On February 8 2022 the MEP Lung Health Group organised a virtual event on “Improving lung health through the future European Health Data Space”, hosted by the Group members Co-Chair MEPs Manuel Pizarro (S&D – Portugal) and Sara Cerdas (S&D – Portugal). Panelists included EU policy makers, digital health experts, healthcare professionals, and patient representatives (Armando Ruiz from EFA, European Federation of Allergy and Airways Diseases, see also below)
This event marked the launch of the European Lung Health Group (ELHG) policy brief on the future European Health Data Space (EHDS).§
The policy brief is available at this link:
ELHG_Policy_Brief_-_European_Health_Data_Space_2022
Key points raised during the event
- The Covid-19 pandemic has accelerated the digitalisation of health
- Digital solutions offer great opportunities for patients, as they put them in control of their data and healthcare, and allow for more insights on prevention and care
- Digital solutions need to be easily accessible from anywhere the patient may find himself
- Digital literacy is a key factor in digital health, patients need to be empowered to ensure that no one is left behind
- The collection and analysis of health data can create concern and distrust about its potential misuse
- A regulatory framework is essential in order to share data safely, ethically and legally
The patient perspective
Armando Ruiz, from EFA patient made three interesting comments:
- Digital solutions are still being designed without consulting patients. Co-creation is the only way forward, patients must be put at the center of care
- Interactivity and interoperability need to be addressed in order for patients to easily access and use their health data, or transfer them between healthcare providers, including when they travel
- The key to the success of the European Health Space is to build trust. Without trust there is no consent and without consent there are no data.
Hilde De Keyser, from Cystic Fibrosis Europe said that all data that is important to patients should be taken into consideration and not just clinical data. Only in this way can we make sure that patient needs are at the center of care.
Footnotes
§ The ELHG is an informal group of patient groups and healthcare professionals, with 179 member associations from across Europe, and its Breathe Vision 2030 outlines the changes that lung patients want to see across awareness, prevention, care, research and the impact of COVID-19. This new policy brief will expand the group’s Breathe Vision 2030 on the topic of digital health.
