As the project director for American Academy of Hospice and Palliative Medicine’s (AAHPM’s) Palliative Care Quality Measures Project, I am excited to share with you an update of our accomplishments as we have now completed our second year of this three-year project. I’m also announcing the biggest opportunity yet to give feedback on the two measures under development: the public comment period, which is February 1 – March 1, 2021!


For those not familiar with this project, under the Medicare Access and CHIP Reauthorization Act of 2015 (MACRA), the Centers for Medicare and Medicaid Services (CMS) was directed to develop performance measures for clinicians.

To meet these requirements, CMS awarded a cooperative agreement to AAHPM with the goal of developing two patient reported outcome performance measures (PRO-PMs) for palliative care in the areas of pain/symptom management and communication (Cooperative Agreement #1V1CMS331639-01-00). The project began in September 2018 and will be completed by September 2021.

AAHPM is partnering with the National Coalition for Hospice and Palliative Care (Coalition) and RAND Health (RAND) to establish the Palliative Care Quality Measures Project and develop patient-reported experience measures for CMS’s Quality Payment Program (QPP), including the Merit-Based Incentive Payment System (MIPS) and alternative payment models (APMs).

The project team is developing two measures to assess the quality of care provided by palliative care teams working in doctor’s offices and clinics that asks patients:

• How much they felt heard and understood, and
• How much they got the help they wanted for pain.


While there have been other important measure development contributions to improve the quality of care for patients living with serious illness, one of the unique aspects of this project is our commitment to a truly patient-centered approach to measure development.

Science doesn’t always go hand-in-hand with patient input, but this effort strives to value the lived experience of patients, caregivers and family members as much as the experts. Through the partnership and collaboration between AAHPM, Coalition, RAND and other key stakeholders such as the National Patient Advocate Foundation, our commitment together is to:

• Incorporate patient, caregiver and family input along with clinical and other stakeholder input and feedback throughout the measure development, testing, and implementation of the measures; and
• Shift from a focus on a clinical outcome in quality measurement to a patient-centered outcome that inherently incorporates personal preferences.

Our mantra is simply “for us, by us” meaning, we will create the measures with patient, caregiver, and family input along with essential input from clinical end users from the palliative care field throughout the measure development process.


By the end of year two of the project, with the guidance of our project advisors and our Technical Expert Clinical User Patient Panel (TECUPP), two specific draft measures are being tested in outpatient palliative care clinics and doctors’ offices:

• Palliative care outpatients’ experience of feeling heard and understood: The percentage of patients aged 18 years and older with at least 1 outpatient palliative care visit in 3 months, who complete a patient experience survey within 6 months of the outpatient palliative care visit and report feeling heard and understood by their palliative care provider and team.

• Palliative care outpatients’ experience of receiving desired help for pain: The percentage of patients aged 18 years and older with at least 1 outpatient palliative care visit in 3 months, who complete a patient experience survey within 6 months of the outpatient palliative care visit, who report having pain and wanting help for their pain, and who report getting the help they wanted for their pain by their palliative care provider and team.

The Information Gathering stage of the project (and report) has been completed, including:

• Literature scan
• Focus groups with palliative care providers
• Interviews with patients and caregivers
• Meetings with technical expert panels
• Cognitive testing with patients and caregivers

The National Beta Test is nearly complete which:

• Used a web-to-mail-to-phone survey design
• Sent surveys to over 8,800 adult patients receiving care from 43 outpatient palliative care programs across the U.S.
• As of mid-December 2020, over 3,700 surveys had been returned
• Is using data from these surveys to establish the reliability and validity of the two proposed measures and to finalize measure specifications

Feedback from the Test Sites:

“I love [the Heard and Understood] measure. I think it measures something that is essential to the service we provide.”


“That’s [feeling heard and understood] the first step to understanding their goals and desires, which is the next step to understanding what they want, which is the next step to completing their documents for final care.”


“The goal is to get patient pain under control. If we aren’t doing that, we aren’t doing our job at all. It is a solid thing to be assessing.”


“I think it’s critical we measure that [getting help for pain]. It’s part of what palliative medicine is.”


“It’s been fantastic to be a part of this, it’s a nice learning experience. Just being a part of this and the national movement is a real thing and we’re honored.”

The Coalition is responsible for our project’s stakeholder engagement deliverables because of its central position, leadership expertise, and longstanding relationships with key stakeholders in the palliative care field – including working collaboratively and consistently with leaders from national organizations representing physicians, physician assistants, nurses, social workers, palliative care programs, hospices, researchers, pharmacists, and chaplains (i.e., the core interdisciplinary team [IDT]).

Specifically, the Coalition, in collaboration with the AAHPM project team, was responsible for:

• Convening the Technical Expert Clinical User Patient Panel (TECUPP) and Measure Specification Panel (MSP), a subset of the TECUPP, to support the development and refinement of the proposed measure concepts.
• Soliciting participation from diverse care settings to ensure broad representation during interviews and the measure testing process.
• Providing opportunities for input and public comment at appropriate intervals throughout the project.
• Developing and disseminating a strategic communication plan and resources for sharing information on this project and the specific measures broadly.

Most importantly, our application for Year Three Funding from CMS to renew our Cooperative Agreement and continue this important work was successful!


• Attend a free webinar to learn about the project and measures: February 1, 2021, 2-3 pm, ET
• Give your feedback about the measures during a public comment period: February 1-March 1, 2021
Sign up to receive more information and project updates (by subscribing to a bimonthly e-newsletter)

For more information and specific questions, go to the project website and feel free to contact me at

Katherine Ast, MSW, LCSW
Director, Quality and Research
American Academy of Hospice and Palliative Care
@KatherineAst1 @AAHPM