On 8 February 2022, EHTEL’s Secretary General, Marc Lange had the opportunity to contribute to a discussion organised by the MEP Lung Health Group steering committee. Entitled “Improving lung health through the future European Health Data Space”, in its hour of discussion, the event covered a wide range of opinions on what the European Health Data Space can bring to Europeans. Clearly, in view of two years of COVID-19 developments, having a focus on data about respiratory conditions has come to the fore.
Breathe Vision for 2030 is an informal, collective initiative of European level patient groups and healthcare professionals. It was formed with the goal to empower patients with lung diseases through better care, increased patient participation, and improved prevention around lung disease. It also recognises respiratory health as a priority for the European Union.
The collective had a digital launch a year ago on 27 January 2021 hosted by the European Parliament Lung Health Group.
The European Health Data Space in relation to respiratory conditions
Overall, the European Lung Health Group calls for a European Health Data Space that responds to these patients’ and healthcare professionals’ expectations:
- to facilitate virtual and in-person care for respiratory disease
- to increase access to quality care and information
- to function with transparency and fosters participation
- to enable effective research on respiratory disease
An intensive hour of discussions on 8 February 2022
On 8 February 2022, a BreatheVision discussion event was co-hosted by two members of the European Parliament, MEP Manuel Pizarro and MEP Sara Cerdas, who are both in the Progressive Alliance of Socialists and Democrats (S&D) and from Portugal.
The five invited panellists discussed:
- Opportunities and challenges of the future of the European Health Data Space for lung health prevention and care.
- Digital health technology to serve respiratory outcomes – is a change in paradigm under way?
- Digitalisation and disease self-management – what role for patients?
The messages of EHTEL Secretary-General, Marc Lange, included:
- The European Health Data Space is more than just a vision, it can become a reality.
- In terms of a European Health Data Space paradigm shift, there needs to be an increased focus on:
- Prevention
- A budget for prevention.
- A focus on what policy-makers (and not just researchers) can get out of the data space.
- In terms of digital literacy/digital health literacy, a good example of how to handle increased access to digital is the work of the Scottish Government. See Cat Macauley’s EHTEL 2021 Symposium keynote speech.
Let’s all look out for upcoming announcements, and what happens next on the European Health Data Space!
To read more about EHTEL members’ opinions on the data space visit this page.
To find out more:
- See the BreatheVision’s published briefing located at: Policy briefing: Improving lung health through the future European Health Data Space.
- See the 8 February 2022 event’s video one-hour recording, on the European Lung Health Group YouTube channel.
- Read the full event report.