Our Health Data Can Save Lives, But We Have to Be Willing to Share

"While it is possible to anonymize data, it’s perfectly possible to deanonymize it too. Many of the most transformative uses of healthcare also don’t allow for the data to be anonymized–there’s no point in identifying the perfect medical trial candidate if you can’t contact them.

So while more than 80 percent of US hospitals and doctors have an electronic medical record (EMR) system, ultimately few research projects take advantage of this wealth of data because of the huge amounts of red tape surrounding patient consent.

This has resulted in a growing push to encourage patients to donate their data for the public good. The Personal Genome Project aggregates donated genome, health, and trait data, while Open Humans allows people to share data from everything from wearables to health apps with projects of their choice. Both are run by the Open Humans Foundation.

PatientsLikeMe lets people connect with others suffering similar problems to them for support and health advice, but it also offers researchers real-time patient generated data on disease progression and treatment efficacy. Others have suggested a model closer to organ donation to encourage people to donate their medical records after their death.

Encouraging widespread adoption of data donation faces significant hurdles though, not least how to incentivize donors to come forward. Datadonors, another service that sought to aggregate donated health data, closed in December after failing to attract enough users. Founder Dani Nofal told me they focused too much on the back end and too little on communication, but the source code is on GitHub and he hopes someone else can take the idea forward."