Testing Your PFA Integration

by Tiffany Christensen, CPXP

As we look to The New Existence, so much of the transformation is rooted in partnership with patients and families. To create new models, build better care teams and address systemic issues, we must begin holding ourselves to a standard of integration that will allow us to be successful.

“Integration” in the context explored within this blog refers to the depth and breadth to which your organization has integrated and acted upon the patient and family voice. This integration must be intentional, systemic and consistent. So, for example, do the conversations of your Patient and Family Advisory Council go beyond the meeting walls? Do the suggestions made by your Patient and Family Advisors have a process for vetting and implementation? Do you have Patient and Family Advisors across the organization or only in pockets? These are some of the considerations needed to understand the true integrated nature of your Patient and Family Advisors work that will lead to bolder applications of the ways in which we co-create our future in healthcare.

Dr. Tanya Lord and I have been colleagues in the “PFA space” (PFA = Patient and Family Advisor) for many years, and this blog is written with both of our expertise entwined. Both of us have been PFAs and have led PFAs in a variety of roles and organizations. So much has changed over the years, especially with the introduction of co-design; but at the same, much remains the same. In too many ways, PFAs are still working at a superficial level and are not being utilized in ways that are more satisfying to them and more beneficial to the organization.

This blog serves as a short guide to assessing integration using only three questions that Tanya Lord and I have found to be the most important and revealing.

Before we look at the questions, however, it should be said that, ideally, an organization needs a solid foundation of trained and seasoned PFAs with regular engagement. It also needs the capacity to pull in other community members who are unable or uninterested in committing the time it takes to be a be PFA. By having both of these perspectives at your fingertips, an organization has what some people call “free consulting,” which is not intended to be offensive in any way. What this means is that patients and families can provide an organization as much valuable information and insight as a professional consulting company that demands top dollar for its services. The difference here is that consultants organize themselves, but PFAs require a great amount of organization. The investment of time and coordination of PFAs may be well worth it, given the line to success and meaningful change is much straighter when based on the actual “lived experience” of your organization.

So, on to the three questions that we recognize as essential when assessing the integration of patient/family voice within an organization:

1. Are PFAs able to experience the changes they have helped to make? True and meaningful change impacts or transforms a piece of the patient experience. If your PFAs, their loved ones, neighbors or friends cannot perceive a difference after a change has been made, there is work to be done both in ensuring the integration includes a clear process to action and diligence to ensure the change is confirmed before success is declared.
2. How many staff and clinicians know about your PFAs? If you walk the hallways of your healthcare organizations and stop a random sampling of staff and clinicians, what would be their answer to this question: “How have our organization’s PFAs helped transform the way we see and do our work here?” Sadly, in most organizations, most people would respond to this question with “What are PFAs?” or “Oh, we have those?” In too many organizations, the work of PFAs is completely unknown to the frontlines. Integration requires PFAs to no longer be invisible but, rather, be a well-known partner in improvement and a source of wisdom within your organization.
3. When crisis hits, are PFAs called in or pushed out? The importance of this question has been clearly amplified during COVID-19. As the pandemic hit, some organizations rushed to find ways to connect with their PFAs remotely to ensure clear and relevant communication and understand the issues facing those with chronic illness, new symptoms or urgent needs. For the most part, however, organizations deemed PFA work to be an unnecessary “luxury” and asked PFAs to wait until the crisis was under control before resuming their duties. While we must honor the decisions made by organizations under the pressure of the pandemic, the choice to ask PFAs to stay away is a great indication of the depth of utilization established before the pandemic hit.

These three questions were designed and shared with you out of years of experience and trial and error. In the past, working with PFAs was often just a check-box, but more organizations are coming to understand the true value of building a partnership with trusted community members to capture and make changes based on the lived experience. It is our hope that these questions will one day, or perhaps starting today, become not only assessment questions but also stakes in the ground for securing organizational integration:

1. Improvements made via PFA work can be perceived and experienced by those receiving and/or delivering care. In other words, it’s meaningful, tangible and impacts the lived experience.
2. Staff and clinicians are aware of the work of PFAs and see them as a resource.
3. When crisis hits, PFAs are called in to partner in strategy design.

This pandemic has revealed many things, but one that rises above the others is how much healthcare is truly a human experience. Seeing the deep interconnectedness between our staff, clinicians, patients and families asks us to keep building the bonds of partnership and respecting the expertise each person brings to the healthcare table. Looking to The New Existence, we know there is much work to be done, but wouldn’t it be so much more fulfilling if done by all of us working together?

Thank you to Tanya Lord for contributing to this blog with experience, expertise and hard-won strategies. Dr. Lord is the Director for Patient Family Engagement at the Foundation for Healthy Communities in New Hampshire and is a member of The Beryl Institute’s Global Patient and Family Advisory Board.

Tiffany Christensen, CPXP
Vice President, Experience Integration
The Beryl Institute