We have been working with people across Kent, Surrey and Sussex to agree a set of principles on how health and care organisations use people's health data to:

  • Make sure people receive the right care and treatment,
  • support the planning of health and care services, and
  • carry out research to improve care and treatments for all.

What we did

We involved people in Kent and Medway in decisions about digital services and how health and care data is used, particularly through our work on the Kent, Medway and Sussex Secure Data Environment.

We set up public involvement groups so local people could help shape decisions from the start, not just be asked afterwards. This included a Public and Patient Advisory Group made up of people with different backgrounds, health experiences and levels of digital confidence, and a Kent and Medway Digital and Data Involvement Group focused on local priorities (such as data use and the use of artificial intelligence (AI).

We also shared clear information to explain what health data is, how it is protected, opt-out and how people can have a say.

 

What we heard

People told us they are supportive of health data being used to improve care and services, as long as it is done safely, transparently and for public benefit.

They want:

  • Clear explanations about the types of data, how data it is used, protected and shared
  • Strong rules about who can access data
  • Ongoing involvement in decisions, not one‑off consultation
  • Digital services that are accessible and do not leave people behind
  • Trust, openness and inclusion were consistent themes

 

What next

We will keep involving people as digital and data work develops in Kent and Medway.

Next, we will:

  • Continue working with public involvement groups to shape decisions
  • Improve clear, plain‑English information about digital and data use
  • Use what people tell us to support digital inclusion and reduce inequalities

This helps make sure digital and data developments are shaped with local people, not just for them. Read more about our work on the Secure Data Environment (SDE) - You and your data | ICS