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NHS England Video on Patient Data

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Mark Platt
Member
Posts: 290
NHS England Video on Patient Data
Posted on: January 27 2014, 12:22 pm

A new animated video has been developed by NHS England and the Health and Social Care Information Centre to further raise awareness of how patient data are set to be collected and used to help improve care for all.

The video, “Better Information Means Better Care”, accompanies a leaflet of the same name that is currently being delivered to every household in England. These materials are part of a wide range of awareness-raising work that NHS England and the Health and Social Care Information Centre are doing to support GPs in ensuring their patients know about how data are used and the choices available to patients.

For decades, the NHS has been using information from health records for purposes other than providing direct care, for example to support research and to help plan new health services.

The animation presents a simple way for GPs and other NHS staff to explain why we need to upgrade our systems to collect information that is missing at the moment. By incorporating this missing information, we will obtain a much more rounded picture of the quality of care across the NHS and social care.

Dr Geraint Lewis, Chief Data Officer at NHS England, said: “NHS England is supporting GP practices in making patients aware of how their information is used to help improve care for all. This month, we are sending a leaflet to every household in England to help raise awareness and to explain to patients the choices that are available to them. It is important that we communicate this message in a range of different formats, so as well as the leaflet, we are using posters in GP practices, radio and TV interviews, press articles, and this new animation.

“Taken together, I think these communications will help improve patients’ understanding of how the NHS uses their information and the fact that they have a choice.”

See: http://www.england.nhs.uk/ourwork/tsd/care-data/
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john@tcell.org.uk
Member
Posts: 136
Re: NHS England Video on Patient Data
Reply #1 on: January 27 2014, 12:39 pm

For balance, there is some concern over this.  Many people become worried about the as yet unspecified other 'partners' that can have access to this data.  If it were to stay wholly within the NHS I doubt many would take issue. Some may be interested in http://medconfidential.org/whats-the-story/ . The video concentrates on the NHS benefits but quickly mentions the other impact - the impact that should cause people to stop and think more carefully in my view.
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Mark Platt
Member
Posts: 290
Re: NHS England Video on Patient Data
Reply #2 on: January 27 2014, 02:04 pm

Hi John,

There certainly has been debate, disagreement, and discord, and my posting is neither endorsement nor condemnation; the issue was raised at Friday's CAB meeting, by NAT, who have recently produced a briefing on the new arrangements for the use of patient data held by the NHS, and the policies that surround them.

Always good to know that people are watching and reading the bulletin boards.

Mark
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john@tcell.org.uk
Member
Posts: 136
Re: NHS England Video on Patient Data
Reply #3 on: January 27 2014, 04:29 pm

Yes, always watching and have promoted the NAT briefing. Thank you for being clear that you were neither endorsing or condemning.
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Mark Platt
Member
Posts: 290
Re: NHS England Video on Patient Data
Reply #4 on: January 28 2014, 10:49 am

Here's the Hansard from 15th January's Health Questions, answered by Dan Poulter, Health Minister, on data usage under the new arrangements.

Medical Records: Databases

Mr Godsiff: To ask the Secretary of State for Health for what reason it was decided not to include an opt-out form in the Better information means better care leaflet. [182335]

Dr Poulter: When developing plans for the 'Better information means better care' leaflet, NHS England thought that it was more appropriate for general practitioners locally, as data controllers for their practice, to determine how best to manage the opt-out arrangements for their patients.

Mr Godsiff: To ask the Secretary of State for Health (1) what steps he will take to ensure that patient data made available by the care.data programme is not used for private profit; [182339]

(2) whether researchers using patient information made available under the care.data programme will be able to pay an extra charge to receive that data with patient-identifying information. [182371]

Dr Poulter: Any organisation or researchers can make an application to the Health and Social Care Information Centre for data and each application is considered individually.

An organisation or researcher making an application would only be allowed access to confidential information if they had a legal basis to do so including:

where they had already obtained explicit patient consent; or

had been granted legal approval under Regulation 5 of the Health Service (Control of Patient Information) Regulations 2002 (commonly known as ‘section 251 support’);

or

legally required to do so, for example, in a public health emergency such as an epidemic.

While the Health and Social Care Information Centre charges a fee to cover its costs, it does not make profits from providing data to other organisations, nor does it subsidise any applicants to receive it.

Mr Godsiff: To ask the Secretary of State for Health what his Department's policy is on providing compensation to people whose medical confidentiality has been breached by (a) the care.data programme and (b) his Department's other programmes. [182340]

Dr Poulter: The Health and Social Care Information Centre (HSCIC) has been established to be the secure environment in which personal confidential data is held and analysed. The HSCIC is legally bound to maintain confidentially and to ensure confidential information is held securely. This would include data collected as part of the care.data programme or other programmes managed by the HSCIC on behalf of the Department.

Breach of confidentiality by the HSCIC would attract a fine of up to £500,000 from the Data Protection regulator, the Information Commissioner and leave it open for an individual to seek redress through the civil courts.

15 Jan 2014 : Column 591W

Mr Godsiff: To ask the Secretary of State for Health what the total estimated cost is of (a) the IT systems for the care.data programme and (b) the public awareness campaign for care.data. [182341]

Dr Poulter: NHS England and the Health and Social Care Information Centre are currently in the process of scoping the care.data programme and associated funding requirements.

