Pre-conference: A guideline to the European Health Data Space language based on health literacy principles

Wednesday 8 November, 9:00 – 12:30 Dublin time (followed by network lunch)


Organised by:

EUPHA Health literacy and Public health monitoring and reporting sections. Co-organisers: Technical University Munich (Germany); Sciensano (Belgium); WHO Infodemic Management, World Health Organization

Introduction

Creating reliable and trustworthy health information requires high quality health data, making health data indispensable for better healthcare to citizens, strong and resilient health systems, better-equipped health professionals, and a well thought through EU response concerning digitalisation and digital transformation of European healthcare. Health data has become an important pillar in European public health and medicine. Unleashing the full potential of health data requires a systematic approach from EU health policy and decision-makers, supported by research and practice in order to capture people and professionals’ everyday needs and realities. On 3 May 2022, the European Commission has launched the European Health Data Space (EHDS), which will have an impact on data holders, handlers, and users across Europe and beyond. The EU describes EHDS as a `central building block of a strong European Health Union` with which the EU aims to achieve a quantum leap concerning delivery of healthcare provision and access, expanding the scope specifically to also cover digital health services and products. The latter are becoming central cornerstones of 21st century healthcare and public health and need particular attention. Designed as a health specific ecosystem, EHDS comprises a set of rules, common standards and practices, infrastructures and a governance framework to address following key areas of relevance:

  • 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.

While the overall goal of EHDS is harnessing the power of health data for people, patients, and health innovation, EU considers trust to be a fundamental enabler, which will decide whether citizens and professionals will use EHDS, and ultimately determine success of EHDS. Therefore, EHDS ensures full compliance with high data protection standards of the EU, providing a trustworthy setting for processing of health data and secure health data access. In this context, EHDS enables (1) primary and (2) secondary use of health data:

  1. Primary use of health data comprises empowering individuals through increased digital access to and control of their electronic personal health data and support to their free movement at national level and EU-wide.
  2. Secondary use of health data aims at providing an efficient, consistent, and trustworthy framework enabling the use of health data for research, innovation, policy-making, and regulatory activities.

Use and management of health information and data, health empowerment, healthcare access and use, trust in health information, and data science are core public health issues that are being addressed by health literacy. Health literacy is still a relatively new concept in science and in particular in European public health. Health literacy enables people to access, understand, appraise, and use information in ways which promote and maintain good health and wellbeing, better uptake of health care services, and increased engagement with health data and statistics. The concept goes beyond personal competencies and the individual and has to be understood context-specific and relational, meaning that systemic complexities, structures, and demands need addressing as well. This separates health literacy into two linked divisions, namely personal health literacy, aiming at agency and behaviour change, and organizational health literacy, aiming at structures and social change. In terms of health equity, such approach makes health literacy almost a unique tool and intervention approach to address the wider environment and the various determinants of health. In context of EHDS, this makes sense because EHDS requires not only individuals (lay people and common citizens) to be and act health literate but professional (health data experts, health professionals, health decision makers) and systems (healthcare organizations, health data systems, health policy institutions) to be health-literate as well. Altogether, this makes health literacy the perfect tool to link with recent developments and requirements of health data and EHDS.

In context of EHDS, the design, structure, architecture, and content of health data must respond sensitive to health literacy principles, making those aspects of EHDS easy-to-understand, easy-to-access, and easy-to-use. At the same time, there is need for EU-wide investment in promoting health literacy of citizens, fostering their competencies, and eventually their attitudes and trust to access and use EHDS. For example, EHDS introduces various new concepts that are critical and must be understood by citizens and professionals alike, among which are, e.g.: Health Data Access Bodies, Metadata Catalogue, Secure Processing Environments. People need to understand these terms, their meaning, and implication for their health and everyday lives. It is also important to ensure that professionals can make sense of these new concepts. Making these new terminologies understandable and meaningful to citizens and professionals is of high relevance for the success of EHDS and citizens’ uptake and use health data.

Objectives

The aim of the pre-conference is to increase access, understand, appraise, and use of the terminology used in the context of the European Health Data Space and more specifically in its upcoming EU regulation. By taking a health literacy lense, this preconference will provide a guidance to what this means for public health professionals and how to translate this for the concern of citizens. The goals of the inherent activities are:

  • to bring awareness to the changing environment due to digital transformation and the change in concepts this has triggered;
  • to bring some concepts to the table that are in the EHDS regulation which will need to be implemented;
  • to form a bridge between citizens and researchers;
  • provide practical recommendations to professionals on how to improve the health literacy of citizens.

Programme

The preconference programme can be downloaded here.

Registration

The registration fee is € 75 which includes networking lunch and refreshments.