BMJ article on the European Health Data Space

19 July, 2022

The European Health Data Space fails to bridge digital divides | The BMJ

This article may be of interest to HIFA members. Proxy Access for disadvantaged populations, including older people, refugees, those on low incomes, those living with chronic conditions, and some ethnic minority communities might be relieved through what is called proxy access - access foy a formal or informal carer (family member, friend, neighbour, community leader etc) The document begins: “Closer engagement with patients and the public is essential

“Over the past 20 years, the European Union (EU) has strengthened its role assisting member states in public health matters through market oriented policies, such as improving cross border healthcare, facilitating common market access for medicines, and regulating tobacco products. "Yet, criticisms of fragmented governance, siloed approaches to policy decisions,12 and a divided EU have emerged. Partially, this relates to member states using different strategies to monitor and contain covid-19.

“On 3 May 2022, the European Commission launched the European Health Data Space (EHDS), designed as the foundation for a European Health Union.3 The aim is to improve care delivery and patients’ lives by empowering all EU citizens to control and use their personal health data in a private and secure environment, removing information barriers and creating a single market for digital health services. Even so, the EHDS might unintentionally disadvantage certain populations, including older people, refugees, those on low incomes, those living with chronic conditions, and some ethnic minority communities.

"Here, we consider critical problems with the current iteration of the EHDS that have the potential to exacerbate existing inequalities if digitally abled people were able to mobilise their health data during healthcare visits, while others without adequate digital literacy or resources could not.4 Such digital disadvantage could adversely affect quality of care, ability to participate in healthcare, and health outcomes.

"The EHDS will allow EU citizens to grant health professionals across the EU access to their personal health data through a digital interface. It will facilitate the use of health data for research, innovation, policy making, and regulatory activities, while maintaining full compliance with the EU’s data protection standards.3 The EHDS will build on the values of civic participation and empowerment that underpin the EU while also tackling problems that currently prohibit the widespread adoption of digital health approaches in mainstream healthcare."

HIFA profile: Richard Fitton is a retired family doctor - GP. Professional interests: Health literacy, patient partnership of trust and implementation of healthcare with professionals, family and public involvement in the prevention of modern lifestyle diseases, patients using access to professional records to overcome confidentiality barriers to care, patients as part of the policing of the use of their patient data

Email address: richardpeterfitton7 AT