Authors: Armelle Casau, Center for Health Care Strategies
By effectively partnering with families, health care providers and policymakers can drive health care transformation, fostering more family-centered, holistic, and equitable care across the lifespan. Through such partnerships, families and youth can share the challenges they encounter when navigating often fragmented health care systems. This feedback is crucial to better support the health and well-being of the 37 million children and youth in the U.S. served by Medicaid and the Children’s Health Insurance Program, as well as the 14 million children and youth with special health care needs who often require more specialized services to thrive. Health care providers and policymakers, including Medicaid agencies, can learn from — and co-create solutions with — families and youth to enhance family-centered care at both the individual care and systems levels, prioritizing families’ needs, community supports, expertise, preferences, and values.
For the past four years, the Center for Health Care Strategies (CHCS), with support from the Robert Wood Johnson Foundation, worked with advisors on the Accelerating Child Health Transformation initiative to explore strategies to transform child health care, including fostering partnerships between patients, families, and providers. The National Academies of Sciences, Engineering, and Medicine recent consensus study on approaches for improving health care for children, youth, and families also focuses on co-creating programs and systems with youth, families, and communities.
This blog post shares insights on effective partnerships from Nikki (Charisse) Montgomery, MA, MEd, GPAC, Director of Strategy and Communications at Family Voices, who serves as a family engagement advisor on CHCS’ Accelerating Child Health Transformation initiative. Nikki has both lived experience as a parent of a child with complex health care needs and professional experience as an educator, patient advocate, and health literacy expert.
Q. Why is co-creation with families critical in health care transformation?
A. Co-creation means building something together that works for a family. When you design a program or create a plan for a family that doesn’t include what the family’s needs or their realities are, you often get what people call noncompliance. Noncompliance is actually just that the plan that the provider created doesn’t work for that person. Instead, planning, deciding, and leading together is going to create something that works for the family rather than against the family. Co-creation is real partnership with families, and understanding who they are and what they need in a very individualized way.
Q. How does co-creation help build trust at the care delivery level?
A. In my experience, co-creation can lead to a lot of trust in health care. My son has very complex medical needs and many specialists that care for him. When I can have a conversational relationship with a provider, one where we can both give and receive information, it builds trust. It builds the provider’s trust to know that I’m a family member who cares about my child and who wants to know more, and it builds my trust to know that the provider cares about my child and wants to learn from me so we can co-create solutions together. That kind of partnership has been wonderful in my son’s medical journey and in creating solutions with providers. I can bring them information and say, here’s what I found — how can we use this together? How can we improve the care delivery for my child together? That type of partnership is a real collaboration. This is what trust can feel like, with us working on the same team.
Q. How does co-creation support health care transformation at the systems level?
A. We often think about co-creation with families as an individual one-to-one task at the care delivery level, and it is fantastic when that happens. And it should happen for every child and every family, but it also has to happen at the level of systems change where policies and programs are being created. Families need to be at the table for that. It’s as simple as nothing about us without us. Families need to be involved in policy changes and in decisions that are going to affect their experience of health care. And you can’t know what that experience is unless you are talking to the people who are experiencing it.
Q. What are some considerations for family-serving agencies, including Medicaid, to meaningfully engage families in co-creating change at a systems level?
A. Meaningful family engagement involves families from the beginning to the end of a change process, as contributors and decision makers. One way to gather family input and better understand pain points and opportunities in service delivery is to host family engagement sessions that can guide the work of the agency or guide a specific improvement or process change.
Language is important when recruiting families. For example, in the marketing domain, the term “focus group” is common and understood. But when it comes to health care, a “focus group” might be less appealing to families, especially for people from populations that have been historically misled or exploited by researchers. Engaging families for a “listening session” or “town hall” may better appeal to families during the recruitment process, and can lead to more open conversation and a more even power dynamic. It’s also crucial to use plain language when engaging families. Only 12 percent of English-language speakers have proficient health literacy skills to find, understand, and use information and services to inform health-related decisions and actions for themselves and others.
Q. What else is needed for health care transformation?
A. One aspect of health care transformation that I don’t think we talk about enough is community partnership. Children and their families exist in the context of the family unit, but also in the context of their larger community — the better we can connect to what’s happening in their communities and the solutions that are happening in those communities, the better health care systems can meet the needs of families. That kind of grassroots care that focuses on what communities are experiencing, what their needs are, and organic and community-led solutions is really important in health care transformation.