A National Quality Forum report finds that the personal health information on patient support networks can be used for the development of patient-reported outcome measures and the NGF is calling on providers to use online patient support networks as a new way to gather data on how patients feel. It points to the growing online community where patients talk to each other as a place where providers can relate that information back to the healthcare system. NQF partnered with PatientsLikeMe, an online networking site with more than 500,000 members, to analyze how the patient information on the site can be helpful to measurement developers, focusing on patients with COPD, multiple sclerosis and rheumatoid arthritis. Patients were asked to provide information about their symptoms, including severity of pain and levels of fatigue, as well as more open-ended responses that addressed issues they wanted their doctors to discuss with them more like weight gain or understanding when a medication is effective. The study found patients with all three conditions reported fatigue as a prominent symptom. The authors concluded the information can provide insight into quality of life that might not be gathered from expert panel sessions used to develop quality measures.
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