The turn of the year is always a time for reflection as well as resolutions for what lies ahead. I was recently heartened by a colleague’s praise of our Patient and Public Involvement Working Group’s efforts to promote openness and transparency around clinical trials, and delighted when Nature invited us to comment on their recent news article about the trials tracker. This is an automated tool devised here in Oxford that can trawl through thousands of records to reveal which drug companies and academic institutions are failing to publish the results of their trials. It’s a fascinating way to spend some time, and you can now read the comment that we have added to the piece, rounding up what we have done since working with our host trust to sign AllTrials. This “doing” was really important to me: it’s easy to declare allegiance with a generally held good – in this case, ensuring trials are registered and reported – but much harder to take steps that assess and promote this.
Please share this blog link as widely as you can – we’d love more organisations to follow our audit method to see how good they are at reporting trial results as well as replicating the follow up work that one of our trials’ units has carried out to ensure they are working in accord with the recommendations our Directors made in the audit paper.
We are also always keen to share our approaches to writing lay summaries and ensuring these are logged in the right place in the two main trial registries to ensure that they in turn appear correctly on the UK Clinical Trials Gateway (where patients may seek them). Our method for this can be found in a PDF here under “links” in a document called “Guidance on providing lay summaries for all researchers.”
So, that’s the reflective bit. The resolutions lie in the work that still needs to be done to move us from a time when millions of people worldwide join thousands of trials that are never published. Amazingly, that time is now, betraying patients’ trust and leaving evidence-based medicine without the tools it needs to be delivered.
Happy new year.