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Q&A: Developing Patient-Reported Outcomes Measures

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In the U.S., efforts to measure and increase the value of health care services are focusing attention on patient-reported outcomes measures, which are used to assess the effectiveness of care from the patients' perspective. Eugene Nelson, D.Sc., M.P.H., director of the Population Health Measurement Program at the Dartmouth Institute for Health Policy and Clinical Practice, has been involved in ways to try to measurably improve and innovate in health care since the 1970s. Quality Matters asked Nelson about the benefits of patient-reported outcomes measures and what it will take to promote their widespread use in the U.S.

QM: Who are leaders in using patient-reported outcomes measures and what can we learn from them?

Nelson: Sweden has been the beachhead for the use of patient-reported measures. One of the more advanced examples is their rheumatoid arthritis registry, which has been collecting among other things patient-reported data on joint pain, current health status, and quality of life. This information is fed back to patients and forwarded to providers, as well as population health researchers. The version for clinicians includes information on treatments, medications, and adverse events—all of which can be used for benchmarking. It also allows clinicians to stratify outcomes by age and gender. The data are aggregated at the national level, which allows researchers to identify interactions of drugs and treatment effectiveness. It's a model that has captivated some Swedish health policy makers and business thinkers there as a way of getting to the heart of the matter: how quickly can a person get back to full function or how much can they have their functioning improve based on their treatment. They view it as a means of determining the value of health care and as a strategic asset for economy.

QM: How are these measures used in the U.S.?

Nelson: You tend to see them tested in places that are more progressive and see the clinical need. They often have a business model that is less dependent on fee-for-service care and more dependent on capitated payments. That creates an environment in which these innovations can take hold. They have been used at the Dartmouth Spine Center, using a model developed by Dr. Jim Weinstein, that demonstrated the value of patient reported measures more than a decade ago. The spine center's measures were a model for the Swedish work and have been used to determine whether surgical or medical interventions are best for certain spine conditions (link to In Focus article). There's also a lot of support for them from the federal government. The National Institutes of Health (NIH) has been a leader in this because of its investment in the patient-reported outcomes measurement information system (PROMIS), which funds about 15 different academic centers and leading psychometricians developing open source and open access, public domain measures of health status for adults and children. NIH got into this because they had the sense, and they were right, that there is a science of patient-reported measurements that can be used and improved just as there is science of imaging that can be used and improved.

QM: What do you see as their greatest benefit?

Nelson: First and foremost, they can be used to make a plan of care that matches the patient's health needs and then can track the impact of the care plan on the patient's outcomes. They can be used for public reporting and performance improvement based on comparative benchmarking and they can be used for comparative effectiveness research, and they can also be used by drug companies and health care innovation technologists for post-marketing surveillance to determine how a drug or treatment that has been tested has been doing in the real world.

QM: Do you think they will ever become mainstream measures here?

Nelson: Yes. There is an underlying belief at the Office of the National Coordinator of Health Information Technology, and increasingly at the National Quality Forum and the Centers for Medicare and Medicaid Services, that this data can be used for practice-based or clinical program improvement, comparative benchmarking, and public reporting. I hope to see them incorporated into meaningful use measures. Patient-reported measures are also an important part of performance measurement for accountable care organizations (ACOs). One of the hallmarks of an ACO is being accountable for the value of care that you produce. And value can be described or defined as health outcomes plus patient experience in relationship to costs over time. One major part of value is the changes in health status or health outcomes requiring, in part, patient-reported measures of health status. There is also interest from employers and those in the community health movement. Both are interested in improving population health.

QM: What might spur their adoption?

Nelson: Getting measures that are relevant and meaningful to patients and clinicians. This is going to be really important to gain traction. There's also a need to have supporting technology that makes it easy to integrate the collection, analysis and display [of data] into the clinicians' workflow and the supporting technology that brings this all forward in real time at the point-of-care or in virtual forms of care.

QM: How long do you think it will be before their collection becomes common practice?

Nelson: In a sense the first battle in advancing patient-reported measures has been won and it is called CAHPS (Consumer Assessment of Healthcare Providers and Systems). CAHPS has become an imperfect but well-established way of measuring the quality of care with respect to the patient's experience of care and those are patient-reported data/measures so, in a sense, there has been a lot of headway in accepting the value and importance in that regard. In terms of patient-reported measures of health status, my sense is that in three to five years that these will be much better established. For me it's difficult to imagine a patient-centered health system without having the voice of the patient prominently engaged and often times measured. It starts there.

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