The causes of digital patient privacy loss in EHRs and other health IT systems

This past Friday I was invited by the Patient Privacy Rights (PPR) Foundation to lead a discussion about privacy and EHRs. The discussion, entitled “Fact vs. Fiction: Best Privacy Practices for EHRs in the Cloud,” addressed patient privacy concerns and potential solutions for doctors working with EHRs.

While we are all somewhat disturbed by the slow erosion of privacy in all aspects of our digital lives, the rather rapid loss of patient privacy around health data is especially unnerving because healthcare is so near and dear to us all. In order to make sure we provided some actionable intelligence during the PPR discussion, I started the talk off giving some of the reasons why we’re losing patient privacy in the hopes that it might foster innovators to think about ways of slowing down inevitable losses.

Here are some of the causes I mentioned on Friday, not in any particular order:

• Most patients, even technically astute ones, don’t really understand the concept of digital privacy. Digital is a “cyber world” and not easy to picture so patients believe their data and privacy is protected when it may not be. I usually explain patient privacy in the digital world to non-techies using the analogy of curtains, doors, and windows. The digital health IT world of today is like walking into a patient’s room in a hospital in which it’s a large shared space with no curtains, no walls, no doors, etc. (even for bathrooms or showers!). In this imaginary world, every private conversation occurs so that others can hear it, all procedures are performed in front of others, etc. without the patient’s consent and their objections don’t even matter. If they can imagine that scenario, then patients will probably have a good idea about how digital privacy is conducted today — a big shared room where everyone sees and hears everything even over patients’ objections.
• It’s faster and easier to create non-privacy-aware IT solutions than privacy-aware ones. Having built dozens of HIPAA-compliant and highly secure enterprise health IT systems for decades, my anecdotal experience is that when it comes to features and functions vs. privacy, features win. Product designers, architects, and engineers talk the talk but given the difficulties of creating viable systems in a coordinated, integrated digital ecosystem it’s really hard to walk the privacy walk Because digital privacy is so hard to describe even in simple single enterprise systems, the difficulty of describing and defining it across multiple integrated systems is often the reason for poor privacy features in modern systems.
• It’s less expensive to create non-privacy-aware IT solutions. Because designing privacy into the software from the beginning is hard and requires expensive security resources to do so, we often see developers wait until the end of the process to consider privacy. Privacy can no more be added on top of an existing system than security can — either it’s built into the functionality or it’s just going to be missing. Because it’s cheaper to leave it out, it’s often …read more