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Vishal Gulati

‘Ownership’ distracts people from the more important concepts in health data, ‘access’ and ‘control’

May 28, 2016

On the 26th of May, I did a keynote on future of healthcare at the Charité Entrepreneurship Summit 2016 to an audience composed of investors, entrepreneurs and healthcare professionals (Charite Hospital is the leading centre of excellence in Berlin and plays an important role in education and healthcare entrepreneurship in Germany).
In the panel that followed my talk someone raised an important question about data ownership.

whom belongs the data? seems to be a Google question .. @jensredmer#ChariteSummit
— Michael Greth (@mysharepoint) May 26, 2016

The question was directed more towards another panelist who worked at Google (and this is a typical question that is thrown at Google employees). Of course, the patient /user ‘owns’ the data was the answer as it always is from all those in power. I think this is a missed opportunity. The way I address this is slightly different. I think we should stop focusing on ownership if the ownership doesn’t give you control. In healthcare systems around the world owning your health data is meaningless because in most cases you have no control or even access to it.

Digital goods (such as your health data) do not fall neatly into the ownership, access and control framework which we is designed mainly mainly for material goods. Owning a car is different from owning your health data. I don’t know who ‘owns’ financial transaction of my credit card but I have ‘access’ to it. I have some ‘control’ over it e.g. it is not publicly available but credit rating agencies can also have access to it. But overall, I am satisfied with the level of access and control of that data without owning that data. On the other hand, I am not satisfied with the level of access or control of my health data despite ostensibly being a owner of it.

So, here is my 2 pence worth. ‘Ownership’ of your health data is a red herring. Stop chasing it. Focus on access and control. We need a lot more of both.


Originally published on May 28, 2016.