The importance of quality measurement in health care is underscored by the management axiom, “you can’t improve what you can’t measure.” How to best measure the quality of care for patients with serious illness was the topic of a recent public workshop hosted by the National Academies of Sciences, Engineering and Medicine’s Roundtable on Quality of Care for People with Serious Illness.

The foundation’s Patient Care Program is supporting efforts to ensure that high-need patients – those with complex, chronic conditions and limited ability to perform everyday tasks such as dressing, bathing or walking – have access to care that meets their needs  in the locations they want it most: in the community and in their homes. Part of our efforts include supporting the National Academy of Medicine’s roundtable.

Through its public workshops, the roundtable hopes participants will learn from other stakeholders interested in a shared vision of high-quality, community-based care for people with serious illness. The roundtable’s latest workshop (the fourth in the series) explored the challenges and opportunities related to implementing quality measures for accountability purposes in community-based care for people with serious illness. A summary report was published in October.

Measurement, accountability and improvement

The workshop brought together stakeholders with a broad range of perspectives, including clinicians, health care payers, researchers, policy analysts, patient and family caregivers, experts in health care accreditation and representatives of federal agencies. The group examined the current state of quality measurement and explored approaches to enhance accountability and drive improvement.

In his introductory remarks, James Tulsky, chair of the department of psychosocial oncology and palliative care at the Dana-Farber Cancer Institute, said the workshop is part of a broader effort to create a national accountability and measurement system for serious illness care. Tulsky said that achieving a robust accountability system is not an easy thing to accomplish, adding that “it is important that we talk about and think deeply” about this topic.

The foundation has played a key role in this accountability and measurement work, including sponsorship of this specific National Academy of Medicine workshop. Since 2016, we have been focused on developing and promoting an accountability system that leverages two of the strongest motivators in health care – public reputation and financial incentives. This accountability system would mandate the public reporting of key quality measures by every community-based serious illness program and lay the groundwork to link financial rewards to that performance.

Taking it into the real world

How to implement this kind of accountability system in the real world was also a focus of the workshop. Amy Kelley, associate professor at the Icahn School of Medicine at Mount Sinai, underscored the need to look at implementing existing quality measures rather than developing new measures (a process that can take years). Kelley said the goal of the workshop was to build upon lessons learned and think about actionable next steps “rather than simply admiring the problem.”

In order to provide the real-world context for why it’s important to understand what matters most to patients and their families, the workshop featured an interview with a patient living with serious illness.

Gwen Darien, a three-time cancer survivor who is the executive vice president for patient advocacy at the National Patient Advocate Foundation, shared her good (and bad) experiences as a patient receiving care in an increasingly complex health care system. She said quality measures should reflect what is important to the patient and caregiver rather than what is important to the delivery system.

Past roundtable workshops included:

As we learn more about serious illness care, both through our work and the work of the National Academy of Medicine and others, we will continue to share insights from future roundtable-led workshops.


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