Engage or become irrelevant

Crowd being turned back at Coliseum (LOC)
Image by The Library of Congress via Flickr

Friday and Saturday last week I had the privilege of attending the first Sage Congress. Hopefully this will be the first in a series of posts that cover that meeting because there is simply so much to think about and so much to just get on and do.

This is not a post about public engagement work by scientists. It is not about going to schools and giving talks. It is not about engaging with the main stream media to present your work to the great unwashed. It is about engaging with the people who will be driving your research agenda within ten years, about how the way researchers connect with society will be changed over the next decade whether they like it or not. The aim of Sage Bionetworks, the wider Sage Commons, and its constituent projects is nothing less than to change the pace at which medical research operates. An aim that was put forward seriously as a twelve month goal in one of our breakouts was to document three use cases where information from the Sage Commons had made a difference to a patient. The scientific details are perhaps less important than the delivery plan; an open plaform for laboratory and clinical data, linked to detailed models that explain that data, and ultimately to tools for clinical staff and laboratory scientists to use and crucially to contribute back to where appropriate.

As you might expect expect the meeting included scientists, technologists, policy people, funders and publishers. It also included a significant number of patient advocates and by the end of the meeting, for me at least, they were at the core the project. This might not be surprising if it were just as motivation for getting things done. Josh Sommer‘s enormously powerful talk was pitched perfectly to spur the group to action. I cannot do it justice, but will link to the video when it is available. But that was only half the story. The second half was when these same patient advocates got up at the synthesis session at the end of the meeting to say they had formed their own workstream. Their aim? To get Stephen on Oprah. Again publicity and information for “the public”, support perhaps and help in fundraising. But to focus on that is still to miss the point.

A second hand conversation was related to me in which a major agency representative had said “we will never make data public”. I have sympathy for this view. Such agencies need to protect their standards, and this includes an absolute adherence to privacy policies and validated ethical procedures. But contrast that with the talk from Anne Wojcicki talking about how 23andMe get enormous response rates on questionaires containing deeply personal questions where the aggregate information will be made public. Contrast it with the talk from Rob Epstein of Medco talking about cold calling patients to ask if they would be willing to contribute to rapid testing programmes to see whether genotyping can reduce hospitalizations caused by warfarin. And contrast it with Josh Sommer’s work with the Chordoma Foundation, Gilles Frydman‘s with ACOR and the Society for Participatory Medicine, or the many other examples at the congress; services like Patients Like Me where patients want to push data out, both because they get valuable information back for themselves and because they want to make a difference. We are rapidly moving towards a world where networks of patients might refuse to sign up for trials that don’t commit to making the data publicly available.

People like me tend to advocate getting funders to push for policy change, because they hold the pursestrings and are best placed to push through change. One thing we’ve often forgotten is that they are simply intermediaries. They are not the real funders, and they don’t provide the only form of funding. Increasingly they don’t hold the real power either. In clinical research the patients involved are directly funding your work as well as indirectly through their taxes or charitable donations. They are perhaps the biggest funders of medical research; donating their time and hard won information about their state of health. They are also the most effective advocates of that research. The engagment group at the congress didn’t stand up and say “we want to help”, they stood up to say “you need us to succeed in your aims”.

What projects like GalaxyZoo show us is that when you effectively enable an engaged portion of the wider community to contribute to your research that you can increase the pace by orders of magnitude. “The public” is not some homogeneous group of barbarians at the gate of our ivory towers. They are a diverse group, many of them interested in what researchers do; many of them passionately interested in some specific thing for a wide range of different reasons. In a world where the web enables access and communication, and enables those with common interests to find each other, people who are passionately interested in what you are doing are going to be increasingly unimpressed if avenues are unavailable for them to follow and contribute. And funders, including those ultimate funders, are going to be increasingly unimpressed if you don’t effectively tap into that resource.

The need to actively engage with, not at, the wider community as active contributors is shifting the balance of power in research, probably irrevocably. I think that is probably a good thing.

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Euan Adie asks for help characterising PLoS comments

Euan Adie has asked for some help to do further analysis on the comments made on PLoS ONE articles. He is doing this via crowd sourcing through a specially written app at appspot to get people to characterize all the comments in PLoS ONE. Euan is very good at putting these kind of things together and again this shows the power of Friendfeed as a way of getting the message out. Dividing the job up into bite sized chunks so people can help even with a little bit of time, providing the right tools, and getting them in the hands of people who care enough to dedicate a little time. If anything counts as Science2.0 then this must be pretty close.

A funny thing happened on the (way to the) forum

I love Stephen Sondheim musicals. In particular I love the way he can build an ensemble piece in which there can be 10-20 people onstage, apparently singing, shouting, and speaking complete disconnected lines, which nonetheless build into a coherent whole. Into the Woods (1987) contains many brilliant examples of the thoughts, fears, and hopes of a whole group of people building into a coherent view and message (see the opening for a taste and links to other clips). Those who believe in the wisdom of crowds in its widest sense see a similar possibility in aggregating the chatter found on the web into coherent and accurate assessments of problems. Those who despair of the ignorance of the lowest common denominator see most Web2 projects as a waste of time. I sit somewhere in the middle – believing that with the right tools, a community of people who care about a problem and have some form of agreed standards of behavior and disputation can rapidly aggregate a well informed and considered view of a problem and what it’s solution might be.

Yesterday and today, I saw one of the most compelling examples of that I’ve yet seen. Yesterday I posted a brain dump of what I had been thinking about following discussions in Hawaii and in North Carolina, about the possibilities of using OpenID to build a system for unique researcher IDs. The discussion on Friendfeed almost immediately aggregated a whole set of material, some of which I had not previously seen, proceded through a coherent discussion of many points, with a wide range of disparate views, towards some emerging conclusions. I’m not going to pre-judge those conclusions except to note there are some positions clearly developing that are contrary to my own view (e.g. on CrossRef being the preferred organisation to run such a service). This to me suggests the power of this approach for concensus building, even when that concensus is opposite to the position of the person kicking off the discussion.

What struck me with this was the powerful way in which Friendfeed rapidly enabled the conversation – and also the potential negative effect it had on widening the conversation beyond that community. Friendfeed is a very powerful tool for very rapidly widening the reach of a discussion like this one. It would be interesting to know how many people saw the item in their feeds. I could calculate it I suppose but for now I will just guess it was probably in the low to mid thousands. Many, many, more than subscribe to the blog anyway. What will be interesting to see is whether the slower process of blogospheric diffusion is informed by the Friendfeed discussion or runs completely independent of it (incidentally Friendfeed widget will hopefully be coming soon on the blog as well to try to and tie things together). Andy Powell of the Eduserv Foundation comments in his post of today that;

There’s a good deal of discussion about the post in Cameron’s FriendFeed. (It’s slightly annoying that the discussion is somewhat divorced from the original blog post but I guess that is one of the, err…, features of using FriendFeed?) [Andy also goes on to make some good point about delegation – CN]

The speed with which Friendfeed works, and the way in which it helps you build an interested community, and  separated communities where appropriate, is indeed a feature of Friendfeed. Equally that speed and the fact that you need an account to comment, if not to watch, can be exclusionary. It is also somewhat closed off from the rest of the world. While I am greatly excited by what happened yesterday and today, indeed possibly just as excited as I am about yesterday’s other important news, it is important to make sure that the watering and care of the community doesn’t turn into the building of a walled garden.