Happy 20th Birthday, HIPAA. You are still misunderstood…
Do you know what HIPAA stands for? It’s the Health Insurance Portability and Accountability Act. Go to a doctor’s office, and it may cited as a wall keeping you from your record. Yet that’s not correct, and HIPAA just doesn’t get any respect.
The P means Portability. Meaning, being able to port or connect or carry health information from one place to another. That one place so important to people is THEM. Getting access to THEIR notes – including clinic and hospital notes written by doctors and nurses.
It’s great to see that through the OpenNotes project, 10 million can access to their clinical notes online. That would be through secure patient portals. It’s mostly larger systems, like the VA and Mayo and Beth Israel Deaconess. There’s a lot of room to move, though, since people largely go to smaller places or go to multiple places to get their care. So there’s a lot to do. If we look at the map of where we are today, there’s lots of pockets lacking note sharing. Sadly to say, Maine, my own state is one of them.
I’m having formal and informal discussions, and really have just started the conversations. As more evidence is coming in, people will take more notice of it. And since Maine is a great place to collaborate on quality (Quality Counts) and consumer engagement (GetBetterMaine) and electronic information sharing (HealthInfonet), I couldn’t be more pumped to get this party started!
The mission is simple: add notes to patient portals, no cost for sharing, have people read them, partner with clinicians!
I’ll be sharing evidence on experience and impact of sharing notes. There’s been recent papers on the effect of notification to go look at notes, recall to refill medications, and some fascinating work coming out of Portland, Oregon, on the impact in mental health – from patients and clinical team members. Stay tuned!