My Medical Records

Medical records need disrupting. I’ve made little quips here and there on Twitter about this. I should own my medical records and they should be shared with physicians and their facilities as needed.

Why? In the words of Joe Biden “None of your business.â€ Seriously though, why should our medical records be locked in a system we cannot access? We can learn something from Twitter, Facebook, and Google. We should own our medical recordsÂ — via an open standardÂ — and allow doctors and hospitals to ask our permission to see them. Much like friending someone on a social network. The doctor looks me up, asks if they can see my records, I get a message saying the doctor would like access to my records, and I choose to let them or not. My choice, my records.

Case in point. I have a problem with one of my knees. In 2004 I had surgery to remove cartilage, a bone spur, and some arthritis from that knee. It was a fantastic decision. It made my day to day life much better. Fast forward to 2017 and that knee has become an issue. It hurtsÂ — constantly, it swells, on occasion it fails causing me to stumble, and it’s unstable. I don’t trust it and I’m tired of the constant pain it causes.

Getting to the point. I made an appointment with my family doctor to discuss the problem. Before going I tried to locate the doctor that did the surgery back in 2004, but she’s moved on. I contacted her old group to see if they had my records. Nope. All they have are records dating back to 2006. Ok, no proof of the surgery and more importantly I don’t have a record of what was done to the knee. Swell.

I visit my doctor last week. Tell her what’s going on. She puts the knee through some tests and understands there is something going on. Great. I explain there is a history here but I cannot tell her exactly what was done. My only explanation is I had surgery in 2004 to do X, Y, and Z. But I don’t know the exact terms nor do I know where the cartilage was removed or how much.

She orders and x-ray and while she’s doing this she explains she’d like to do an MRI but the Insurance company requires she order an x-ray and order physical therapy before doing the MRI. What?

She knows it’s wrong but her hands are tied. She can’t see what’s already been done to the knee and to top it off the insurance company has it’s checklist she has to fulfill before she can order what she really needs.

Now I get to go throughÂ — what I imagine will be quite uncomfortableÂ — physical therapy because my records are lost.

I have to believe if a service existed, based on open standards, I’d be able to share these records with my doctor so she could see exactly what was done in 2004 and the insurance company would also have evidence physical therapy didn’t work back then so why not go right to the MRI and avoid the expense of the x-ray and physical therapy.

This is broken.

I know the EHR is only a tiny fraction of our dated system but I’d like to have a complete medical history. It’s my history.

To fix this will take eons. Medicine is so far behind when it comes to technology. Look at systems like Epic. It is seen as a leader in its field, but it’s a closed system. How does that benefit anyone but Epic? It doesn’t.

We need an Open API with services offered by many providers that are patient driven. Allow data to move between systems. Don’t make your money by holding patient data hostage. Make your money by building the better service.

Hopefully, someday, we’ll have a Single Payer System in America. As part of that system it’s my sincere hope good patient outcomes becomes the center of attention and data is allowed to flow between systems at, at least, national level.

Someone please disrupt this industry with an open system.