Re: Imagine the implications of non de-identified data across HIEs
Thanks so much, @RightPatient, for your kind words. It's the kind of article I enjoy writing because it's a topic I think we all have to think about. It is, after all, affecting us and will continue to do so; if we don't figure out the details soon, the status quo will continue and I'm not so sure that's a good thing.
Your question about HIEs is intriguing. As far as I know, deidentification is deidentification and the lack of standards crosses all lines -- from apps to HIEs to EHRs and beyond. So the same confusion that I (hopefully) described in this article similarly occurs in health information exchanges and electronic health records -- with far more dangerous repercussions, since these databases DO contain both Social Security numbers AND real patient data, such as names, addresses, ages, and potentially embarassing information including STDs, drug abuse, contagious diseases, alcoholism, or extra-marital affairs. However, HIEs and EHRs ARE covered by HIPAA (and perhaps other laws regarding privacy?), because of this information, so I would think they must therefore meet the government's deidentification guidelines (which I linked to in the article). These comments are just my musings on the topic; I don't know and have not spoken to anyone about this aspect of deidentification and anonymity. I think I will do some research and follow up in another article at some point, if you think that's warranted?
For sure, though, the data within HIEs is deidentified and mined. There are startups founded specifically to mine healthcare data from various sources, differentiating themselves on their turnaround time (as in the newness of their data), the variety of data, and size of their data pool, for example.