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?

See, if it was just going to be shared with medical researchers, I'd be fine with that (though it's a bit pointless, there's nothing interesting in my records)

But I'm not ok with it being shared with insurance companies and other businesses like that.

I really don't think it will be.

Sorry, Chunderella, been out all day and only just saw this - sock has it covered, but there's actually a pro-forma letter I used which supplies the two codes a practice needs to append to your notes to block data extraction here. It specifically says you are also opting out for your dependants, and has space to name them.

As I understand it this does nothing to directly improve the standard of care or speed up access to my records.

It does mean that anyone with enough money can access my personal information, in the same way as I don't want my electoral role information to be sold on - I in no way want my medical records available, especially with a changing legislative environment - once its out it is out- if it becomes advantageous to share for whatever reason I can opt in.

Exactly, timefora...

I cannot believe how people are saying that this is not a big deal and nothing to get worked up over.

Wake up, folks. Don't let them have your details for ALL the reasons posted above. It is a big fucking deal.

Also they tried this on a few years ago. They wanted to access all medical records. I remember this because I went through the exact same process of removing permission. Then it all went quiet.

Why the fuck am I having to withdraw permission yet again?

Captain because its a different data base - the national spine that the tories got rid when they got in, the summary care records - the latest one and even the local based ones (vision 260 here on the island ) was about treating you and knowing what medication you are on.

This is totally different as its not about treating people but about mining data for other reasons ( and none of them good) the read codes that go on your medical records to stop them being used are different, therefore opting out of SAR and Local systems will NOT stop your data being used for care.data.

its a pain but you have to do it.

I am getting the form and opting myself and my family out.

If you value your medical confidentiality, you should opt out.

Me too. I must say, I don't like the sound of "Approved Researchers". They won't be fucking approved by me so I'll be opting out.

Your data could be sold to big Pharma if you don't opt out. If you don't opt out, their shareholders will be made richer by using your "free" info. We all know how ethical big pharma is don't we? I worked for three of them before buggering off to the public sector. It was the best thing I ever did.

Yabu. Large scale research on anonymised patient record forms is going to further a lot of medical research. What exactly is the problem? Your name won't be seen by anyone and your details could do a lot of good.

It's hardly anonymous when it includes key data like post code, NHS numbers, Dob etc etc.
That is my objection.

I trust that my information will be used to forward research as much as I trust that my electoral role details will mean more appropriate marketing - it wont .

We live in big data now, if you cross checked your tesco club card, credit card details, insurance, dvla records with your medical records at what point does it stop being useful and start being intrusive?

I think this is a huge issue - and the government are relying on people reading the leaflet, wrongly assuming that this will help them in some way should they turn up unconscious at A&E miles from home, that it is anonymous and could be used to further medical research, and so on.

The fact that it is bloody difficult to opt out, that they are not even bothering to send a letter to each household but sending out junk mail that will be easily overlooked or missed, that they are stripping out just names from the data when they could have chosen to strip out many more details to make it much more anonymous, the fact that the 'researchers' that the data can be released to include companies who will be able to profit from it (and often at your expense) and so on, is all a huge red flag that this is not a good thing. If it was such a good thing for individuals that they would want to sign up for, then they would have let people opt in. But when there is something tricky like this, the way that they make it happen is to choose the default option as the one that they want and put as many obstacles as they can in the way of letting people opt out.

How are people going to like it when Tesco buys the database to cross with their clubcard database and it will then be pretty easy to figure out who is who as they will have several overlapping data points for each person - when you start getting offers for weight watchers baked beans and oats because you are flagged as being overweight - or tena lady pads as you'd enquired about being a bit leaky or pregnancy stuff because they saw that you were pregnant (even before you have started to tell your own family!) and all other sorts of promotions that would be incredibly intrusive and you wouldn't want others to know about, let alone handing over vouchers to the person on the checkout.

I know the medconfidential site, as already mentioned, and a few others are doing great things to try to raise awareness of this. I wonder if this is something that Mumsnet could use it's clout to raise awareness of two - even just by putting a fixed link at the top of the active list for a couple of days, along with links to the forms for opting out. What do people on here think?

If the government were truly interested in doing epidemiological studies with the data then they could have really made it anonymous and they could have restricted access to proper epidemiological researchers. Letting anybody who waves cash in front of them and who has the resources to have their own database or access to the electoral role and can thus just stick names back on to the data means that this has been set up purely and simply to flog and get money from.

I'm not in any way special so if someone knows in what ways I've been ill and when and what I was treated with, I really really can't see the problem... I was brought up by a nurse who was always very upfront about body issues and functions and seriously can't understand why anyone would give a crap what others know about the way their bodies function/don't function.

I know I'm uncommon in that way of thinking though.

