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 but all you have to to do is fill in a form to say that you do not consent to the sharing of your info and they will opt you out. I hate the idea as those of us with rare or several medical concerns will be traceable to a degree

WTF? Shared with whom? What exactly does "approved researchers" mean I wonder .

This is the first I have heard of this but no YADNBU! Confidentiality with regards to medical records is definitely not something I'm prepared to give up.

What is wrong with the current system of asking permission for this sort of thing?

I'll be getting myself a form then.....

But what if information that is contained in your records, that is anonymised, could help someone else?

I've just found out that I have a significant chance of developing a particular type of cancer (actually I'm still going through tests to make sure that I'm ok at the moment). I've signed up to do a DNA test to go on a permanent database. I've got absolutely nothing to hide, so why not

A disc or laptop will be found on a train within a year, full of data, mark my words.

Discs and laptops are already being found on trains - this change isn't going to improve matters!

I understood that 26 million forms (no wonder we've got a huge deficit!) are being distributed to households in the UK, and we simply choose to share or not to share.

If it's sharing amongst NHS only, so if I'm taken ill in Torquay my records can be immediately accessed, it makes sense. If it's a case of distributing my details so that all and sundry can contact me to try and flog kitchens, it's another matter!

And, honestly, if the data is anonymised so that only an NHS number is known, what's the problem?

Sorry, I don't mean to offend but his genuinely perplexes me

I bet the info that will be found on a train won't be anon

I've opted out. Quite easy to do, just ask to speak to your GP surgery's Practice Manager and fill in a form.

Again, multiple medical issues make me very identifiable.

I also carry around a copy of my (RELEVANT) medical notes (redacted, and copied under a FoI request, and only the bits that are necessary, such as those stating WHAT my illnesses are, and those stating what medication I take, and at what dose, for which issue. And those stating my meds allergies)

And, honestly, if the data is anonymised so that only an NHS number is known, what's the problem?

The problem is that the "anonymised" data will be trivially easy for companies with significant data about you to de-anonymise.

There is not a chance in hell I would allow my medical data, my most private and sensitive data, to be shared in the way proposed.

Here is a link to an article:

www.theguardian.com/society/2014/jan/19/nhs-patient-data-available-companies-buy

You won't receieve a form, you'll receive a leaflet with your junk mail. You can opt out but they don't tell you how. They just say "contact your GP" (as if they didn't have enough to do). You should write a letter to your surgery saying you want to opt out of care.data.

Ok, I'm going to be very naive here, but what is honestly the worst that can happen?

I'm quite willing to accept that this is just my own, odd point of view btw - I generally couldn't give a bugger who knows what about me (apart from bank details etc, in which case I'm quite prepared to be called a hypocrite!)

Well lots of people do care what other people know about them.

Why do you think doctor-patient confidentiality is such a big deal?

Why is medical data the most protected of information that can be held about a person?

Because people CARE about their privacy.

They don't want everyone to know that they have piles/a colostomy bag/urinary incontinence/OCD/terminal cancer.

The worst that could happen is that people would have no ability to control what large, profit-making corporations could know about their health conditions.

Fucking hell

I shall be opting out, thanks for highlighting this

Shocking idea, but it would be very very funny to see how the info would be used for marketing.

I'm kinda having images of it being a bit like the substitutions with online shopping

YANBU

medconfidential.org have an opt-out form on their site

Ok first of all ajandjjmum please do not confuse the data sharing with the data base held under the summery care records this data base is NOT being used to ensure that your medical records are accessed to provide YOU with medical care in the situation you describe.

Read this link medconfidential.org/how-to-opt-out/ this gives you more information and shows you how to opt put - use the opt out form on here or the letter with the read codes and you wont actually have to make a Drs appointment to opt out.

This link lynwhitfield.wordpress.com/2014/01/26/caring-about-care-data/ will also give you more information. so will the forums on NO2ID and @medConfidential twitter site.

What people need to remember that once your data is out there you cant stop it, the information on the leaflet tells you that the information is controlled by law it might be using the law as it stands today - but laws can be amended and changed through the years so the laws that control how your data is used today may not be the same ones used in Jan 2016.

It is also stated that your information may be shared in the public interest but who decides what is in the public interest - quick answer it aint the public .

And yes the 28 million of forms were sent out but THAT was at the request of GPs who were first told to inform their patients as and when they made an appointment, GPs rebelled against this and when people like NO2ID got wind of it the NHS had to backtrack and make people aware they could opt out, the fact that there is no form and people are being told to make an appointment to see their GP proves very much that
they dont want us to opt put and will make it difficult, mind you the NHS have a track record to trying to stop people opting opting out of their data bases, it was the same for the national spine (the Labour one) the summary care records data base and local data bases (like Vision 360 used on the Island

Oh and I have read that 40% of GPs themselves are opting out - cant find a linky

That's great, thank you newyearhere. Will print off and drop in tomorrow when I'm at the midwife. Was wondering how to ensure effective opt-out, so a pre-done letter with both required codes cited is incredibly handy.

Ok, I'm going to be very naive here, but what is honestly the worst that can happen?

It's going to include NHS number, date of birth, postcode and gender. That's not what most people would regard as very anonymous, and it will be extremely detailed data on every aspect of your medical history - mental health, serious illness, vaccinations. Everything. It is not being widely advertised, the junk mail leaflet is dropped through doors with very vague info and no details on how to opt out, and once on that system (many people won't even know they were put there) you apparently cannot opt out. And none of it is used for your own benefit. None of it will be available to any healthcare professional outside your GP practice - "approved researchers" hasn't been clarified, either. But it includes commercial entities - drug companies and insurance companies - neither of whom have reputations for the most stellar ethical standards.

we simply choose to share or not to share.

Nope. You are assumed to want to share unless you write a letter to the contrary. Nobody will ask you, and no opt-out form is provided by the state. And if you don't opt out before being entered on the system, according to the link newyearhere provided you cannot get it removed later - despite never having agreed in the first place.

Is this just england or across the whole of the uk?

It seems to be England? But I'd call my GP wherever I lived in the UK, just to be sure.

The info here is really troubling. For a start, the info extracted from your GP will not be anonymous when sent across to HSCIC. They're the ones who will determine how much info to remove, and even if to. An exemption, so they can pass on identifiable info, has already been granted to commissioning bodies. And secondly, the GP info is just the start - the second round will be data about us stored by hospitals, and the third social services involvement, if any. HSCIC stands for Health and Social Care Information Centre: it's not only about what drugs you've been prescribed. And this not-very-disguised data is buyable by private companies.

Yanbu.

couthy I would have thought with what seem like such strong views that you would know the difference between FOI and data protection. Clearly not but your medical records are nothing to do with the freedom of information act.

Information about you is held in accordance with the data protection act. Other information about bodies which use public money is available under the freedom of information act.