Exploiting healthcare data is a hugely sensitive subject. While the supporters acclaim major advances in public health, detractors condemn invasions of privacy. The debate is raging in France, where the government is inviting the general public to submit their ideas on the subject. Meanwhile, an incident in the UK whereby a Google-owned company got hold of the data of over a million patients is sure to fuel the anti-open data contingent.
Open Data in healthcare has made its first tentative steps in France. One major manifestation of this is the creation of a public database of medication, enabling both healthcare professionals and members of the public to look up the references of any drugs marketed in France in the past three years. For example, by running a search for “Aspirin’’ on the Ministry’s website, you can find a dozen fact sheets on all the products containing aspirin.
The bill for setting up the National Healthcare Data System was passed in France at the end of 2015 as part of the new healthcare law. This is another milestone; this database combines all the databases of the equivalent of the national health service and hospitals’ IT systems, including information from over a billion prescriptions, 500 million treatments and procedures and 11 million hospital stays a year. The big open data debate also concerns patient data and electronic medical records.
“Sharing healthcare data: what are the benefits and conditions? ’’ was the theme of an initiative launched by the French Ministry of Health, whereby members of the public are invited to submit their ideas until 20 June. So far, 277 ideas have been submitted, a summary of which will be published this summer. These include better coordination of care, increased security, anonymity, the need for patients’ permission, etc.: in other words, there is an interest in opening up healthcare data, tempered by concerns about confidentiality and the potential use of data for commercial reasons.
Under-utilisation of healthcare data in France
The Court of Auditors is a fervent partisan of Open healthcare Data in France and drafted a report outlining its support to the Assemblée Nationale (parliament). Whilst healthcare data offer a “wealth of advantages,” according to the report, it laments an “under-utilisation of data” by health insurance organisations, a lack of openness – even rivalry – between the various organisations, over-complex procedures and the reservations of the CNIL (Commission Nationale de l'Informatique et des Libertés, an independent French administrative body in charge of ensuring compliance with data privacy law). The report recommends, among other things, simpler, more flexible procedures, better governance of access control, and the inclusion of unstructured data.
A growing trend
An example of the rise in open data in the healthcare sector is Celtipharm, which recently changed its vocation – and its name: it’s now called OpenHealth Company. Originally specialising in services for marketing pharmaceutical products, this French company recently branched into data analysis, not only for marketing and medical/economic purposes, but for public health reasons, according to the MD. In France, OpenHealth Company is a direct competitor of IMS Health, the world leader in collecting and providing healthcare data.
The Google controversy in the UK
Here’s a recent incident that is sure to give the Open Data detractors ammunition: DeepMind, Google’s Artificial Intelligence division, accessed the data of some 1.6 million patients in UK hospitals. As part of a collaboration to develop an app for clinicians treating kidney disease, DeepMind and the NHS (UK’s National Health Service) are suspected of exchanging much broader and more confidential data from all the patients at three London hospitals, not just kidney disease patients.