Synthetic Data for Regulatory and Payer purposes | REDDIE Webinar

On July 18th 2024, REDDIE launched its first webinar entitled “Any resemblance to real persons is purely coincidental: Synthetic data for regulatory and payer purposes’’. The webinar, attended by more than 100 people, was hosted by Amanda Adler from the University of Oxford and Gabriel Rogers from the University of Manchester.

Amanda Adler introduced the event and the REDDIE project, and explained what the REDDIE group means when talking about ‘synthetic data’. She proposed that synthetic data may help answer the questions regulators and payers ask about new technologies, whether they be drugs, devices or other interventions. She explained that the inspiration for the webinar came from the challenges researchers faced in the project itself while trying to gain access to country data registries for the usage of synthetic data; Marcus Lind from University of Gothenborg in Sweden mentioned the challenges in accessing the Swedish registry for a synthetic data project.

Further Inspiring this webinar was the notion that some people understand lots about the technical aspects of synthetic data, but have perhaps less concern over privacy issues, while there are people who understand little about the technical aspects of synthetic data, and care a great deal about privacy concerns.

Professor Gillian Raab, a statistician from the University of Edinburgh, Scotland, and expert in the field of synthetic data, gave the keynote talk entitled, ‘What is synthetic data, how private is it, and how to manage disclosure control?’. She concluded that is it possible to produce good-quality fully synthetic data to use for widening access to data, creating data sets for teaching, and to test new methods. She believes that whether disclosure risk will be accepted depend on who has access to the data and under what conditions. Her talk is available on the website here.

Gabriel Rogers gave a presentation explaining REDDIE Work package 3 and the focus on synthetic data in diabetes. Gabriel presented REDDIE plans for creating and testing synthetic data within the project, to explore how it might be used in health technology assessment focusing on diabetes care.

The webinar ended with a round-table on the topic of ‘What are the opportunities and issues for synthetic data for regulators, payers, and, ultimately, patients?’ 12 panelists represented patients with an interest in data usage, regulators, payers, national data bases, academia, industry and others participated. All panelists reflected their views and not those of their employers.

Thank you to all panelists and participants for taking the time to listen to the webinar and taking an interest for synthetic data. Feel free to reach out to us here.