• A new NQF report evaluates an innovative approach to capture broad input from patients about the healthcare-related issues they care about the most, to inform healthcare performance measures.

    Using feedback from online patient communities of thousands of patients, researchers identified opportunities to improve tools used to collect patient-reported outcomes (PROs). This approach marks the first time that patients’ voices have been captured on such a large scale for the development and refinement of select measures.

    Working with NQF, the online patient network and research platform PatientsLikeMe® analyzed data from its multiple sclerosis (51,000 members), chronic obstructive pulmonary disease (2,500 members), and rheumatoid arthritis (10,000 members) communities to better understand health-related quality of life and functional outcomes. Members of these communities also provided feedback on specific tools used to collect patient-reported outcomes (PRO) data. Guidance from patients indicated that tools available for clinicians to collect PROs do not use language that patients would use to describe common symptoms, presenting an opportunity for “real-world” improvement.

    “We need to focus on the issues that are most important to patients,” said Shantanu Agrawal, MD, MPhil, NQF’s president and CEO. “This approach, drawing on the experience of thousands of patients engaged through the PatientsLikeMe community, is a huge step forward to amplify the patient voice to improve healthcare quality.”

    The Robert Wood Johnson Foundation funded PatientsLikeMe, in partnership with NQF, to evaluate using feedback from online patient communities to inform quality measures for improving care in critically important clinical areas. The work builds on NQF’s framework, outlined in a 2013 report, to translate PROs—reports of the status of a patient’s condition that come directly from the patient, without interpretation of the responses by clinicians or anyone else—into PRO-based performance measures.

    Three measure development projects in NQF’s Measure Incubator™ served as the research test bed for this effort. The Measure Incubator facilitates efficient measure development and testing in areas of healthcare for which quality measures are underdeveloped or nonexistent. More than half of the NQF Measure Incubator’s current projects focus on PRO-based performance measures, which NQF stakeholders identified as high-priority because there are too few of these kinds of measures in use today.

    “Patients are the ultimate stakeholders in their care and their health, so it’s critical to know what they need and value most,” said Ben Heywood, co-founder and president of PatientsLikeMe. “This work is the bridge between our robust online patient communities and the National Quality Forum’s long-respected work to identify the best measures of healthcare quality.”

    NQF discussed its work with PatientsLikeMe on a recent webinar, which kicked off the Measure Incubator’s 2017-2018 Learning Collaborative Patient-Centered Measurement Webinar Series. The webinar series continues September 25 with a panel discussion about patient-centered care measurement featuring researchers from the American Institutes for Research and NQF’s president and CEO, Shantanu Agrawal, MD, MPhil. Register now!

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