Abstract [from journal]
Context: Consumer engagement early in the process of health care policymaking may improve the effectiveness of program planning and implementation, promote patient-centric care, enhance beneficiary protections, and offer opportunities to improve service delivery. As Medicaid programs grow in scale and complexity, greater consumer input may guide successful program design, but little is known about the extent to which state agencies are currently engaging consumers in the design and implementation of programs and policies, and how
this is being done.
Methods: We conducted semistructured interviews with 50 Medicaid program leaders across 14 states, employing a stratified purposive sampling method to select state Medicaid programs based on US census region, rurality, Medicaid enrollment size, total population, ACA expansion status, and Medicaid managed care penetration. Interview data were audio-recorded, professionally transcribed, and underwent iterative coding with content and thematic analyses.
Findings: First, we found variation in consumer engagement approaches, ranging from limited and largely symbolic interactions to longer-term deliberative bodies, with some states tailoring their federally mandated standing committees to engage consumers. Second, most states were motivated by pragmatic considerations, such as identifying and overcoming implementation challenges for agency programs. Third, states reported several common facilitators of successful consumer engagement efforts, including leadership commitment, flexible strategies for recruiting and supporting consumers’ participation, and robust community partnerships. All states faced barriers to authentic and sustained engagement.
Conclusions: Sharing best practices across states could help strengthen programs’ engagement efforts, identify opportunities for program improvement reflecting community needs, and increase participation among a population that has traditionally lacked a political voice.