Perspectives

Patient Experience Data Are Outcomes


 

From Press Ganey Associates, Inc., Wakefield, MA, and Harvard Medical School and Harvard School of Public Health, Boston, MA.

In fits and starts, but with increasing certainty, health care is changing its organizational focus from the activities of clinicians to meeting the needs of patients. That progress has been slowed and complicated, however, by lack of a performance framework that captures the extent to which patients’ needs are being met. In the absence of such data, “quality” has often been described in terms of the reliability of providers in complying with evidence-based guidelines.

Provider reliability is important, of course, but no substitute for the measurement and improvement of actual patient outcomes. After all, health care exists not to grade providers but to help patients. But clarity on that focus raises some important questions that we have not often discussed in the past.

What exactly are we trying to accomplish in health care? What is the goal? How can we tell how we are doing?

The answers cannot be found solely through measurement of “hard” clinical outcomes, such as death and disability. Yes, these are the most important focuses for improvement in health care, but we cannot deliver immortality, and we often can only delay complications of chronic disease. There is something else that our patients seek from health care, and it can only be measured by asking them directly.

Measuring "Peace of Mind"

That “something else” was described by one of my colleagues as “peace of mind that things are as good as they can be, given the cards that we have been dealt.” That may not be the most compact term in health policy, but I have yet to come up with something more concise— and it captures something immediately recognizable as important to anyone who has ever taken care of a patient with a serious disease, or spoken to that patient’s family. Of course, we should do our best to help patients live as long as possible, and of course we should optimize their health and relieve symptoms at every step of the way.

But there are other things that influence the degree of suffering that patients endure along that way, like hope, trust, anxiety, fear, and confusion. They are often considered part of the “art of medicine,” but I think we call them “art” because we are nervous about approaching them with discipline and rigor. In fact, these things can be measured, and managed—and the organizations that improve them are often rewarded with greater market share and professional pride.

Some of my clinician-colleagues do not immediately think of patients’ “peace of mind” as an important outcome, but when their family members or friends have medical problems, this issue immediately comes to the foreground. These clinicians do everything in their power to ensure that their special patients do not have to endure long delays or uncertainty about what is going to happen next, or reconcile conflicting advice, or wait for phone calls that will come…well, sometime soon. We know such experiences are part of what is often called the “disutility of care,” but when they happen to our intimates, we recognize it as something closer to torment.

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