It has been an extraordinary year for us all. The COVID-19 response has demonstrated that having access to health data for vital research is crucial in helping discover treatments that save lives; however, memories fade and there is a risk that this message becomes diluted. If this does occur, this could make it more challenging for researchers to access health data for life-saving research, and could also result in large groups of people not being represented – for example: if they choose to opt out.
Recent articles published on health data poverty demonstrate the harm that limited health data access has on people’s lives. There are also numerous case studies that exhibit the remarkable research discoveries that have occurred as a result of access to health data.
Together, we need to ensure that the speed of discovery, which we have seen powered by data throughout the pandemic, continues for those living with other diseases – from dementia to cancer. Everyone should benefit from these discoveries!
This is a call to action for all who care about evidence-based discoveries that help to save lives – “#DataSavesLives – We all need to be represented!”
Please share this and further examples of health data driven discoveries via social media, in conversations with your friends and work colleagues, and across the community as a whole.
NHS Digital primary care data collection for planning and research
12 May 2021
Today, NHS Digital has published a Data Provision Notice (DPN) to collect primary care data for use in health and care planning and research. The aim is to provide a comprehensive dataset that...
Health data poverty in the digital era
8 March 2021
Professor of Ophthalmology and Director of Our Hub for Eye Health INSIGHT, Prof. Alastair Denniston, alongside Hussein Ibrahim, Xiaoxuan Liu, Nevine Zariffa and Prof Andrew D Morris, recently...