Working with the funders and linking up with some friendly trialists, Louise and colleagues attempted to push forward on some of these more practical issues surrounding sharing. The proactive work aimed to support data owners to look in detail at possible data publishing and access workflows, that would move trials beyond a simple listing in an online registry. Louise notes:
“I wanted to explore where the ‘blockages’ were, particularly uk rcs data having witnessed positive sentiments to share trials data, yet a certain inertia in moving forward. I saw real concerns over who is best placed to take responsibility for risk and harm resulting from exposing patients, through IPD sharing. The fear is high, even when the risk might be low, and barriers to sharing are complicated by multiple actors and stakeholders in the ‘risk chain’. Pilot studies have been actively sought to work through some of the practical steps and barriers.”
In the autumn of 2018 Louise was invited to a meeting of the UK Clinical Trials Network in Leeds, which bought together triallists in a positive space to present both case studies of data sharing legacy trials, legal frameworks and governance strategies, and more practical issues, such as suitable formats and metadata. The tone of the whole meeting was upbeat and positive, with enthusiasm to help motivate data sharing.