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- Title
Patient-reported outcomes as a source of evidence in off-label prescribing: analysis of data from PatientsLikeMe.
- Authors
Frost, Jeana; Okun, Sally; Vaughan, Timothy; Heywood, James; Wicks, Paul
- Abstract
Evaluating a new use for an existing drug can be expensive and time consuming. Providers and patients must all too often rely upon their own individual-level experience to inform clinical practice, which generates only anecdotal and unstructured data. While academic-led clinical trials are occasionally conducted to test off-label uses of drugs with expired patents, this is relatively rare. In this work, we explored how a patient-centered online research platform could supplement traditional trials to create a richer understanding of medical products postmarket by efficiently aggregating structured patient-reported data. PatientsLikeMe is a tool for patients, researchers, and caregivers (currently 82,000 members across 11 condition-based communities) that helps users make treatment decisions, manage symptoms, and improve outcomes. Members enter demographic information, longitudinal treatment, symptoms, outcome data, and treatment evaluations. These are reflected back as longitudinal health profiles and aggregated reports. Over the last 3 years, patients have entered treatment histories and evaluations on thousands of medical products. These data may aid in evaluating the effectiveness and safety of some treatments more efficiently and over a longer period of time course than is feasible through traditional trials.
- Publication
Journal of medical Internet research, 2011, Vol 13, Issue 1, pe6
- ISSN
1438-8871
- Publication type
Journal Article
- DOI
10.2196/jmir.1643