by: Beth Berselli

As we have previously shared, here at the foundation we have been investigating how best to provide high-quality care for “high-need” patients in the places they want to receive it: in the community and in their homes. High-need, or seriously ill, patients have serious chronic conditions such as diabetes, heart disease and chronic obstructive pulmonary disease, and they are also limited in their ability to perform everyday tasks such as eating, bathing and walking.

Over the last 18 months, a key strategy for our work has focused on building effective quality measurement and accountability programs for community-based services for people with serious illness. Currently, a strong consumer protection system does not exist for this kind of care. One such accountability system could include three components:

  • Performance measures for use in public reports that help people select high-quality health care providers;
  • Value-based payment programs that link payment to the quality of care, not just volume of services provided; and
  • Accreditation and/or certification programs that signal the presence of a high-quality, community-based program.

We partnered with the University of Washington Cambia Palliative Care Center of Excellence to convene 45 serious illness care experts to identify a path forward for building an accountability system for serious illness care programs in communities across the country. Participants were intentionally selected to represent a broad cross section of our health care system and included practicing palliative care physicians, patient advocates, academic researchers, quality and policy experts, government leaders and health plan representatives.

A report from the convening, “Quality Measurement and Accountability for Community-Based Serious Illness Care,” summarizes the key findings and recommendations. Highlights include:

  • Defining the serious illness population: The group reached consensus on a definition of the serious illness population: “Serious illness is a health condition that carries a high risk of mortality and either negatively impacts a person’s daily function or quality of life or excessively strains their caregivers.”
  • Identifying the measure “denominator”: Recommendations were made for determining a measure that indicates eligible individuals with serious illness who would benefit from enhanced services. It was suggested that the denominator be based on a combination of diagnosis and utilization, including use of home health, skilled nursing and/or durable medical equipment. At the same time, the experts recognized that some measures will only be applicable to a specific disease or subgroup, and recommended that narrower denominators be developed for such measures.
  • Guiding principles for measurement: The group agreed upon guiding principles that focus on promoting patient-centered care that reflects patient preference and experience of care; increasing care coordination across the care continuum; minimizing burden of patients, families and providers; and avoiding unintended consequences.
  • Preparing a starter set of quality measures: Convening participants identified a proposed starter set of serious illness quality measures that could be used by existing community-based serious illness programs. The 16 measures in the initial set include such things as: a survey of seriously ill patients and families about their care experiences; a caregiver assessment; a patient/family assessment of goal concordant care; and utilization metrics (e.g., avoidable emergency department visits). About half of the measures already exist and are ready for immediate use by providers and payers; some measures will need to be modified so they are appropriate for community-based serious illness care, and a handful of measures will need to be created.
  • Catalyzing ways to implement an accountability system: The group identified two potential future scenarios – a “co-creation” patient registry and an alternative payment model – that could further catalyze implementation of a wide-scale accountability system and quality measures for community-based serious illness care. See pages 20-22 of the report for details about these scenarios.
  • Conducting research and solidifying actions: Top priorities include developing a new survey to measure patient/family experiences of care in community-based serious illness programs; refining the denominator so it captures the “right” patient population; and piloting a co-creation learning system that incorporates the existing patient registries used by the field. Next steps and needed research are summarized in Appendix B (page 26) of the report.

Ten papers were presented and discussed at the convening, on topics ranging from how to support family caregivers to how to appropriately measure the patient-centeredness of care. All the papers will be published in a March 2018 Journal of Palliative Medicine special supplement; now available on the journal’s website.

A lot of progress was made during the convening, and we are eager to ensure that this forward momentum continues. To that end, we recently awarded a grant to the Center to Advance Palliative Care (CAPC) to launch and lead a new “Serious Illness Quality Alignment Hub.” The hub will oversee a national effort to identify, prioritize and monitor the most actionable and high-impact opportunities and activities that lead to a strong accountability system for community-based serious illness care. Specific stakeholders that the effort will seek to influence include:

  • Private employers (“purchasers”), which make decisions about the benefits to be included (or not included) in the health plans, provider networks and services offered to their employees.
  • Private health plans, which can offer incentives (i.e., financial bonuses and penalties) and establish requirements for their network providers (e.g., accreditation and/or certification programs).
  • The Centers for Medicare & Medicaid Services, which can impose specific requirements and incentives through Medicare’s conditions of participation, regulation, value-based purchasing programs and public reporting.
  • States, which oversee health plans, Medicaid and long-term care, and can spearhead targeted quality assurance initiatives.

As part of the hub, CAPC will collaborate with another foundation grantee, the National Quality Forum (NQF), to flesh out the measure starter set discussed at the May 2017 measures convening (and also described in the summary report). The National Quality Forum will lead a quality measurement workgroup, host a series of annual convenings, and create implementation tools to help providers understand and integrate quality measures into community-based serious illness care.

The Quality Alignment Hub will be co-led by Amy Kelley, associate professor at the Icahn School of Medicine at Mount Sinai, and Allison Silvers, CAPC vice president of payment and policy. We encourage anyone interested in community-based serious illness care to reach out to them at to learn more about the hub, including opportunities to participate.




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Quality Measurement and Accountability for Community-Based Serious Illness Care


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