The cross-border sharing of health data has so far been project-based and there are no legal bases or common practices for the secondary use of health data in Europe. A lack of clarity and differing interpretations of the General Data Protection Regulation (GDPR) means that health data is being underused in research and decision-making.
The primary use of health data is the use of health information, such as patient records, to treat a person. The secondary use of health data means using health data for purposes other than the primary reason for which they were originally collected. The secondary use can be, for example, research, decision-making, development and innovation, and education.
The benefits of the secondary use of health data include providing better healthcare services and personalised care for people, and thereby saving lives, increased business opportunities for companies and cost savings for societies.
The primary use of health data is the use of health information, such as patient records, to treat a person. The secondary use of health data means using health data for purposes other than the primary reason for which they were originally collected. The secondary use can be, for example, research, decision-making, development and innovation, and education.
The benefits of the secondary use of health data include providing better healthcare services and personalised care for people, and thereby saving lives, increased business opportunities for companies and cost savings for societies.
A lack of clarity and differing interpretations of the General Data Protection Regulation (GDPR) means that health data is being underused in research and decision-making.
Project CoordinatorThe project is coordinated by the Finnish Innovation Fund Sitra
WP 6 CoordinatorEnrique Bernal Delgado, Institute for Health Sciences (IACS) and Malou Munkholm, Central Denmark Region coordinate WP6 ‘Excellence in data quality’
WP 7 CoordinatorJuan González García, Institute for Health Sciences (IACS) coordinate WP 7 ‘Connecting the dots’
FundingTEHDAS is funded by the Health Programme of the European Union and the European countries involved.
The project started on 1 February 2021 and runs until 1 August 2023
More information: All result about the TEHDAS project: www.tehdas.eu/results/
Data quality is essential for reliable and fit-for-purpose data. TEHDAS has developed a framework to identify the main elements of data quality and utility in the European health data space (EHDS).
A report by the joint action TEHDAS analyses different technical options to facilitate the secondary use of health data in the EU and provides member states with tools to support the implementation of the EHDS. The report provides recommendations on different aspects of the technical infrastructure including data permit services, data integration services and data access.
A report by the joint action Towards the European Health Data Space (TEHDAS) presents a summary of stakeholders’ views obtained at a series of workshops on the technical infrastructure and services of the European health data space (EHDS). TEHDAS has identified several important elements to support the implementation of EHDS.
The report of the joint action Towards the European Health Data Space (TEHDAS) examines the technical requirements described in the European Commission’s proposal on the European health data space (EHDS).
Report on architecture and infrastructure options to support EHDS services for secondary use of data.
Within the European health data space health data will be accessed and analysed across borders. TEHDAS has evaluated data interoperability standards that ensure the data gathered in Europe can be reliably used for research, policymaking and innovation.
The European health data space (EHDS) should facilitate the efficient use of health data for secondary use while ensuring high-level protection of personal data. TEHDAS conducted series of workshops with stakeholders to find out about their expectations for safe data transfer and analysis.
Data quality is a prerequisite for the reliable secondary use of data in research, regulation and policymaking. TEHDAS has developed recommendations for ensuring data quality.
TEHDAS has identified the technical services needed for exchanging health data for research and policymaking in Europe.
Health data is gathered in different ways across Europe. TEHDAS has identified standards that aim to ensure such data can be used across borders for research and decision-making.
Building the European Health Data Space requires policy proposals on data governance for instance plus practical guidelines for using data for secondary purposes, including how to ensure data security. TEHDAS has now described specific technical services that will support the previously identified EHDS user journey, enabling the secondary use of health data.
Data quality is essential to ensuring that data is reliable and is fit for purpose. European regulation is needed to harmonise how data holders are audited, data is processed and meta data published in the European Health Data Space.
Health data offers significant opportunities for research and decision making. Currently, it is underused compared to the potential that exists, especially in the European cross-border setting. To facilitate the debate about how health data could be used more efficiently, we have identified seven phases in the data lifecycle, from finding the right data to publishing the results of its use.
Project partners include main partners nominated by national governments and other organisations such as hospitals, research centers and universities.
List of TEHDAS´s partners
WP 6 TEHDAS Leader
Lead:
The Institute for Health Sciences in Aragon (Spain), Central Denmark Region (Denmark)
Contact: Enrique Bernal Delgado ebernal.iacs@aragon.es, Malou Munkholm Malou.Munkholm@ru.rm.dk
WP 7 TEHDAS Leader
Lead:
The Institute for Health Sciences in Aragon (Spain)
Contact: tehdas@iacs.es
Edificio CIBA
Avda. San Juan Bosco, 13
50009 Zaragoza
976 715 483
atlasvpm.iacs@aragon.es
cienciadedatosysalud.iacs@aragon.es
Atlas VPM, coordinated by IACS, is recognized by the Spanish Ministry of Health and Social Services and Equality as a privileged source (“Registro de Utilidad”) for the National Health System.
