Increasing Patient and Family Engagement by Giving Beneficiaries a Voice

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Creating stronger patient and family engagement (PFE) has long been a tenet of the Centers for Medicare & Medicaid Services (CMS) Quality Improvement Organization (QIO) Program. According to the Agency for Healthcare Research and Quality, when patients are engaged in their health care, there often are measurable improvements in both the safety and quality of care they receive. 

To advance patient and family engagement, Quality Innovation Network-QIOs (QIN-QIOs) were tasked in 2017 with developing Beneficiary Family Advisory Councils (BFACs) or other avenues for amplifying beneficiary voices.

BFACs are groups of Medicare beneficiaries, family members and caregivers who serve as advisors to QIN-QIOs and Beneficiary and Family Centered Care-QIOs (BFCC-QIOs), as well as the QIN National Coordinating Center and BFCC National Coordinating Center. They provide personal perspectives and experiences to help guide health care quality improvement and patient engagement efforts.

To better understand how QIN-QIOs throughout the nation were using BFACs, the organizations enlisted PFCCpartners, a private organization dedicated to improving the quality, safety and experience of health care through partnerships with patients and families, to do an environmental scan in January 2017 and another assessment in June 2018. While the 2017 scan focused on the QIN-QIO PFE landscape at-large, the 2018 reassessment charted the development and engagement that PFE leads made with the BFACs. 

PFCCpartners supported the QIN-QIOs through the Gateways to Patient Family Advisory Programs to develop advisory programs and partner with the QIN-QIOs in improvement work. PFCCpartners continues to support the practice of patient family engagement across the QIN-QIOs through an online community and monthly peer learning virtual meetings.

Results:

All QIN-QIOs interviewed for the scan said they engaged beneficiaries and families, and most employed BFACs as their main resource for giving beneficiaries a voice in the decision-making process. 

The scan also found that BFAC members played a key role in the success of PFE efforts, especially when they were integrated into the decision-making process. Additionally, the report highlighted a few examples of how QIN-QIOs partner with BFACs.

Keri McDermott, PFE lead in Nebraska for the Great Plains QIN-QIO—which serves Kansas, Nebraska, North Dakota and South Dakota — said she invites BFAC advisors to both have input in the planning of Learning and Action (LAN) events, but also to participate and share their stories with a larger audience.

Linda Penisten, a PFE lead in South Dakota for the Great Plains QIN-QIO, said she formed a relationship with a group of retired National Guardsmen through community outreach. She presents educational materials and other projects the council is working on to the group to garner feedback and a broader perspective from the beneficiaries in her state.

Another example of a successful BFAC partnership comes from atom Alliance, the QIN-QIO for Alabama, Indiana, Kentucky, Mississippi and Tennessee. The BFAC worked with individuals running local immunization awareness programs to get screen savers at Kentucky public libraries that promote the benefits of adult immunization.

Early results show that beneficiaries have been given a stronger voice through the creation of BFACs. 

QIN-QIOs did face some challenges in forming the BFACs, especially in recruitment of beneficiaries. Eight organizations shared that recruiting advisors who are diverse in both their experiences and culture has been difficult. Additionally, reaching out to rural populations has been an ongoing challenge.

Though PFCCpartners is still developing a way to quantify the success of these PFE programs, early results show that beneficiaries have been given a stronger voice through the creation of BFACs. Moreover, QIN- and BFCC-QIOs are eager to continue using the councils to better integrate patient voices and experiences in health care quality efforts.