- security in medical devices
- auditing in electronic medical records
- medical record dissemination and privacy
In particular, a key challenge in healthcare coming up is how patient information is going to be handled in heath insurance exchanges (HIE’s) that will be created as part of the Affordable Care Act. The real question is what is the threat model for health information : hackers who want to wholesale health records, or the selling of data by third parties (e.g. insurance companies). Matthew Green from Dartmouth discussed implications of the PCAST report on Health Information Technology, which I will have to read.
The most interesting part of the workshop was the panel on de-identification and whether it was a relevant or useful framework moving forward. The panelists were Sean Nolan from Microsoft, Kelly Edwards from University of Washington, Arvind Narayanan from Stanford, and Lee Tien from the EFF. Sean Nolan talked a bit about how HIPAA acts as an impediment to exploratory research, which I have worked on a little, but also raised the thorny ethical issue of public good versus privacy, which is key to understanding the debate over health records in clinical research. Edwards is a bioethicist and had some very important points to raise about how informed consent is an opportunity to educate patients about their (potential) role in medical research, but also to make them feel like informed participants in the process. The way in which we phrase the tradeoff Nolan mentioned really relates to ethics in how we communicate the tradeoff to patients. Narayanan (famous for his Netflix deanonymization) talked about the relationship between technology and policy has to be rethought or turned more into a dialogue rather than a blame-shifting or challenge-posing framework. Lee Tien made a crucial point that if we do not understand how patient data moves about in our existing system, then we have no hope of reform or regulation, and no stakeholder in the system how has that “bird’s eye view” of these data flows.
I hope that in the future I can contribute to this in some way, but in the meantime I’ve been left with a fair bit to chew on. Although the conference was perhaps a bit less technical than I would have liked, I think it was quite valuable as a starting point for future work.