The cost of the NHS England leaflet drop to households in England is approximately £1.2 million.

Mr Godsiff: To ask the Secretary of State for Health what estimate he has made of the number of hours of GPs' time that will be spent talking to patients about care.data in 2014; what the total cost of such time will be; and what potential effect such time spent will have on patient waiting time. [182351]

Dr Poulter: General practitioners (GPs), as data controllers, have legal responsibilities under the Data Protection Act (DPA) 1998 for ensuring that patients are aware of how their information is used and shared. This is not a new requirement and does not just relate to care.data. The leaflet is not just about care.data but all uses of data for wider purposes. Making sure patients understand about how their information is used and the benefits it can bring is something we should all support.

The Information Commissioners view is that cost of compliance is an Information Governance overhead for a GP practice, in the same way that paying an accountant is a tax/finance overhead. We are supporting GP practices in a number of ways for example, there is a patient information line which patients can call if they have questions, which will ease the burden on GP practices.
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john@tcell.org.uk
Member
Posts: 136
Re: NHS England Video on Patient Data
Reply #5 on: January 29 2014, 06:32 pm

FYI Patients may lose trust in NHS if care.data scheme goes ahead, admits NHS England risk analysis http://www.pulsetoday.co.uk/your-practice/practice-topics/it/patients-may-lose-trust-in-nhs-if-caredata-scheme-goes-ahead-admits-nhs-england-risk-analysis/20005675.article#.UulIbnkfDbk
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Zhana Books
Member
Posts: 63
Re: NHS England Video on Patient Data
Reply #6 on: February 3 2014, 05:57 pm

Thanks for this info, John. I found this particularly useful:  How to Opt Out and the opt-out form.  http://medconfidential.org/how-to-opt-out/

It can be emailed or printed out for distribution to whomever needs it. 
Here's my question:  do service users need to present a copy of the opt-out form to clinicians and healthcare providers including hospitals, clinics, etc.? 
Zhana
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Mark Platt
Member
Posts: 290
Re: NHS England Video on Patient Data
Reply #7 on: February 3 2014, 06:10 pm

Hi Zhana,

In case John doesn't see this for a while, this issue is GP focused, so anyone opting out has to take the forms or letters to their GPs, as that is the data that is being picked up by this new service.

Patient data from HIV clinics is handled completely separately, and reported through a system called SOPHID, (see: http://www.hpa.org.uk/webc/HPAwebFile/HPAweb_C/1317139918001), which is in the process of being replaced by another system HARS (see: http://www.hpa.org.uk/Topics/InfectiousDiseases/InfectionsAZ/HIV/HIVAndAIDSReportingSystem/).

In both cases data is completely annoymised, and there is no opportunity for any patient to opt-out of their data being used. However, it is not used by third-party organisations, only NHS organisations that are involved in the monitoring or funding of HIV services and care in England.

Mark
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john@tcell.org.uk
Member
Posts: 136
Re: NHS England Video on Patient Data
Reply #8 on: February 3 2014, 06:42 pm

Timely post Zhana. 

I have opted not to share my information.  I approached my GP months ago about this and asking for information and explanation.  In fairness he was great but told me the Practice Manager would call me.  Alas it never happened. That was until today and a call with the new Practice Manager, following a further prompt to the GP.

My impression is that there is equal confusion about this amongst surgery administration staff.  Though I used the resources previously quoted. She talked about information that went out form the GP surgery and information that could be shared from a third party if the GP referred me to another medical specialty.  My letter was very clear but its worth checking with your GP, if you opt out, that is is actually done. And completely if you choose to.

Mark is correct about SOPHID that has been around for ages and its replacement.  That is separate from this care data issue.

On your question.  If you have a regular set of clinicians you see and you are concerned about how your information maybe distributed then its worth mentioning it when you see it.  If you don't want information to be shared or sent to a third party then its worth setting out your consent parameters in writing.   HIV is a "notifiable disease" http://www.patient.co.uk/doctor/Notifiable-Diseases.

Sharing data can be a sensitive issue. I am not advocating anything other then people make an informed choice.  It will be different depending on experience.  You can find more information on gmc-uk.org and bma.org.uk relating to patient confidentiality.
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Roy Trevelion
BHIVA Reps
Posts: 332
Re: NHS England Video on Patient Data
Reply #9 on: February 5 2014, 06:51 am

Many thanks Zhana, John and Mark.

This is Healthwatch England's view (yesterday):
http://www.bbc.co.uk/news/uk-england-devon-26030479

All the best, Roy
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Zhana Books
Member
Posts: 63
Re: NHS England Video on Patient Data
Reply #10 on: February 5 2014, 09:19 am

Thanks, Roy, and thanks to everyone who has contributed to this thread. 
I still have some serious concerns.  For example, what if someone were to go to a healthcare provider and disclose that he/she was HIV+?  What would happen to that information?  It seems very unclear to me.  It does not appear that real safeguards are in place. 
Regards,
Zhana

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Roy Trevelion
BHIVA Reps
Posts: 332
Re: NHS England Video on Patient Data
Reply #11 on: February 5 2014, 04:31 pm

Thanks Zhana,

Here's an email from a friend of mine. She works with her local Healthwatch. I've edited out her personal bits. In the following email DPA stands for the Data Protection Act:

Quote
A reminder why we are in this mess...

