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Overcoming Barriers to Collecting Patient-Reported Outcomes

September 7, 2017
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PROMs are ‘missing link’ in defining a good outcome, according to Partners’ Neil Wagle

Nine months ago I had to have hip surgery. Although I didn’t have any complications in the hospital, my recovery has been challenging and slower than I was told to expect. One nagging question I have is how the surgeon and health system that treated me know about or report on my assessment of the outcome — because I wasn’t really asked about it.

I did fill out a survey about my experience at the hospital, but that is different than my assessment of the success of the surgery nine months later. When I have told the surgeon about my ongoing pain, he says that some people take longer than others to heal. But does my impression of mobility improvement get recorded or reported anywhere?

As I thought about these issues, I came across a recent article in the New England Journal of Medicine Catalyst by Neil Wagle, M.D., M.B.A., about the five-year effort at Partners HealthCare to implement patient-reported outcomes measures (PROMs).

As Wagle, Partners’ medical director for quality, safety and value, points out, despite the proliferation of clinical performance measures, most capture the process of care but fail to capture the very reason that most patients seek care: to improve their symptoms.

“PROMs are precisely the missing link in defining a good outcome,” he wrote. “PROMs are the outcome of relevance in nearly every diagnosis, including many in specialties that currently lack good quality measures. By making PROMs an integral part of clinical care, providers can use them to improve an individual patient’s care as well as in aggregate to improve care of a population.”

But he noted that health systems have been slow to adopt PROMs due to technological and operational barriers. A platform to gather patient input has to be integrated into the EHR, he writes, so that results flow into the point of care in real time in order to be actionable. PROMs must fit into provider workflows to be widely adopted.

Despite these barriers, Wagle wrote that Partners has concluded that PROMs are essential to real-time clinical care the system now collects PROMs in 21 specialties and across 64 clinics in orthopedics, urology, psychiatry, and cardiac surgery. It has collected more than 200,000 PROMs.

Although he described the “battle scars” from engaging clinicians, Wagle said that incorporating PROMs data into the EHR in real-time can save time and empower clinicians to engage patients in better, more personalized care. “For example, every day in my primary care clinic, I see men with symptoms of benign prostatic hypertrophy (BPH). Asking about the seven cardinal symptoms of BPH and their resulting quality of life can absorb precious time. When a patient comes in with his International Prostate Symptom Score already answered, I vault to step 9 of the conversation, the valuable part where we talk about how to help. Instead of spending our time gathering information, we use it to marry my clinical knowledge with the patient’s unique goals and preferences to produce a better outcome.”

Wagle also addressed some standards issues: For instance, there is a lack of consensus on which PROM is best for many conditions. But he noted that groups such as PROMIS plan to provide free, concise, valid PROMs, and the International Consortium for Health Outcomes Measurement (ICHOM) and others are encouraging coalescence around a single set of measures for a particular diagnosis.