Goodness only knows how NHS England’s new junk mail leaflet, Better information means better care (2MB PDF) got its plain English Crystal Mark. It is one of the most disingenuous pieces of literature in the history of the NHS, full of ambiguity and misdirection – surpassed only perhaps its predecessor leaflet, How information about you helps us to provide better care (343KB PDF).

What these leaflets are talking about is care.data, a new scheme that will extract confidential medical information from the GP-held records of every man woman and child in England.

If you want to know more about care.data right now, you can read Hampshire GP, Dr Neil Bhatia’s comprehensive explanation at www.care-data.info or check out how care.data came about in our section called ‘What’s the story?’

The newer junk mail leaflet, which is being pushed through letterboxes across England throughout January 2014, is designed to make you think nothing extraordinary is going on. It is. The leaflet, which many patients may never actually see, is a study in evasion and omission, failing to mention rather significant pieces of information like the name of the scheme itself – ‘caredata’ appears just once in the leaflet as part of a URL at the bottom of the last page; it doesn’t appear at all in the first leaflet – and, more crucially, the new leaflet doesn’t contain an opt out form.

That’s because this is about consent. Or rather it’s about manufacturing consent.

For if you don’t act and opt out of care.data in the next 8 weeks, confidential information from your and your family’s medical records will be uploaded, and once it leaves their systems your GP will have no say in what is done with it. It will be presumed that you have consented for this to happen, and for your medical records to be passed on to companies and organisations outside the NHS – all on the basis of a leaflet which you may not even have received, noticed, read or understood.

After all, it’s being sent as junk mail, not to you directly as a patient.

But if you did get a leaflet, got the sense you’re not comfortable with the rather vague information you are being given and decide it would probably be safer to opt out – it is – you are instructed to… “speak to your GP practice”. Wrong! You don’t have to speak to your GP, and you certainly don’t have to book an appointment – you can opt out of care.data via letter or send in a form, copies of which we provide.

NHS England’s leaflet campaign is a deliberate and shameful attempt to make it as awkward for you to opt out as it can. And if this is how they are (begrudgingly) going about ‘informing’ the public about care.data, can the scheme really be trusted? If it can, then what have they got to hide?

What exactly is going on at the NHS Health and Social Care Information Centre (HSCIC)? A story in the Guardian last Saturday, ‘£140 could buy private firms data on NHS patients’, seems to have prompted some edits to the HSCIC website. The page for the HSCIC’s Data Access Advisory Group (DAAG) used to say, for example:

The Data Access Advisory Group (DAAG) is an independent group hosted by the Health and Social Care Information Centre which considers applications for sensitive or identifiable data. – our emphasis, source: Google web cache from 11 May 2013

But the current DAAG page on the HSCIC website – which, according to the page metadata meta name=”DC.date.modified” content=”2013-05-21T16:59:14+01:00″ scheme=”W3CDTF”, was modified at 4:59pm on Tuesday 21 May – four days after the publication of the Guardian article – to read simply:

The Data Access Advisory Group (DAAG) is an independent group hosted by the Health and Social Care Information Centre that considers applications for sensitive data.

Other pages have also been changed in recent weeks, such as the one about the HSCIC’s Bespoke data extract services. The top section of this page currently reads:

What is the data extract service?

Customers can order bespoke patient-level extracts or tabulations of health and social care data.

The data we supply is normally anonymised or de-identified. We only provide identifiable data when there is a lawful basis to do so e.g. with patient consent, a statutory gateway or with s251 support.

This data can only be made available to those who meet HSCIC’s robust Information Governance standards to protect and control how data is managed.

We oblige anyone who is eligible and whom we agree to supply with data to enter into a Data Sharing Agreement. These Agreements regulate how the data is shared and used and also detail storage security requirements and restrictions on onward sharing or publication of this data. We also reserve the right to audit adherence to the Agreement. The Data Sharing Agreement specifically prevents customers from attempting to link data and re-identify individuals.

You can find out more about our services for researchers, including how we are working with the Clinical Practice Research Datalink (CPRD), in the Data Linkage Research section of this website.

As compared to what it said on 7 April 2013 [web.archive.org snapshot]:

What is the data extract service?

Organisations can order bespoke patient-level extracts or tabulations of health and social care data.

Data will be provided in a de-identified form and we will only provide identifiable data where there is a legal basis on which to do so e.g. the patient has consented. Researchers can access this service via the Clinical Practice Research Datalink (CPRD)

or on 20 March [web.archive.org snapshot]:

What is the data extract service?

Researchers and organisations can order bespoke patient-level extracts or tabulations of health and social care data.

And on all of these pages, if you scroll down a bit further, you come to a link that says: “How do I apply for access to sensitive or identifiable data?” The clear implication being that one can apply for access to identifiable data.

