Your Voice in NHS Health Data Decisions

NHS Kent, Medway and Sussex Secure Data Environment are undertaking a project to understand the impact of public involvement in decisions on who should access NHS health data for research.

NHS health data refers to any historical and current information concerning an individual's health and wellbeing. It is essential for direct care (e.g. diagnosis, treatment) but might also be used for service planning and improvement, research and public health or legal and regulatory compliance.

Please complete our 7 question survey (with 13 optional questions) to share your views.

How are the public already involved in decisions on NHS data?

People in Kent, Medway and Sussex have helped make decisions about how NHS health data is used for many years. It is important that people trust how their data is used.

Local people help through groups such as:

• NHS Kent, Medway and Sussex Data Access Committee – this group helps decide who can use NHS health data.
• NHS Kent, Medway and Sussex Public and Patient Advisory Group
• NHS Sussex Digital and Data People's Panel
• NHS Kent and Medway Digital and Data Involvement Group

We also have clear commitments about how NHS data should be used:

• Your Data, Our Commitment - Sussex Social Licence
• Our Data, For Our Good - Kent and Medway Social Licence

What is a Secure Data Environment?

A Secure Data Environment (SDEs) is a safe computer system used for research. It keeps NHS data private and protected.

In the Kent, Medway and Sussex Secure Data Environment:

• Only approved and trained researchers can apply to use the data.
• The data they see has personal details removed (like your name or address).
• They use the data to spot patterns, such as how diseases spread, to help plan future health and care services.

What are the benefits to me?

Using NHS data for research can:

• Make care safer: If data shows a medicine causes unexpected side effects, the NHS can alert health care professionals and patients.
• Improve treatments and prevention: Health data helps researchers find better ways to treat and prevent illnesses.
• Understand what works: For example, if a certain treatment helps many people to recover, it can be recommended more widely.

We know that people want to understand what happens to their data and to have a say in the decisions.

Why should I share my views?

We are asking people who live in Kent, Medway and Sussex to share their views in this survey. Your voice matters, and it will help shape our project.

Please complete our 7 question survey (with 13 optional questions about you). The survey should take 5 minutes to complete.

If you would like to complete a paper copy, please print off the attachment (titled 'Your Voice in NHS Health Data Decisions Survey' at the foot of this page) and post to the following address: FAO Kent, Medway and Sussex Secure Data Environment team, Floor 1, North Wing, 100 Temple Street, Bristol, BS1 6AG.

By taking part in this survey, you are helping us:

• Check how well the public’s voice is heard when decisions are made about who can use data in the Kent, Medway and Sussex Secure Data Environment.
• Work more closely with a wider range of people, especially groups who are often not heard, by partnering with trusted voluntary and community organisations.

We will be asking the same questions again in 6 months to determine whether there has been a change in people's views.

Thank you for taking the time to share your views. Your answers will help shape better, safer, and more inclusive use of health data for everyone.

Who is involved in the project?

NHS Kent, Medway and Sussex Secure Data Environment, NHS South, Central and West Commissioning Support Unit, Health Innovation Kent Surrey Sussex, NHS Sussex, NHS Kent and Medway, Kent and Medway Research Engagement Network, Social Enterprise Kent, Sussex Research Engagement Network, Brighton and Sussex Medical School and Public Partners have received funding from PEDRI to undertake a project to understand how effective the public voice is in making decisions on when data is used.

You can learn more about the project: Current projects - PEDRI

Contact Us

Email: scwcsu.kmssde@nhs.net

Address: FAO Kent, Medway and Sussex Secure Data Environment team, Floor 1, North Wing, 100 Temple Street, Bristol, BS1 6AG.