PFEN Projects

Where the Person and Family Engagement Network and Measure Developer Contractors Are Working Together

“Having two patient and caregiver representatives serving on our Hospital Harm TEP has ensured the voice of the patient is considered throughout the measure lifecycle. In developing measures of patient safety, this is incredibly valuable in centering the measure development process around outcomes such as falls with major injury that are important to the patient.” – Project Director, Patient Safety Measures of Hospital Harm TEP, IMPAQ International, LLC, 2019  

The Person and Family Engagement Network (PFEN) supports Measure Developer Contractors (MDCs) by providing the patient and family perspective in Technical Expert Panels (TEPs), work groups, and focus groups during the quality measure development process. CMS measure developers find the patient and family perspective invaluable, as the members’ lived experiences complement the measure developers’ technical and content expertise. 

Rainmakers Strategic Solutions, LLC, manages PFEN, which includes recruitment, onboarding, and ongoing education and outreach. The Rainmakers’ team carefully matches PFEN members’ clinical and demographic backgrounds, skillsets, and interests to the measure developer’s project goals. Rainmakers continues to provide support to both the PFEN member and measure developer for the duration of the project to ensure all parties receive the support they need to be successful throughout the process. 

PFEN members have collaborated with measure developers on over 25 projects across diverse topics since 2019. Below are examples of key quality measure development projects that PFEN members have supported.

MACRA Episode-Based Cost Measures Work Groups 2021

Work Group Goal: CMS contracted with this measure developer to create episode-based cost measures for potential use in the Merit-Based Incentive Payment System to meet the requirements of the Medicare Access and CHIP Reauthorization Act (MACRA) of 2015. The measure developer will hold work groups with 20 persons and family members to provide input for developing major depressive disorder, low back pain, heart failure, and emergency department cost measures.

The measure developer will hold three work groups for each of the four cost measures during this project between June 2021-Spring 2022. Prior to each of the work groups, PFEN members participated in a one-on-one interview or focus group. PFEN members provide their input on measure development concepts such as costs that should be included in caring for patients with these conditions and aligning quality indicators with cost measures. They also participate in post work group feedback surveys.

PFEN Member Characteristics: PFEN members have lived experiences with major depressive disorder, low back pain, heart failure, and emergency department ailments as Medicare patients or caregivers for a Medicare beneficiary. 

Work Group Outcome and Impact: PFEN member feedback will help the measure developer plan additional testing for the cost measures. For example, during the first work group in June, Emergency Department work group members noted opportunities to improve emergency department care coordination and communication. They emphasized the importance of communication between the medical resident, attending clinicians, and primary care physicians. This often leads to discharge information not being shared with the patient’s primary physician and a breakdown in care coordination. PFEN members also noted gaps in communication during the emergency department visit regarding the care plan and requested services and tests, which made it difficult for the caregivers to understand the patient’s needs. Their comments and feedback were then implemented into the development plans of the measures in the next phase of the project that begins in 2022.

Back to top

Hospice Quality Reporting Program Hospice Care Index Measure TEP 2020

Work Group Goal: The measure developer convened a work group to support the Measure and Instrument Development & Support Hospice Quality Reporting Program Hospice Care Index (HCI) Measure.

The HCI assesses a broad and holistic set of hospice care processes not otherwise addressed by the quality reporting program process and outcome measures. Since multiple staff members provide a variety of care throughout the hospice stay, multiple indicators of the HCI are intended to reflect the care team’s range of efforts.

PFEN Member Characteristic: The Rainmakers team recruited PFEN members who were 1) caregivers with experience in pediatric hospice patients and 2) participants with personal hospice familiarity, mostly caregivers who experienced hospice or were in the process of trying to decide on hospice care.

Work Group Outcome and Impact: Members provided valuable feedback on potential measure indicators, including different aspects of the hospice stay which impact quality, such as delays in receiving care, gaps in skilled nursing visits, and hospital discharges. This feedback would then be incorporated into the development of a measure to demonstrate the differences in quality between hospice facilities.

Back to top

Patient Safety Measure Development and Maintenance Sepsis TEP 2020

TEP Goal: CMS sponsored the Patient Safety Measure Development and Maintenance measure as part of its goal to improve patient safety and reduce hospital-acquired conditions or injuries. This TEP was created specifically to provide expert and stakeholder input for developing and maintaining a sepsis outcome measure to use in CMS Quality Payment Programs.

TEP Member Characteristics: The TEP initially consisted of clinicians familiar with the terminology associated with the measure and condition of sepsis. PFEN members provided patient and caregiver-level feedback on the measure’s value which included insight to caregivers’ needs and experiences caring for an individual with sepsis who may be in intensive care for extended periods of time.

