National Consumer scholars Quiana Wilson, Alayna Tillman, Charlie Vazquez, Jamal Brown, and Stephanie Burdick at the Putting Care at the Center 2018 conference in Chicago (L to R)

A transformed healthcare system that ensures whole-person care for every individual is only possible when we recognize individuals with lived experience as key complex care partners. At the Camden Coalition, we have built a robust community engagement strategy in Camden to do just that, and more recently expanded this work to a national platform through our National Center for Complex Health and Social Needs.

Locally, our membership organization’s Board of Directors is a reflection of the diverse set of stakeholders needed to build and strengthen the complex care field — we bring hospitals, primary care providers, social service agencies, and community groups together regularly to discuss and advise on the goals of our collective efforts. The community agencies serving on the Board take the role of community voices in our coalition very seriously, and in 2014, established the Community Advisory Committee. Composed of residents and consumers, the Community Advisory Committee is a committee of the Board advising the Camden Coalition on community health needs and making recommendations on the strategic direction of the organization. The chair and co-chair of the Community Advisory Committee also serve as trustees on our Board of Directors.

With the launch of our National Center for Complex Health and Social Needs in 2016, we created our National Consumer Scholar program to amplify the voices of consumers at the national level. We initiated the program by inviting a cohort of individuals with lived experience from across the country to attend our national conference and share their expertise with other consumers, providers, and experts.

Together, the Community Advisory Committee and the National Consumer Scholars have formed the foundation for our community engagement work. This work holds us accountable for reaching our goal of centering individuals with lived experience in all of our activities and conversations about redesigning our systems of care and addressing systemic issues that impact their wellbeing. Over the past year, we have expanded on our community engagement efforts in four key areas:

1. Fostering a peer community. As we reflected on the Community Advisory Committee (CAC) membership and how it might intersect with our engaged alumni network, we made a concerted effort to engage graduates of our Camden Core Model care management intervention in our CAC monthly meetings. Committee meeting attendance quickly grew — former patients and their loved ones now comprise half of the attendees, and the other half are Camden residents. It has become a forum where consumers can meet others who share similar experiences in their health journeys, and exchange personal stories in a space where people truly listen. In addition to forming peer bonds, many graduates see the Community Advisory Committee as an opportunity to give back and have joined as formal committee members, advising on consumer health needs, such as food access and supportive housing, and collectively generating impactful solutions from the patient perspective.

National Consumer Scholars are also building a network of their own. The Scholars meet regularly as a group via teleconference to discuss issues they are facing in their journey to better health. As a result of these gatherings, one Consumer Scholar from Utah began to regularly call another who is a legislative ambassador in California for advice about state policy campaigns she was working to advance in her own community. On another conference call, a consumer advocate in Boston asked meaningful questions and inspired a discouraged Consumer Scholar and Community Advisory Committee member who was experiencing isolation. They were forming new peer support networks within our larger network that we didn’t realize initially that they needed.

2. Engaging directly impacted individuals in advocacy efforts with partner agencies. In our work to transform the systems that impact our patients’ complex health and social needs, we have prioritized engaging our program graduates in our advocacy efforts with partner agencies. Last September, the Let’s Drive NJ Campaign began holding rallies at the New Jersey State House calling for expanded access to state IDs and driver’s licenses. Though there may not seem to be an obvious connection to people with complex needs, we surveyed our program graduate pool to see how many of them struggled to obtain an ID after living on the streets, experiencing addiction, or recently returning from incarceration. Most had, so we then joined the campaign and traveled with dozens of Camden immigrants to Trenton, where many of our program graduates experienced a public rally for the first time. Inspired, they asked for more opportunities to advocate for change. Since the rally, some have shared their stories on a public stage — Jamal Brown wrote an op-ed supporting a bill to expand access to state IDs to more residents, and Miguel Rodriguez shared his story with congressional representatives in Washington, DC to urge support for affordable and supportive housing and healthcare.

