Palliative Care Data Collaborative Aims to Improve Quality

Access to quantitative and benchmarked quality data are common expectations of palliative care providers, health systems, and payers. For more than a decade, three quality measurement registries have met that expectancy: the Global Palliative Care Quality Alliance, the National Palliative Care Registry™, and the Palliative Care Quality Network.

As the field has grown, however, the similar approaches and benefits offered by these registries frequently generated confusion among clinicians and did not leverage economies of scale and scope.

In recognition of the advantages a one-stop registry can offer, the Palliative Care Quality Collaborative was developed in 2019. The American Academy of Hospice and Palliative Medicine and four other national palliative care organizations created the PCQC, merging the best aspects of the three registries to serve as the leading voice for quality measurement, benchmarking, reporting, and improvement.


“Merging the best aspects of each palliative care registry, PCQC will be able to collect program-level data on structure and process, and patient-level data to drive quality improvement and reporting,” said Maggie Rogers, director of research at the Center to Advance Palliative Care (CAPC), one of PCQC’s founding organizations. “Improving the quality of care and quality of life for patients and families will always be the ultimate goal of palliative care as a field and of PCQC as an organization.”

The other participating organizations include the Global Palliative Care Quality Alliance, the National Palliative Care Research Center, and the Palliative Care Quality Network. The Gordon and Betty Moore Foundation provided principal funding, with additional support from the Cambia Health Foundation.

Established as a 501(3)c nonprofit organization last year and with a board of directors and executive director in place, the PCQC is expected to go live this summer.


PCQC will collect program-level data on structure and process, and patient-level data to drive quality improvement and reporting. It will seek to unify and integrate data across the registries with the ultimate goal of supporting clinicians and programs in providing data-driven, high-quality, patient-centered care for people living with serious illness and their families.

Joseph D. Rotella, M.D., chief medical officer at AAHPM, also touted the advantages the new registry will bring, confirming that uniting program-level and patient-level registries will create unprecedented opportunities to promote quality improvement, access, accountability, and research in palliative care.

“Health care in America is in the middle of a seismic shift from paying for volume to paying for value, and it has never been more important to demonstrate the quality part of the value equation,” he said. “The unified registry positions the palliative care field to thrive in new payment models and transform the care of people with serious illness to focus on what matters most to them.”

Arif H. Kamal, MD, associate professor of medicine/population health sciences at Duke Cancer Institute, pointed out that PCQC’s ultimate goal is to provide guidance, support, and infrastructure for palliative care practices, and for clinicians passionate about providing high-quality care to their patients and caregivers.

“Commonly, practices are looking for a community of others like them who are interested in asking questions like ‘are we doing a good job?’ and ‘how can we do better?,’ recognizing that such curiosity we use to understand patient concerns should translate into how we care for those patients,” Kamal told Hospice News.

Kamal further explained that the PCQC will measure its impact by the number of clinicians, practices, and organizations that join the collaborative, with a goal to have most of the field contributing data, sharing experiences, participating in education, or contributing insights in some way.

“As the field evolves and changes into new diseases, new domains, new care settings, and further upstream in care, understanding best practices in service delivery to further tailor our services to the patients who could benefit the most becomes more imperative,” Kamal said.

Palliative care is increasingly being held to the similar quality and outcomes scrutiny of other service lines. This understanding takes data, comparisons, and discussion, and the PCQC is expected to bring those three pieces together.

“Programs want to be able to see how they compare to their peers and develop targets and goals for their care delivery,” Rogers told Hospice News. “In order to develop accurate and robust benchmarks, we need as many programs to participate as possible. The more data that goes into the registry, the more data that can come out to improve the field of palliative care.”

Written by Robert A. Porché, Jr.

Companies featured in this article:

, , , , , ,