"The Health and Social Care Act 2012 empowers the HSCIC to require providers to send it personal confidential data when it is directed to do so. The Act also overrides the requirement under the common law duty of confidentiality to seek patient consent. This was because parliament recognised the importance of linking data to deliver high quality health and care services, for the benefit of all. The Secretary of State has, however, allowed patients to object and have this objection respected." From GP technical guide

As I understand it there are two levels of possible opt-out (referred to as 'dissent') from your Personal Confidential Data (PCD) being used by care.data.

Neither will stop your data being taken out of the GP systems to HSCIC (which will happen each month) in anonymised form .

34. Why can’t patients object to anonymised data flows? [From: Frequently Asked Questions: care.data guide for GP Practices - see attachment]:
"Data which are anonymised are not considered to be personal data for the terms of the DPA. Such data are not subject to a duty of confidentiality because they do not allow the individual to be identified."

From GP technical guides:
If both dissent codes are applied the HSIC will take your clinical record (currently just the bit that is coded, not any free-text and initially only information entered from your record recently) but in an anonymous form only, not containing PCD. If this is what you want you need to have both of the codes below (9Nu0 and 9 Nu4 see below) applied to your record by your GP. This will stop any linkage being made between your GP record and data from any other NHS sectors eg Hospital records. It is this linkage, with the much fuller picture of NHS use which is seen as the rationale for care.data.

If you are OK for the HSIC to have your PCD (so they can link it with your hospital records) but not for this data to be used outside the HSIC then you only need the second code below, 9Nu4. This means your GP record data can then be used for the production of on-going HSIC reporting in aggregated form only. Obviously this will provide a better data set for HSIC to use by 'joining up' the data from your use of NHS services in GP and in Hospital settings by creating a pseudonymous record. The promise is that then your data would not be available legally in any identifiable form outside the HSIC.

If you are content for your PCD to be used outside the HSIC - with use regulated by HSIC governance programme and NHS England's assurances that permission for use  would be strictly (and transparently?) administered in the interest of service planning and research then you do not need to take any action.


From the GP technical guide
http://www.england.nhs.uk/wp-content/uploads/2013/08/cd-guide.pdf

Where a patient objects, GPs should use the following codes to record the objection:

Prevent PCD leaving the GP practice – where a patient objects to PCD leaving the GP practice use the ’Dissent from secondary use of GP patient identifiable data’ code (Read v2: 9Nu0 or CTV3: XaZ89 or SNOMED CT 827241000000103).

Prevent PCD leaving the HSCIC – where a patient wishes to prevent PCD gathered from any health and social care setting from leaving the HSCIC use the ‘Dissent from disclosure of personal confidential data by Health and Social Care Information Centre’ code (Read v2: 9Nu4 or CTV3: XaaVL or SNOMED CT 8815610 00000100).

With thanks to all who joined in this thread.

Roy
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john@tcell.org.uk
Member
Posts: 136
Re: NHS England Video on Patient Data
Reply #12 on: February 6 2014, 10:43 am

Thanks for that Roy. There are some interesting articles on Pulse Weekly http://www.pulsetoday.co.uk about this. Pulse is a GP focused site, you may need to join to get access to articles though.
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Mark Platt
Member
Posts: 290
Re: NHS England Video on Patient Data
Reply #13 on: February 6 2014, 06:35 pm

Just in case you can't access it (I can, but it may be an RCN subscription), below and attached is the most recent article...

It's worth noting that I received a really hysterical email from 'SumofUs' this afternoon, which is campaigning to have people write to the SoS; I have no problem with the objective, but the way the email was written, and some of its content, were well over the top. Needless to say, HIV diagnosis disclosure was given as a reason that people should be writing to Jeremy.

Anyway...
 
GP hit with contract notice over plan to opt all patients out of care.data
4 February 2014 | By Alex Matthews-King
Exclusive A GP faces possible termination of his contract over his plan to opt all his patients out of NHS England’s flagship data-sharing scheme, Pulse can reveal.
Managers from Thames Valley area team have sent Oxford GP Dr Gordon Gancz a ‘notice of remediation’ to force him to remove any opt-out codes for care.data he had added without explicit patient consent, saying that he was in breach of his contract.

The notice - sent last week - also says that he must ‘remedy this breach’ by removing notices on his practice website about his plan to opt all his patients out of the scheme.

Managers said that his actions were in breach of NHS England’s requirement that ‘patients will automatically be included unless they indicate to their practice that they wish to opt out’.

Dr Gancz now faces either taking the action specified in the letter, or potentially having his contract terminated.
The move comes as privacy campaigners write to every practice in the country urging them to follow Dr Gancz’s lead and opt all their patients out of the care.data scheme. But the letter from managers to Dr Gancz shows that practices may face contractual action from NHS England if they do this, as warned by the GPC last year
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john@tcell.org.uk
Member
Posts: 136
Re: NHS England Video on Patient Data
Reply #14 on: February 6 2014, 08:14 pm

Mark, I think one of the issues I have is that once such data has been accumulated. Future governments can change and alter the access.  They may not even require a new statue to do it. They could use a Statutory Instrument or any other parliamentary protocol.  Once you have given consent you cannot undo it.  I understand that data may still be collected but in a wholly anonymised form.  This seems to be more acceptable to a greater cohort of those currently opposed.

