[Open-access] Call for patient open access stories

[Jenny Molloy]

Hi Graham and Gilles

I'm not sure how closely you're following the new @ccess group but we're
trying to rapidly gather stories of where open access (or lack of) has
helped or hindered people.
Mike has created the following site http://youneedaccess.wordpress.com/ (NOT
YET PUBLIC - please keep the URL within this list for the time being)

Would you be able to put out a call to your patient networks? I've drafted
one below but feel free to shorten it and change any of the wording to
something you feel will encourage responses. We want people who are willing
to go on record publicly.

Let us know your thoughts!

Jenny

@ccess for all

We believe that the output of publicly funded research should be available
for everyone to read, from dentists to small businesses and students to
citizen scientists. Most importantly, it should be available to you. We
know how much patient groups value access to scientific knowledge and how
rapidly the latest findings turn over. Instant access is crucial, you want
rapid progress for yourselves, your relatives and friends.

We plan to develop tools to assist access to disease specific research and
enable communities and patient groups to interact wth the scientific
literature more easily. We also want to demonstrate to funding agencies,
policy makers, publishers and the general public just how important open
access to this kind of information is, to ensure that we take postitive
steps towards universal access to research.

However, we need your help. Tell us your story of how access to the
scientific literature helped you or someone you know - maybe even saved a
life. Do you have an example of where lack of access to research has been
detrimental to someone's treatment or wellbeing?

We want to provide a platform for these stories to raise awareness among
people who may only understand open access as an academic movement.

If you could contribute please contact jenny.molloy at okfn.org with your
story.

We are also interested to hear from people who would like to help guide the
development of tools for patient groups to discover, discuss and share
research, particularly by suggesting features you would find useful. You
can follow @ccess by joining our mailing list
http://lists.okfn.org/mailman/listinfo/open-access
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