This November, over 750 complex care leaders from across the
In the Blueprint for Complex Care — released at Putting Care at the Center 2018 — we discuss how effective complex care initiatives mature from individual programs to sustained collaboration between local health and social services systems. This year’s conference, co-hosted with Regional One Health, had the theme It takes an ecosystem: Complex care across the community. The importance of complex care ecosystems, communities whose organizations and sectors engage deeply with each other to better serve people with complex needs, resonated throughout the conference.
“Interdependence — from small community-based non-profits to large hospital networks,” said Camden Coalition CEO Kathleen Noonan in her welcome address. “Interdependence is, in fact, the strength of ecosystems. And in this complex care movement we’re advancing, it’s the key to our collective success.”
Borrowing from the field of child psychology, Kathleen encouraged the audience to move their communities’ ecosystems from “parallel play,” where “we’re looking at what others are doing and may even mimic a peer’s efforts, but we’re not cooperating,” to “cooperative play,” where “there is a palpable sense of group identity.”
“Healthcare runs the risk of ignoring generations of wisdom [from the social services and other non-medical sectors] on how to address these problems,” said Kedar Mate, Chief Innovation and Education Officer at the Institute for Healthcare Improvement during a fireside chat on the recently released report Integrating social care into the delivery of health care: Moving upstream to improve the nation’s health from the National Academies of Science, Engineering, and Medicine (NASEM).
His co-panelist, Robyn Golden, Director of Health and Aging at Rush University Medical Center, agreed. “People live in communities, not hospitals,” she said, “and they know what’s best for their communities.”
Building equitable partnerships
A number of this year’s breakout sessions focused on building partnerships between health systems and community-based organizations. In “Reimagining the relationship between healthcare and community,” Linda Dunbar, Vice President of Population Health at Johns Hopkins Healthcare, emphasized that building trust means pushing the leadership of hospitals and health systems to provide community-based organizations with real access and resources. For instance, “it’s not a real message of partnership if hospitals won’t let community-based organizations access electronic medical records,” she noted.
Susan Cooper, Chief Integration Officer and SVP of Ambulatory Services at Regional One Health, our conference co-host, presented in a breakout session on their One Health complex care model. When they looked more closely at patients who had been deemed “noncompliant,” she said, “what we saw buried in the chart was loneliness, homelessness, poverty, and undiagnosed behavioral health issues. We were bringing people to the hospital to solve problems that are not necessarily medical.”
In response to these problems, One Health strengthened their partnerships with local mental health, transportation, job placement, and legal service organizations, building a strong complex care ecosystem in Memphis that ensures their patients’ non-medical needs are solved in the community rather than in the hospital.
Telling authentic stories to inspire and motivate
Storytelling was another major theme of the conference, with a keynote address from renowned physician-author Abraham Verghese, a plenary on authentic storytelling moderated by professional storyteller Karen “Queen Nur” Abdul-Malik, and a Storyshare event where National Consumer Scholars and conference attendees shared their tales of transformation.
Conference keynote Abraham Verghese, Senior Associate Chair at Stanford University School of Medicine, told the story of being a young infectious disease doctor in rural Tennessee at the beginning of the HIV/AIDS epidemic, and the impact it had on his medical practice. “One of the most profound lessons I learned,” he said, “was that when I could not cure, I could still heal. I think there’s an analogy to what you do in complex care: there is a relationship formed that changes behavior. Complex care is about being attentive to the small things, which impacts the big things.”
In the “Power and accountability in authentic storytelling” plenary, four speakers talked about how the stories of people with lived experience can be used to “make real change, not to tokenize,” as Layidua Salazar, Storyteller at the National Network of Abortion Funds’ We Testify program, put it. “The part that feels tokenizing is when you’re looking for a story to tell a specific narrative — we don’t live single issue lives,” she continued.
At the Storyshare event during the conference’s Friday Beehive session, representatives of our National Consumer Scholar program, as well as conference attendees who had pitched their stories the day before, shared their own narratives. Many talked about how their experiences with broken systems had turned them into advocates.
Consumer Scholar Olivia Richard, National Board Member for the Center to Advance Consumer Partnership, was injured in an accident and placed in a poorly-run nursing home. She told the story of taking back control of her life by leading the dementia patients onto the patio in a bid to deliberately get kicked out of the nursing home. “I was not only in the fight for my life, but realized I could be a voice to fight for the freedom of my peers who are stuck in facilities and want out,” she said.
Coming together for change
Storytelling and ecosystems came together during the Robert Wood Johnson Foundation-sponsored plenary on creating and sustaining cross-sector complex care ecosystems. “We are aligning systems so they work together to serve the needs of people,” said RWJF Senior Program Officer Susan Mende, who moderated the panel. “Systems don’t exist by themselves — they’re made of people who have to bring their humanity to this work.”
“Systems don’t set goals; people do,” said Damon Francis, Chief Clinical Officer at Health Leads. “The major mechanism for alignment is the one-on-one meeting.” He added that the success of collaborative efforts depends on whose perspectives are framing the problem. “Your collaboration will go as far as the depth of your collective story,” he said.
The conference closed with a discussion on health and social care in today’s political environment. Speakers Susan Dreyfus, President and CEO of Alliance For Strong Families And Communities, and Frederick Isasi, Executive Director of Families USA, expressed optimism about the possibility for change, despite a chaotic and often frustrating political reality. “There is a core value of fairness in this country that truly does exist,” said Frederick. “There’s a currency there that’s very powerful.”
“I’ve never been more hopeful in my career, and I believe you — we — are who we have been waiting for,” said Susan Dreyfus.
Throughout the conference, the backdrop of Memphis and the city’s civil rights legacy was never far away. During the power and accountability in authentic storytelling plenary, Consumer Scholar Helina Fontes, Program Director at Northeast Independent Living Program, shared her experience visiting Memphis’ Civil Rights Museum. At the museum, which was constructed in the former hotel building where Martin Luther King, Jr. was assassinated in 1968, she learned that King had been in town to support the sanitation strike in Memphis.
“One of the things the civil rights movement did really well,” she said, “was bringing all these movements together to stand together with the power of numbers. What connects us all here is better health outcomes. I realized [King’s] work is still moving forward, it’s still living on, and I’m a part of it. And when I realized that, it was no longer ‘I’m here as someone with lived experience to talk to the providers.’ It’s an us. We are in this together.”
Join us in Philadelphia, PA for Putting Care at the Center 2020, October 28-30, 2020. Registration will open in early 2020.