NHS Data Sharing – Approaches to making a decision about opting out

Your health data:  Your GP holds your health record, and it is used by them and other parts of the NHS for your direct care. You cannot opt-out of your data being used for this. NHS Digital currently also uses some of your data for research, planning, and improving the NHS. However, under a new initiative a very wide range of information about you will be used much more widely and this will also be available to some third parties who will pay to access it. This includes, for example, research organisations and pharmaceutical companies but not insurance companies. Although all data shared with external organisations will be “coded” to remove some personal details the NHS reserves the right to decode it under certain circumstances. However, it is also possible, in our complex digital environment, to “reverse engineer” this anonymity.

Your Choices: You may feel comfortable with this and see the advantages, or wish to do nothing, in which case you will automatically be Opted-in to these changes. Alternatively, you can exercise your right to choose to fully or partially Opt-out. You might also consider that all other data processes (eg Banking, Memberships, website cookies etc.) requires people to Opt-in according to General Data Protection Regulation (GDPR) legislation; you are not being given this choice.

It is suggested that you should read not only the very complex information on NHS websites (see below), but to balance this with widely available critiques in the media and online which outline reasons for concern.

You might also consider where your data goes and what it may be used for and by whom and who benefits, both now and in an uncertain future.

If you don’t want your patient data to be shared for purposes other than for your own care, you can Opt-out by registering a Type 1 Opt-out or a National Data Opt-out, (previously called Type 2), or both. Your individual care will not be affected if you Opt-out using either or both options.

These two opt-outs are different.

• A “type 1” Opt-out prevents your information being shared outside your GP practice for purposes other than direct care.
• A “National Data” Opt-out prevents your information being shared outside NHS Digital for purposes beyond your direct care.

More information can be found on this page: General Practice Data for Planning and Research (GPDPR) – NHS Digital

First decision: Opt-out form to give to your GP Practice

The Type 1 opt-out form is extremely difficult to locate online and cannot be copied and pasted from the NHS site so it can be found at this link:  https://nhs-prod.global.ssl.fastly.net/binaries/content/assets/website-assets/data-and-information/data-collections/general-practice-data-for-planning-and-research/type-1-opt-out-form.docx

Second decision: National Data Opt-out for Research and Planning. This is usually completed online. 

More information on this and the Opt-out online process, (or call 0300 303 5678), can be found at this link:   Make your choice about sharing data from your health records – NHS (www.nhs.uk)

To provide more time to speak with patients, doctors, health charities and others, the collection of GP data and National Data has been deferred from 1 July to 1 September 2021.  There is some confusion about deadlines:  As the situation stands currently, an Opt-out for Type 1 data (eg using the form), should arrive at your GP practice by the 23 August 2021. However there appears to be contradictory information on this and also on the Opt-out date for the online process for National Data.

It is recommended that if you wish to Opt-out of either or both, that you register your decision as soon as possible.

 Primary sources of information: NHS and NAPP websites. Further informed by research from East Sussex Patients and PPG members