The idea came from a conversation over coffee at Store Street Espresso in late 2014 when Matt Williams suggested to Jem Rashbass and Hilary Wilderspin that it would be useful to have a publicly available version of the data model of the cancer dataset held by Public Health England populated by junk data. His suggestion was that a publicly available model would allow users to write queries, that following appropriate approvals, could then be tested against the real data held by PHE. Over time users would contribute to a communal code repository.
The Simulacrum was then developed by Health Data Insight (HDI) CiC in partnership with AstraZeneca (AZ) and IQVIA. HDI have been responsible for building the synthetic database, while AZ and IQVIA have guided the development by providing data science, oncology and technology expertise. Additionally, AZ and IQVIA have been responsible for testing the Simulacrum to ensure it meets researcher’s needs.
The development of the Simulacrum has also been supported by the National Cancer Registration and Analysis Service (NCRAS) within Public Health England (PHE), who hold the real cancer registry data on which the synthetic Simulacrum dataset is based. All the development work has been conducted on anonymous data released with the approval of PHE’s Office for Data Release.
Success has many parents
The Simulacrum has been a large collaborative project that could not have been achieved without an outstanding team of very smart people. With the passing of Stan Lee we want to acknowledge our own team of Superheroes and Heroes:
Superheroes: Cong Chen, Sally Vernon, Brian Shand, Paul Clarke, Ketan Patel, Betina Blak, Ruben Hermans, Lora Frayling, Ismini Chatzitheofilou.
Heroes: 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, and Matt Williams.
We would also like to thank all our colleagues in PHE, the NHS, 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 Cancer Registration and Analysis Service (NCRAS)
The National Cancer Registration and Analysis Service (NCRAS), also known as the cancer registry, is a division of Public Health England (PHE). PHE is an Executive Agency of the Department of Health and works with national and local government, industry, the third sector, and the NHS to protect and improve the nation’s health, reduce inequalities and support healthier choices.
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, visit: www.ndrs.nhs.uk
AstraZeneca 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, 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, visit www.iqvia.com.
The Simulacrum is released under a MIT licence:
Copyright (c) 2016-2018 HealthDataInsight
Permission is hereby granted, free of charge, to any person obtaining a copy of this software and associated documentation files (the “SIMULACRUM”) to deal in the SIMULACRUM without restriction, including without limitation the rights to use, copy, modify, merge, publish, distribute, sublicense, and/or sell copies of the SIMULACRUM, and to permit persons to whom the SIMULACRUM is furnished to do so, subject to the following conditions:
The above copyright notice and this permission notice shall be included in all copies or substantial portions of the SIMULACRUM.
THE SIMULACRUM IS PROVIDED “AS IS”, WITHOUT WARRANTY OF ANY KIND, EXPRESS OR IMPLIED, INCLUDING BUT NOT LIMITED TO THE WARRANTIES OF MERCHANTABILITY, FITNESS FOR A PARTICULAR PURPOSE AND NONINFRINGEMENT. IN NO EVENT SHALL THE AUTHORS OR COPYRIGHT HOLDERS BE LIABLE FOR ANY CLAIM, DAMAGES OR OTHER LIABILITY, WHETHER IN AN ACTION OF CONTRACT, TORT OR OTHERWISE, ARISING FROM, OUT OF OR IN CONNECTION WITH THE SIMULACRUM OR THE USE OR OTHER DEALINGS IN THE SIMULACRUM.