Patient-Driven Research: Rich Opportunities and Real Risks

Gilles J. Frydman


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.

Starting years before the Institute of Medicine (IOM) published the seminal report Crossing the Quality Chasm, e-patients have contributed to a number of changes in models of care for patients suffering from unusual diseases, brought about by researching and sharing the latest scientific information and personal narratives of their conditions, by joining with others in public conversations. They have helped forge the participatory medicine model, where an important component of the patient contribution is to balance what evidence-based medicine or conventional medical wisdom recommends with what is possible, desirable, and most acceptable for the individual patient.

Thanks to the 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.

While research projects conducted in a medical environment requires supervision by IRBs, no such limitation currently exists in PDR, providing both speed and potentially introducing new forms of bias in these PDR research models, including population biases, recruitment and other methodological issues. 

There is an urgency to this call-to-arms: acceptance of PDR as valid clinical research requires validated methodologies and tools, democratization of data, ethical oversight, and immediacy.   Without these critical drivers, such research will continue to be marginalized and its benefits  available only to the activated minority. The Journal of Participatory Medicine stands ready to help address the urgency.

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