medConfidential Bulletin, 9th March 2018

It has been a while since we last sent a newsletter. Our apologies for that – we have been kept busy on a number of fronts, but rather than spam you with speculations we believe it’s better to communicate when there are significant developments.


New national opt-out for medical records

An announcement has been delayed for some months and there’s still some time until action is taken, but to quote NHS Digital last week:

The Secretary of State has agreed that the national data opt-out will be introduced alongside the new data protection legislation on 25 May 2018. It has also been agreed to present the national data opt-out as a single question to cover both research and planning. Type 2 opt-outs (which currently prevent identifiable data from leaving NHS Digital) will be converted to the new national data opt-out when it is introduced in May. Patients with type 2 opt-out will be contacted directly about this change.

There are still a number of important questions to be answered, but we’re working on those for you. For example, at this point, the Government has not yet confirmed that every data release that would be covered by the Type 2 opt-out will be covered by the new opt-out.

medConfidential has yet to see the final wording of the question, but this announcement is clear confirmation that if you opted out in 2014 (or subsequently), you will be sent a letter about what happened. We also haven’t yet seen the wording of the letter, as we and the other members of CDAG (the Advisory Group) would previously have done, but apparently we are to be consulted on that too. When we have the ability to cite formal statements on the new process, we will update our website – this is likely to be in May.

So, if you have already opted out, the NHS will write to you about the new opt-out model. Whether anyone will tell other people remains unclear. We do hope the Secretary of State won’t snatch defeat from the jaws of a victory which could improve patient confidentiality and everyone’s confidence in how the NHS uses data.


This week: Data Protection Bill

The Data Protection Bill was delayed by political squabbling, but must pass by early May, and is now on a very tight timescale.

medConfidential’s concerns with the Bill relate to something called the “Framework for Data Processing by Government” which, in effect, creates a ‘Data Controller in Chief’ who can ignore the Information Commissioner, and the fact that the Government wishes to deny your ability to access information on how your records are used, if that might be used by someone else at another time in a way which may “prejudice… effective immigration control”.

Thanks to a great deal of work by many concerned groups and organisations, the Government no longer considers this framework above the law, just above enforcement of the law. The Rule of Law requires that justice both be done, and be seen to be done – requiring transparency that Governments and companies often prefer to avoid.


What you can do

Many parts of England have local elections in May. The ongoing stealth reorganisation of the NHS in England (into 44 “Sustainability and Transformation Partnerships” and “Integrated Care Systems”) will give your local council more responsibility for data re-use in your area. No details will be given until after the elections – of course! – but if anything does emerge before that, we’ll let you know.

The health and care issues that most burden the NHS differ from place to place, sometimes quite widely. So when local politicians ask for your vote in the next few weeks, you might ask them what their council would do about the biggest issues in your area.

You can see the top three issues most impacting health in your local authority, and those nearby, on this map:

(Created thanks to current data from Public Health England, and with the help of tools provided by Democracy Club whose volunteers collate and share information on elections across the UK.)


What’s next?

medConfidential keeps working even when we’re not sending newsletters; we won’t spam you if there’s nothing important to say. As you can see from this Bulletin, we are approaching another critical time for patient confidentiality that we hope can be negotiated with far greater success than in 2014! If you appreciate our ongoing efforts, we accept donations. Thank you for your support.


Phil Booth & Sam Smith
9th March 2018