D-SNP Enrollee Advisory Committees: A Step Toward Meaningful Consumer Engagement For Dually Eligible Individuals

Editor’s Note

This article is the latest in the Health Affairs Forefront major series, Medicare and Medicaid Integration. The series features analysis, proposals, and commentary that will inform policies on the state and federal levels to advance integrated care for those dually eligible for Medicare and Medicaid.

The series is produced with the support of Arnold Ventures. Included articles are reviewed and edited by Health Affairs Forefront staff; the opinions expressed are those of the authors.

The series will run through August 30, 2022; submissions are accepted on a rolling basis.

Consumer engagement is a critical tool for understanding patients’ needs, identifying gaps in health systems, and advancing health equity and person-centered care. To be meaningful, consumer engagement must not be just for show but should be informed by rigorous evidence and use tested methods. Without this, consumer engagement may actually be harmful or perpetuate inequalities.

Consumer engagement is especially important for dually eligible individuals because they have complex health and social needs that often go unmet due to lack of integration between the Medicare and Medicaid programs. However, consumer engagement aimed specifically at dually eligible individuals (especially those with complex health needs) and their caregivers has been limited. This is partly due to the fact that the 12 million individuals who are dually eligible are segmented into different programs across states, including Medicare-Medicaid Plans (MMPs) that operate under the Financial Alignment Initiative (FAI), dual-eligible special needs plans (D-SNPs), PACE plans, and a combination of Medicaid managed care plans and fee-for-service. Across these programs, requirements to engage with enrollees vary. While MMPs and PACE plans are required to have consumer advisory councils that allow enrollees to participate in shared governance, dually eligible individuals who receive services through fee-for-service or a Medicare Advantage (MA) plan have fewer opportunities to advocate for their specific needs.

As the FAI demonstration periods end in 2023, it is expected that many states will transition their MMPs to D-SNPs. We therefore welcomed CMS’s recent final rule that will require any MA organization that offers D-SNPs to establish and maintain an enrollee advisory committee (EAC). These committees will offer an opportunity for members’ experiences to drive improvements in the services they receive and the integration of their benefits. The rule requires that these advisory committees must, at a minimum, solicit input on ways to improve access to covered services, coordination of services, and health equity among underserved populations, and that they be “reasonably representative” of the dually eligible individuals served. However, CMS declined to be prescriptive about how MA organizations may meet these requirements. It did not specify the frequency, location, format, participant recruiting and training methods, or other parameters for these committees beyond certain minimum requirements.

Ensuring That EACs Facilitate Shared Governance

We share many of the concerns that commenters raised about these flexibilities, including whether, and how, EACs’ feedback will be used to shape policy and improve integration, quality of care, and member experience. But for now, CMS has chosen to defer to states to specify how committees will be run, what their outcomes should be, and how they will be monitored to ensure they are meeting their intended purpose. As states and plans prepare to stand up D-SNPs with EACs, we offer three recommendations for ensuring that EACs function as a mechanism for shared governance, not merely as a compliance exercise or as a mini focus group that serves the needs of the plan.

States Should Articulate Requirements For “Reasonable Representativeness” In EACs

In the final rule, CMS provided considerations for achieving representation on EACs but ultimately left it up to states and plans to decide how to assemble an EAC that takes into account the diverse backgrounds and needs of dually eligible individuals. While this affords states and MA organizations the flexibility to create EACs that reflect their member population, it could result in wide variations across states and plans in ways that prevent EACs from fulfilling their intended purpose. Without clearly articulated representation requirements, certain segments of individuals could be excluded, including those with low English proficiency, those residing in rural areas, or those who require accommodations such as individuals with disabilities. Therefore, states should establish, and publish, clear expectations and guidelines on the dimensions of D-SNP representation that are important for EACs. These dimensions include: racial/ethnic, linguistic, and sexual identity/gender minorities; urban and rural members; community-dwelling and institutionally based individuals; and members with disabilities or those who require long-term services and supports. States should also consider whether representation by caregivers may be needed when participation for disabled individuals is burdensome.

Furthermore, states and plans should also ensure that EACs have representation across D-SNP type. Because an EAC can be established at the level of the MA organization, it may represent a number of D-SNP types including fully integrated (FIDE) or highly integrated (HIDE) plans, as well as institutional plans (I-SNPs). The size and service areas of these plans can also vary, which can mean that D-SNP members may experience different issues depending on the package of benefits they receive and where they are located.

Citing experiences from the FAI, CMS acknowledged that recruitment for EACs may be challenging, but it has provided guidance on recruiting through a contractor and stated that it will provide additional technical assistance in the future. States should require MA organizations to use all available mechanisms to recruit EACs that represent diverse racial, ethnic, linguistic, and sexual identity/gender minorities. This could include partnering with social and community service organizations, network providers, agents and brokers, and health systems. When their EACs cannot achieve representativeness, MA organizations should be required to justify why or explain which groups they are still seeking. Finally, to advance equity, which is a stated goal of EACs, MA organizations should strive to achieve diversity by rotating positions on a regular basis (for example, every two years).

