Pre-conference: Bridging health literacy and health data: towards a competency framework to navigate the European Health Data Space  

Tuesday 12 November, 9:00 – 12:30 Lisbon time (followed by network lunch)

Organised by

EUPHA Health literacy and Public health monitoring and reporting sections. Co-organizers: Technical University Munich, Germany, Sciensano, Belgium, WHO Collaborating Centre for Health Literacy


This joint pre-conference of the EUPHA Sections ‘Health Literacy’ and ‘Public Health Monitoring and Reporting’ represents a follow-up event to last year`s very successful joint pre-conference of both Sections, which focused on the recently launched European Health Data Space (EHDS). During the participant-driven group workshops, the ‘health language’ and ‘health terms’ used within the EHDS were critically analysed, evaluated, and adapted to meet citizens’ language and health literacy proficiency levels. The working groups developed a glossary and aimed at making these new terminologies more understandable and more meaningful to citizens and professionals in order to sustain a better uptake and use health data. Drawing on these results, the main goal of this pre-conference is to create recommendations for a competency framework for health care professionals and citizens that they require to visit, navigate, and use EHDS for their personal or professional purposes.

Launched with the aim of providing an information and health data platform for European citizens and health care professionals, EHDS aims to provide reliable and trustworthy health information through high-quality health data. As it was highlighted last year, health data indeed has become a vital pillar for European public health and health care and EHDS aims at unleashing the full potential of health data. We highlighted the key areas of EHDS and how they interact with professional health literacy (of health care professionals) and personal health literacy (of citizens) and introduced linkages to the following EHDS dimensions: 

  • supporting individuals to take control of their own health data
  • supporting the use of health data for better healthcare delivery, better health research, health innovation and health policy-making
  • enabling the European Union to make full use of the potential offered by a safe and secure exchange, use and reuse of health data.

In order to train professionals to provide EHDS services to its fullest to citizens and in order to educate citizens to use EHDS in a competent way utilising its full potential, competency standards and professional capacities are required. While health information and data are in the focus of EHDS, it becomes obvious to put a health literacy lens to the design and implementation of these training and education activities. The content and dimensions must be sensitive to citizen health literacy levels and needs as well as the professional levels and needs.


The aim of the pre-conference is to shed light on the EHDS from a health information management and health literacy perspective in order to develop recommendations for a competency framework for professional capacity trainings and citizen health literacy education. 




Moderator/ Speaker


Opening and welcome

Nienke Schutte, Catherine Jenkins, Orkan Okan (moderators)


Introduction to European Health Data Space (EHDS)

Nienke Schutte, EU HIS unit Sciensano


Introduction to health literacy

Stephan Van Den Broucke, UC Louvain, Belgium


Presenting key findings previous pre-conference

Nienke Schutte, Catherine Jenkins, Orkan Okan




Working groups



Led by international key experts from the field of health data and health literacy

Working in groups, we will focus on specific competencies and capacities for professionals and citizens to inform the recommendations for the competency framework. The starting point will the results created during and after last year's pre-conference. The participants will then formulate in the group a working description, which would allow them to understand it from their own working field.

Working group leaders and facilitators: Hanna Tolonen, Heidi Lysol, Nienke Schutte, Miriam Saso, Marlene Meyer, Cara Krudewig, Lisa Stauch, Pia Rangnow, Sophie Rauschmayr 


Coffee and tea break





The working groups will present their key findings and suggest ways on how to translate the complex terms into simple and easy-to-understand terms, and how this could help to support their health literacy and those of citizens.



Nienke Schutte, Catherine Jenkins, Orkan Okan


The registration fee is EUR 75. Networking lunch and refreshments are included.