A year ago I lost my grandfather to Alzheimers, at least technically it was Alzheimers. In reality, you can trace his downturn in health to a simple infection that was compounded ultimately by a lack of interoperability; ironic since at the time I was serving as the Principal Deputy National Coordinator for ONC, focusing all of my time on nationwide interoperability.
More than once in the weeks leading to his death, I was on the phone with my mom, his primary caregiver, trying to explain to her how to ask for his medical records, how to make sure they got shared, and frankly apologizing for failing to do more to make interoperability a reality for all use cases. At one point I even had to talk to the medical records office and explain HIPAA and what it allowed, only to find out this particular hospital didn't make the patient portal available for data from the ED.
Leading up to his passing, my grandfather bounced between his memory care facility and the ED 7 times in 7 days, each time having little to no information shared between the hospital and his nurses/aids at his home. Certainly, no information was shared electronically. His final trip to the ED sent him to a skilled nursing facility for rehabilitation prior to returning to his memory care facility, where once again, no information was shared between facilities; ultimately leading to a stroke and his passing when the memory care facility wasn't informed of the need to taper him off of the medications the skilled nursing facility had put him on.
While I don't know if having all of his health information or care transition documents would have kept him alive, I can't imagine it would have hurt.
I share this personal story because this experience, and many others my family has had with interoperability or the lack thereof, remind me that at the end of the day achieving interoeprability isn't really about all of the cool things you can do with the data when it's made liquid. It isn't about the cool, new tools and dashboards that are focused on analytics and population health. Don't get me wrong, those things are important. But really, interoperability is about people.
I am passionate about health IT because when we do it right (and yes I have seen it done right) it makes a tangible difference in the lives of real people. People who don't want to spend hours in a doctor's office or hospitals because the doctor needs to read through a stack of paper records that they received at the appointment or get the same test done for the hundreth time. People who don't want to carry a stack of paper records from office to office, hoping their doctor reads them.
Fighting for nationwide interoperability and health IT that works well is hard work; there are barriers and challenges galore, and we can all get worn down from time to time. But it is a worthwhile fight because when we achieve widespread interoperability, I firmly believe we will improve the lives of every patient and caregiver in this country, because no one will have to experience a failure in care because their health information wasn't available.