Fed Up With Awful Health Software — Let’s Build Something Better Open-Source

At the end of July, for various reasons, my wife and I had to change health insurers from Kaiser Permanente to United Health. Given that Kaiser has its own doctors, that also meant changing provider organizations, in our case to Palo Alto Medical Foundation (PAMF), which is a Sutter Health affiliate. Which means we needed a means to get 16 years of health information shipped from Kaiser to PAMF.

So on-top-of-things-guy that I am (or so I thought), I went to the Kaiser medical records office in mid-July to get that process started. It goes without mentioning that the bureaucracy is of course horrendous, their forms reflect a different business process than they apparently have but they either don’t understand that or pretend otherwise, and I actually had to show up in person and stand in line three times, and in several other places besides, and fill out a total of 10 forms I think, in order to just request for a copy of all records Kaiser has about my wife, me and our son.

I was making it very clear that I needed those records asap so I could continue without interruptions with my allergy shots, and we could continue some long-term medications. They said 10 days. (And they say us software developers are bad at estimating.)

To make the long story short, at the end of October, we finally had most of the information. I had to resort to threatening some people repeatedly, and make a not insignificant number of trips back in again, and to other places where Kaiser record keeping apparently doesn’t know it keeps records (particularly if they are electronic, and stored in their main Health Connect system. The mind boggles…).

What we finally got was a stack of paper (no argument there for the earlier years where computerization wasn’t as advanced), X-Ray etc. files on CD, and separate CDs with the electronicly available medical information.

(The CDs were password-protected. With our birth dates as sole passwords. The mind boggles some more.)

Finally: insert CD. Open the electronic files. We made it!

And it is PDF.

Pages and pages and pages of repetitive PDF with no index, no organization, and 95% boilerplate. I tried to start reading. It simply not possible. You can’t find anything. It’s unusable. It can’t be parsed by computers (it’s PDF) but it also can’t be parsed by humans.

The best part: PAMF, where we are going, has *the same medical records system* (Epic) that Kaiser has, from the same vendor. And all we get is PDF which has no hope of being entered there.

In practice, I took my medical records to my new doctor by me carrying a binder, with paper notes, that I took over the years whenever I went to the doctor. This binder has been a much better record of my health than anything we got from Kaiser, electronic or otherwise. I doubt it would be any better if we went from PAMF to Kaiser. The paper was timely (August, and September, and October — before the Kaiser stuff arrived), much more usable (ordered) and it appears, more complete.

This situation is insane.

I’ll never ever depend again on some health care organization maintaining my health records for me.

So decided to put together a crude medical records system for myself and my family. It’s worth it for me even if we are the only people who are ever going to use it. My plan is to grab InfoGrid, which makes rapid development of web apps based on a rich graph data foundation really simple, start with its usual application template, and incrementally add stuff. All open-source, of course, anybody who’s just as upset at this as me can use it, and who knows maybe some people might want to contribute.

Innovatively, I’m going to call it MyHealth.

I’m thinking of basically starting to read through that awful Kaiser PDF, and as I encounter useful information (which I hope is in there somewhere), augment MyHealth’s model/schema and the GUI right then and there and enter what I find. And keep repeating that till I have the important bits recorded and analyzable.

I’d like to see a graph of my blood tests results or blood pressure over time, not just the ones taken by one doctor. I’d like to add my own blood pressure and weight measurements. I’d like to add fitness info, and track when in the season I started taking allergy pills and how long and how well they worked. Maybe there is a way of hooking up FitBit info, or info from the very cool Jawbone UP.

Not sure where it will go, but given I have to read through the awful Kaiser PDF anyway and summarize it, I might as well put it somewhere where the info might be usable.

I’m planning to document my technical progress over at the InfoGrid blog. It’s just going to be a little side project for the evenings, but I wouldn’t expect it to take too long to be useful.

So, health software industry, here’s one helluva unhappy customer who is not taking it any more that your systems cost gazillions and basically don’t work, and who is creating his own. Take that!