medConfidential Bulletin, 21st February 2014

21 February 2014 — medConfidential

What just happened?

As you will by now be aware, on Tuesday afternoon the Director of Patients and Information at NHS England, Tim Kelsey, announced a second 6 month delay to the uploading of data from GP practices across England. The first delay to uploads last September was only achieved after medConfidential had alerted the Information Commissioner’s Office to the serious failings of NHS England’s original poster and leaflet ‘information campaign’ in GP practice receptions.

This time, NHS England finally bowed to pressure including: the launch of the first online opt out form, faxyourgp.com; the 300,000+ people who have downloaded medConfidential’s opt out forms and have been opting themselves and their families out of the care.data scheme in the past 4 weeks; clear signals from groups like 38 Degrees and SumofUs that hundreds of thousands more patients wanted to opt out; concerns from professional bodies such as the BMA; and the legal action that Leigh Day launched on behalf of medConfidential this Monday.

We shall continue to work with all of the above – and others – to ensure that patients are made aware of what care.data actually involves, of their right to opt out and of the means by which they may exercise that right on behalf of themselves and their dependents. We, of course, believe care.data is fatally flawed and advocate a complete stop to the scheme and fundamental rethink of how patients may choose for their data to be used for any purpose other than their direct care.

Opt out fixed

We are very pleased to be able to announce, exclusively to you in this newsletter, that the opt-out codes have now been fixed. On the same day that the 6 month delay was announced, we received a letter from the outgoing Director of Clinical and Public Assurance, Dr Mark Davies. The letter stated:

Where a patient objects to information containing data that identifies them from leaving their GP practice (type 1 objection), only the aggregate counts along with the GP practice identifier will be returned by GPES. No other additional data will be extracted.

So, rather than merely removing your NHS number, date of birth, postcode and gender and taking all the rest of your confidential medical information, now no data from your medical record will be extracted. The ‘aggregate count’ is simply a record of the number of patients who have opted out per practice.

In order to operate the second opt out – that prevents any of your identifiable data leaving the HSCIC once it makes its way there from other sources, e.g. hospitals, clinics, test labs, etc. – a completely separate extract containing just your objection and NHS number (not associated with any data from your GP record) will go to HSCIC, in order for them to be able to identify the data they must block from further release at their end.

This is of course the way that the opt outs should have worked in the first place, and no doubt NHS England officials will try to say that this was what they always intended. They will not be telling the truth, and we shall be providing proof of this when we give evidence to the Health Select Committee in Parliament next Tuesday, 25th February.

What next?

There is still a tremendous amount to do. Phil and Terri continue to lobby, handle media and coordinate with a wide range of organisations to inform them about care.data and to get them to spread the word to the people who they represent. Sam is close to completing our own online opt out form, which – unlike the online opt outs we have been helping others with – will enable people to opt out their dependents as well, and Helen and her volunteers at TheBigOptOut answer a growing number of calls to the patient advice line.

We’ll continue to alert GP practices when patients report issues such as being handed the wrong opt out form via our formFix tool. And we shall, of course, continue to raise awareness of the true nature of the care.data scheme in the media, the Parliament, across England and around the world. (This battle is already being noticed in other countries, where people are as deeply concerned for patients’ rights and privacy as we are.)

How can you help?

Spread the word! After the disastrous failure of NHS England’s second ‘public communications campaign’ it is quite clear that millions of people know nothing about what it going to happen to their medical records if they do not opt out. Don’t forget, the onlycontrol patients have to protect their medical records is to opt out – if they don’t, all their medical information will be uploaded in identifiable form.

GPs will still be compelled under powers in the Health and Social Care Act 2012 to surrender the data of patients who have not instructed them to add the objection codes – the ones in our letter and form – if or when care.data uploads begin in the Autumn. And there are going to be pilots before then; more about them in future bulletins, as details become available.
Please make sure you tell every one of your family, friends and work colleagues; you could print off and give people copies of our trifold form, as Gary and the NO2ID group have been doing up in Manchester; or post links to our website –http://www.medconfidential.org/ – on social media, in your blog, in forums you visit (but please don’t spam); and write a letter to your local paper, to your representatives, to the organisations of which you are a member (unions, professional bodies, etc.).

We have to reach 50 million people in the next few months – and don’t forget, the £95 billion ‘arms-length body’ NHS England will be trying to do the same. With a rather different message.

And finally

Thank you. Thank you for bearing with us these past 2 weeks while we worked to fix the operation of the opt-outs. Thank you for all the people you have told already about care.data – and the many more you will help to protect their family’s medical confidentiality in the months to come. And thank you for your continued support of what is after all a tiny campaign, though we of course work with and reach out into much wider networks.

I’m afraid we’re at a point where we must ask for financial support. The entire campaign thus far has been run on a single grant from the Joseph Rowntree Reform Trust, but our funding runs out at the end of April. If you can help us, please do – every penny given will be spent on averting this appalling breach of confidence and ensuring that in future every flow of patient data into, within and out of the NHS is consensual, safe and transparent.

Please make a donation via our PayPal page

N.B. Please do pass on 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 Terri Dowty
Coordinators, medConfidential
21st February 2014

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