We the People: Why Patient Experience Must Be the Foundation of Healthcare Policy

By Jason A. Wolf Ph.D. CPXP

Two things have become central to all I see, say and share in engaging in discussions on the patient experience globally: one, that ALL voices matter, and two, that in healthcare we are human beings caring for human beings. These ideas while simple in concept also provide for all that is complex in healthcare. They have implications in both the delivery of care and in the design of the policies and systems that support the delivery of care.

As we think about the delivery of care, the provision of care at a personal level, the idea of experience – of quality, safe and service focused encounters grounded in dignity and respect and driven by communication, partnership and knowledge – is a natural fit. As citizens of our planet, as people who choose our points of focus from ideals, beliefs and/or faith, we have been taught and encouraged to treat others as we hope to be treated and to act with compassion as we engage in caring for others.

Yet, as we get to the level of policy and the systems that both support and yes, constrain, our capacity to create environments of caring, we have a much greater opportunity. In instilling the ideas of all voices, not only do we add perspective, but we by default introduce potentially perpendicular ideas. As we author policy and adapt structures that circumscribe the humanity at the heart of healthcare, we create both clearer pathways and opportunities for obstacles. It is in the midst of this noise that we must find and mold the material needed to positively frame the human experience in healthcare.

It is pertinent to explore this idea during a week where we saw both Canada Day in Canada and Independence Day in the United States. As we explore the roots of these two great democracies, or of any democratic society around the world, there may be no more important concept than the first three words found in the United States Constitution – We the People.

Democracies by their very nature favor equal rights, freedom of speech and support the ability to raise conflicting perspectives. Therefore democracy, the idea of citizenship, of partnership, of equality, underlines the idea at the core of patient experience that all voices matter. Yet often, for people of all political beliefs and perspectives, for those who engage in healthcare from the aging, to those with chronic disease, family caregivers, to concerned parents and even for those who have yet to have a serious medical encounter, it feels as if the “system” and the policies that dictate its actions have forgotten them.

This idea that We the People have a voice that matters in healthcare is more relevant now than in any other time, not just in this period of policy change in the United States, but in how people view healthcare globally. This understanding of the criticality of the moment spurred a call to action by a group of committed leaders who have been listening to patients and peers, leaders and policy makers and recognized a great opportunity existed. If efforts were going to be more than just claiming to be “patient centric” and instead actually worked to engage the voices that are impacted by policy itself, then voices had to be raised, issues identified and actions taken.

This belief led to the initial idea of what has emerged as the Patient Experience Policy Forum (PXPF). The PXPF originated in 2016 through a series of conversations among a group of patient experience leaders and patient and family advocates who recognized the growing imperative to influence and help shape policy at the national and state levels on issues that directly affect the patient and family experience. The group and a growing number of individuals who have fostered its initial growth believed it was time to move the conversation on experience excellence beyond practice to address the policies and systems that were impediments to and encourage and support those that were supportive of the very principles all strive for in delivering care.

PXPF has quickly moved from concept to reality in establishing itself as a broad-based coalition of organizations and individuals engaged in advocacy and action to give a greater voice in healthcare policy to those working to improve the patient and family experience. It just announced last week that it will hold its inaugural meeting this September 19, 2017 in Washington, DC. PXPF will be working to advocate for policies and systems that will:

• Advance Patient and Family Partnership
• Elevate the Value Case
• Improve Patient-Centered Measurement and Reporting
• Strengthen Systems for Patient Involvement
• Expand Professional Education and Support
• Reduce Disparities

I invite you to explore the inaugural event of PXPF, share this opportunity with your peers and consider ways in which you can engage either in person or in an ongoing nature.

There is a reality in healthcare that we cannot overlook. That for as much as the conversation today, especially in the United States, is about the issues and challenges of insurance companies and/or constraints placed on provider organizations, those impacted by policy, especially those experiencing healthcare itself must not be left from this conversation. There are many organizations today doing great work advocating for specific diseases or segments of the population, but what is deemed missing is the idea that at the heart of all we do in healthcare, we must return to the human experience. If we believe fundamentally that caring for our fellow citizens, and in particular their health, matters, if we believe that ‘We the People’ matters, then we cannot waver in ensuring that patient experience must be the foundation of healthcare policy. I hope you will join us in this endeavor.

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