Description
Transforming how sensitive health data is managed and shared is an urgent challenge. However, proper adoption of RDM and FAIR practices is blocked by technical and cultural barriers, which need to be investigated and understood to drive widespread culture change.
To explore the barriers to adopting good RDM and FAIR practices in health data and discover health researchers' current practices, knowledge, and understanding of RDM/FAIR, we interviewed researchers in the Centre for Musculoskeletal Research at the University of Manchester.
Nine researchers were interviewed; most had not heard of FAIR. All agreed that RDM and FAIR are important and that motivations outweighed the barriers. Motivations included producing trustworthy, high quality science, maximising data use, and future proofing research. Limitations included limitations in time/resources, knowledge, infrastructure and human support. Unique to sensitive health data is the volume of legal and ethical “red tape”, and the resources needed to navigate this. Four researchers mentioned dropping research ideas and collaborations because of this.
Further research is needed into the cultural barriers to good RDM/FAIR practices among sensitive health data researchers, particularly to investigate whether this is unique to researchers at UoM, and how to overcome barriers and create widespread shifts in practices.
