WIKIMEDIA, CDCHealth research projects are increasingly being conducted that do not fit the standard picture of biomedical research. On the online crowdsourcing health platform Genomera, for example, a small group of individuals set up a study to test the effects of the intake of different kinds of fats on their ability to do mathematical calculations, while another Genomera group linked genetic variation to the effects of vitamin intake. On the patient social networking site PatientsLikeMe, a group of ALS patients self-experimented with lithium to determine its effects on the progression of their disease and produced systematic results that were published by a leading scientific journal. And large numbers of patients have responded to calls by PatientsLikeMe and other health networking sites to rank therapies or to log their experiences while using approved drugs off-label.
As these examples indicate, those concerned about particular diseases or other aspects of health, or who are interested in medical research itself, are increasingly playing a leading role in research. Such participant-led research (PLR) is gaining popularity and attention, especially as its outcomes have started infiltrating peer-reviewed scientific journals. Advocates of PLR highlight its great untapped potential to contribute to medical knowledge, albeit in unconventional ways: by providing a more bottom-up approach to selecting research questions, by accelerating patient recruitment and completion of clinical trials, and by offering a more transparent research process involving empowered participants. At the same time, critics have voiced concerns about the scientific rigor of such research, including concerns about the reliability of self-reported data and bias resulting from self-selection of ...
