Clinical Data Sharing
The recent “cloud deal” signed between Ascension and Google has raised a lot of discussion and concern over the privacy of patients data – in this case perhaps as many as 50 million patients.
You can get a good sense of the background and details from this piece on CNBC Google’s hospital data-sharing deal raises privacy fears. Dive deep into the detail with Jane Sarasohn-Kahn: Will Technology Cure Americans’ Health Care System Ills (maybe and certainly there is data to support the perception by many that the technology industry is [currenlty] our best hope) and then spare a moment for Eduardo Conrado response available on the Ascension website (not a secret, secured and limited use cases and a focus on delivering improved care especially to the poor and vulnerable)
Not to diminish the concern but this is not shocking news. With the massive shift of data to the cloud and the outsourcing of the management and use of that data to external companies, under a HIPAA business associates agreement. You might not like it but dig into the operation of hospitals and you will find this is going on everywhere. It was a fundamental component of providing transcription services to a hospital as transcription moved from the hospital to outsourced companies and even out of the country.
I share the concern but temper this with a recent comment from one of my discussions
You can’t have personalized medicine without data sharing
Ultimately as Jacob Reider quoting Farzad Mostashari put it
In this case, there is a sense of the trust being broken as the project is described as “secret”. But as you can see in the link to Eduardo Conrado response it was no secret. The use of a name for a project is common to help people remember and link things (and why we started using names for hurricanes and tropical storms). If there was secrecy it was likely for competitive reasons? Ascension and Google notified the world of their intentions in an earnings call but perhaps were reticent to shout from the ramparts until they had something to show for their efforts and perhaps in in part because it can be hard to have an informed debate in our currently polarized society that seems unable to accept or listen to opposing views without descending into vitriolic and personalized attacks – I know I’ve received a few recently from individuals I thought were friends.
Like many of us, Google was probably playing the often provided advice on success
Ask for Forgiveness, Not Permission
There are no simple answers but learning from others can be helpful – the General Data Protection Regulation, or GDPR from the European Union has created a framework to strengthen individuals’ rights to data. It runs slap-bang into commercial interest and many of the business models in use today (If you aren’t paying for it, you are the product) and an economy based on capitalism and as such will continue to create outrage and concern but requires civilized discussion.
TL;dr: Shock to many as the media shines a spotlight on it (for now) and raises important questions on ownership of personal data, how we manage, share and use that data. Can we sustain our focus and interest or will we be moved to the next shiny media target?
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