To have and to hold: An exploratory qualitative study exploring why research participants with treatment-resistant depression undergoing transcranial magnetic stimulation treatment requested copies of their research brain MRI scans

Purpose: There has been little research providing an in-depth exploration of the reasons behind research participants, particularly in mental health settings, requesting copies of their research data, such as magnetic resonance imaging (MRI) scans. BRIGhTMIND is a large double blind randomised controlled trial using functional and structural magnetic resonance imaging to create personalised targets for transcranial magnetic stimulation delivery, and a number of trial participants requested copies of these scans.

Methods: Seven participants involved in the BRIGhTMIND trial completed semi-structured interviews exploring their reasons behind their request for copies of their MRI scans. The qualitative data was co-analysed between researchers and patient and public involvement and engagement representatives using inductive thematic analysis.

Results: The interviews produced consistent themes concerning curiosity to visualise their MRI scans, and the hope that their participation would result in a better understanding of the nature and future treatment of depression. Concerns around the rights to access their own personal health data emerged as a clear theme as did their own ability to interpret any radiological information.

Discussion: This study provides insight into the reasons why research participants with depression would like to retain copies of their MRI scans and the perceived role that such techniques may have for improving research and neuromodulation treatments in depression. Such first-hand experiential accounts emphasises the importance of listening to participants perspectives and lived experience, in order to improve research and health outcomes. Future research could aim to provide greater verbal and written information for participants, including details about the accessibility to their MRI scans, the difference between research and clinical MRI scans, and educational materials to help with the interpretation of MRI images.