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.

Cameron Neylon

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[![Crowd being turned back at Coliseum (LOC)](http://farm3.static.flickr.com/2397/2163131283_1ca4831df4_m.jpg "Crowd being turned back at Coliseum (LOC)"){decoding="async"}](http://www.flickr.com/photos/8623220@N02/2163131283)
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*Friday and Saturday last week I had theÂ privilegeÂ of attending the
first [Sage Congress](http://sagecongress.org). 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](http://sagebase.org/), the wider [Sage
Commons](http://sagebase.org/commons/index.html), 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](http://www.chordomafoundation.org/about/view.aspx?id=2)'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](http://en.wikipedia.org/wiki/Anne_Wojcicki) talking about how
[23andMe](https://www.23andme.com/) 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](https://www.medcoresearch.com/people/repstein) 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
reduceÂ hospitalizationsÂ caused by warfarin. And contrast it with Josh
Sommer's work with the [Chordoma
Foundation](http://www.chordomafoundation.org/), [Gilles
Frydman](http://twitter.com/gfry)'s with [ACOR](http://www.acor.org/)
and the [Society for Participatory
Medicine](http://www.facebook.com/participatorymedicine?ref=ts), or the
many other examples at the congress; services like [Patients Like
Me](http://www.patientslikeme.com/) where patients w*ant* 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](http://www.galaxyzoo.org "Galaxy Zoo"){.zem_slink
rel="homepage"} 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 theÂ balance of power in research,
probably irrevocably. I think that is probably a good thing.

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Image by The Library of Congress via Flickr
<em>
 Friday and Saturday last week I had theÂ privilegeÂ of attending the first Sage Congress
</em>
<em>
 . 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
</em>
do.  This is not a post about public engagement work by scientists. It is not about going to schools and giving talks.

Rogue Scholar Beiträge

Engage or become irrelevant