At the MQ meeting on 9th September 2019 (Edinburgh), we hosted a discussion session, where we asked participants how they would envision a National Infrastructure for Mental Health Data Science (referred to as “platform” below). Participants were advised that their collected input would be fed back to the MRC to serve as a starting point for their full consultation on this topic. Key findings ● Researchers are particularly interested in using such a platform themselves and recognise its utility to a large number of other organisations. ● The minimum useful requirement for such a platform is a searchable directory of available data with a note about access procedures. Whereas an ideal platform might contain the actual data. Our participants demonstrated a wide interest in the inclusion of different data types and research areas within such a platform. ● Participants were enthusiastic about the possibilities such a platform might enable, mentioning expansion of research topics and conducting more rigorous research. They felt the platform might enable this by maximizing data quality/usage and facilitating data access. ● Participants recognised the positive impact such a platform could have on people affected by mental illness. Patterns of responses arose around patient engagement, policy shaping, open science, and improved research quality. All these elements could help fight the stigma of mental illness in society. ● With regard to the MRC consultation, our participants recognised the need to consult with a range of organisations, including data donors, ethical boards, privacy panels and relevant charities - with an observed less enthusiastic support for political involvement (which may reflect current political circumstances). ● Our participants raised a number of concerns, which the MRC may wish to address during their consultation phase. These included long-term sustainability, governance, and ethical considerations. On a practical note, questions were raised around prioritization, practicalities on data management, platform operation and relevant training and capacity building. Lastly, the participants illustrated the need to raise public awareness of and involvement in this platform in order to ensure the successful implementation.
|Place of Publication||Edinburgh|
|Publisher||Edinburgh Medical School Publications|
|Number of pages||12|
|Publication status||Published - 9 Sep 2019|
|Event||MQ Data Science Meeting - St Paul's and St George's Church, York Place, Edinburgh, United Kingdom|
Duration: 9 Sep 2019 → …