Clinical Trials

Funding and publishing trials

Running large well-designed trials costs a lot of money – though as some people pointed out, trials can also save money in the long run.

Funding for trials can come from a range of sources, including:

• The NHS and the National Institute for Health Research (NIHR)
• Government-funded research councils such as the Medical Research Council (MRC)
• Major research charities such as Cancer Research UK
• Commercial companies

The patient information leaflet you are given when a trial is explained to you should always make clear who is funding the research.
 
A few people we talked to were not aware that the NHS funds trials. One person thought the trial she was in was funded by a drug company. She said, “It’s self-explanatory really... I mean, where else would the money come from?” When she was told that many trials are NHS-funded, her surprised reply was “Really? Goodness me, heavens!” (The trial she was in was in fact funded by the NHS).
 
By contrast, Marie assumed the trial she was asked about must be NHS research because she was approached through her consultant in an NHS hospital. She was worried to find it was not.
Marie referred to a Phase 1 trial at a commercial research unit based at Northwick Park Hospital in 2006, when 6 healthy volunteers became extremely ill. Many people said they were a bit suspicious of commercially run trials, and the belief that they might be more risky than publicly funded research was often given as a reason. This was certainly the view held by Leslie, who became seriously ill during a trial.
However, others took the view that all trials are well regulated, whoever funds them.
Lester raises two further concerns affecting levels of trust in commercial research: the profit motive, and the question of whether trial results are fully published. Taking the profit motive first, several people expressed worries about the pharmaceutical industry’s need to make money out of drugs and how this affected the kind of research carried out. Celia wanted more government research funding instead, whereas Julian felt this was unlikely to be achieved.
However, Caroline noted that funding priorities are influenced not only by drug companies but also by powerful charities with interests in specific conditions. (See also ‘Under-researched topics/priorities for other research’).
Some people argued that investment from drug companies was vital, and said they had few concerns about their involvement, or at least wanted to keep an open mind. Anthea commented particularly on Phase 1 trials, “If the companies weren’t funding them, they wouldn’t be being done. There’s no way that the National Health Service or anybody else could afford to do these trials.”
Another concern raised by Lester (above) is the issue of publishing trial results. There are concerns that research teams are less likely to publish the results of trials which show the intervention did not have the effects they hoped it would have. (These results are sometimes called ‘negative findings’). Many people think drug companies have an extra reason to keep negative findings quiet, because it may affect their sales and profits. There was a lot of support for regulations to insist that all results are made public.
However, Kate, who works for a healthcare charity, thinks that drug companies have acquired an unfair reputation. Most research teams will want to publish their findings as articles in academic medical journals, which get independent experts to review the articles before they are accepted (a system known as peer review). Kate thought sometimes peer reviewers were more likely to find fault with drug company research because there is “a bit of a stigma attached to pharmaceutical companies”.
Problems in publishing ‘negative’ findings may not be simply to do with who funds the research, however. Publicly funded researchers may also find it difficult to be honest about ‘negative’ findings, as they may feel it will affect their career and their academic reputation. They may feel very passionate about a new treatment they have developed and be unwilling to admit that their hopes for it have been disappointed.
(There is a dilemma here – researchers are right to be cautious about jumping to conclusions too early in a trial. Large trials can take a long time to get enough people and enough data to draw reliable conclusions. However, sometimes results are so obvious that a trial has to be stopped early, either because one of the treatments is strikingly better than the other, so it becomes unethical to withhold it, or because risks are revealed that are too great).
 
Even if researchers do submit reports of ‘negative’ findings, academic journals are sometimes less likely to accept them for publication compared to articles reporting ‘positive’ findings. New breakthroughs may be seen as more exciting reading than a report that a treatment does not have the effects hoped for and is not worth pursuing.
 
But ‘negative’ findings are just as important and valuable as ‘positive’ findings. They can mean that future patients are not exposed to unnecessary risks from treatments which do not work, and that money can be better spent elsewhere. In recent years there have been a lot of efforts to encourage researchers and journals to think differently about ‘negative’ findings.
 

Last reviewed July 2015.
Last updated July 2011

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