Your medical data, to my understanding, won't restrict any non-disclosure of HIV. That may well be an issue for many.  I am open about my status. My issues are IT security, general data privacy issues and a cynicism that the law is often used for a purpose not originally intended for.

The interesting thing about the GP below is that the instructions from NHS England seem to be at variance with GMC/BMA advice on confidentiality.
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Mark Platt
Member
Posts: 290
Re: NHS England Video on Patient Data
Reply #15 on: February 12 2014, 11:01 am

More commentary, from the excellent health policy blogger (St) Roy Liley, on care.data

To read it on line (and with the links), see here: http://campaign.r20.constantcontact.com/render?llr=zfxea5cab&v=001-Z4x8hfwYW_PtYXl5sWhqwCaJKpxfm3GRfsViZBKTC2wPXjxyJGHi84up2if38Z7cEjoEaGJlD9CbAupuo8PVT8r00Us_AfsRmV2uaB5oxsmYA-rox0_1A%3D%3D

Here's a question for you.  I doubt it will win a pub quiz but it might get someone to admire your in-depth knowledge of the NHS enough to buy the Costa's. What have the numbers 251 and 4 got in common?
 
Well, if you multiply 251 by 4 you get 1004, which, as you will know is the NCBI ID for the CD6 gene which encodes a member of the cadherin superfamily and may play a role in kidney function. Everyone knows that... so that is not the answer. 
 
If you divide 251 by 4 you get 62.75, which is usually, roughly the value of the Rupee against the US$.  Again, I expect you to know that... so think again.
 
I'll make it easy; 251 is the section of the Health and Social Care Act that allows LaLite to make regulations to set aside the common law duty of confidentiality.  In other words it is what the row over care.data is all about.  Don't groan.... read on.  It's important and there is a flat-white at stake.
 
The Regulations that enable this power are called the Health Service (Control of Patient Information) Regulations 2002.  More precisely:
 
Sec 251 came about because it was recognised that there were 'essential activities' of the NHS, and important medical research, that required the use of identifiable patient information but, because patient consent had not been obtained to use people's personal and confidential information for these other purposes, there was no secure basis in law for these uses.
 
Sec 251 was established to enable the common law duty of confidentiality to be overridden to enable disclosure of confidential patient information for medical purposes, where it was not possible to use anonymised information and where seeking consent was not practical, having regard to the cost and technology available.
 
So, who makes the decision to 'over-ride the common law duty of confidentiality'?  There are 16 of the great and good and you can find them here.  If you want to join their happy band, ring this number; 020 7972 2557 and tell 'em I recommended you.
 
What about the number 4?  They are the four Musketeers.  The NHS version; the four The Daagers (The Data Access Advisory Group).  They are: Mark Davies (Chair), Health and Social Care Information Centre Caldicott Guardian;  HSCIC Medical Director & GP; Clare Sanderson, Director - Solution Design, Standards & Assurance; Sean Kirwan: DH Policy Unit; and Patrick Coyle: independent representative.
 
The Daagers are unelected and I have no idea how they got to be appointed?  They meet every month and it is their job to review applications for HES data from the Data Linkage and Extract Service.  In other words if a company or researchers want data that might include your stuff, Mark, Clare, Sean and Patrick flip the executive coin and make a decision.  Well, maybe not flip a coin but somehow or other decide.  If you'd like to buy some data you can contact them at enquiries@hscic.gov.uk
 
Their terms of reference are here.  I was interested to see page 4; if one of the Daagers can't make a meeting they may send a nominated "Reserve"... presumably they can send a mate, Mum or minder?  Here's some of what they've approved so far.  I wonder what Corin Ltd wanted to know about you?  The Daagers publish minutes and here are the latest I can find.
 
I'm sure the Daagers and the others are lovely people but this whole process has a Dad's Army feel to it.  Like the District Health Authorities of the 1970's or the Pigeon Fanciers and Loft Makers Society of the 60's.
 
Right now they are only dealing with HES data; they are soon to take on your records, as the GPs will be obliged to send them in.  I would guess enquiries for data will increase 200 fold, or more.  There will be changes to the system but somehow I feel care.data is a world-class idea that's become a second-class parcel being passed between the DH and the Carbuncle.
 
care.data; better data undoubtedly means better care.  No argument.  However, the whole assembly and implementation doesn't feel 'right'; it feels cobbled together, rushed, ace-about-face; it has caused a quite unnecessary row, there are conflicting stories about essentials (like are insurance companies entitled to buy data?  Answer, it seems to me; yes, if they can convince the Daagers), the GPs are not universally on board and the opt-out arrangements are designed to put people's backs up.
 
Data?  Well, now you can put the numbers together; mine's a skinny Latté. 
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Mark Platt
Member
Posts: 290
Re: NHS England Video on Patient Data
Reply #16 on: February 12 2014, 11:31 am

And here is the link to the NHS England Privacy Impact assessment for Care.Data.

http://www.england.nhs.uk/wp-content/uploads/2014/01/pia-care-data.pdf
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Mark Platt
Member
Posts: 290
Re: NHS England Video on Patient Data
Reply #17 on: February 17 2014, 12:31 pm

An excellent piece by John Appleby of the King's Fund, on the pros and cons of the NHS Care.Data project...

