What just happened?

On Tuesday NHS England announced the care.data ‘pathfinder’ areas, but didn’t provide answers to basic questions like “Is it happening in my practice?” and “When will it start?” We await more details on the pathfinders, including exactly what patients (and GPs) will be told.

The four care.data pathfinder areas are:

• Leeds (3 CCGs: West / North / South and East)
• Blackburn with Darwen CCG
• West Hampshire CCG
• Somerset CCG

We sent out a background briefing on Monday with a list of questions to which we expected answers, but when none were forthcoming there was a bit of a storm in the media.

Where does your data go?

On Monday HSCIC published its latest quarterly data release register, covering the period April – June 2014. No insurers this time, but at least one recipient (Northgate) declares that its “market may also include commercial organisations” which highlights the dodginess of claims by officials that “solely commercial use” will be prohibited. Information intermediaries that service both NHS and commercial customers aren’t solely commercial, after all.

Worryingly, HSCIC’s new contracts don’t yet exclude commercial re-use. And with the over-broad “promotion of health” clause in the Care Act – the ‘McDonalds amendment’ we pointed out would include promotion through advertising, access by pharmaceutical marketers, etc. – there’s still a long way to go before patients can be satisfied that all the loopholes are closed.

Earlier this month, an updated care.data addendum in which NHS England sought to increase the types of uses to which patient data can be put, and the range of organisations and companies that can access it, was considered by the Independent Advisory Group for GPES (the system by which data is extracted from GP practices).

The addendum was approved, with conditions – including clearer definitions of “research” and “health intelligence”, independent oversight and further consideration of the expansion of purposes once the pathfinders are complete. Like us, IAG have significant concerns about the “lack of clarity about the data disclosure” after the pathfinder stage.

If patients are to be promised that all individual-level data extracted and linked during the pathfinders will be kept in HSCIC’s secure data facility, accessible to a small number of approved analysts, what’s the rush to widen future access now?

Opt-in / opt-out

Earlier in the summer, the BMA’s Annual Representatives Meeting voted that care.data should operate on a patient opt-in basis. While it does not appear that NHS England will be testing opt-in vs. opt-out approaches in the pathfinders, a representative of the Information Commissioner’s Office said at a recent conference that GPs could discharge their obligations under the Data Protection Act if they opt out their patients by default, so long as they put equivalent effort into contacting patients offering them an opt-in as they would have done for an opt-out.

What next?

Now the pathfinder areas have been announced, we are pushing to see exactly what patients (and GPs) will be told. In the meanwhile, if you do have concerns about care.data and if you haven’t done so already, our advice continues to be to opt out now. N.B. If you opted out of care.data earlier this year and had the ‘dissent codes’ added to your GP record, these will still work so you should not have to opt out again.

In the next few weeks, we expect Regulations to the Care Act – including further definition of the “promotion of health” clause, sanctions for data misuse and the operation of the Confidentiality Advisory Group (CAG) – to be laid before Parliament. We’ll publish more information as we have it.

Also coming up in Parliament is the Health and Social Care (Safety and Quality) Bill, Jeremy Lefroy MP’s Private Members’ Bill, scheduled for Second Reading on 7th November. No documents have been published as yet, but we intend to pay close attention to a Bill that intends “to make provision about the integration of information relating to users of health and social care services in England” and “to make provision about the sharing of information relating to an individual for the purposes of providing that individual with health or social care services in England”.

How can you help?

If you are registered with a GP in one of the pathfinder areas, we suggest you e-mail or write to your local HealthWatch and ask when the local public meeting will be held to talk about care.data. Please do let us know how you get on.

We are a tiny under-resourced campaign, but if you would like someone from medConfidential to address a meeting of your patient representative group or local HealthWatch please get in touch via coordinator@medconfidential.org. We’ll do our best to provide a speaker, or slides for you to use.

And finally

There is a great deal of confusion about forms relating to the Summary Care Record, local data sharing and care.data – some patients report having three or even four separate opt outs at their GP practice. One even offered a “Summary Care Data” opt out form. To be very clear, the Summary Care Record (SCR) is entirely separate from care.data:

• a Summary Care Record contains your last 6 months’ prescriptions, any major allergies or adverse drug reactions you may have and any information you have asked your GP to put on it. It is for access by medical staff providing you with direct care, and they should normally ask your permission before viewing it. The official form to opt out of having an SCR is here.
• There may also be local data-sharing arrangements in your area, usually for direct care purposes such as sharing information between your GP and a local hospital. Your practice should be able to tell you more about these, and provide an opt out form.

• care.data is all about ‘secondary use’ of your medical information – it has nothing to do with your direct care. No data has yet been extracted under the care.data scheme, so if you have concerns you can opt out now. You can always opt in later. There is no official opt out form, so we have provided a form or a letter for you to send to your GP.

If in doubt, please do talk to your practice staff but be aware that GPs and practice managers have not been told anything more about care.data since February.

Please do also forward this newsletter to your friends and family. They can receive future editions by joining our mailing list at http://medconfidential.org/contact/

Phil Booth and Sam Smith
Coordinators, medConfidential
10th October 2014