A sea change in understanding the value of data

James Reed, Chief Clinical Information Officer and Consultant Forensic Psychiatrist, Birmingham

“There is nothing new about the idea of using data to understand and address problems that drive improved outcomes in health – Florence Nightingale is well known for her use of mortality data infographics to improve the conditions in field hospitals. However, even though over time we have collected more and more data - especially with the dawn of digital patient records - it has often felt to staff on the front line that the insights and benefits it can offer to care have receded further and further away. It can be difficult to see the impact of all the data collection that staff are asked to make on the patient in front of you.

“However, we are now in a time of change. Data is becoming more visible and useful at all levels. Various initiatives, like the Global Digital Exemplar programme, have provided significant investment to develop technical capabilities in health care providers. The more recent ‘Shared Care Record’ programme, building on the success and learnings of the Local Health and Care Record programme, is energising local efforts to bring data together from individual providers into common platforms. Having a shared view of patient information across providers involved in a person’s care is nothing less than transformative for that individual - but it also provides an enormous opportunity for population health management. Within any given area there will be variations in health care needs and having a better understanding of, for example, the prevalence of a particular disease in an area will allow the resources needed to meet those specific needs to be allocated.

“One of the major frustrations in the past has been that, as the technology has improved, the legal frameworks needed to enable fast access to the data (whilst safeguarding the rights and confidentiality of the patient) have been much slower to emerge. Rather than putting the needs of the patient first, concerns about being sued or receiving heavy fines have stifled progress. There has been a need to build trust with the public that their data will be handed properly. But there is also an ongoing need for simpler information governance advice and support which can build staff confidence in sharing information appropriately.

“The COVID-19 pandemic has had a profound effect upon health care provision, driven by the need to rapidly adapt to new challenges. The awareness of the importance of health data is one obvious change. Never before have the public at large had such interest in the detail of daily changes in disease rates etc. They have been directly engaged in data collection, for example, King's College London’s COVID-19 Symptom Study, and have seen how this has been used to drive improvements in treatment as well as decisions at a local, regional and national level. They have also witnessed the rapid development of vaccinations and seen how data has been used to prioritise delivery. Barriers to the access and use of data have also been swept away by the strength of the clinical case.

“These advances are clearly directly related to the pandemic, but they also represent a sea change in how we approach the use of data and how the public at large and health professionals regard it. We now have a great opportunity to build on this work and apply it to all the other major health challenges which face us. In spite of this progress it would be easy for us to fall back into old ways of thinking as the pandemic recedes, and for the good of our patients we cannot allow this to happen. We have only just begun to see the benefits that ready access to data can bring to our health care organisations, our staff and most importantly to our patients.”