The NHS’s plans to better use data held by GPs to support planning services and research has sparked a lot of discussion in recent weeks.
Throughout the pandemic, we have seen first-hand how the data held by the NHS can be an incredibly powerful tool. It has played an essential role in helping to quickly identify those who would need to shield and delivering the largest vaccination programme in the country’s history.
But what about in more normal times? How should the NHS use our data to support the planning and design of services or research ground-breaking new treatments?
What’s the latest with NHS data?
The latest programme, announced by NHS Digital in mid-May, will see data gathered by GP surgeries brought into a central database to make it easier for the NHS and its partners to use it for purposes that go beyond people’s immediate care needs.
In a letter to all GP’s today [19 July] Minister for Primary Care and Health Promotion, Jo Churchill set out a new process for commencing data collection, moving away from a previously fixed date of 1 September. Data collection will now only begin when the following criteria have been met:
- The ability for patients to opt out or back in to sharing their GP data with NHS Digital, with data being deleted even if it has been uploaded, and outstanding opt outs being processed.
- A Trusted Research Environment is available where approved researchers can work securely on de-identified patient data which does not leave the environment, offering further protections and privacy while enabling collaboration amongst trusted researchers to further benefit patients.
- A campaign of engagement and communication has increased public awareness of the programme, explaining how data is used and patient choices
You can opt out of sharing your data
If you do not want your GP to share your identifiable patient data for purposes except for your own care, you can opt-out by registering a Type 1 Opt-out. This prevents your data being shared with NHS Digital.
You can also register a National Data Opt-out, which will prevent NHS Digital from sharing your identifiable patient data for planning and research purposes. Your individual care will not be affected if you opt-out using either option.
Opt-outs (either type) that have been registered in the past will all be fully respected.
We have designed the collection with many safeguards in place to protect the privacy of patients, including removing all personal information that would directly identify patients before data is shared with NHS Digital.
By putting in place strict governance processes about who can access data and for what reasons, and being transparent about what data is shared and why, the programme aims to make patient data available safely and securely.
Making data available for research will lead to better:
- NHS services for patients
We are keen to hear your comments and feedback, please email us at: email@example.com