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Medical records

From Susi Harris

Monday, 20 January 2014

Quote from todays Guardian inckuding quote from a GP who happens to be medical director of the HSCIC - and how's this for muddled thinking? He said it was necessary to open up medical data to commercial companies especially as private firms take over NHS services to "improve patient care". Davies said: "We have private hospitals and companies like Virgin who are purchasing NHS patient care now. This is a trend that will continue. As long as they can show patient care is benefiting then they can apply."

Can you see any logic to this argument? I mean, what could he mean?

From Julie C

Tuesday, 21 January 2014

Maybe that explains why you can never get an appointment at Valley Road surgery - the Docs are too busy having meetings, thinking about Commissioning, trying to privatise the NHS, and sell our records, to actually see their patients.

Perhaps some other NHS GPs could challenge the local Docs contract and set up in competition - that would be fair wouldn't it, no more monopoly, a responsive, available and effective service.

I keep comparing Valley Road Surgery to the service to that I get at the Vets. Appointment straight away on a Saturday morning. When I got in the Vet welcomed the dog at the door by name, and had read the record on the screen before we arrived. Friends say, yes put you pay a lot for that service - my answer is that I and everyone else I know has been paying for the NHS all our lives.

That's how it's supposed to work. We all pay in and then draw out at need, free at the point of service. Clever idea isn't it, I like it, but not the way it is being delivered locally.

From Susi Harris

Thursday, 23 January 2014

So the glossy leaflets explaiining out medical records are about to be shared with 'approved suppliers' are out in Hebden Bridge now! You have four weeks from the date of reception or they will be shared before you can stop it

From Julie C

Saturday, 25 January 2014

I found a good article about this online - 9th Aug 2013 - "Private companies set for access to patient data for just £1."

It explains the whole situation very well, especially the fact that once companies have the data, there is the danger they will pass it on to other companies who can put it together with sources of information they already hold and work out your contact details etc. I reckon we need to make a fuss quickly, and find out how to opt out.

From Andy G

Sunday, 26 January 2014

So whatever happened to doctor-patient confidentiality and the Data Protection Act? People like my partner who work in the public sector can be fined thousands of pounds and get a criminal record for even accidentally disclosing personal information to a third party. However, now that the NHS is clearly being privatised by stealth, it must be OK for the private companies concerned to flout the law - or find a devious way round it. Give me strength!

From Liz D

Sunday, 26 January 2014

I called in to Valley Rd Doctors to ask about opting out and was given a leaflet/form by the receptionist. I could fill this in straight away or take it away to return later. I took a couple to give to people who might not be able to collect their own. On the form it gives more info and you can download it from here.

The data uploads starts in March and once your data is uploaded you will not be able to have it deleted so you need to act quickly if you want to opt out.

From Eleanor Land

Monday, 27 January 2014

My husband called in at Valley Road this morning, and was told they did not have any forms and knew nothing about them. He was offered the opportunity to have the sharing box on his computer record changed to "not sharing"

I wonder why the staff he spoke to appear to know nothing about the forms.

From Julie C

Monday, 27 January 2014

I was able to pick up copies of the leaflet off the Reception counter at Valley Road this afternoon. It has the wording "Important Changes To Your Medical Records" on the front.

In the text inside it includes the following:-"Details from your medical record will be extracted from the practice in a form that can identify you, and will include your NHS number, date of birth, postcode, gender and diagnoses (including cancer and mental health), their complications, referrals to specialists, your family history, details of your vaccinations and screening tests, your blood test results, your body mass index, and your smoking/alcohol habits."

Have they missed anything, I don't think so?

From Jenny B

Tuesday, 28 January 2014

I just clicked the link from Liz above and downloaded /printed one off. Posted it today. I think it does say on one of the links that we will all be sent one anyway.

From Deb S

Thursday, 30 January 2014

Thought this link might be of use

Just to point out that the staff at local surgeries don't make these changes. It is done nationally, so I think it is very inappropriate to blame a specific GP for these national decisions!

