In May, the European Commission launched a public consultation on the regulation of the new European Health Data Space, as part of the Commission’s priorities for a European Health Union and a Europe Fit for a Digital Age. The consultation focuses on the promotion of quality healthcare with improved access to and exchange of data, clarifying the use of artificial intelligence, and reducing health inequalities.
EFA’s collected input from our members to give feedback to the consultation and from the from the ongoing DIG-IT survey of asthma and COPD patients on digital services This feedback therefore reflects the challenges faced by patients, along with proposals on how this new regulation can tackle them and better yet, improve the persisting gaps in care and support for people with allegies, asthma and COPD.
EFA brought the allergy and respiratory patient perspective to European Commission proposals
EFA welcomes the consultation which offers a great opportunity and long-awaited steps towards patient-centred digitalisation in healthcare, supporting and hopefully filling the gaps inpatient empowerment, to improve quality of life.
Patients with allergies and respiratory diseases can benefit from the digitalisation of healthcare services, such as digital tools to track the level of allergens and air pollution, to stay safe and manage their disease everyday through digital, monitored and two way feedback self-management plan, to access medical records, and attend online consultations with family doctors even when traveling or relocating across the EU.
Treat patients as individuals
EFA supports the digitalisation initiative to improve access to, healthcare for patients, enhance follow up on their condition and enable additional research that responds to patients’ needs. However, EFA urges that digital health should not replace in-person healthcare, and that it cannot leave those behind who cannot or do not know how to become digital. Additionally, while recognising the advantages of digitalisation in disease self-management, EFA believes that the core of the Commission’s proposal should be the protection of patients’ rights through GDPR in a pragmatic and patient centred way and ensuring true informed consent by third party actors (with clear consent in case of commercial use).
Reducing inequalities at the core
EFA calls for concrete guidelines on data monitoring by an EU Body to ensure the highest technical standards of protection, while enabling sharing in a way that patients are in charge and to reduce any inequalities across EU Member States during the implementation of this project.
In our response, EFA stressed the need for the Commission to address every aspect of health and social inequalities by fostering digital literacy and reducing technical administrative burdens for patients to access the proposed tools and platforms.
While EFA agrees with the Commission’s efforts to clarify the increased use of Artificial Intelligence in the healthcare sector, we urge to include measures to prevent replacement or erasure of in-person healthcare services. Our evidence shows that asthma and COPD patients trust their healthcare professionals and consider them as the most reliable source of information. That relationship remains at the core of chronic disease care.
Lastly, EFA proposed a Commission-led evaluation of the current EU Law governing health data to verify the stability of a safe data sharing digital environment for patients and to improve any regulatory gaps.
Next Steps
EFA contributed to the European Patients’ Forum consultation on the European Health Data Space to advocate for the sharing of patient health data for the purposes of diagnosis, disease management and prevention through research initiatives and to increase availability of cross-border healthcare, provided that data is protected in a patient-centric Health Data Space by the European Union.
After gathering all feedback from the relevant stakeholders, the European Commission is expected to adopt the Regulation by the end of 2021. EFA will monitor the developments, and provide substantial input from the patient perspective to ensure that the needs and requests for a safe digital environment for patients are heard and considered.
You can read EFA's response to the consultation here.