How to Demonstrate Your Palliative Care Program's Value Through a Palliative Care Registry

If you ask a palliative care leader how to maintain a successful palliative care program, they will inevitably mention “stakeholder buy-in.” Even the most innovative ideas for care delivery cannot come to fruition or continue, without some level of support from organizational leadership. That said, if you present data which outlines your program’s operations and reach, especially when compared to peer programs around the country, this can often help “make the case” to your organization’s C-suite.

This comparative data comes from participation in a national palliative care registry, an online database where programs share information on their operations, and in return, receive reports which compare their program to their peers. Participation can enhance a program leader’s ability to tell a story about their program’s benefits for people living with serious illness.

In this blog post, we speak to Kristyn Fazzalaro, LCSW, manager of palliative care and oncology support services at Hoag Hospital. She shares the benefits of participating in a palliative care registry, including how registry data has contributed to her program's growth. Her responses have been edited for length, with her approval. As a disclosure, Kristyn is a member of the Palliative Care Quality Collaborative (PCQC) board.

Kristyn Fazzalaro (KF): Thank you for inviting me as a guest. Our palliative care program covers both the Newport Beach and Irvine campuses of Hoag Hospital, based in California. We provide inpatient palliative care consults in the hospital, as well as office visits on an outpatient basis. The team includes two physicians, a nurse practitioner, a clinical nurse specialist, three social workers (two licensed clinical social workers and one master of social work), and an administrative specialist.

KF: We have been collecting both patient and program data for over 10 years, and it has been very helpful in providing a solid foundation for our program’s growth. Data of interest to palliative care programs usually fall into one of three categories, which you can track on your own or in a registry:

• Basic Team Structure and Process (e.g. how many palliative care team members do we have and what are their disciplines?)
• Operations (e.g. how many initial palliative care consults did we complete in the last year?)
• Outcomes (e.g. how many of our patients were readmitted to the hospital within 30 days of their discharge?)

Collecting data has helped us in many ways, including establishing best practices for our program and conducting quality improvement (QI) projects. It allows us to easily identify and set goals for improvement.

KF: While our participation in both registries predates my leadership of the program, our organization understood the importance of being at the table to develop benchmarks. Leadership knew that participating was necessary to ensure the highest quality care for our patients, while also providing a way to capture and compare data to evaluate our own program.

By entering our data on completed consults and patient demographics, we could see similarities between our program and others like us; maybe because they were in a similarly sized hospital or because we were seeing a similar proportion of hospital admissions. In addition, the fact that we can view the data in comparison to similar organizations allows us to celebrate areas of excellence and report out to our hospital leaders with confidence.

KF: Absolutely! We have utilized both patient and program data to successfully “make the case” for staff and program growth. The patient data is about each patient and their course of care, while the program data is about our program’s operations over a one-year period. It is important to note that when patient-level data is collected for a registry, it is stored in a HIPAA-compliant database. Given that it includes private health information (PHI), a program can see its own data, but comparative reports are aggregate data only – there is no PHI revealed.

From a patient data perspective, we have been able to demonstrate program value by using the reports to show a reduction in length-of stay (LOS) when patients are referred for a palliative care consult within the first 24 hours of their hospitalization. This has provided us the opportunity to routinely meet with Emergency Department physicians and nurses for ongoing education and training on how to recognize patients who would be appropriate for a palliative consult. Having concrete data to share with the physicians helps them to clearly understand the benefits of early referral.

At the program level, we have successfully used registry data to “make the case” for more staff. It was very helpful to show leadership our program’s number of initial consults completed per full-time equivalent (FTE), compared to other national teams. In fact, this comparative data was invaluable. It is one thing to tell leadership that you feel overworked and exhausted; it is an entirely different thing to be able to share data that shows the amount of work your team is doing, compared to peers.

Another extremely helpful report for our team has been palliative care service penetration by hospital size (the percentage of hospital admissions with a completed palliative care consult). We often struggle with defining the “right size” for our program, and whether we are seeing an appropriate volume of patients in need. This report has helped us identify potential growth as compared to our peers and when combined with our patient data, helps us better align our staffing “asks” with hospital-wide initiatives, such as reducing mortality, readmissions, and LOS.

KF: The PCQC registry combines the three previous US-based palliative care registries in one place, including the National Palliative Care Registry™; Palliative Care Quality Network (PCQN); and the Global Palliative Care Quality Alliance (GPCQA). Participants will be able to add their program and patient data into the system and receive reports which compare them to similar palliative care programs.

Participating in the PCQC registry will bring even more power to the punch of data sharing! Being able to define your program’s data alongside (or in comparison to) a unified, national data registry will lend credibility to the data, and likely your program, as hospital leaders are typically striving for high-functioning programs that out perform their peers. Aligning the three large data registries brings visibility to palliative care and allows for a depth of data comparison not realized previously.

KF: Start now! Collect data however it works for you and your program. If that means talking to your IT department about pulling data from the Electronic Health Record (EHR), that is fantastic. If it means you use a spreadsheet and enter things manually, because that is all you have access to, that’s great too.

When you are ready for registry participation, whether you are a new program or an established program looking to grow, the power of comparative data cannot be underestimated. Being able to examine your patient data will allow you to make programmatic decisions based on evidence, rather than emotion. As palliative care clinicians, we often have a feel for what we believe is the “right thing to do"; however, sharing trended and comparative data will help get the buy-in of other service lines and hospital leadership.

For more information on how PCQC can support your palliative care program, click here.