Using your data

If a researcher asks to use people's health and care records which is hard to get, they must:

• Work in a place that people trust. Places like the NHS, a university or a medicines company
• Have training on how to keep the information safe
• Work on a project that is legal, safe and has good standards
• Work on a project that is in the public interest.

Before the researcher can see your information, the NHS will make sure that your name is taken out. This means the researcher will not know who you are - this is called de-identified data.

The views of people from Kent and Medway were central to some work that was done in 2023 and the Digital and Data Involvement Group wants the views to be as relevant and necessary today.

Health and social care organisations across Kent and Medway are working to ensure that every time you see a health or social care professional, they will have access to the right information about your health and wellbeing to care for you, and you will not need to “tell your story” each time you see someone new.

Health information, also known as your medical record, is personal information about your health and wellbeing. It is securely stored to ensure that only the people who are involved in your care have access to it. Each time you receive health or social care, any information relating to your health is recorded, and each organisation you come into contact with keeps their own records.

In some cases, data that has had personal information removed (de-identifiable health data) is used after approval by a Data Access Committee (made up of public members, and senior leaders in the NHS and social care). This means that any personal information is not seen (e.g. name, address).

This data can be gathered and used to find trends, for example with the spread of diseases, which helps health and social care services plan for the future. For further information, please see: Kent, Medway and Sussex Secure Data Environment for research

Update

The Digital and Data Involvement Group thanks everyone for their views. The poll closed on 25 August 2025. The results will be collated and the published report will be shared via this page.

Further information can be found at:  Kent, Medway and Sussex Secure Data Environment for research(External link)