What is this?
As part of running the health service, the Secretary of State can request that providers of services, such as your GP, must provide data. This information is used for a wide variety of purposes including:
- Managing and planning demand for services such as how many people are being diagnosed with particular illnesses
- Analysing the outcomes of services to ensure the health service delivery is getting results
- Recently, managing the pandemic
These are requested from your GP by ‘Data Provision Notices’ (DPNs) – which your GP is legally required to comply with. You can see all the current Data Provision Notices at:
https://digital.nhs.uk/about-nhs-digital/corporate-information-and-documents/directions-and-data- provision-notices/data-provision-notices-dpns
What is the main change?
Currently these Data Provision Notices (DPNs) are mostly single purpose; for example, an extract of numbers of patients diagnosed with dementia. Since they are single purpose, NHS Digital are commonly taking the same data more than once, so an audit report a few years ago pointed out this was inefficient and needed consolidation.
What is the ‘data grab’ the press is talking about?
As part of the work to consolidate the Data Provision Notices (DPNs) NHS Digital have announced a new data provision called the ‘General Practice Data for Planning and Research’ (GPDPR). We already had one for the pandemic purposes, but this will expire in September 2021 (unless extended). This is a general extract of ‘pseudonymised’ data – that is, the data cannot directly identify you, but it is possible, with the assistance of NHS Digital, to identify you from data NHS Digital hold.
No directly identifiable data is being shared with anyone outside your healthcare providers.
The information being shared is ‘coded data’ – this means things like particular conditions you have, basic details about you (age, area where you live), medications, some appointment data, vaccination status and so on.
Your GP notes are not shared – there are also a large number of excluded codes, so it is not your ‘complete GP record’ as some press reports have implied.
Why might NHS Digital need to identify me from this data?
This is a very rare circumstance and would be for purposes of your safety. For example, suppose that research into the data showed that people with a particular condition treated with a particular drug had poor outcomes, it may be necessary to inform your GP that you fall into this group so treatment would be changed.
Any re-identification will be within the NHS ONLY.
I don’t want my data used like this. Can I opt out?
Yes, you can opt out and how to do that is explained below.
If you are registered as a patient at Brunel Medical Centre and wish to opt-out, please complete the form below and post/email it back to the practice. The practice will then apply the code which will stop your data being extracted.
Brunel Medical Practice
Kingston Lane
Uxbridge
UB8 3PH
Email: [email protected]
Following representations from professional bodies, the Government has announced that the new data extractions will be delayed (previously due to start in July). The practice must receive and enter any opt-out requests before 25th August 2021. If you request the practice to apply the code later, your data will not be included in later extracts, but data already extracted will be retained.
We are aware that this new change has created concern for some patients, which is why we are providing this information. It is also creating additional workload for GP practices at a time when we are still dealing with the consequences of the pandemic, so please return any opt-out requests as soon as possible to enable us to code your record before the deadline.
We cannot guarantee that opt-outs received after 6th August will be coded by the deadline.
I thought this was what the ‘National Data Opt-Out’ was about?
The National Data Opt-Out (NDOP) applies to ‘confidential patient data’ – that is, data that is identifiable. The Type 1 Opt-Out is the only one currently available that covers the extraction of pseudonymised data.
You can exercise the National Data Opt-Out by going to the web page below. There is a postal form available if you need it.
https://www.nhs.uk/your-nhs-data-matters/
Can I speak to the Practice Data Protection Officer (DPO) about this?
You always have the right to contact the practice DPO – however this is a legal data extraction and the practice must comply.
The Data Protection Officer for Brunel Medical Centre is Dr E Norman-Williams [email protected]. He can also be contacted by sending a letter to the practice, or by telephone on 020 3350 4959.
IN SUMMARY
As it is a legal requirement for the practice to comply with this data extraction system, the advice is already clear – IF YOU DO NOT WISH YOUR DATA TO BE USED IN THIS WAY, YOU NEED TO OPT-OUT (you can also opt back in at any point in the future).