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

[nolegion]

So effectively there is no opt out 2?

 

There is certainly nothing in the literature or online which offers any way of preventing medical information from non-GP sources, together with details identifying the patient, from reaching the 'HSCIC'. Opt out 2 only prevents (or is at least supposed to prevent) the HSCIC from passing on the full 'identifiers' if or when it subsequently discloses the medical details to others.

 

 

Thank you annpow. Petition duly signed.

[honeybee13]

I signed the petition too. This is a shocker.

 

HB

[nolegion]

Opt out 1

 

 

This is no doubt why the department of health refused properly to answer the parliamentary question referred to earlier:-

 

http://www.computing.co.uk/ctg/news/2327824/when-is-an-opt-out-not-an-opt-out-when-its-a-caredata-opt-out

 

We are being grossly, fraudulently, misled.

[nolegion]

" NHS England has announced it will delay its flagship data-sharing scheme for six months, to allow managers more time to ‘build understanding of the benefits’. NHS bosses said they would halt the planned extraction of data from GP surgeries in April and delay it until the autumn. "

 

From:

http://www.pulsetoday.co.uk/your-practice/practice-topics/it/nhs-england-unable-to-confirm-caredata-scheme-will-go-ahead-as-planned/20005896.article

 

Good. That's a start.

[honeybee13]

Hi NL.

 

Does that mean they want more time to indoctrinate us, do you think? We're fortunate that our surgery don't seem to agree with this initiative either, so they're being very helpful.

 

HB

[nolegion]

Well, since I said a couple of weeks ago that:

 

" This project should be completely stopped in its tracks unless and until everyone is properly informed as to what is actually intended. "

 

I guess I cannot complain now that exactly that seems to have happened

.

However, I remain deeply sceptical about the project as a whole, and about whether truly accurate information will be supplied to patients in a thorough, candid and timely fashion - together with a genuine and easy 'opt-out' method.

 

Needs watching as by the proverbial hawk, and all further nuggets of info gladly received here.

 

Glad to hear your GPs are fully 'on-side', HB. We could do with more of those.

[Sali]

I was pleased to hear the news of the postponement of this project. I heard a government official (could have been the health secretary) say that it would still definitely go ahead. Who knows. They never seem averse to a u-turn or two.

 

According to a radio report thousands of people are downloading opt-out letters (http://medconfidential.org/wp-content/uploads/2014/01/caredata_opt-out_letter.pdf).

[speedfreek]

Looks like everybody in this debate is a bit to late

 

http://www.telegraph.co.uk/health/healthnews/10656893/Hospital-records-of-all-NHS-patients-sold-to-insurers.html

 

However, a report by a major UK insurance society discloses that it was able to obtain 13 years of hospital data – covering 47 million patients – in order to help companies “refine” their premiums.

 

As a result they recommended an increase in the costs of policies for thousands of customers last year. The report by the Staple Inn Actuarial Society – a major organisation for UK insurers – details how it was able to use NHS data covering all hospital in-patient stays between 1997 and 2010 to track the medical histories of patients, identified by date of birth and postcode.

 

Here is the Staple Inn Actuarial Society report used in the above http://www.sias.org.uk/view_paper?id=SIASDec2013Paper

 

[ATTACH=CONFIG]49430[/ATTACH]

[honeybee13]

That's outrageous.

 

HB

[speedfreek]

HSCIC. what you can get, in what format and the cost

 

[ATTACH=CONFIG]49431[/ATTACH]

[Conniff]

A correction is needed to the quote above.

 

Please amend the following - "in order to help companies “refine” their premiums. "

 

to read - "in order to help companies 'raise' their premiums".

[Madamfluff]

" NHS England has announced it will delay its flagship data-sharing scheme for six months, to allow managers more time to ‘build understanding of the benefits’. NHS bosses said they would halt the planned extraction of data from GP surgeries in April and delay it until the autumn. "

 

From:

http://www.pulsetoday.co.uk/your-practice/practice-topics/it/nhs-england-unable-to-confirm-caredata-scheme-will-go-ahead-as-planned/20005896.article

 

Good. That's a start.

 

Well actually no as its the second 6 month delay and they didn't learn their lesson first time round

[nolegion]

Good point. Will they learn their lessons this time, I wonder

 

This afternoon's health select committee session investigating the "care.data" project has recently finished ( 2 hrs 50 mins).

 

Here's a link, but I am not sure how long these clips stay available (and just in case anyone hasn't watched one of these online before, be warned the first 30 seconds or so is often 'silent': do not adjust your set):-

 

http://www.parliamentlive.tv/Main/Player.aspx?meetingId=14949&wfs=true

 

I think many very important questions were asked - and one or two even got answered - but I was particularly keen to try to spot what might be raised about the Telegraph article SF alerted me to (post #33 above and the actuaries' document involved).

 

It came up more than once and was still being pursued in some of the last moments of discussion - specifically 02:43:20 to 02:48:42. More like continuing evasion than transparency, I think.

[Ford]

Be aware that your gp records will soon be available to the HSCIC unless you opt out.

