The British Ophthalmological Surveillance Unit

The unit aims to facilitate research for the advancement of knowledge and improvement of the prevention and treatment of these disorders. Further benefits from their work are implications for service planning, allowing ophthalmologists to participate in peer-reviewed research and lessening the burden on reporting doctors of requests for data from numerous sources.

Aims of the project

• To conduct nationwide epidemiological surveillance of rare eye diseases and conditions that cannot be effectively studied at a local level
• To provide a centralised system for data collection, enabling consistent and scalable research across the UK
• To improve understanding, prevention, and treatment of both rare conditions and rare complications of common diseases

HIC's role

The Health Informatics Centre plays a key role in supporting the British Ophthalmological Surveillance Unit national surveillance platform for rare ophthalmic disorders across the UK. HIC provides the secure technical infrastructure, governance framework, and operational support that enables clinicians and researchers to collect and manage surveillance data efficiently and safely.

HIC developed and maintains the bespoke BOSU system, providing ongoing technical support and system administration. The platform supports secure, role-based access for clinicians, researchers, and study teams, alongside automated notifications, audit logging, reporting functionality, and secure data handling processes.

A core part of HIC’s involvement is converting research study requirements into structured online questionnaires tailored to each project. HIC works closely with researchers to develop digital forms and follow-up questionnaires that support consistent, high-quality data collection while minimising the reporting burden on clinicians.

HIC also provides the Trusted Research Environment (TRE), or Safe Haven, where study data can be securely accessed and analysed by approved research teams. The environment supports governance-compliant data management, including separation of identifiable and clinical data, controlled researcher access, anonymisation processes, and secure archival of datasets.

In addition, HIC provides integrated secure messaging functionality within the system, enabling researchers and clinicians to communicate about cases entirely within the platform.

Impact

The programme has a significant impact by supporting research that directly informs clinical guidelines and the risk information communicated to patients, underpinned by HIC’s secure infrastructure, which ensures data is reliable, standardised, and robust. It also contributes to shaping public health policy and legislation, particularly in areas such as injury prevention by providing high-quality national data. 

By enabling nationwide data collection, the programme generates insights into rare conditions that would be impossible to capture locally, with HIC’s centralised system ensuring consistent data capture and access across clinicians. It also helps identify emerging healthcare challenges, such as vision loss due to treatment delays, with secure and timely data access supporting more effective monitoring and response. 

In addition, the programme serves as a valuable training platform for future clinical researchers, particularly trainee ophthalmologists, who benefit from HIC’s controlled environment for safe data access and analysis. Overall, the shift to a digital model has strengthened d ata security and accountability, replacing less secure historical practices with robust, compliant systems.

Conclusion

BOSU remains a unique and valuable national research model enabled by large-scale data collection. While the shift to digital systems with HIC support is essential for modern governance, it has introduced engagement challenges driven by how users interact with email-based reporting. Future success depends on better aligning the system with user behaviour, with HIC’s infrastructure remaining key to ensuring trust, compliance, and scalability.

For any enquiries, please contact [email protected]