Category: Privacy concerns

Opening keynote today was Adam Tanner, regular PPR attendee and author of forthcoming Our Bodies, Our Data: How Companies make Billions Selling Pir Medical Records. If today’s presentation was an indication, this will be a cracking read and one can imagine a TV series spinning off, covering the emergence of large data processing of medical records originating in early student research of sales in pharmacies, gathered by hand. Throw in obfuscation of origins of the early company leaders of RMI, including a Nazi escapee who reinvented his own history in the US, and you have a potboiler of history, industrial development and the milking of huge profits from personal health data. Due out Jan 2017, I’ll be reporting more when I get it.

Did PCORI tell us that informed consent is impossible in the age of big data?

The mid morning panel is examining the role of AI in the use of health data involving Christo Wilson from Northeastern and Adrian Gropper. Interesting issues raised about how ready are we to adopt processes whereby individual’s health records are mined and analyzed to identify health concerns that are brought to people’s attention once they reach some trigger point? More, what do we do when we end up relying on IBM Watson more than a human medical expert to diagnose our conditions? Do we license algorithms? Who is watching those who will use the tools to watch us?

Each year I attend the Patient Privacy Summit in DC and it usually takes less than five minutes from an opening speaker for me to learn something new. Today we are quickly informed that the Fitbit apps (and their like) capture all that movement data you provide and share it with multiple third parties (18 in one case) all trying to piece together records of your life. As are retailers like Macy’s who in an effort to compete with the analytics available to online retailers, are using face recognition software in their store to identify shoppers and track their behavior and purchases.

Joe Cannataci’s opening keynote is remarkably rich in quotes about privacy and data capture that predate current discussions by decades but which strike to the core of current debates. Without privacy, he argues, we are shorn of a protective cloak and become amenable to the manipulations of others. Informational self-determination is key to our future. And he also argues we need more understanding of the psychology of privacy as much as the law and technical aspects — clearly an iScholar at heart. His stunning conclusion is that in some countries now, a person has more privacy when dead than they do when alive. And with China embarking on a major social credit system aimed at ranking every citizen in order to ‘improve’ society, you wonder why there seems to be so little serious information scholarship on privacy.

The following panel on real world experiences of health data being shared is heartbreaking. A very brave woman shared how her company, learning she had cancer, made her working conditions a living nightmare, trying everything to get rid of her from the payroll. You think we live in a civilized world with worker protections? Get real. Individuals facing these types of challenges from employers feel powerless and obviously do not have easy access to legal representation. Harrowing personal stories.

Further interesting snippets:

• If someone knows your birth year, zip code and gender, they can identify you with >60% probability
• If you rate three movies you rent on Netflix, your identity can be determined with 80% probability
• Even after opting out of data sharing, your data is often still shared.

What is equally disturbing about much of this is the fact that these findings have been known for some years yet few people seem aware or to care.

More updates to follow – but if you are in DC today and tomorrow, this summit is free to attend, join us at the Georgetown Law Center on New Jersey Ave.