Frequently Asked Questions (FAQs)
- Can my palliative care program participate in the National Palliative Care Registry™?
Your palliative care program can participate in the Registry if it has been operational for at least three months and provides non-hospice palliative care. Please see the Requirements tab for more detailed information about eligibility requirements.
- Is there a fee for participating in the Registry?
The National Palliative Care Registry™ is free and open to all palliative care programs.
- Do we have to be a member of the Center to Advance Palliative Care (CAPC) to participate in the National Palliative Care Registry™?
No. The Registry is open to all palliative care programs, whether or not their institutions are CAPC members. If your institution is a CAPC member, your login to CAPC Central is independent of the Registry login. You can choose the same login name and password for both, but you need to set up a separate login for the Registry.
- What kinds of data does the National Palliative Care Registry™ collect?
The Registry collects annual, aggregate data on the composition, operations and outcomes of palliative care programs by service setting. Data are collected by module and include: service setting metrics, patient demographics, patient visits, screening and referral, diagnosis categories, discharge disposition, length of stay, staffing and certification. The full list of survey questions is here.
- How do I check to see if my palliative care program is already registered with the National Palliative Care Registry™?
During the sign-up process, the system will check your email to see if you have previously registered. If it finds your email, you will be directed to reset your password. If it doesn’t find your email, you will be asked to identify your Administrative Home (this is your employer). If any palliative care programs associated with that Administrative Home are already in the Registry, you will get a list of programs and can add yourself to the program by selecting it. If your Administrative Home is not already in the Registry, or if your program isn’t listed, you can add your program.
- Can multiple people from my palliative care program sign up for the National Palliative Care Registry™ to enter and review data?
Yes. Once one person sets up your palliative care program’s profile in the Registry, each member of your team can create a personal account with their own login and password and join your program when they register. Users can also invite other team members to join by clicking to “Invite a Colleague” on the Registry dashboard. A full list of users associated with your program is available on the Program page of your dashboard.
- Can I register with more than one palliative care program?
If you are affiliated with more than one palliative care program, for example, an adult program and a pediatric program in the same hospital, and each program enters data independently into the National Palliative Care Registry™, you can join both programs. However, both programs must be administratively homed in the same facility for you to attach yourself. If you would like to join another palliative care program that has a different administrative home than the program you are currently in, for example if you’re a physician that works on a hospital team and a home health team, you can either contact someone on the other program and ask them to add you or you can contact the Registry and we will add you to the correct programs.
- My program provides palliative care services in several different settings (two hospitals, or a hospital, outpatient clinic, and patients’ homes, for example). Can we enter data for all these settings?
The National Palliative Care Registry™ is organized by palliative care program (single palliative care teams). When you register your palliative care program, you will be asked where your program provides palliative care services and you can select one or more care settings. Data collection is specific to the service setting, so if you have more than one service setting, you will be entering data for each separately. This includes programs that provide palliative care to multiple hospitals; each hospital will have its own survey. If you are part of multiple distinctive palliative care teams, you will need to register multiple palliative care programs. Please contact the Registry for assistance.
- What If I cannot answer a question?
While we encourage you to complete the full survey, you are free to skip questions. The National Palliative Care Registry™ surveys are organized into modules to make it easier for you to submit data on topics of interest to you and your program.
- What if I don’t have program data for a full year?
You can submit data for less than a full year and you will have access to program reports. However, your data will not be included in comparative analyses with other programs. Please make sure that you indicate you are submitting less than 1 year of data in Module 1 of the survey.
- Can I edit data previously submitted to the National Palliative Care Registry™?
Yes. You can make changes to your data at any time, both for current data and for past years. Your program’s reports will automatically update to reflect the changes you make.
- Is there a deadline for data submission for each year?
While there is no deadline for data submission and you can change your own data at any time, we do encourage programs to enter their annual program data before June of the following year. For example, for 2016 program data, we encourage you to enter your data by June 2017. For each data year, we will download the data entered to date and create an analytic file on June 30th, which we the use for research purposes. If you don’t submit your data by June, you will still have access to your program’s comparative reports. You can also enter data for any previous year.