Patients’ experience and opinion of data-intensive biomedical research

In this talk I present a socioempirical qualitative research done in a German hospital with cancer patients involved in clinical trials and biobanking. The study focuses on patients’ opinions about data sharing, data protection and controlling their data over time – i.e. the dynamic consent approach. The analysis of semi-structured questionnaires and the in-depth interviews show a clear need to actively engage patients in data handling, firstly to address their mistrust in and fear of the biomedical system and data protection policies as devices of social control and allocation of individual responsibilities. The major concerns patients expressed about the possibility to be actively engaged on handling of their data regarded the impossibility to develop a clear communication between them and the healthcare system – i.e. they mainly referred to their inability to understand the technical language used in scientific communication (informed consent sheets). Then I will contextualise the empirical results within the broader debate on data-intensive biomedical research to stress some weaknesses of the public deficit model.

Dr. Flavio D’Abramo is Marie Curie Fellow at the Department of Education and Psychology at the Freie Universität Berlin, Focus Area DynAge.