On 4 June 2020, the Data Saves Lives (DSL) initiative held its first “tweet chat” on how patient groups can best communicate about health data during the COVID-19 pandemic and beyond. Nearly 200 posts using the event hashtag #DSLChat drove the discussion around three central themes – public understanding of health data, examples of patient-centred health data activities, and initiatives to support better communication of responsible health data sharing. COVID-19 was seen to have played a key role in accelerating public awareness of health data and ongoing awareness raising activities were identified as important to advocate for responsible health data use and public involvement.
The event was hosted live online with four expert panellists - the Dutch Patient Federation; the International Niemann-Pick Disease Registry; Birgit Bauer, Patient Expert and Multiple Sclerosis advocate and Angela Bradshaw, Project Officer, Alzheimer Europe. The panellists answered questions submitted via direct tweets using the hashtag #DSLChat. Missed the chat? You can read the full discussion as it happened, at: bit.ly/30iBCjM
Data Saves Lives is a multi-stakeholder initiative which aims to promote greater awareness of how health data can be used in trustworthy ways to improve health and care, and establishing a trusted environment for dialogue about responsible use and good practices across Europe. You can find out more about the Data Saves Lives initiative on the website at https://datasaveslives.eu/, and stay up to date with the latest activities, tweet chats and webinars via the twitter: https://twitter.com/DataSaves_Lives