Eve Burdett was unhoused and living in an encampment when a member of the Camden Coalition’s Community Advisory Committee (CAC) noticed she had a gift for connecting to others and a passion for improving people’s lives, even when she was struggling herself. It was still early in the pandemic and the city was moving hastily to clear the encampment where she lived. Eve stood up for the people living there, securing an extension that allowed people to save their belongings before moving to hotels.

Since the CAC was created in 2014, the Camden Coalition has sought out people like Eve — who can bridge the divide between Camden residents with complex medical and social needs and professionals in the health and social service sectors — to serve as CAC members. Early on, they gathered feedback on the state’s Medicaid accountable care demonstration, a then-novel approach of incentivizing hospitals, doctors, and social service providers to coordinate the care Medicaid beneficiaries receive.

As one of three accountable care organizations certified by the state, the Camden Coalition used the feedback to refine its programs. It proved so useful that in 2018, as the demonstration was coming to an end, the Camden Coalition decided to not just retain the CAC, but elevate its importance to give community members, including participants in the Coalition’s care management programs, a direct path to influence the organization’s programs and overall strategy.

The benefit of this approach is that it enables CAC members to educate the broader community about health-related issues and shape the organization’s response to them. To strengthen their voice, the Camden Coalition increased the number of CAC members on its Board of Trustees to four in 2018, the same year the CAC became a formal committee of the Board. At meetings, they share the insights they’ve gleaned on emerging and unmet health needs and articulate the ways providers, government, and social service agencies in the region may fall short in meeting them.

“That’s the beauty of the CAC. The members tell us, ‘This is what you may perceive you are doing, but this is the reality of what we experience,’” says Marilyn Mock, a member of the Camden Coalition’s Board of Trustees, and the Policy Director for Senior and Wellness Services at Fair Share Housing Development, which provides affordable housing to low-income senior citizens and people with disabilities in Camden. “They’ve driven home the message that health care doesn’t stop in the hospital and that what happens in the community can hinder what the health care system can do,” she says.

Integrating the CAC into the Camden Coalition’s operations

To prepare the CAC members for their role and cultivate their talent, the Camden Coalition provides them with access to staff, who can explain the intricacies of the organization’s programs and other public health interventions, and for those who want it, training in public speaking, advocacy, and relationship building. Last year, Camden Coalition staff also introduced CAC members to the tools its care managers use to engage clients, including motivational interviewing and de-escalation techniques, as well as strategies for promoting resiliency and self-care.

The program has produced a cadre of people who are well-equipped to make suggestions for improving the effectiveness of the Camden Coalition’s programs and health care services more broadly. Among them is Mrs. Carol W. Jones, a Camden resident who is a retired teacher and administrator in the Camden City School District, who has decades of experience with faith-based organizations and community groups that serve as a safety net for low-income people. Other members, like Eve and Jamal Brown, have been clients of the Coalition’s care management programs and have firsthand knowledge of both the Camden Coalition’s work, as well as that of many of the other providers, organizations, and services in South Jersey’s ecosystem of care.

Nearly all CAC members participate in the Coalition’s Community Ambassadors program, which was launched in 2020 to prepare community members to discuss public health programs with their neighbors. The Ambassadors share information and report back to the Coalition and its Board of Trustees, as well as state and county agencies and partner organizations, on what’s working and not.

Both the CAC and the Community Ambassadors program were pivotal in keeping Camden area residents abreast of rapidly evolving information about COVID-19, including how to find testing centers and vaccination sites, and how to protect vulnerable residents from getting sick.

Since the unwinding of continuous Medicaid enrollment in 2023, the CAC and the Ambassadors have also helped to educate Medicaid beneficiaries about how to ensure they don’t lose their health insurance. Through canvassing, they discovered some residents were having trouble getting responses from the organizations tasked with helping them retain coverage.

Marilyn says the CAC also informed the Camden Coalition and its partners of the lack of Spanish-speaking staff in provider organizations, a significant problem in a city where more than half the population is Hispanic or Latino. Many Medicaid recipients have also reported being talked down to or discouraged from asking questions by providers who seem to be making assumptions that because they are poor, they are unable to engage in shared decision-making. “The feedback we get is they treat me differently because I’m on Medicaid or because of my color, or the language barrier,” Marilyn says.

By elevating the role of CAC members, integrating them into the organization’s governance, and encouraging them to speak at conferences and before policymakers, Marilyn says the Coalition is demonstrating that they are an indispensable part of ensuring the healthcare system runs efficiently and effectively for everyone. “They challenge us to consider how we can, as providers, work toward improving the way people of color experience health care,” she says.

Promoting a sense of belonging

As part of a larger organizational push to ensure that people with lived experience are compensated for their time and input, the Camden Coalition offers stipends to people who serve as Community Ambassadors and on the Coalition’s Board of Trustees. While not everyone wants to be paid, many appreciate having their contributions acknowledged. They also value the opportunity to learn about new care models and innovations, and meet people like themselves across the U.S. through programs like the National Consumer Scholars Program.

