URMC Leading National Efforts to Give Patients a Bigger Voice in Their Care

In the national drive to improve health care quality and value, physicians are looking for clues from a source that hasn’t been heard from yet, but that could yield important new breakthroughs: the patients themselves.  

Health care systems in the U.S. and around the world are collecting and analyzing patients’ perspectives on their care, using computer programs that instantly capture and archive the data. Patients’ input on what worked for them – and what didn’t – is creating a kind of health care “trip advisor.” But rather than being an online reference for other patients, this tool will be a road map for doctors as they seek the best care pathways for future patients.

Judith Baumhauer, M.D., M.P.H., Professor of Orthopaedics at the University of Rochester Medical Center, writes about the impact of computerized patient assessments in the July 6 issue of the New England Journal of Medicine. In her perspective article, “Patient Reported Outcomes – Are They Living Up to Their Potential?”, Baumhauer examines how medical centers around the world are working to capture the assessments’ full potential, amid the challenges of incorporating them into busy clinical environments.

“There is a growing chorus of support from clinicians, researchers, and payers for embracing patient-reported outcome (PRO) assessments in clinical care,” Baumhauer writes. “But there are still important practical questions about how data on these outcomes should be collected, visualized, shared, and used to improve the quality of care.”

Patient-reported outcome surveys are not new to health care. Providers have long used them to assess quality of care, but traditionally they were rendered once, after care was complete. Paper-based surveys were cumbersome to administer for provider and patient, and it was difficult to collect and use the data in them.  In 2009, Northwestern University, using National Institutes of Health funding, delivered a game-changer: the PROMIS patient reported outcome tool. PROMIS (Patient-Reported Outcomes Measurement Information System) is a statistically validated, computer-driven survey that uses computer adaptive technology and item-response theory for highly detailed, accurate results. The challenge for health care systems: how to gather information from large numbers of patients efficiently, so the wealth of data is easily accessible and usable by clinicians.

 “The problem with patient-reported outcomes has always been translating that vision into a workhorse of a system that can collect and analyze tens of thousands of patient visits a month,” Baumhauer said.

Baumhauer was invited to write the NEJM perspective because URMC is one of the world leaders in designing a system that works in a clinical setting, and puts patient insights to work in improving care.

Using the PROMIS tool, URMC designed a process to efficiently capture patient perspectives during their care, at every outpatient visit. URMC collects its assessments on iPads that patients get at check-in. While they sit in the waiting room before their appointments, patients tap their answers to simple questions about pain, function and mood. Physicians can view patient responses instantly, compare them with scores from a reference population, and go over the results with the patient during their visit. Patients get a vivid picture of their progress; the URMC-designed interface displays their cumulative pain, mood and function scores as line charts. Physicians use the data to spark conversations with patients and engage them in shared decision-making on their care.

In just two years, URMC has collected a million patient-reported outcome survey responses. The project began in Baumhauer’s department, Orthopaedics, and has expanded to 30 other URMC departments and divisions in the past year. As medical director of PROMIS at URMC, Baumhauer leads the organization’s efforts to implement patient-reported surveys throughout the medical center and make them the standard of care for every patient encounter.

 “We implemented PROs widely and made it highly visible to our patients and physicians,” Baumhauer said. “Most importantly, we showed that this information has real clinical value – as a physician, it has changed how I practice. And for health care organizations, it can help you deliver the most effective care more cost-efficiently.”

For example, by looking at aggregate data on Brostrom lateral ligament reconstruction for chronic ankle sprains, which Baumhauer and her fellow foot and ankle surgeons have performed for years, they discovered that the most expensive variation of the procedure, using a fiber tape augmentation, was also the least effective. Discovering that patients report poorer outcomes with this procedure is a clear sign to the surgeon to choose a different method for future cases.

Data from the PROs give the clearest direction yet for physicians and patients who are considering elective surgery, Baumhauer said. “Now when a patient asks about surgery for his or her condition, I can say, ‘Based on hundreds of patients who had the same condition, you’re functioning too well to benefit from surgery at this point.  Let’s try other options such as physical therapy, orthotics, or arthritis medication.’  Patients love that. They often say, ‘I was wondering if I would benefit from surgery…now I know.’”   Baumhauer can employ the knowledge from hundreds of thousands of past patients to make the best choices for current and future patients. 

“This program is the ultimate in paying it forward,” Baumhauer said.  “Listening to the patient and capturing their impression of how they are doing, in a statistically validated way, helps the doctor to treat the patient better, helps future patients with similar conditions know what to expect from treatment, and allows us to be accurate in our interpretation of treatments.  It puts the patient front and center in health care and ensures that their voice is heard. For the first time, the patient’s own perspectives on their care are part of their permanent health record, right alongside the doctor’s.“