Frequently Asked Questions

  1. What is the Palliative Care Quality Collaborative?

    The Palliative Care Quality Collaborative (PCQC) is a 501c3 palliative care organization, formed to create a unified palliative care registry, combining the Global Palliative Care Quality Alliance, the National Palliative Care Registry™, and the Palliative Care Quality Network. Merging the best aspects of each palliative care registry, PCQC collects Annual Program Surveys on structure and process and clinical data to drive quality improvement and reporting.

    The goal of PCQC is to improve the care and well-being of people with serious illness and their caregivers by delivering timely and useful patient- and program-centered data that identifies and promotes best practices through quality improvement, research and a supportive community of practice and supports accreditation, accountability, and benchmarking.

    PCQC was formed through a collaboration of six national palliative care organizations: American Academy of Hospice and Palliative Medicine (AAHPM), Center to Advance Palliative Care (CAPC), Global Palliative Care Quality Alliance (GPCQA), National Palliative Care Research Center (NPCRC), and Palliative Care Quality Network (PCQN), and Four Seasons. The Gordon and Betty Moore Foundation have provided principal funding for PCQC, with additional support from the Cambia Health Foundation.

  2. Why should my palliative care organization join a larger registry and quality collaboration?

    Standardized collection of structure, process, and clinical data outcomes allows for national benchmarking and identification of best practices that is not possible for any program on its own. By combining the experience and expertise of the former registry organizations, PCQC increases the collective sample size for benchmarking and research and enables the palliative care field to drive quality initiatives. Creating this national organization provides an opportunity to improve upon the former registries to make data collection, analysis, reporting, benchmarking, and quality improvement (QI) simpler and more streamlined.

  3. Why should we contribute both structure & process and clinical data? What is the benefit of collecting both?

    Structure data help determine staffing ratios and workload and help ensure that programs align with national guidelines. Process measures, such as whether a program uses standardized screening criteria (triggers) to identify a patient with palliative care needs, influence the quality of care delivery; positive patient-level outcomes are the gold standard, and process measures help you reach them. By collecting all levels of data, you can understand how process characteristics, such as staffing and workload, relate to the care you provide and the patient outcomes you achieve. Linking structure, process, and outcomes enables our field to define best practices.

  4. What is the organization's dataset? Is it different from what current participants utilize?

    Clinical Data Capture and Reports (Premium Membership) will be familiar to former PCQN and GPCQA members. Annual Program Surveys and Reports (Advanced Membership) and completing a Program Profile (Basic Membership) will be familiar to former National Palliative Care Registry™ participants. PCQC leadership sees this as an opportunity to add or edit data elements that benefit the field and provide a consensus on important metrics for program measurement.

  5. If I am already a member of an existing registry, what will happen to historical data in GPCQA/ PCQN or the National Palliative Care Registry? 

    Per your legal agreements with GPCQA/ PCQN, each program owns its own data. Therefore, all GPCQA/PCQN members are able to download and internally store their historical data at any time. When transitioning to the PCQC registry, each program can decide if they want to send their historical data to PCQC. GPCQA/PCQN are working with PCQC to make certain that they return the data to participating programs in the correct file format. GPCQA/PCQN cannot send your data directly to PCQC due to legal restrictions. If your program chooses to send its historical data to PCQC, it will be available in the PCQC Registry.

    The National Palliative Care Registry™ sent your historical data to PCQC. You are able to access your historical data and longitudinal reports through the PCQC Registry.  

    The data from your Program Profile continues to populate getpalliativecare.org and transfers into the PCQC registry as well. We ask that you review that data for accuracy on a regular basis.

  6. What other learning, networking, or collaboration opportunities exist?

    As part of Premium Membership (Clinical Data Capture), PCQC provides valuable educational and networking opportunities. These activities currently include webinars and training and will include QI collaboratives in 2022.

  7. Does PCQC have the capacity to integrate with electronic health records?

    Yes, we are working with our registry vendor to create the capability for PCQC to integrate with EHR systems. The specific EHR systems and process for integration will vary depending on your EHR vendor. PCQC will work with you to identify the best options for your program. Manual data entry continues for all those that wish to do so.

  8. Is there a fee associated with becoming a PCQC member?

    Participation in Annual Program Level Surveys and Reports (structures and processes) that was offered by the National Palliative Care Registry™ at no cost remains free for all palliative care organizations. Participation in Clinical Data Capture and Reports and the quality collaborative is associated with a fee, as GPCQA and PCQN were. The standard fee is $6,000 per program per year. Discounts apply for bulk purchases and pediatric and safety net programs. Those who register by December 31, 2021, will receive an early-member discount of 25% off standard membership for their first 2 years. If you are curious about the specific cost for your program, reach out directly to PCQC at This email address is being protected from spambots. You need JavaScript enabled to view it. for a price quote.

  9. What support do registry participants receive during the organizational transition?

    The National Palliative Care Registry™, GPCQA, and PCQN are committed to making their former members’ transition to the new organization as seamless as possible. The staff of each registry are available to answer member questions and maintain a high level of support during the transition period.

  10. I Love it! When can I join?

    PCQC launched in early 2021. You can start reviewing and completing necessary paperwork now.  Since PCQC is a new organization, all current GPCQA/PCQN members will need to complete new legal agreements. For more information, reach out to This email address is being protected from spambots. You need JavaScript enabled to view it. and review our website, www.palliativequality.org.

Are you a current registry participant with questions? Contact:

PCQC Partner Organizations:

capc
global
aahpm
pcqn
npcrc

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