[HacktionLab] medical confidentiality campaigning (mark)

[Patrice Riemens]

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> Date: Sun, 26 Jan 2014 14:53:19 +0000
> From: mark <mark at aktivix.org>
> To: hacktionlab at lists.aktivix.org
> Subject: [HacktionLab] medical confidentiality campaigning
>

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> Dear Hacktionlabers,
>
> * PLEASE DISSEMINATE F.A.O. anyone campaigning for electronic privacy,
> human rights (right to health, right to a private and family life),
> and against commodification of personal information *
>
> You all might have heard (if you live in the UK) that there's a big
> change coming to the way your GP protects your privacy.
>
> Previously, identifiable data was only shared with 3rd parties if it
> was to assist in providing medical services to you; data for other
> uses had to be anonymised. From this April however, your personal
> information WITH IDENTIFIERS INTACT will be uploaded to a central
> body, which will then sell it to anyone. Your GP is obliged to do this
> unless you opt out.
>
> You may have had some junk(snail)mail with misleading information
> about this scheme. It tells you to speak to your GP practice if you
> want to opt out. However if everyone who should opt out did this, your
> GP and receptionist/secretary would be inundated and so unable to help
> people when we need it most. Instead, here are some alternative
> resources. Anyone who works in health and social care might like to
> print a bunch of forms out and leave them in a waiting room.
>
> Downloadable PDF opt-out form (suitable for a GP waiting room):
> http://medconfidential.org/wp-content/uploads/2014/01/caredata_trifold.pdf
>
> Two websites with more information:
> http://optout.care-data.info/
> http://medconfidential.org/
>
> Cheers,
> Mark


We have the same problem in the Netherlands, with added prpaganda about it
being absolutely needful in case of emergencies and strong protection of
your data behind 'unbreakable' cyber-walls, and shared by only 1600+
'trusted' instances. Opting out is even more difficult since the data is
retained at the GP level, not individual patient. Basically the whole
surgery has to opt out (whereupon the surgery will promptly be
de-certified by the health insurers ...)