Care.data – your bits in their hands - 13th February 2014, by John Appleby

Over the past few months there has been considerable debate and argument about plans by the NHS to collect and centrally collate details of individual patient records from general practice for the first time. Many have expressed worries about the care.data initiative and how potentially sensitive patient information will be used, who will have access to it (and for what reasons), and not least its security. Such fears are perhaps not just hypothetical given past examples of lost patient notes and what appear to be the misuse of sensitive patient information (even for the best of intentions).

Continues... http://www.kingsfund.org.uk/publications/articles/caredata-%E2%80%93-your-bits-their-hands
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john@tcell.org.uk
Member
Posts: 136
Re: NHS England Video on Patient Data
Reply #18 on: February 17 2014, 02:18 pm

Opposition to care.data grows as NHS suffers two million "serious data breaches" since 2011 http://www.computing.co.uk/ctg/news/2329272/opposition-to-caredata-grows-as-nhs-suffers-two-million-serious-data-breaches-since-2011

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Mark Platt
Member
Posts: 290
Re: NHS England Video on Patient Data
Reply #19 on: February 17 2014, 02:31 pm

Ah, the tyranny of numbers.

To put that number into some perspective, the NHS deals with over 1 million patients every 36 hours, most of which interactions will involve data capture and transference.

Truth be told, we have little idea of how many data breaches there were before these systems came into mass use. It's the very fact of being able to track and record that makes it possible to see when such errors occur. That said, when it's one's own data that's lost, misplaced or sent to the wrong destination, it is awful. My paper dental records, with my HIV diagnosis, went missing twice. And because they were paper, no-one was able to tell me where they were, or were likely to be.
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john@tcell.org.uk
Member
Posts: 136
Re: NHS England Video on Patient Data
Reply #20 on: February 17 2014, 02:47 pm

I have had a data loss concerning medical information from secondary care and it was electronic.  That's why I am sceptical. You make the most important point. The numbers become important if such data loss happens to you. I think it is a shame because, that said. Like most I would be happy for care.data to be used exclusively within the NHS.  Its the "third party" part that I believe most have an issue with.
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Mark Platt
Member
Posts: 290
Re: NHS England Video on Patient Data
Reply #21 on: February 18 2014, 12:55 pm

Its looks like our heated debates here have been picked up by the Meja  Wink

Patient records database ‘should be delayed’
NHS officials are holding crisis talks over the introduction of the patients' records database amid criticism that the Government is failing to properly inform the public about the plans. The British Medical Association called for the scheme to be halted until better efforts have been made to explain the plans.

The Daily Telegraph - http://www.telegraph.co.uk/health/healthnews/10644864/NHS-crisis-talks-over-introduction-of-patients-records-database.html
The Daily Mail - http://www.dailymail.co.uk/news/article-2561662/Now-doctors-union-grave-doubts-plan-harvest-patient-data-British-Medical-Association-warns-public-left-dark-scheme.html?ITO=1490&ns_mchannel=rss&ns_campaign=1490
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john@tcell.org.uk
Member
Posts: 136
Re: NHS England Video on Patient Data
Reply #22 on: February 18 2014, 01:20 pm

I don't think its heated but civil Mark.  Grin  Of interest it that, and it is key, that GP's are concerned about the breakdown in trust between them and there patients. 
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Mark Platt
Member
Posts: 290
Re: NHS England Video on Patient Data
Reply #23 on: February 19 2014, 10:28 am

Here's the official message from Tim Kelsey on the pause...

NHS ENGLAND ACTS IN RESPONSE TO CONCERNS ABOUT INFORMATION SHARING – STATEMENT FROM TIM KELSEY, NATIONAL DIRECTOR FOR PATIENTS AND INFORMATION
 
In recent weeks, we have heard from patients, many GPs, their professional organisations and, groups like Healthwatch. They have told us very clearly that patients need more time to learn about information sharing, the benefits and their right to object.

They have also told us that they understand why sharing of information is really important to help improve our understanding of what works best for patients and what doesn't work so well. We thank them for their comments and support.

The care.data programme will benefit patients by:
•      ensuring the highest standards of care and clinical safety are consistently met throughout the NHS and alert us to where standards drop, allowing us to take prompt action;
•      helping us understand what happens to people, especially those with long term conditions, who are cared for away from hospital, and to ensure their needs are met;
•      providing us with the vital information needed to assist and support research into new medicines, and the better treatment of disease.

To ensure that the concerns of the BMA, RCGP, Healthwatch and other groups are met, NHS England will:
•      Begin collecting data from GP surgeries in the Autumn, instead of April, to allow more time to build understanding of the benefits of using the information, what safeguards are in place, and how people can opt out if they choose to;
•      Work with patients and professional groups – including the BMA, RCGP and Healthwatch – to develop additional practical steps to promote awareness with patients and the public, and ensure information is accessible and reaches all sections of the community, including people with disabilities;
•      Look into further measures that could be taken to build public confidence, in particular steps relating to scrutiny of ways in which the information will be used to benefit NHS patients;
•      In the meantime we will work with a small number of GP practices to test the quality of the data. This will be voluntary.
 
