Earlier this week I was in Boston (more precisely in Cambrige, MA) at a brain-stretching event organised by the Future of Health Technology Institute, namely indefatiguable Renata Bushko, and supported by Professor Marvin Minsky at MIT Media Lab. It is an event to attend if you are a health future visionary of any sort. Academic and geeky in equal measure, it is a marathon through research (and often applied solutions) in several areas that excite those with eyes firmly set on further horizons in health technology – neuroscience, bioinformatics, computational biology, nanobiotechnology, biochemistry, physics, computer science, cybernetics, to mention a few.
I was part of a panel discussing personalised medicine. My focus was personal informatics, a growing interest for me in the last couple of years. And of course, the individual.
Here are the slides on which my talk was based uploaded to slideshare. Although slideshare now does slide notes (yay!), they don’t show in the embedded slides, so you can find the text of the talk below this:
“… characterised as the monitoring and displaying of information about our daily activities through intelligent devices, services and systems. This information allows us to see trends and opportunities for change that we would otherwise miss… If people can access this information about their daily routines, and interact with their own personal data currently invisible to them: would they make more informed decisions?”
From Physiological Computing:
“Bodyblogging is the act of logging how your body changes over time using web technology (e.g. a blog). This log can be used to inform ourselves how our activities and environment affects us in our day to day lives (e.g. logging weight on an exercise website). This data can subsequently be used to modify our own behaviours if we so wished (e.g. weight data could be used to determine which exercises are most effective for sustained weight loss). Wearable sensors allow us to record personal data about ourselves continuously without our intervention, and with wearable sensors becoming more pervasive the rise in body blogs is expected to continue. The feed provides 30 (or 5 or 1) minute snapshots of our user’s heart activity. Each tweet is time stamped to provide a continuous data stream allowing viewers to see long term patterns such as the sleep cycle and circadian rhythm (day cycle) as well as short term events such as exercise recovery.
While the things we might learn about ourselves may appear trivial this information can have a significant impact on the user’s behaviour when they have access to it. By experimenting with body blogging ourselves we can learn what responsibilities body blogging applications should undertake to protect their users as well as the utility of using certain physiological measures over others. For example after learning the effect of the high calorie food our current user reduced consumption of this particular product.”
The user having access to their internal state through passive and constant monitoring is one way to create self-awareness and also start seeing patterns. Of course, it is not enough to self-diagnose and neither it is desirable, but such data can go a long way towards new kinds or better diagnosis by medical professionals.
How it works: “You’ll track your own mood with Moodscope, but perhaps the best bit is being able to nominate someone – or more than one person if you like – to act as a ‘buddy’ for you. Each day when you’ve taken the test, Moodscope will automatically email your score to your buddies, along with a link to your graph so they can follow your progress. A buddy could be a trusted friend or colleague. They could be a partner or relative. They might even be a counsellor or therapist. There’s a phenomenon called The Hawthorne Effect in psychology, first observed during a series of experiments on factory workers which were carried out in the USA in the 1920s. The experimenters aimed to investigate how environmental changes, such as brighter or more subdued lighting, influenced the workers’ productivity. The conclusion was that the workers responded favourably to the interest that was being shown in them, so they became more productive when they knew they were being observed. It seems to us that the very act of knowing that someone else is keeping an eye on your mood may well help to raise your spirits. There are plenty of examples in other areas of life which suggest that monitoring something regularly can lead to positive change:
- People who wear a pedometer tend to walk a mile a day more, on average, than those who don’t.
- Dieters who weigh themselves every day lose more weight than those who weigh themselves less frequently.
- Problem drinkers who are asked to keep a diary of their alcohol consumption tend to reduce their drinking over a period of time.
