what i'm about to tell you will shock you. it shocked me the first time i heardabout it and frankly it still shocks me. when you go to a doctorand they prescribe you a medicine you presume it's been tested and we know everything there is to knowabout whether it works, right? well guess what. a lot of the timethat's just not the case. and this is because around half of the clinical trialsthat have been carried out
on medicines that we use todayhave never published results. so we don't know what was found outabout our medicines in around half of the biggest trialsthat have happened on them. clinical trials are those big tests where some people are given a new medicine and some other people are givena different medicine or no medicine at all to test whether the new medicine worksand to see if it's safe. the results from those trialsare then used by governments who have to decide whetherto pay for the medicine.
by regulators, who decide whetherto allow the medicine to be sold. by doctors, deciding which medicineto give to their patients. by researchers, deciding whether to domore research on that medicine. so if the results from halfof these tests are missing it means that these decision makers lacka huge amount of the information they need to make good decisions. it means that doctors haveno way of knowing for sure that the medicines they're giving theirpatients are the best medicines and that they're not in fact doing harm.
here's an example: a heart drug called lorcinide was testedin clinical trials in the 1980's. the results of those trials showedthat the patients given lorcinide were far more likely to dieduring the trial than the patients not given lorcinide. those results weren't published. not until ten years later. and in those ten years, doctorscontinued to prescribe medicines like lorcinide to their patients.
and it's been estimated that morethan 100,000 people died as a result. when clinical trialinformation is kept hidden it means governments and regulatorsare at risk of making the wrong decisions. one regulator, for example, in the uk recommended that the uk governmentbuys a stock of a drug called tamiflu on the basis of the resultsof clinical trials that it had seen. so the uk government went aheadand spent 480 million pounds. that's nearly half a billion poundson this medicine. but then, some researchers saw thatthe government had only seen the results
from a small number of all the clinicaltrials that had happened on tamiflu. they battled for years to get the resultsof all of those trials released and when all the results were put together it turned out that tamiflu just wasn'tthat effective. that was half a billion poundsof government money wasted. and here's another problem: when the results of trialsaren't published it means that researchers and doctors can't build on researchthat's already been done.
so much knowledge about medicinesand about diseases is generated in clinical trials but if the results aren't shared,all of that knowledge is lost. and it means that clinical trialsget repeated unnecessarily wasting loads of money -they're very expensive to run - and putting the people who volunteerfor the trials needlessly at risk. now we're getting to the heart of whyi really care about this. it's because of people who volunteerfor clinical trials. you know, clinical trialscan't just happen.
people have to volunteerto be part of them. usually there's hundredsof people in a trial. big trials can includethousands of people. these people are patients, mostly,who volunteer for the trials knowing that it might, or might not,help them personally to be part of it but knowing that it will help other peoplein society in the future. the people who volunteerfor clinical trials and i think they're amazing, these people willingly and for the goodof all of us put themselves at risk
because there's always some riskwhen you're testing something new and they take a gamble, because it mightbe the medicine they get in the trial is not as good as the medicinethey would otherwise take. and they give up time, so much time, going to endless hospital and doctors'appointments as part of the trial. time they would probably prefer to bespending with their friends and families. so they put themselves at risk, they takea gamble and they give up their time and they do all this trusting that ifsomething is uncovered about their condition or the medicinein the trial, that that will be shared
with doctors and researcherswho can take it and use it to make life better for people like them in the future. so when the results of halfof all trials are kept hidden and the results are never used what an enormous betrayalof these people's trust. if thousands of clinical trialshave never published results that's hundreds of thousands,probably millions of people whose trust has been betrayed.
now you might be wondering,how do we know that clinical trials haven't published results? what do we know aboutthis missing information? and the truth is we'll never havean exact number of the clinical trials that never published results because there's no list of all the trialsthat have happened that we can check against. but researchers have started to get a feelfor the amount of missing information. a researcher looking into this,the first thing they would do
is try and identifywhat trials have happened. to do that they would go toa clinical trial register. these registers are online databasesset up by governments, by the who, by universities, where clinical trialsponsors are encouraged to go and log details of trials they're runningso that doctors and patients can see the trials that are happeningand maybe join them. so, once researchers have identifiedtrials on a register then they can follow those up,they search around they look in medical journals,or in reports from conferences
or in other registers to try and see if they can findany results from that trial. now that's not easy to do. it's not easy to findclinical trial results they could be in oneof hundreds of different places and it's not always easywhen you do find some results to be sure they do actuallymatch the trial you identified. it would take an eternityfor a researcher to do that with the millions of clinical trialsthat are now on registers.
