medConfidential Bulletin, 7th September 2018

7 September 2018 — medConfidential

Once more, a big thank you to everyone who confirmed to us receipt of the letter about the ‘conversion’ of your Type-2 objection to the National Data Opt-out. We are also grateful to those who shared the letter of apology for the appalling TTP error that led to 150,000 patients’ opt-outs not being honoured, and their confidential information being sold for three years.

What’s going on with opt-outs?

All of the National Data Opt-out letters should now have gone out. If you have still not received a letter, and believe that you should, we recommend you check your current opt-out status, firstly by using NHS Digital’s online National Data Opt-out process. If they have recorded your opt out, Step 4 will say “Your current choice: you do not allow the use of your confidential patient information” – if it doesn’t, then select the “No” option on that page, and complete the process.

If your objection had not been registered there, we strongly recommend you also contact your GP practice – remembering that most people will have asked for both types of objection to be applied; one nationally, one for your GP. If the opt-out codes you want are not recorded in your GP record, use a copy of our up-to-date opt-out form to re-express your wish that you do not wish your data, whether given to your GP or at a hospital, to be used for purposes beyond your direct care..

If for any reason you encounter any resistance or confusion caused by NHS England’s use of ‘shorthand’ (as a few people have reported) if asked, you can refer your GP practice to the RCGP’s official guidance; the section ‘Transition from the existing Type 1 and Type 2 objections’ clearly states:

The Type 1 objection ‘Dissent from secondary use of general practitioner patient identifiable data’ prevents any identifiable information leaving the GP record for purposes other than individual care.

These objections are coded in the GP record and will continue to be upheld until at least  March 2020. Before a decision is taken to revoke these objections, there will be a consultation with the National Data Guardian. Patients can therefore continue to register a Type 1 objection if they so wish and should be kept aware of this.

Signs of progress?

On a more positive note, it was announced in Parliament yesterday that the new National Data Opt-out, previously Type-2, now covers health data released by the Cancer Registry at Public Health England (PHE) in the same way as it covers data released by NHS Digital. An early indication that other health bodies can and will respect your dissent choices – even if what those choices mean in practice must be toughened up in line with new laws, i.e. GDPR and the UK’s new Data Protection Act.

DPA 2018 was led through Parliament by the new Secretary of State for Health, in his former role at DCMS. We thank Matt Hancock for that effort, and look forward to it being fully implemented in and across the NHS. The new Secretary of State brings a notably optimistic approach to technology and web standards. He may soon notice that when the NHS publishes information it doesn’t want patients (or him) to look at, it does so in long, impenetrable spreadsheets rather than readable web pages.

What’s happening next?

After the first of October, the Government will require any person wishing to express a dissent choice for their children (or other dependents, such as elderly relatives) to send in for each of them a seven-page form, with at least four forms of ID and documentation proving they are a responsible parent, to an NHS office in Leeds where officials will check the documents for authenticity. Your GP knows who attends appointments with whom – the presence of the child suggesting some degree of responsibility – none of which is known to NHS Digital.

The Department of Health has flat out refused to change their choice of deadline, and NHS Digital has shown no sign of delivering a digital opt-out process for families. They therefore place the burden on you, and every family wishing to make what they feel is the right choice for them.

Not coincidentally, this is also the first step in removing your GP from the ‘decision loop’ on choices about your data – because there’s a new ‘GP data extraction’ coming.

Yes, ‘care.data 2’ is on its way…

Precise details and timings are unclear at this point; NHS England does not even seem able to answer straightforward questions in a timely fashion. (Have you seen any evidence of awareness raising adverts about the National Data Opt-out? If you have, we’d love to see copies – especially as this is the proposed model for changes to organ donation.)

We shall of, course, keep you updated as we learn more – but another “collect once, use many times” assault by NHS England on the nation’s GP records is building.

Watch. This. Space.

What can I do?

Given the imminent removal of the Type-2 opt-out via your GP practice, and failure to provide a digital opt-out that families can use, now would be a very good time to write to your MP – expressing your concerns in your own words, maybe citing the thousands of people in your area (details for each CCG are in these “June 2018: Type 2” spreadsheets) who’ve already expressed such a choice, and asking for the Type-2 option at GP practices to be extended at least until any replacement has been shown to work.

Crucially, if you know anyone – friends, relatives, colleagues, or co-workers – who you think may be concerned about the uses beyond their direct care to which the sensitive confidential information in their and their family’s GP records may be put, then please forward this Bulletin to them, or point them directly to medConfidential’s opt-out form. For families, opting out is going to get much harder, in just three weeks’ time.

With activity building towards the next care.data, and given much other necessary ongoing work, medConfidential is in serious need of funds. Our programme of work for the next year is at this point only one-quarter covered, and our grant from JRRT ended this summer. Please, if you can, consider making a donation – a regular gift is most helpful.

 

Thank you.

 

Phil Booth & Sam Smith

7th September 2018

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