The Simulacrum was developed by Health Data Insight CiC (HDI) in partnership with AstraZeneca (AZ) (Simulacrum v1 and v2) and IQVIA (Simulacrum v1).
HDI have been responsible for generating and evaluating the synthetic database, while AZ and IQVIA have guided the development by providing data science, oncology and technology expertise. Additionally, AZ and IQVIA have helped with testing the Simulacrum to ensure it meets researcher’s needs.
The development of the Simulacrum has also been supported by the National Disease Registration Service (NDRS), who hold the real cancer registration data on which the Simulacrum is based, specifically the National Cancer Registration and Analysis Service (NCRAS) within NDRS, who have expertise in analysis of the data.
Approvals for the release of the synthetic data were given by Public Health England’s Office for Data Release and more recently also approved by the NDRS Caldicott Guardian and NHS England Statistical Governance Board.
Success of a large collaborative project
The Simulacrum has been a large collaborative project that could not have been achieved without an outstanding team of people across multiple organisations. We want to acknowledge both our core contributors, who led and shaped the development of the Simulacrum, and our supporting contributors, who set the groundwork for the project and provided invaluable support, advice and ideas throughout.
Core contributors: Betina Blak, Ismini Chatzitheofilou, Cong Chen, Paul Clarke, Lora Frayling, Ruben Hermans, Ketan Patel, Brian Shand and Sally Vernon.
Supporting contributors: Victor Barzey, Amanda Culley, Pesh Doubleday, Lucy Elliss-Brookes, Cathy Emmas, Rosemarie Gant, Tim Gentry, Rob Heathcote, Luke Hounsome, Robert Kyffin, Yoryos Lyratzopoulos, Tariq Malik, Sean McPhail, Tamsin Morris, Sophie Morris, Sophie Newbound, Lizz Paley, Josh Pencheon, Max Prangnell, Jem Rashbass, Adam Reich, Una Rigney, Andy Shaw, Pete Stephens, Miguel Torres, Michael Wallington, Matt Williams and Kim Whittlestone.
We would also like to thank all our colleagues in NHS England (and formerly Public Health England and NHS Digital), Academic and Industry Partners who have provided guidance and expertise in the development of the Simulacrum.
Although only anonymous data has been used to produce the Simulacrum, we are very grateful to all the patients who support of the cancer registration services in England.
About the National Disease Registration Service (NDRS)
As an NHS organisation, the National Disease Registration Service (NDRS) collects patient data on cancer, congenital anomalies and rare diseases, and provides expert, timely analysis to support clinical teams, academics, charities and policy makers to help plan and improve treatments and healthcare in England.
NDRS is made up of two disease registers: the National Cancer Registration and Analysis Service (NCRAS) and the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS).
To learn more, please visit: https://digital.nhs.uk/ndrs
About the National Cancer Registration and Analysis Service (NCRAS)
The National Cancer Registration and Analysis Service (NCRAS) within the NDRS, is a division of NHS England (formerly of NHS Digital and Public Health England). NCRAS collects data and generates evidence to support cancer prevention and control efforts, including driving improvements in standards of cancer care and clinical outcomes. It chiefly achieves this by continually improving the cancer data that are collected and using it for analysis, publication and research across the patient pathway.
To learn more, please visit: https://digital.nhs.uk/ndrs/about/ncras
Health Data Insight (HDI) CIC is a social enterprise that has been created to develop technical solutions that deliver benefits to patients, the NHS and public.
Our aim is to:
- create value for public sector organisations by finding new knowledge from both existing and new sources of information;
- provide a data management and linkage service that allows partners to access information in safe-havens that guarantee the privacy of each individual patient;
- create visual, internet-based information services and applications that can be easily accessed, used and understood;
- supply organisations with information and services that they can use to understand and help improve their services;
- deliver information to patients in accessible ways to help them improve the ways they choose, access and use services and understand their clinical condition and care.
Our strategic objectives are aligned to NHS and wider government policy to improve transparency and access to data, encourage self-management, enable choice and foster the use of social enterprises to deliver public services.
To learn more, please visit: https://healthdatainsight.org.uk/
AstraZeneca (AZ) is a global, science-led biopharmaceutical company that focuses on the discovery, development and commercialisation of prescription medicines, primarily for the treatment of diseases in three therapy areas – Respiratory, Cardiovascular & Metabolic Diseases, and Oncology. The Company is also selectively active in Neuroscience and Autoimmunity. AstraZeneca operates in over 100 countries and its innovative medicines are used by millions of patients worldwide.
To learn more, please visit: www.astrazeneca.com
IQVIA is a leading integrated information and technology-enabled healthcare service provider worldwide, dedicated to helping its clients improve their clinical, scientific and commercial results. Formed through the merger of Quintiles and IMS Health, IQVIA’s approximately 50,000 employees conduct operations in more than 100 countries. Companies seeking to improve real-world patient outcomes and enhanced clinical trial outsourcing through treatment innovations, care provision and access can leverage IQVIA’s broad range of healthcare information, technology and service solutions to drive new insights and approaches. IQVIA provides solutions that span clinical to commercial bringing clients a unique opportunity to realize the full potential of innovations and advance healthcare outcomes.
As a global leader in protecting individual patient privacy, IQVIA uses healthcare data to deliver critical, real-world disease and treatment insights. Through a wide variety of privacy-enhancing technologies and safeguards, IQVIA protects individual privacy while managing information to drive healthcare forward. These insights and execution capabilities help biotech, medical device, and pharmaceutical companies, medical researchers, government agencies, payers and other healthcare stakeholders in the development and approval of new therapies, identify unmet treatment needs and understand the safety, effectiveness and value of pharmaceutical products in improving overall health outcomes.
To learn more, please visit: https://www.iqvia.com/