The pandemic’s disproportionate toll on people who are dually eligible for Medicaid and Medicare has amplified the urgency for the academic and policy community to turbocharge the research and data-gathering necessary to improve care for people with complex care needs.
Long before the pandemic, dual-eligible individuals faced higher-than-average care needs and the challenge of navigating two separate programs to access care. Yet despite the disproportionately high spending on care — and the poor outcomes often experienced by dual-eligible individuals — serious limitations in the available data have hampered efforts to identify evidence-based policy solutions.
However, COVID-19, which has affected dual-eligible beneficiaries more than almost any other group of Medicare beneficiaries, has laid bare the essential need for more — and higher quality — research and evidence examining the challenges faced by dual-eligible individuals, the barriers to integrating care, and the incentives and disincentives shaping the care landscape.
“We’ve made significant strides to improve care for the dual-eligible population, most notably increasing services that allow people to remain in their homes and communities, but the tragedy of the past year has shown us just how far we still have to go,” said Arielle Mir, vice president of complex care at Arnold Ventures. “It’s imperative that we invest in the research now so that we can quickly, and effectively, spur momentum to improve care for those who need it most at a time when the needs are critical.”
In mid-January, hundreds of researchers convened to discuss how to bolster the quantity and quality of research around dual-eligible individuals and home-and community-based services. Hosted by the Administration for Community Living, the Centers for Medicare & Medicaid Services, and Arnold Ventures, “Building the Research Pipeline: Home and Community-Based Services and the Dual-Eligible Population” ignited a conversation about the field of existing research and opportunities for growth and expansion.
As investigators explore ideas, they should keep in mind the value of policy-relevant research and how it can help shape decision-making at a macro level. In her presentation, Melanie Bella, Chair of the Medicaid and CHIP Payment and Access Commission (MACPAC), a non-partisan advisory body to Congress, said that policymakers are especially interested in examining the effects of integration on outcomes, demographics, and eligibility; and learning more about the elements within care models or interventions that affect outcomes.
Because the dual-eligible population is heterogeneous, outcomes research must extend to the subpopulation as well because broad sweeping generalizations can overlook the distinct needs of certain groups of people, Bella said. Among the dual-eligible population, care needs and preferences vary widely, depending on age, conditions, physical and cognitive function, caregiver availability, and social supports.
This research, however, needs to be constructed in such a way that hears and listens to consumer voices, said another presenter, Emily Stewart, executive director of Community Catalyst, a nonprofit health care advocacy organization, and Arnold Ventures grantee.
To reach dual-eligible individuals and better represent their perspectives, Community Catalyst has partnered with community-based organizations and task forces, established consumer panels and advisory boards, and conducted focus groups. These strategies should be deployed more broadly among researchers aiming to study this population.
Many researchers have blamed the slow evidence generation on the lack of data, but the time on that excuse is running out. There are data sets coming online — most notably the Medicaid claims and encounter data — that will facilitate more holistic studies of dual-eligible individuals inclusive of their Medicare and Medicaid experience including their utilization of long-term services and supports. Researchers should learn about the limitations of these data sets —including some lingering data quality issues — but shouldn’t hesitate to access them, said Dr. Timothy Waidmann, a senior fellow at the Urban Institute.
One of the most significant drivers of spending among the dual-eligible population — long-term services and supports — can be found in the newly released Medicaid data set. The U.S. long-term care system remains heavily biased toward institutionalization, instead of enabling individuals to receive care at home and in their communities. In her remarks, Anne Tumlinson, CEO of Anne Tumlinson Innovations, highlighted that the pandemic has stoked policymaker interest in shifting long-term care away from nursing homes — and that this interest represents an opportunity for real system change.
To be ready for this shift, policymakers need research to help guide their decision-making, and researchers must be prepared to bridge the knowledge gaps and move quickly to seize opportunities as they arrive.
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