Community Engagement: A Foundation for Health Equity and Resilience

Community engagement has a long history in health care and public health. Recognizing the need for public health professionals and community leaders to have a shared science base and practical guidelines for community engagement in public health, the Centers for Disease Control and Prevention (CDC) established the Committee for Comunity Engagement in 1995. This committee, composed of representatives of CDC and the Agency for Toxic Substances and Disease Registry (ATSDR), published Principles of Community Engagement in 1997.¹ In that report, community engagement was defined as “the process of working collaboratively with groups of people who are affiliated by geographic proximity, special interests, or similar situations with respect to issues affecting their well-being.”¹

Nine principles were described and discussed, including being clear about the purposes of engagement; being knowledgeable about the community’s structures, norms, and values; going to the community, establishing relationships, and building trust; and partnering with the community to create change and improve health. Interest grew rapidly, including within the new Clinical and Translational Science Awards program of the National Institutes of Health (NIH) as well as the CDC’s Prevention Research Centers and the practice-based research networks of the Agency for Health Care Research and Quality.

A second edition of Principles of Community Engagement with expanded case studies was published in 2011, supported by the NIH Clinical and Translational Science Awards Consortium, CDC, and ATSDR.¹ A Spanish version was soon added to help facilitate and expand access, and free online access to both versions was provided by ATSDR. Interest soared, with millions of downloads from 170 English-speaking and more than 60 Spanish-speaking countries. Community engagement became increasingly prominent within the sponsoring agencies as well as the Patient-Centered Outcomes Research Institute. Disparities in COVID-19 response and morbidity and mortality, especially among historically underserved and racial and ethnic populations and rural communities, led to heightened attention to the important role of community organizations and of partnerships with public health and primary care groups.²

In 2023, CDC, ATSDR, and the Clinical and Translational Science Awards Consortium, along with the NIH’s National Center for Advancing Translational Sciences, began work on a third edition of Principles of Community Engagement. The third edition adds a tenth principle of trustworthiness, specifically noting that trustworthiness is essential for effective partnerships and for advancing health equity (Figure 1). The new edition also emphasizes the importance of sustained partnerships and refines the definition of community engagement:

Community engagement is an ongoing, evolving process of multidirectional communication with and for people to solve the problems and address the concerns that matter to them. The process should be durable, long-lasting, and equitable to all who participate. The ultimate goal is to learn, implement, and disseminate the practices of equitable partnering [and] influence policies, programs, and practices for the betterment of the community.

FIGURE 1—

The 10 Principles of Community Engagement

Source: Centers for Disease Control and Prevention.¹

A parallel effort was launched by the National Academy of Medicine (NAM) in partnership with the Robert Wood Johnson Foundation and the California Health Care Foundation. This effort convened a diverse group of academicians, community leaders, designers, and policy advisors to identify concepts and metrics that can best assess the extent, process, and impact of community engagement. The group developed a conceptual model for advancing health equity through transformed systems for health centered on meaningful community engagement.³ A NAM commentary described the development and unique content of the conceptual model and posited four domains of measurable outcomes: strengthened partnerships and alliances, expanded knowledge, improved health and health care programs and policies, and thriving communities.³

Seven impact stories from across the country demonstrate a wide range of engagement activities with diverse communities and health-related focus areas, illustrating the complexity of community engagement across the model’s four domains and providing examples for implementation.⁴ Twenty-eight assessment instruments (standard questions or question sets) that could be used to measure meaningful engagement were derived from an in-depth review of almost 1500 articles.⁵ These instruments bridge scientific rigor and community expertise and contain more than 1000 questions that lead back to the model’s domains and indicators. Detailed summaries of each instrument highlight key features to assist end users in selecting the most appropriate ones for their specific community context.⁶

The NAM effort expands on the concept of meaningful engagement, concurring with the original observation of the first edition of Principles of Community Engagement that meaningful community engagement “requires working collaboratively with and through those who share similar situations, concerns, or challenges.” The NAM commentary notes that “meaningful community engagement often requires decision makers to defer to communities and move to power sharing and equitable transformation—necessary elements to ensure sustainable change that improves health and well-being.” It also requires “working closely with communities to understand their preferences on how, when, and to what level and degree they want to be engaged.”³

The role of community engagement in health care, public health, and research continues to grow. In 2023, the NIH Common Fund, with many of the NIH centers, institutes, and offices, launched the Community Partnerships to Advance Science for Society (ComPASS) Program to advance the science of health disparities and move forward health equity research. The goals of ComPASS are to (1) develop, share, and evaluate community-led health equity structural interventions that leverage partnerships across multiple sectors to reduce health disparities and (2) develop a new health equity research model for community-led, multisectoral structural intervention research across NIH and other federal agencies.”⁷

