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People in Kent, Medway, and Sussex have been helping make decisions about how health and care data is used for a long time. It's very important that people trust how their health data is used.

To build trust and make sure everyone feels safe and included, we:

• talk, listen to, and work with local people and communities to understand what they need
• make sure to include everyone equally and fairly
• work together with members of the public when making important decisions.

NHS Kent, Medway and Sussex Public and Patient Advisory Group

The Kent, Medway and Sussex Public and Patient Advisory Group was launched in July 2024 and is a diverse group of people with lived experience of physical and mental health conditions. It includes members who are less digitally able, people from ethnically diverse communities, and members of the Trans Non-Binary and Intersex communities. As a group, it embeds insight from people and communities to drive the Kent, Medway and Sussex Secure Data Environment (KMS SDE) programme, with an emphasis on collaboration and co-production.

The group has so far shaped

• a plan for how to involve local people and communities in the programme
• ideas about how data is used and its' value
• how the public can be involved in decisions about data
• guidelines to help decide who can access health data.

[Image of a Public and Patient Advisory Group Teams meeting]

“It has been a pleasure working with the KMS SDE. There is a real desire to weave and embed public and patient involvement (PPI) across the work of the SDE and within partners working to inform it. But more than that - to build mutual respect. This has made collaboration in this space so much more enjoyable."

Michelle Gardener, Vice Chair of the KMS SDE Public and Patient Advisory Group

 

“The KMS SDE Advisory Group is the ideal forum to shape, inform and influence how all our data is used for public benefit. We sit at the very heart of information governance, so our views, perspectives and opinions are clearly heard. Our open communication style enables dialogue that is both diverse and expert in nature - ultimately enhancing decision-making. An innovative, valuable and most important advisory group that places people and communities at its inclusive and welcoming core”.

Katherine Verrall, Chair of the KMS SDE Public and Patient Advisory Group

NHS Kent and Medway Digital and Data Involvement Group

The Digital and Data Involvement Group was set up in March 2025 to ensure that the views and needs of our people and communities are at the heart of how we develop digital and data services.

The Digital and Data Involvement Group:

• help make sure that the view of the people and communities of Kent and Medway shape our work in relation to secure sharing of records to improve care
• help shape and improve digital and data related projects
• help NHS Kent and Medway understand and listen to the needs and views of our diverse population, including those who find digital access and services challenging.

[Image of the Digital and Data Involvement Group]

The Digital and Data Involvement Group has been working to co-design a set of principles on how data is used across health and care in Kent and Medway.

NHS Sussex Digital and Data People's Panel

The  Sussex Digital and Data People's Panel  was established in October 2023 to ensure that the views and needs of people and communities in Sussex are at the heart of the digital and data services.

In April 2025, the Digital and Data People's Panel published 'Your Data, Our Commitment' - also known as the 'Sussex Social Licence'.

Your Data, Our Commitment  is a set of principles on the use of data, which have been co-designed by local people and communities, and digital and data leads from Sussex.

These principles have been adopted by the Sussex Integrated Care System (ICS), and underpin the approach to the use of data in healthcare in Sussex. The Sussex ICS is the first healthcare system in the country to co-design and publish a Social Licence.

[Image of the Sussex Digital and Data People's Panel]

NHS Kent, Medway and Sussex Data Access Committee

The Data Access Committee reviews and assesses data access requests from researchers to ensure applications are ethically and scientifically appropriate, either approving or rejecting them. 30% of the membership must be public members from Kent, Medway and Sussex.

Public members are full members of the Data Access Committee, with equal decision-making as other committee members. The purpose of the role is to:

• bring voices from people and communities across Kent, Medway and Sussex to inform decision-making on data access requests
• approve or reject data access requests
• help ensure decisions are transparent, open and ethically sound, and made for the public benefit.

Each of these groups and representatives ensure the public voice is heard in decisions about how health and care data is used.

Find out more about the Kent, Medway and Sussex Secure Data Environment.