One of the advantages of modern technology is the ability to view remote events live; another is to discuss a presentation, while it is being presented, "in the back channel" — i.e., in a chat room or on Twitter. These technologies give many of us who could not otherwise attend a technical presentation the opportunity to attend virtually, and to participate. This past week has been chock full of such opportunities.
The conference-o-rama started off Saturday with TEDx DelMar. TEDx is a series of independently-organized TED events around the world, each organized around a particular theme. The TED folk lend their expertise (and their recording gurus); the local folk provide the venue and the speakers. The theme of Saturday's TEDx was A Search for A Cure [for Type 1 Diabetes], and the TuDiabetes chat room was open for folk to discuss what the presenters were offering. While most of my local DOC colleagues were off meeting Simon from Australia, I spent a feverish day (literally — I was sick all weekend) glued to the computer, watching presentation after presentation and — with the rest of the folk on channel — chatting up a storm.
Tuesday and Wednesday, my alma mater livestreamed their annual Emerging Technologies conference; back-channel discussion proliferated on Twitter (tag #emtechMIT). In-between pitch sessions and talks on alternative energies, there were panels on data privacy, innovations in health care technology, personalized medicine, self-measurement for medical (and other) reasons, and mobile healthcare. You can watch the sessions on-demand here.
The conversation continued on Thursday with the first day of the two-day Connected Health Symposium in Boston (right across the river from the Cambridge-based MIT conference). While the speakers were not livestreamed, the #chs11 Twitter feed included lively discussion of the use of Facebook, healthcare portals, health-related games, health social communities, and healthcare-provider instructional sites to help our doctors get a better idea of how our medical conditions (and their prescriptions) affect us, and to help us take better care of ourselves.
Suffice it to say, the more electronically-connected amonst our own community are not the only ones who would like to see standardized data outputs from our medical devices, which we can import into the software of our choice, which will analyze those data not only individually by device, but also in conjunction with the data from all our medical devices. We are not the only ones who would like to see patient-anonymized data collected and correlated to see if and how a given therapy works, what adverse events might not be reported (or might be underreported), and what the long-term effects of these therapies might be.
Still, many of the presenters skipped around the elephant in the room: the FDA. Unless our government agencies move towards less regulation or faster approval, many of these novel devices, therapies, and analyses, and methods of accessing our medical data will not be available in the United States. Its mate, HIPAA, was also largely ignored — but since that gives the government and our healthcare providers ownership of our data (and by extension, our bodies) — as well as limiting our access to those data, I'd rather keep that one quiet until we can make sure personal medical data is explicitly listed amongst our natural (as opposed to political or government-granted) rights.
