RADAR-AD members hold ethics interviews with patients and carers from the PAB

“It is crucial for us to analyse at an early stage what emerging ethical and social concerns raise from RADAR-AD research and address them throughout the project.” – Dr Federica Lucivero on behalf of the RADAR-AD consortium

Federica Lucivero and Sébastien Libert from University of Oxford have been conducting interviews on ethical and social perspectives towards the research done in RADAR-AD. So far they have interviewed 11 people from the Patient Advisory Board (PAB) for RADAR-AD that includes patients and their carers. Through their interviews, Federica and Sébastien seek to explore the ethical and social issues emerging from the use and research of Remote Measuring Technologies (RMTs) for Alzheimer’s disease.

The interviews took place on 18th – 20th February in Brussels , in the context of the parallel meetings of RADAR-AD’s PAB and the European Working Group of People with Dementia. Patients and carers were asked about their motivations, hopes and concerns in relation to the research done in RADAR-AD. They shared their opinions on privacy issues when it comes to obtaining data through tracking devices. They expressed ideas on how to best accommodate their needs and resolve their problems with tracking, thereby addressing critical issues within the RADAR-AD study.

Example questions included “How would you feel about your daily functions been tracked?” or “Are there specific aspects of your lives that you would feel uncomfortable if they were tracked?”. Concerning the involvement of private companies in the acquisition and sharing of data which will be obtained in the project, patients and carers shared their ideas on what trust means, expressed their concerns on the collection of data and talked about issues related to profit.

The next steps for Federica and Sébastien are to organise several more interviews in the UK and Ireland. Once they conduct all their interviews, they will analyse the data gathered through them and write their findings in a report which they will submit to the RADAR-AD consortium.