If you haven't heard of Care Data sharing or do... - Thyroid UK

Thyroid UK

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If you haven't heard of Care Data sharing or don't know whether to opt out...

11 years ago•17 Replies

You may have had a leaflet from NHS about sharing your medical records, or you may have recycled it as another piece of junk mail. Your records will be identifiable, they'll have your birthdate, postcode and NHS number. If you don't opt out by emailing or writing to your GP practice before end of March, your private medical records will be uploaded, shared and sold not only to researchers but private companies ie commercial insurance cos, pharmaceuticals, private care providers. Have a look at the flow chart which addresses issues not covered in the NHS flyer. sochealth.co.uk/2014/02/04/...

I emailed the following to my GP practice:

Re: Health & Social Care Act 2012

Please block the uploading of my personal and identifiable information to the HSCIC.

Written by

Clutter

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17 Replies

•

11 years ago

I opted out yesterday. My GPs surgery have had so many people ringing about opting out that they've created a form for people to fill in and sign.

Hampster

Moggie11 years ago

My doctors have also created a form and will be taking myself down there on Thursday to complete one.

Thanks for the reminder

Moggie x

11 years ago

Oh i was on it like a maniac and already hand delivered my opt out letter to NHS. Remember , you MUST do it again even if you have opted out before

Clutter• in reply to11 years ago

Are you talking about the summary care record? That's a totally different thing to this.

11 years ago

Thanks for posting. I had no idea was someone supposed to send me something??!!

Clutter• in reply to11 years ago

NHS sent a leaflet which they probably banked on being dropped into recycle boxes without a second glance. Had you read it you wouldn't have got the full picture anyway as it was vaguer than a vague thing.

• in reply toClutter11 years ago

What a waste of NHS time and money. You'd think they would inform people properly if they're going to waste precious resources on it. Not much point in having posted them out really is there?! I'm sure I haven't had anything though. I've emailed my surgery to enquire...

CarolineC5711 years ago

I definitely haven't received any NHS leaflet - I'd have looked at it before putting it in the bin. I did get something from the doctors a while ago - but I guess that must be the summary care thing you refer to above, Clutter? I need to pick up a prescription from the docs (in fact that's just reminded me - I meant to do it today!) so I'll ask about it then. Thanks for the heads up!

Neeta-K11 years ago

Thanks Clutter. I have sent an email to the practice manager on opting out. It's on their website which I'm sure nobody reads!

11 years ago

Locally my doctor appears to be unable to share my records with a department to which she has referred me. Recently (perhaps on here) I saw a story that doctor's surgeries and local hospitals are unable to share information. It will take a lot of (ill) will to identify a patient from the stats available. In the unlikely event the NHS gets itself together enough to share data I hope some good may come of it - particularly for unsung thyroid patients like us. They're welcome to my records. This isn't, you understand, to poo-pooh fears you and many others have about this putative data sharing - just to put another viewpoint.

Clutter• in reply to11 years ago

I'm considerably inconvenienced by the necessity to travel to a hospital for blood tests which can't be done locally because the hospitals and GP practice can't share information electronically.

It irks me that NHS England have devised a way to extract information nationally for sale but can't address local issues which would be beneficial to local people.

I have fundamental objections to my private health data being sold to commercial companies who have an eye to their shareholders not my wellbeing.

It's been said that there is no money to be made from thyroid meds so my thyroid history isn't likely to promote thyroid health. If it was likely to I would not withhold my consent. Point being I want to know what use is being made of my private records and can consent or refuse on that basis.

Mostly, I do not want the likes of Virgin Care et al to cherry pick illnesses they will deal with from NHS records, whilst undermining NHS at the same time.

Further, I was refused critical illness cover in my 20s. I do not, to this day, know whether this was as a result of my own health history or that of my parents. I would be loath for my niece, for instance, to be refused cover because an insurance company had been able to link her to me and discovered something in my health history which deemed her to be a poor risk.

• in reply to11 years ago

I do just wonder whether stats may give the lie to the old saw that there is no money to be made out of thyroid patients and, therefore, no point in researching malfunctioning thyroids (various). A trawl through relevant statistics will, surely, reveal that a lot more people suffer with malfunctioning thyroids than is suspected. If 'they' were to look through unresolved patient problems alone they'd probably find many of those fit the thyroid bill. If the NHS is so on its uppers that it needs to sell this data ... well, it's a sad but not unforeseen day.

I take the point that insurance companies will seek to use these stats to identify who has to pay high premiums. But screening for predispositions and charging as a result is, perhaps, a separate argument which we're going to have to have down the line anyway?

11 years ago

pulsetoday.co.uk/your-pract...

Clutter• in reply to11 years ago

Sleazy slimeball bullies!

FXP_OK8 years ago

Only anonymised records are "sold" to commercial operations and only under very strict guidelines. And what is wrong with that? The NHS is trying to avoid the ludicrous scenario where everything is done on paper at great expense and low efficiency. What sense is there in one doctor in one establishment not being able to see the records created about the same patient at the same time in another establishment. It's called joined up thinking and it's for our benefit.

Clutter• in reply toFXP_OK8 years ago

FXP_OK,

3 years ago records were not sufficiently anonnymised and were identifiable. I have no problem with my records being shared within the NHS and for non-commercial research on paper or electronically if they are non-identifiable but I'm not willing for my medical records to be shared commercially.

Clutter8 years ago

Care Data Sharing and opting out has been superseded by new NHS England initiatives so this thread is now closed to new replies.