Researchers in Kent, Surrey and Sussex consult with citizens about “unlocking health data”
In the South East England region of Kent, Surrey and Sussex (KSS), parts of the NHS are being joined together for the first time and are working on using NHS patient data to help understand the health needs of their populations. The NHS is also working closely with the county and city councils, which employ teams working in public health. These teams hope to use the joined-up NHS patient data to understand which local communities are at risk of poorer health, so they can design strategies to meet communities’ needs.
Researchers at Brighton and Sussex Medical School (BSMS) saw this as an excellent opportunity to ask citizens of Kent, Surrey and Sussex their views on how they would like these datasets of their health records to be protected, what sort of projects they hoped they would be used for, and how they would like to be involved in ongoing decision-making. Funded by the National Institute of Health Research, they hosted five discussion groups with 79 KSS citizens to give information on the new health datasets, and invite discussion about the issues.
KSS citizens supported the use of their anonymised, joined up health data to improve health service efficiency and resource management, to improve out of hospital services, and to make NHS services and information flows more joined up. Citizens were worried about data accuracy, data leaks and security, and commercial uses of data. They suggested that dataset teams should be transparent about uses of data, let the public know how data analysts would be held accountable if they broke the rules, and wanted to see ongoing, inclusive and valued involvement of the public in decision-making.
Dr Elizabeth Ford, Reader in Health Data Science at BSMS, who led the project said “We had a great response from a diverse group of citizens from across KSS and they really engaged with what their health data meant to them, and how valuable it could be to analyse it to improve services for everybody. There was so much enthusiasm from the participants, and they wanted to continue being involved and shaping plans for using data for health and care in KSS.”
The BSMS team are now working closely with the NHS and councils in Kent and Sussex to make sure the public’s views and preferences are embedded in how data infrastructure and governance is set up across both counties.
Dr Liz Ford, Lecturer in Medical Research Methodology, Brighton and Sussex Medical School, Brighton, UK
Ford, E., Rees-Roberts, M., Stanley, K., Goddard, K., Giles, S., Armes, J., Ikhile, D., Madzvamuse, A., Spencer-Hughes, V., George, A., Farmer, C. and Cassell, J. (2020) “ Surrey and Sussex: results of deliberative focus groups”., International Journal of Population Data Science, 5(3). doi: 10.23889/ijpds.v5i3.2114.