Last week I had an absorbing conversation with Natasha Gajewski, someone who, besides being the daughter of a former patient, is also the CEO of Symple Health, a company that has produced a new app helping patients to keep track of their symptoms. That patient of mine was by training a statistician, and to each visit with me he would bring piles and piles of printouts, records of lab results, readings from dialysis. I felt it less than relevant to his care - at least most of the information was just superfluous. But, on the other hand, I didn't want to talk him out of something that was obviously important to him.
To hear now her daughter tell it, though, his data collecting was an obsessive thing, keeping his grandchildren away from him because - by his own personal calculations - a visit from them might disturb his homeostasis.
Obviously, his daughter knew him much better than I did (he passed away a few years ago). But I can't help think that here we have several sides of an important phenomenon: that of the engaged patient who records their own data for the sake of their health. This medical version of the "quantified self" can lead - as this story hints - to reassurance and obsession both.
The quantified self, for those who don't know, refers to the practice of recording - through means both more and less technologically advanced - "readings" from daily life, and using that information for the benefit of health. Such an initiative has something in common with "big data": the effort to amass large-scale collections of data on a population level.
From a medical perspective, I don't know what we can expect from big data. Certainly many claims have been made for population-level data and its potential to improve health on a global scale. Who knows if that will pan out? But what about big data on an individual scale?
Data collection works if there is a question waiting for an answer. Otherwise it's like playing the stock market without any real investment, watching random numbers jump up and down. If you have high blood pressure, checking your blood pressure at home might help to control it. If you have diabetes and check your blood sugar, ditto. But to monitor yourself with thousands of data points, most of which will not answer any askable question, verges on what Abraham Verghese has termed the iPatient - the electronic version of the patient, the tests and results visible on the screen that doctors view to the exclusion of contact with the actual human being. Only, in the case of this hyper-self-analysis, the iPatient is analyzing themselves in a data-centric way to the exclusion of the bigger picture.
What we need is at least two things:
1. A sense of what data will actually be helpful for a given patient, and what "help" (i.e. clinical improvements, patient-relevant outcomes) can be expected
2. A realization that any new source of data will, in general, not be the game-breaking change that people are looking for. Health care problems, in general, are just hard, and data are only part of the solution, which involves patient preferences, the multitiude of possible ways to identify the problem (differential diagnosis), and the goal of patient and physician.
3. An appreciation that data collection can provide, to the individual, both very real reassurance and self-empowerment, as well as a source of obsession and paradoxical lack of control
As Natasha said about our conversation, there are no easy answers, neither unlimited data nor its lack.
To hear now her daughter tell it, though, his data collecting was an obsessive thing, keeping his grandchildren away from him because - by his own personal calculations - a visit from them might disturb his homeostasis.
Obviously, his daughter knew him much better than I did (he passed away a few years ago). But I can't help think that here we have several sides of an important phenomenon: that of the engaged patient who records their own data for the sake of their health. This medical version of the "quantified self" can lead - as this story hints - to reassurance and obsession both.
The quantified self, for those who don't know, refers to the practice of recording - through means both more and less technologically advanced - "readings" from daily life, and using that information for the benefit of health. Such an initiative has something in common with "big data": the effort to amass large-scale collections of data on a population level.
From a medical perspective, I don't know what we can expect from big data. Certainly many claims have been made for population-level data and its potential to improve health on a global scale. Who knows if that will pan out? But what about big data on an individual scale?
Data collection works if there is a question waiting for an answer. Otherwise it's like playing the stock market without any real investment, watching random numbers jump up and down. If you have high blood pressure, checking your blood pressure at home might help to control it. If you have diabetes and check your blood sugar, ditto. But to monitor yourself with thousands of data points, most of which will not answer any askable question, verges on what Abraham Verghese has termed the iPatient - the electronic version of the patient, the tests and results visible on the screen that doctors view to the exclusion of contact with the actual human being. Only, in the case of this hyper-self-analysis, the iPatient is analyzing themselves in a data-centric way to the exclusion of the bigger picture.
What we need is at least two things:
1. A sense of what data will actually be helpful for a given patient, and what "help" (i.e. clinical improvements, patient-relevant outcomes) can be expected
2. A realization that any new source of data will, in general, not be the game-breaking change that people are looking for. Health care problems, in general, are just hard, and data are only part of the solution, which involves patient preferences, the multitiude of possible ways to identify the problem (differential diagnosis), and the goal of patient and physician.
3. An appreciation that data collection can provide, to the individual, both very real reassurance and self-empowerment, as well as a source of obsession and paradoxical lack of control
As Natasha said about our conversation, there are no easy answers, neither unlimited data nor its lack.
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