Don't let lack of evidence delay patient-centered changes

As president of Planetree, co-chair of the National Priorities Partnership and a member of numerous committees, task forces and collaboratives convened to advance patient-centered care, I have participated in numerous discussions about the need for a stronger evidence base for patient-centered care practices. I couldn't agree more. If one of the most persistent barriers to more widespread adoption of patient-centered care is the lack of evidence, then absolutely, we should doggedly pursue doing what it takes to fill that knowledge gap.

However, what makes me cringe is when the demand for more evidence eclipses the need for more immediate changes in behavior, in policies and in practice to reframe the way healthcare is delivered to make the system work better for patients. These two activities—evidence-building and execution of change—can and should occur on parallel paths.

And yet, “show me the evidence” seems to be the mantra of our time, trumping and often impeding action. At times, I can't help but think this demand for data is a stall tactic or perhaps a defense mechanism—an excuse for why some seemingly straightforward adjustments to the way things have always been done have not yet taken hold more universally.

Consider 24-hour, patient-directed visitation, sharing the real-time medical record, or the bedside shift report, for instance. The shortage of data on just how these changes influence patient outcomes, quality and safety becomes a “safe” reason not to implement them yet. Certainly, this is a much more palatable rationale than the fear that patient-centered practices such as these will disturb the historical patterns that protect clinicians' time, create barriers between clinicians and family members, and enable us as professionals to control the extent and timing of information shared with patients and their loved ones.

In the interest of promoting simultaneous action on both fronts—evidence-building and field practice—I suggest that rather than wait for the emergence of “best practices” in patient-centered care (i.e. those practices supported by solid, empirical evidence), as an industry, we elevate the importance of data that definitively identifies certain practices as “patient preferred.”

Over the past decade, Planetree has captured the voices of more than 50,000 patients, family members and professional caregivers through focus groups, listening sessions and interviews.

Across regions, cultures, generations and other demographics, certain hallmark patient-centered practices, including those referenced above, consistently surface as the way patients want their healthcare delivered.

They don't want to be needlessly (and somewhat arbitrarily) separated from their loved ones. They want access to their personal health information in the same format and with the same degree of timeliness afforded their professional caregivers. They want their loved ones to be supported to take on aspects of their care and care management. They want to be listened to and treated with respect and dignity. And they want to have ample opportunities to participate in the development of their treatment plan and to establish goals that address their personal health and wellness priorities.

These patient voices should be our true north as we establish the patient-centered care research agenda. Based on what patients identify as priorities, we must continue to build the empirical evidence base for patient-directed visitation, shared medical records, care partner programs, the bedside shift report and patient and family involvement in care planning.

In addition, patients and families identify compassion and caring attitudes from their providers as essential components of quality care, yet little comparative effectiveness research has been focused on identifying the elements of compassionate care that most influence the outcomes patients and families desire.

Comparative effectiveness research examining the clinical, operational, and financial value of such patient-preferred practices is needed. However, all of us who have been involved in setting up randomized, double-blind clinical trials—essentially the burden of entry for establishing “solid evidence”—know this is a time-intensive and laborious process. It is work worthy of doing, to be sure.

But, by recalibrating and redefining what constitutes ample evidence to spur adoption of practice change to include “patient-preferred practices,” and not limiting ourselves to the traditional definition of evidence-based “best practices,” we position ourselves to accelerate the work of creating a truly patient-centered healthcare system.

After all, that is the reason why patient-centered care is now a mandate of the many healthcare quality-improvement task forces, collaboratives and committees that are flourishing. As we enter the new year and set our goals and priorities for 2014, I would encourage healthcare executives, practitioners, policymakers and researchers to focus energy and attention on these patient-preferred practices as the most powerful levers for delivering on the promise of a healthcare system that truly puts patients first.

Susan Frampton