At DataLoch, we want to better understand what members of the public expect from our service. In addition to seeking views on the public benefits of our projects, we also seek public perspectives on how we go about our work.
Public Reference Group
Our Public Reference Group involves residents of Scotland who are interested in the secure use of data to enable health and social care improvements. We currently have over 20 participants forming two parallel panels.
Public Value Assessment Panel
Developed in close collaboration with group members, the Public Value Assessment Panel is a critical part of our application-review process. After approval by a senior NHS representative, applications are reviewed by our Public Value Assessment Panel. They address the critical question: is there sufficient public value in the project for DataLoch to be involved?
If the potential public value is not clear, then reviewers can choose to reject the proposal.
Communications Advisory Panel
Our Communications Advisory Panel helps improve the clarity of our messaging, such as offering a sounding board for news items and being a pivotal part of our periodic website reviews.
Public Consultations
Working with specialist organisations, we have consulted members of the public as part of our plans to expand our governance framework and lay the foundations for enhanced risk-assessment procedures.
Reflecting on our governance approach
As part of refining our governance framework to include a wider pool of possible applicants, our first public consultation helped to identify key principles that would ensure continued transparency and trustworthiness. A core recommendation was the incorporation of public perspectives within our application-review process: an idea that ultimately resulted in our Public Value Assessment Panel.
Survey on access to health data
Workshops to shape our data-access principles
Developing semi-automated tools to enhance risk assessment
In the ever-evolving landscape of health care, data play a pivotal role in transformative discoveries and enhancing patient outcomes. Through our collaborative SARA project, we explored how to better support colleagues involved in preparing data for research. Principally, we concentrated on the possibilities for semi-automated tools, where computing platforms would support human decision-making. One focus was on data processing and linkage, and a second was enhancing support for identifying ALL potential privacy risks in clinical free-text records.
The public consultation for this project – workshops followed by a survey – provided the foundation for ensuring any risks are sensitively addressed. A clear recommendation was that ‘the computer’ would only play a supportive role: the ultimate authority would remain with human decision-makers.