Study launched by Eastern teams to help shape how health data is used

All UK residents can take part in a survey to say how health data should be used to improve care and services.

Researchers are working with Cambridgeshire and Peterborough NHS Foundation Trust (CPFT) in the Eastern region to find out how people would like healthcare data to be shared, with whom, and what consent processes should be in place to protect them (survey participants under 16 require the agreement of a parent or guardian). Health data is information collected in the NHS that can be used to provide care, such as medication records, blood tests, and scan results, and sometimes also for research to improve care for others.

The study is jointly sponsored by CPFT and the University of Cambridge, led by the CLIMB (Clinical Informatics for Mind and Brain Health) project team and developed with CPFT service users and carers. It is funded by the UK Medical Research Council via a Mental Health Data Pathfinder Award and supported by the National Institute for Health Research (NIHR).

Dr Rudolf Cardinal, CPFT consultant psychiatrist and CLIMB project lead, said: “This study is open to all. We hope this will be the largest study of its kind and will find out the public’s preferences about the best ways to use health data safely and effectively. By taking part and giving your views online, you can help decide how health data should be used. We are asking how data should be shared within the health service for your own care, and how anonymous data should be shared for research to improve care for other people in the future.”

Dr Helen Macdonald, Chief Operating Officer at the NIHR’s Clinical Research Network for the Eastern region, said: “We are delighted to support this major study in the NIHR portfolio. More research is needed to find out how patients would like their health data to be shared and what they find acceptable. All contributions to this survey will be valuable to inform the next steps and develop new ways of using data to transform care and treatments.”

The survey will be open until June 2020. Results will be published when the research team has completed the study and analysed the findings from over 350 healthcare organisations across the UK.