Registries in Hospice and Palliative Medicine
Clinical data registries (CDRs) have the potential to demonstrate value and drive measure development within the HPM specialty, advance Maintenance of Certification and research endeavours, 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.
What is the Palliative Care Registries Collaborative?
The American Academy of Hospice and Palliative Medicine (AAHPM) is serving as the convener of the Palliative Care Registries Collaborative, where leaders from national organizations hosting three palliative care quality registries—the Center to Advance Palliative Care (CAPC)/National Palliative Care Research Center (NPCRC), the Global Palliative Care Quality Alliance (GPCQA), and the Palliative Care Quality Network (PCQN)—are working to develop a shared vision of how to use registries to improve quality in palliative care.
The Collaborative is seeking to unify and integrate data across the registries with the ultimate goal to support data-driven, high-quality, patient-centered care for those with serious illness. With funding from the Gordon and Betty Moore Foundation, the Collaborative is exploring the feasibility of creating a simple “no wrong door” access point to palliative care registries to advance the field. Learn more about this grant.
Why collect data in a registry?
- To improve patient care through rapid cycle quality improvement
- To design, test and implement quality measures that matter for seriously ill patients
- To assure the quality of palliative care services
- To collect and report data on quality measures in value-based purchasing agreements with payers
- To create a learning health system for the seriously ill
- To ensure that data from different providers measures the same thing – using a standardized approach to increase confidence, consistency, reliability
- To empower palliative care service providers to demonstrate their value to health systems
What can palliative care providers do now to enhance quality of care?
There are currently three quality registries— sponsored by the Center to Advance Palliative Care (CAPC)/National Palliative Care Research Center (NPCRC), the Global Palliative Care Quality Alliance (GPCQA), and the Palliative Care Quality Network (PCQN). To learn more or to participate, here are some options:
- 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.
- 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.
- 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.
- AMA STEPS Forward® module, “Quality Reporting and the importance of Qualified Clinical Data Registries (QCDRs) in maximizing your success”
- 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
- PCPI National Quality Registry Network (NQRN®)
- 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
- PCPI - Access recent PCPI webinars through the PCPI website. Please note: There is a fee for non-members to view past webinars. Members and staff of PCPI member organizations enjoy complimentary access. Below are a few suggested webinars.