How we are working with the public
We have a strong commitment to public and patient involvement in the Secure Data Environment programme. We have developed an extensive strategy that actively involves, listens to and engages with the population of the North East and North Cumbria.
Our approach builds upon the successful public engagement work as part of the Great North Care Record programme. We continue to work closely with the public, engaging them in discussions about how we manage and make information from their health and care records accessible to researchers and planners. Together, we are developing clear principles to ensure transparency and trust in how data is made accessible.
We have 16 public members who guide and advise the programme team. They are included in the meetings where key decisions are made. They have shaped our communication materials, provided us with guidance in setting up the Data Access Committee and take on a key role in reviewing whether applications to access data are in the public interest.
Meet Chris and Susan.
Our research
We have carried out an impact assessment on people who have already opted out of data sharing which provided useful insights into which groups of people are most likely to opt out. Insert link to document.
We have carried out two street surveys which collected the views of over 1500 people living in the North East and North Cumbria.
We continue to research and gather views from people across the region, from different communities to understand how they feel about their health and care records being used for research and planning. We are currently recruiting for focus groups which will take place in March and April 2025.
Where can I find out more?
Understanding Patient Data has a range of resources and materials which explain how health and care information is used in different ways.
