Following recent media coverage and some myths about how data will be used in future, this update provides a summary of how the NHS uses data and the benefits of sharing data, the types of data being shared, what’s changing and why and when these changes will happen.
How is patient data used?
Patient data is used every day to improve healthcare services through planning and research in England, helping to find better treatments and improve patient care.
It helps to decide what new health and care services are required in a local area, informs clinical guidance and policy, and supports researching and developing cures for serious illnesses, such as heart disease, diabetes, and cancer.
This video explains more about how NHS Digital collects and uses data.
What’s changing and when?
Patient data is already collected to improve health and care services. In the past, NHS Digital has collected patient data from general practices using a service called the General Practice Extraction Service (GPES). This system is over 10 years old and needs to be replaced.
NHS Digital has worked with doctors, patients, data and governance experts to design a new and improved system – known as the General Practice Data for Planning and Research Service.
This new system means data will be collected, stored and accessed in a more secure and more consistent way. It also aims to reduce work for GP practices so GPs have more time to focus on what matters most - patient care.
This new service, which will go live from 1 September 2021, offers many benefits.
It will help support:
- the planning and buying of health and care services
- public health monitoring and health interventions to improve people’s health and wellbeing (this includes the development of treatments for illnesses including Covid-19)
- many different areas of research that will improve healthcare for the benefit of us all
Will my personal data and my personal details be shared?
NHS Digital won’t receive any patient names or addresses. Any other data that could directly identify patients (such as NHS Number, date of birth, full postcode) is replaced with unique codes which are produced by de-identification software before the data is shared with NHS Digital. This process is called pseudonymisation and means that patients will not be directly identified in the data.
What data will be shared?
NHS Digital will receive the following types of information:
- data about diagnoses, symptoms, observations, test results, medications, allergies, immunisations, referrals, recalls and appointments, including information about physical, mental and sexual health
- data on sex, ethnicity and sexual orientation
- data about the type of staff who have treated patients
What if I have concerns about my data being shared?
We understand some people may have some concerns about data being shared. It’s your choice but it’s important you understand what’s being shared and why.
In response to some common concerns, we would like to reassure you that:
- It won’t be possible to directly identify patients from the data that’s shared
- The data won’t be used for marketing purposes - it will only be used to help us plan services and improve care across the NHS.
If you still choose to opt out of your data being shared by NHS Digital with anyone else for research and planning or anything beyond your own care then you can register for a national data opt-out. You can do this using the online service Your NHS Data Matters or by calling the NHS Digital contact centre.
However, if you don’t want any information held in your GP medical record used for anything that isn’t linked to your own direct care then you can also register for what’s known as a type 1 opt out with your practice. You can do this by returning this form to your GP practice and this will mean none of your data will leave the practice.
If a lot of people opt out, the information becomes less helpful because it won’t necessarily be representative of the wider population when we try and plan services and treatments for the future. We think it’s important you know that but it’s your decision.
Where can I find out more?
For more information about how NHS Digital uses data to support health and care, and for information on how you can opt out of your data being shared please see the NHS Digital website.