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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*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. 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.

Engage or become irrelevant

There has been a lot of commentary around the blogosphere about [Sergey
Brin](http://too.blogspot.com/)â€™s [blog
post](http://too.blogspot.com/2008/09/lrrk2.html) in which he announced
that his SNP profile includes one variant which significantly increases
his risk of developing Parkinsonâ€™s disease. The [mainstream
media](http://www.smh.com.au/news/biztech/google-founders-shock-announcement/2008/09/19/1221331178163.html?page=fullpage#)
seem mostly to be desperately concerned about the potential for the
ignorant masses to be misinformed about what the results of such tests
would mean and the potential for people to make unfortunate decisions
based on them (based on that argument Iâ€™m not sure why we are allowed
to have either credit cards or mortgages but never mind). The other,
related stream, which is found more online is that [this is all a bit
meaningless](http://www.thehealthcareblog.com/the_health_care_blog/2008/09/23andme-gets-un.html)
because the correlation between the SNPs
[23andMe](https://www.23andme.com/) measure and any disease (or indeed
any phenotype) are weak so itâ€™s not like he *knows* heâ€™s going to
get it â€" [why not get a proper
test](http://www.thinkgene.com/i-dont-want-a-23andme-i-want-the-real-genetic-tests/#)
for a proper genetic disease?

I think this is missing the point â€" and I think in fact, his post
could represent the beginning of a significant change to the landscape
of medical funding â€" precisely because that correlation *is* weak.

In the western world we have been talking for decades about how
â€˜prevention is better than cureâ€™ yet funding for disease prevention
has always remained poor. Itâ€™s not sexy, it is often long term, and it
is much harder to get people to donate money for it.Â  Rich people
donate money because relatives, or they themselves, are already ill.
They are looking for a cure, or at least a legacy of helping people in
the same situation.

The [Health Commons](http://sciencecommons.org/projects/healthcommons/)
project run by [Science Commons](http://sciencecommons.org) has as its
aim the reduction of the transactional costs involved in getting to a
drug. If you can drop the cost of making a cure for a disease from \$1B
to \$1M you have many orders of magnitude more people who can afford to
just â€˜buy a cureâ€™ for a loved one, themselves, or to make themselves
feel better.Â  This vision, and what it does to global health, even if
the success rates are relatively low, is immensely powerful. And it
needn't apply just to drugs, or to cures.

But Brin doesnâ€™t want a cure necessarily. Actually thatâ€™s not true
â€" Iâ€™m sure he does, his mother has Parkinsonâ€™s and his great aunt
suffered from it as well. Anyone who has seen someone suffer from a
degenerative disease would want a cure. But equally, heâ€™s a smart guy
and knows just how tough that will be, and how much money is already
going into such things.Â  But he can now look at his genetic profile
*now* and look at which diseases he is predisposed to get. He can look
at which of those he is really worried about. And then he can dig into
his pocket and decide what the most efficient use of his \$15B fortune
is. Sure he will put millions into developing treatments, but the smart
money will go on research into prevention or slowing onset. He has the
time before any likely onset to allow programmes on prevention to run
for 10-20 years before he will need to take a best guess on
implementation.

And the point is that there will be a growing number of people having
only the probabilities based on SNP data to work on making similar
judgements about a range of diseases. And don't believe that if we have
full genome sequences those probabilities will get any better either.
More precise yes. Better linked to phenotype? Not for a while yet.
People who get these tests done donâ€™t know exactly what they will get,
but they have an idea, and they might have that idea up to 50 years in
advance. Now consider what happens if the costs of developing methods to
prevent or delay onset drops to the point that millionaires can make an
impact. A thousand or maybe a miillion-fold more people with a deep
interest in preventing the onset of specific diseases, an understanding
of risk-based investment, and the money *and the time* to do something
about it.

Preventative medicine just became the biggest growth area in medical
research.

p.s. [Attilla gets
it](http://pimm.wordpress.com/2008/09/19/sergey-brin-gly2019ser-a-real-chance-against-parkinson-diseaseaging/)
-- he's just thinking regenerative rather than preventative -- maybe
they are the same thing in the end?


There has been a lot of commentary around the blogosphere about Sergey Brinâ€™s blog post in which he announced that his SNP profile includes one variant which significantly increases his risk of developing Parkinsonâ€™s disease.

Messaggi di Rogue Scholar

Engage or become irrelevant

Why a 25% risk of developing Parkinsonâ€™s really does matter