Palliative Care Program Inventory FAQs

By contributing your program’s information, you’ll help to: 1) develop a national inventory of specialty palliative care programs, 2) advance the field’s understanding of palliative care delivery across settings, 3) strengthen advocacy for equitable access to palliative care, and 4) create national comparison reports of program structure and other insights that benefit the field.

Participation is free and open to all specialty palliative care programs. You do not have to be a CAPC member to participate.

Any specialty palliative care program operating in the United States is welcome to participate. You will, however, need to have a capc.org account to log into the system. If your organization is not a CAPC member, you can create a free account. One person from each palliative care program will need to own the Inventory listing and can make edits at any time.

The Palliative Care Program Inventory is a new initiative and is separate from the National Palliative Care Registry™ and PCQC. Informed by feedback about the time commitment required to participate in previous data collection efforts, the Inventory includes a short set of questions focused on specialty palliative care program operations.

Each program’s Inventory information is connected to a single capc.org user account. That person serves as the point of contact for the program and can update or edit the information at any time.

If your program previously participated in PCQC, you’ll see a “Search for Your Program” step during sign-up to check whether your program’s basic information was transferred to CAPC when PCQC closed. If you don’t find your program, you can simply add it on the next page.

The Inventory collects information on palliative care program operations, including program characteristics, staffing, patient encounters, and patient demographics. It does not collect any patient-level data or PHI. The Inventory is currently collecting information from the calendar year 2025. All program operations questions are listed in a worksheet that you can use to collect your data.

Inventory questions are asked at the setting-level: a set of questions for patient’s home, office/clinic, and long-term care. For the inpatient (hospital) setting, questions are asked at the individual hospital level. For example, if you provide palliative care services at three hospitals, you will be asked the inpatient questions three times.

That’s okay! The only required questions are those completed during sign-up: your program’s contact information, the organization that operates your program, and where you provide specialty palliative care. All questions about program operations (e.g., staffing, patient encounters) are optional. You can also save your progress at any time and return later to answer additional questions or update your information.

Palliative care programs operate in many different ways, so there is flexibility in how you define your program in the Inventory. However, we recommend setting up your program based on how you would like it to appear in the Palliative Care Provider Directory (if you choose to have your program listed there). For example, if patients and families use one central phone number to schedule an appointment, regardless of care setting, we recommend adding it to the Inventory as one program with several different care settings. However, if patients and families use different phone numbers for different services (e.g., one for inpatient services and one for in-home services), we recommend adding them as separate programs.

For additional guidance, see the Definition of a Program document.

You can add or edit your program's information at any time. The additional questions on program operations are collected on an annual basis, starting with 2025 data collection.

You can login to your capc.org account and update your program's information at any time. You can access your Program Dashboard by clicking the person icon in the upper right corner of the website or going directly to capc.org/accounts.

Yes, as long as you hit "Save" on the bottom of your current page, anything you enter will be retained within the system.

Only CAPC staff will have access to all program data entered into the Program Inventory. Data will be used, in the aggregate, to create national reports highlighting the current state of specialty palliative care in the U.S. State organizations, such as state palliative care organizations, may occasionally request access to the list of programs operating in their local area; however, detailed program information and personal contact information, such as email addresses, will not be shared. View CAPC’s Privacy Policy.

When you participate in the Program Inventory, you also have the option to list your program in CAPC’s Palliative Care Provider Directory on GetPalliativeCare.org.

The Palliative Care Provider Directory is a public resource, available on GetPalliativeCare.org, that patients, caregivers, and referring providers can use to find specialty palliative care programs in their area. To be included in the Provider Directory, a program must be submitted to the Palliative Care Program Inventory and opt-in to be listed.

Great! If you added your program in the last few years, your program's basic information has already been transferred to the Program Inventory. However, we would appreciate it if you could log-in to the system and answer the new program operations questions as well.

Join an upcoming Using the Palliative Care Program Inventory Virtual Office Hour with Rachael Heitner, MPH, CAPC’s Director of Research and Insights. Get real-time guidance on what information to submit, how to navigate the Inventory, and questions that come up along the way.

You can also contact us at any time with questions by completing this form and selecting the Palliative Care Program Inventory from the topic drop-down menu.