How data in your GP record is used and how you can control use [opt-out]
All patients joining the practice receive some information in their "New Registration Pack" regarding the various data sharing and how to "Opt Out" of primary use and/or secondary use, should they wish to.
Your data is used in broadly two different ways:
1-to provide you with care. This is called "primary use"
2-to allow for planning and research to be done. This is called "secondary use".
Both uses will only be made where it is considered secure and appropriate to use patient data.
Opting out of data sharing is an option for all patients, however, it is not without potential downsides.
For primary use data, if you opt out and need care in a local hospital, for example, it may be much harder for the staff to access important medical information about you, needed to provide safe and effective care.
For secondary use, although more indirect, if everyone in the country were to opt-out, it would make it much harder to ensure funding used in the NHS to develop services where they are needed. It would also be harder to develop new treatments.
It is possible to opt-out of specific parts of data sharing, while keeping some elements of data sharing in place. It is common, for example, for people who have privacy concerns about secondary use, to be happy to continue sharing data for primary use/direct care.
Patients may be aware that NHS Digital intended to uplift a large amount of patient pseudonymised information on 1st July 2021. This information is intended to be shared with various companies at NHS Digital discretion and choice and as the data is to be pseudonymised, rather than anonymised, there remain some concerns that companies may be able to ascertain more information than originally intended. GP surgeries are legally bound to meet NHS Digital request in this instance, however, objections were raised at the short notification period given to patients and primary care alike. It has now been suspended until October 2021, with patients having until 30th September to register their objection via a type 1 opt-out.
This data lift is completely separate and additional to the National Data sharing in secondary use, for which patients must register an opt-out direct with NHSE.
Type 1 opt-out-complete an opt-out 1 form, available online with NHS Digital or from the surgery [copy attached with this information directive].
National Data opt-out-visit the NHS website or use the NHS App
Primary use opt-out [refuse consent for upload to national shared electronic record and/or refuse consent for upload to local shared electronic record-speak to the surgery to advise staff of your preferences.