Getting From Patient Reports to Measured Performance

A panel at the Pharmacy Quality Alliance talks about how to take patient input and turn it into meaningful measurement.

Increasingly, value-based initiatives look for ways to bring the patient’s voice into the equation. But that can be harder than it sounds. Panelists at the 12th annual meeting of the Pharmacy Quality Alliance, meeting this week in Baltimore, Maryland, shared ideas on converting patient input into meaningful performance measures.

Led by moderator Molly Ekstrand, RPh, BCACP, AE-C, manager of the Medication Management Program at Park Nicollet Health Services, the discussion featured Jason Goldwater, MPA, senior director of the National Quality Forum; Eleanor Perfetto, PhD, MS, senior vice president for Strategic Initiatives at the National Health Council; and Angela Stover, PhD, health services researcher at the Department of Health Policy and Management, University of North Carolina at Chapel Hill.

The first thing to understand is the distinction between patient-reported outcomes (PROs), which offer information with no interpretation; patient-reported outcome measures (PROMs), which collect information told by the patient, again without interpretation; and, finally, patient-reported outcome performance measures (PRO-PMs), which aggregate the patient reports into “a reliable, valid measure of performance.” This last one must be tested before it can be used.

Perfetto said that to create measures that truly matter, it’s important capture the right information. “Just because it’s patient-reported, doesn’t mean it’s patient-centered,” she said.

In 2009, the FDA published a guidance on the use of PROs in labeling claims, which Perfetto described as a key benchmark for whether a measure is a “legacy” measure—one that may or may not represent things patients say are important.

“We really ought to make sure the legacy measure is a good measure,” she said. Understanding a measure’s pedigree—where it came from—is key.

Goldwater, whose organization does not develop measures but endorses them, worked at the precursor to CMS during the infancy of measure development—when it nearly impossible to get reporting data from hospitals, let alone the patients receiving care.

“Patient engagement has become much more important in the years since then,” he said. “Having a dynamic in where they are actively engaged with their provider—that can have a tremendous long-term effect on their health.”

He agreed with Perfetto assessment about patient-reported measures—and as a corollary, said there are vast new ways of getting at what patients want. Social media offers tremendous clues. Goldwater offered an example of his efforts to develop questions to turn into a PRO-PM in chronic obstructive pulmonary disease (COPD). His NQF colleagues were skeptical, but he used a simple Twitter search to come up with 3 key issues that merited further exploration.

Stover is working on measures in cancer care with the American Society of Clinical Oncology, and before that was a developer of the National Institutes of Health PROMIS (Patient-Reported Outcomes Measurement Information System) across a variety of health conditions. When testing PROs for patients in chemotherapy, there are important considerations—such as making sure the developers are not “gaming the system” by picking patients who are the least sick and the most educated.

In her current work in North Carolina, the researchers are careful to use an interactive voicemail system, since some patients in the state’s Outer Banks do not have the internet. They are careful to capture patients in both academic settings and community clinics.

Perfetto said this approach is important. “Very often patients haven’t been asked to the table, and that can make an important difference in the way patients think about care,” she said.

Goldwater said this was his thinking in using his Twitter experiment to start the work on the COPD measure. By itself, it would not have been sufficient, but he saved time and captured information on a medication causing anxiety, and the fact that there’s confusion over the difference between COPD and asthma.

Who else needs to be involved? Stover said there’s a need to make payers part of the PROs conversation, as well as pharmacists. And Perfetto strongly recommends that measure developers not be afraid of learning from the professionals in market research.

“They do their jobs really well,” she said.

Stover said that with so much of healthcare happening between visits, the next wave of PROs should more accurately measure things like nausea or other side effects.

Most of all, the experts agreed that the days of bombarding patients with questionnaires in the doctor’s office has passed. With wearables or other technology, there are alternative that can allow health systems to collect information without wasting precious office time. “It needs to fit into the person’s life,” Perfetto said.