It was due to be rolled out in April, but has been delayed for 6 mths.

but, some hospital records already given out apparently, and to the insurance industry?

some further info

http://www.bbc.co.uk/news/health-26347026

nhs.uk/caredata

hscic.gov.uk

etc

ps, just seen a prior thread re this http://www.consumeractiongroup.co.uk/forum/showthread.php?414742-quot-Better-information-means-better-care-quot-Don-t-be-fooled.

[honeybee13]

Threads merged, Ford.

 

HB

[Ford]

Threads merged, Ford.

 

HB

 

 

has anyone done a dpa request to cease re hosp records?

[honeybee13]

Sharp-eyed cagger 2ltr16valve spotted this, quite a worrying article.

 

http://www.telegraph.co.uk/health/he...S-records.html

 

HB

[speedfreek]

Sharp-eyed cagger 2ltr16valve spotted this, quite a worrying article.

 

http://www.telegraph.co.uk/health/he...S-records.html

 

HB

It's even worse as KPMG will control the majority of GP CCG (Clinical Commissioning Groups)

 

So we have ATOS running the care database being used by ATOS (KPMG is ATOS to) for the CCG

 

http://mikesivier.wordpress.com/2013/09/23/are-these-the-men-who-would-be-king/

[nolegion]

For anyone still keeping an eye on the care.data fiasco, there was another Commons select committee inquiry about it earlier this week (08 04 14).

 

It seems to me that few decisions about any substantial changes to the proposed process have yet been made, and if they are still to go ahead next October (which was announced as planned when the fiasco came completely unstuck a few weeks ago), they will have had to do a considerable amount of further work, to avoid the same thing happening all over again.

 

A few points were clarified however. There will still be a two-item opt out, and:-

 

1. It is now apparently definite that if you notify your GPs that you elect for' opt out 1', NO confidential data from your GPs will be uploaded from your GPs' computerised records. (It appeared at one stage that this might not be the case – merely that your records would be 'pseudonymised' in the hands of the "Health and Social Care Information Centre", in a fashion that convinced absolutely nobody.)

 

2 As before, the second opt out will prevent confidential info grabbed from hospitals (which is already happening) being transferred, by the HSCIC, outside the NHS. This means that if the GP has entered the right code, your NHS number (but no other info) will be used to tell the HSCIC that you want this further option to apply.

 

There is, apparently, at least one more option for patients.

 

According the HSCIC at least, in the committee meeting, the (predominantly useless) 'NHS Constitution' (which isn't law) already allows a patient to tell hospitals that they don't want their medical records 'mined' by the HSCIC in the first place. Well, I have to say that's news to me. I have never heard of anyone being advised of this 'on site', nor of any hospital being organised to respond to such an instruction, if given.

 

I would be very interested to learn from anyone who is familiar with this particular point – or to be advised how they get on if the try it. I'm not hoping for a hospital admission any time soon, but if one arrives - and I am still conscious - I think I will give it a try, because I checked and the 'Constitution' (page 8) does indeed say;-

 

" You have the right to request that your confidential information is not used beyond your own care and treatment and to have your objections considered, and where your wishes cannot be followed, to be told the reasons including the legal basis."

 

(https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/170656/NHS_Constitution.pdf)

……………………………………………………………………………….

 

My favourite quote (from an MP interrogating the HSCIC people) was:-

 

" The big message out there is…if you want to protect yourself from a bunch of clowns, you need to opt out tomorrow. "

 

(at 00:48: 00 of:-

http://www.parliamentlive.tv/Main/Player.aspx?meetingId=15289)

[Ford]

general q - what is the policy re gp (and others eg a hosp dr's sec) 'receptionists' accessing patients records? ie what are they allowed to look at?

[worried33]

I never got the leaflet, I presume my data is now shared without my consent?

[nolegion]

No, worried33. The care.data project was stopped in its tracks last February before any 'uploading' of data from GP surgeries had started. It is not due to be tried again (if they get their act together at all, and there is little sign of that yet - and then only on a very limited regional basis) until next October. You should get another, proper, chance to object to your practice, in, maybe, several months time.

 

As regards (non-professional) staff in surgeries\ hospitals etc and medical records, the usual story is that access is only made available on a strictly controlled basis and for necessary administrative reasons e.g. scanning paper documentation into electronic records, or printing out particular reports.

 

Patients are also told that all staff are in event 'bound by strict patient confidentiality', and that fierce audit-trails would expose any unauthorised access to computerised records etc.

 

Frankly, I have little faith in much of that actually being honoured in practice.

[Ford]

....

 

Frankly, I have little faith in much of that actually being honoured in practice.

 

 

ditto. cheers for reply.

[nolegion]

" Health managers have admitted they have been unable to implement 700,000 patient opt-outs to GP data being shared, with GP leaders claiming that their admission demonstrates the ‘mess’ that the Government has created."

 

See yesterday's Pulse:-

 

http://www.pulsetoday.co.uk/your-practice/practice-topics/it/nhs-overriding-700000-patient-opt-outs-to-gp-data-being-shared/20009761.article

[think about it]

Terrifying, the very reason that even though it wasn't being rolled out here in Wales we put the posters up advising people that we could add the opt out codes now if they wished. It's certainly on all of my family's records. I've not scrolled back to see if they're already listed but I'm happy to post the codes that need to be added if you like.