Medical records

[stillaboveground]

I have just seen on you tube that Matt Hancock has put a scheme in place which will allow your medical information, (every single personal and private detail) to be sold on to 3rd party data lists. This is yet another scheme that has been sneaked in through the back door, you have only until the 23rd June 2021 to opt out, not a lot of time when it isn't widely known yet. There are supposed to be notices about this in your doctor's practice, but has we have not been able to enter the practices for the biggest part of a year you will probably not have seen this. Take care and keep safe. Ruth

[Lezzers]

You can sign yourself out of this. Your surgery will be able to tell you how, though I think you just need to sign a form

[stillaboveground in reply to Lezzers]

Thank you,

[Hidden in reply to stillaboveground]

To fully opt-out from having your NHS data used for purposes beyond your direct care is a two-step process:

1) If you have concerns and want to stop your and your family’s GP data being taken from your GP practice for purposes other than your direct care, you can do so by filling in and giving this ‘Type 1’ form to your GP practice. (This form allows you to include details for your children and dependants as well.) This is the most urgent step; the deadline to get your form to your GP is 23rd June 2021, according to NHS Digital.

2) If you want to stop your non-GP data, such as hospital or clinic treatments, being used/sold for purposes other than your direct care (e.g. for “research and planning”) you should also do the following:

· If you are opting out just for yourself, use NHS Digital’s online National Data Opt-out process – this process only works for individuals aged 13 and over.

· If you have children under 13, you need to fill in this form and e-mail or post it back to NHS Digital – this form works for both you and your children.

Type 1 form

medconfidential.org/wp-cont...

Online Opt out for yourself

nhs.uk/your-nhs-data-matter...

Opt out if you have children under 13

assets.nhs.uk/nhsuk-cms/doc...

[stillaboveground in reply to Hidden]

Many thanks Gaz_chops. Take care keep safe. Ruth

[Nettekin]

Wow. Do you know if this is just NHS England, or will it apply in Wales as well?

[stillaboveground in reply to Nettekin]

Hi Nettekin, I am not sure but it could be, it wont hurt to look into it. Take care. Ruth

[Hidden in reply to Nettekin]

Hi Nettekin. I saw this on 'WalesOnline' last week. Anyway, I have 'Bookmarked' it and still in the middle of reading it! So much to read, gov.wales/Public Health Wales/NHS Wales. Whether we will be the same, is a different matter!!

[Nettekin in reply to Hidden]

Hi snowflake. Thanks for the info. Doesn't seem to suggest Wales is affected yet. But may well only be a matter of time. X

[Hidden in reply to Nettekin]

No problem. I've only had a quick look at it. We will have to wait and see then! 😊

[Hidden]

Please all read the NHS links carefully before panicking. These records are being used by health institutions and drug manufacturers to treat us more quickly if we are admitted to hospital or visit a medic who does not know our problems.

The use of records led to a swifter development of the covid vaccine than would have been without hemThey are not being sold.

Advertising, marketing and insurance companies will not have access to them.

There is a lot of deliberate information out there designed to undermine faith in the NHS. Similar to anti vaxxing.

Please arm yourselves with the true facts before being pushed into action by these people.

[Hidden]

It isn’t a wholesale data dump, but it is to make data available for development of drugs and treatment. We should look at it all and then decide whether we wish to opt out of1, our GPs sharing our records for purposes of our treatment

2. The sharing of our records for the development of drugs and treatments.

Or both.

I for one am grateful that I have benefitted from treatments, drugs and vaccines which have been developed by data sharing.

[Chappychap]

I wasn't aware of this so thanks for posting.

I'd like to learn more before deciding about opting out or opting in, but despite searching a couple of newspapers I'm struggling to find anything.

Does anyone have a link to a credible source that advocates/supports this initiative, or at least analysis the arguments from both sides? Does the BHF have a position on this, for example are they considering using this information in their research?

Thanks again for raising this issue.

[Milkfairy Heart Star in reply to Chappychap]

This might help

hdruk.ac.uk/helping-with-he...

[Chappychap in reply to Milkfairy]

Thanks for the link, I’ll read with interest.

