The challenge: A legacy of data, a need for evolution
The ONKOS database, one of the world’s most valuable clinical registries on sarcomas and rare bone cancers, has been at the core of the ROH’s oncology service and research for decades. Originating in the 1970s, ONKOS has supported clinical care, research publications and service evaluations. However, the system faces several challenges:
1. An outdated data model that can result in data duplication or overwriting.
2. Manual data entry that is time-consuming and resource-intensive.
3. Limited flexibility in adapting to evolving research needs.
4. An imminent transition to a new Electronic Patient Record (EPR) system that will replace ONKOS’s patient management functionalities, raising questions about the registry’s future role.
Matthew Revell, Executive Medical Director and Consultant Orthopaedic Surgeon at ROH, reflected on the challenge:
“Our ONKOS system drives the Oncology Department’s international reputation for research in the field of musculoskeletal sarcomas. [...] The ask was to see if we could design the potential successor to our system and to come at the problem from the basis of integrating existing data systems, adding what we could in terms of value for clinicians. The solution demonstrated after our innovation sprint was a showcase of Ledidi's rapid understanding, not only of our systems, but also the meaning of our clinical data; ability to place in context. The added layer was a surprise too – a deep understanding of the clinician-researchers need to manage ad hoc and short term data collection for individual studies. Neatly integrated into a unified solution.”
With this in mind, Ledidi’s task was to propose a proof of concept for ONKOS 2.0 — a modernised oncology database that could:
1. Support real-time reporting on oncology service outcomes and activity metrics.
2. Strengthen the research capabilities by making data more structured and accessible.
3. Reduce the burden of manual data entry while maintaining accuracy and completeness.
The solution: ONKOS reimagined
The innovation sprint lasted just two months, during which Ledidi worked closely with ROH clinicians, data managers, and leadership teams to scope the project and secure information governance approvals. The team also reviewed published research papers to understand the most critical oncology research questions.
Key elements of Ledidi’s solution included
1. Restructuring the data model
Ledidi reorganised ONKOS from a procedure-level structure to a patient-centered model. Surgical procedures and outcomes were grouped in Series, making it easier to track longitudinal patient data and analyse trends over time
2. Streamlining data capture and entry
New structured data capture forms were introduced to improve how patient-level data is recorded, ensuring consistency, accuracy, and ease of use for clinicians and administrators.
Note: The patient information shown is fictional
3. Real-time analysis and dashboards
Ledidi configured data visualisation dashboards tailored to ROH’s needs, offering insights on:
Diagnosis prevalence and treatment patterns
1. Patient demographics and clinical characteristics.
2. Outcomes analysis, including rates of infection, readmissions, recurrence, reoperations, and survival trends.
3. Real-time subgroup analysis, enabling clinicians to filter by e.g. diagnosis types and other variables for more granular insights.
A model for successful collaboration
The project culminated in a Demo Day at ROH, where five innovation teams presented their solutions. The success of this initiative was a testament to collaboration across multiple stakeholders — including clinical leadership, research teams, data managers, information governance, and finance. The West Midlands Health and Wellbeing Innovation Network played a key role in facilitating the process.
Reflecting on the project, Matthew Revell shared:
“It has been a delight working with the Ledidi team exploring future options for our Oncology Database (ONKOS) and support for Research and Development. The product is clear in its offer – it feels to me like intelligent BI with a light statistical capability. Ideal for clinicians looking at case series for presentations and the first steps to publications. What you don’t know, until you work with Ledidi, is how positive, proactive and efficient they are in their application. I have no hesitation at all in recommending this company to work with, based on our experiences to date.”
This West Midlands Health and Wellbeing Innovation Network (WMHWIN) innovation programme was supported by the West Midlands Health Technology Innovation Accelerator (WMHTIA).