Most of the world’s largest charities and government bodies who fund clinical trials don’t ask that the results from these trials are reported.
An audit of the stated transparency polices of the 18 philanthropic and public bodies that spend the most money on clinical research has found that most do not require researchers to report results (44% or 8 funders do) and that only half of the funders ask for clinical trials to be registered (50% or 9 funders do), the very lowest most basic standard of transparency.
The audit, from Dr Ben Goldacre’s team at the University of Oxford, assessed the funding organisations’ policies on clinical trial transparency under three domains: trial registration, summary results reporting and patient data sharing. They found the organisations have a mixed bag of polices. Three of them seem to ask for no commitment to transparency from their funded researchers – they don’t mandate any of registration, summary result sharing or data sharing. Only two organisations have a requirement that covers all three domains. These are the UK’s Medical Research Council and Germany’s research funding organisation Deutsche Forschungsgemeinscaft.
Sixteen of the audited organisations are public bodies and two are philanthropic organisations (The Wellcome Trust and Bill & Melinda Gates Foundation). Between them the 18 organisations spend around $40 billion on health research every year (figures from 2013, reference below).
The policies in the audit were current between February and April 2017. In May 2017 the WHO asked non-commercial funders worldwide to sign up to its strong standard on transparency. Six of the 18 organisations included in today’s audit have committed to eventually meeting the WHO standard.
An audit of the world’s largest pharmaceutical companies’ policies on transparency, run by some of the same team as today’s audit and published in BMJ in 2016, found that over 90% of companies have policies to both register their trials and to report summary results.
The research letter Noncommercial funders’ policies on trial registration, access to summary results, and individual patient data availability is published today in JAMA by researchers at the EBMDataLab, University of Oxford including AllTrials campaign co-founder Dr Ben Goldacre.
Ben Goldacre, co-founder of AllTrials and lead author: “These results are concerning. Public funders have fallen well behind and are now doing worse on transparency than the pharmaceutical industry. We need these funders to show leadership, to tell their grant recipients very clearly that all trials must be registered and reported, and their data shared.”
Síle Lane, head of international campaigns and policy, Sense about Science, one of the co-founders of AllTrials: “It’s so disappointing to see that most of these charities and federal funders are not asking researchers they fund to register and report clinical trials. It is beginning to seem like they don’t care whether results from trials they fund are shared or kept hidden. We have written to funders who have joined the WHO’s joint statement to let them know that we will be auditing their policies again soon to see if they have fulfilled their commitments.”