Taking a Stand on Patient Experience Policy

By Jason A. Wolf, Ph.D.

“Never doubt that a small group of thoughtful, committed citizens can change the world.

Indeed, it is the only thing that ever has.”

These words by Margaret Meade may both best exemplify the efforts of our growing patient experience movement and in some ways now mischaracterize what is truly happening. What has evolved in the last decade, grounded in a rich history of patient’s rights and patient advocacy and catalyzed by the perfect storm of policy, technology, access to information and shifting expectations, is both a new sense of power and increased accountability to change the very conversation of healthcare itself. No longer are people in and engaging with healthcare systems globally sitting idly by as passengers, but rather with each passing day more and more are raising their voices on their own needs, expectations and perspectives. And while this may challenge many long standing traditions of HOW, specifically, the art of medicine was practiced, in fact, this emerging perspective may fundamentally underline the WHY of healthcare found at its very beginnings.

This premise, that we are reigniting our focus in healthcare on human beings caring for human beings, is at the heart of the growing patient experience movement. We are no longer just a small group, but an expanding community of committed people, both those experiencing care and those providing it. Yet in this effort there remains the need for sparks of progress and the dynamic tension that continues to push us past complacency to the new edges of this movement.

That very thing happened in the last year when a group of patient experience leaders associated with the Institute raised the critical issue of ensuring their voices and the voices of those they cared for were more actively engaged in shaping the very policy under which they were expected to act. From that inspiring discussion evolved an initial gathering held just last week to begin and expand a dialogue on what a stand on engaging in patient experience policy can and should look like. This meeting on creating a framework for patient experience policy brought together a range of rich and diverse perspectives, including patient and family voices, healthcare and patient experience leadership, organizations and institutes who have committed years to expanding this dialogue in healthcare for patients and families, caregivers and physicians and the policy framers themselves.

The purpose of this gathering was to act as a jumping off point for an expanding and inclusive conversation on the importance of engaging all voices in policy related to patient experience. The meeting served as a working session for shared discovery and creation and reinforced the importance of active engagement in driving policy decisions in our healthcare system today. As a result of the group’s work, critical priorities were identified with a shared recognition that this was just the first step in how these topics should be addressed. The priorities and some initial thinking around each include:

• Value – What is the value of a true commitment to patient experience?
• Patient/Family Voice – How do we give clear and strong opportunities for the voices of the healthcare consumer to be heard?
• Measurement – How do we ensure we are measuring what matters in ways that are both of value and minimal burden?
• Alignment – In what ways can we ensure coordination across the continuum of care so efforts reflect the totality of experience, not just distinct segments of it?
• Transparency – How can we expand the opportunity beyond just posting scores and cost to access to information and understanding of healthcare itself?
• Professional Education/Workforce Development – In what ways must we rethink training healthcare professionals to ensure a shared understanding of experience and a focused commitment to action?
• Healthcare Teams/Employees – How do we reinforce our commitment to those who have chosen to care for others, reinforce resilience and tackle compassion fatigue and burnout?

From this effort and alignment around these priorities, emerged a strong sense of both connection and purpose among the participants and their respective organizations. There was also an acknowledgement that this emerging coalition for patient experience policy had a great deal of work ahead. Perhaps the most important recognition of the gathering was that we are just at the beginning of this effort, and for all the voices that could fit in this small room, there are many more to still be engaged across the spectrum of healthcare.

This is where everyone who inspired this initial step, everyone who participated in this first gathering and all who are yet to engage in this effort now stand. At the edge of a new and vital frontier of bringing voice to ensuring healthcare remains true to its purpose. In a landscape of political churn and often competing organizational priorities by many of the interests who often capitalize on the healthcare system, this group and each and every one of you engaged in the patient experience movement have to put a stake in the ground that our voices and these issues are vital to where healthcare moves.

This is not to say there are not current efforts underway to address some of these very priorities today, but more so we believe with collective and clear voice the opportunities for impacting healthcare for all it encompasses is even greater. And with great thanks to the catalysts of this conversation, the participants in this gathering and to all of you who will move this effort forward, that is the opportunity before us. I can think of no greater or important journey we can be on together than that of ensuring the best we can as human beings caring for human beings.

Jason A. Wolf, Ph.D.
President
The Beryl Institute