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.
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.
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.
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.
Developing the Palliative Care Quality Collaborative (PCQC)
AAHPM served as the convener of this multi-year project, providing project oversight and management. AAHPM and partners have 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, and finalized the data dictionary.
PCQC is scheduled to open in early 2021. Check the PCQC website for updates.
Learn more about the PCQC and why you should join.
For detailed information, view the Going Further Together presentation from the Quality Matters Conference.
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
AAHPM is served as the convener of this multi-year project, providing project oversight and management.
Under PCQC, the National Palliative Care Registry, PCQN, and GPCQA will combine into one unified national registry system, offering the opportunity to capitalize on the best practices of each system, improve comparison reports, align with national standards, inform research and quality improvement, and explore electronic health record integration.
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.
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
- CMSS Primer for the Development and Maturation of Specialty Society Clinical Data Registries, 1st Edition, January 2016
- Registries for Evaluating Patient Outcomes: A User’s Guide, 3rd Edition
- Registry Business Case Tool – A business case template for those considering development of a clinical data registry. The template can help clearly identify a new or expanded registry program’s purpose, goals and objectives, as well as articulate the potential market opportunity for the registry.
- What is a Clinical Registry - Patient Edition – Information to share with patients about clinical registries and the importance of patient participation
- Participating in a Clinical Registry – Information about clinical registries for clinics, hospitals and health systems