Securing funding for a modernised data estate at the National Amyloidosis Centre
| Outcomes at a glance |
|---|
| • NAC leadership secured funding to build a modern data estate from national sources and local initiatives dedicated to amyloidosis research and advancement |
| • System designed to support future use cases including clinical trials and advanced analytics, with funding secured for implementation |
| • Practical, repeatable approach to data modernisation established, applicable across the Royal Free and the wider NHS |
The challenge
The National Amyloidosis Centre (NAC) at Royal Free London is the UK’s only highly specialised centre dedicated to the diagnosis, tracking, and research of amyloidosis. Funded by national sources and local initiatives dedicated to amyloidosis research and advancement, it serves as one of the world’s primary clinical and diagnostic hubs for both acquired and hereditary forms of this rare disease.
For patients across England, the NAC in London is currently the primary destination for advanced amyloidosis treatment. The centre’s data infrastructure had not kept pace with clinical demand. NAC’s data estate centres on a database developed over two decades, supporting a patient administration system built on legacy software. Although both have been adapted and extended over time, they now face significant limitations in flexibility, scalability, and data quality, with no capability to support modern business intelligence or advanced analytics.
The absence of modern data infrastructure limits what the NAC can do for patients and the wider NHS. Clinicians running clinical trials, researchers analysing outcomes, and staff managing patient administration are all working with tools that constrain rather than support their work. The goal was a strategic blueprint for a unified, modern data platform: a single source of truth that would underpin data-driven decision-making across the NAC and support better care, research, and operational efficiency.
Our approach
This project built on a year of collaboration between TPHC and NAC leadership, including previous database development and discovery work for the national amyloidosis network. TPHC’s data and analytics team was commissioned to carry out a detailed technical discovery, engaging key staff and stakeholders, and exploring future needs, information governance requirements, costs, and the practicality of modernising the system.
We developed a stakeholder engagement plan and identified 17 key people from the NAC and Royal Free digital teams. Using Key Lines of Enquiry to structure the interviews, we captured a comprehensive picture of how the existing data estate works, where it falls short, and what a future system needs to deliver. From this, we produced a detailed current-state report covering both the user interface and underlying database architecture.
We then developed a future-state report setting out a clear vision and target design for a modernised data system. Our recommendations covered three areas: moving patient administration into the Trust’s electronic patient record system; building a central data platform capable of scaling to support additional rare disease data in future; and creating a new user interface designed around the needs of clinicians and researchers, including support for clinical trials and advanced analytics.
Data governance was embedded throughout the work. Pseudonymisation protocols were defined to ensure that clinical trial data remains free from bias related to protected characteristics, and the recommendations were designed to align with the Trust’s information governance practices and Digital and Technology Advisory Group (DTAG) standards from the outset.
The impact
Based on our recommendations, the NAC has secured funding from national sources and local initiatives dedicated to amyloidosis research and advancement to build a modern data estate. The build will proceed subject to further approvals from the Digital and Technology Advisory Group and the innovation committee of the Trust.
Once implemented, the planned improvements will streamline patient administration, enhance data quality, and provide clinicians and researchers with better tools to support diagnosis, treatment, and clinical trials. This will enable faster, more reliable decision-making and unlock advanced analytics to support both clinical care and research. Patients across England will benefit from improved care that is better coordinated with their local hospitals, reducing the need to travel to London for consultations that can be conducted virtually through a modernised data estate.
The work also established a practical, repeatable approach to data modernisation that can be applied across the Royal Free and the wider NHS, creating a foundation for future innovation in rare disease services and beyond.
What our clients say
“The review was very comprehensive, and the team was very professional and helpful. Also, their work is very reassuring.”
Ramon Lamarca, Assistant General Manager, Rare Diseases, Royal Free London NHS Foundation Trust
“TPHC has a very good understanding of the digital and data needs of NHS organisations and provides a personalised consulting service with proficient and professional reporting and engagement through the projects.”
“Our experience working with TPHC on digital and data infrastructure for the National Amyloidosis Centre has been extremely positive. Their expertise, professionalism, and knowledge of existing RFL IT infrastructure have been invaluable in supporting our work.”
Professor Julian Gillmore, Head of Centre for Amyloidosis, Royal Free London NHS Foundation Trust
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