In February 2020, the European Commission unveiled the European Strategy for data as one of the drivers of the EU digital transition in the next five years.The strategy aims to increase the availability of data and maximize the benefit of data-driven applications.
To achieve this, the Commission put forward a plan for the development of common data spaces across sectors and policy domains, including in the areas of health and the EU Green Deal (environment and sustainability).
Future data for patient empowerment and modernisation of health systems
EFA participated in the public consultation of the Directorate General for Communications, Networks, Content & Technology (DG CONECT), offering the perspective of patients living with allergy and chronic respiratory conditions, such as asthma and chronic obstructive pulmonary disease (COPD).
In our response, we welcome the Commission promise of planning digital tools and applications, typically fed and working thanks to patient data, into tools also advancing patient empowerment and the modernisation of health systems. We draw attention to the great benefits of eHealth and mHealth in the diagnosis, monitoring, management and treatment of chronic diseases.
Health data protection: strong regulatory framework
Finally, we argue for the role of data in personalised medicine, which is highly needed for the timely diagnosis and care for allergy and respiratory diseases. Yet health data are sensitive, and should be collected and processed under strictly defined rules. EFA calls for a strong regulatory framework, especially if these data are informing healthcare decision-making.
Health data governance: integrate the patients
In the view of EFA, the common European health data space will need to be governed, including on patient participation, as well as through a framework of trust and ethical standards. In particular, we expect a European health data space addressing the following aspects:
- Ownership/consent – Patients should remain owners of their data, deciding who should have their data and why. Consent should be clear, uniform and withdrawable.
- Data collection should take place under terms known to patients, who should be able to share only essentially needed data.
- Patients should always have access to their data, as well as the ability to change them.
- Portability/Interoperability of data should be ensured across borders and across different applications, such as Electronic Health Records and electronic prescriptions.
- How their data is used by private and public actors should be clear to patients.
- Being highly personal, health data protection and privacy is safeguarded by the Charter of Fundamental Rights of the EU.
Health data: focus on digital literacy
A common health data space needs a strong focus on digital literacy, as a genuine aspect of patient empowerment. Targeted actions to improve patient education should involve all relevant actors, from healthcare professionals to caregivers. Besides, health data should enable citizen science and a wider use of Real-World Evidence data.
A common European Green Deal data space
In addition to our comments on the future Health Data Space, and due to our important focus on health prevention, EFA considers data economy to be key in achieving EU environmental and climate goals, such as the ambition for climate-neutrality by 2050 and the Zero Air Pollution Plan, which will set crucial objectives impacting allergy and respiratory health.
Data technology can also simplify the collection of information in areas that require continuous measurement, such as air quality and exposure to chemicals. Access to this information is paramount for patients.
You can find the full EFA response to the public consultation here.