The European Union (EU) has proposed an eHealth regulation that aims to create a European health data space (EHDS), allowing the health data of EU citizens to be available for healthcare and research purposes, including for treatment outside of their home country. However, the idea of sharing health data with the private sector has raised concerns about confidentiality in healthcare. President of the German Medical Association, Klaus Reinhardt, supports the use of health data for research purposes, but emphasized that doctors and patients must receive clear benefits from sharing data to ensure trust and acceptance.
According to a survey by Ipsos Global Trustworthiness Ranking 2022, politicians ranked last in terms of trustworthiness with 12%, while doctors ranked highest at 59%. Reinhardt commented that trust in politicians is low, and that people may have reasons for not wanting to share their health data with the state. The Standing Committee of Doctors of the European Union also expressed concern over possible restrictions on fundamental rights with the use of EHDS. Patient trust is crucial in maintaining the doctor-patient relationship, and doctors have limited time to read through large amounts of data.
Anca Thoma from the European Patients’ Association suggests that AI-based apps could save doctors time and provide them opportunities for more patient interaction. However, platforms such as Google and Facebook already collect significant amounts of health data from their customers, which is seen as more dangerous than “Big Pharma”. The EU is considering regulation of these platforms as aggregated health data is viewed as a public good.
MEP Birgit Sippel (SPD) believes that the EHDS is only driven by industry interest in data, and there are no strong arguments for an opt-out model for electronic patient files. She believes that patients should have the choice to opt-in, and that their rights should not be compromised in the name of data sharing. It is important to ensure that technical measures are in place to safeguard patient privacy and confidentiality, and to earn the trust and acceptance of both doctors and patients before implementing the EHDS.