So, yesterday at the first Quantified Self conference, I announced my collaboration with Kyle Machulis, a software and hardware engineer who’s building open source libraries for whatever health equipment he can get his hands on. And that includes remote monitoring units used by pacemaker and implantable cardioverter-defibrillator (ICD) patients, eager to access their data.
|Kyle Machulis, of OpenYou.org, presented at The Quantified Self Conference in Mountain View, CA.|
|Above, a portion of the OpenYou table at the Quantified Self Conference. A commonly used remote monitoring is seen among a series of gadgets. In the Ziploc bag, an implantable defibrillator.|
|A poster announced our collaboration and bold experiment.|
The implantable cardioverter-defibrillator is a small, battery-powered electrical impulse generator implanted in patients who are at risk of sudden cardiac death. The device is programmed to detect a life-threatening arrhythmia and correct it by delivering a jolt of electricity to the heart. It also has the ability to perform biventricular pacing in patients with congestive heart failure or bradycardia (slow heart rhythm).
In addition to providing life-saving therapy, the ICD also collects and stores comprehensive patient, device and physiological data that can indicate progression of the patient’s heart disease. Data collected by the ICD is automatically transmitted to a proprietary (and closed) network and made available to authorized physicians via the Internet, thus giving them efficient access to make informed decisions when and where needed.
No access for patients
The main problem with remote monitoring is the fact that it excludes patients from accessing this trove of personal medical data, thus giving them no opportunity to learn from it.
Only time will tell whether or not we will be successful in our experiment. But as Kyle says about the practice of keeping patients from their data: “[It] needs to stop, and we’re here to make that happen. It’s your data, it’s your right to have complete access to it.”
View the Quantified Self poster here (link downloads a PDF).