Hugo Campos has Hypertrophic Cardiomyopathy and is prone to arrhythmias. He has an implantable cardioverter-defibrillator (ICD) to zap the arrhythmias as soon as they are detected-a intervention that prevents sudden death in patients with this condition.
Campos is also a self-quantifier. He obtains data on himself via wireless scales, a Fitbit accelerometer, a blood pressure cuff that can upload to his iPhone and most recently a ZEO sleep tracking device. He also captures when he feels an arrythmia and notes what he was doing (or eating) when he experienced it. He uses this data to help understand the correlation between his symptoms and his activities. For instance, he has discovered that drinking Scotch whiskey (not other types of alcohol) is associated with episodes of atrial fibrillation whereas consuming caffeine predisposed him to ventricular arrhythmias. Armed with this knowledge, he has stopped doing both.
Campos would define himself as an e-patient. e for empowered, equiped, engaged and enabled. But, he is missing something big and he aims to get it – the data being captured by his implantable cardiac defibrillator. He feels (and I agree) that he owns this data. The device, after all, is a part of his body. He wears it day and night. And yet, he can’t get his hands on any of it. The manufacturer has access to all of it using it for quality control and improvement of the devices they make. His doctor, of course, has access to the clinical data using it to make recommendations about therapy for Campos.
He has asked for help from the FDA – but they say, “that is not what we do.” He has asked the manufacturers and they say ‘no problem,” but he never gets the data. He gets print outs (summaries really) of data from his clinicians, but he can’t get the whole feed. He revealed on a PBS interview I heard today that he has even tried hacking into the device, but he doesn’t have the engineering skills to get to it. When he is told he wouldn’t understand the data anyway, he retorts, “give me a chance.”
I suspect that ultimately Hugo Campos will be successful in getting the data from his defibrillator because he is persistent, logical, and articulate. He is also shining a very bright light on his issue in some pretty high profile places – often a powerful tactic to help you get your way. Take a look at what he had to say at TEDx Cambridge:
I think this is only the beginning of the consumer empowerment movement. People like Hugo Campos want to be “co-producers” of their own health. Experts in chronic illness management, such as Ed Wagner, have talked for years about patients being prepared. I would say that folks like Campos and his fellow self-quantifiers are taking that idea a whole lot farther than anyone could have imagined only a few years ago. This just might be a tipping point for health care….one that flips the predominant “doc in charge” model of care on its head. In this brave new world of wired health, individuals can be in charge of their health and have the increasingly set of sophisticated tools to help them manage. I say hooray!