MINNEAPOLIS – June 21, 2023 – The Camden Coalition, the Center to Advance Consumer Partnership, PFCCpartners, the Institute for Patient-and Family-Centered Care, Community Catalyst and a team of experts with lived experience, including Burt Pusch, LaRae Cantely, Rebecca Esparza, and Stephanie Burdick are taking a big step toward designing a national strategy that will develop and recommend practical and sustainable ways for healthcare organizations to build meaningful partnerships with community members and people with lived experience.

The INSPIRE project (Initiating National Strategies for Partnership, Inclusion & Real Engagement) brings together five organizations that are deeply committed to advancing partnerships with people with lived experience, as well as a team of seasoned advocates with lived experience, to identify and codify the best practices for healthcare organizations to build partnerships with community members and co-create tools and strategies that advance effective partnerships.

“Building impactful, equitable, and mutually beneficial partnerships with community members, consumers, family caregivers, and people with lived experience is an ethical imperative for healthcare. And, while there has been growing interest among healthcare organizations to engage community members and people with lived experience, many lack clear best practices for building and sustaining these partnerships,” said Victor Murray, Senior Director of Community Engagement & Capacity Building at the Camden Coalition. “Our directive is clear—develop a national strategy for authentic community engagement in healthcare, and create tools, resources, and learning and coaching models that will meet the varied needs of healthcare stakeholders and community members/people with lived experience to advance meaningful partnerships in their communities.”

“Within the U.S. health system, people with the most at stake often have no say in the processes, programs, or policies that impact their lives. This is especially true for people who are frequently left out of or harmed by health policy and practice decisions, often due to racism, classism and other forms of oppression. As a result, millions of people are left without adequate coverage and care — exacerbating structural disadvantage, social deprivation, and poor population health outcomes,” said Dr. Brandon G. Wilson, Senior Director of the Center for Community Engagement in Health Innovation at Community Catalyst. “Only by putting people with lived experience at the center of designing and implementing care models will the health system begin to better serve those who need it most. We are thrilled to work with these fantastic organizations to create meaningful and sustainable methods for community engagement that will serve as a model for health care organizations across the country.”

The timing of the project is critical considering several important advancements in the national community engagement landscape. In 2022, the National Academy of Medicine (NAM) released “Assessing meaningful community engagement: A conceptual model to advance health equity through transformed systems for health,” the first product to come from their extensive work with a national expert Organizing Committee. In addition, the Center for Medicare and Medicaid Service’s announced a new requirement for health insurance companies that offers Dual Eligible Special Needs Plans (plans that serve people eligible for both Medicare and Medicaid) to establish and maintain an enrollee advisory committee.

“Given the significance of these new resources and requirements, there is a window of opportunity to support the healthcare field by identifying and codifying the best practices for building partnerships with community members,” said Melinda Karp, Executive Director of the Center to Advance Consumer Partnership, and Chief Experience Officer for Commonwealth Care Alliance®. “This is also an opportunity for building out tools and resources for organizations and people with lived experience to translate these practices into action — together.”

A key vehicle for gathering input from stakeholders will be listening and engagement sessions, the first of which was held in May at the American Hospital Association’s (AHA) Accelerating Health Equity Conference.

“This was the perfect venue for us to publicly kick-off this project. We were able to engage with health and hospital system stakeholders to share and validate the goals of the project,” said Evelyne Kane, Senior Program Manager of Community Engagement & Capacity Building, Camden Coalition. “This also provided for an opportunity to gather perspectives from attendees on their experiences, priorities, goals, bright-spots, and barriers to wider adoption of robust community engagement in their work.”

The project will be broken down into two phases with the first phase involving a 12-month strategic planning and research period during which the core project team will collectively:

• Assess the current state of community engagement work nationwide;
• Identify best practices through a series of focus groups and interviews with key stakeholders including people with lived experience who are engaged in work as advisors/advocates;
• Articulate a value proposition for people with lived experience to become engaged in this work; and
• Create a business case/financial framework for partnerships between healthcare and community members/people with lived experience, including identification of reimbursement pathways to support the financing and sustainability of such work for organizations.

