"Better information means better care?" - Don't be fooled.

[Sali]

I felt the need to revive this post when I read Pulse magazine's article on GP records being shared without permission.

 

http://www.pulsetoday.co.uk/your-practice/practice-topics/it/gp-records-to-be-shared-without-patient-permission-to-tackle-high-cost-patients/20010180.article#.VXmR_FLvmJp

 

One of the aims of NHS Southend CCG is to identify 'high-cost' patients to review their care.

 

It seems that the CCG will not be sending letters to patients prior to launching this scheme, but will embark on a 'comprehensive communications plan' (their words) using social media, public events and signposting in GP practices.

 

So what do you think? Not only am I cynical about their true goals, I would be extremely nervous if my identifiable data were floating about the ether, without doubt, flimsily protected.

 

Pulse also reports (and I have heard this elsewhere) that a large number of patients who attempted to opt-out of the care.data fiasco have been ignored.

 

Trying to get redress or apology from the NHS (or any other public and private body) for failures and mistakes or to place trust in the competence and efficiency in organisations like the ombudsman, or ICO, is a process that will damage even the strongest person. Better to prevent than cure - but it seems that the thimbleriggers are trying to thwart us at every turn.

[nolegion]

"In September, GPs in pathfinder sites are due to start writing to patients about the care.data programme and six weeks after that data extracts could begin.

 

If it goes ahead, it will be the first substantive move for the project which aims to link patient data from GP record systems with hospital data for secondary uses.

 

The project is due to be tested in more than 100 pathfinder practices before wider roll-out. A total of 54 practices from Blackburn and Derwent and West Hampshire CCGs have signed up."

 

From:

http://www.gponline.com/gps-caredata-pilots-prepare-schemes-launch/article/1358393

(04 08 15)

 

 

If any forum contributor in the relevant areas gets a GP letter on this, it would be v. useful if they could post a copy online for examination.

[nolegion]

I think this lamentably-executed project will probably rear its head again early next year.

 

I found a link today (below) which refers to recent developments in the ongoing fiasco.

 

For any 'new viewers' a summary of the history to the current position as discussed in this thread, in my view, goes like this:-

 

1. The care.data" project which intended to collect personal data about all NHS patients from GP computer systems and then use it for purposes wholly outside any patient's control, fell over calamitously shortly after its January 2014 launch. Few were convinced that the 'anonymisation' of such data was secure, and many claimed there should have been an 'opt-in' as part of the process, rather than an opt-out - which 'NHS England' didn't even provide a 'slip' for in its 'promotional-junk' leaflet, in any event

 

2. Even as the initial fiasco ground itself to a swift and ignominious halt, by virtue of the failed attempt it became apparent to many who, like me, were previously unaware of it, that the 'Health and Social Care information Centre' (HSCIC) was already gathering personal data about patients from other healthcare providers e.g. hospitals and mental health Trusts, and flogging it to those wholly unrelated to any healthcare of the individual patients concerned – such as insurance companies.

 

3. Not surprisingly, so alerted, several hundred thousand patients considered the position and told their GPs that the didn't want the HSCIC to do any such thing - which, although rendered thoroughly obscure by the care.data 'promotional junk', was an option those patients were entitled to choose, irrespective of the failure of the proposed GP 'data extraction'. (Thank goodness for the net.)

 

NHS England thus not only failed to get the project off the ground, but shot itself in the foot on the runway.

 

4. It got worse. NHS England found itself unable to implement the instructions thus provoked and to stop the HSCIC processing the data it was already collecting, because of its managerial and technical incompetence – and, it is now said by the Information Commissioner's Office, because of lack of ministerial instruction.

 

See the latest, here:-

 

http://www.ukauthority.com/news/5832/caredata-cleared-for-patient-opt-out

[silverfox1961]

So, what that article is telling me is that although I gave an opt out form to my GP, data could still have been released in the interim period. IF that has happened, the faecal matter will be hitting the rotating air inducer.

 

The next question will be, who do I ask? My GP? the information Commissioner or the HSCIC?

[nolegion]

SF,

 

A. Yes. The HSCIC may well have 'shared' your (non-GP) medical records (albeit supposedly 'anonymised') with third parties not involved in your care, despite your specific instructions to the contrary. Indeed, it appears they may well go on doing so until some time in January (always assuming they actually get it right, even then).

 

Everyone seems satisfied, though, that no 'data-mining' of GP medical records themselves has taken place where patient prohibitions on this were in place.

 

B. Complaints. In fairness to GPs, there is nothing they have been able to do about the HSCIC\NHS ENGLAND\DoH behaviour. I know several GPs who are highly resentful of the way the whole process has been 'dumped' on them from above, compromising the trust of patients. The ICO would, in the first instance I have little doubt, merely refer you their toothless 'decision' the article refers to. The HSCIC responds to FOI requests, but I strongly suspect, will deny it's susceptible to DPA subject access requests and the like.

 

Break some ground on that last point, and let us know? Could be wrong. Other than that…your MP?

