This week’s blog picks up my recent post about the importance of clear communication.
As part of the NIHR’s new patient involvement strategy, we will be working to ensure that good lay summaries accompany descriptions of clinical trials. The government has called for “dramatic and sustained improvement” in the initiation and delivery of clinical research and ensuring patients know what is being asked of them is a vital start.
Thinking about this led me back to the House of Commons Science and Technology Committee Enquiry into Clinical Trials last year, which received input from INVOLVE – the national advisory group for the promotion and advancement of public involvement in health and social care research.
Commenting on the UK Clinical Trials Gateway, a website where patients can find out about trials they can join, INVOLVE told the select committee : “The UK Clinical Trials Gateway (UKCTG) is a potentially important vehicle for making clinical trial results and data more publicly available.”
What a lot is conveyed in the word “potentially”. While the UKCTG says it “provides easy to understand information about clinical research trials running in the UK”, it gathers its content from places where it may be less clear that lay really does have to mean lay, with the result that the “potential” referred to above is far from being realised.
Over recent months both professionals and patients working in the field have asked me to do anything in my power to help sort it out. They are not alone in their frustration. The formal Government response to the Enquiry into Clinical Trials concluded: “We consider it important that the information contained on the Clinical Trials Gateway is accessible to the lay person, which does not appear to be consistently the case at present.”
In my despair I went to Simon Denegri, who chairs INVOLVE and is NIHR National Director for Public Participation and Engagement in Research. He told me: “The issue – which we all need to be pressing home in our respective institutions – is that the data including lay summaries is drawn up from ClinicalTrials.Gov and other places at source.
“If it is wrong there, it is then wrong all along the line. We can’t change it before it gets to UKCTG unless we spend vast amounts of money to rewrite everything. So, researchers and teams need to be getting the lay summary and contact details right at the start.”
This need for clarity is arguably nowhere greater than in trial registries. Patients use these before deciding whether to get involved in research – which may be of little or no use to them, but a hugely altruistic act to move forward the evidence base on which future patients will be treated. They deserve better, and I will do all I can to achieve better in Oxford.