We seem to be entering the era of the quantified self. I have a wearable device that monitors how much and how well I sleep, and counts the number of steps I take every day. I’ve hooked this up to my Personal Health Record (PHR) at The Health Chain, and it pumps this sleep and movement data into the PHR several times a day. My morning run is tracked by a satellite tracking sports watch, and the distance run, pace, time, and energy used also makes its way into my PHR. Then, when I return from my run, I measure my blood pressure and weight, and both these readings are also flung into my PHR. Every now and then I measure my random blood glucose – yes, also into my PHR.
My PHR allows me to share some or all of this with my doctor. But does my doctor want to know, and is this information even vaguely useful to the doctor? This article at Venture Beat says no, the doctor doesn’t want it. And who can blame them, imagine a couple of thousand of your patients sharing trivial and unvalidated bits of information with you every day, several times a day.
Whilst each of us may be fascinated with the data that we collect as we quantify ourselves it is almost certainly going to overwhelm the medical profession if we expect our doctors to share our fascination. Apart from overwhelming, the information is just not that clinically useful. It would be very rare circumstances where a clinician would need to know the average number of REM cycles you had during sleep over the last little while. This is made even more so when the reliability of some of the data gathered is in question. The clinical devices (e.g. blood pressure cuffs, glucometers, and the like) have generally been validated as accurate, but not the consumer wellness devices and wearables. This leads to a real possibility that the data is not accurate.
PHR systems that gather data from wide and disparate sources need to be able to summarise data, and have algorithms which are able discern (even if crudely at first) which of those summarised data points might be clinically meaningful. So, whilst your doctor may not want, or need, to know the average number of REM sleep cycles, if you are above a certain age, it might be very meaningful that your sleep patterns are changing from being at night to more day time sleep. Sudden changes in regular patterns could also herald something that should be noticed. Obviously all the data should be available “on demand” when and if a doctor feels the need to drill into it.
One last point raised by the article, is the matter of liability. Is a doctor required to investigate if a previously active person stops being active from one day for the next? Would it be just a step to far in the creepy direction if a wearable device wearer was contacted and asked: “We notice that you are suddenly walking a lot less than previously, are you OK?”. Most importantly, would there be liability if a health care professional did not notice the change and/or failed to act on it?
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