An article in Slate by Hugo Campos, an activist for data openness who has spoken at TEDx events and been featured on NPR and in the Wall Street Journal, called for patients to have access to their medical data transmitted from implanted medical devices in the same way they can access data from fitness monitors like FitBit or heart monitors like AliveCor.
The four major manufacturers of cardiac implanted electronic monitoring devices — Medtronic, Boston Scientific, St. Jude Medical and Biotronik — do not provide patients access to the data the devices collect. Mr. Campos argued that because the device is implanted in his body and collecting information pertinent to his health, he has the right to know what it is collecting without having to check in with a physician.
“We must transform the current system into a patient-centric model that educates, equips and empowers individuals — not just the doctors who care for them,” Mr. Campos wrote. “We cannot be truly patient-centered until we have full control over our health data and the devices that keep us alive.”
Arguments against making this data available to patients include regulatory and liability concerns as well as privacy. This is not a new question: The Wall Street Journal and the Institute of Electrical and Electronics Engineers posed the question in 2012. Current FDA rules only require that the information be sent to physicians, and while the agency supports patient access, it adds the caveat that access to the information must include interpretation so patients can understand it.
