Local residents in Scotland help shape sensitive data access principles

South-East Scotland residents have shared their perspectives to support the development of the DataLoch service as part of a DARE UK Sprint Exemplar Project.

One of nine DARE UK Sprint Exemplar Projects – ‘Overcoming technical and governance barriers to support innovation and interdisciplinary research in trusted research environments (TREs)’, led by the DataLoch team in collaboration with Public Health Scotland – is exploring the use of TREs by researchers from different organisations – for example, those from third- and private-sector organisations. As part of this, the team commissioned Ipsos Scotland to undertake a public consultation with local residents in South-East Scotland.

The aim of the consultation was to inform DataLoch’s governance framework for requests to access health data for research. The first stage involved a survey, with the resultant report demonstrating general support for access by a range of organisations. The second stage involved small, focussed discussion workshops with local residents to identify key principles and red lines for researchers seeking access to health data. These recommendations are now informing the governance framework for DataLoch.

Key findings from the consultation

Participants were generally positive about the potential benefits of health data research. There was a feeling that access to the information contained in health data could help ensure that health care decisions were made based on the best evidence available.
Overall, they felt positively about TREs and how health data was accessed and used for research purposes, but remained concerned about data breaches and the possible consequences of both data breaches and the research in general. Although feeling the current process was overly complex, they recognised the balance needed between protecting patients’ data, and making sure access was possible for research that brought innovation and improvement in health services.
Having learned about and deliberated on the range of different types of potential research requests, participants acknowledged the potential benefits of researchers beyond academics and clinicians accessing health data. The main benefit was that research could ultimately help to improve the diagnoses and treatment of health conditions, which in some cases could mean saving lives.
However, this did not mean there was blanket acceptance of any researcher accessing health data. Some types of researcher, particularly those involving organisations operating outside of the health care field and those operating for profit, raised particular concern.

You can find out more and access the full report on the DataLoch website.