A lot of our patients are getting in touch about sharing their NHS data, so we thought it might be useful to tell you what we know.
For many years, anonymous data has been shared within the NHS and outside of the NHS for research purposes. The data is not about any individual. It is data about large numbers of patients (so called “aggregated data”).
It is also anonymised – which means that nothing that could identify an individual patient is included.
Every patient has always had the option of opting out of data sharing.
Sharing of this data has been vitally important. For example, it has helped research into advances in medicine. It has also helped to identify when additional healthcare services are required. Finally, it has assisted when making public health decisions – for example how best to respond to something like the coronavirus pandemic.
As far as we can understand, the new service has very little difference to the existing situation. The sharing of data has brought many benefits to all of us, and so we think it is a good thing.
However, it is entirely up to each of our patients what they decide to do. To help you decide:
- You may want to have a look at this video made by NHS Digital that gives you more information about the data sharing process here [Link: https://www.youtube.com/watch?v=YLi9gh7RyLA}
- You can find further information about how to opt out here [Link: https://digital.nhs.uk/about-nhs-digital/our-work/keeping-patient-data-safe/how-we-look-after-your-health-and-care-information/your-information-choices/opting-out-of-sharing-your-confidential-patient-information
- Please remember that if you do decide you want to opt out of data sharing, there are 2 alternatives: you can opt out of sharing your data other than to assist with your own personal medical care OR you can opt out of any data sharing. It is vital that you make it clear on any opt out form that you send us which alternative you have chosen, as we cannot amend your notes unless you do.
We are sorry that we do not have any other information to help you make your decision, but we hope you will understand that without data sharing, everyone’s healthcare will be disadvantaged.