Issue

Building impactful, equitable, and mutually beneficial partnerships with consumers, family caregivers, and people with lived experience (PWLE) is an ethical imperative for healthcare. While there has been growing interest among healthcare organizations to engage consumer and community members, many lack clear best practices for building and sustaining consumer partnerships.

Project goal

Develop a national strategy for authentic consumer/community engagement in healthcare and create tools, resources, and learning and coaching models that will meet the varied needs of healthcare stakeholders and consumers/PWLE to advance meaningful partnerships in their communities.

Core team partners

Organizations:

• Camden Coalition
• Commonwealth Care Alliance and its Center to Advance Consumer Partnership
• PFCCpartners
• Institute for Patient- and Family-Centered Care
• Community Catalyst

Individuals with lived experience

Background

The Camden Coalition, the Commonwealth Care Alliance and its Center to Advance Consumer Partnership, PFCCpartners, the Institute for Patient and Family Centered Care, and Community Catalyst are all national organizations deeply committed to advancing partnerships with consumers/PWLE.

Our collective work includes building meaningful consumer partnerships within our own organizations as well as supporting the growth of healthcare organizations’ capacity to build and sustain their own consumer/community engagement work.

We are able to do this work due to the relationships we each have with consumers/PWLE.

Community engagement and partnership work with consumers/people with lived experience has always been a core value of the Camden Coalition. To ensure that health and social care programs understand, respond to, and meet the needs of consumers and their communities, we believe that people with lived experience must be equal partners in the work.

Several important advancements in the national community engagement landscape have been important precursors for this project. 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” (NAM, 2022), the first product to come from their extensive work with a national expert Organizing Committee. In addition, the Center for Medicare and Medicaid’s announced a new requirement for health insurance companies that offer Dual Eligible Special Needs Plans (plans that serve people eligible for both Medicare and Medicaid) to establish and maintain an enrollee advisory committee (Hafner and Fish, 2022).

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 consumer partnerships, as well as by creating tools and resources for organizations and consumers/PWLE to translate these practices into action — together.

Project design

This project will include two phases: Phase 1 will involve a 12-month strategic planning and research period during which the Core Team will collectively:

• assess the current state of consumer/community engagement work nationwide;
• identify best practices through a series of focus groups and/or interviews with key stakeholders including PWLE who are engaged in work as consumer advisors/advocates;
• articulate a value proposition for consumers/PWLE to become engaged in this work; and
• create a business case/financial framework for partnerships between healthcare and consumers/PWLE, including identification of reimbursement pathways to support the financing and sustainability of such work for organizations.

At the end of phase 1, we will produce a comprehensive report that summarizes the current state of community engagement work in healthcare, the desired future state based on identified best practices and key opportunity areas, and, most importantly, a roadmap for how the field can close this gap — including the financial and policy levers that can create accountability and incentives for adoption of this work across healthcare.

In phase 2 of this project, we hope to focus on translating phase 1 findings and outputs into tangible products and opportunities to drive widespread adoption of effective consumer 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 our findings in phase 1.

This project launches in May 2023, with phase 1 concluding in April 2024.

For more information, please contact:

Evelyne Kane
Senior Program Manager, Community Engagement & Capacity Building
[email protected]

Taylor Brown
Program Assistant, Community Engagement & Capacity Building
[email protected]