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Measuring What Matters: Opportunities for States

The meaningful engagement of people in their own care is a salient feature of quality health care. State policy makers have developed a range of strategies to build the patient voice into care and care planning. Such strategies include regulatory requirements for providers to engage in care planning, and value-based purchasing models that incentivize managed care plans and providers to ensure that people and their families are involved in key decisions regarding their care. These efforts often measure processes: the ways in which care plans are developed, the domains to be addressed within care plans, the execution of advance care planning documents. While this work is critical to promoting more person-driven care, states need more tools to help them determine if these person-centered practices are actually working to help people improve their overall functioning and achieve their goals. This is a particularly pointed need for systems that serve people with serious or complex illness, where the default treatment plan can often mean receiving more — often unwanted — care that may contradict a person’s wishes and diminish their quality of life.

Measures that Matter

“Person-driven outcomes” are personalized, structured, measurable goals identified by a person with complex health status or caregiver and can be used for both care planning and quality measurement.

Measuring What Matters Most to Older Adults, www.ncqa.org

National Committee for Quality Assurance (NCQA), in partnership with the SCAN Foundation and The John A. Hartford Foundation, has been developing and testing new measures that enable health care providers, working closely with patients, to document and track progress on person-driven outcomes (PDO). The PDO measures are designed to help clinicians and patients identify what matters, document individual goals, and work toward them. Outcomes can be tracked by goal attainment scaling (the patient and clinician identify a goal and create a scale of quantifiable outcomes for that goal) or through identifying a standardized patient-reported outcome measure (PROM) instrument (such as a PHQ-9) that reflects the symptom or domain associated with an individual’s goal. The PDO measure can be reported out at the system, population, or plan level.

State Policy Opportunities

States are keenly interested in supporting person-driven care for people with serious or complex health status and have a range of policy levers to do so. NASHP research indicates that the following areas of policy may offer states particular opportunities to support the adoption of PDO measures and better track the “person-centeredness” of the care received by people with serious or complex care needs:

  • Home and Community Based Services (HCBS): HCBS, primarily authorized through Medicaid 1915(c) waivers, provide a range of services and supports to people with nursing-home level care needs, so they can remain at home and in less-restrictive care settings. Person-driven planning is a federal requirement for 1915(c) waivers and identifying person-driven goals is a hallmark of many state HCBS systems. In Arizona, for instance, the state Medicaid manual defines how providers can support person-driven care, including how case managers and other providers can identify short- and long-term measurable goals. Similarly, Kansas has created a Participant Interest Inventory to more concretely identify strengths, goals, and personal preferences for people with disabilities. While states differ in how they describe and support person-centered planning across their HCBS systems, the ability to measure progress on person-centered goals is a challenge. The PDO measures could be a valuable tool for these systems. Looking forward, many states already require their Medicaid managed long-term services and support (LTSS) plans to have NCQA LTSS accreditation. NCQA is considering including the PDO measures within those accreditation standards in the future.
  • Dual Eligible Special Needs Plans: Dual Eligible Special Needs plans (D-SNPs) offer varying levels of coordination and integration for dual eligible beneficiaries, who are often among the most high-need and high-cost Medicaid beneficiaries. D-SNPs are required to have a contract with the state Medicaid program in order to offer D-SNP plans to residents, providing another policy vehicle for states to promote person-driven care for people with serious and complex care needs. At least one state is currently exploring use of the PDO measures within its upcoming D-SNP Request for Proposals (RFP).
  • Behavioral Health: Person-driven planning has been a critical value in state behavioral health systems, especially those systems that address the needs of people with serious mental illness. Health homes, Certified Community Behavioral Health Clinics, targeted case management services and similar Medicaid care models may offer additional opportunities to build in the PDO measures as a way to better quantify how service planning is meeting the expressed needs of people served by these services.
  • Patient-Centered Medical Homes (PCMH)/Enhanced Primary Care: Over the past decade, states have invested significant resources to improve and enhance primary care — often tied to value-based payment incentives. States may implement these models as accredited PCMH practices through NCQA, adopt state-specific criteria, or a combination of both. Regardless, meaningful engagement of patients is at the core of these models, and another place where states may want to adopt tools that can track and measure the effectiveness of person-driven care and care planning.

The PDO measures are still in the early stages of adoption, and work remains to align provider processes and data systems to support implementation of these measures. Meanwhile, this may be an optimal time for states to invest in measuring person-driven care. As states across the country use American Rescue Plan Act (ARPA) funds to bolster LTSS infrastructure, including data systems, the number of people living with chronic illness continues to increase, the COVID pandemic has not disappeared and the health care needs of underserved communities still need to be addressed.  All these factors speak to the ongoing importance — and challenge — of measuring what matters.

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