[Open-access] Call for patient open access stories

[Mike Taylor]

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
>
>
>
>
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