Engaging the public in enhancing data risk assessment: Insights from the SARA project
In an age dominated by data-driven research and technological advancements, ensuring the accuracy, confidentiality, and ethical use of sensitive information is paramount. The Semi-Automated Risk Assessment of Data Provenance and Clinical Free-Text in Trusted Research Environments (SARA) project is a collaborative effort led by Dr Arlene Casey that involves prominent institutions such as the University of Edinburgh, University of Aberdeen, and Public Health Scotland. The SARA project stands at the forefront of developing tools to enhance risk assessment and monitoring of data for research purposes. SARA is one of the five DARE UK (Data and Analytics Research Environments UK) Phase 1 Driver Projects, and, just like all the others, this project is demonstrating its commitment to involving the public in shaping the data risk assessment process, gathering diverse perspectives, and building public trust.
Understanding the SARA Project
The SARA team has two key objectives. Firstly, to support staff within Trusted Research Environments (TREs) in accurately processing and linking data and creating a single log of data processing. Secondly, to create a risk assessment model for TREs that minimises confidentiality risks within clinical free-text records (e.g., observations, diagnosis, vitals, etc., written by a healthcare professional about a patient’s health status). The project envisions semi-automated processes that can enhance core aspects of risk assessment, making the process more robust and guiding analysts and information governance experts towards areas requiring the most attention. A collaboration of academic institutions and healthcare bodies, SARA’s impact extends beyond health data, potentially influencing the broader administrative data ecosystem.
The Significance of Public Involvement and Engagement (PIE)
Recognising the importance of including public perspectives in matters involving sensitive data, SARA has placed Public Involvement and Engagement (PIE) at its core. The SARA project team built its strategy on the premise that engaging the public is crucial for establishing trust and securing the social licence necessary for operating in the complex sensitive data landscape. SARA’s PIE focus has ensured that perspectives from members of the public have been incorporated from the outset, and in doing so, allowed vital risk assessment and mitigation approaches to be built into the final designs.
Key Steps and Activities in the PIE Process:
- PIE Ethos: The SARA team has integrated PIE as a core element within its development of risk assessment and mitigation approaches. The project team includes members experienced in working with public stakeholders.
- Engagement Methods: SARA has primarily employed deliberative workshops and a survey with a representative sample of Scottish adults, involving key collaborators where needed. Ipsos Scotland, an organisation widely reputed for its expertise in conducting public engagement, has worked closely with the SARA team on workshop content development and session facilitation, as well as the survey design and fieldwork.
- Accessibility and Inclusivity: The SARA project team also collaborated with Ipsos Scotland to make its public involvement and engagement more inclusive and accessible. This collaboration ensured that workshop content and activities were public-friendly and well-understood. The SARA team also made deliberate efforts to accommodate accessibility requirements and scheduled sessions outside standard working hours to foster participation.
- Participant Demographics: SARA aimed for participants with equal gender distribution and broad representation of the Scottish population to secure diverse perspectives and a better sense of views across society.
- Communication and Feedback: Communication, dialogue and feedback with members of the public was maintained throughout the workshop sessions. Participants were provided with opportunities to join SARA-related public panels and provide feedback where relevant.
Reflections
SARA’s PIE efforts have proved successful so far, enabling rich discussions and insights from participants. Although the survey had good representation across demographic groups, for the deliberative workshops there was a specific challenge in meeting recruitment targets for those from the lowest educational group. Key learnings include the need for closer collaboration between subject and engagement specialists, early scoping and inclusion of public perspectives, and considering centralising public involvement in programme-level groups, such as across DARE-funded projects.
Conclusion
The SARA project’s commitment to public involvement and engagement demonstrates a forward-thinking approach to sensitive data research innovation. By actively seeking diverse perspectives and involving the public in shaping risk assessment processes, SARA aims to establish trust, enhance data governance, and drive the development of robust, accurate, and ethical data analysis tools. As the project progresses and its findings are disseminated, the impact of this inclusive approach will reverberate across the broader landscape of data research and governance.
