As we work to coalesce the field of complex care, it is people with complex health and social needs who are best positioned to identify the changes we need: consumer leadership is therefore fundamental to the work of the National Center. In Camden, NJ, we are governed by a Community Advisory Committee and have effected statewide policy changes based on the barriers our patients have identified. At our annual conference, we invite Consumer Scholars to share their experiences and ideas for better care with attendees. And in organizations across the country, consumers are taking the lead in designing systems of care that actually work.

At The Center for Health Care Services (CHCS) in San Antonio, TX, which serves over 36,000 people with serious mental illness and substance use disorders per year, peer specialists and consumer boards have been instrumental in creating programs that engage their consumers, from  a peer-created drop-in center to  a consumer-driven partnership with local food banks to address food insecurity.

According to Dr. Ruth Morgan, Medical Director of Primary Care at CHCS, consumer input should be the top priority when designing programs for people with complex health and social needs.

“Whether or not we think of it this way, they are subject matter experts,” she said. “They’re the folks who have the lived experience. We can build it, but they’ll vote with their feet: either they’ll come or they won’t. But if we have people involved from the beginning, as we’re trying to build, their input will make it more likely to be successful.”

Fonda White has been involved with CHCS since 2016. He was drawn in by the interest that the staff there, including doctors, nurses, and even the receptionists, took in his life beyond his health. “They helped me not just with my mental aspect, but also with my personal development, just understanding myself more,” he said.

Fonda felt that he had benefited so much from CHCS’ care that he wanted to give back. Luckily, CHCS has the infrastructure in place to help him grow as a mentor and advocate. “[CHCS] helped me out so much and changed my life,” he said. “So anything I can do, I’m on board.” Fonda is currently working to become a  peer specialist.

Just over a thousand miles north, in Chicago, IL, Rodney Dawkins works as a Community Health Worker at Heartland Alliance, along with his duties as outgoing Chair of the National Health Care for the Homeless Council and as an Individual Team Leader with ONE Northside (“I love being involved! I can’t say no,” he laughed). Like Fonda, he got involved in peer and advocacy work as a way to give back.

“Even though I was at the lowest point in my life where I didn’t have housing, I didn’t have a good paying job, my health wasn’t good, it helped me stay grounded, have a positive thinking and attitude, and it just felt good,” he said.

Fonda and Rodney both applied to be Consumer Scholars of the National Center and attended our Putting Care at the Center 2017 conference in Los Angeles with a cohort of other consumers from across the country. They attended workshops, met with keynote speaker Dr. America Bracho, and had a special dinner with other scholars and accompanying staff members. They got to share their experiences and their ideas for making care more effective for people who face similar challenges.

Both said that getting the chance to network with consumers from other communities supported their own advocacy work, whether it was getting the push they needed to get out there and share their knowledge, or getting invaluable perspective from others trying to make a difference.

“I was really impressed by the other consumers. Just hearing their stories made me feel like I wasn’t alone,” said Fonda. “They were telling me how to make a difference. They were like, your story was great, and with the way you speak and the way you present yourself, you need to get out in the community and really help in a big way. Three unrelated people that told me that, and I was like, wow, maybe I do need to do something.”

“I really enjoy networking and talking with individuals from all over the United States of America because we’re all consumers,” said Rodney, “but some of the services or places that we live, there are different things going on. I like to talk to people and say, hey, what works for you all? Because this is not working for us down here. And then I can see how they were able to push for that, to get that funding for that, or to sign those petitions or go to the polls.”

Dr. Morgan accompanied Fonda to the conference and said that getting to talk to the Consumer Scholars and other accompanying staff members was a highlight of her trip. “Just listening to what they had gone through in navigating the systems and the difficulties spoke truth to what we see every day that are barriers to our [consumers],” she said. “To validate that, and also show what it’s like to come out on the other side and be successful and to be great advocates for themselves and others— that was very inspirational.”

Consumer Scholars form an ongoing cohort, and have the opportunity to attend and present at future conferences as Consumer Ambassadors, share their knowledge through webinars and Office Hours sessions, and sit on our Advisory Committee. “Essentially it helps us learn more about how things work, and how we can better ourselves and become stronger versions of ourselves,” said Fonda.

“75% of the work is done by the consumer,” said Rodney. “Consumers bring something special to the table: they can relate to what that [other] consumer is going through, whatever it is. I do it because it’s about helping others: the people who haven’t been born yet. The individuals who haven’t come through the doors of our agencies yet. Somebody paved the way for us, and so I just say, hey, I may as well pay it forward.”

Join us at Putting Care at the Center 2019 November 13-15 in Memphis, TN.

Do you have information to share about successful consumer engagement strategies in your community? Tell us about it by emailing [email protected]