Not to want the NHS to share my confidential medical records?

[SusanC5]

I'm unhappy that any medical information that I share with my GP will be shared as from April this year I believe. My postcode and my NHS number could be released to "approved researchers".

I do not trust the NHS with my personal and confidential information.

AIBU?

YANBU - I am opting my family out.

It seems to be just England. We in Scotland don't have it. And yes GPs are opting out of it too.
There's not a lot in my past history that would identify me but it's the thin edge of the wedge isn't it. We do our utmost to keep records confidential and then this comes along.

We've had some fairly rare illnesses within our family that I've discussed on here. It would be very easy to link it all together.... DH went to some scary seminars on how easy it all is last week. I've got generally nothing to hide, but there are odd bits of my medical history I'd like kept private.

I shall be opting out.

Because although the current protections are strong, I do not believe that level of strength of protection will endure.

There are too many examples of access to data changing over time (DVLA anyone?) for me to be comfortable for my medical information to be in any more hands that it needs to be.

I would (and have) consented on an individual basis for personal information about me and DCs to be used by researchers.

But am not prepared to have my medical data with identifying tags in yet another database, accessible by yet more staff and sys admin, on the off chance it will be relevant to a possible research topic at an indeterminate time in the future.

Thank you for this - I did see the leaflet but as it came wrapped in a pile of junk mail it got recycled. Opting out for the family here too.

Yanbu

The worst that can happen is companies decode your information so you become unemployable because you had PND in 1990 for example. Your house insurance could increase, refused life insurance because Uncle Albert died from a heart attack. I can think of more.

Or people with gambling problems bombarded by jackpot (or what ever its called) that short of thing. It's really quite scary when you think about it

YANBU. This is nothing to do with healthcare and everything to do with profits for the pharmaceutical and other health related businesses. The potential risks of individuals and groups being identified are potentially profound (the insurance industry for one will be itching to get their hands on the information - yet more ways to wriggle out of claims or to deny cover).
It is yet another depressing example of how we are governed increasingly by those solely with the interests of business at their core while the needs of individuals and communities are completely ignored.

This info with links to the NHS info NHS England is interesting it suggesting that the information is going to be processed by ATOS
afterwork101.wordpress.com/2014/01/28/caredata/

Given what Mrsdavidcaruso said I am now wondering if ATOS plan to use information from medical notes to say people are fit to work who might not be.
Lets say you go to your GP for an appointment and talk about something you are trying to improve your health (lets say some exercise to improve your backpain under the guidance of a physio) ATOS then read that and assume if you can do exercise you are well enough to work. When your physio and GP both agree you are not well enough to do anything.
ATOS should not be involved in health care at any point. They have been proven to be rubbish at the "job" they already do.

Plus there was a story on Watchdog a few months ago where a man died of cancer, his wife tried to claim his life insurance as he was covered. They refused to pay out as he once went to his GP with pins and needles in his arm. He hadn't told the insurance company about it as it was just a minor ailment, though had informed them of the Cancer when he applied.
How long before people have their insurance refused or pay outs to loved ones refused because they once saw their GP for a rash or tingling (or other minor ailment) that they forgot to disclose (or didn't think to as it was no big deal at the time). Sharing info between the hospitals would be useful and helpful if you receive treatment across the country, and I would be all for that. Sharing with an outside source (beyond consultants ) is not a good idea.
I shall be opting out. I am too easily identifiable by my health conditions.

I was told that it wasn't relevant for children under 16 as they'd be so unlikely to suffer from any of the conditions that information is being collected on. So I couldn't opt out for her, apparently. Does this mean her information isn't being shared at all?

You can opt out for children. I've done it for my 5 year old. You were misinformed - the form linked to below, written by a concerned GP, even has spaces for a parent to add their kids to the opt-out.

Yes it is ATOS

uk.atos.net/en-uk/home/we-are/news/press-release/2011/pr-2011_12_20_05.html

YNBU! What form do you need to opt out does anyone know? My Dd is quite unique with health problems and I would rather her not have her information available for 'approved researchers'.

medconfidential.org/how-to-opt-out/

This is the link to a form and a letter you can use

You can't op out Children under 16.

I'm not bothered about it they are hopefully going to be able to use this data for medical research and may help them come up with links that they may never be able to do without expensive large scale research which. So could be a huge benefit to research. I'm aware that they could use it to look at people fit for work or helping them determine about privatizing the NHS. But I'm not really that worried about it.

You CAN opt out kids,I've just done it

Chunderella

Here you go. medconfidential.org/how-to-opt-out/

My docs just asked for it in writing via email asking me for names DOB and to state I wanted to opt out myself and the kids.

I've already had a email back confirming we will all be opted out.

Bollocks

medconfidential.org/how-to-opt-out/

Read the notes with this it does say children an be

I'm happy with the idea. Have moved several times in the last few years and anything that might help medical records move round gets my vote. Anything that also helps scarce resources be used properly is also fine with me.

as is anything that the pharmaceutical companies can use to develop new drugs. No-one does this for free.

IF the IT works to do all this, of course...

I'm glad that we are in a democracy and people can opt out if they want.

YANBU

I'm opting myself and my children out out of principle.

special you're confusing two different things. This isn't about your medical records being moved around.

It's about researchers being given NHS data. So it's leaving the NHS.