NHS Digital England - NPC Synopsis

Whilst we all understand the importance of collection of data for a variety of research and analysis to help improve and run health care services as well as planning and commissioning of those services, the overwhelming majority of the general public (including NPC members) have no idea that this is happening.

From 1st July, GPs will transfer patient data to NHS Digital. No names or addresses will go with the data – this is replaced by a unique code – which is held by NHS Digital. However, there is a question around the access that could be given to academics and ‘third parties’.

The major issues for us is that the only information regarding this is on the NHS Digital website.

Individuals can opt out, but again this is a form on the website with a coded number, which you need to complete and then give, take, send to your GP. The deadline for doing so is 23 June which is absolutely unacceptable given that millions of people have no idea what is happening.

Members around in 2015/2016 may remember the consultation we undertook on care.data when we were able to issue two template letters to members to let their GP know they either opted out or opted in. We clearly cannot repeat this on the current deadline and the fact that the opt out form is an online only function. Care.data was abandoned because of complaints about confidentiality and commercial use.

We met with an organisation called Foxglove on Tuesday afternoon this week and have another meeting with them at 9.30 am next Tuesday (1 June). Foxglove monitors data protection and challenges the government and organisations like Google on GDPR issues. There is an urgent need to stop the process going forward to the deadline of 23 June and to lobby for a full and proper public consultation on the project.

Foxglove have sent letters to Matt Hancock and Simon Bolton (CEO NHD Digital) asking very searching questions of GDPR, impact assessments and a list of those NHS Digital say they have consulted with. It also asks how both departments intend to communicate to every patient the fact that their data will be collected and stored. The deadline for those responses is Friday 28 May.

Foxglove asked if we would be interested in a legal challenge (either a Judicial Review which would stop the process) or some other action. We told them we had no money and that the decision would be with the EC. Apparently it’s good that we have no money!

After discussion, we agreed that we would feedback from the meeting with Foxglove on Tuesday and made EC members aware there may be a need for us to ballot on the information we have at that time. In the meantime, we will do a press release and also ask every member here to reach as many members in their areas, family, friends, MPs etc.

With this synopsis comes:

1. Copy of the legal letter to NHS Digital/Secretary of State – they contain both the same issues and questions.

2. NPC letter to Jonathan Ashworth, Shadow Secretary of State

3. NPC letter to Simon Bolton, Acting CEO, NHS Digital

4. A range of links to articles about NHS Digital and the difficulties MPs have raised.

5. The article in the Financial Times

6. Link to Foxglove & petition

7. Link to MedConfidential & how to opt out

Jan Shortt

NPC General Secretary

You can download the synopsis below

nhs.digital.27may2021