 

All further suggestions gratefully received. I suspect that all hell will break loose on this, again, early next year.

[nolegion]

‘1.2m patients continue to be ignored over objections to record sharing.’

 

http://www.pulsetoday.co.uk/your-practice/practice-topics/it/12m-patients-continue-to-be-ignored-over-objections-to-record-sharing/20031645.fullarticle

 

Jeepers.

[silverfox1961]

And this from the Daily Mail

http://www.dailymail.co.uk/news/article-3571433/Google-s-artificial-intelligence-access-private-medical-records-1-6million-NHS-patients-five-years-agreed-data-sharing-deal.html

[Guest]

yeah, i saw that info re google on the bbc site. incredible that that transfer of such specific info can just be done nowadays without the individuals consent?

[Sali]

Yes, I heard about this. Hundreds of patient records handed over to those cloven-footed ladies and gentlemen at Google, without any consultation with those concerned. We are told that the data is not identifiable, but I recall this was falsely claimed in the care.data project? They say it is for the 'greater good,' - so only the selfish would object!

 

 

The NHS is not free. It is paid for through taxation, something which ironically Google, (crooked in its morals whilst remaining lawful) artfully avoids paying in the UK.

 

 

I do not believe for one moment that Google has an altruistic bone in its corporate body. Yes, of course, they'll spend many man hours and money building programs to (perhaps) provide useful output, but then they'll flog it back to us and sell the model on to others. Quids in.

 

 

Our data belongs to us. Data should only be released if we opt-in. Consent should never be presumed.

[Guest]

it says in that dm link'...the NHS is obliged to pass on some anonymous medical information if it is intended for research purposes to improve care...'

but is it entirely anon?

 

is it not poss to request to a hospital that data is not shared outside of the nhs, unless with consent?

ps, the dm article says poss so, but is that actually the case.

[Sali]

Yes, exactly, how do you opt out and do you have to opt out of every hospital in the country, since you never know where you could end up in A&E? I think this is really wrong of the NHS. It has rather a poor record on data security.

[nolegion]

So. Farewell then

'care.data'.

 

I would like to know

how much your fiasco

cost us

all.

 

Get on and

share this information

with us

now

 

(with no

opt-out).

 

[E.J. Cribb, 97 &3/4 (in the shade)]

 

 

Ref:-

 

https://www.theguardian.com/technology/2016/jul/06/nhs-to-scrap-single-database-of-patients-medical-details

[Guest]

cheers for that nolegion.

now to see whats happening with hospital records, eg post #60/61...

[Sali]

Care.data may have been killed off, but our private medical data is still being handed over to third-parties without our consent or knowledge. This is unacceptable.

[Conniff]

Care.data may have been killed off, but our private medical data is still being handed over to third-parties without our consent or knowledge. This is unacceptable.

 

Why is it unacceptable ?

 

Personally I don't care who knows what illnesses I've had or what treatment I've had.

[citizenB]

Conniff, I think it is unacceptable because the sharing will not be for the purpose of another hospital/GP surgery being able to access your records so they know you are allergic to penicillin or other health care issues - but for the purpose of big business such as Insurers.

 

 

I discovered that the likes of Dentists and Opticians would not have access to these records - strange - because both of those organisations will be able to identify if you have heart issues/diabetes - throat cancer ,etc. So why would they be excluded ?

 

 

I opted out when this was first mooted back in 2008 - I still have the copy letters which I sent to my GP instructing him

 

 

Dear Dr XXX

Exercising right to opt out

 

As you are probably aware, the Government is intending to ask you to transfer the

electronic medical records of your patients onto a national database called the “spine”.

They intend you to do this without first seeking the consent of your patients. It is BMA

policy that patients should give their individual consent prior to their information

being transferred on to the national database.

 

There are substantial concerns about the privacy and confidentiality of information

transferred onto the national database, not least because promised software security

safeguards called “sealed envelopes” will not be in place and because the patient’s

instructions with regard to who may access the records can be overridden. I do not

believe that such a large database, with so many staff users, can be regarded as secure.

 

I would be grateful if you would ensure that none of my records held by you are

entered onto the national system. Would you please also file or scan a copy of this letter

in my records and also record my dissent by entering the “Read code” — ‘93C3. —

Refused consent for upload to national shared electronic record.’ into my computer

record. I am aware of the implications of this request and will notify you should I

change my mind.

 

This request is itself confidential. Please do not divulge my decision, in an identifiable

manner, to anyone other than to clinicians who are providing care to me and who

might otherwise place information about me on the national care records service.

Further information for GPs is available online at http://www.TheBigOptOut.org/for GPs

 

[Conniff]

I thought this was for the use by other medical institutions. I thought that if I was taken ill in some other part

of the country then they would just enter my name into the computer and my medical records would be there

for them to act on.

 

I don't remember that letter but then again, I'm old and you are young, well you look young.

[citizenB]

I thought this was for the use by other medical institutions. I thought that if I was taken ill in some other part

of the country then they would just enter my name into the computer and my medical records would be there

for them to act on.

