Informed by public views
Public trust is paramount to health data research. The public must have confidence that their privacy is robustly protected with appropriate restrictions and safeguards, and data are only used where there is clear public benefit. We work together with the public and across disciplinary boundaries to ensure a focus on responsible and ethical use of data and real-world validity.
Snapshot: Public consultation informing governance framework
DataLoch is a unique and secure data service transforming access to routine health and social care data involving nearly 1 million people across Edinburgh and South-East Scotland. Prior to the full DataLoch service launch, the team commissioned Ipsos Scotland to undertake a public consultation of local residents. The first stage involved a survey, with the resultant report demonstrating general support for access to data by a range of organisations. To secure more nuanced input, this was followed up with small, focused discussion workshops to identify key principles and red lines for researchers seeking access to health data. These recommendations are informing the governance framework for DataLoch.
Snapshot: Patient advisors embedded in research
Patients and the public have been a core part of the EAVE II team since November 2020, bridging the gap between the pandemic experiences of people in Scotland and the data we analyse. The Patient Advisory Group have contributed to grant development, analysis design, project steering, analysis interpretation, dissemination and evaluation of EAVE II research. Members of staff attached to the EAVE II project feel that the Group has had a genuine impact on the quality and relevance of their work.