I spotted a fascinating article in today’s US print edition of the Financial Times. It was titled, “Patients take control of their medical data”. Here is the quote that almost took my breath away:
“It [a new data platform collecting medical data] now has 1,200 users on its platform and has entered into research partnerships with pharma and health companies including Johnson & Johnson and Medtronic, as well as the Food and Drug Administration, the US medicines regulator.”
And the next paragraph:
“For Richie Etwaru, the solution is to offer people legal title over their data.”
That last part is awesome. While privacy companies and regulators in the US waffle on about how to cope with GDPR and other privacy issues, private firms are quietly building up treasure troves of data that have strings attached. Those strings provide an ‘out’ clause for the consumer (that’s you and me) that creates the raw data. On their (our) behalf the platform owner licenses the use of consumer data for a fee, partly reimbursed to the consumer.
Another company, Hu-manity.co, has so far collected data from 16,000 people across 70 countries. Such firms represent the sovereign individual sticking their nose up at big government and big firms with innovation. Another feature of this new model is that additional options are offered where individuals may give permission to the platform-company to identify themselves uniquely to the healthcare data consumer. This avoids the challenge of coping with privacy across aggregated data from multiple sources, which is what pharma and healthcare firms have to cope with now.
The article explains how in Oregon a bill is being considered that would require data owners’ signature to permit re-identification of their data for use in healthcare. Such a bill infers ownership rights of the consumer/producer over the data they create. This is quite an interesting development.
Another question asked is how much is such data worth? Does it have a price independent of use or leverage? Are all patient data equal? Is data from a healthy person as useful as data from a sick person? Once the lawyers wise up, they will get in board of the data-as-an-asset game and realize there is far more money for them in the game than arguing against it.
These are treasure troves of data, and practices, large firms should not ignore. So how will the large firms react to this rogue bottom-up effort? My guess is that they will first seek regulatory relief with government lobbying (partly why our current ‘capitalist’ system is held back). Then if that fails the larger firms will seek to acquire the smaller start ups in order to shut them down. Either way, the lawyers are asleep at the wheel it seems all the while new innovation is moving forward and creating new data ownership opportunities.