NHS Summary Care Records - Centralised database for personal health information

Has anyone received information about these? The plan is for all our health information to be placed onto a central database so that wherever we are, if something happens to us, the healthcare providers dealing with us will be able to see our medical history.

It all seemed okay in essence but I have concerns, such as data confidentiality (remember the loss of the child benefit details), etc. and I am not keen on all my personal information being in one place where it could be hacked into, or whatever. Plus, who will be given access to it in future? People we work for? Insurance companies?

I sound suspicious but I'm not over the moon about the idea. There is the possibility of opting out but we are opted in automatically.

The BMA said this:

"Roll-out of summary care record should be slowed down

OnMedica Staff

Monday, 1 March 2010


The BMA believes the roll-out of summary care records is happening too hastily and that it should be made easier for patients to opt out.
The summary care record provides limited key information about a patient’s health and history. The belief is that making this information accessible to a wide range of NHS services, when required, will improve patient care.
Following limited local piloting, five strategic health authorities have announced that summary care records are going to be uploaded to a central database across England.



Anyone who does not want to have a summary care record has to opt out by informing their GP or by completing a form either downloaded from the internet or requested through an ‘0845’ national call centre.


Dr Grant Ingrams, chair of the GP IT Committee, said: “The summary care record roll-out is now happening too hastily. While we believe it has the potential to improve both the quality and safety of patient care, we are concerned at the speed because it means patients are very unlikely to be aware of what they are automatically being enrolled into.”


“We would like to see it rolled out carefully area by area in a properly supported and evaluated fashion. This should ensure it improves patient care in the way it is intended to, whilst also protecting patient confidentiality.”
An independent evaluation of the pilots found that seven in ten patients didn’t not know what the summary care record was, so were not aware that their details would be uploaded onto a national database.



John May from the BMA’s patient liaison group said: “There needs to be a higher profile national information campaign to ensure everyone can make an informed choice about whether or not they want to be included.



“We also think it is important that opting-out is made easier. At the moment there’s no opt-out form in the patient information packs being sent to patients across the country. They either have to take the time out of their day to go and see their GP, or phone a call centre, or download a form from the internet and post it in.”"


http://www.onmedica.com/news/5af769f4-d4fa-49de-a380-78ce47bfdc8c/roll-out-of-summary-care-record-should-be-slowed-down

Yes all 4 of us have had the forms a few weeks ago. I thought it was quite a good thing at first... eg perhaps if you were in a different part of the country and had to go to A&E, they could see your basic info. I did actually wonder about any info that people may not want flying about the country as it were. I do think though that the letter said it was more mundane info that would be seen. I assumed stuff like allergies, medication etc which could make a difference to what could be prescribed.
I have to say that mine will be a short file as apart from the usual smears and mammogram I haven't been to the dr's for 10 years, so the nurse told me at the last smear!!!
I suppose we can opt out later if it all goes pear shape (stable door/horse???)

Yes, it's possible to opt out later, although I don't think the information is ever deleted. I think it's possible to 'cherry pick' to a certain extent what is immediately seen.

Thinking about it some more, I think I will opt out and keep an eye on things over the coming months. It has been a bit of a hash in terms of the computing side too.

I remember how our car number plates have been sold to car parks - I realise this is a bit different but the possibilities for mis-use are there.

I just read that some GPs are unhappy with it too:

London GPs helping patients opt out of huge NHS database

Potential threat to key strand of national programme

By Leo King, www.computerworlduk.com SHARETHIS.addEntry({ title:'London GPs helping patients opt out of huge NHS database', summary:'Potential threat to key strand of national programme', icon: 'http://path.to/icon' }, {button:true} ); ShareThis
GPs in London are helping patients to opt out of digital care records, in a move that could present a major threat to the central part of the £12.7 billion National Programme for IT.


As the controversial rollout of summary care records continues in London, under England’s £12.7 billion NHS National Programme for IT, doctors are providing alternative information from that sent officially send to patients by the NHS.
A number of doctors and patients have raised strong objections to the programme.

While the records are intended to provide out-of-hours hospital clinicians with crucial access to patient records, doctors’ body the British Medical Association has heavily criticised the fact patients are automatically opted in, saying people needed to be “treated like adults”.

Patients have also said they are worried about the security of the data, and potential risks of “mission-creep”, where the data is given to other organisations including research firms. There are also concerns that the amonut of data on the record will grow beyond what patients expect.

This week, the Londonwide Local Medical Committees, which represents 6,000 GPs, is sending posters to local GP practices to show patients how to opt out, alongside patient fact sheets and easy opt-out forms. It said it was concerned that patients were only given 12 weeks to respond to an NHS information letter if they wanted to be exempted from the system.

