In this Q&A, the Center’s Smita Sanwardeker sits down with Asia Williams, MPH, Program Officer at the National Academy of Medicine’s Leadership Consortium. She leads the Trust & Engagement Action Collaborative, where she works to strengthen trust and evaluate community voices in healthcare systems. With a background in public health, quality improvement, and patient engagement, Asia brings both personal and professional insight to the urgent need for meaningful community partnerships.
Smita spoke with Asia about what it takes to build trust, the role of caregivers, and how to ensure that value in healthcare truly reflects what matters to patients and communities.
How do you define meaningful community engagement, and why is it essential in a value-based healthcare system?
In a key project I led at the National Academy of Medicine (NAM), Accessing Meaningful Community Engagement (ACE), we use the Center for Disease Control and Prevention’s second edition of the Principles of Community Engagement as our basis for defining community engagement, adjust it for the significant variations in engagement efforts.
Community engagement is essential in a value-based healthcare system because it involves working collaboratively with those representing a community, however defined. Meaningful engagement excludes efforts that restrict community representation, decision-making power, access to resources, or the timeframe for engagement. It is not simply assembling a one-time focus group or engaging in tokenism.
The project was established on the premise that healthcare programs must align with community interests and needs to remain effective. It aims to create a range of evidence-based indicators for measuring meaningful engagement. Central to the model are principles like co-equality, trust, and inclusivity. The model includes a feedback loop represented by arrows connecting community engagement, core principles, and meaningful engagement domains to larger contextual factors (social, political, economic, and environmental ). With each cycle, we improve, advancing equity in health systems.
What are the key elements of the Trust & Engagement Action Collaborative and how do they align with the goals of value-based care?
The Trust & Engagement Action Collaborative (TEAC) is one of our four collaboratives under the NAM Leadership Consortium (LC), which unites leaders from various health sectors to promote a continuously learning health system. This system aligns science, informatics, incentives, and culture to foster improvement, innovation, and equity. TEAC represents culture, while the Value Incentive & Systems Action Collaborative (VISAC) focuses on incentives.
To create an effective health system, these components must collaborate rather than operate in silos. Engaging the intended recipients of the system is vital across all collaboratives. TEAC emphasizes identifying actions that rebuild trust and engage individuals, families, and communities in achieving relevant health goals. Our approach prioritizes delivering quality care that enhances experiences, improves outcomes and promotes equity.
As a caregiver and public health professional, what gaps do you see in how the system values the role of caregivers?
As a caregiver, my family was fortunate to receive support from the Department of Veteran Affairs during my father’s six-year battle with Amyotrophic Lateral Sclerosis (ALS), including financial assistance, expert providers, and essential equipment. Despite this support, the emotional toll on my family was overwhelming. I often think about those enduring long-term caregiving challenges without such aid, facing financial and logistical burdens. Many carry these heavy weights, a reality for millions of Americans.
Caregivers’ expertise is often undervalued compared to that of traditional healthcare providers, despite providing critical support, as evident during the COVID-19 pandemic when families had to care for loved ones at home.
At the state level, several innovative initiatives have emerged to recognize caregivers, through integration into care plans, financial compensation, or supportive services. (The National Academy for State Health Policy’s website offers more information on these initiatives.) However, these are rare for those not on Medicaid. Nationally, the RAISE Family Caregivers Act marked a significant advancement, with the Family Caregiving Advisory Council set up under this law working actively. Its 2024 report on a National Strategy to Support Family Caregivers provides valuable insights for collaboration. I hope this strategy evolves to expand formal caregiver recognition and reimbursement opportunities. After all, we invest in what we truly care about.
Based on your experience, what factors build or break trust in healthcare settings, and how can systems be improved?
Trust is invaluable. It must be earned and actively nurtured, as broken trust may never be restored. To earn it, recognizing that patients and communities are experts in their health and experiences is crucial. Putting the person first, listening, and checking in to confirm understanding, is essential. Trust often breaks down due to a lack of transparency, as seen during the COVID-19 pandemic with mixed messages about prevention and treatment. Although information was evolving, transparency during uncertainty is crucial for maintaining communication and preserving trust.
How can research institutions and health systems better involve communities from the start, not just as participants, but as partners?
Shifting from viewing communities as participants to partners is essential. Engaging them from the outset requires redefining valuable evidence and expertise. Non-traditional forms of knowledge are crucial, and lived experience is vital for understanding outcomes. Treating communities as partners throughout the research process, whether in topic identification, study co-creation, research execution, or dissemination, is critical, including proper compensation for their time. Effective community input can be achieved by sharing leadership roles and continuously evaluating to align outcomes with community goals and priorities.
What advice would you give organizations trying to engage communities around complex health issues like cost, access, or trust?
Engaging the right people is crucial requiring active dialogue with communities to identify partners. The harmful label “hard -to-reach communities” fosters a damaging narrative that blames communities for difficulties in engagement, overlooking systemic barriers and distrust. When making yourself accessible, ensure these individuals confirm your understanding of the problems. To achieve meaningful, sustainable change, organizations must be ready to pivot towards what the community prioritizes.
Where do you see opportunities for patients and caregivers to shape how value is defined and measured in healthcare?
Patients and caregivers can shape healthcare value by developing metrics that reflect what matters most, a crucial step for ensuring relevance and accuracy in value measurement and creating assessment plans. Engaging them requires openness to redefining care and health, focusing on the whole person, their well-being, quality of life, and ability to thrive, as health exists beyond the confines of a healthcare system.
As I reflect on my conversation with Asia, she presents a compelling vision for enhancing equity and trust in healthcare systems through authentic community engagement. Her work emphasizes the importance of amplifying patient and caregiver voices, incorporating lived experiences into value assessments, and establishing inclusive partnerships from the outset. As the field shifts toward more person-centered and value-based care models, her insights offer an essential framework for aligning healthcare strategies with the needs and priorities of the communities they serve. — Smita Sanwardeker, Director of Communications
