Secondary use of clinical data at a national level - lack of media and public debate is usually a stopper

27 July, 2021

England is discussing a system to duplicate family doctos’ notes on a secondary data server for uses for planning and research. This discussion chaired by Beautiful Information and ODI Leeds and shared with me by an expert patient and friend may be of interest:

https://odileeds.org/blog/2021-07-16-gpdpr-gp-data-sharing-outcomes-from...

On Thursday 8 July 2021 and as part of our #OpenDataSavesLives https://opendatasaveslives.org/ 2021 event series, we featured a town hall style debate around the hot topic of #GPDPR (sharing of general practice data for planning and research).

During the event, we asked the #OpenDataSavesLives community to submit their response comments and questions on NHS Digital's GPDPR strategy.

*Summary of key discussion points (as written by attendees):*

The discussion with the public is key, and not usually done well.

Open Approaches as well as Open Data is important - Sharing the Stories, Technical details as well as Data and Code. In many aspects sharing our work and working out loud can be as important as sharing the data.

Different people have different amounts of risk from reuse of their personal data.

Navigating the media is so important.

There needs to be more feedback to patients on how the use of data in these ways are actually benefiting the wider population and there maybe less confusion for them.

This is about patients being adequately informed so that they do not view it as a surprise that will then breed distrust

HIFA profile: Richard Fitton is a retired family doctor - GP, British Medical Association. Professional interests: Health literacy, patient partnership of trust and implementation of healthcare with professionals, family and public involvement in the prevention of modern lifestyle diseases, patients using access to professional records to overcome confidentiality barriers to care, patients as part of the policing of the use of their patient data

Email address: richardpeterfitton7 AT gmail.com