The American Cancer Society, Gates Foundation and CDC have still not put into place policies to curb research waste, a new study shows.
Its authors reviewed the clinical trial registration and reporting policies of the nine largest non-commercial medical research funders in the United States. Four funders have adopted strong policies, two have a mixed record, and three still fail to monitor both trial registration and trial reporting.
The table below shows the strength of each funder’s policies.
Scoring system: Funder policies that set clear rules and include compliance monitoring are highlighted green. Funder policies that do not set clear rules, and/or fail to monitor compliance, are marked in red. Example: NIH, PCORI, VA, FDA and AHRQ all require summary results to be posted within one year, and monitor compliance with that rule, and are thus marked in green on that dimension. In contrast, Gates Foundation is merely “supportive” of summary results sharing, and does not monitor compliance, and so is marked in red.
Together, the nine institutions spend close to $30 billion dollars a year on medical research, most of it public money.
According to one widely cited estimate, 85% of medical research funding goes to waste, half of it due to non-reporting of results.
Failure to register trials or report their results is unethical - and in some cases illegal - because it undermines public health and harms patients.
Under U.S. law, many clinical trials are required to post their summary results within one year of trial completion, but the FDA has so far ignored calls by patients and doctors to enforce the law.
An earlier study using the same methodology to assess the world’s largest funders had found a similarly mixed picture (note that some results be outdated by now):
Transparency International, Cochrane and TranspariMED subsequently wrote to those funders, urging them to take action to protect patients’ interests. More recently, a coalition of French medical and patient groups challenged national public funders INSERM and CNRS on the same issue.
The authors of the new study conclude that:
“[F]unders can implement policies with specific registration and reporting requirements and monitor their awardees for completion. Funders can consider withholding additional funding from researchers or institutions who fail to perform. A convergence of efforts across the research system is required to shift the culture of research to embrace greater transparency and public accountability. As another tangible benefit, through requiring trial registration and the dissemination of results, funders can increase efficiency by allowing others in the biomedical research ecosystem the information needed to avoid unnecessary duplication and to build on existing research.”