Episode 1 – This is why privacy matters in digital health

 By Karsten Stampa, COO / CFO of healthbank


“Who am I that people or companies might be interested in my very own personal data?”  is one of the most common questions that people justify their activities when they feed their thoughts, comments and ideas into social media platforms like Facebook or Twitter.

Their main focus is, of course, to connect and stay connected with people, friends & acquaintances. However, at the same time they tell the world their opinion, like or share posts of their friends, show their latest running distance or even share products they may be interested to buy. And this is where it gets interesting for companies and this is where those people who feed the system get in the focus of interest: their data help data giants like Facebook or Google to sell targeted advertising. It’s never been easier to tell whether a single user comes from the working class, earns some middle income and is particularly interested in running shoes. And it’s never been easier for example for a shoe producer to advertise his products to this user. So far so good. The problem that we see here, though, is that the user very often does not even explicitly agree that his or her data is being used for such targeted advertising – the simple use of the digital platforms imply such consent. And this is where it starts to get shady. This is where privacy in the digital world ends.

Cambridge Analytica & Co: how power over data ends privacy
A few examples have shown the world very recently, why privacy in the digital sphere matters – and what may happen when companies that hold data on your behalf share them without your explicit consent. The most likely most famous example in 2018 is the Facebook & Cambridge Analytica scandal. In a research project attempt which ended in the largest known leak in Facebook history, Facebook allegedly shared personal data of tens of millions of its users with a researcher who then gave the data to a company called Cambridge Analytica, who in turn worked as digital consultants to the Trump campaign in 2016. Contrary to the shoe producer mentioned above, Cambridge Analytica was rather interested in the psychological profiles of American voters to political campaigns thus acquired private Facebook data to actively provide “targeted advertising” towards a voting campaign of a candidate called Donald Trump.

What does this have to do with personal health data?
An American presidency campaign of course does not have much to do with health – except for a few people who may have higher blood pressure than usual due to the outcome of the election. The breach of data privacy, however, affects many aspects of digital health, which I wish to highlight in three different examples:

1. Facebook and research with patient’s data
Shortly after the Cambridge Analytica scandal, Facebook allegedly paused a research project that asked hospitals to hand over patient data, in which Building 8, the branch of Facebook involved with long-term experimental projects, asked hospitals to share anonymized patient data “to blend hospital data with social data. The Facebook data, which would highlight users’ social ties and loved ones, could theoretically inform medical professionals about best-care practices.”
Of course, Facebook only has good intentions as the project was supposed to figure out if this combined information could improve patient care. At the same time, though, it raises a lot of questions in regard to data privacy and an explicit and well-informed consent by the patients to use such data for research.
As of data privacy concerns, the source states: “Though Facebook asked for the data to be anonymized, it reportedly wanted to implement cryptographic techniques that would allow the researchers to match data sets. This project would essentially hand Facebook even more personal data, this time containing personal health-related information.” The article cited does not state if patients ever gave their consent to use such data – however, I believe they didn’t. Otherwise Facebook wouldn’t have had to pause the project, would they?
(source: https://www.fastcompany.com/40555073/facebook-paused-a-research-project-that-asked-hospitals-to-hand-over-patient-data )

„Stay tuned for tomorrow’s episode 2 of this blog post and find out why supposedly anonymous sports data
shared from a fitness app can still be traced back to an individual runner!”

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