The first people to experiment with Moodscope have noticed similar effects over time: tracking their mood and sharing it seems to have caused them to be happier. ”
On individual level there is increased self-awareness, which leads to pattern recognition in the data and by extrapolation to one’s behaviour. One of those is establishing a baseline for the measured variable e.g. heart-rate or blood pressure, and noting deviations. Understanding the meaning of deviations can provide basis for changes of behaviour or at least better informed decision making. For healthcare providers, such data can be used for better or even different, currently impossible diagnostics based on previously unavailable data. With more structured and experience self-tracking and data gathering, clinical trials may benefit too.
I am arguing here that innovation will be coming from the demand side rather the supply side given its ‘limitations’. A large responsibility for this goes to regulation, which stifles innovation wherever present. Then there is the research and academia which have their ways, methodologies and approaches that are not known for their flexibility but certainly known for their complexity. Centralised and often bureaucratic nature of healthcare providers and institutions doesn’t encourage innovation other than incremental and highly managed one. And lastly, this side is institution-driven, for their own interests and purpose.
Whereas the demand side is driven by need - need for cure or treatment, better quality of life, ways to manage a chronic condition – for things that affect people’s life directly. It consists of individuals and communities. The complexity emerges from practice and knowledge comes from pattern recognition and self-awareness. There is no centre, the needs and solutions are distributed. The search for practical and immediate solutions can lead to radical innovation, which is often lateral to traditional approach and often commonsensical. But first of all, the demand side is individual-driven.
Assumption (and fallacy) of uniformity
The problem with innovation on the supply side is that solutions are designed to fit everyone or at least the largest number of people possible. Although a worthy goal, this invariably means one size fits all approach. This applies to healthcare due to the cost of development and regulation. When you observe the development of internet & web technologies, their adoption follows is a ‘heat-wave model’. You have a first small group, highly motivated and dedicated individuals who come up with a solution usually for themselves. This group’s usage improves it so the next wave of users can come on board, lather, rinse, repeat until it reaches mainstream or at least a significant niche.
Future’s here it’s just unevenly distributed…
Any conference with the word ‘future’ in it should have William Gibson’s saying mentioned at least once, preferrably more. So here it is. All major innovations, especially the ones that come from the wild – namely, the internet – have occurred over a period of time, with the early adopters being positively non-mainstream. The same applies to the self-tracking crowd, to a ‘normal’ person, these people appear unnaturally obsessive and to some even impersonal. The desire to quantify self or track one’s bodily functions is indeed odd. But I guarantee you that at the dawn of every major innovation that advanced human knowledge and life is a bunch of geeks of the same kind. And this building bears witness to it than most.
A new kind of literacy
What interests me about personal informatics, apart from the obvious benefits to one’s health and life, is what I call a new kind of literacy. Or another layer of literacy. To draw a parallel with books – before books become widely available people didn’t expect to know how to read and write. Once they became ubiquitous literacy was something that was not only expected but required as the general level of education rose.
Nobody can go back to saying, well, what do I need to read and write for – the priest, scribe, teacher, doctor will read or write what I need for me.So technology and the resulting availability of books (and information) turned something niche and exclusive into an indispensable part of individual’s life, part of their personal skill set.
Similarly with data – digital formats, copying, distribution, accessibility and therefore wider availability of data adds a data management dimension into our lives. Until recently only businesses and institutions processed information on any meaningful scale – scientific, financial, aggregate, industrial etc. But the technology brought analytical and data processing functionality to the individual and as a result it will become an integral part of our lives, online and eventually offline.
One approach is taking accepted or established scientific methodology and applying it to the individual. This has its merits, especially if the data output is meant to serve as input for further purposes. However, this shouldn’t be the only approach as individuals have different needs, complexity thresholds and might actually come up with new and useful analytical conventions. So insisting on scientific methodologies for personal informatics in all its aspects would be like taking manuscript conventions and applying them to printed books instead of letting paperbacks evolve.
There is also the opportunity for a feedback loop about the scientific quantitative methods themselves, as personal informatics will generate new ways of processing and analysing data either for convenience or other reasons. The new discoveries will then feed back to the scientific community. These days it is not unusual to see a monk reading a paperback.