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NQF Examines New Approach to Amplify the Patient’s Voice in Healthcare Quality Measurement

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A new National Quality Forum (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.

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