Tim Kelsey, national director for patients and information at NHS England, said:
"NHS England exists for patients and we are determined to listen to what they tell us.  We have been told very clearly that patients need more time to learn about the benefits of sharing information and their right to object to their information being shared. That is why we are extending the public awareness campaign by an extra six months.”
 
Anna Bradley, Chair of Healthwatch England, said:
“This is a really positive move by NHS England. They have shown a willingness to listen to what the public have to say about the way their health and care services are run.

“Crucially they have agreed to Healthwatch England’s request to see the roll-out of care.data delayed to allow more time to ensure the public are fully informed. Over the coming months the Healthwatch network will continue to play a key role listening to the concerns of local communities, helping to inform them about what’s happening and working with NHS England to improve their communications with the public so each of us can make an informed decision.”
Professor Nigel Mathers, Honorary Secretary of the RCGP, said: "We would like to thank NHS England for listening to the concerns of RCGP members and for acting so quickly to announce this pause. The extra time will provide it with the chance to redouble its efforts to inform every patient of their right to opt out, every GP of how the programme will work, and the nation of what robust safeguards will be in place to protect the security of people's data.”

ENDS   
Notes to Editors: 
The NHS has some of the best data systems in the world. Since the 1980s, we have been collecting information about every hospital admission, nationwide. This information is used by the NHS to:
•         Check the safety of care;
•         Design new services;
•         Evaluate treatments;
•         Plan new preventive care programmes;
•         Support research into new treatments.
In 2003, we added nationwide information about outpatient appointments; in 2008, information about A&E visits; and in 2013, we added information about mental health care.
However, we are still missing information about most of the care provided outside hospital including GP, out-of-hours, and district nursing services.
As a result, we know little about the safety of care outside hospital and about how well all the different parts of the NHS are working together to provide high quality, joined-up care for patients. The purpose of the care.data programme is to bring together this missing information for the benefit of us all.
The NHS believes that patient confidentiality is extremely important and we will always comply with all our legal duties to protect patient information. Patients can choose not to take part simply by informing their GP practice. Patients can change their mind whenever they like and as often as they like.
Our aim is to ensure that the best possible evidence is available to improve the safety and quality of care for all
The Health and Social Care Information Centre is legally prohibited from making a profit from providing data and it would be unlawful to make confidential data available for the purposes of selling or administering any kind of insurance, or for marketing purposes. There is no change to how the police can request access health records.
•   NHS England is the body, established in April 2013, which leads the NHS in England. It allocates funding to England’s 211 GP-led Clinical Commissioning Groups, and directly commissions primary care, specialised services and healthcare services for offenders. Its main aim is to improve the health outcomes for people in England, and it will set the overall direction and priorities for the NHS as a whole.
•   Healthwatch England is the independent consumer champion for health and social care in England. The organisation has independent statutory powers, as stated in the Health and Social Care Act 2012, to ensure the consumers’ voice is heard and best practice is delivered in health and social care nationally. Healthwatch is also focused on providing leadership, guidance and support to the development of the network of 148 local Healthwatch that launched in April 2013. To find out more please go to www.healthwatch.co.uk 
•   For further information, please email the NHS England media team at nhsengland.media@nhs.net or call 0113 825 0958 / 0113 825 0958. For urgent out of hours media enquiries, please call 07768 901293.
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john@tcell.org.uk
Member
Posts: 136
Re: NHS England Video on Patient Data
Reply #24 on: February 19 2014, 11:24 am

This is very welcome news. However, the "official message" still doesn't "get it".  It talks about the NHS use of NHS data which I believe many dissenters would find it difficult to disagree with.  The major problem remains data given to third parties. Its not mentioned until the "notes for editors".  They really need a focus on this issue.
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Mark Platt
Member
Posts: 290
Re: NHS England Video on Patient Data
Reply #25 on: February 24 2014, 12:33 pm

Here's some more comment and analysis on Care Data.Net. It's from Prof Jarman, who's work on hospital mortality statistics played a part in the analysis of the problems at mid-staffs.

Mark 
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Mark Platt
Member
Posts: 290
Re: NHS England Video on Patient Data
Reply #26 on: February 25 2014, 10:52 am

And here's an interesting blog about the use of NHS held data...

Is NHS Health Data available to actuaries now? Yes

Yesterday the Telegraph ran a story about HES (Hospital Episode Statistics) being linked via postcodes to, for example ACORN profiles, by the predecessor of HSCIC, The dataset was then given to a society of actuaries looking at when people developed critical illnesses. People were very shocked.

