Last weekend I joined many other computer and radio hobbyists at the Trenton Computer Festival for two days of talks, workshops, and parts-vendors. While I was not on the program this year, I found a number of interesting presentations offered, and I spent much of the weekend attending talks. Two of the themes explored were security and privacy, and communicating with nontraditional devices wirelessly using Internet protocols.
As technologies of computation and communication evolve, two of the key issues facing developers and consumers have been privacy and information security. While our cell phones routinely track our every move, we rely on goverment agencies not requisitioning that information to keep our whereabouts private. We live in fear that those of our whereabouts, activities, and friendships which we are posted to blogs, Facebook, and Twitter -- whether by ourselves, or by our friends and family -- will be used to compromise us, ruining our careers and relationships, or that someone will hijack our accounts and change that information, again to our detriment. This leaves many of us hesitant to buy into auto-insurance devices that monitor our driving habits, or Microsoft- or Google-hosted electronic health records that may open us up to relative reams of "diabetes cure" spam or medical identity theft.
On the flip side, I also see tweets and folks from the diabetes online community complaining about why our doctors can't -- or won't -- read our glucose logs directly from our glucometers and CGMs, why we have to wait three months for our endos to barely glance at our pump logs, and why we can't automatically aggregate the data from two brands of glucometer, a third brand of pump, and a CGM, into a single iPhone application with integrated Calorie King database, exercise log (including heart-rate monitor data and ANT+ data from a bicycle or other exercise vehicle), and anything-and-everything-else we might track, without us having to manually enter a single reading. Or, why we can't have a glucometer module that attaches directly to an iPhone or Android phone. (Sanofi-Aventis, title sponsors of Team Type 1, announced such a device at the 2010 EASD Conference. As far as I know, the device -- developed using Wavesense technology -- is not yet available for sale in the US.)
Unless you have, or provide care for, someone with a data-driven care regime (such as diabetes), you are not likely to have a clue how much the ability to log and analyze data is, nor the ability to securely transmit those data to a care team or to a data bank aimed at researchers trying to improve your life and the lives of others with similar conditions. This put me in the unique position of countering the "invasion of privacy" issues that have been hampering technological progress with the observation that many of us want automated reportage and analysis of our diabetes data, and that many "engaged patients" or e-patients actually want those data to be aggregated, analyzed, and siloed with the expectation that future researchers will mine that data for information and methods that will improve the state of the medical art in general, and our own health in particular. It made for engaging conversation and a new venue for diabetes advocacy.
I can only hope that somewhere down the road, companies looking to develop novel integrated medical devices and Internet-augmented healthcare delivery will be willing and able to engage those of us who are willing to participate in data collection and -aggregation in a collaborative move towards the future.
