When we talk about patient experience, we often speak about our work to make our organizations more "patient- and family-centered." This reflects the reality of real structural and cultural barriers that inhibit our ability to put the patient at the center of all we do.
For several decades now, patient and family advisory councils have been active in our organizations as part of our strategy to become even more patient-centered. PFACs are groups of patient and family advisors who are embedded in our hospitals, meeting with leaders regularly to implement programs and helping us evolve our culture. Often, these advisors are also members of important hospital committees such as quality committees. Many advisors also help to teach our teams and providers about how to better connect and communicate with patients and families through "family faculty programs." Many PFACs also develop and sponsor patient- and family-focused programs in their institutions.
I've had the privilege of working with PFACs and patient advisors for nearly my entire career in healthcare. I can honestly say that every program they have touched is better because of their feedback and involvement. Patient advisors, when effectively integrated into our organizations, have truly made a difference.
However, like nearly everything else in healthcare in this post-pandemic world, PFACs have suffered. Some of the underlying challenges of the PFAC model have been exposed. Many of us find ourselves at a soul-searching moment in regard to engaging patient advisors in our work. How do we maintain patient and family input as a vital force for positive change and partnership? Given what has happened in recent years, how should we evolve these structures and programs to meet a new moment?
The Beryl Institute, a global organization that is a leader in patient experience programming and policy, recently released its survey of more than 600 patient experience leaders from 25 countries, including the U.S. This annual study — available here — has been a great way to benchmark and follow trends in patient experience. The survey includes questions on PFACs and this year’s results, published just last week, also reflect that we are at a pivot point.
The survey showed that organizations are increasingly committed to engaging patients and families in patient experience improvement work. In fact, the percentage of organizations reporting this as an important focus is at the highest level in years. However, despite this commitment, the number of PFACs has declined from previous years. Engagement of patient advisors has also declined across a broad range of issues, including patient involvement on committees and working with hospital leaders on specific projects.
There are a number of factors that likely underlie this dynamic. PFACs, like so many other things during COVID-19, stopped functioning for periods and then largely went virtual during this difficult time. Engagement between advisors and hospital leaders — which is the lifeblood of PFACs — was harder given the burdens being shouldered by both patients and hospital teams. Momentum was lost. In addition, hospitals are facing some of the toughest budget challenges in recent memory. Resources for things like patient advisory groups have been reduced as healthcare organizations try to recover their balance. Like many other things related to patient experience, we are clearly in a moment of re-evaluating and rebuilding.
At NewYork-Presbyterian, we are looking at this moment as an opportunity to take our patient and family advisory structures to a new level. We are reorganizing our councils and welcoming members back into the hospitals for meetings. We are also following the lead of other organizations and adding virtual communities to our advisory structure to tap the insight of patients and family members who want to give us feedback but don’t have a desire to attend regular meetings. In other words, we are expanding the community of advisors and offering modes that allow people to choose how and when they want to be engaged. We are also gaining recommitment from our organization’s leaders on working with patient and family advisors. We have learned that when engaging with patient advisors, you must invest time to build a partnership. When we invest our time and resources, the returns are enormous.
There are some encouraging signs. When we reached out to our patients and families soliciting their willingness to serve as advisors this year, we received a record number of applications. Our patients and families want to work with us! And we are aware of health systems around the U.S. that have built virtual patient advisor communities that number in the thousands of members. There is enormous untapped potential in our communities. If we are willing to invest our time, energy and resources, we can make meaningful steps to further evolve our organizations to become more patient- and family- centered. Like everything else in patient experience, we need to be thoughtful, specific and strategic in how we do this to get the results we all want. The time is ripe for this work to be done.