Data

I had a Routine Medical Thing yesterday which required me being hooked up to a bunch of monitors for heart rate, blood pressure, etc. for a while. All very good. I don’t know for sure, but I assume that all that data was filtered down and then streamed into my digital medical record at the hospital. (If it wasn’t, that is a terrible waste, but not germane for the moment.)

Anyway seeing the monitors collecting “bedside data” as it is apparently called put me in mind of a presentation I saw a few weeks ago at a management meeting for Red Hat. The presenter had developed an alerting system that looks at bedside data and guesses whether a patient might be starting to develop sepsis, the often-fatal blood infection that is one of the big risks of spending any time in the hospital. If you catch sepsis early it’s easy to treat, but in a matter of a half a day it becomes life threatening. So an automatic alert to the nursing station not only saves nurses time, but also patients’ lives.

Of course systems like this have to run inside of a hospital’s network, because patient data has to be kept private (due to HIPAA, and also common sense to be honest). So the sepsis alert system has to run inside each hospital and be hooked up directly to whatever data stream the vendor who supplies the bedside systems makes available. This of course makes it difficult or even impossible to correlate any of this data across hospitals for research. It also means the hospitals themselves, who are in fact in the business of collecting huge amounts of this kind of data — MRI scans, DNA sequences (soon), bedside data logs — are completely overwhelmed. They are generating huge amounts of data and have nowhere to put it.

We are doing a whole bunch of work at Red Hat Research and Boston University in this area — there is lots of good thinking on ways to gain useful knowledge from data, without breaking the privacy of the data’s owner. Ultimately though I think what will happen is a shift in thinking about data ownership, data encryption, and data use. I think this will be generational, to be honest. So-called “Millenials” famously do not care who knows what about them, or so it is claimed. My nephew Sam, however, who is at fifteen part of the generation after that, refuses to get a Facebook account. Why? “They collect everything about you, it’s creepy AF,” he says. (I’ll let you work out for yourselves what “AF” means.) I’m told his opinion is common among his peers, and if it is it means that we will shortly run into a real demand for personal encryption, anonymity, and control over what can be collected and released. The days of services randomly collecting whatever tracking data they like, by whatever means they wish, will seem as naive in twenty years as cars without seat belts do today.

There are practical issues to be dealt with here, of course — if my bedside monitoring data belongs to me, how do I control who gets to see it? What if I’m unconscious? In reality though we need to deal with all these kinds of things anyway. As with all technology, the ability to do things leaps well ahead before society catches up.