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A Playbook for Building Action-Oriented Patient Family Advisory Councils (PFAC)

Updated: Jun 20

Business meeting around a table

Part One – Member Selection and Retention

There are many opinions on what the mission of a PFAC should be. There are as many more opinions about whether they are a formality or a real source of innovation and change.

As a healthcare writer and professor, and the patient Co-Chair of a Patient Family Advisory Council, I offer the following Playbook for those just starting the process of launching a PFAC and for those looking to enhance their existing advisory group.

In Part One of the Playbook series we will focus on Member Selection.

Ethnic and Generational Diversity

Unarguably one of the most challenging issues from the onset is the recruitment and retention of a diverse group of patients and family members. Diversity can be defined in a number of ways. The first is obvious: the inclusion of a cross-section of ethnic groups and sexual orientations. However equally important is the inclusion of a variety of emotional perspectives about the hospital stay.

One of the major challenges I hear all the time is that the Patient Family Advisory Councils are composed largely of older white people who have more free time to attend the meetings whether live or virtual.

Needless to say, this creates a huge gap in the insights derived given that many of the major patient and family experience challenges are directly related to communications challenges during the stay. In other cases I’ve heard of challenges with dietary options related to certain ethnicities.

Another aspect of diversity is that it is critical to keep in mind the “F” in PFAC. In many cases, the family has the patient experience. I was in a coma for 45 days as a result of COVID and my family had all the experiences, good and bad, during that time.

Adding to the challenge is that the families must represent the same cultural and preference diversities as the patients. This means having members that may not have the best command of English, but that represent HUGE segments of the healthcare experience.

Technology & Member Diversity

The fact that with many lingering distancing requirements, virtual meetings have become a major aspect of PFACs. In an already challenging recruitment environment, there is a need to recruit members who have reliable connectivity and the ability to negotiate virtual conferencing platform interfaces like Zoom. Yes, these platforms are becoming mainstream but pairing WiFi access and generational usage issues makes including the most important healthcare constituents very challenging.

Many PFACs find that they may need to provide technical or (moral) support for those with technological limitations. We’ve all been on hundreds of calls where participants are saying “You’re breaking in” or “You’re on mute”.

This reinforces the need for onboarding new members in an already hectic workload situation.

Recruiting in the Moment

Not unlike patient satisfaction surveys success in recruiting PFAC contributors can be highly dependent on experiences they had at various stages of their hospitalization or outpatient care. Unfortunately, many of these surveys and PFAC recruitment efforts occur after discharge. History tells me that memory fades related to experiences that could be highly meaningful in quality improvements and innovation.

Although challenging from a logistics perspective, every effort should be made to find patients and families who have experiences at various stages or moments of the delivery of care as opposed to just the post-discharge reflections.

I personally experienced this when my provider knew I had experiences at every stage of my care, but “recruited” me well before I was discharged. Sometimes the patient is a squeaky wheel during their stay which might typically eliminate them from PFAC consideration after discharge. But to assure diversity of insight, the complainers are at times more important than the evangelists.

New voice-enabled patient engagement technology may be the game-changer in PFAC recruitment. As many hospitals deploy patient-facing interactive displays in rooms, the ability to capture incredibly valuable insights at the moment they are happening will increase. These systems integrate with the old-fashioned call bell to log the precise issue patients have, as well as give props to caretakers for work well done.

Our next Playbook chapter will be on scheduling and content strategies for high-impact PFACs.

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