From 1 July 2021, new NHS Digital data sharing regulations come into force called General Practice Data for Planning and Research (GPDPR).
The NHS Constitution states that patients have right to decide on how or whether their personal and confidential information is used and shared which is in line with current data protection legislation and other laws.
Patient data held by GP practices and NHS Digital can be used for two purposes: personal healthcare, e.g., through the Summary Care Record (SCR); and planning/research, e.g., universities, pharmaceutical companies.
GP practices must upload data to NHS Digital as part of payments and other contract requirements which is a legal obligation.
NHS Digital collects data from other NHS organisations such as hospitals or other clinics.
An individual’s complete medical record will not be uploaded to NHS Digital but coded and structured information is collected.
Data usage and security is processed, monitored and governed under strict laws and guidelines including ways of anonymising personal confidential information.
Patients have several options to choose from about the use of their personal data by NHS Digital: Summary Care Record, National Data Opt-Out, and Type 1 Opt-Out.
Summary Care Records (SCRs) are a way NHS Digital can share information with organisations for individual health and social care from GP medical records, e.g., A&E, pharmacists, out of hours services, community care.
An enhanced SCR is the default choice for everyone – to make choices about having a basic or enhanced Summary Care Record or not having an SCR at all, this can be modified through your medical record account online, or by completing a form available online here or from reception.
National Data Opt-Outs (NDOO) and Type 1 Opt-Outs relate to data sharing for planning and research with data held by NHS Digital and from GP medical records respectively.
To make a choice for a National Data Opt-Out for yourself or someone else please go to https://www.nhs.uk/your-nhs-data-matters/manage-your-choice/, contact NHS Digital direct, or use your NHS app.
To make a choice for a Type 1 Opt-Out please download and complete this form, Type 1 Opt-Out form, or contact reception for a form and send it back to your GP practice.
There is a deadline of 23 June 2021 to submit a Type 1 Opt-Out if you want to make sure NHS Digital does not use any data from your GP records for planning and research; however, if you have already submitted a decision no further action is required. If you submit a Type 1 Opt-Out form after 1 July 2021 then any data shared with NHS Digital prior to this date will be kept.
You can choose to opt-out of both or either and it would seem sensible to complete both together as there is practically little difference in principle between the two data sets. From 1 October 2021, NHS Digital intends that Type 1 Opt-Outs will be replaced with NDOOs.
Remember your decision(s) can be changed at any time.
For further detailed information about all of these options, and things to consider, please refer to the practice’s Fair Processing (Privacy) Notice which is available on the practice website via this link or you can ask reception for a copy.
Information about GPDPR, NDOO and Type 1 Opt-Outs go to: https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-collections/general-practice-data-for-planning-and-research/transparency-notice
Information about data collection, sensitive data and data security: https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-collections/general-practice-data-for-planning-and-research/advice-for-the-public
Information about SCR go to: https://digital.nhs.uk/services/summary-care-records-scr/summary-care-records-scr-information-for-patients.
For any queries, please contact NHS Digital by phone on 0300 303 5678 or via email at firstname.lastname@example.org or post the Contact Centre, NHS Digital, HM Government, 7-8 Wellington Place, Leeds LS1 4AP.
Please do not contact the practice with detailed questions about these matters as we will be unable to answer them; except for those which we are obliged to respond as outlined in the privacy notice.
Please see the resources and links above including NHS Digital contact details.