Integrating the Patient Voice in Patient-Reported Health Outcomes
Changing the focus of patient-reported outcomes to be centered on a patient’s individual goals and preferences has the potential to improve care.
Challenges to using patient-reported outcome measures
Patient-reported outcome measures (PROMs) are designed to assess health outcomes like quality of life, functional status, mental health, health symptoms, and experience of care. While PROMs have traditionally been used to assess treatment effectiveness in clinical research, health systems are now looking for ways to integrate PROMs into clinical care for better assessment and to improve patient care. Currently, PROMs are primarily collected using standardized instruments that produce quantitative scores based on patient function and symptoms. This method may not be of mutual value to providers and patients if PROMs are not being consistently reported by patients or do not represent the patient’s personal health outcomes and goals.
There are also challenges in collecting and using PROMs in care, including successful integration of PROMs data in clinical workflows, electronic data collection, integration of the data into the electronic health record, and creation of user-friendly data displays.
Use of patient-reported outcome measures in orthopedic care
Dr. Leif Solberg, a clinician and researcher at HealthPartners, an integrated multispecialty health system in the Minneapolis–St. Paul metropolitan area, wanted to improve the use of PROMs through a better understanding of how both clinicians and patients value and use PROMs for care planning. “As a clinician, I’ve always been interested in research as a way to help develop better ways of caring for patients.”
According to Dr. Solberg, orthopedics is an ideal field for the collection and use of PROMs, because orthopedic procedures—like knee or hip replacements or spine surgery—are big medical events for patients. Data collected before and after these events provide a consistent and valuable comparison among surgeons, care systems, and groups of patients.
At HealthPartners, which has been a leader in using PROMs for a decade, PROMs are collected before and after eight different orthopedics procedures through a combination of electronic tablets at visits, emailed links to Web surveys, and mailed paper surveys. Pre- and post procedure outcomes scores typically vary significantly since patients only undergo these procedures to improve the quality of their lives.
Valuing the patient’s voice
Dr. Solberg and his research team talked to and surveyed patients to understand what outcomes are important to them, as well as what information about their personal situations doctors should know. They also asked patients what current numeric PROM scores meant and whether they were useful to the patients themselves. The researchers found that most patients preferred individual outcomes (e.g., “ability to walk without pain/discomfort” or “ability to return to an active lifestyle”) over a quantitative PROM score, although patients acknowledged the quantitative score may be useful for their physicians. Patients also thought that personal information about themselves and their life would help their care team best support their recovery.
“The most important thing we learned from patients is that they prefer outcomes that are individualized. We need to start learning how to collect and use that information if we’re going to get anywhere in medical care. It’s not good enough just to use wonderful quantitative measures; they need to be supplemented with personalized information that’s going to make care more patient-centered.” – Dr. Leif Solberg
The research team also surveyed orthopedic surgeons to understand why PROM results aren’t routinely used in patient care and what could help improve their value. While there are still barriers to PROM use, orthopedic surgeons’ feedback included engaging with patients earlier on PROMs, using them as a communication tool with patients, and encouraging their use with the care team to facilitate continuity of care.
While this research has provided new information about patients’ and clinicians’ opinions on the use of PROMs and barriers to use in clinical care, HealthPartners’ orthopedics departments are also using the findings to improve the use of PROMs, including reporting performance scores and exploring ways to use the data to improve quality of care.