See: http://storify.com/amcunningham/is-nhs-health-data-available-to-actuaries-now-yes
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john@tcell.org.uk
Member
Posts: 136
Re: NHS England Video on Patient Data
Reply #27 on: February 25 2014, 12:23 pm

"The details were then reportedly combined with information from credit ratings agencies and used to advise insurance companies, resulting in increased premiums for most customers below the age of 50." from the coverage you mention below on the Guardian http://www.theguardian.com/society/2014/feb/24/hospital-records-nhs-patients-insurance

Also of note are the activities of Phamaceutical companies http://www.theguardian.com/society/2014/feb/24/drug-makers-patient-records-database

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Mark Platt
Member
Posts: 290
Re: NHS England Video on Patient Data
Reply #28 on: February 25 2014, 04:55 pm

Labour have just issued a press release, offering to work with the Govt if it accepts a number of new requirements for the scheme:

• Andy Burnham calls for series of tough new safeguards in exchange for Opposition support
• Tells Commons: “scheme is too important to be yet another victim of clownish Coalition incompetence”
• FOI reveals Health Secretary may have misled the Commons in claiming the leaflet had gone to ‘every house in the country’
• Labour today offered to help rebuild public trust in the failing care.data scheme in return for a serious of tough new patient and public safeguards.

Andy Burnham MP, Labour’s Shadow Health Secretary, called on Ministers to use the Care Bill – due in the Commons next month – to introduce new protections, including:

• Tougher penalties for any misuse of data
• Secretary of State sign off on any application to access data and full transparency of all organisations granted access
• New opt-out arrangements by phone or online.

He offered urgent talks with the Secretary of State to see if a way ahead could be found. If Ministers refuse to agree, Labour will seek to bring its own amendments to the Care Bill and force a Commons vote on them.
Andy Burnham attacked Jeremy Hunt’s mismanagement of the NHS data-sharing scheme. He asked when Hunt was first warned about the problems with his scheme and what action Ministers had taken.
Labour believes the Secretary of State may have misled the Commons. During Health Questions, Hunt claimed “we have sent a leaflet to every house in the country.”

However, a Freedom of Information response from NHS England reveals that the unaddressed leaflet was not considered ‘exceptional’ post – common for nationwide Government communications – and therefore did not reach houses that ask Royal Mail not to deliver junk post.
Many people still report never having received the leaflet.

Andy Burnham said:

“When he was appointed, the Health Secretary declared it his personal mission to have a “data revolution” in the NHS. What he has presided over is a spectacular collapse in public confidence in the use of that data. The only revolution he’s created is the growing public revolt against his care.data scheme. And coming after his NHS 111 shambles, his court humiliation over Lewisham, it cements a growing reputation for incompetence.

“The Health Secretary has presided over a spectacular collapse in public confidence in the use of that data. Even by this Government’s standards, this is a masterclass in incompetence. First, their useless glossy leaflet didn’t even go to every home as Ministers explicitly promised. Second, when people can’t even get through to their GP practice on the phone, let alone get an appointment, they have made it almost impossible for them to opt out.

“We don’t want to see this scheme wrecked by Government incompetence – it is too important for that. This is a genuine offer to put the scheme back on track. We hope that Ministers’ pride won’t stop them from doing the right thing. If they work with us to introduce a series of tough new safeguards, some of which can be introduced to the Care Bill, we will help rescue this failing plan.”

Ends
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john@tcell.org.uk
Member
Posts: 136
Re: NHS England Video on Patient Data
Reply #29 on: February 25 2014, 07:05 pm

Did watch "Health Questions" and it seemed from Jeremy Hunts responses that he wasn't being helpful to Andy Burnham.
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Mark Platt
Member
Posts: 290
Re: NHS England Video on Patient Data
Reply #30 on: February 26 2014, 11:08 am

Here's the Gruniad's take on things...

Sharing health data is immensely important, Jeremy Hunt reminded MPs. It was by studying lots of people's medical records that doctors learned thalidomide was harmful, that MMR was proved to have no link to autism, that we discovered smoking caused cancer. And that was why the government had rummaged down the back of the sofa, found the remote control, and pressed pause on its plan to gather the nation's GP records.

It had been "absolutely right" for the organisers of the new Care.data scheme to pause its rollout, the health secretary told the Commons. This would allow them to put the kettle on, nip to the loo and win round the public to the prospect of their intimate medical information being uploaded to a central database to be shared with outside bodies managed by people who seemed not fully clear what they were up to.

They like to take little comfort breaks at the Department of Health. You will recall that, in 2011, following intense opposition from health professionals, this government's health bill was also paused to allow a "listening exercise" that led to the re-drafting of the bill. (Those who listened especially closely might even have heard the subsequent tap on the shoulder of Hunt's predecessor Andrew Lansley, and Cameron's whispered "You're fired".)

Labour leapt at the first mention of "the pause". "When we had a pause before, the result was a very good Health and Social Care Act!" countered Hunt. Shadow health secretary Andy Burnham set his face to "scoff". When Hunt was appointed, he had declared it his mission to have a data revolution but "the only revolution he has created," said Burnham, "is a growing public revolt" against the Care.data scheme.

This clearly couldn't stand. The opposition weren't the only ones who could fling slightly lame, pre-rehearsed insults across the dispatch box. "The shadow secretary of state searches for NHS crises with about as much success as George Bush searching for weapons of mass destruction!" said Hunt, rather proud of that one. Burnham flapped a copy of the "useless glossy leaflet" that advised people on their right to opt out, the one the government said had been received by every household but demonstrably had not.

