Dr. Deborah Peel, the founder and Chair of Patient Privacy Rights, recently gave a TED talk, “Designing Technology to Restore Privacy.” You can watch it here:
Her talk may feel somewhat overwhelming or even depressing, as the sale and non-consensual use of our health information is rampant – and legal. So what can we do? We need to restore privacy controls and protections that were stripped from HIPAA before it went into effect in 2003. We need to be more aware of which of our providers are selling our data. And we need to stop just accepting the status quo.
One thing that I think we should also do is start publishing and exposing more of the entities that are mining and selling our health information. Dr. Peel’s talk refers to a document she found, but she doesn’t name names in her talk. I think it’s time to name names.
Have a comment? Use the comments section below or sound off on Twitter, using the
#MyHealthDataIsMine hashtag.
Dr. Peel’s passionate talk is authentic, genuine and important to all of us but would have come across as more credible, urgent & actionable for the audience had it been filled with actual statistics, facts and reference-able sources. A positive & clearer path forward, beyond tweeting, for the audience to act on would have provided a more inspiring conclusion. Dr. Peel continues to have FairWarning’s support & thanks to all she does for the industry, and patients.
So we agree it would be helpful to name names and give some actual facts/stats. I asked an owner of a medical lab what he knows about labs selling patient data and he replied, “Absolutely nothing. Who would dare?” So there’s a lot of room for educating….