“This tipping point we are experiencing has moved conversations in health systems beyond “why” and into “how,” said Stephen Hoy, Chief Operating Officer, PFCC Partners. “We can now collectively make transformative strides toward widespread patient, family caregiver, and community partnerships in healthcare. To make this dream a reality, this project will both expand the health system capacity and resource for impactful collaboration. It will also instill in these systems engagement as a foundation – opening space for innovative partnerships that advance progress toward the goal of health equity.”

In phase two of the project, the focus will be on translating phase one findings and outputs into practical tools and opportunities to drive widespread adoption of effective community engagement strategies across healthcare. These may include toolkits, implementation tools, case studies, learning communities, and targeted technical assistance offerings and training products. The content of these will be determined by the phase one findings.

“This work creates an important opportunity to advance partnerships in healthcare that are deeply informed by understanding the goals, priorities, and experiences of individuals with lived experience. The learnings in phase one about the current state of partnerships in healthcare nationally will inform phase two implementation activities and lead to meaningful and measurable changes. Working together, our organizations bring collective expertise, experience, and a deep commitment to support healthcare organizations, communities, and individuals with lived experience in moving the needle on partnerships in healthcare,” said Beverley Johnson, President and CEO of the Institute for Patient- and Family-Centered Care.

The first phase of the initiative is funded through the Robert Wood Johnson Foundation, California Health Care Foundation, and The SCAN Foundation.

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About Camden Coalition

We are a multidisciplinary nonprofit working to improve care for people with complex health and social needs in Camden, NJ, and across the country. The Camden Coalition works to advance the field of complex care by implementing person-centered programs and piloting new models that address chronic illness and social barriers to health and well-being. Supported by a robust data infrastructure, cross-sector convening, and shared learning, our community-based programs deliver better care to the most vulnerable individuals in Camden and regionally. Through our National Center for Complex Health and Social Needs (National Center), an initiative of the Camden Coalition, we connect complex care practitioners with each other and support the field with tools and resources that move complex care forward. For more information, visit www.camdenhealth.org

About the Center to Advance Consumer Partnership

Founded by Commonwealth Care Alliance®, the Center to Advance Consumer Partnership (CACP) is a breakthrough innovation in healthcare design, delivery, and evaluation that helps to empower consumers as experts and enduring partners in shaping programs and action. Building on CCA’s own approach and track record, CACP works with a forward-looking healthcare and human services organizations to build capabilities, infrastructure, and culture that ensures consumers – who possess the expertise of lived experience – become enduring partners, meaningfully engaged in creating care systems that fulfill their needs. For more information, visit www.consumerpartnership.org.

About Community Catalyst:

Community Catalyst is a leading non-profit national health advocacy organization dedicated to advancing a movement for race equity and health justice. We partner with local, state and national advocates to leverage and build power so all people can influence decisions that affect their health. Health systems will not be accountable to people without a fully engaged and organized community voice. That’s why we work every day to ensure people’s interests are represented wherever important decisions about health and health care are made: in communities, state houses and on Capitol Hill. For more information, visit www.communitycatalyst.org. Follow us on Twitter @CommCatHealth.

About the Institute for Patient-and Family-Centered Care

The Institute for Patient- and Family-Centered Care (IPFCC), a non-profit organization founded in 1992, takes pride in providing essential leadership to advance the understanding and practice of patient- and family-centered care. By promoting collaborative, empowering relationships among patients, families, and health care professionals, IPFCC facilitates patient- and family-centered change in all settings where individuals and families receive care and support. IPFCC also serves as a central resource for policy makers, administrators, program planners, direct service providers, educators of health care professionals, researchers, design professionals, and patient and family leaders. For more information, visit www.ipfcc.org.

About PFCCpartners

PFCCpartners’ mission is to center the inclusive human experience of health. Reinvent through radical collaboration. And be a catalyst for system transformation. PFCCpartners is committed to building a health system that partners with people, and through communities as a partner in their wellbeing. For decades, PFCCpartners’ work has elevated community voices throughout the organizations and programs that provide health care in the US. Catalyzing improvements that center the priorities, preferences, and goals of patients and their family caregivers. For more information, visit www.pfccpartners.com.