Today’s headline is taken from the menu for my Indian take away last night which talked of ‘exortic sauces.’ A spelling mistake it might be but I was rather taken with the idea of my curry sauce exorting me to savour its spices.
In a similar fashion do I feel the desire to devour all the exciting stuff that came out of my albeit brief appearance at the PatientsParticipate conference last Friday. It is the sort of science engagement that exorts you to explore, learn more and wonder…..
The US site PatientsLikeMe featured quite heavily in my session so I decided to post the link again for those who wish to follow the trail. For those new to it, patients can share their experience with others and this ‘data pool’ is increasingly becoming a bank for patients and researchers to find eachother with a view to trials etc.
The blog is pretty good too if you are happy to excuse the new media terminology about ‘mash-ups’ etc. It’s a real feast if I may to continue the food analogy.
[by the way if people have links of similarly interesting links I would be delighted to add them on the site)
PatientsLikeMe seems to be coming out daily with announcements about new ways in which people are using the site and also the partnerships they are forging with others and some of you may have views on the work they are now doing with pharmaeceutical companies.
Yesterday I had my first ‘induction’ meeting as Chair with INVOLVE’s excellent Director, Sarah Buckland. Although we didn’t talk about social media and PatientsLikeMe as such we did discuss the long-standing bias against user-controlled research and the degree to which science has not supported research and innovation led by it’s ultimate users, recipients or customers.
There comes a time when all traditional hierarchies are turned on their head by force of circumstance or societal change, change which they are unable or refuse to embrace. Coming away from my conversation with Sarah I wondered whether we are on that course now where social media and technological advances essentially mean that the tools are increasingly there for the pioneering patient or extrepreneurial member of the public to take control of their participation in ways that have never been envisaged.
To me, that’s terribly exciting. Challenging, but exciting.
To finish, and since I am in subversive mood, I thought I would finish by also signposting you today to Alice Bell’s latest blog which talks about the I’m a Scientist initiative that has been run by some universities. I am not going to steal her thunder by reiterating her story of what happened. But it sounded great fun and one of those instances where everyone comes away inspired by the connectivity of it all. She asks for suggestions of similar ideas – I quite like the idea of a Krypon Factor style contest in which combined teams of scientists and members of the public are pitted against one another to solve problems.
Now you know why I never became a tv producer.