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Then again, I'd never lived (and still haven't) with type 1 diabetes. I'd never connected with the Diabetes Online Community. And I hadn't lived with proving that I didn't need medications for my medical conditions. (Yes, that type of denial.)
In the intervening decade, I've learned not just that a randomly-chosen glucometer probably has a data cable and analysis program available for separate purchase, that many endocrinologists' offices have cables and software for downloading the logs from insulin pumps and (now) continuous glucose monitors, and that many separate programs and services exist to log and analyze not just one's glucose readings (often in conjunction with diet and insulin doses), but also that blood pressure, weight, and pulse oximetry can be measured, recorded, and analyzed at home.
I've also learned that there are online repositories for one's personal health records, which can communicate directly with our devices, analyze our data, and keep everything in one (hopefully) convenient place..
For people who are not living with a chronic illness, or who haven't been initiated into the realms of e-patienthood or the Quantified Self, this is a novel concept which means it's topic-fodder for a computer club presentation. That we are computer geeks means that even issues such as incompatible data formats, the inability of current software to combine and analyze readings from multiple types of device, and device and data security can also be topics for extended discussion, as folk such as Bernard Farrell, Khrt Williams, Bennet Dunlap, and Scott Strumello can tell you.
I presented a talk on "Connected Medical Devices" before our local computer club back in September. In its wake, the president of another area computer club who I know through the Trenton Computer Festival (TCF) asked if there was a video of the presentation, and/or if I'd be willing to present it for his club. My club doesn't record its presentations, and getting down to the other club without a car was not feasible, so I chose Door Number 3: to submit the topic for presentation at TCF, and hope that folk from my colleague's club would be able to come, or that someone could manage a video for him to show them later on.
While last Saturday's presentation was basically the same as the one I gave in September, the audiences were very different. The TCF audience included some caregivers and some folk who had never thought to ask about connecting their devices and analyzing the readings folk who were living with the medical issues that made connected devices a good thing, if not an absolute requirement. The questions ran fast and furious, ranging from data and export formats to HIPAA limitations and device security to Medicare coverage for glucometers that have data cables available. My slide deck became a bit of an anchor (the dragging-you-down kind), as my audience wanted more information than I could give them in the allotted time, and in a different order than I'd originally planned.
We often talk of connecting people with our online communities, with online and offline resources, with access to medications and testing supplies, and so on... At the Trenton Computer Festival, it was about connecting people with their health data. On the computer (or smartphone) display of the right person, that can be just as empowering.
Megan was diagnosed in 2009 with Type I. As an RN, she was familiar with the medical side of her diagnosis; learning to be a good patient on the other hand, was and continues to be the challenge of her day to day life. (Read More)