Campos, an advisory board member at Stanford Medicine X, is an advocate for giving patients access to their medical data.
Hugo Campos has been at the forefront of the battle to give patients more access to their medical device data.
In a YouTube video Campos explains how hundreds of thousands of patients all over the world receive implantable cardioverter-defibrillators (ICDs), pacemakers, and loop recorders every year. Then, guitar in hand, he launches into a variation of the classic protest song “It Isn't Nice” by Malvina Reynolds. Not a professional singer, his voice is nonetheless calm, although not self effacing, as he sings, “That's not right / I've told you twice / It isn't nice, it isn't nice...”
But Campos isn't fighting for a typical civil rights issue. He's talking about access (actually, the lack thereof) to data in his implanted medical device. A few years ago, Campos was given an ICD to treat a genetic heart defect. The device wirelessly transmits data about itself as well as Campos's heart condition. The problem for Campos—one that he's been fighting for more than three years—is that these updates bypass him entirely. If Campos wants any access to his data, he has to make arrangements with his doctor. It's his vocal dissatisfaction with the situation that has made Campos a household name among patients’ rights advocates and, for better or worse, device makers.
A TED speaker, Campos has been outspoken, particularly through social media, about his belief that patients should have access to their data, and he isn't afraid to let even the big players, such as Medtronic, know how he feels. While device manufacturers have argued that patients wouldn't know what to do with their data if they had it, Campos refutes the claim.
“Whether I can make sense of it or not, it's another problem," he said in an NPR interview. "I should be allowed at least to have a chance to look at this data and see if I can make sense of it.”
So is a medical device something that should come with restricted access, like most other electronic devices? The debate is ongoing. But if Campos has his way, patients will have just as many rights over their invasive implants as they do over any natural part of their bodies.
|Learn best practices for design of implantable devices like ICDs at "Design of Implantable Devices,"
a Medtech Innovate Seminar at MD&M East
in Philadelphia on June 18, 2013.