By Anna Spencer and Armelle Casau, Center for Health Care Strategies
Engaging with families is an effective way to understand community needs and priorities — and an essential strategy for advancing health equity. While health care systems and Medicaid programs increasingly recognize the need to involve patients and families in policy and program development, for too long families have been left out of decision-making processes. As a result, many programs and policies fail to fully address the challenges families face, greatly impacting their health and daily lives and contributing to ongoing health disparities. Recognizing the value of family perspectives, Groundwork Ohio, a nonpartisan policy and advocacy organization dedicated to early learning and healthy development of young children, launched the Center for Family Voice. This center engages Ohio families in the development of programs and policies that directly impact the health, education, healthy development, and well-being of their children. The Center for Health Care Strategies (CHCS), with support from MolinaCares Accord, helped inform the development of the Center for Family Voice by conducting an environmental scan of national organizations to uncover promising practices for effective family engagement. This blog post explores seven key considerations for health care organizations, Medicaid programs, and advocacy organizations to facilitate family engagement in program and policy design and implementation.
1. Reduce Barriers to Participation
Families, particularly those with very young children or with special health care needs, often face barriers to participating in community feedback activities. Holding sessions at convenient times for working families and in locations that are easily accessible can reduce barriers associated with work schedules and transportation difficulties. Offering paid childcare, as well as virtual formats, can also increase participation. Interpretation and translation services can support meaningful engagement from the full range of family and community members. It is also important to create a welcoming environment by providing meals, using culturally relevant practices, and acknowledging faith-based observances and activities. To reduce participation barriers for families with young children looking to advocate for child well-being issues, ZERO TO THREE — a national nonprofit focused on ensuring that all babies and toddlers have a strong start in life — created a Think Babies Toolkit, which provides advice, resources, and opportunities to help families engage policymakers through digital and face-to-face advocacy. They also created an easy-to-use virtual forum for sharing personal stories to help inform program development and policymaking.
2. Develop Relationships and Build Trust
Establishing meaningful and trusting partnerships with families takes time and a genuine commitment for long-term engagement. It is important to acknowledge the ingenuity and expertise of families and demonstrate humility in co-creating programs and supports. Health care partners can tap into existing systems and family networks (e.g., Patient and Family Advisory Councils). They can also partner with trusted community sources, including community-based organizations and religious leaders. Adopting strategies that foster buy-in and collaboration build trust and sustain family engagement.
3. Focus on Racial and Health Equity
To explicitly focus on racial and health equity and help disrupt existing systemic racism in health care and other systems, organizations should embed a focus on equity from development to implementation and evaluation of programs and policies. Additionally, organizations should seek to include staff with lived experiences that mirror those of engaged families to lead engagement efforts and provide meaningful peer connections. Using a trauma informed approach, organizations can create safe spaces where families can connect with and get support from peers, take strengths from their communities, and share their stories and insights. Queens Village, an Ohio-based organization dedicated to building community collaboration, uses these types of strategies to amplify Black women’s voices to bring attention to racist systems and racial disparities in birth outcomes. Engaging and partnering with local organizations led by communities of color is a critical family engagement strategy that can improve racial and health equity.
4. Provide Compensation
Compensation for parents’ time and expertise, in the form of stipends, hourly wages, honoraria, or cash and gift cards, as well as paid childcare and meals, acknowledges the value of the personal experience that families bring to these conversations. Additional incentives like free diapers can be helpful for families with young children. Reimbursement for incurred costs to participate, including bus fare and parking, is also necessary. For families that are deeply engaged and might accumulate significant compensation, it is important to communicate the potential financial impact on their public benefits and possible tax implications. To be fully transparent, seek their input when structuring compensation.
5. Ensure Transparent and Effective Communication
It is vital to have systems in place that support transparency and intentionality. Clarity regarding the goals and mutual expectations of family engagement activities will help build trust and create a clear vision for the purpose and potential effects of family contributions to policy and program discussions. It is also important to give families the final say on whether and how their personal stories are shared with policymakers or publicly through media work. Consider feedback mechanisms to help families understand what was learned through their participation and shared with decision-makers, as well as the potential short- and long-term impacts of their contributions on systems changes, program development, or policy implementation.
6. Create Opportunities for Power Sharing
Formal approaches to power-sharing include the co-development of agendas and priority setting at the earliest stages possible so that families are engaged at the outset. One other approach is a distributed leadership model, which collaboratively fosters shared governance and decision-making that can help guide family engagement interactions. Using a human-centered design approach can empower families to collaboratively identify home-grown and appropriate solutions to community priorities. Vital Village Networks, a network of residents and organizations committed to maximizing child, family, and community well-being, intentionally focuses on power-sharing strategies in their community networks to promote equitable and community-driven approaches to improve child and family well-being.
7. Provide Training Programs for Parents
Many families interested in advocacy or sharing feedback with health care organizations or agencies are unsure how best to engage with systems and decision-makers. These families can benefit from training programs and supports that build advocacy skills — including how to effectively share their stories, research local community data, testify before legislators, write letters to the editor, or follow lobbying rules — and also from leadership skills gained through workshops, mentoring, and coaching. Family Voices, a national family-led organization of parents and caretakers of children and youth with special health care needs, provides a variety of leadership and training programs for families interested in becoming agents of change to improve health care services and policies. They also provide trainings on validated assessment tools that can measure authentic family engagement in systems change.
Incorporating the lived experience of families, particularly people from Black and Indigenous communities and other communities of color, into program design and policy development discussions can promote a shared understanding of health priorities and play a critical role in advancing health equity. The strategies described above, as well as those outlined in a recent Center for Family Voice report, offer guidance for state Medicaid programs, health systems, and child well-being advocacy organizations looking to more intentionally and meaningfully engage with families. CHCS will be exploring these themes in an upcoming webinar, Engaging Families in Program and Policy Development to Advance Health Equity, on September 14 at 1:00 pm ET. The webinar will include speakers from three family-serving advocacy organizations, Groundwork Ohio, Queens Village, and Family Voices, who will share their experiences engaging with parents on program and policy development.