Future of Health Technology summit 2010
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Presentation for a talk on panel on personalised medicine at the FHT summit 2010 at MIT Faculty Club in Cambridge, MA
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Future of Health Technology summit 2010
- 1. Personal Informatics step to personalised medicine & healthcare
- 2. Personal informatics “... a class of tools that help people collect personally relevant information for the purpose of self-reflection and self-monitoring. These tools help people gain self- knowledge about one’s behaviours, habits, and thoughts. It goes by other names such as living by numbers, personal analytics, quantified self, and self-tracking.”
- 5. Implications self-awareness behaviour or data pattern recognition baseline & deviations personal & social feedback loops decision-making diagnostics clinical trials
- 6. Supply side regulation research & academia established complexity centralised and bureaucratic nature incremental, managed innovation institution-driven
- 7. Demand side need for cure, treatment, quality of life, chronic condition management individuals or communities emergent complexity, patterns distributed networks search for practical solutions - radical innovation individual-driven
- 9. Future is already here, it is just unevenly distributed... William Gibson
- 10. New kind of literacy
- 11. Further information Personal informatics http://www.personalinformatics.org/ Quantified self http://www.quantifiedself.com/ Body blogging http://www.physiologicalcomputing.net/ wordpress/?page_id=461 bodyblogger http://twitter.com/bodyblogger Moodscope http://www.moodscope.com
Editor's Notes
- “… 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?”
- Background from Physiological Computing: http://www.physiologicalcomputing.net/wordpress/?page_id=461 Body blogging 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. But while we may see this particular behaviour modification in a positive light, body blogs can also act act against the user. For example before the user associated sitting down after a brief stroll with a large drop in heartbeat rate, the first time they encountered this was not a pleasant experience for them. After coming into the office one day and sitting down the user became aware of their heart activity as the blood was pumping rather loudly. Out of curiosity the user checked the real-time feed and saw their heartbeat rate was far below (-10 beats per minute) their usual baseline of 60 bpm. Their heart was in fact registering their body as if it was in its sleep state (you can see this online by looking at the night tweets). Furthermore their heartbeat rate was still dropping at which point the user started to worry something was wrong. As their heart continued to slow this developed into panic and while their heartbeat rate eventually stabilised and returned to normal this experience which would of normally been ignored was only exacerbated by the user having access to their internal state.
- From Moodscope: How it works http://www.moodscope.com/about.php 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.
- Implications of individual patients or people of monitoring or self-tracking are rather interesting. 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 provided basis for change 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, it is institutions 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 emergence 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.
- 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 worth 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.
- All major innovations, especially the ones that come from the wild - namely, the internet - has occurred over a period of time, with the early adopters being positively non-mainstream. Incidentally, the same applies to the self-tracking crowd, to a ‘normal’ person, these people appear unnaturally obsessive, anal and in some sense 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.
- 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.