From Cllr James Baker

Tuesday, 4 February 2014

This is something I have been very invovled in campaigning against on a national level. NO2ID who I work with are holding an event over in Manchester on this that some people might be able to make it along to -

Threats to your medical confidentiality: NHS care.data
Tuesday, February 25, 2014
7:00 pm to 9:00 pm
Friends Meeting House
Mount Street
Behind Central Library
Manchester M2 5NS (map)

Significant changes to how your medical data is handled are happening now. Medical data that was previously under the control of your GP is going to be uploaded to a central location with in the NHS and shared with other organisations for a variety of purposes.

Phil Booth from Medconfidential will be on hand to answer all your questions.

Organised with FSFE Manchester and No2ID Manchester

Please let people know about this changes and also the medconfidential.org site where people can download the opt out forms.

I'm very angry about all of this, and how the opt out forms were not included in the mailing we got about it. Instead NHS England wants us to waste GP time by visiting them to opt out.

From Allen Keep

Tuesday, 4 February 2014

As I recall, Cllr Baker (Bedroom Tax supporter) was at best ambivalent about the privatisation of the NHS when debated in these pages (and I am being very kind indeed).

He seemed not to believe, as a mere local councillor, that he could influence his party to take an oppositional stance to the NHS "reforms" preferring to limit his role to "local" issues - speeding and dog poo or something (there's another thread on that James).

I agree with him on some of his civil liberties issues as it happens, credit where credit is due, but I have to say that "hoist by his own petard" springs to mind.

Welcome to the world of private medical care James - your party let it happen.

From Eleanor Land

Wednesday, 5 February 2014

Unfortunately our Coalition government believes that they are entitled to flog off our medical records to interested parties, and that we the public should have to struggle to prevent this happening. This proves we can no longer trust some politicians with our personal information. I shall be reflecting on this when I stand at the ballot box in 2015, and the two parties who have supported this invasion of our privacy will definitely not be getting a vote from me.

From Jon T

Friday, 7 February 2014

An article in 6th Feb. Guardian discusses back door access to the nhs data base even if you are opted out. It was said once that you should never hide the truth from your solicitor or your doctor but perhaps you don't want to share it with the state database.

From Cllr James Baker

Tuesday, 11 February 2014

Allen I've been campaigning on civil liberties issues long before I became a Councillor. I managed the NO2ID campaign against ID cards, which got awarded a Human Rights award from Liberty, and I've written and appeared as a speaker on privacy issues at many events and programs.

The justification for sharing people's private information has shifted under the coalition to an argument about the economic worth of the data. Under the last Labour government it was rather more framed in terms of security. The actual schemes have largely remained the same through changes in government, but the names and their justification have altered to appeal to the minister of the day.

Sadly the Tory mindset is as guilable to removing freedoms in the name of economic interests as the Labour one is to removing freedom in the name of security.

I do have to take some issue with your anaylsis of this being a product of privatization. In this instance GPs (which have been private contractors since the NHS formed) are being forced under legislation of the state (Health and Social Care Act 2012) to hand over the data to NHS England and the Health and Social Care information centre (a state organisation).

Once collected and compelled that data is then made available to other organisations within the NHS and also private and commercial organisations. What you have, as is so often the case, is a system where powerful commercial interests use the power of government to create a situation that is beneficial to their own interests.

What you have there is a form of corporatism, more akin to the East India Company. Powerful commercial and insituional interests within the UK get subsumed into the governmental system. In this instance Tim Kelsey a man who made is money setting up a company Dr Foster which collected and sold data back to government is now in charge with introducing a system where the government collects our information and sells it to private companies.

This is both the worst of statism and private vested interest working together. It upsets socialists, who frame it in terms of privatization, but it also upsets liberals such as myself who would rather a situation where people could trade and interact in a free market without laws and powers being used to confer benefit to powerful elites.

From Graham Barker

Tuesday, 11 February 2014

Just to amplify the point James Baker makes about the compulsion on GPs to hand over our data, this article makes clear how draconian it all is, and how little scope there is to resist it. I've opted out but have absolutely no confidence that this will safeguard my records. Once information is on any NHS system it can never be regarded as completely secure.

From Eleanor Land

Wednesday, 12 February 2014

All this subterfuge will result in is patients mistrusting their GP's with certain information. Not a good thing for the patient /practioner relationship. I believe the NHS will be disappearing in the very near future, the Tories hate it and so do the Lib Dems who have eagerly facilitated the Tory sell off.

