[Open-access] Call for patient open access stories

Fri Feb 17 14:26:03 UTC 2012

Definitely!

I included the line
> Tell us your story of how access to the scientific literature helped you
or someone you know - maybe even saved a life.

but make this more prominent if you feel it gets lost.

Jenny

On Fri, Feb 17, 2012 at 1:09 PM, Mike Taylor <mike at indexdata.com> wrote:

> Thanks, Jenny.  We should say that we are also looking for GOOD news
> stories -- where access to research has helped -- as well as bad news,
> where lack of access has hurt!
>
> -- Mike.
>
> On 17 February 2012 13:02, Jenny Molloy <jenny.molloy at okfn.org> wrote:
> > 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
> >
> >
> >
> >
> > _______________________________________________
> > open-access mailing list
> > open-access at lists.okfn.org
> > http://lists.okfn.org/mailman/listinfo/open-access
> >
>
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