Twenty-five Community-Led Health Equity Structural Interventions (CHESI) projects plan, implement assess outcomes and implement sustainability plans for community-led efforts related to social determinants of health with research organizations as partners. In 2024, health equity research hubs began to provide technical and scientific support to the CHESI; while a ComPASS coordination center initiates research activities and supports a national health equity research assembly of federal and nonfederal partners to provide consultation and support to the interventions. In addition, other recent NIH programs such as All of US⁸ and the Community Engagement Alliance⁹ seek to engage diverse community members in research with and about them. The Community Engagement Alliance is planning to expand to maternal health, climate health, health knowledge, primary care research, and other public health topics.

In particular, the National Institute for Minority Health and Health Disparities has embraced community engagement in its work on health equity, noting the importance of meaningful engagement of community collaborators at each stage of program development or research design, implementation, and dissemination.¹⁰ The institute’s Health Equity Action Network, with multiple reports within this special issue, demonstrates multidirectional collaboration between research teams and local community members, community-based organizations, and partners.¹¹ This work reflects the growing need for structural competence in public health and health care and, especially, in health equity research.¹²

Similarly, the National Center for Advancing Translational Sciences held more than 40 listening sessions, including sessions specifically with community organizations, in developing its 2025 to 2030 strategic plan, which notes the importance of developing trust, reaching diverse communities, and engaging communities:

Lack of community engagement also negatively impacts the translation of research observations into health solutions. We can change that by engaging communities on how translational research may benefit them and how they can inform translational science to ensure research outcomes are more meaningful. To nurture trust and trustworthiness, we must engage communities with respect and humility.¹³

These models of community engagement for advancing health equity have broad utility. There is a particular need in mental health, wherein growing rates of mental disorders and related deaths, especially among young people and historically underserved communities, call for new community-engaged approaches, including prioritization of efforts with community leaders and organizations to assess and acknowledge community strengths, assets, and cultural mistrust; increase resource allocation to community organizations and community-based participatory research; and support community organizations in providing training and care to members of their communities.¹⁴

These efforts are under way, with the Substance Abuse and Mental Health Services Agency releasing an evidence-based resource guide, “Community Engagement: An Essential Component of an Effective and Equitable Substance Use Prevention System.” The resource guide comments that “[c]ommunity engagement brings together the skills, knowledge, and experiences of diverse groups to create and/or implement solutions that work for all members of the community.”¹⁵

In addition, the Food and Drug Administration has released new draft guidance intended to diversify and enhance clinical trial participation by members of historically underrepresented populations, noting the potential for implementing sustained community engagement.¹⁶ The Patient-Centered Outcomes Research Institute has announced new foundational expectations for partnerships in research, including diversity and representation, early and ongoing engagement, dedicated funds for engagement and partner compensation, and meaningful inclusion of partners in decision making.¹⁷ Primary care is a focus as well, with the Agency for Healthcare Research and Quality releasing a new brief on how community engagement supports whole-person primary care.¹⁸

Attention to community engagement is not restricted to those concerned primarily with health and health care. The National Science Foundation’s new Center for Braiding Indigenous Knowledge and Science breaks new ground in co-development of research. As noted in an editorial published in Science:

There is a global groundswell of Indigenous-led research on stewardship of lands and waters, providing opportunities for Indigenous and Western knowledges to flourish together. A major step in this direction was announced last September by the US National Science Foundation, in its establishment of the Center for Braiding Indigenous Knowledges and Science (CBIKS). Led by a team of 54 predominantly Indigenous scholars and headquartered at the University of Massachusetts, Amherst, CBIKS aims to focus on complex issues at the nexus of nature and culture. The research teams, which span the globe, will address climate disruption, food insecurity, and cultural survival through learning from Indigenous community-based approaches. The goal is to identify and advance models of ethical and effective integration of Indigenous and Western sciences by creating mutually respectful and reciprocal relationships between them. CBIKS will develop generalizable approaches for a diversity of scientific communities (p. 243).¹⁹

Other sectors are addressing the underlying drivers of poor health through robust community engagement. The Environmental Protection Agency’s new Environmental and Climate Justice Community Change Grants program has announced a notice of funding opportunity for approximately $2 billion to benefit disadvantaged communities through projects that reduce pollution, increase community climate resilience, and build community capacity to address environmental and climate justice challenges. These place-based investments will be focused on community-driven initiatives responsive to community and stakeholder input.²⁰

