The current pandemic has thrown into sharp focus the crucial role of data analytics for understanding how well, or badly, our health system is coping, but searching for answers has been an exercise in frustration. What are the characteristics of the disease? How far has it spread? How many people have survived it relatively unscathed? What proportion of deaths outside hospital were caused by the virus? Who is most vulnerable and why?
The answers to these questions will emerge eventually, but for now it feels as if we’ve been caught on the back foot. The appliance of science to routine health and care data has not been given sufficient priority. The fragmentation of datasets and lack of common data standards across primary, secondary, community, and social care and public health has been tolerated for too long.
The crisis has underscored the need for a much more joined up approach to data collection and analysis, so yesterday’s announcement of the new Better Care initiative to connect these disparate data sources and learn from them is most timely. There is huge potential to gain valuable insights from data linkage and careful analysis, as illustrated by the projects chosen to kick start the programme – better care for frail elderly people and those with long-term conditions, improved scheduling in hospitals, closer monitoring of care home residents, optimal prescribing, implementing best evidence, sharing decisions with patients, and so on.
The Better Care programme will place strong emphasis on patient and public involvement in the design and conduct of the studies carried out under its umbrella. Again, the timing is propitious. The silver lining to the Covid-19 crisis is the huge increase in public understanding of the importance of health data science. We are all armchair epidemiologists now, scrutinising data models, arguing about mortality rates and wondering what the trends in hospital admission rates are telling us.
There has never been a better time to demonstrate to the public how sharing their data and using it safely and wisely to build knowledge is the key to better health and care services.