Patient involvement is vital in creating the new digital world of healthcare, but often citizens often feel fear and distrust about the use of their personal data for research and analysis.

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

Experts speakers will take a look at how projects like 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 federated health data space for the reuse of individual controlled health data. The project ran from July 2021 till March 2023 and involved a consortium of 15 project partners with the aim of creating 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 to key healthcare if patient communities are adequately engaged and risks pre-emptively addressed. 

WHY IT MATTERS 

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

The session 'Keeping the Trust: Patients and Data' on Friday, 9 June, will be moderated by Petra Wilson, UK senior policy advisor at HIMSS. She will be joined by speakers Birgit Bauer, social media and digital health expert and project manager at DataSavesLives, Armando Ruiz, vice president at the European Federation of Allergy and Airways Diseases Patients' Associations (EFA). 

Also speaking in the session are Andre Boorsma, researcher Digital Health at TNO and Dr Suzanne Wait, managing director of The Health Policy Partnership. 

THE LARGER CONTEXT 

The issue of patient trust was brought to the forefront in the UK when 1.5 million people opted out of a scheme to share GP medical records with third parties. Following a review of into the use of health data for research and analysis by Professor Ben Goldacre, the government announced that the scheme would only continue after they had built a national trusted research environment (TRE) that could hold the data securely and make it accessible to all legitimate users, while mitigating the risks. 

A previous NHS plan in 2013 to put GP records in a central database under the Care.Data programme was also abandoned in 2016 after confidentiality complaints.