Hunt flapped back: it was a bit rich for Labour to complain about the method for opting out when the previous government hadn't offered an opt-out option at all. Happily, several hours later the opposing sides found common ground, when MPs on the cross-party health select committee united to deliver a spirited kicking to the Department of Health, NHS England and the Health and Social Care Information Centre, the bodies overseeing the Care.data rollout. Why had the process been started without any code of practice in place, asked Conservative Charlotte Leslie. "It seems like you have got a half-built machine." Labour's Rosie Cooper said she had opted out of the scheme "Why? Because I don't trust you and I don't consider myself a commodity to be bartered around by you." Never mind pressing pause, sounds like someone needs a screwdriver and basic operating instructions.

http://www.theguardian.com/politics/2014/feb/25/remote-control-pause-care-data-project
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john@tcell.org.uk
Member
Posts: 136
Re: NHS England Video on Patient Data
Reply #31 on: February 27 2014, 03:48 pm

You can watch the Health Select Committee evidence session on care.data held 25/02/2014 here - http://www.parliamentlive.tv/Main/Player.aspx?meetingId=14949
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Philip Glanville
Member
Posts: 1
Re: NHS England Video on Patient Data
Reply #32 on: February 27 2014, 05:13 pm

-----------------------------------------------
I just wanted to partially re-post about our (NAT) report, 'HIV Patient Information and NHS Confidentiality in England' which was published in January and quoted earlier in this message thread.

As an UPDATE to what is reproduced below, NAT is now working on a guide for people living with HIV around these issues, and in response to concerns and speculation in the press, we have also recently written to the HSCIC (http://www.hscic.gov.uk/) to reassure NAT that NHS information will not be released to the police without a court order.


PREVIOUS UPDATE:

The report looks at confidentiality policy and processes in some detail.  It also includes the results of a survey of 245 people living with HIV on the topic, and outcomes from two invaluable consultation meetings held in partnership with Positively UK and George House Trust.  The text of the report can be found here:

http://www.nat.org.uk/media/Files/Publications/Jan-2014-HIV-Patient-Confidentiality-NHS.pdf

There is also a press release focusing on the survey results available on our homepage.

The report does look at the issue of 'secondary uses' of our personal confidential information e.g for research purposes.  Our view is that in fact the confidentiality processes are very strong in terms of preventing personal identification. 

At present the potential for research around NHS performance and outcomes for people with HIV is in any event limited because HIV clinics do not consistently use the NHS number for their patients.  We recommend that going forward the NHS number is consistently used (but with an individual patient able to opt out should they really wish to).  Similarly, in relation to the use of data for research, we argue that the current policy of allowing people to opt out should be enshrined in law.  On this latter point see Yusef Azad's letter in The Guardian (you need to scroll down!):

http://www.theguardian.com/society/2014/jan/22/debate-sale-patient-information

The opt-out provision is important - we may be content with current research use of our data but we don't know what will be proposed in the future.  And in any event the individual should have the right to do so.  But there are many things we cannot know, or only find out with great difficulty, because of the lack of HIV data available to researchers.  This might include outcomes from medicines, co-infection with other conditions such as TB or Hepatitis C, psychiatric morbidity, hospitalisation rates, the effectiveness of care pathways etc. 

We need to be vigilant and keep this under review.  But as we say at the end of the report, 'It is time that people with HIV access the full range of benefits from NHS care - the use of the NHS number on an opt-out basis in the HIV clinics will be an important step in this process'.
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john@tcell.org.uk
Member
Posts: 136
Re: NHS England Video on Patient Data
Reply #33 on: February 27 2014, 07:40 pm

Many MP's during the session quoted below, were concerned at Police access and also other governmental access to this NHS Care.data system i.e. DWP.  One MP was quite blunt about the lack of trust she had in the HSCIC.  There is also a backbench MP pushing a private members bill on "patient rights" that would legally place ownership of patient records with the patient that may well help this whole "mess". Indeed there has been a debate today in Westminster Hall - http://www.parliament.uk/business/publications/hansard/commons/todays-commons-debates/read/unknown/1036/.

That ATOS will be used to extract the data will be sufficient, of itself, to have people running to opt-out.

Of course the issue of the lax controls on data already disclosed to an Insurance Company doesn't inspire confidence - http://www.bbc.co.uk/news/health-26347026.

I hope NAT will await the outcome of the investigation of the Health Select Committee and advise accordingly.

There is a consensus that for research and use within the NHS very few object to data sharing.

As for the use of the NHS number on HIV patient records.  Though I personally have no issue, namely as it was already being done seemingly from the correspondence I have from my clinic. I have never been asked to approve or disapprove of it.
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Zhana Books
Member
Posts: 63
Re: NHS England Video on Patient Data
Reply #34 on: March 4 2014, 08:52 am

This is increasingly concerning to me, especially when reading about the breaches that have already occurred. 

The NHS is not just one amorphous blob.  As it is a huge organisation, data stored electronically is subject to both human and computer error, regardless of how well-meaning the people involved may be.  This is before we even start talking about the sharing of information with other organisations outside the NHS. 

I recently saw a presentation about the consequences of people withholding vital information in Nigeria, such as their sexual orientation and HIV status, which means HIV potentially goes untreated.  If people continue to lose faith in the NHS and its ability (or willingness) to maintain confidentiality, this could increasingly become a problem here, too. 
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