By Hannah Mogul-Adlin, Senior Communications Manager

The COVID-19 pandemic and its disproportionate impact on people with complex health and social needs shaped the theme of our sixth annual — and second virtual — conference for the complex care field. The theme of Putting Care at the Center 2021 was Trust, trauma, and healing in our communities.

Complex care professionals from across the US and beyond logged in October 20-22 to hear our two keynote speakers — Daniel Dawes and Dr. Angel Love Miles — discuss how racism and ableism are created and maintained, and how they can be dismantled. Plenary sessions focused on creating and strengthening trust on all levels — between patients and providers, within complex care ecosystems, and between the public and its systems and institutions. 

In workshop sessions and our interactive Beehive, attendees heard about the broad range of innovative models, tools, and partnerships created by complex care programs and practitioners across the country to meet their participants’ needs, ensure equity in access to services and care, and promote healing and recovery in their communities.

Tracing the roots of trauma

Both of this year’s keynote speakers emphasized that our country’s norms and its health outcomes are not biological and are not coincidences — they are created. 

Daniel Dawes, Executive Director of the Satcher Health Leadership Institute at Morehouse School of Medicine and author of The Political Determinants of Health, outlined the laws, policies, and regulatory conditions that underlie what we call the social determinants of health. These political determinants, he said, are at the root of the health inequities we see so starkly and consistently across America. 

“To move beyond nibbling at the edges of these [racial health inequities],” he noted, “we first need to look back… and address the laws and policies that prop them up.”

Daniel took attendees through a history, starting in the 1600s, of laws and policies that served the commercial interests of the White ruling class by barring Black and Indigenous populations from being able to meet their own social needs. These early laws — which explicitly prevented Black and Indigenous individuals from growing their food, learning to read and write, and venturing beyond a certain radius — were recycled from one generation to the next, seeding both material deprivation and intergenerational trauma. 

“Only policy can fix what policy created in the first place,” said Daniel, but even that fix is an uphill battle. The success of any advocacy effort, he noted, has depended on how palatable it is to commercial interests and its investment value to the government. Nevertheless, he said, the pandemic has created “an opportunity, right now, to act.”

Trust comes from empowering the community

In her opening remarks, Camden Coalition CEO Kathleen Noonan noted that “trauma makes trust both harder and all the more imperative to build.”

“We didn’t need a pandemic to confirm that there is a lack of trust in many of our institutions,” said Denise Octavia Smith, Executive Director of the National Association of Community Health Workers, during the Trust in our systems: Centering equity in our recovery plenary. “This distrust is founded on real experiences across generations.”

Denise and her fellow panelists identified both community-based organizations and community health workers as leaders in building trust with their communities, but also exceptionally under-resourced and undervalued. Though there is a strong evidence base for the importance of social determinants of health, Denise noted that our funding, reimbursement, and care delivery models don’t reflect that evidence. “We have to move the dollars, activity, and capacity to social determinants of health,” she said.

Fellow panelist LaQuana Palmer, Director of NCCARE360 Foundation for Health Leadership and Innovation, builds trust by asking everyone, from patients to community providers to administrative assistants to organizational leaders, “Do you have what you need to thrive?” 

In the conference’s interactive virtual Beehive, two Camden Coalition COVID Community Ambassadors discussed their experiences sharing information about COVID testing and vaccination with members of their communities. “The Camden Coalition is a dual-directional program — they hear things from the community and they act on them,” said Community Ambassador Michael Jackson. “The best thing is when you know an organization has your back — that’s how you build trust.”

“The community has the solutions,” said Julia Liou, Incoming CEO of Asian Health Services in Oakland, CA, during the Trust across sectors: Centering trust in the complex care ecosystem plenary. “There’s no need [for organizations] to come forward with already-imagined ideas; just listen.”

Healing through compassionate care

In the plenary session entitled Trust between patient and providers: Demonstrating compassion in authentic healing relationships, National Consumer Scholar Rebecca Esparza recounted being treated “like cattle” and “like I was less than worthy” as a cancer patient accessing free care, and also shared examples of compassionate care that made her feel seen and cared for. Fellow presenter Dr. Anthony Mazzarelli, Co-President and CEO of Cooper University Health Care and author of Compassionomics (The Revolutionary Scientific Evidence that Caring Makes a Difference), shared the science behind compassion, noting that compassionate healthcare has measurable impacts on not only patients’ perception of pain, but at the cellular level as well.

The conference’s second keynote speaker, Dr. Angel Love Miles, scholar and activist for disability, racial, and gender justice, shared her experience growing up with a disability that put her outside of society’s ableist norms. Dr. Miles explained compulsory ableness as “the cultural presumption that, unless otherwise stated, everyone is expected to move and behave in ways that are in line with what are seen as ‘able bodies.’” Compulsory ableness means that most areas of public life, including healthcare, are inaccessible for people with disabilities. Ambulances that are wheelchair inaccessible lead to expensive wheelchairs being abandoned in the street, and exam tables that are inaccessible mean that people with disabilities often don’t receive the standard of care they are entitled to.

Dr. Miles shared that the love and acceptance she experienced from her family built the foundation for her to love and accept herself. “When people with disabilities seek medical care and related services, they need to find providers that see them as people,” she said. “I’m just one example of what can happen when we focus on the possibilities, not the problems.”

A plenary session highlighting the National Academy of Medicine’s report, The future of nursing 2020-2030: Charting a path to achieve health equity, featured nurses from the Camden Coalition and the Robert Wood Johnson Foundation talking about the unique ability of nurses and nurse-led care models to address social determinants of health and provide holistic, equitable care.

Jeneen Skinner, Senior Clinical Manager at the Camden Coalition, said that her favorite question to ask patients is “What brings you joy?” We use that question at the Camden Coalition, she said, to align people’s visions for themselves with their health.

Forward to justice, not back to normal

“Racism doesn’t sleep in America and hate doesn’t take a break,” keynote Daniel Dawes reminded attendees. For all the talk of going back to “normal” post-pandemic, “normalcy is not equity and justice.”

Speakers and presenters throughout the conference emphasized that norms have to be challenged and re-shaped intentionally and persistently, and that the complex care field is well-positioned to do so. 

“As complex care practitioners, it is our responsibility to interrupt the status quo.” Kathleen Noonan told conference-goers in her opening remarks. “We have the expertise and the trust of our partners to shape new policies and practices that meet our communities’ needs.”

In his closing remarks, Victor Murray, Senior Director of Community Engagement & Capacity Building at the Camden Coalition, agreed. “Normalcy is how we got here,” he said. “We have the opportunity to interrupt our current norms and create new ones that will benefit all of us. We are creating the future that our communities need and deserve.”

Save the date

After two years of virtual conferences, Putting Care at the Center will be an in-person gathering again in 2022. Join us and our co-host Adventist Health next year, September 21-23, 2022, in Sacramento, CA for our seventh annual conference for the complex care field.