so what researchers have started to do is to focus in on some subsets of trials. like, a researcher might look at allthe trials done just on one certain drug or all the trials done lookingat a particular condition or maybe all the trials that happenedin one year in a particular country. hundreds of pieces of researchlike those have happened now each looking at a smallpiece of the puzzle and they, quite consistently, are showingthat half of the body of clinical trials have never published results.
and researchers have begunto look too at the kind of results that do and don't get published. and it looks like there are a lot moreresults from trials which show that a medicine works, published, than trials which showthat a medicine doesn't work. and now we know that trials which givea so-called positive result are twice as likelyto have published results than trials which give a negative result. so not only is a huge amountof the information
about our medicines missing the information that is there doesn'tnecessarily give a true picture. it's biased. when i tell people this, that it's morethan likely the trials which show that medicine is dangerousand doesn't work are kept hidden they ask me, well, does it matterif a medicine doesn't work? it doesn't matterif the trial isn't published. but that's what happened in the casesof lorcinide and tamiflu earlier. when those trials aren't published,
we're at risk of wasting moneyand hurting people. we need the results from all of thosetrials to be made available. how did we get into this situation,where information is being withheld that means we are wasting moneyand we are hurting people. when i tell peoplethat this is what's happening they almost always ask me back:isn't there a law against this? and the answer to that is: sort of. yes. but in reality, no. there isn't. there is a piece of lawin the united states
which says that for some particulartrials that happen in america should be put on a registerand report results within a year of the end of the trial. that law has existed since 2008. yet, in 2015, when researchers lookedat those particular trials in the states they found that only about 20% had actually reportedresults within a year. that's only one out of five trialsfollowing the law. four out of five trialswere breaking the law.
yet no one has ever been fined. there's going to be a law like thisin europe soon when the new clinical trials regulationcomes into force in 2018 but where the laws exist nowno one's following them so, will anybody follow that? clinical trials are carried outby companies, by universities, by charities, by governmentsfor all sorts of different reasons and they happen all around the world. there will never be a lawor a set of guidelines
that is enforceable across all of those. different countries and different sectorshave different practices. however, something that does seem to unitemany sectors running clinical trials is the culture of secrecy that has grownup around clinical trial results. it's become the norm. in fact, it's become okthat if you get a result in a trial that you don't like, that you can putthat trial in your bottom drawer forget about it and move onto the next thing. it's what's been done the world over.
and it's not ok. and it's got to stop. it has got to stop. so how do we fix this? imagine there was a law. imagine a brand new, strong, global lawcomes into force tomorrow which says that from now on everyclinical trial will be registered and results from them will be reported. good, yeah? but that wouldn't be enough.
because the medicineswe and our families use today and will continue to usefor years into the future were tested in trialsthat happened in the past. trials that happened years agoor decades ago. and not until all the informationfrom those old trials is made available to regulators and researcherswill we be able to trust that we know everything we shouldabout those medicines. so what to do about those old trials? academics have known about the problem
of clinical trial information missingfor decades, for more than 30 years now. and not much has happened to fix that. but, and here's the good news,things are starting to change now that a lot more peopleare getting involved in this. thousands of people persuadedthe european parliament to vote in the new clinical trials law. hundreds of organizations backedthe world health organization when they said that clinical trial resultsshould be published. there's now a movement led by patientsand by patient groups
all around the world,including here in spain, which is calling on policymakersand clinical trial sponsors to do everything they canto get that old information out there and used before it's lostfrom us forever. we're called all trials. and we're called all trials espaã±ol. we're telling everybody we canabout this problem and we're asking you all to pass it on because not until a lot more of usknow about this and are talking about this
will we be able to overturnthat culture of secrecy and make it so that keeping clinical trialinformation hidden is no longer ok. people don't quite believe mewhen i tell them that we're not surethat we know everything we should know about our medicines, but it is true. now, we've got to do everything we can to get hidden information outand into the light before it's too late. (spanish) thank you. (applause)
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