TEHDAS PROJECT

Joint Action Towards the European Health Data Space – TEHDAS

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 Coordinator

The project is coordinated by the Finnish Innovation Fund Sitra

WP 6 Coordinator

Enrique Bernal Delgado, Institute for Health Sciences (IACS) and Malou Munkholm, Central Denmark Region coordinate WP6 ‘Excellence in data quality’

WP 7 Coordinator

Juan González García, Institute for Health Sciences (IACS) coordinate WP 7 ‘Connecting the dots’

Funding

TEHDAS 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:  

www.tehdas.eu

  • WP 6 ‘Excellence in data quality’

    WP 6 Provides solutions for the trustworthy secondary use of health and health care data with a view to promoting the digital transformation of European health systems. Develops guidance on ensuring data quality such as anonymisation of data and handling of data disparity.

    More information: www.tehdas.eu/packages/excellence-in-data-quality/

  • WP 7 ‘Connecting the dots’

    WP 7 Provides options for the technical interoperability of the secondary use of health data in the European Health Data Space. Encourages the participation of future users of the European Health Data Space, such as researchers and policymakers, and of the technical implementers, such as companies and institutions, in co-designing the services.

    More information: www.tehdas.eu/packages/connecting-the-dots/



About ‘ Excellence in data quality ‘

  • Provides solutions for the trustworthy secondary use of health and health care data with a view to promoting the digital transformation of European health systems.
  • Develops guidance on ensuring data quality such as anonymisation of data and handling of data disparity.

More information 



About ‘ Connecting the dots ‘

  • Provides options for the technical interoperability of the secondary use of health data in the European Health Data Space.
  • Encourages the participation of future users of the European Health Data Space, such as researchers and policymakers, and of the technical implementers, such as companies and institutions, in co-designing the services.

More information 



TEHDAS WP 6 and WP 7 RESULTS

All result about the TEHDAS project: www.tehdas.eu/results/

TEHDAS’ proposals for data quality and utility in EHDS26.09.2023 WP 6 Excellence in data quality

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).

More information

Report.pdf

TEHDAS proposals for the implementation of EHDS technical infrastructure04.07.2023 WP 7 Connecting the dots

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.

More information and report

TEHDAS consults stakeholders on EHDS technical infrastructure21.04.2023 WP 7 Connecting the dots

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.

More information and report

TEHDAS’ analysis on EHDS technical infrastructure24.03.2023 WP 7 Connecting the dots

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.

More information and report

TEHDAS assesses data interoperability standards21.12.2022 WP 6 Excellence in data quality

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.

More information
Download the report

TEHDAS consults stakeholders on their expectations for safe use of health data08.06.2022 WP 7 Connecting the dots

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.

More information
Download the report

TEHDAS develops data quality recommendations18.05.2022 WP 6 Excellence in data quality

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.

More information
Download the report

TEHDAS suggests minimum technical services for the European health data space05.04.2022 WP 7 Connecting the dots

TEHDAS has identified the technical services needed for exchanging health data for research and policymaking in Europe.

More information
Download the report

TEHDAS provides recommendations on data interoperability03.02.2022 WP 6 Excellence in data quality

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.

More information
Download the report

TEHDAS proposes European Health Data Space services09.12.2021 WP 7 Connecting the dots

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.

More information
Download the report

TEHDAS proposes ways to regulate data quality in the European Health Data Space11.11.2021 WP 6 Excellence in data quality

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.

More information
Download the report

TEHDAS identifies user journey for cross-border health data sharing04.11.2021 WP 7 Connecting the dots

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.

More information
Download the resport



PARTNERS

Project partners include main partners nominated by national governments and other organisations such as hospitals, research centers and universities.

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