They couldn't care less what patients think any more. We are there to be exploited. I have filled in my opt out form but am well aware I am almost certainly wasting my time.

From Susi Harris

Tuesday, 18 February 2014

No Eleanor I don't think you are wasting your time, I think the campaign is starting to make a difference:

12th Feb: RCGP voices concerns about care.data

15th Feb: More must be done to raise public awareness of care.data, says BMA

17th Feb: NHS crisis talks over introduction of patients' records database - Daily Telegraph

Maybe just maybe we can get this stupid thing halted and re-run in a genuinely pen and transparent way with genuine communication of the facts and choices and an opt-in!

From Julie C

Tuesday, 18 February 2014

Thanks for your efforts with publicising this Susi, but I have found lots of people I've talked to about it are still confused about which records will be disclosed to whom.

Many think that it is completely anonymous and untraceable, not realising that with a postcode and NHS number included this isn't the case. Some people also think that the record will be shared to help with their personal care, ie passed to a hospital treating them.

I think if the secondary records were genuinely anonymous, no NHS number and only the first part of a postcode, HX7, many people would not have a problem with sharing data with a limited range of researchers.
I am someone who has not had a leaflet come through my door, and I know of nobody else who has.

I found the leaflet I picked up from the Doctors' surgery, "How information about you helps us to provide better care" from HSCIC was unclear and unhelpful as it merges information about the two databases involved as though they were one. In fact, it never says in so many words - you can opt out of the 'secondary' database without impacting on your personal medical care.

From Susi Harris

Friday, 21 February 2014

Thanks Julie you are quite right its very confusing indeed. I believe this link will help explain:

Of course, as of Tuesday night it has now been delayed for 6 months, but don't forget, so was the Health and Social Care Bill and that was just to give DH time to persuade a few more MPs to vote for it! We are by no means safe until substantial changes are made. We need to see data anonymised at source, and an opt in instead of an opt out - to say the least.

You can now opt out from the comfort of your own armchair with just a few details and three clicks, thanks to the good people of FaxyourGP: who will - wait for it - fax your GP - requesting opt out on your behalf (this is a free service). They make the very good suggestion that you also request a confirmatory message from your doctor to ensure they got the message and have acted on it.

I would, until we get the changes we need to assure our privacy and our trust in our GPs - in fact I think I will do it again just to be sure….

From Susi Harris

Saturday, 22 February 2014

A very good article by Ben Goldacre in Guardian - and a very good letter by Neil Bhattia in the Telegraph.

My conclusion is that both are right that care.data needs extensive fixing and that Ben Goldacre is wrong about opt out - we do still need to opt out now, we can always opt back in later if improvements needed have been made and also, some practices are going to be used as pilots in the intervening time - who knows if HBGP will be one?

From Graham Barker

Monday, 24 February 2014

As this jaw-dropping news item in today's Daily Telegraph discloses, many millions of hospital patient records have already been sold and disclosed by the NHS to insurance companies. This entire process of hi-jacking personal data must stop right now.

From Eleanor Land

Monday, 24 February 2014

I have read the article in the Telegraph, thanks for the link. I am not surprised. It just goes to prove we should treat everything the government tells us with the disdain it deserves. Whenever they give us reassurances that our private information will not be sold off they are lying. They do it behind our backs and then expect us to vote for them. I'm am definitely convinced that filling in my opt out form was a total waste of time.

From Cllr James Baker

Thursday, 27 February 2014

I now have some information leaflets and opt out forms if anyone wants to join me to do an information stall for residents on the topic or want some leaflets then please let me know on campaigns@no2id.net

From Susi Harris

Friday, 28 February 2014

Stunning indictment of care.data by Ben Goldacre, well-respected no-nonsense scientific journalist who was in favour only 4 days ago.

From Susi Harris

Saturday, 1 March 2014

Extraordinary speech by Jeremy Hunt - the plan has been that the care.database that links up your confidential GP medical records and Hospital records will also be linked to your genome - would this be an electronic ID card by the back door? Now I'm really scared of this government


HebWeb Forum: Medical Records (Oct-Dec 2013)