Today, citizen-centric health data systems are clearly to the fore. Having citizens at the very heart of healthcare throughout Europe is a phenomenally important goal. “No-one left behind” is therefore a striking mantra. In her keynote speech, Cat Macauley, Chief Design Officer of the Scottish Government (Scotland), an EHTEL member. She reported on exactly how Scotland will achieve getting 60,000 digitally excluded households online by the end of 2021. She explored with the audience how many families and households use multiple gadgets, equipment, and apps. She compared this possession of a plethora of digital devices to the often zero number of devices available to people who are digitally excluded. At the start of the COVID-19 pandemic, for example, some 300,000 people in Scotland were completely offline. Cat’s emphasis was on the practical efforts that can be made not to ignore people whenever health and care initiatives go digital and start to use data in a massive way.
✅ ePoll: Via an EHTEL ePoll, Symposium attendees were inspired to share their own thoughts about what a citizen-centric health data ecosystem means to them. The core response was empowerment. Among other key positives were hope, equity, fairness, inclusiveness, and protection. From a clinical perspective, the ecosystem means personalised medicine and optimised healthcare. From a technical perspective, it means interoperability and the need for good regulation(s).
🗣️ Discussions: Symposium attendees’ concerns were for people who are ‘on the margins’ of the digital world. Participants were keen to add to the Scottish example other good practices from countries such as Germany, Lithuania, Sweden, and from the other devolved nations of the United Kingdom. The conversation opened up from a focus on digital to concerns about citizens’ data literacy.