Tag Archives: medical data

My Device, My Body, My Data


In 2007, after collapsing while rushing to board a train, Hugo Campos was diagnosed with hypertrophic cardiomyopathy, and an ICD (implantable cardioverter defibrillator) was implanted in his chest to track and regulate his heart rhythm. To his great surprise, he discovered that it was very difficult to gain access to the data being generated inside his own body. Today we’re inaugurating what we hope will be a regular series of “QS Conversations” about data access with an interview with Hugo about his long battle for the right to see what’s happening inside himself.

Ernesto: Why does access to your ICD data seem so important to you?

campos_hugo_medx2014 copyHugo: I have a computer with firmware, processor and memory regulating my every heartbeat, wired into my heart, and buried inside my body. I can’t even see it. A corporation in the cloud, located out of state, has a wireless, transparent access to a device that’s implanted in my body, but the only control I have is to unplug the remote monitoring unit in my house to prevent them from getting the data. This creates a very unsettling feeling of not having autonomy. I’m paying thirty thousand dollars for a device, having it implanted inside my body, and then being locked out of it.

Ernesto: Was there something that happened that set you on this path?

Hugo: Yes. For a long time I’d been on my spouse’s health care plan, but when he decided to freelance and quit his job, I couldn’t get health insurance. This was before the Patient Protection and Affordable Care Act. Kaiser denied me because I had a heart condition. Anthem Blue Cross denied me as well. Now put yourself in my shoes. Here I am, being denied access to the device because the system “knows better” and I could harm myself, but now they can’t give me service at all.

Ernesto: You can only get access to your ICD through the medical system, but the medical system won’t take you because you have an ICD?

IMG_1542 copyHugo: Right, so I had to figure out a way to protect myself. I looked at it as kind of an extension of my Second Amendment rights. I’m not particularly pro-gun, but I look at it as the ability to defend myself. If the system was really unavailable, I have to at least be able to interrogate my ICD. So, I went on eBay and bought a pacemaker programmer that gave me full, unrestricted access to my implanted device. I can change its programming, shut it off, deliver therapy, and do as I wish. In fact, it’s the same machine that clinics use. I also went to Greenville, South Carolina, and took a class on how to program ICDs and pacemakers. I thought, “Okay, I may not become a cardiac electrophysiologist by any stretch of imagination, but”–to use the firearm metaphor again–”at least I have a basic understanding of gun safety so I don’t shoot myself.”

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Numbers From Around The Web: Round 10

At some point, we’ve all been frustrated with our experiences interacting with the medical community. This isn’t a big secret, especially here in the United States. Many individuals involved in QS meetups around the world gravitate towards news tools and data sources that let them understand and interact with health-related data in news ways. Whether it’s because of a genuine medical issue or just out of curiosity, examples of tracking and visualizing medical data are always really interesting. With that in mind we wanted to highlight a neat health tracking project this week.

Kenneth Spriggs has Crohn’s disease and he’s been collecting and making sense of his medical records since the summer of 2011. Along with trying to better understand his own medical history, partly to understand what went right and what went wrong, he’s also spent some time creating some really unique and interesting visualizations. Let’s dive right in and see what he’s done!

Medical Lifeline
How many different medications have you been on during your lifetime? Probably not the easiest question to answer unless you’ve been with the same medical system your entire life. One of Kenneth’s first forays into his medical data and visualizations was trying to represent My Life on Drugs. Admittedly a hard process that probably required a lot of patience and persistence, Kenneth was able to create a really nice timeline that illustrates his medical history through his medication.

Kenneth's Medical Lifeline

10 Years of Crohn’s
If you don’t read anything else about Kenneths, his ordeal, and his experience working with his own medical data you should take a look at his amazing 10 Years of Crohn’s Disease infographic and accompanying commentary. As you’ll see Kenneth did a wonderful job working with his numerical health data as well as written notes, diagrams, and other information sources to paint a picture of how Crohn’s disease has impacted his life. Let’s just look at a few sections here.

The diagnosis portion of his medical infographic is one part that I find really interesting. Many times we think of QS as only dealing with numerical data, but in the medical universe data can come in all shapes and sizes. By looking at notes and diagrams along with other vital information Kenneth was able to create a much clearer picture of his history.

History of illness and diagnosis

After Kenneth was diagnosed with Crohn’s disease he was prescribed five different medications. Here you’ll see the number of side effects he found for those medications and what he’s experienced. Along with his medication and side effect history you’ll see a histogram of his life history over the last 10 years.

Crohn's Diagnosis: Medication and Side Effects

There are so many data gathering and sense-making insights that Kenneth has has done a wonderful job of exploring and explaining. If you’re interested in compiling your own medical history and creating your own electronic health record then make sure to take some time perusing DIYEHR .

Every few weeks be on the lookout for new posts profiling interesting individuals and their data. If you have an interesting story or link to share leave a comment or contact the author here.

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