 

 

That is what I assumed when it was first mooted, Conniff - but apparently not !!

I don't remember that letter but then again, I'm old and you are young, well you look young.

 

 

I am still not telling you where I hid the keys to the drinks cabinet

[Guest]

yes, afaik that system is already in place, ie if taken ill/emergency elsewhere then the hospital/paramedics wld be able to see certain records online. but only them.

this extra disclosure was, as you say, for others.

[Sali]

Why is it unacceptable ?

 

Personally I don't care who knows what illnesses I've had or what treatment I've had.

 

 

Medics don’t seem to read your notes before a pre-planned consultation and I can’t imagine they would even have time in a medical emergency. They will be relying on you or those with you for details.

However, it is never right to presume consent (to pass on your details to a third-party) when you hand over, probably because you have no choice, your personal details and especially those relating to your medical history. It seems to me that most organisations’ network/server security is poor and then there’s the disgruntled/avaricious employee angle. Our data is valuable and can be exploited. I do not want to be mopping up the consequences when things go awry.

Fine, if you are asked and agree on the condition that the possible benefits/consequences are explained and understood – although would A&E be the time/place?

[Madamfluff]

When Care.data was in the news I asked Dr Geraint Lewis NHS England’s Chief Data Officer a question on Twitter - the question was 'will people who don't use the NHS IE people who have private GPs and use private Hospitals have their data uploaded. He replied that no only patients who use the NHS and will have data uploaded.

 

 

What this of course means that if the data used leads to new drugs or regimes for certain conditions (which is what NHS England was telling us) but it costs say £1,000 a month, NICE may not approve it for NHS use.

 

 

So people who use the NHS and have all their data uploaded wont get the drug

People who use the NHS but may have private or employer health insurance MAY get it if their insurer agrees to pay

People who don't use the NHS and none of their data was used in the research will be able to pay privately

 

 

Is this what the NHS wanted??? poor people having all their data used so that rich people can have the benefits.

[Nystagmite]

Medics don’t seem to read your notes before a pre-planned consultation and I can’t imagine they would even have time in a medical emergency. They will be relying on you or those with you for details.

 

One of my friends found this recently. She was in hospital and had to constantly point out that as someone with a DVT, she can't have ibuprofen. Despite this, (and it was written in her notes) she was still given it.

 

I have asthma and have to keep changing medication. I always make a point of stating I have asthma before they prescribe me anything. Most of what they'd normally prescribe for my condition, I can't take.

[silverfox1961]

One of my friends found this recently. She was in hospital and had to constantly point out that as someone with a DVT, she can't have ibuprofen. Despite this, (and it was written in her notes) she was still given it.

 

I have asthma and have to keep changing medication. I always make a point of stating I have asthma before they prescribe me anything. Most of what they'd normally prescribe for my condition, I can't take.

 

Surely the staff should be aware that when a patient is admitted, they go through their medicines and make notes for any allergies to medicine, drugs they can't have and a bit of common sense by the staff.

 

Whenever I see a doctor regarding my medicines, I always see my own GP. I don't mind seeing other doctors for other issues however have a long relationship with my GP and she knows me and my medical issues intimately . My hospital notes also have all my allergies on the front page. I have never had an issue with this so there is no need to go over it again and again.

[citizenB]

Surely the staff should be aware that when a patient is admitted, they go through their medicines and make notes for any allergies to medicine, drugs they can't have and a bit of common sense by the staff.

 

Whenever I see a doctor regarding my medicines, I always see my own GP. I don't mind seeing other doctors for other issues however have a long relationship with my GP and she knows me and my medical issues intimately . My hospital notes also have all my allergies on the front page. I have never had an issue with this so there is no need to go over it again and again.

 

 

 

You would think so, wouldn't you?

 

 

Time and time again, I find that I have to explain that I am allergic, seriously allergic to penicillin - even with the red warning sticker on the front of my notes !

 

 

Chances of me seeing my own GP is on a par with me wining the lottery !

[Sali]

When Care.data was in the news I asked Dr Geraint Lewis NHS England’s Chief Data Officer a question on Twitter - the question was 'will people who don't use the NHS IE people who have private GPs and use private Hospitals have their data uploaded. He replied that no only patients who use the NHS and will have data uploaded.

 

 

What this of course means that if the data used leads to new drugs or regimes for certain conditions (which is what NHS England was telling us) but it costs say £1,000 a month, NICE may not approve it for NHS use.

 

 

So people who use the NHS and have all their data uploaded wont get the drug

People who use the NHS but may have private or employer health insurance MAY get it if their insurer agrees to pay

People who don't use the NHS and none of their data was used in the research will be able to pay privately

 

 

Is this what the NHS wanted??? poor people having all their data used so that rich people can have the benefits.

 

 

At the risk of sounding like I have a chip on my shoulder, access to the best schools, jobs and health comes down to how deep your (or your family's) pockets are. It is a fact of life that we can strive to change, but never really alter.