Thoughts on the Health Privacy Summit (Day1)

I couldn’t make the full day of the 2014 International Health Privacy Summit, but I was able to listen to many of the early sessions online.  I settled in for the last two sessions in person, made it to the Brandeis award reception, and am settled in to process the events of the day.  I’ve been to plenty of conferences, and what struck me the most about this one is the tremendous utility of all of the content – not just practical utility (e.g. “I can use that in my job!”), but the thoughtfulness of the content and its ability to promote real and meaningful dialogue about truly meaningful issues.

There were several takeaways. The first, on the heels of Health Datapalooza, is fairly obvious.

1) Data is going to drive transformation in health outcomes, healthcare, research, treatment and more.
2) Patients, providers, vendors and the government will all need to be significantly engaged in order to assure that privacy and integrity is maintained as we experience the transformation above (Dr. Karen DaSalvo, National Coordinator for Health IT noted that HHS is regrouping, so to speak, with a particular emphasis on issues of patient privacy, and I applaud their efforts!).

What is particularly striking is that, while many would consider the Electronic Health Record at the hospital or doctor’s office the locus of health information that needs to be protected, we might do well to be just as concerned about health data that can be gleaned from our web searches, apps, cell phones and the “internet of things.  Several examples that were particularly striking were:

1) The individual who searches for data on diabetes can be flagged as “diabetes interested” by a potential insurer, or even a potential employer, even if the search was related to the health of a friend or family member! (imagine what they might infer about our searches when we search other symptoms!).
2) Someone who searches for marriage counselors is automatically at high risk for credit issues and debt default, and credit card companies can flag these folks – hiking interest rates or canceling credit cards preemptively, before the financial crisis hits.

… and the list goes on.

The kind of information a  “data broker” might be able to provide a potential employer, a financial partner (or anyone else) is very important.  If you aren’t curious about what kind of information these strangers on the internet have about you, you should be.  This isn’t paranoia, this is common sense – businesses are going to be making business decisions about us based upon data, and it isn’t going to be a human being looking at these data points and asking us to explain, it’s going to be a computer combing through the data points and then executing a decision based upon an algorithm without human input … and we won’t have any say in the matter.

… that is, unless there are rules developed that govern how our personal data can be used in ways that impact our lives.

If we learned anything from the Snowden revelations, it’s that data is king – the people with the data have the power.  If we don’t have a say our data is used, then we will certainly become “weak” in a 21st century sort of way (though the effects will perhaps be subtle, and we might not even realize it … we will just wonder why we were denied a job for no apparent reason or were refused a loan when our finances seemed solid!).

Privacy matters.