In order to register dissent for your children’s medical records to be used for purposes beyond their direct care (and why):
1) Protect your GP data: fill in and give this ‘Type 1’ form to your GP practice [PDF] – this form allows you to include details for your children and dependants as well. This is the most urgent step; the deadline to get your form to your GP practice is 23 June 2021, according to NHS Digital.
2) If you want to stop your non-GP data, such as hospital or clinic treatments, being used/sold for purposes other than your direct care (e.g. for “research and planning“) you must use this process:
- If you have children under 13, you need to fill in this form [PDF] and e-mail or post it back to NHS Digital – this form works for both you and your children.
- If it’s just for yourself, use NHS Digital’s online ‘National Data Opt-out’ process – this only works for individuals aged 13 and over.
- If you have an adult dependant for whom you have legal responsibility, you must use this form [PDF] and send it back to NHS Digital on their behalf
If you don’t have a printer
If you don’t have access to a working printer, you can ask the NHS Digital Contact Centre to post you the forms you need. Their phone number is 0300 303 5678 and they are open Monday to Friday, 9am to 5pm (excluding bank holidays), or you can e-mail email@example.com any time.
If there are TWO adults and ONE child in your house, for example, you would ask them:
Please send forms covering TWO adults and ONE child under 13 to object to the extraction of data from our GP, and a form to implement the National Data Opt-out for us all as well.
Remember to change the numbers IN CAPS to match the number of people in your household when you send the e-mail to NHS Digital.
Or, if you prefer – or if the forms from NHS Digital don’t show up (or they don’t send you what you need, or…) – you can e-mail children@medConfidential.org with your postal address and we will post you copies of the GP paper forms, for free, no questions asked (tell us if you have children under 13, or the online hospital data service hasn’t worked for you, and so you need the hospital data form as well as the GP data form). If you can afford to make a small donation to support us in offering this service to others, we have a donation page. We will, of course, only use your details to send you the forms you want and we will delete them as soon as we have done that. (medConfidential is registered with the ICO to process personal data in this way.)
Why does DHSC put you (and other families) through all this hassle?
The pandemic changed many things, but until 23 April 2021 and for much of the last year, the forms to express dissent for your children and other dependents were missing from the NHS Digital website. Instead, for up to a year it said:
Postal processing being temporarily unavailable might be considered understandable at the height of a pandemic, though it was clearly someone’s decision to remove the links from the website to prevent new processing.
This may not have been a concern in and of itself, but buried in NHS Digital’s Board papers is a statement that the Direction and Data Provision Notice for “GP Data for Planning and Research” was due to be published “to enable collection to commence (March 2021)”, according to the papers for NHS Digital’s Board meeting on 31st March 2021. That the new children’s opt out form did not appear until three weeks later suggests the discriminatory and inappropriate approach to dissent continues.
Before 2016, when the dissent process had been considered primarily from a patient’s perspective, the way to opt out was to give one piece of paper to your GP, which covered your entire family – and then the NHS would deal with any complexity. It did, and it worked. Over 1.2 million people used that process, which was possibly more than some would like…
In 2018, NHS England and the Department of Health and Social Care made a series of choices about how the National Data Opt-out Process (NDOP) would work; the effect of each of those decisions made it harder for someone to express their wishes:
- By cherry-picking who was invited to meetings, and on a narrow reading of the Data Protection Act 2018, one of those choices was that if you are over 13, you must do it yourself online. (The people to whom NHS England chose to listen at that point were those who believed your GP shouldn’t be an interface between you and ‘the NHS’.)
- Another such choice was that the databases used to validate that you are who you say you are online were not to be used to check if you had children who lived at home and who were registered with the same GP.
- In fact, the decision was then made that there would be no digital process for children at all – parents’ and carers’ choices for any of their dependents would have to be done via a form sent in the post. First that form had 8 pages, then 7, now 4, and (finally!) the option to send forms by e-mail, after feedback about the punitive nature of the process.
As a result of all this complexity, the GP opt out form – which, prior to 2018, used to work for your entire family for all NHS records – still works for your entire family, but only for your GP records. And since NHS England and DHSC chose to create another process, you now have to do that too!
The process doesn’t have to be this complicated. Most families have children registered with the same GP as the parent, living in the same house, so the NHS identity checks for adults should cover their dependent children. There will always be exceptions, families with more complex situations – the current PM’s for example – which is why a paper form is a necessary backstop. But having no web process at all starts to look more like a procedural punishment for families.
The Secretary of State or NHS England could have said that the process for dependent children (and other dependents) should be the same as for adults. Instead they shifted the bureaucratic burden from the NHS onto patients and families, in the hope you would care less about your GP data than their cronies who wish to buy it.
To register dissent for your children’s medical records to be used for purposes beyond their direct care (and why):
2) For your children’s and your own hospital and other non-GP data, fill in and e-mail or post this ‘National Data Opt-out’ form to NHS Digital.
3) Not forgetting that for your own hospital and other non-GP data, individuals aged 13 or over can also opt out (or opt back in) online.