Data Into Dollars: MedWatcher Is Crowdsourcing Reports Of Medical Side Effects
Severe headaches. Hemorrhaging. Ectopic pregnancy. These are just a few of the adverse reactions women were reporting for an implanted birth control device — reporting it in a Facebook group for patients experiencing side effects with this form of birth control.
These same women also disclosed complications communicating their experiences to the Food and Drug Administration. The system the FDA uses to collect patient-reported events is complicated, time-consuming, buggy, and not mobile-friendly. And, if you’d gotten through all that, it could take up to a year for the report to be made public.
As an easier way for patients and doctors to track and report the side effects of medical devices, drugs, and vaccines the FDA partnered with Epidemico to create MedWatcher, a platform which allows anyone to report an adverse event, relay it to the FDA, and instantly share it with the public. The process helps people better understand the potential risks of medical products and helps keep doctors and government officials informed.
For open data proponents, MedWatcher is a win-win-win. The app is collecting data for the government, crowdsourcing previously unavailable data which are made public, and leveraging the FDA’s open data to validate their own findings.
When I spoke to Carrie Pierce and Chi Bahk, project managers for MedWatcher, they said between the app and web-version over 900 non-duplicate reports of adverse reactions have been added to the FDA’s datasets. Adding to the volume of reports is critical according to Pierce, since drug and device investigations are tied directly to the “ratio of adverse events reported to products sold. So when people don’t report issues, that flag isn’t triggered.”
Through MedWatcher, consumers can track the drugs and medical devices they use and be alerted to any new patient or governments report on those products. Bahk says there are currently 8,000 registered MedWatcher users who get notifications if someone reports an adverse reaction to a product. “All the reports are de-identified and opened as free text for anyone to access.”
MedWatcher has also conducted studies to validate the legitimacy of patient-generated data. For example, in April of this year, they compared adverse medical events detected on Twitter with data available through the FDA’s Adverse Event Reporting System. The study concluded that events identified on Twitter are similar to reports received by the FDA.
Comparing patient-reported events to overall FDA data is important says Bahk to counter any skepticism there might be about MedWatcher’s methods. “What we have found, is that patients are very good at identifying what’s happening with their own bodies. And we believe this will support the larger trend toward a patient-centric approach to healthcare.” adding, “All patients’ voices should be heard.”