These federal efforts are increasingly linked. The US Department of Health and Human Services Office of Disease Prevention and Health Promotion leads an effort across multiple federal agencies to strengthen the vital conditions necessary for improving individual and community resilience and well-being nationwide.²¹ The Federal Plan for Equitable Long-Term Recovery and Resilience targets federal government leaders and departments, and key actions include fostering community-centered collaborations and achieving equity and eliminating disparities by fostering sustained resources in communities that have been historically marginalized or disadvantaged. Thriving Together is a national platform of related actions and ideas produced by the Community Initiatives Network and ReThink Health in partnership with the Community Commons, the Well Being Trust, and the Well Being in the Nation Network.²²

States also have a critical role in supporting community engagement for health equity. According to the Robert Wood Johnson Foundation report Transformational Community Engagement to Advance Health Equity, “Community engagement is one of the ways states are attempting to establish and maintain trust while improving the accessibility and quality of healthcare services for everyone.” The Virginia Department of Medical Assistance Services, which serves 1.25 million Medicaid recipients, is engaged in several strategies including an internal landscape analysis, an advisory council of diverse participants with required attendance by agency leadership, and transparent tracking and reporting. The Colorado Department of Health Care Policy and Financing, with 1.6 million Medicaid enrollees, embraces community engagement as part of its mission to improve health care equity, access, and outcomes, including collaboration with members with limited English proficiency, compensation for community-based organizations, and ongoing public evaluations with member engagement.²³

In addition, the California Department of Public Health has several efforts under way including the Children and Youth Behavioral Health Initiative, which is reimagining how California supports children, youths, and families by listening to and centering on their needs across the state’s diverse communities.²⁴ The North Carolina Department of Health and Human Services has a public commitment to community engagement in championing equitable health outcomes for the 10 million people it serves, including involving community members, those with lived experiences with health issues, and community organizations and advocacy groups in decisions about policies, services, and operations.²⁵ The department’s “Community and Partner Engagement Guide” describes how engagement underlies and supports its commitment to health equity.²⁶

Community engagement has important roles in programs beyond the United States. The US Department of State’s Emergency Plan for AIDS Relief (PEPFAR) actively partners with community groups globally at every stage of planning, programming, and implementation. As noted by PEPFAR, communities provide services that are crucial to realize effects on the epidemic; advocate on behalf of those affected; hold governments accountable; promote human rights, especially for vulnerable groups; identify challenges and gaps in health care delivery; support data collection; and promote transparency.²⁷ The themes of trust and community engagement are also prominent in the recent revision of the Declaration of Helsinki, reflecting the need for research ethics committees to take into account local contexts.²⁸ As recently noted by the director-general of the World Health Organization:

We cannot assume or expect trust; we must earn it. That begins with listening to the people we serve, to understand their needs and preferences, and the reasons they believe mis- and disinformation.²⁹

However, it is all too common for those seeking to follow such guidance to find that the challenge resides not in engaging with communities but in navigating systems that do not recognize or support shared partnerships in funding, communication, or policies, especially with respect to regulations related to community-engaged research.³⁰ Numerous interventions designed to address these barriers are under way. In addition to the efforts reported here and elsewhere in this issue, the Journal of Clinical and Translational Science has a themed issue in process, “Institutional Transformation to Support Community-Based Participatory Research and Patient- and Community-Engaged Research.”³¹ Similarly, the Association of Academic Medical Colleges Center for Health Justice has been established to break down institutional silos, build better partnerships, highlight community voices, and improve the health of communities.³²

Several themes consistently arise across these multiple efforts to engage communities:

• •Start meaningfully engaging with local communities. Go to them; listen attentively for priorities, strengths, and assets; value their expertise; ask for guidance; and continue to work together.
• •Learn what is already under way and what is being planned and work to strengthen what has already begun before proposing new programs.
• •Use new data to inform discussions, including interpretation by those with lived experiences, as existing data may be incomplete or inaccurate or may not reflect community priorities.
• •Support and empower the community’s ability to engage and lead.
• •Build institutional capacity for long-term, sustained engagement and for trustworthiness.
• •Be sincere, flexible, and humble and genuinely listen. The journey to health equity is long and there is have much to learn.

Community engagement has deep roots in public health. Sustained, meaningful engagement with diverse communities is the foundation for advancing health equity, fostering community resilience, and earning trust for the challenges we face now and those yet to come.