Opting Out Of Sharing Your Information – What patients need to know

You may have seen media coverage lately about GP records and your ability to opt out of sharing your data.

NHS Digital extract information in a pseudonymised form i.e. without specific data such as to your name, address and date of birth. This information is replaced with number sequences that do not relate to the individual and, therefore, do not leave the information as personally identifiable. This data is used for things such as research.

NHSE have made the following statement –

“The organisations using the data to do this may be public sector bodies, charities, academic institutions or commercial organisations but they will all have a legal basis and legitimate need to use the data, which must be used for healthcare planning and research purposes. We do not sell the data. We will recoup the costs of providing the data as we are not funded to do so. We will not allow it to be used for commercial purposes such as marketing, insurance or market access. Requests for data will be stringently assessed, applications will be scrutinised by both an independent group of experts as well as GP representatives before any record level data is accessed and we publish all data sharing agreements on our website. We then carry out independent audits and, where necessary, post audit reviews to check that data applicants are meeting their obligations and publish these audits on our website. We do these things to ensure that data sharing is as transparent, safe, secure and privacy-protecting for patients as it can be.”

You have the option to opt out and prevent your data being used for this purpose,  see the link here – digital.nhs.uk/data-and-information/general-practice-data-for-planning-and-research

You can also find the form on this site – /practice-information/gdpr-privacy-notice/ under Opting out of NHS Digital collecting your data (type 1 Opt-out).