States Should Require MA Organizations’ EACs To Focus On The Primary Issues Of Concern For Dually Eligible Individuals

To realize true shared governance, EACs should be responsive to the issues that matter most to dually eligible members, rather than focusing only on the plan’s priorities. In 2021, we completed a study that used human-centered design principles to understand the needs and concerns of dually eligible individuals and identify opportunities for policy and program improvements. The most common issues raised by individuals we spoke to were:

• Access to high-quality providers who collaborated on the members’ care and understood their specific needs and preferences;
• Access to needed medications without administrative hurdles;
• Reliable transportation to get to appointments or pick up prescriptions;
• Availability of telehealth to facilitate access;
• Availability/accessibility of, and eligibility for, services and supports that address medical and nonmedical needs (such as medical equipment, in-home aides, patient navigators, and care coordinators); and
• Supports for understanding, navigating, and coordinating their benefits to receive integrated care.

Policy makers and plan administrators often think in terms of plan design or financing streams. However, our discussions with dually eligible individuals revealed that their main concerns are more on-the-ground, nuanced issues that require hands-on solutions. Individuals who reported that they had well-integrated care—which D-SNPs are supposed to provide—had access to providers and services that accounted for their logistical needs and aligned with their personal circumstances and values. Although many individuals found it hard to navigate and align their benefits, some could readily identify what they needed:

“[When picking a plan] I was most concerned about the doctors, but I also wanted to see about the ride shares … and how many they provide. And I wanted to see about how much they cover with my glasses. I wanted to speak about being provided meals when I have surgery. Because I had a few problems fixing my own meals because I stay alone, I wanted to see about that.”—Dually eligible individual from Georgia

For other individuals, the COVID-19 pandemic opened a new pathway to virtual care that worked well because it alleviated the logistical challenges of getting to their appointments and gave them more privacy, particularly for behavioral health appointments:

“Ever since COVID happened a lot of people have been doing virtual … so that’s really been really easy … I like it. It’s safer; appointments are quicker. It’s in the comfort of your own home, so I find it to be easier.”—Dually eligible individual from Ohio

MMPs’ experiences with consumer advisory committees (CACs) show that D-SNPs are likely to hear from their EACs many of the same issues that we found in our study. An analysis of CAC meeting agendas showed that benefits, care coordination, access to services, and quality improvement were some of the most common items discussed. These findings are perhaps not surprising, as issues of access, quality, and coordination have been persistent issues for dually eligible individuals and can be drivers of low enrollment in integrated plans. However, issues such as quality, access, and coordination are broad and include additional social, geographic, and market drivers that are not easily captured through typical sources such as patient experience surveys, clinical process measures such as cancer screenings or diabetes monitoring, or enrollment data. MA organizations should work with EAC members to understand how the plan’s benefits and providers could better align with their lived experiences.

Build In Accountability Through Person-Centered Measures That Evaluate Progress Over Time

Shared governance will require D-SNPs to be accountable for addressing issues that prevent members from receiving high-quality, equitable, integrated care. One way to create such accountability is to develop measures that center on members’ needs and concerns and track progress on these measures over time. For example, plans could work with their EACs to develop measures that track the accessibility and quality of transportation services or members’ experiences with home and community-based services. Co-designing these measures with the EAC will be critical for plans to measure what matters to their members, establish and sustain shared governance, and promote equitable improvement over time. This process will also help D-SNPs find meaningful ways for members and caregivers to decide together what topics to measure and how to measure them, who should get the results, and how to use the results.

The development of person-centered measures in collaboration with patients is increasingly favored by the research community, advocates, and oversight entities. For example, the Medicaid and CHIP Policy and Access Commission recently voted to recommend that CMS require states to develop access measures with the involvement of Medicaid members and other stakeholder groups. The Patient Centered Outcomes Research Institute has also successfully engaged with patients and caregivers in designing measures of quality of care for specific patient populations. The shared design of such measures distinguishes them from other standardized clinical indicators because they serve as markers of alignment between enrollees’ needs and a plan’s or provider’s performance.

Elevating The Voices Of Dually Eligible Individuals

CMS is requiring MA organizations to establish EACs in 2023, leaving a short window for recruiting and implementing these committees. States participating in the FAI will be able to leverage lessons from MMP committees; however, some states, especially those that have limited or no experience with D-SNPs, may need more time to establish robust EACs that meet the spirit of the final rule. CMS indicated that it will offer technical assistance for recruiting and running EACs but did not indicate when such assistance would be available.

MA organizations may choose to implement EACs based on what has worked in their other MA plans or Medicaid managed care. However, those experiences may not translate to the uniquely complex, and widely varying, needs of dually eligible individuals that enroll in D-SNPs. States are in a position to fill the gaps in CMS’s final rule by creating more specific requirements around how MA organizations implement EACs and ensure that they support shared governance and accountability and that they ultimately lead to improved care for enrollees. The considerations presented here are important principles to guide the implementation of EACs, but they are a starting point. MA organizations should commit to learning from, and improving, the functioning of EACs so that the voices of dually eligible individuals can be heard.

Authors’ Note

Hafner and Fish conducted a study on dually eligible individuals that was funded by Arnold Ventures, which sponsors this Forefront series.