This past Tuesday, former CTO of HHS Susannah Fox ended her blog with an incredibly important point:
“The elephant in the room is that most people don’t WANT to engage in their health, much less with their health data.”
Nevertheless, she still believes...
“...we should all be working toward freeing the data and letting people decide whether to engage with it, building the infrastructure and tools that allows someone to wake up one day (maybe because of a life-changing diagnosis) and say, “Yes, I’m ready. Now, how do I get my data?”
Most industries today already understand this modern expectation. Regardless of its popularity or demand, between Comcast, Netflix, and Amazon I can watch pretty much any movie ever made, whenever I want to. For example, I don’t think many people out there are interested in rewatching the 1985 cult horror film Ghoulies, nor the span of low-budget sequels that followed, but nevertheless those movies are available for me to stream instantly (which I did this past weekend to the chagrin of my wife). Media companies learned long ago that it’s better to make everything available, just in case. The more digital content accessible, the happier their consumers.
What’s frustrating about healthcare is that not only is there no infrastructure in place to release all of our personal health data, there are few institutions even interested in providing these tools for patients. As I’ve mentioned in previous blog posts, the reason hospitals and other HIPAA-covered entities can get away with such an outdated model is because “most people don’t WANT to engage in their health, much less their health data.” There’s no pressure on them to comply with current regulations, or provide a customer experience in line with modern expectations.
But what would happen if a million people woke up tomorrow and decided they did want it? Hospitals across the country would be woefully unprepared to handle the volume. That day is coming, however, so it’s up to all of us to make sure our health institutions are up to the task by putting pressure on them now. Our data needs to be easily accessible, just in case we do want it someday.