coalition named the Children’s Complex Care Coalition of North Carolina, or 4CNC.
CYSHCNet researchers, Neal deJong, MD, MPH (pediatrician) and David Ming, MD (hospitalist in adult medicine and pediatrics) recently spoke to us about lessons in humility about the role of academic research in helping patients and families.
DAVID: From a research standpoint, we were excited about the potential for these relationships. The foundations built out of those convenings have given us a platform to engage families and communities in participatory research that can be can be embedded into everything from secondary data analysis to qualitative inquiry to intervention development, etc.
NEAL: For example, David and I had a shared meeting this morning at nine o’clock. It was a research project meeting with three parents. These are people who participated in our convenings in 2020 and are still engaged in our work. One of them has been a leader on our advisory committee for several years. She’s our liaison to a much broader group through her parent network across the state. So they are helping us to co-create this research project. This particular meeting was about a qualitative research project. And just this morning, they were helping us revise our interview guide and go through dry runs of the questions. And, they’’ll be helping us again over the next few weeks before we launch the project to recruit participants.
NEAL: We recorded everything that happened in the convenings in the breakout rooms, and then used qualitative research methods to analyze those into relevant topics, themes, and recommendations. These topics, themes, and recommendations have now become what we look at as the marching orders for our subsequent body of work. This is what our community here in North Carolina tells us they need. Which is funny, as now we have 20 urgent things. But now we know, and we can pick them off one by one, as opportunities come up or we meet new people with shared interests.
NEAL: We’re trying to spread the gospel the about this work and get other people interested in and on the hook for doing some parts of this. Because, you know, speaking personally, I wouldn’t want “me” to be doing all this work. I’m not the best person to do a lot of these things. But I’m certainly happy to share what we’ve learned and help get people two or three or four steps farther down the road. What we can bring to the table is a set of partners who are invested in the work, who are happy to participate, who can co-create these things, along with some of the people who have the interest, the academic skills, and the motivation to do the work.
MAKING UP AS YOU GO ALONG
NEAL: Yes, we are still making it up as we go along. And I think one of the things we’ve been really lucky and fortunate to tap into is that there was there’s so much rich experience and passion and interest amongst our partners. Our partners from Title V were really interested in having clinical academic partners. Once we raised our hands and said, we’re interested in this and willing to work with you, we found people who were ready to get to work without having to beat the bushes and try to drum up interest.
TAPPING INTO TITLE V
DAVID: To build on what Neal said, functionally raising our hand was a really important and powerful part of our process. And North Carolina isn’t unique. Every state has a Title V agency; every state has a Family Voices affiliate; every state has clinicians who are taking care of patients and families who are navigating cumbersome systems of care. Everyone has some shared community with shared pain points and would love to find community around those shared challenges.
STEPPING OUTSIDE THE IVORY TOWER
DAVID: It was important for us to step outside of the ivory tower of academia. As a group, we needed to recognize upfront that these aren’t problems that only researchers can solve or only Title V can solve or only parents can solve. Looking back, at any point, any one of us in this group could have said, well, we have funding for this so why don’t you let us take over. But we didn’t. If we can attack the same central pain point, with a slightly different group of people and maybe think about it differently, we have everything to gain and very little to lose. This collective spirit and philosophy was really to our advantage.
SHARED COMMUNITY; SHARED PAIN POINTS
NEAL: It helped from the beginning for us to frame this as an exercise that didn’t have an explicitly academic goal. We talked about developing a priority agenda for participants and professionals across this system of care to use as a ‘rallying’ point. And we purposefully put that together in a format that was immediately available and user friendly and shareable.
Then we invited everyone who participated in the convening to read the document and encouraged them to use it for whatever purposes they needed within their organizations. As an example, our Title V partners used parts of the white paper to develop their reauthorization paperwork. So it’s out there for our partners in the public domain to be used. Unlike a research paper, which has a lot of restrictions on who can access it, as well as who can understand it.
SURPRISES AND LESSONS IN HUMILITY
DAVID: I’ve been very pleased and humbled by just how well we as individuals and as partners have embraced this work even when we’re coming at the issue from very different perspectives. We’ve been able to find some common ground. And that doesn’t mean that everyone shares the exact same opinions or wants to do the same things or even that we have the same priorities. But there is absolutely common ground. It’s a credit to our partners, for embracing us and embracing the idea of finding shared purpose.
Another thing is how doing this kind of collaborative work is starting to bear fruits that will position us for academic work as well. We’re finding ways to interweave our partners. Which is different from academic products I’ve worked on in the past, where “we need to engage families and communities” is something we only ask when we’re 90% there. But we’re trying to do projects that are responsive to what people told us in the convenings. And it feels really good to then engage with them because we already have shared common ground and a pre-existing relationship. So when opportunities for funding or projects come up, we have people we can go to.
NEAL: It’s been humbling for me to realize that the time horizon that’s required for a research project with a goal of collaboration is pretty impractical. It’s not a high priority of much interest to a lot of family and community partners. We talk a lot about wanting to partner with and engage people with lived experience in research. And then we say, alright, we’re going to prepare this grant proposal, which will be submitted in a year. And then explaining that we’ll hear back from the proposal in nine or 10 months. Then if it gets funded, it’ll take four to five more years to do the work. I think what we’ve found in our collaborations with people and developing and sustaining these relationships over time, is that if that’s all we’re offering, people look at us sideways. And they’re like, why the heck do I want to get involved in something that I experienced day to day? So a question we ask ourselves is how do you pair academic research with work on policy and/or advocacy? Or, partnership around issues of shared interest in the near term and work on those things in parallel? Research alone is not that interesting or compelling to people who have lived experience. And, there are a lot of people working on the same things, so how might we work together?
MOVING MEDICINE OUT OF SILOS
DAVID: It’s probably my Med/Peds bias, but the stuff we’re doing in the pediatric complex care world applies across care settings. This work applies to the care of adults with multiple chronic conditions; it applies to the care of elderly patients; it applies to the care of patients at end of life. It’s the same principles. We’re doing and caring about the same stuff. It’s just we’ve been in silos that have been constructed around age ranges and life stages. But if we were to imagine, just focusing on the substance of the thing—wow, I think we have a lot more in common than we have different. There’s a lot of untapped potential in collaboration outside of these silos. 50 more peer-reviewed publications is not the answer.
“50 more peer-reviewed publications is not the answer.” – Dr. David Ming
PEARLS FOR RESEARCHERS
NEAL: There are probably opportunities for researchers to invest more heavily within their own state. And that it will take a lot of those investments to move the needle forward. Every state has Medicaid, Title V, block grants, etc, and I would hope that people double down on investments in their own states. Every time I meet someone from North Carolina that’s aligned with this kind of work, I think, why didn’t we know each other before? It’s happened so many times and it’s still happening. So keep getting out there. It’s what makes this work, work.
DAVID: Be mindful that much of the work we do is at the local level. It’s critical to build these foundations. It’s meaningful work and it has meaning for your local partners. Cultivate those relationships. A powerful way the CYSHCNet national network works is by promoting best practices for positioning academicians and community partners, outlining core principles that could be followed and tailored to the researcher’s local environment.