Quantified self, lifelogging and healthcare
In an interview with TED this week, Larry Page commented on the potential for applications that quantify user data in relation to health care and related research: he talks about possibly saving more than 100,000 lives a year if use we up-to-date information about our health parameters, something that technology is now able to gather and collate relatively simply. He also highlights the importance of an environment able to guarantee the secure handling of such data.
The Google founder, who has since closed down Google Health, a storage facility for individual health data, complained that the current climate created by government spying is potentially blocking the adoption of beneficial technologies.
Larry Page knows what he is talking about, since he was close to not being able to talk at all: his recent vocal chord infection, which was initially being treated on the quiet, led him to realize the benefits of sharing information: obtaining the results of thousands of people affected by similar problems all over the world helped him deal with his illness.
Jeff Jarvis, author of Public Parts, a book about his battle with prostate cancer, a disease that society still tends to see as one very much about private parts, had a similar experience after he decided to write about his illness on his blog, and particularly his exhaustive search for information: he was the perfect man for the job: an experienced journalist, he detailed the processes that led him to make decisions about his operations and treatment, as well as on the impact of medication, while also discussing sensitive issues like urinary incontinence and impotence.
Jeff’s book, subtitled “how sharing in the digital age improves the way work and live”, provides solid arguments about how sharing can help when dealing with some health issues: he not only found a way to compile information thanks to the people who answered his requests for information and who told him about their own experiences, but he also helped many other people suffering from the same condition, as well as giving himself a boost thanks to the support he garnered.
The debate about how to use the information that our bodies generate is of the utmost relevance. We have seen the rapid expansion of devices related to the quantified self phenomenon and the appearance of many so called wearables that measure our physical activity, diet, as well as heart rate, blood pressure, etc. Something that started out as a simple activity for people who wanted to keep tabs on their exercise routine or their diet, using devices created by companies like Fitbit, Jawbone, Nike, and others, is acquiring growing importance as we realize that having such detailed information puts us in control, gives us greater freedom when it comes to making decisions about matters that can have a powerful impact on our quality of life.
The extension of this is lifelogging, a more extreme version that involves users monitoring their daily activity in much greater detail by using devices such as the Narrative microcamera worn outside one’s clothing and that takes a photo every 30 seconds, but that can get you into trouble in some situations, for example when passing through US customs. A number of interesting articles have been written recently by people who use these devices, and recommending the reader try them out, and that give us an insight into the fundamentals of lifelogging, the feelings it generates, or the personal costs associated with it.
At the same time, we are seeing the widespread take up of wearables, and are eagerly waiting to see what features Apple’s iWatch includes. All this will lead us to ponder whether we are prepared to provide companies like Apple and Google with information about our health variables, and whether they can help us look after ourselves better. On the one hand, this will require adequate security if the data is to be used properly, as well as creating infrastructure that will mean a complete rethink about health care, with us all taking a much more proactive approach.
Discussing this with doctors immediately prompts the question as to whether a healthcare professional would be able to deal with the amount of analysis required, when most of the time they are only able to dedicated a couple of minutes per day to each patient.
Talking about it with health insurers raises the issue of premiums and whether we are prepared to pay more for a proactive management of our health, which many of us probably are.
If we introduce the analysis of genetics at consumer market prices— personal genomics—into the equation, provided by companies such as 23andMe, despite the recent restrictions imposed by the FDA, then we are looking at a potential perfect storm: thousands of people around the world calling for specialist treatment based on data produced on a daily basis that can be extrapolated to improve the quality of their lives, health, or life span, but who will also be aware of the dangers, such as discrimination based on the state of their health, or risk assessment policies carried out in order to access certain services. And if the risks and benefits are relevant at the individual level, just think of the myriad possibilities for research or preventative medicine.
This is indeed a complex matter, but one that we are going to be hearing a great deal more about in the very near future.
(En español, aquí)