We also focused our advocacy efforts on another important issue: services for youth within the criminal justice system. Many of our Community Advisory Committee members experienced childhood trauma and know firsthand its effects on the health and wellbeing of many individuals within the criminal justice system. Through conversations with our community partners, our Community Advisory Committee leadership learned about the 150 Years is Enough campaign opposing youth prisons in New Jersey and recognized an opportunity to use their stories to advocate for better services for Camden youth. Last November, the Community Advisory Committee joined a local partner Hopeworks and the New Jersey Institute for Social Justice in hosting a Take Back Our Health event to build support for elected officials to redirect funds from youth incarceration to preventative, trauma-informed programs for Camden youth.

3. Creating space for consumers to use storytelling to advocate and heal. In late 2018, South Jersey Cultural Alliance approached us with an invitation to partner on a storytelling performance with a focus on healthcare stories. This was exactly what our graduates had been asking for: an opportunity to tell their stories to not only shed light on the obstacles Camden residents face when accessing the healthcare system, but to also facilitate their own healing from these negative experiences. For several weeks, a cohort of current Community Advisory Committee members and program graduates worked with storytelling experts Queen Nur and Peter Murphy to craft their personal stories for the stage. Their enthusiasm to publicly share their struggles and triumphs in wellness spurred us to seek out several other venues for such performances.

In March, New Jersey First Lady Tammy Murphy hosted a Camden Family Festival to raise awareness about maternal health. It was the perfect place for Angel Johnson, a graduate of our Camden Delivers program and Community Advisory Committee member, to tell her story of fighting through addiction, domestic violence, and multiple systems to reunite with her son. In June, we held Take Back Our Health: Stories of Healing at Camden’s Waterfront South Theatre as the culmination of our storytelling partnership with the South Jersey Cultural Alliance. Featuring performances from five Community Advisory Committee members, the event moved the audience to tears and laughter, and inspired others to embrace their stories as part of their own healing process. The enthusiastic audience reception further energized the storytellers and inspired the Camden Coalition to partner with Queen Nur to integrate storytelling into our national conference, Putting Care at the Center 2019. This year’s Consumer Scholars cohort will introduce themselves to one another through storytelling before taking the stage to share their stories with conference attendees.

4. Supporting consumers as collaborators. Locally, our Community Advisory Committee has begun collaborating with the clinical and social service providers who participate in our organization’s regular Care Management Meeting and Accountable Care Organization to have an even greater impact on improving complex care delivery in Camden. Until recently, these local stakeholder groups have not formally convened at the same table to work through a common issue, but this year, the groups came together for the first convening of the Complex Care Collaborators group to narrow down on a focus area that they can jointly address. Ultimately, they decided that they could most effectively address the issue of food insecurity and access together — specifically, the issue of “knowing the right resource” when helping people experiencing food insecurity. This month, they will reconvene to review what they’ve learned about existing practices and co-design a solution that will mutually benefit all parties. By bringing together consumers, hospital administrators, and frontline providers at the same table, we hope to build trust between community members and providers that allow for honest conversations, and provide a space for consumers to impact change throughout the region.

Nationally, Consumer Scholars have gone from being attendees at our national conference, to leading workshops and imparting skills-based knowledge to conference attendees. They have also been presenters as part of our Virtual Learning series, hosting webinars and Office Hours sessions and sharing their housing access expertise. Through a Consumer Empowerment grant from the Robert Wood Johnson Foundation, we are expanding our National Consumer Scholars program even more to support the participation of consumers as equally qualified experts in the development of the complex care field. Our 2019-2020 program will kick off at Putting Care at the Center 2019 and each Consumer Scholar will participate in a project over that time to advance the field and hone their leadership skills. By the fifth annual conference in 2020, they will take on roles as workshop presenters and share how they connected the national work with their local communities. While several Consumer Scholars helped lead workshops with their local organizations at our past national conferences, the new cohort will lead a workshop highlighting their work through the National Consumer Scholars program.

While we are proud of the progress we have made to place consumers at the heart of our innovations, we recognize there is still much room to grow. As the Blueprint for Complex Care acknowledges:

Individuals’ personal experiences and insights into the systemic issues impacting people with complex needs, as well as potential solutions, are powerful assets that are not adequately represented in the [complex care] field. The field must prioritize and support their involvement in continued field development.

We are committed to supporting more people with lived experience in taking a seat at the transformation table.