For CAC members who want to share their personal experiences with policymakers and providers, the Coalition offers coaching so they feel at ease whether delivering the message in writing or in person. It can be intimidating at first to speak before large groups and members sometimes question the value of their insights when they have fewer years of education than the people they are addressing.

Maritza Gomez, the Coalition’s program coordinator for community engagement, pushes back against this idea because she sees day in and day out, how impactful they are. “I always emphasize to new members, ‘Whatever your experiences have been, that’s what we need. Your expertise and all your intelligence bring a new light to our community,” Gomez says.

Eve is a good example. She wasn’t sure she was informed or engaged enough with the community to be helpful. She had been grappling with chronic conditions that had been either misdiagnosed or poorly managed when she met the Camden Coalition’s care management team. They earned her trust by helping her gain access to better medical care and other supports, including transportation to appointments and help filling out paperwork that would eventually enable her to move off the street and into an apartment.

After she attended Community Ambassador training sessions on how to build authentic healing relationships, she began approaching people who were living on the street to let them know supports were available. She contacted at least one person each day and quickly found she had a knack for persuading even the most hardened individuals that another way of life was within reach.

She attributes part of her success to the training, which taught her how to forge connections with people who are unconvinced that anyone, including Camden Coalition staff, can help them. “I learned I had to come at them with open-ended questions,” she says.

Her own transformation also caught their attention. “They would look at me like, ‘Eve, wait a minute. You were just homeless. What’s is going on?’ I’d tell them, ‘What’s going on is I found the right people to talk to and I’m going to introduce you to the same person.’”

The more Eve participated in the CAC and worked as a Community Ambassador, educating people about Camden Coalition’s programs, the more she saw her own life improve and her confidence increase. She began offering up ideas for getting community residents to attend health screenings, including organizing one around a petting zoo as a way of attracting multiple generations to the same event.

An area employer, watching her in action at one gathering, offered her a full-time job operating heavy machinery, which she accepted. She was also elected to serve as Vice Chair of the CAC and as a Trustee on the Coalition’s Board.

Jamal, who joined the CAC in 2016, was introduced to the Camden Coalition shortly after suffering a stroke in his early 30s. He was living in a shelter at the time and had suffered a series of traumas, including the loss of his mother just after he turned 16 and more recently his brother, who died of an overdose. Jamal had become a father at 21 but spent much of his 20s in prison. When he emerged, he turned to substance use and was skeptical that the Camden Coalition could help him.

When its staff approached him in the hospital, he figured he had little to lose by indulging them and is now glad he did. The team helped him get of a copy of his birth certificate and an ID and then secure housing and an emotional support dog. Now enrolled in bible college, he tries to serve as a beacon of hope to others.

Jamal never turns down an opportunity to explain to Camden residents how social service programs work and the importance of having health insurance, particularly for people who have mental illnesses. He talks about the programs the Camden Coalition operates everywhere he goes — at bus stops, in supermarkets, and walking down the street.

He’s also used the relationship building skills he’s learned to have conversations with police officers, which surprises his family and friends given his past experiences with the legal system. He sees police officers as allies not adversaries. “A lot of people are trying to solve the same problems, and it’s good to bounce ideas off one another,” he says.

Participating in the CAC led Carol to suggest her church implement the Faith in Prevention program, an 8-week program focused on improving the physical and mental health of congregants. As part of the program, nurses from Rutgers University conducted health screenings, which revealed one person had such high blood pressure, she needed immediate care.

“It was a very comprehensive program,” Carol says, one that led the church to provide healthier meals to parishioners and recipients of their outreach meal program, The People’s Table, and make fresh water more widely accessible to members and visitors to the church.

Lessons on engaging communities in delivery system reforms

Engaging CAC members in critiquing the organization and its partners is a balancing act, and a delicate one when members have been past or present clients. The Camden Coalition strives to solicit constructive feedback while reassuring members that negative comments won’t compromise their relationships with programs or staff.

This is accomplished by being transparent about the organization’s decision-making process. Staff who work with CAC members clarify how the CAC’s input is factored into business decisions and demonstrate there are systems in places for identifying potential conflicts of interest.

The organization also strives to flatten any sense of hierarchy, which might make people feel they must jockey for position or power. As members of Camden Coalition’s National Consumer Scholars program and Camden Coalition staff noted in a Health Affairs piece in January, “community engagement often goes poorly when there are unfair power dynamics and consumer advisors are undervalued. These misalignments are unavoidable, but they are also opportunities to build trust or undermine it.”

To further foster a sense of belonging, Camden Coalition staff invest time in preparing CAC members for board meetings — going over the content and answering questions about matters on the agenda so they feel equipped to participate fully in discussions.

Victor Murray, the Coalition’s Senior Director of Community Engagement and Capacity Building, says CAC members have been indispensable in refining programs and messaging. “They challenge me to be more precise in articulating the goals and the purpose. I find if I can’t communicate that in a way that makes sense to that group, I need to go back to the drawing board,” he says.

In keeping with the guidance the authors of the Health Affairs piece offer to health plans on establishing consumer advisory boards, the Camden Coalition also provides updates to members so they know if their feedback has been acted upon or not. “It’s meaningless if you ask people what they think and everything stays the same,” Marilyn says.