You may have seen media coverage last month about new plans for sharing NHS patients data.
The proposals involved patients’ GP records being shared for planning and research purposes, beginning on 1 July. This would have meant that any patients who didn’t want their data shared would have needed to opt-out by 23 June.
The start date was then delayed until September, but this week it was announced the project has been paused, pending a review. Consequently, there is no need for patients to ‘opt-out’ by September.
Why has the original plan been paused?
Many groups and organisations, including the Royal College of GPs (RCGP) and the British Medical Association (BMA), called for the plan to be delayed. Concerns included a lack of general awareness of the proposal, a limited window for patients to opt out, and a lack of clarity about the uses of patient data.
In particular, it was felt that patients should have more transparent control over their data. This should include who it is shared with and why, any associated benefits and risks, and how they can opt-out.
The initial plan would have allowed patients to remove their consent after the data was first collected. But this would only have stopped new information from being shared, meaning all previous information would remain available.
What happens next?
In a letter sent to all GPs on Monday 19 July, it was announced a review would be carried out in collaboration with the RCGP and BMA, amongst others.
Most significantly, it was also announced that any new data collection would not begin until four conditions have been met. These are:
- Patients can opt out at any point and have any previously shared data deleted.
- All opt-out requests from patients have been processed
- NHS Digital has developed a ‘Trusted Research Environment’
- An engagement campaign has increased patient awareness of the scheme and what it means for them.
The ability for patients to change their preferences and have all their data removed, if it had already been collected, is a significant change. This gives patients greater and more transparent control over their information.
Why is sharing data important?
Your data can be shared for two main reasons: your health care and designing health services and planning and research.
The first reason means that when you need care from the NHS – whether in a hospital, GP practice or elsewhere – important information like health conditions, allergies or reactions to a specific medication is available to the people looking after you.
Health services need to be designed to suit the needs of patients, and patient data helps the NHS understand precisely what those needs are. Data was also vital to creating Covid vaccinations, as it is for developing any new forms of treatment.
Your data, your options
With any new data-sharing plans paused for further review, and until the four conditions can be met, there is no deadline for patients to take action.
Here is who data is shared with for those two uses and how to opt-out.
Primary Use – sharing your data for your direct care
| Who it is shared with | How it is used | How to opt-out |
| Summary Care Record Great North Care Record | These are used by NHS hospitals and other providers (e.g. midwives) to ensure they have the data needed to provide you with the right care. | Opt-out through the practice – send a request through Salvie, and we can update your preferences. |
Secondary Use – Using your data to design health services and do health research
| Who it is shared with | How it is used | How to opt-out |
| Local NHS Organisations (such as Clinical Commissioning Groups) | Using data to plan how to design local services around the needs of the population | Complete and email a ‘type-1 opt out’ form to us at: ngccg.jesmondhealthpartnership@nhs.net |
| NHS Digital | Using data to plan and design national services around the needs of the population | Complete and email a ‘type-1 opt out’ form to us at: ngccg.jesmondhealthpartnership@nhs.net |
| External research organisations | Using data for various research purposes | Use the National Data Opt-out – Visit the NHS website, use the NHS App or call 0300 3035678 |
One of the conditions for any new data-sharing to begin is that all outstanding opt-outs need to be processed. We will share any news proposals or agreements as and when they are available as well as the options you have to safeguard your information.