In the ever-evolving landscape of health care, data plays a pivotal role in transformative discoveries and enhancing patient outcomes. However, the journey to harness the full potential of health data is not without its challenges. Current processes – often ad-hoc and manual – hinder the seamless extraction, linkage, and safeguarding of complex data, limiting healthcare innovation.
The SARA project – a collaboration of academic partners and Scottish Trusted Research Environments (TREs) led by Arlene Casey of DataLoch and funded by UK Research and Innovation as part of the DARE UK programme – sought to address these challenges head-on.
We focussed on the development of new approaches and semi-automated tools to enhance risk assessment at the data-access stage in two critical areas: data provenance (i.e. data ingestion, processing, and linking) and privacy risk assessment for clinical free-text.
Access the SARA project reports and outputs
Elevating Trustworthiness through Data Provenance
Our project aimed to enhance the landscape of health data by improving the trustworthiness of data provenance.
By developing semi-automated tools, we sought to ensure compliance for research purposes, while fostering more efficient and reliable health data access. The implementation of an open-source framework for data provenance tracing within TREs marks a significant stride, offering transparency and quality assurance at every step of the data production workflow.
Mitigating Privacy Risks in Clinical Free-Text Records
Clinical free-text records (such as hospital discharge summaries) hold sensitive information, our project delved into understanding and assessing privacy risks. Our focus was on minimising the risk of identifiable information, ensuring that patient records are handled with the utmost care.
In particular, we focussed on indirect privacy risks (such as description of the area where an accident took place that is unique), a previously overlooked area. The outcome — a detailed approach to exploring and understanding these types of privacy risks in clinical free-text, accompanied by a visualisation dashboard — provides a valuable resource applicable not only to our project, but to all future work within TREs.
The Heart of Our Endeavour: Public Involvement and Engagement
At the core of the SARA project was a commitment to inclusivity through Public Involvement and Engagement. Our collaborative efforts ensured that risks were sensitively addressed, public perspectives were interwoven into our outcomes, and our methods remained transparent and comprehensible.
Through our public consultation – involving workshops and a Scotland-wide survey – there was a clear message that for members of the public to have confidence in our improved processes, the preservation of human decision-making was vital.
According to the specific situation, ‘the computer’ would have a greater or lesser role to play, but ultimately, TRE staff would have the final authority on what happens, especially where a nuanced and expert perspective would be required. Our comprehensive report stands testament to the success of embedding public views into the design of our tools, creating a dynamic and user-friendly approach to both data provenance and privacy risk management.
Access our SARA public consultation report
Unlocking the Future of Health Care Data
The SARA project culminated in methods and tools that extends its benefits to health data providers across the UK, addressing potential public concerns and significantly enhancing data audit and access processes. Our novel methods pave the way for improved consistency between TRE organisations and greater data accessibility for research that was previously impossible.
As we reflect on the accomplishments of the SARA project, we envision a future where improved data accessibility leads to even more ground-breaking health care innovations.
Acknowledgement
This work was funded by UK Research and Innovation [grant number: MC_PC_23005] as part of Phase 1 of the DARE UK (Data and Analytics Research Environments UK) programme, delivered in partnership with Health Data Research UK (HDR UK) and Administrative Data Research UK (ADR UK).
