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Care-data programme

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Care-data programme

Postby BoJangles » Thu Sep 04, 2014 10:17 am

I recently had cause to visit my GP (I don't go very often) and was greeted with a form/leaflet if I wished to opt out of the scheme. After reading the details I immediately opted out and brought more forms home for family to sign. I read all the relevant links on the net that were included in the form and have to admit, I am horrified in more ways than one and glad that the scheme has been delayed. Needless to say I passed this info on to family.

For saying we all 'apparently' had leaflets through the door earlier this year, everyone I have spoken to had not heard of this care-data programme. My sisters GP surgery were vague and have given her the wrong form to fill in and informed her that my GP surgery were wrong. My sister took mum to her doctors who appear to know nothing about it at all.

Whilst I can download or pick up a form from my GP surgery for mum to fill in and sign, it would appear that there is no other submission route other than the persons GP surgery so I feel yet another battle is to commence in trying to protect an elderly vulnerable person.

I cannot see any benefit in the confidential data being released and sold but I am open to views and opinions that maybe I have over looked?
Note: I am not a lawyer...just learnt a fair bit on that hideous road called litigation
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Re: Care-data programme

Postby Hairyloon » Thu Sep 04, 2014 2:16 pm

BoJangles wrote:I cannot see any benefit in the confidential data being released and sold but I am open to views and opinions that maybe I have over looked?

Of course there is a benefit: someone will make money out of it.
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Re: Care-data programme

Postby Slartibartfast » Thu Sep 04, 2014 10:32 pm

I think it's a scandalous proposal. Very sensitive health data will be piled into a far-from-secure database, which will be generously available to drug companies, private health providers and public bodies. Commercial 'partners' will be allowed to copy out huge blocks of data, protected only by their promise that they will respect confidentiality.

An excellent repentant commentary here, from Ben Goldacre - www.theguardian.com/commentisfree/2014/ ... s-in-chaos

Good opt-out templates here - https://medconfidential.org/how-to-opt-out/
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Re: Care-data programme

Postby Russell » Thu Sep 04, 2014 11:31 pm

This is a great project as part of a scheme of projects. There are some truly massive big data, especially by the Wellcome Trust, with DNA. Illness patterns, co-morbidity and family history links etc. This can and will be turned into real world interventions

We are entering a new era of medicine (well until the money runs out).
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Re: Care-data programme

Postby b1969 » Fri Sep 05, 2014 10:32 am

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Re: Care-data programme

Postby diy » Fri Sep 05, 2014 2:15 pm

I think conceptually its not a bad thing, but its just very dangerous, because as others have said it wont be secure and will only be the start.
My suggestions are not legal advice
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Re: Care-data programme

Postby Boo » Sat Sep 06, 2014 12:54 pm

As a side issue, I would prefer not to have to give out my full address when picking up a prescription at a pharmacy.
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Re: Care-data programme

Postby Slartibartfast » Sat Sep 06, 2014 11:36 pm

I just wish they wouldn't shout to their colleagues across the pharmacy "Has Mr Slart's syphilis ointment come in yet?"
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