NHS Digital Data Sharing: What you need to know about changes to how your data is shared

Update 09/06/2021 – the deadline to opt out has now been extended to 30 September 2021. Read what NHS Digital said here.

Starting from July, GP data will be collated in a central database run by NHS Digital. Historical data going back 10 years and new records will be centralised. This will create a significant resource of patient data which third parties such as pharmaceutical companies and researchers will be able to apply to access. There are cases in which your data will be shared regardless of what you choose e.g. national emergencies like coronavirus.

What are the concerns?

Some people and groups are concerned about a lack of transparency in this process. With the deadline drawing nearer, many may still not be aware of the changes or have enough time to make an informed choice. Medical data can be highly disclosive and the speed of this roll out does not reflect the sensitivity of this data. NHS Digital’s move is being described as a ‘data grab’ with many calling for the process to be scrapped and restarted.

What choices can you make about your data?

You can take the steps outlined below to stop your data being collected and shared. Medconfidential have produced a thorough guide – including guidance on dependents and what to do if you don’t have access to a printer – which you can access here.

  1. Type 1 opt out – stop NHS Digital from collecting your data. Type 1 opt out stops your data from being collected from your GP practice once data sharing is rolled out in July. The deadline is 23 June. The form in the link needs to be completed and a physical copy returned to your GP practice. You can opt out after the deadline but your data (including historical data going back 10 years) will be collected in the meantime.
  2. National data opt out – stop NHS Digital from sharing your data. The national data opt out stops sharing, including data from hospital settings, but crucially, it does not stop the collection of your data. Filling in the Type 1 form is the most time sensitive but both steps are key to opting out.