Archives for March, 2008

PatientsLikeMe: openness hits medicine

There’s a great story by Thomas Goetz in yesterday’s NYTimes magazine about PatientsLikeMe, an online community for people with chronic diseases.

I’d read a little bit about patientslikeme before, but didn’t fully recognize the depth of their ambitions to collect and analyze patient data.

One of the most interesting things about PatientsLikeMe is the eagerness of patients to share their detailed data, and that the same cultural currents of openness that that have been driving social media seem to extend to traditonally private, personal clinical data. There is also a virtuous cycle of transparency – the more data people share, the more disease gets ‘demythicized’ and the taboos against discussion are broken.

It is easy to see the risks in patients trying to take off-label prescriptions into their own hands, and the opportunity for excessive optimism in interpreting uncontrolled trials and anecdotal advice. Transparency, however, is ultimately a good thing and the only way to ensure reliable data. The lack of transparency in traditional clinical trials is unfortunate, and results in missed research opportunities and too much potential for spin, truthiness, and quenching of undesirable results. Individual patients own their medical information, and ought to have the power and tools to publish, aggregate, and analyze data about themselves and each other.
Goetz also blogs at Epidemix, and has posted a related WNYC interview there.

03/24/2008 | openness, transparency | No Comments

‘internet addiction disorder’ and respecting attention

There’s a timely piece in the Times about taking a ‘secular Sabbath’ away from electronic distractions. Scoble and Roger Ehrenberg also recently lamented ‘attention thieves.’

I’m guilty too. There are precious few times in which I put away the blackberry: yoga class (@Karma) and dancing. And bed, I suppose. (usually).

Taking a break is obviously a good idea, but doesn’t address the core problem: what we really need are information tools that adequately respect and value our attention, and give us more control over our attention. I think there are three characteristics that many of these old and new applications need to adopt in order to let us focus better without cutting off cold-turkey: context, feedback, prioritization.


Traditionally, we had different physical places, times, and things for different tasks. To work, you went to the office. To read, you went to the library. If you were reading for work, you read the business section. If you were slacking off, you’d read the entertainment section.

We’re now free of such physical limitations, which is wonderful, but the result is that all of the streams of our activities flow to us simultaneously, and are presented to us merged.

We need to be able to set our context, and then have our software be humane and intelligent enough to respect it. Our IM status, for example, has busy / do-not-disturb settings. Such settings ought to be able to be applied across the whole gamut of information inputs, not just IM.

Feedback and Monitoring

Our information tools ought to help us monitor where our attention is going. Tools for analyzing clickstream, such as the early work from AttentionTrust and perhaps might help us see where attention is going. RescueTime is another neat application that lets us see where time/attention is going (or being wasted). And news.ycombinator has a noprocrastination setting that cuts one off after checking too many times. Making the behavioural changes to focus attention and lock out the attention theives is made much easier if software can provide the right sorts of feedback and incentives.


Software needs to do a better job at figuring out what messages are important and justify disruptions, and which can wait. The blackberry does a nice job of letting one configure different behaviours for different types of messages, such as ‘Level 1′ alerts that match a list of senders. But these tools are crude, and make use of little of the data which they might.

Humans are fallible, and media is often designed and evolve to steal attention, because it is valuable. Our software needs to be designed to recognize our finite cognitive limitations, avoid abusing our attention, and help us to stay disciplined.

Now back to real work!


03/03/2008 | attention, psychology, software, Uncategorized | No Comments