Only half of all clinical trials have ever reported results; the useful information that was gleaned from these experiments has never been made available. What does this mean? It means all of us are at risk of being exposed to poor treatment decisions. It means doctors and researchers are missing opportunities for new and better medicine, and it means patients are being enrolled in clinical trials that don’t need repeating. The problem is as urgent as it is serious. With every day that passes, information on what was done and what was found in the missing trials is at increased risk of being lost forever, as papers perish, storage disks fail, companies merge, and people with knowledge of these hidden trials retire.
But there is hope. In 2013 the AllTrials campaign was launched. AllTrials is calling for every clinical trial, past and present, to be registered and their results reported. In the two years since launch, 86,000 people and over 600 organizations have joined the campaign. Among many successes, we changed the law in Europe. Starting in 2016, it’s going to be law that drug clinical trials are publicly registered and results reported.
Then, on July 29th 2015, fifty US patient groups, medical societies, universities and consumer groups representing over 500,000 patients, doctors and researchers came together to launch AllTrials in the USA. On the day of the launch, patient activist AnnaMarie Ciccarella spoke about patients who volunteer for clinical trials. “We provided our bodies, our tissue samples, our data. I’ve heard the same sentiment expressed many times from patients in clinical trials, ‘This may not help me, but it may help another person.’ It’s time to honor that sentiment.”
Steven Woloshin MD, Professor at the Geisel School of Medicine at Dartmouth said “Imagine there was an election. Would you trust the results if only half of the votes were reported? Imagine if the winner of the election was the one who decided which half of the voting was reported? That would be crazy, but that’s what the situation is when trials are not reported.”
The National Physicians Alliance, committed to advancing the core values of the medical profession and represent 20,000 doctors said “Clinical trial results are bedrock to sound treatment decisions. Physicians and patients need to know what they yield. Trial secrecy betrays the trust not only of those who expect their participation to help future patients, but of the broader scientific community dedicated to curing disease.”
Many other organizations, involved in every facet of healthcare have written eloquently about why AllTrials matters to them. You can read what other supporters from the US, from the American Medical Student Association, to the Association for Pelvic Organ Prolapse Support, have to say about AllTrials by clicking here.
Since the campaign launched in the US, we have been contacted by dozens of organizations worried about hidden trial results, asking us what they can do to help. The problem of missing trial results in medicine is complex, and every type of organization, from patient support groups to professional medical societies have a different role to play to help fix the problem. Every sector of society has a vested interest in medicine too, so it’s no surprise that industries outside of medicine are joining the campaign.
Just recently, 85 investment firms representing more than $3.8 trillion partnered with AllTrials, and will meet with pharmaceutical companies to discuss their plans to register and report results from clinical trials, past, present and future. $3.8 trillion is a staggeringly large amount of money, highlighting the strong business case for trials transparency. Massive fines have been levied over misrepresented data, and approximately 30% of a drug company’s valuation is based on the results of its Phase-III trials. Naturally, the risk-averse investment community are very keen to make sure that none of these data arewithheld. The investors will do a great job of monitoring the companies’ compliance with their own promises too, so we’re delighted that they’ve joined the campaign.
AllTrials has achieved a lot, but there’s still so much more to do to fix the situation for future generations. What can you do to help? Join our campaign by signing our petition, and write to the directors of your organization and ask them to publicly support AllTrials. Please contact me to learn more about what you can do to help the campaign for clinical trials transparency.
Image Credit/Source:Oleg Prikhodko/Getty Images