Patient groups practicing citizen science: A study of patient-driven research methods

With the popularization of social technologies and emergence of new electronic data collection capacities, patient interest groups (PGs) are expanding their role in biomedical research. Through grassroots efforts, a handful of PGs have begun using online tools—interactive message boards, community forums, web surveys, etc.—to compile and analyze disease-specific information from patient members. While such “citizen science” arouses mistrust from biomedical professionals questioning the methodological rigor of patient-driven research, this concern lacks empirical substantiation and merits further study. To address this literature gap, this study uses data from 15 semi-structured qualitative interviews held with PG representatives, and explores the step-by-step processes by which PGs generate novel research information by use of experiential accounts. Results showed PGs' methods roughly resembling scientists', with significant research liberties taken along the way. Like scientists, PGs make careful comparisons across patient-pooled data and conventionally formalize information into research hypotheses, datasets, and statistical analyses. PGs most notably depart from scientific norms by virtue of their nearly-indiscriminate and unrelenting exploration into all potential research leads: PGs follow-up on chance anecdotes, self-test unproven treatments, and risk early dissemination of uncertain findings. In several cases, these dogged efforts led to the successful uncovering of new disease trends. In conclusion, PGs' methodological liberties might ironically be enhancing their research success. By maintaining open minds and a willingness to take risks, PGs cast a wide net and ultimately fill an important research niche, carrying out some of the initial high-risk, start-up stages of biomedical research.