Since the Internet’s earliest days, patients have used online resources to share experiences, learn about diseases and treatments, and become advocates. A newer phenomenon has seen a growing number of online communities evolve into centers of patient-driven research (PDR)—especially for orphan diseases. Thanks to Health 2.0 capabilities, various models of PDR are being developed, usually involving methods of data collection and aggregation that can eclipse RCTs as meaningful evidence. A radical shift from the classical research model, this may result in accelerated findings and dissemination at a fraction of the cost of classic medical research.
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