The LMC information advises patients to opt out if they are unsure what to do, because a lack of action over 12 weeks leads to a record being permanently created. It said in a statement that concerns had “been expressed” that the short time frame was “far from ideal”.


http://www.computerworlduk.com/manag...m?newsid=19036

I agree with the concerns, esp about who has access.

If it was _just_ your appointed GP, a specialist you were seeing, or a hospital you were administered into for say an op - I think that would be ok.

Why can't they make it so that whenever someone wants to look at your file they have to get your permission first? You'd think it'd be that easy wouldn't you

Well, the leaflet says they will and that 'in time' we will be able to access it and change things such as addresses. That's the thing, in essence it all seems okay. It's just that I don't trust these central database ideas in terms of data protection and confidentiality - this Government has a poor record with our personal information so far and abusing our rights.

A similar system in Scotland has already been abused - see this article:
http://www.theregister.co.uk/2010/02/26/nhs_patient_record_privacy_concerns/
Computer boffin on NHS Spine: Get out while you can

Summary Care Record summarily slammed
By John Leyden • Get more from this author
Posted in ID, 26th February 2010 12:10 GMT
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A leading computer scientist has sounded a warning over an NHS data collection plan, urging patients to opt out.


The Summary Care Record (SCR) scheme will make outlines of medical records available to hundreds of thousands of NHS staff in England. The idea is to provide doctors and nurses in England with easier access to information on patients registered with other doctors without having to call or fax their main medics.


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But the approach is fraught with privacy pitfalls while offering questionable clinical benefits, according to Professor Ross Anderson of Cambridge University.



Anderson notes that a similar system was abused when it was introduced in Scotland by a rogue medic who snooped into the medical records of health records of prime minister Gordon Brown and SNP leader Alex Salmond. The doctor concerned was spared prosecution for hacking because of his own medical problems.


The SCR scheme is billed as a means for medical staff to have easier access to information on whether patients are allergic to drugs such as penicillin, but even this limited ambition is liable to fail. "It won’t be available abroad (or even in Scotland) so if you are allergic to penicillin you’d better keep on wearing your dogtag," Anderson argues.


The roll-out of summary care record (“The Spine”) in London has been accompanied by efforts to educate patients about opting out of the scheme via posters and leaflets in general surgeries. By default, patients will be enrolled in the scheme.


Anderson welcomed this action by doctors' organisations while criticising Labour plans to talk up the supposed benefits of the scheme, which he views as one move towards the bigger threat of a database state. Both the main opposition parties, Conservatives and LibDem, oppose the scheme.
A Department of Health spokesman sent us the following:

Patients have at least twelve weeks to decide if they want to have a Summary Care Record and, together with GPs, have had several sources of information on how the records work and the opt-out process made available to them. All patients have the right to opt out and they can also change their minds at any time. To date, over six million patients have been sent standardised public information packs about Summary Care Records through regional Public Information Programmes. GPs can also direct patients with further enquiries to the dedicated NHS Care Records Service Information Line and the NHS Care Records Service website http://www.nhscarerecords.nhs.uk/Standardised information packs for GPs are also available on the Connecting for Health website.
The patient and GP packs are being supplemented with local awareness and engagement activities such as drop-in sessions and local media coverage. Emerging benefits in Out of Hours and End of Life care in early adopter areas are increasingly winning the support of clinicians.
As regards timescales, this will largely depend on PCT readiness. Roll-out of Summary Care Records is gathering pace. As of 19th February 2010, 1,190,418 Summary Care Records had been created and over 6,000,000 patients had been written to as part of a Public Information Programme.
The opt-out rate remains consistently below 1%.
Approximately 80% of GP practices now have a compliant SCR GP system. The NHS Informatics Planning 2010/11 states that PCTs, as commissioners, should agree a timeline with their SHA for the creation of SCRs at all SCR-compliant GP practices in the financial year 2010/11. It should be stressed that Summary Care Records will not be created immediately after the 12-week period in which patients have to make a decision, but over the timeframe outlined above.

I've definitely decided to opt out for now and see how things progress over time.

I have not heard about this before, but a simialr system is in use now in social care and health and has in my opinion been essential in improving the care of vunerable people.
Its not accesible by just anyone and only those relevant. I had to get permission to access it and you can be audited for the useage, so its checked on.
It sounds similar so im all for it, seems sensible to have all your history in one place.

Awww blimey. Typically (of me) I can see both sides of the debate! On the one hand yes its a reasonable idea to let the people who need the info access to it....but on the other hand, we don't have a great track record for keeping things secure do we???
As I said before, all 4 of us hardly see the doc so there's nothing in our records medically speaking to be concerned about. It would be a whole different ball game if there was anything in them that I wasn't happy for Tom, Dick or Harry to see. So I do understand the concern.
I shall wait and see for a while methinks.