I've have some serious mental health issues that led to me living totally abnormally for years. Whoever wants to know is free to know. I'm not ashamed. I have a body, part of it stopped working for a while, so what? If someone wont employ me for it that's fine, I don't want to work for them.

There will be some exceptions, and some people may have valid reasons for wanting to keep info private but I don't think the majority do.

Oh and the other thing is that it is important to opt out now - as if you don't, you can't ever opt out again. Whereas if you decide that you trust the system and you do want to opt back in, then you can, whenever you want...

And yes, definitely opt your children out now - don't be fobbed off by being told it's not relevant to them. It certainly is. Let them decide to opt in when they are older!

I'm opting out. I don't trust private companies with my data. NHS shared care - I'm happy to be part of that, but care.data is completely different.

Penguin - it's not so much that I mind anyone knowing per se.

It's what they might do if they do know that I worry about more. For example, I don't want to end up paying more for insurance because they think I might be more of a risk because I am overweight or got PND or whatever. Or a prospective employer who doesn't even bother to interview me because they can't be bothered to find out about who I am now, they have been scared off by a bit of medical history they wouldn't ever normally have known about. It's the Big Brother-ness of it all that worries me.

The irony is that it can be difficult to get hold of your own medical records to look at (I know it is a bit easier now, but you still have to pay for the privilege and have to jump through some hoops) - and yet they are willing to open them up to people for a fraction of that cost, who will use it to profit at my expense... And of course - that's all assuming that the records are correct, no mistakes in them or rude comments from doctors or things misfiled that belong to a different patient...

And in this day and age, they aren't guaranteeing that it will be safe or not hacked. So it could end up in the wrong hands - and they will be able to extricate my mother's maiden name and bingo - instant access to lots of things like my online banking where that is one of the identifiers that other people shouldn't have.

DH works with Big Data systems - 50 million records is thought of as a small database. Popping two databases of this sort together and running it through a bit of text analysis is pretty easy already.

The trouble is that in principle the idea is good. Brilliant in fact. However in practice it doesn't work, as it relies too much on the information being used in good faith for exactly the way that is detailed. The trouble its too weak to be policed and far too open to abuses that have already been shown to be hazards. Used in isolation the data is anonymous, but if used with other data, it really isn't. The problems will eventually become apparent, but by that time the damage will be done and it will leave a lot of people disadvantaged as a result. Whats worse, is the vagueness of what the data may be used for in the future too.

some people may have valid reasons for wanting to keep info private but I don't think the majority do.

But why should anyone need a "valid reason" as decided by someone else?

YABU (although I understand the concern). The data will be shared in anonymous way, as a medical professional who has worked for both private companies and the NHS I can't begin to tell you how useful this data will be - in research terms it will be a huge leap forward. The data will also be used to make sure that local medical services meet future needs, for example if there are lots of people in an area with diabetes or cancer then it makes it possible for the NHS to plan ahead and meet those needs. Similarly if lots of people in a certain area are getting a particular type of cancer (for example) then research might be done into the cause. Yes companies may profit from the data, but if drug companies didn't make profits they wouldn't make drugs. And that would be bad.

I'm not a data expert but it does sound like the data which leaves the NHS will be suitably anonymised, so leaving a laptop on a train (which will happen, it always does!) shouldn't be a huge issue. There's no chance of this data sharing being used to affect your employment or insurance prospects, the existing safeguards on that data will remain in place.

It's also nothing to do with sharing your info so that paramedics or a&e can have access to your records, that's a whole other kettle of fish (and an IT minefield apparently).

You can opt out easily - it's not hidden - just tell your GP practice.

No one needs a valid reason, but people basically think their individual records are just SO important, and MUST be private, and for the majority all I can think is 'get over yourself, nobody gives a shit about your records, you're an insignificant one in millions'

That sounds harsh but I think people are worrying about it too much.

I'm not going to bother opting out. Maybe I'll be proved wrong later in life. I'll let you know :o

I could imagine being one of the approved researchers so it doesn't bother me. I worked with anonymised patient data 22 yrs ago and we just used it to look for things like unmet needs or raised incidence of specific diseases. We didn't have access to data like previous address or occupation; those things might have been very useful.

I'm just speculating here, but suppose that people who most opt out might have a raised risk of certain problems; so it's their group who will most miss out by their group problem not being detected. This is a big deal in terms of identifying social injustice.

I assume objectors also don't have loyalty cards or bank accounts. Would never put their personal details into an online form, etc.

Whether ATOS will find a way to balls up security is another problem, though.

...wait, when you join MN you're supposed to enter truthful details like your name, family member's birthdays etc. So you objectors all trust MN more than you do ATOS? Coz I know which group has more security staff to protect their database & deeper pockets in case they balls up & need to pay compensation.

Penguin I agree, people's medical records are dull dull dull. The woman who lived at SE8 4PP had depression in 2004 fascinating… let's blackmail her with this information.