TEP Outcome and Impact: During the sessions, the TEP reviewed the measure from clinician and patient perspectives to conceptualize a method to measure harm in a meaningful way. The team gathered valuable feedback on the experience of patients who experienced sepsis and the treatments they received. Specifically, the TEP provided insights on whether the measure considered how to adequately capture and code for sepsis given the dynamic flux in diagnostic coding, CMS’ definitions of sepsis, how to handle specific exclusions and transferred patients, and overall achievement of the measure outcome.

Back to top

Measure & Instrument Development and Support Patient Safety Measure Development and Maintenance Hospital Harms TEP 2019

TEP Goal: The Maintenance of Hospital Harm eCQMs TEP guided key methodological and clinical decisions in the development of five hospital harms eCQM measures for endorsement by the National Quality Forum. The measures were Severe Hypoglycemia and Pressure Injury, Severe Hyperglycemia, Opioid-Related Adverse Events, Acute Kidney Injury, and Medication-Related Bleeding measures.

TEP Member Characteristics: The TEP included PFEN members who represented a variety of viewpoints and backgrounds that included experience with measures of hospital harm and expertise in performance measurement, quality and patient safety, patient perspectives, coding, and informatics.

TEP Outcome and Impact: The TEP provided feedback and recommendations to aid the Hospital Harm team refine the testing and development processes of the measures. Of note were the Medication-Related Bleeding and Opioid-Related Adverse Events (ORAE) measures. TEP members voted to include patients that reported any bleeding that occurs prior to major surgery as a harmful event for the Medication-Related Bleeding Measure. After discussions with TEP members, the Hospital Harm team decided to reevaluate its current value set for evaluating adverse events in patients given an opioid based medication and naloxone in the ORAE measure to expand its criteria for patient incidents included in the measure.

The TEP’s detailed feedback assisted the measure developer in developing Hospital Harm eCQMs. Their recommendations expanded the Medication-Related Bleeding and ORAE measures to include previously overlooked patient groups that would now be included in the measure’s future development. The TEP members provided additional feedback for the remaining three measures that contributed to adjustments in the methodology and other refinements. The Hospital Harm team will implement the TEP’s recommendations and conduct field testing of the updated measures.

Back to top

The Electronic Clinical Quality Measures Development and Maintenance for Eligible Clinicians (EC eCQM) TEP 2019

TEP Goal: The Electronic Clinical Quality Measures Development and Maintenance for Eligible Clinicians (EC eCQM) TEP identified, developed, specified, and tested new eCQMs for potential implementation in CMS Healthcare Quality Improvement programs that align with CMS’ quality strategy vision of making healthcare delivery better, smarter, and healthier. Another goal of this TEP was to prepare measures for consideration and potential endorsement by the National Quality Forum.

PFEN Member Characteristics: The TEP included PFEN members with lived experiences with accessing, caring, or advocating for someone who used health services in different settings. These settings were primarily ambulatory care settings where patients sought care for the treatment and management of chronic conditions, such as diabetes or cardiovascular conditions.

TEP Outcome and Impact: The EC eCQM TEP provided feedback on the validity and usability of the Preventative Care and Wellness (PCW) composite measure specification to include new component measures they would recommend and a revised PCW composite measure. The TEP also provided feedback on the importance, usability, and feasibility of the draft measure concepts. The TEP convened twice; the first time to review concepts related to promoting wellness and managing chronic disease, and the second time to review concepts related to cancer care and geriatric surgical outcomes.

PFEN members’ feedback was used by the EC eCQM team to prepare the measures for consideration and potential endorsement by the National Quality Forum.

Back to top

Bring the Person and Family Engagement Perspective to Your Project

Bringing the perspective of persons and families into your measure development project is valuable at all stages of the measure lifecycle, including measure maintenance.

This helps support CMS’ commitment to creating a healthcare system where persons and families are partners in designing, delivering, participating, and evaluating care.

Through the Person and Family Engagement (PFE) for Quality Measure Development MIDS contract, Rainmakers Strategic Solutions, LLC provides support to all MIDS Measure Development Contractors (MDCs) to incorporate the voice of persons and families. We assist measure developers with their PFE activities throughout the development and maintenance of their measures. We support MDCs with activities such as:

  • PFE Recruitment
  • PFE Strategic Planning
  • Coordination between PFE candidates/TEP members and MDCs
  • PFE TEP member orientation, education, and onboarding
  • Consultation on the PFE Toolkit: A Guide for Measure Developers

Rainmakers boasts subject matter experts, coordinators, patient advocates, and patient recruiters who work with the measure developer at each phase of the measure development process to ensure that the measure developers and PFEN members receive the needed support and resources to be successful.

Back to top

Want to learn more? Contact us!

If you are a measure developer and are interested in learning more about Rainmakers’ services, please contact us by completing the form below. If you are interested in joining PFEN as a person or family caregiver partner, please click here to learn more:

Projects Contact Form