PatientsLikeMe, FDA explore how patient-generated data could help event reporting

Online patient community PatientsLikeMe, which connects patients with different symptoms and conditions and collects patients’ voluntarily submitted data for research, has teamed up with the FDA on a research study that could point the way toward a new channel for patient-generated health data for the agency. The study was recently published in the Journal of Medical Internet Research.

Right now PatientsLikeMe collects data for research purposes, but codes it using the the Medical Dictionary for Regulatory Activities (MedDRA), the FDA’s coding framework for Adverse Event Reporting (AER). That’s done in order to make the database more useful and searchable for researchers.

In this study, however, PatientsLikeMe wanted to see if that coding was close enough to make...