Earlier this week we posted what we hope was a generally supportive piece about the campaign to make data from implantable devices such as defibrillators available to the patients in whom they are implanted. It seems like the campaign is gathering pace, in USA at least, with articles like this one in which Qmed reports on the activities of one “tech-savvy” implantee, Hugo Campos, who has spoken at a TEDx event about his own situation and its implications.
The more we read, the more fascinated we become. In the video, attached to the Qmed piece, Mr Campos discusses how he can buy (indeed has bought) so many pieces of relatively inexpensive equipment to monitor everything from blood pressure to heart rate to the quality of his sleep! And yet, from his $30,000 implantable cardiac defibrillator (ICD) he can get zero data, despite the fact that he has a right in US law to see that data.
We love people like Hugo. He’s a great speaker, obviously fiercely intelligent and enough of a data addict to even go on courses to learn how to programme ICDs! While he admits he’d be unlikely to understand heart function data it in the form in which it’s presented to clinicians, we somehow doubt that… he’s probably doing a home cardiology course as we speak. But just because he may be slightly unusual in this regard, maybe he’s at the end of a spectrum of people who would benefit from being able to see the data, regardless of their legal right.
So back to the issue, which is that somehow, somewhere, sometime soon patient data from ICDs will become available in easy-to-use, patient friendly portals. The Qmed article suggests that this may ultimately be manufacturer driven (or at least manufacturer’s driven by public demand), as it seems likely that once on of them provides such a portal they’ll all have to. Boston Scientific and Medtronic are clearly well onside as the article suggests.
And so to Europe. Whether through language barriers or a publicly funded health service, coupled with an intrinsically slower rate of technology adoption, we’re seemingly not about to start jumping up and down demanding this data yet. Looking at an average UK NHS cardiology clinic, it’s hard to see it, although of course part of the argument is that remote monitoring and a reduced need to regularly explain heart function data might just reduce the need for sweaty waiting rooms in the first place!
So we shouldn’t dismiss the idea out of hand. If the goal is a healthier population and fewer early deaths from avoidable causes, healthcare professionals should be driving these technologies themselves and no doubt many are. We see government sponsored TV campaigns on subjects as diverse as stroke awareness to bowel cancer awareness to the new campaign for “hard and fast” CPR, so why not follow the logical conclusion and actually pioneer the idea of “informed patients being better patients” (thanks Dr Scher) and campaign for technological advances like this ourselves.
And then there’s the complexity of the data, in itself a potential barrier and justification for not sharing the data. Campaigner and data-availability advocate David Scher MD, in an interview with Hugo Campos put it like this; “The entirety of the data is sometimes too technical for even some physicians to understand and not relevant to patients. But there is definitely data which patients should have. I think a panel of patients with physicians of professional organizations (heart rhythm society) should work together on this.”
In summary, we’re a pretty passive patient population compared with USA, which probably comes from the fact that in coronary care we’re almost always getting treatment free from a government institution, so feel more “grateful” than “demanding”. A comparative lag when it comes to adoption of technology, while not an inevitability is the usual state of play.
So, hats off to Hugo. He may not look much like your typical European ICD patient, but if we want to make progress we could do worse than take a leaf out of his book.