The Transparency Mindset: Why Clinical Trial Results Still Go Missing with Andrew Freeman
Andrew Freeman spent over two decades at GSK, where he led the company's efforts on clinical trial transparency - trial registration, results reporting, and sharing patient-level data with researchers. Yet when his own father was diagnosed with late-stage cancer, he couldn't find him a trial through clinicaltrials.gov. He gave up and found one through a personal contact instead. As Andrew puts it, that shouldn't be the way it works.
Andrew was at the WHO meeting in Geneva where the 20 or so data elements for study registration were identified, and since the end of 2022 he chairs the board of ISRCTN, the UK's clinical study registry.
In this episode, Andrew and Maya discuss:
- Why a "compliance mindset" and a "transparency mindset" are not the same thing - and why studies outside the regulatory definition of a clinical trial should still be transparent
- What the latest HRA metrics really show: 94% of UK studies registered sounds good, until you see that only around 44% published their results
- How ISRCTN is trying to make transparency easier - mandatory plain language summaries, mandatory recruitment site information, and a results posting system now in its second prototype
- Where AI could help make trial information understandable for patients, carers, and the public
Creators and Guests
