What is data linkage and how can we explain it to the public?
A new three-minute animation aimed at the public explains how the use of health records for research purposes has evolved over time and how it helps them.
One of our aims at King’s Health Partners is to use our collaborative strengths to improve coordination of patient care across physical and mental health, increase ownership by patients of their own health records, and to enhance clinical decision making through research and planning.
A key part of this work involves improving the patient data we share across organisations, which helps better coordinate their care. Data linkage is the joining of two or more independent databases that share a variable at an individual record level. For example, someone’s GP record and their hospital record will share a unique ‘NHS number’.
Linkage between different sources helps to improve the quality of information and enables researchers to look at patients’ healthcare in more detail. For example, investigating how general practice and hospital care might be better coordinated.
To explain this concept to patients, the National Institute for Health Research (NIHR) South London and Maudsley NHS Foundation Trust Biomedical Research Centre (BRC)’s Clinical Record Interactive Search (CRIS) team worked with patient advisory groups, including the Young People's Mental Health Advisory Group (YPMHAG) and the Data Linkage Service User and Carer Advisory Group to create a new ‘data linkage’ video.
The video was designed by a multidisciplinary steering group consisting of members of the South London and Maudsley NHS Foundation Trust CRIS team, mental health service users, researchers from the Institute of Psychiatry, Psychology & Neuroscience, King’s College London and mental health service users in collaboration with Really Bright Media. It illustrates the process of data linkage and the benefits for researchers.
Amelia Jewell, Clinical Data Linkage Service Lead at the NIHR South London and Maudsley NHS Foundation Trust BRC, said,
Data linkage is a vital component of research which helps us to understand the wider impact of health and illness. We wanted to create a resource that would help to explain what data linkage is and how it is conducted in a way that protects the legal and ethical rights of patients.
Two service users, who are part of the Data Linkage Service User and Carer Advisory Group supporting the project, said:
The creation of the Data Linkage video was a brilliant example of co-production; as service users we had parity with the members of staff contributing to the project in terms of informing the design and other decision-making.
The benefits of this Data Linkage Video are that it that it will help you understand how your data is used in the NHS and provides information, for example, on how it is stored and used. Data is really important for the NHS and this animation gives a complete understanding of your data's journey and how useful it is for NHS / academic staff.
The video has been funded by the NIHR and MRC pathfinder grant.
Liked this article? Read how we can best share London-wide health data – views from the public.