My Life On Drugs

It all started with eczema and dermatitis and the grade school embarrassment of odd rashes and dry skin in awkward places. Then it was asthma and the embarrassment of multiple inhalers and having to visit the school nurse to get my pills. And then it was an unknown sneeky mystery disease which, after numerous misdiagnoses, was determined¬† (via colonoscopy) to be Crohn’s disease. Crohn’s is a whole new level of embarrassment. And that’s where it ends, for now. I probably have plenty of time to develop more embarrassing inflammatory diseases. We’ll see. (Click the image to enlarge.)

An Infographic illustrating the number of drugs taken in a year.

My Life On Drugs data visualization took a long time to make. The data collection is ongoing but I want to release something. The most challenging thing so far is the data organization. But what’s nice is that the next time I fill out forms which ask for my medical history I just have to show off the visualization. Easy. It’s clear, concise, and tells the story of all the medications I’ve taken since childhood. It reminds me of Eric Raymond’s second rule of becoming a hacker – Nobody should have to solve a problem twice. Which in turn reminds me of his book The Cathedral and the Bazaar. Our health care industry is a cathedral. They lock up and control our data. And I promise that institutional control of our data is not good for our health. And we don’t yet really have an analogous bazaar. But we could. And we most certainly should. In the next blog posts in the DIY Electronic Health Record category I’ll go through the process I went through to make my visualization. But be prepared if you want to do it yourself – it’s time consuming and frustrating.

In fact all aspects of getting this data viz done were frustrating. Dealing with medical record requests was a huge challenge. I think I had about 10 different data sources to request from. Waiting for them to arrive is time consuming and then, once you get them, it’s just a bunch of unorganized paperwork. The first thing I wanted to do was make the data searchable. But this proved to be a serious challenge! Even just organizing everything in a spreadsheet was challenging so I’ll share how I did mine. But everyone’s different so who knows what organizational upgrades people will create.

Good visualizations tell a story. And I feel like the one I’ve created clearly reflects my medical history. I’d love to share this with a physician. It’s painstaking to watch them fumble through paperwork to figure out simple things about my medical history. This will bring a little piece of mind and some better communication.

Posted in A Crohn's Disease Story, DIY Electronic Health Record.

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