Following the launch of the new national data opt-out, health charities are sharing examples of how patient data underpins health research. There is a wide range of ways patient data can save lives, from improving diagnosis to ensuring patient safety. Here are just a few recent examples of the rich and diverse uses of patient data:

  • CRUK explain how their Cancer Intelligence team use patient data to investigate why fewer bowel cancer screening tests take place compared to other types of health screening tests. Looking at data such as patient age and the date that test kits were received and sent back will be used to judge the effectiveness of a bowel cancer screening campaign trial. This is one way patient data can help improve treatment and prevention.
  • MQ Mental Health highlight how patient data can play a role in identifying mental health trends. One study identified an increase in the number of children and young people being prescribed medication for depression and anxiety by their GPs. It also found that, in many cases, the treatment being offered was not the one most recommended. This shows where patient data can highlight areas for improvement in individual care.    
  • Diabetes UK describes research using patient data to help predict who might get Type 1 diabetes in the future, and what preventative treatments could be used. Studying patient data from families with Type 1 diabetes across four generations, including information about genes, gut bacteria and blood, has led to greater knowledge of diabetes and the immune system. In this example, patient data is contributing to understanding disease.
  • The King’s Fund comment on how patients opting out of sharing data could impact the accuracy of research findings. It outlines the recent introduction of the national data opt-out and its implications. There are many possible impacts if patient data is not available for research. For example, NHS services being planned without factoring in the needs of some patient groups.  
  • Macmillan Cancer Support summarise how they use three kinds of patient data. Firstly, national cancer registries, which allow Macmillan to better understand cancer prevalence, incidence and patterns in care. Secondly, their own in-depth patient interviews and surveys, which provide insight into patients’ experience. And lastly, the National Cancer Patient Experience Survey, which Macmillan used to identify key factors in patient satisfaction at a national level. In this last example, patient data is a tool for evaluating policy.         

Each blog gives more examples of the benefits of using patient data. We’ll be keeping track of other blogs published and will share them here and on the UPD website.   

If you missed them, you can also find our blogs on the potential impact of the national data opt-out, comparing the new national data opt-out to, and why it’s an opt-out and not opt-in.