Who owns your medical data? Are you happy for researchers and policy makers to have access to your records, and content they have been sufficiently redacted so as to render you anonymous? And is that even the point – it is still your data after all, isn’t it?
The answer it seems, is not so clear cut. As HBI Deals+Insights members can read this week, the European Commission is proposing a legal framework to regulate the sharing of health data across the EU.
The financial benefits to the sector are undeniable, with estimates saying €11bn over 10 years could be saved. And the medical benefits are undeniable. The pooling of data for research and policy making could be invaluable.
But the argument doesn’t stop there. Electronic medical records and the increasing ubiquity of apps and wearables raise questions of ownership.
As one source told us recently: “In five years you may see a lot of graduates and students adding to their incomes by commercialising their data, but this is also a tricky area to navigate in terms of ethics.”
Currently, the law is, at best, blurry – and it varies from country to country. Risks include the possibility of discrimination, and solutions include a requirement of consent being baked into the system. Many will be reluctant to see their data used for commercial gain. But what if it also benefits society as a whole?
There has to be a way to ethically share clean, anonymised data – and for those who wish to opt out to do so, but framing the legislation to do this will be extremely tricky. We wish the Commission’s lawyers good luck.We would welcome your thoughts on this story. Email your views to David Farbrother or call 0207 183 3779.