The 2021 European Patients' Forum (EPF) congress was held online over four days between 26 and 29 October, under the banner "Digital transformation of healthcare". The congress tackled the topic of digitalised healthcare over a series of sessions addressing different facets of this complex topic, from new developments in artificial intelligence technologies, to policy advances and the health data space. A leitmotif for the congress was patient involvement and engagement, placing their needs and values at the heart of discussions. The first session of 29 October was moderated by Jessica Pacey, CEO of 67Health, and was focused on patient empowerment and the growing movement of data and digital health literacy.
Birgit Bauer kicked off the session by showcasing the tools and resources that make up the Data Saves Lives toolkit, stemming from an initiative to equip and empower patient communities to engage in discussions on health data use and sharing. Kristine Sorensen, a health literacy expert who advises many national and global organisations, continued by outlining how empowering communities on health data literacy is strongly dependent on gradients such as socioeconomic status, explaining that limited available resources usually mean a lower health status.
The main body of the session was devoted to a panel discussion, involving Nick Schneider (Head of Division on new technologies and data use at the German Federal Ministry of Health), Aleš Bourek (head of the Center for Healthcare Quality at Masaryk University, Brno) Kristine Sorensen and Angela Bradshaw (Project Officer at Alzheimer Europe). These discussions underlined the importance of digital health and health literacy for patient communities, highlighting that without health data literacy it is more challenging to make informed decisions for patients, family members and caregivers. Some challenges were also highlighted, with Nick Schneider stating that providing health data literacy to patients can be difficult due to the regulatory environment which can prohibit patients from accessing data, Aleš Bourek pointed out healthcare professionals should be able to translate information with the community, including health data, to help empower patients.
Closing the session, all speakers and panelists were invited to identify an action that will make a difference to trust in health data sharing. Here, key messages revolved around improving transparency, communication and reducing stigma, identifying these as important enablers for health data literacy in communities.
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