As far as medConfidential understands, HSCIC does provide identifiable patient data to third parties and that – on top of any other fees it may levy – it charges (or has charged) an additional £140 processing fee for doing so. This seems like peanuts for access to identifiable data on individual patients, whatever procedures someone has to jump through to get it. And with the Commissioning Board (‘NHS England’) applying for blanket Section 251 exemption to pass around identifiable data amongst a whole range of commissioning bodies medConfidential believes patients have every right to be concerned that what may up until now have been relatively constained amounts of identifiable data leaving HSCIC may be about to become a flood.

In the interests of fairness and transparency, we decided to write to the folks at HSCIC so they can explain what’s going on. Here’s the text of our letter:

To: Dr Mark Davies, Director of Clinical and Public Assurance & Chair of Data Access Advisory Group, NHS Health & Social Care Information Centre

24 May 2013

Release of identifiable patient data from HSCIC

Dear Dr Davies,

We are writing to you regarding the circumstances in which HSCIC provides patient data in identifiable form to third parties. It appears that the HSCIC website may have contained some errors and, while we are aware that things are still adapting post-April 1st, we would like to clarify some details of the procedures around the release of patient identifiable data.

We have, of course, read the DAAG Terms of Reference and other information published on the website. We understand that HSCIC does receive patient data in identifiable form from a variety of sources and that HSCIC does provide patient data in identifiable form to third parties – not least because the HSCIC website lists three instances in which it provides patient data in identifiable form: where there is “patient consent, a statutory gateway or with s251 support.”

We therefore ask:

1) Other than by patient consent, a statutory gateway, or Section 251, what are the lawful bases on which HSCIC will provide patient data to any third party in identifiable form? “Where there is a lawful basis to do so” is broad and non-specific; what we would like is a specific and comprehensive list, something that a member of the general public could understand.

2) If a person or organisation has a lawful basis for requesting identifiable data and they satisfy the DAAG’s requirements as regards information governance and the particular request for data, is it the case that the DAAG will approve the provision of identifiable data from HSCIC? If this is not the case, who is the Senior Responsible Officer for such a release and what is the process by which they make that decision?

3) Can you confirm that HSCIC charges all third parties a fee for the provision of data in identifiable form? If there are circumstances in which this fee would be waived, please would you list them.

If any of these questions are not clear, please contact us on coordinator@medconfidential.org

Thank you for your attention. We look forward to hearing from you in due course.

Your sincerely,

Phil Booth and Terri Dowty, medConfidential

Audio, presentations and coverage of medConfidential’s inaugural conference held on 24th April 2013. Thanks to everyone who came, especially to all our speakers and hard-working volunteers who helped ensure everything ran smoothly.

Sessions and speeches as per the programme:

An overview of current policy including the General Practice Extraction Service (GPES); online access to medical records; the single care plan; the ingredients of valid consent – Phil Booth and Terri Dowty, joint coordinators of medConfidential

Phil Booth – audio (MP3) |presentation (.ppt)
Terri Dowty – audio (MP3) |presentation (.ppt)

Online patient records: safety and privacy – Ross Anderson, Professor of Security Engineering at the University of Cambridge Computer Laboratory

Ross Anderson – audio (MP3) |presentation (.pptx)

The next step: Linking medical records, DNA and genetic information – Dr Helen Wallace, Director of Genewatch UK

Helen Wallace – audio (MP3) |presentation (.pptx)

NHS Confidentially and Patient Advice – Helen Wilkinson, Coordinator of TheBigOptOut Patient Advice Line

Helen Wilkinson – audio (MP3)

Our right to medical privacy – Shami Chakrabarti, Director of Liberty

Shami Chakrabarti – audio (MP3)

Plenary: feedback from workshops

Sue White, Ross Anderson, Ian Brown and Phil Booth – audio (MP3)

The workshops covered:

(1) The single care plan for children and its extension to adults – Sue White, Professor of Social Work (Children and Families) at Birmingham University + Terri Dowty

(2) The GP Extraction System and patient confidentiality – Dr John Cormack, GP and Professor Ross Anderson

(3) Keeping data safe and why ‘anonymisation’ isn’t the answer – Dr Ian Brown, Associate Director (Cyber Security Centre) and Senior Research Fellow of the Oxford Internet Institute + Sam Smith, Privacy International

(4) A brainstorming session to assess the potential risks for each sector and steps forward – Phil Booth

Online coverage of the conference, including some video:

Liveblog of the conference on Light Blue Touchpaper

Report by Shibley Rahman on the Socialist Healthcare Association’s website (3 videos)

A ‘hat-trick’ from TechEye.net:
UK’s ‘anonymous’ health records are wide open
Your genetic make up to be stored, without consent, for profit
Shami Chakrabarti lends support to new health privacy campaign