Podcast recap: Balancing privacy and progress in healthcare data with Ben Goldacre

ben goldacre

In the latest episode of The Genetics Podcast, Sano CEO Patrick Short had an enlightening conversation with Ben Goldacre, a prominent figure in healthcare data and open science. Ben discussed his pivotal work at the Bennett Institute, highlighting projects that leverage open data to improve healthcare outcomes.

Open data projects

Ben kicked off by detailing the open data projects at the Bennett Institute, which aim to tackle critical challenges in healthcare through data transparency and accessibility. These initiatives are driving significant improvements within the National Health Service (NHS), showcasing the power of open data in healthcare. The conversation then turned to the use of Electronic Health Records (EHR) in enhancing patient care within the NHS. Ben explained how EHRs can provide valuable insights and optimise healthcare delivery. He also emphasised the importance of software development in managing and analysing healthcare data.

OpenSAFELY: Balancing data security and usability

Patrick and Ben discussed the OpenSAFELY platform, a groundbreaking initiative designed to navigate the delicate balance between data security and usability. Ben shared the platform’s journey from a concept to implementation, discussing the various challenges encountered along the way. He also highlighted that synthetic data has been successfully used to mitigate privacy concerns while enabling valuable research. Despite these advancements, he acknowledged the challenges inherent in working with and analysing electronic health data, including data inconsistencies and the difficulties of coding variables within research silos.

Health data sharing and privacy

Ben elaborated on the diverse opinions surrounding which types of health data should be sharable and how to manage privacy and anonymity. He explored the complexities of granting data access while protecting individual privacy and the innovative use of randomly generated “dummy” data to build and test code and statistical models.

EHRQL and standardisation

Ben also discussed the development of EHRQL (Electronic Health Records Query Language) and its role in driving standardisation in health data analysis. He shared insights into how the OpenSAFELY framework serves as a portable, open-source set of data analysis tools, facilitating data preparation and analysis both within and outside the UK. Ben underscored the importance of standardisation and domain-specific language for data preparation, explaining how these elements encourage the creation of high-quality, unified code, ultimately advancing the field of healthcare data analysis.

As the episode drew to a close, Ben encouraged continued support for open science initiatives and invited listeners to explore the OpenSAFELY platform and its applications in improving healthcare outcomes.

Summary

This conversation was a fascinating exploration of the cutting-edge work being done at the Bennett Institute. The potential of open data and the OpenSAFELY platform to transform healthcare are massive in the field of genetic medicine, and Ben’s professional insight and dedication offer a hopeful outlook for the future of precision medicine.

Listen to the full episode here:

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