On 11 October, EFA participated in the Towards European Health Data Space (TEHDAS) workshop on citizen engagement in the European Health Data Space (EHDS). TEHDAS is a Joint Action funded by the EU and gathering several Member States that wish to advance health data sharing in Europe. Their work is of crucial importance for allergy, asthma and chronic obstructive pulmonary disease (COPD) patients as they are reflecting on the operationalisation of the whole setup progressing to a digital healthcare system that, hopefully, will work for patients.
The workshop was designed to discuss citizens’ role in health data sharing and use for secondary purposes, such as research, innovation and policymaking. TEHDAS presented the final results of the public consultation, as well as input gathered via national workshops held in Belgium, France and the UK. EFA had given input to the TEHDAS public consultation together with the European Lung Health Group (ELHG).
Conclusions from the workshop
After fruitful discussions on how citizens see the EHDS framework work in practice and how it can best serve citizens, through examining the benefits of a European health data space five different challenge areas were identified.
- Stakeholders involved in digital health data are very diverse and that requires flexible engagement to best address the needs of all. Concerns were raised regarding private actors, especially private companies and their use of health data. Participants agreed that transparency is indispensable, and participants discussed the for various opt-outs on individual health data to the EHDS framework.
- Effective implementation of the EHDS will require that digital health literacy is ensured at all levels, with the provision of the necessary tools.
- Reuse of data raised concerns regarding the ethical framework on the data use for EHDS and it is a topic that will require further alignment.
Throughout the workshop, EFA underlined the important role of patients’ associations in the governance of the EHDS, to convey transparency and address issues arising. For EFA, patient representatives should be included at the highest EU governance level, as they bring a unique perspective and can retrieve knowledge from the national level to ensure that differences between the Member States are addresses.
Following the workshop, TEHDAS is currently drafting its recommendations to the European Commission on the European Health Data Space. The recommendations are envisioned to be sent to the Commission in January 2023.
EFA is member of the TEHDAS Stakeholder Forum since its creation.