By Tricia McGinnis, Center for Health Care Strategies and Andrea Ducas, Robert Wood Johnson Foundation

Medicaid is the largest health care program in the United States and impacts the lives of more than 76 million Americans, nearly one-quarter of the nation’s population. The program can play a powerful role in influencing the health and well-being of individuals and families.

State Medicaid programs can only be truly successful, however, if they are responsive to the needs and priorities of the clients they serve—not providers, but patients and their families. Medicaid officials understand this. However, in the resource- and time-constrained environments in which Medicaid staff operate, finding the right avenues for gathering meaningful consumer input can be a challenge.

The Robert Wood Johnson Foundation has been trying to address these challenges through its work to transform health and health care systems. As part of these efforts, the Foundation along with the Center for Health Care Strategies recently engaged experts, including representatives from across the patient advocacy world, around this issue. These experts include leaders from Altarum, American Cancer Society, Cancer Action Network, Community Catalyst, Georgetown Center for Children and Families, Nonprofit Finance Fund, and the Patient Advocate Foundation.

Here are some practical, insightful suggestions from these partners regarding how Medicaid can better engage patients in the policymaking and implementation process.

  1. Meet people where they are. Policymakers and their staff should get out of stale conference rooms and into the communities where low-income people live, work, and go to school. Visit a range of counties (those with good and poor health outcomes) to understand what is facilitating or getting in the way of helping patients achieve better health. States can prioritize program planning and budgeting for this kind of learning and outreach as part of how they do business.
  2. Go beyond traditional, formal public meetings. Think about non-traditional venues and approaches to hear from patients. Experts suggest open enrollment sessions, local radio call-in shows (e.g., the Mayor of New York City participates in an hour-long “Ask the Mayor” radio call with WNYC), events with local celebrities, and random-dial text messages to solicit feedback.
  3. Start early and “de-wonk” the conversation by using plain, clear language. Engage enrollees around their vision for Medicaid during the conceptual phase of policy development and “de-wonk” the conversation by using everyday terms. Make it a goal for average citizens to know what Medicaid can do for them.
  4. Don’t stop engagement efforts after the design stage. Yes, meet with beneficiaries and their families early during implementation to hear how changes feel on the ground, but don’t stop there. Follow up. And follow up often. Monthly implementation calls with a pre-identified set of impacted enrollees can help Medicaid troubleshoot in real time.
  5. Ensure that leadership is at the table. Leadership presence is essential. State Medicaid directors, health plan CEOs, and leaders from budget and finance must be part of these conversations and hear firsthand where policy intersects with and impacts patients’ lives. In other words, if your state Medicaid office sends staff to go out and learn in the community, make sure leaders attend too.
  6. Partner with key community stakeholders. Partner with umbrella associations of multi-sector agencies like Catholic Charities that can offer representation of different communities. These are important groups to leverage because they can reach populations that are going to be very hard for state Medicaid agencies to reach. Talk with them about engagement formats that are will work best for their constituencies.
  7. Let consumers know that their voices are heard through actions. Report back to people on the impact of their input. Share decisions that were made as a direct result of patient feedback and ideas. And do so in multiple formats. Nothing should “end” with a report on a state website.

Some states are already refreshing their approaches to engaging patients in designing system transformation efforts. For example, Massachusetts Medicaid (MassHealth) developed the One Care Implementation Council to give consumers an active role in implementing the Financial Alignment Initiative in ways that truly reflect patient preferences. The OneCare Council enabled consumers to go beyond serving in traditional advisory roles and instead become deeply involved as partners to the state in program implementation.

The Council, which was comprised of a diverse group of patients, family caregivers, community organizations, and providers, helped the state work through a range of implementation issues including enrollment processes, the effective use of assessment tools and care plans, care coordination strategies, and the use of peer supports. State partners attended council meetings, ensuring that decision makers were at the table to hear patient experience and input and could incorporate feedback into state actions.

What more can be done to engage Medicaid beneficiaries, and how can we make these ideas easier to implement? Share your ideas via the Robert Wood Johnson Foundation Culture of Health Blog!

This blog post was originally published in the Robert Wood Johnson Foundation’s Culture of Health Blog and has been reprinted here with permission.

Posted: October 2023