Registry 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.
With grant support from the Gordon and Betty Moore Foundation and the Cambia Health 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.
Palliative Care Quality Collaborative (PCQC)
AAHPM served as the convener of this multi-year project, providing project oversight and management. AAHPM and partners worked to establish PCQC. Since the inception of the project, PCQC became a 501c3 organization, incorporated in Illinois, seated a Board of Directors, completed market research, hired an executive director, hired a vendor to build the registry, hired a management company, finalized the data dictionary, and launched the unified registry.
For detailed information, view the Going Further Together presentation from the Quality Matters Conference.
On May 20, 2020 AAHPM partnered with PCQC to host a webinar titled: Making Measurement Matter: How will your Organization Engage with the New Palliative Care Quality Collaborative? This webinar contained content that would have been shared at the 2020 Annual Assembly.
Together, these partners have established this new organization with unified registry, engaged internal and external stakeholders, and sought additional funding to ensure the sustainability of this new organization. The five organizational partners are:
- American Academy of Hospice and Palliative Medicine (AAHPM)
- Center to Advance Palliative Care (CAPC)
- National Palliative Care Research Center (NPCRC)
- Global Palliative Care Quality Alliance (GPCQA), and
- Palliative Care Quality Network (PCQN)
- Four Seasons
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.