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Registries in Hospice and Palliative Medicine

Clinical data registries (CDRs) have the potential to demonstrate value and drive measure development within the hospice and palliative medicine specialty, advance Maintenance of Certification and research endeavors, and promote national quality improvement.

Several federal programs are driving the need for physicians to utilize CDRs as a resource to meet certain guidelines and demonstrate effectiveness, but changes are coming to the registries landscape.

Developing the Palliative Care Quality Collaborative (PCQC)

With the support of a grant from the Gordon and Betty Moore Foundation, five organizations convened to develop a quality improvement organization (the Palliative Care Quality Collaborative) with a unified registry to capture both program and patient-level quality data, to improve the care of patients with serious illness, including those receiving palliative care.

The collaborative and new unified registry will advance opportunities for:

  • quality measurement, benchmarking, and practice improvement
  • learning health systems and co-creation of care
  • value-based purchasing and payment reform
  • accreditation and accountability


Phase 1: Methods included:

  • Value proposition and goal setting for a unified registry
  • SWOT analysis and individual registry assessments
  • Regulatory and environmental scan
  • Review of other medical specialty societies’ registries
  • Analysis of technical & financial feasibility of a unified palliative care registry
  • Business planning


Phase 2: Project entails the following broad activities:

  • Create and deploy a unified registry
  • Create a new independent organization
  • Define and implement operational activities of the new organization


The three Registry CORES will be:

  • Practice Improvement Core (led by PCQN)
  • Innovation, Research and Measure Development Core (led by GPCQA)
  • Program Standardization Core (led by CAPC)


The partners are currently working on phase 2 of this project to establish and house the unified registry under a new palliative care quality collaborative organization.

For detailed information, view the Going Further Together presentation from the Quality Matters Conference.

Registry Partners

Together, these partners will establish this new organization with unified registry, engage internal and external stakeholders, and seek additional funding to ensure the sustainability of this new organization. The five organizational partners are:


AAHPM is serving as the convener of this multi-year project, providing project oversight and management.

Partners recognize that the success of a unified registry project will help advance the field of palliative care, bridge gaps in knowledge, promote research and development, improve quality of care, support quality improvement projects, and better align with the new demands of accreditation and value-based payment models.

capc main logo                 NPCRC logo


GPCQA logo NEW


PCQN horizontal final copy

Why collect data in a registry?

There is a need for physicians to utilize Clinical Data Registries to meet certain guidelines and demonstrate effectiveness. Utilization of registries can:

  • improve patient care through rapid cycle quality improvement
  • design, test and implement quality measures that matter for seriously ill patients
  • assure the quality of palliative care services 
  • collect and report data on quality measures in value-based purchasing agreements with payers
  • create a learning health system for the seriously ill
  • ensure that data from different providers measures the same thing – using a standardized approach to increase confidence, consistency, reliability
  • empower palliative care service providers to demonstrate their value to health systems

Current State of Quality Registries

There are currently three quality registries:

  1. The National Palliative Care Registry™ - a joint project of the Center to Advance Palliative Care (CAPC) and the National Palliative Care Research Center (NPCRC). The Registry is free and does not include any patient-level data.
  2. The Global Palliative Care Quality Alliance - a national quality improvement, research, and measure development collaborative, which uses QDACT as the data collection platform for standardized, patient-level outcomes.
  3. The Palliative Care Quality Network - a national palliative care quality improvement collaborative that supports the growth and sustainability of PC teams and their clinicians. The PCQN database supports the collection of standardized structure, process, and patient-level outcome data.

Resources