A Reframing of the Stream

In a recent Wall Street Journal article, David Gelernter was interviewed and in effect asked what was on his mind.(1) Gelernter, as the IT intelligentsia will know, is the Yale Professor of Computer Science, Unabomber victim and the individual some credit with coining the term “cloud” for that amorphous aggregation of the data of our lives. The whole article is worth a read for its value in helping provide a different framework as to how we think about information and its manipulation and use in the future. Gelernter sees an expanding future in which almost boundless information is readily and inexpensively available on a ubiquity of devices of increasingly smaller size and elegance of design.Today much of what we know, see, collect and produce starts out or quickly becomes digitized, creating an enormous volume of information that truly boggles our capacity to imagine what it looks like or how we might use it. One major contention here is that the size of this database is so incomprehensibly large that it outstrips our ability to meaningfully use it, both with our current frameworks of understanding and software on our devices. Just take a quick look at your desktop if you want to view Exhibit One of this argument.However there are a few glimmers of coherence in this morass. Facebook and increasingly Twitter allow us to begin to construct what Gelernter calls “life streams” which allow the individual to order the available information in a way that makes sense to them and to begin to engage or communicate with others that have their own reasons for the engagement. This example struck me to consider how we are now engaged with trying to build a better infrastructure for health information. Rather than build off of the rapidly expanding and less expensive technology of the cloud and letting individuals bring structure and meaning to the information, we are constructing an information architecture for a delivery system that is failing and hoping that better access to the information might help things. At one level it couldn’t hurt, but if we imagined and used the information differently could we build a better system faster and in a way that might engage the consumer more authentically.Here is how it might work.Let’s say that you are a teenager that comes down with an unusual, non-fatal syndrome that manifests symptoms of chronic fatigue. Few people know much about this disorder in fact your initial diagnosis sprung from one of your parents reading a general health article in the daily paper. Like most tech savvy families yours uses the web to refine the diagnosis and because you have a great primary care provider you enlist her fully in the discovery process as everyone becomes better educated through sharing their learning electronically. So far nothing new; happens every day.But now you move from being a consumer of information about your condition to becoming a producer of a great variety of things: Blood pressure readings from a home monitoring, diet, exercise and its relationship to heart rate, pictures of you on a good day, some on a bad day, musings in a journal about these good or bad days, schools assignments that you are now doing at home, even hourly emoticons on how you are fairing (on some days one key stroke for a frowning face is all you can manage). Now these contributions and all of the others items that have been contributed something about your condition from others who seem to have it to those that write about it in JAMA creates a stream.But this stream is amorphous and pretty chaotic. What you need is a really easy to use tool to begin to take the stream and turn it into something that has meaning; something that can become a narrative that conveys a story. I think this is in part what a tool like Facebook offers in a very beginning way. The narrative tool could have filters so that you’re not inundated with all of the flotsam floating down the entire stream. It would also have internal structuring tools that let you compose your narrative easily and simultaneously communicate your story widely or to only those you wish to let in, or better some combination of both, just as the tools exist today. The narratives could vary thematically of course. There could be the targeted clinical management story line that you share with my clinical partners, both near and far. You might have a “keeping up with school” narrative that you use with teachers to organize your schoolwork, document and share progress, and carry on a dialogue. The tool should also have an opening so that others who are struggling to manage this condition come together for exchange, support and encouragement. Of course each narrative just grows the size of the stream, but it does so in the context of adding more information that has some use, as decided by the consumer.Once you have rich narratives in place you may need to pluck out specific exhibits that your various partners--such as physicians, teachers, family members or you--find necessary, useful or engaging. This function should have a rich set of template apps and be open ended for free form composition as needed. The partners themselves could have their own exhibit needs and request that you use your access to dip the form of their exhibit into your narrative so that it could be filled with the meaningful data they need to assist you or serve some need they have.Finally, you could use the stream, narrative and exhibits to construct plans for future action, record progress and monitor changes as needed. Developing such plans would be easier as they could be readily drawn from the data that has already been shaped, narrated and exhibited. The plans would also draw from richer sets of data and present a more complete picture of what is and what could become. Even with today’s technology, these actions and their watchful monitoring can always be nearby.The reality is that all of the technological capacity to do the things described here are readily available to most people in the US now. But we don’t think of health information technology in this way. We see it and the system sees it as an automated version of the paper record. To move to this reality will require us to change how we think about the definition of the record, who owns it, what we use it for and how those that help us relate to it. Information and communications technology have and continue to revolutionize our world of knowledge, we need to liberate them to help us with all of health care.1 http://online.wsj.com/article/SB10001424052970203833104577072162782422558.html