Transforming pediatric care to be more holistic, family-centered, and equitable takes a concerted effort, including among providers, caregivers, health systems, payers, policymakers, and other interested stakeholders. But youth voices — often overlooked — also need to be central to these efforts. As the ones experiencing the care first-hand, young patients’ perspectives can inform transformation efforts in critical and nuanced ways that others can miss.

To learn how to engage youth voices more effectively, the Center for Health Care Strategies (CHCS) recently spoke with Sneha Dave, founder and executive director at Generation Patient, a global organization that supports youth with chronic and rare conditions in advocating for their needs while navigating health care systems. Sneha shared her perspectives for empowering youth voices to support child health care transformation. While her work is centered on youth with chronic conditions, the lessons shared below can be applied to other groups. Sneha contributes her insights as part of Accelerating Child Health Transformation, a national initiative led by CHCS with support from the Robert Wood Johnson Foundation.

Q. What should equitable partnerships between pediatric practices and youth look like?

A. Equitable partnerships should be beneficial to both parties, so there should be an aspect of give and take for both sides. There should be opportunities for young people to learn and gain leadership skills to assist in their overall development. It’s important to directly ask if there is anything else that we can do to support a youth’s individual journey.

Youth patients also need to be compensated for their time. There’s been a recent push for more adult patient compensation for participation as advisors, but it’s yet to really trickle down to youth patients. It’s particularly important because we want to set the tone for the value of lived experience early on.

It is also important to allow patients to share their stories, but more than that, to let them drive the change. Listening to patients is only valuable when patients see the changes.

Q. What are some strategies you use at Generation Patient to facilitate discussions between young adult patients and providers?

A. At Generation Patient, we conduct several roundtables. One Roundtable is disease-specific, focused on young adults with inflammatory bowel diseases (IBD). We bring together patients, providers, social workers, nurse transition coordinators, among others, for these monthly discussions and publish proceedings after each of these sessions. At these sessions, a patient and a provider will speak for the first 20 or 30 minutes. The provider presents first on the evidence-based aspect of the chosen topic, and then the patient will present based on their lived experience. The rest of the 60 to 90 minutes is a discussion based on a set of pre-defined questions. We include whoever is interested in drafting the proceedings to allow for authorship on a peer-reviewed publication. I think that part is cool because it’s a professional development opportunity that people get, which is really important for young people. I am proud that we have partnered with the peer-reviewed journal Health Care Transitions to publish these proceedings. This is due to health care professionals, such as editor-in-chief Dr. Cecily Betz, who advocate for patients to be leading research.

Q. How do you support equitable partnerships between youth and medical care teams through your work?

A. We try to ensure that everybody feels like they’re equally a part of the conversation, especially when it’s not just a youth-specific space. Ahead of each round table, we send pre-reading — often research articles that are intentionally new to everyone attending the round table — and we provide opportunities for people to ask questions or meet one-on-one before the sessions. Then, during the actual meetings on Zoom, we try to make sure that everyone’s voice is heard. If somebody hasn’t spoken, especially a patient, we message them privately to ask if they have anything to add. Small things like that go a long way because there are inherent power dynamics whenever you have a doctor and a patient conversing. It’s important to nudge people to speak up because a lot of young people might not feel like their experience matters when, in reality, it’s the young people whom we want to hear from.

There’s a lot of power in enabling young people to share their stories because often what we get is adults telling young people’s stories rather than hearing them directly from the child or young adult. It’s so much more powerful to hear from kids and adolescents than it is to hear from an adult just sharing the story for them. Also, it is empowering for young people to have the opportunity to share stories for themselves.

While I believe empowering patient narratives is crucial, I believe the health care space should enable patients to actually drive the change, whether that is creating better health policies or designing research.

Q. What do you think is the most important thing for pediatricians to know about the work that you do with adolescents and young adults?

A. I think pediatric practices can be more intentional about the fact that there is a difference between transitioning and transferring care. In addition, it is important to have one-on-one conversations with young patients, even as young as 12- to 13-year-olds, to promote agency in their own health care.

I also think that pediatric practitioners can do a better job of recognizing the value of peer support within this age group and helping to refer patients to peer support spaces. Right now, we’re seeing a lot of mental health awareness, which is so important, but we’re not seeing appropriate solutions that address the unique challenges of young adults with chronic conditions. Unfortunately, traditional mental health services don’t work for everyone. These services are not always culturally responsive, affordable, or accessible. I think interacting with peers and having a community can be a part of the solution, especially for young people with chronic conditions who have an additional isolation layer. Right now, at Generation Patient, we are investigating peer support as an intervention through the support of the Patient-Centered Outcomes Research Institute.

Q. What does treating a pediatric patient with dignity look like on the ground?

A. One of Generation Patient’s Medical Advisory Board members, Dr. Sandra Kim, from the Cleveland Clinic, does this so well. She uses things like GPA or involvement in sports and recreational activities as surrogates for how kids are doing emotionally as well as physically. You know, for conditions like inflammatory bowel, you can see the inflammation and other biomarkers of a child’s condition. Still, you can’t always understand the emotional and social well-being of the child from physical symptoms. So, in her role as a pediatrician, she is not only trying to get the inflammation or whatever physical condition under control, but she’s also trying to understand her patient’s social life. I think framing questions in the way she does is powerful because it’s a clear way of understanding well-being outside the traditional medical setting. Her method then opens up other conversations about what’s happening in her patients’ lives beyond just the medical aspects.

Q. What suggestions for policymakers do you have related to encouraging kids/young adults to become more involved in their care?

A. There are a lot of fixes that don’t require extremely expensive overhauls, like understanding and promoting the role of transition coordinators. In most cases, pediatricians do not have the time to thoroughly walk through the transition to adult care and transfer processes. This is why a nurse transition coordinator can be beneficial. It enables someone else in the medical system to fully prioritize the self-management aspect of care.

The University of Pittsburgh Medical Center is an example of a health system that has a transition coordinator, and he is incredible and attentive to his patients. He communicates via methods that work best for his patients. Having a coordinator can really improve patient self-management and patient autonomy. 

Additionally, I’d welcome more studies on the cost-effectiveness of peer support programs. There’s a potential that insurance plans could cover these programs if the evidence shows just how valuable peer support can be in not only promoting disease management but also potentially supporting some other incredible outcomes that we just don’t know about yet.

Q. Where do you find joy in your work?

A. I love the people I work with. My work is fun because I get to see other people on their advocacy and leadership journeys. One particularly powerful example is one of our fellowship members in India, Nikhil Jayswal. He was able to create the first patient advocacy group for people with inflammatory bowel diseases in India. During the year-long training program, we tried to generate creativity within our fellows, who were young adult patients. And I think that was a real joy-creating moment for us because we witnessed his advocacy flourish and got to see him grow independently.

Large patient advocacy groups are dominated by pharmaceutical sponsorships, which can often silence groups from speaking out on issues that affect us, such as prescription drug pricing. It is hard sometimes as an independent patient group to be in policy spaces because we’re relatively young, and we aren’t accepting millions of dollars from private industry. It is great to find community with other grassroots organizations. It’s so important that we find joy from the commitment to our mission in making sure that more of our community members are integrated within this space. I feel a sense of gratitude knowing that this movement can long outlast me.