On 26th September 2019, the Digital Society Health & Well-being program line organised the conference “Mind Your Data: privacy and legal issues in E-health”. It was an inspirational and successful afternoon, where we brought together over one hundred participants from a wide range of organisations: universities, medical centres, knowledge institutes, companies and the government. Five speakers from five unique backgrounds (law, e-health, data science, philosophy, clinical research) presented their vision and expertise on privacy and legal issues in e-health.
In a nutshell, Marie-José Bonthuis, external privacy lawyer, explained how privacy principles can be applied in very diverse research practices. Together with the VSNU she is developing a ‘General data protection regulation (GDPR) carwash’ which will facilitate the practical process of what applying GDPR principles to research. The second speaker, Niels Chavannes, professor at Leiden University Medical Centre, general practitioner and the founder of the National eHealth Living Lab (NeLL) focussed on guidelines, eLaw and ethics for eHealth by discussing practical examples. One striking example, was that the ethical committee withdrew its approval of a specific study, because it argued that digital consent would not be in compliance with the new GDPR. However, the CCMO overruled this and stated that digital consent can be compliant with the GDPR when all customary conditions have been met. André Dekker, professor clinical data science, showed how we can learn from clinical data all over the world without running into privacy issues. Andre demonstrated the ‘Personal Health train’ project which transfers analysis models and not data, thus keeping data save as they do not leave the “building”. The fourth speaker, Peter Paul Verbeek addressed the issues in e-health from a philosophical perspective, with a focus on the interaction between human, technology and the world. He also put forward the need to find a balance between keeping data private and the potential benefit to society by making data available for innovative research. Last but not least, the international speaker of the event; Edward Watkins, professor at the University of Exeter shared his experiences in the development of a Mental Health App for Young People (ECoWeB). He addressed the design of the study and issues related to privacy and legal aspect that arose during the development of the app.
After the final presentation, a panel discussion was initiated using questions or statements from the audience as a starting point. Our very own Digital Society program coordinator Silvia de Conca from the Responsible Data Science program line joined the previous speakers in this discussion. The questions were very diverse, ranging from practical questions regarding informed consent and its association with creating bias, age verification, parental consent, to more in-depth questions regarding responsibilities and confidentiality. The topics that were raised exemplify the complexity of the issues that can come up in (the study of) e-health and highlight the need for clear guidelines and continued discussions. Addressing some issues, the VSNU incorporated multiple levels of responsibility in the Code of Conduct for research integrity in the Netherlands, depending on the job and what can be expected of the employee. For each question that was answered multiple new questions were raised – a positive indicator for an interactive conference.
During the lunch and coffee breaks everyone had the opportunity to visit e-health demonstrations and discuss practical solutions to privacy issues in ehealth. The demonstrations were prepared by the E-health forum participants from VicarVision, VU Amsterdam, Maastricht University, Maastro Clinic, Leiden University, Leiden University Medical Center and the University of Twente.
We would like to thank the speakers and all (forum) participants for their active contributions to the event. Thank you for the positive feedback. We really hope everyone has enjoyed the conference as much as we (Digital Society Health & Well-being members) did.
For photos of the conference, click here.
The next event will be the second Digital Society conference to be held on November 26th in Utrecht. The theme of this year is ‘Digital participation and inclusion’, click here for more information and registration. Check our website to stay updated with upcoming events and developments or subscribe to our newsletter to automatically receive this information in your mailbox.