HIMSS23 Europe: Promoting patient trust in health data sharing

Patient participation is critical in creating the new digital world of healthcare, but citizens often feel fearful and distrustful about the use of their personal data for research and analysis.

A session at the HIMSS23 European Health Conference and Exhibition (7-9 June) in Lisbon will focus on patients’ attitudes towards data sharing and how citizens can be encouraged to embrace the idea of ​​data donation and consent .

Expert speakers will look at how projects such as the European Patients’ Forum (EPF) initiative Data Saves Lives can help to communicate with citizens about health data. It will also touch upon the roles of interoperability and governance in data sharing.

The session will include an overview of C4Yourself – a federal health data space for the reuse of individual controlled health data. The project, which ran from July 2021 to March 2023 and involved a consortium of 15 project partners, aimed to create a federated health data ecosystem that would enable citizens to donate health data for research, policy and innovation.

It will also examine how the integration of cloud-based technology can help lead healthcare if patient communities are adequately connected and risks are addressed pre-emptively.

why it matters

Although data is seen as a golden thread within healthcare, its potential for research and analysis cannot be realized without the consent of patients. The challenge for healthcare leaders lies in building trust and fostering public willingness to allow the sharing of health data for both primary and secondary purposes.

The session ‘Keeping the Trust: Patients and Data’ will be moderated by Petra Wilson, UK Senior Policy Adviser at HIMSS on Friday, 9 June. He will be joined by Birgit Bauer, social media and digital health expert and Project Manager of DataSavesLives, along with Armando Ruiz, Vice President of the European Federation of Allergy and Airway Disease Patients Association (EFA).

Also speaking at the session are Andre Boersma, Researcher of Digital Health at TNO, and Dr Suzanne Waite, Managing Director of The Health Policy Partnership.

larger context

The issue of patients’ trust came to the fore in the UK after 1.5 million people opted out of a plan to share GP medical records with third parties. Following a review of the use of health data for research and analysis by Professor Ben Goldacre, the government announced that the scheme would only continue once they had created a national trusted research environment (TRE) that could securely hold data and can make it accessible. To all legitimate users while minimizing risks.

A previous NHS plan in 2013 to also put GP records into a central database under the care.data program was abandoned in 2016 after privacy complaints.