Elevating Patient and Caregiver Voices

Two new patient reported experience measures are available for palliative care and other healthcare clinicians to implement in their practice.

Specifically, the measures assess the quality of care provided by asking:


How much patients felt heard and understood



If patients got the help they wanted for their pain


Learn about the Measures from National Palliative Care Leaders

Person-Centered Approach

What are Patient Reported Experience Measures

The two measures fall under the category of “patient reported outcome performance measures” or “PRO-PMs” and are intended for palliative care clinicians to evaluate the quality of care they deliver based upon patient reported experience.

Why Use These Measures

  • These measures can help you gauge that your program is truly providing patient-centered care. The measures apply a person-centered approach that recognizes the person beyond the disease and prioritizes peoples’ health concerns as they see them.

  • These measures can help you identify resources such as training or protocols you might need to provide high- value excellent patient care. The measures are in alignment with the top needs people want from their clinicians.
  • These measures can ensure you are addressing the most significant gaps in care today – patient centered, effective symptom care and communication. (See Clinical Practice Guidelines for Quality Palliative Care, 4th edition)

Are the Measures Endorsed by NQF

The measures have been endorsed by the National Quality Forum (NQF) during the fall 2021 review cycle.

How to Use These Measures

Clinicians can use these measures NOW to:

  •  Assess how well patients’ needs are being met
  • Implement as part of a larger quality improvement (QI) effort to understand patient experience
  • Identify and advocate for resources critical to improving patient care and experience
  • Reward and encourage those who are providing high-quality care
  • Provide support for improving care processes
  • Guide education to effectively manage all types of pain and conduct meaningful conversations with patients
  • Provide education to patients about pain management to properly set expectations
  • Conduct research with patients to examine external factors that affect their experience of care



Use the Implementation Guide to:

  • Generate ideas for how to overcome lack of internal resources (e.g., time, budget) and make the case for senior leadership
  • Navigate infrastructure and processes, specifically, how to begin a new PRO-PM program and how to successfully adjust an existing one
  • Set expectations regarding the types of capabilities that will be required (i.e., staff, processes, etc.)
  • Ensure consistent implementation with step-by-step instructions, simplified checklists, and timelines
  • Apply the measures for quality improvement efforts
  • Establish data from the measures to help both internal and external customers see the value of palliative care

“Elevating voices of patients and caregivers has been prioritized in every aspect of this initiative. NPAF applauds the inclusive and innovative approach of this remarkable partnership.”

Rebecca Kirch, JD
Executive Vice President, Policy and Programs,
National Patient Advocate Foundation (NPAF)

Who Led the Project

  • What is MACRA? – The Medicare Access and CHIP Reauthorization Act of 2015 (MACRA) is a bipartisan legislation signed into law on April 16, 2015.
  • CMS Announcement – CMS Awards Funding for Quality Measure Development: Agency funds new partnerships to develop meaningful measures for the Medicare Quality Payment Program.
  • AAHPM Press Release – CMS Awards $5.5 Million to Develop Measures for Community-Based Palliative Care.

How the Measures were Developed

This project followed a rigorous development process guided by the Centers for Medicare & Medicaid Services Measures Management System (CMS MMS) and the National Quality Forum (NQF) requirements.



The project team worked closely with an advisory group, called the Technical Expert Clinical User Patient Panel (TECUPP), who provided input on the development of the measures. The TECUPP members were doctors, nurses, social workers, chaplains, pharmacists, patients, caregivers, family members, and others who represented 17 national organizations.

See the TECUPP Announcement, Roster, and Charter.
Read the TECUPP Meeting Summary Reports: April 2019, October 2019, and June 2020.


Before testing began, the following information was gathered and reviewed by the project team:

  • National Consensus Project’s Clinical Practice Guidelines for Quality Palliative Care, 4th edition, and the evidence base on palliative care,
  • Current and relevant regulations,
  • Existing measures of patient and caregiver experience,
  • Findings from a gap analysis on palliative care quality measures, and
  • Findings from clinician focus groups and interviews with patients and caregivers or family members.

See the Report on Information Gathering Activities.


Alpha field testing was completed to better understand capabilities of fielding a patient survey and to prepare for the national field test (beta) with 300 patients and five outpatient palliative care programs. Beta field testing was conducted using a web-to-mail-to-phone survey design. A survey was sent to 8,800 adult patients receiving care at over 43 outpatient palliative care programs across the U.S and 3,850 completed surveys were received (40% response rate). Data from both surveys was used to establish the reliability and validity of the two measures and to finalize measure specifications.

See the Beta Survey Instrument (Heard and Understood Measure), Beta Survey Instrument (Help Wanted for Pain Measure), Measure Information Form (Heard and Understood Measure), and Measure Information Form (Help Wanted for Pain Measure).


A Public Comment period was held February 1 – March 2, 2021, and feedback was received through an online survey from over 200 stakeholders (i.e., patients, caregivers, patient advocates, clinicians and other health care professionals) on the importance of implementing the two proposed patient-reported experience measures. Results showed that clinicians were likely to use both measures – 83% stated they were very or somewhat likely to use the ‘Feeling Heard & Understood’ and 72% stated they were very or somewhat likely to use the ‘Receiving Desired Help for Pain’ measure.

See the CMS Public Comment Overview and Public Comment Summary Report.

Who Funded the Project

This project was funded was through a cooperative agreement between the Centers for Medicare and Medicaid Services (CMS) and American Academy of Hospice and Palliative Medicine (AAHPM) from September 2018 to September 2021. The cooperative agreement number is 1V1CMS331639-03-00.


The project was supported by the Centers for Medicare and Medicaid services (CMS) and the U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $5.5 million dollars over three years with 100 percent funded by CMS/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement by, CMS/HHS, or the U.S. Government.


For more information, please contact:
Katherine Ast, MSW, LCSW
Director of Quality and Research
American Academy of Hospice and Palliative Medicine



The American Academy of Hospice and Palliative Medicine (AAHPM), the National Coalition for Hospice and Palliative Care (the Coalition) and RAND Corporation doesn’t exclude, or otherwise discriminate against any person on the basis of race, color, national origin, disability, sex, or age in admission to, participation in, or receipt of the services under our quality measures development project funded by the Center for Medicaid and Medicare Services (CMS).

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