[Hidden in reply to Milkfairy]

The link doesn’t work for me!

[Milkfairy Heart Star in reply to Hidden]

Try

hdruk.ac.uk

Or search for

BHF Data Science Centre

[Hidden in reply to Milkfairy]

Thx

[Hidden]

COPI should have informed you what would happen to your details when you signed up. I have done several trials over 30 years and have always known whether they were going to destroy them or gave my permission for them to be shared for further research. It isn’t a case of which information is harvested, rather whom it is shared with.

NHS assure us that this will not be shared with advertising, marketing or insurance companies. ( Although everyone should be aware that when they take out holiday insurance they are giving permission for the company to obtain medical details from GPs in the case of a claim).

If you are concerned read the NHS website links on this and to ensure that you are going to remain opted out of 2, fill in the online form.

[Hidden in reply to Hidden]

It's all about making 'informed' decisions.

[Hidden in reply to Hidden]

Indeed

[Hidden]

You are right that we should know what is happening and I hope that we inform ourselves. It would be awful if you were left anxious after generously taking part in a trial. I can understand why the legislation was imposed in that one case, given the urgency of dealing with covid. We can’t say that we aren’t informed about the latest sharing policy as it is on the NHS website with the option to refuse. Personally, I am not bothered.

[Hidden]

Quotes from one article I read -

"When a similar GP data grab was attempted before, junk mail leaflets were sent to households. That programme failed. This time, patients could and should have been written to, as millions of people have been throughout the Coronavirus pandemic."

"After the failure of a similar data grab in 2014, NHS England undertook that any subsequent collection of GP data would be in a safe setting only. However, that promised safeguard is now entirely missing."

[Mirador19]

Does anybody know if this ruling applies to Wales? Thank you in advance.

Joan

[Nettekin]

Of course there are many points of view about the rights and wrongs of this. Personally, I need to read a bit more about it I think, and make a decision before Wales follows suit. What I don't need to think about is this use of information by stealth. I am not a fan to put it mildly! The fact that the information about what is to happen is on the NHS Digital website is almost irrelevant. Who reads that on a regular basis? An online search eventually turned up the info I was looking for, but it wasn't there in plain sight.

It also seems very suspicious that this is introduced after a period where fewer people than ever before haven't been inside their GP office.

An article in the FT reminds us that this was tried previously in 2013 in a plan called care.data. It lasted until 2016 when it was abandoned over concerns about confidentiality and commercial use.Take care and happy decision making!! 😁

[TWit2-U]

Thanks for the info.

[stillaboveground]

Thank you all for your replies, I would have been happier if we had to opt in instead of having to opt out. I am aware that research needs people to agree for their records to be used in some cases, but it seems this time the records are being sold to anyone and everybody. Stay safe. Ruth

[RufusScamp]

When I was admitted to hospital 18 months ago, it felt as though the entire medical school was invited to listen to my lungs. They all asked permission, and I would never have refused. I had an angiogram performed by a learner who made mess of it. I would not complain because I appreciate that students have to learn, and I value our free (on demand) health service, just as I gave blood for a cup of tea and two biscuits. But if my data is shared without my consent, that is a different petrie dish of bacteria.

[stillaboveground in reply to RufusScamp]

I quite agree with you, the thought that other people can obtain my medical records and profit from them infuriates me. Take care. Ruth

[gladliz in reply to RufusScamp]

I agree entirely. I have no objection to my medical records being available to other GP 's or Hospitals. Never know if you are going to be taken ill or have an accident away from home but that's it. I do not want a load of commercial/ambulance chasers knowing all about me and bombarding me with information about stuff I have no interest in.

[stillaboveground in reply to gladliz]

Hi gladliz, I quite agree, I can just imagine every medical insurance company on my phone all the time and my car insurance going sky high because I had an ingrowing toe nail when I was a teenager. Getting out of hand. Take care, keep safe. Ruth

[gladliz in reply to stillaboveground]

Funny you should say that. I did have an I growing toenail when I was a teenager, had to have it removed. Hope my insurers never find out about it. 😊😊

[stillaboveground in reply to gladliz]

Hi gladliz, just be careful who you talk to, don't tell a soul. 😊