The European Patients’ Forum (EPF) and the European Institute for Innovation through Health Data (i~HD) are committed to raising public awareness of the benefits to healthcare from the use of health data. They have set up the Data Saves Lives website as a trustworthy environment for dialogue across Europe about health data, part of the global #DataSavesLives movement.
Since 2014 an increasing number of universities, research organisations, the clinical research industry and charities have been united in their efforts to gain public trust by supporting #DataSavesLives.
Using events, activities, digital media, case studies, testimonials and imagery, #DataSavesLives is a multi-platform campaign that seeks to demonstrate the trustworthy re-use of health data and kick-start a public conversation. #DataSavesLives has been used over 14,000 times in a single year on Twitter alone, with interest and discussions growing.
Having originated at The University of Manchester’s Health eResearch Centre in 2014, #DataSavesLives is creating an online digital library that seeks to raise the public’s awareness of how health data is created, linked and analysed by investigators conducting research, service development and service evaluation.
Existing beyond organisational and geographical boundaries #DataSavesLives has now been adopted by a number of important research networks and stakeholder groups, both past and present. These include the North of England’s Connected Health Cities programme, the UK-wide Farr Institute for Health Informatics Research and Health Data Research UK, the Understanding Patient Data initiative, the University of Western Australia, the University of Michigan, the European Federation for Medical Informatics, the World Health Organisation (WHO), Copenhagen Healthtech Cluster, the European Patients’ Forum (EPF) and European Institute for Innovation through Health Data (i~HD), who have set up this site.
For further information on the origins of #DataSavesLives, see here. A scientific publication about how #Datasaveslives has been used since its instigation, and by whom, is in the pipeline.