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Digital implants raise important questions about the nuances of patient information access.
Hugo Campos, ICD patient, made this image with one of his own X-rays.

Hugo Campos has a Medtronic brand implantable cardioverter-defibrillator (ICD) that has saved his life more than once. He, like tens of thousands of Americans, relies upon this battery operated implant and the data it generates to monitor and regulate every beat of his heart. But, as he explains in his interview with KQED reporter, Amy Standen, a digital implant raises some important questions about the nuances of patient information access.

Hugo feels fortunate to have received the implant before his cardiac condition claimed his life but now lives with the stress and fear of managing a chronic medical condition. As a result, he has taken up the increasingly popular hobby of self-tracking and finds it empowering to log the basic biometrics he has easy access to; he wears a FitBit to track his physical activity, a Zeo to track his sleep, and checks his blood pressure throughout the day. But, unlike these commercially available devices, his own ICD is inaccessible to him.

Hugo’s ICD wirelessly transmits data twice a day and tracks his heart’s condition over time as well as the status of the device itself. It makes sense that much of Hugo’s treatment is therefore based on this growing personalized archive and that there are some significant insights could come from an in-depth analysis. However, unlike a blood glucose reading or weight read off of a bathroom scale, his ICD data is only sent to his doctor and remains encoded in Medtronic’s proprietary language. Hugo has to schedule a highly mediated doctor's appointment and make special advance requests to receive Medtronic printouts of his data with each visit to the hospital. This strange relational structure is far removed from the physical allowances of the device and is based mostly around Medtronic’s legal requirement to maintain patient data security.

Patients like Hugo sit at the crux of an emerging tension between the physical information generated by the body and the digital surrogates the medical world uses to observe, organize, and treat them. In this case, the automated organizational system is not only Hugo’s treatment, it’s a complex combination of information as a thing (Hugo’s heartbeat and ICD) and a document (the digital record of his heartbeat as well as Medtronic data used to calculate life saving actions.) The irony, of course, is that the patient has no right over the thing or the document despite it being generated in and by his own body.

David Steinhaus, medical director of the Cardiac Rhythm Disease Management division at Medtronic, was quoted in the original news story as saying, "you want to [share the data] in a way that makes sense for the patient, that they can interpret correctly, so they don't generate a lot of angst and difficulty for the physician or anyone else.” But to Hugo, that's not the point."Whether I can make sense of it or not, it's another problem. I should be allowed at least to have a chance to look at this data and see if I can make sense of it." (Standen, KQED, May 2012)

I recently had the chance to catch up with Hugo to discuss this quest for personal medical information access. I was pleased to learn that, since the time this news story aired, he has “come across” a device that allows him to read some of the cardiac events detected by his ICD. However, without the clinical mediation he gets in the hospital, he still struggles to understand what most of the data means.

I asked if he felt more anxious because he only had access to partial information about his serious condition. But he instead explained that the additional information has improved conversations with his physician and that he feels better because he’s able to take a more active role in his care. The only thing he found “anxiety provoking” was when he discovered, much to his surprise, that his device had been encoded with his full name and social security number - common metadata tags in modern implants - but a method he was very uncomfortable with.

Hugo Campos continues to be a strong voice in the e-Patient and Quantified Self community. If you’d like to learn more about his perspectives on patient data access, you can see his TEDxCambridge talk here.