The hidden side of clinical trials | Sile Lane | TEDxMadrid

Around half of the clinical trials done on medicines we use today are not
published. A tragic truth that needs to be changed, to help doctors do their
job properly and to not betray the trust of all those who have volunteered
to be part of those trials.
Find out more about the AllTrials campaign ad references for claims made in
the talk at www.AllTrials.net. In particular, read more about the claim that
around half of all clinical trials on the medicines we use today have not
published results here
www.alltrials.net/wp-content/u....
Audiovisual producer: Daniel Goldmann. Editing: Xavi Fortino. Film team: Elena Salcedo, Josep Fernández, Daniel Davidson, Nicolás Mazzini, Nacho Valentín, David Ramos, Ignacio Fuentes and Fran Rubio.
Síle Lane is director of campaigns and policy at Sense about Science, a charity concerned with the use and abuse of scientific evidence in public life. Síle helps run the global AllTrials campaign for clinical trial transparency which is supported by thousands of people and organisations worldwide. Find out more at www.alltrials.net
This talk was given at a TEDx event using the TED conference format but independently organized by a local community. Learn more at ted.com/tedx

[@tazkasmani3195]

This was upsetting to watch. 3 years ago I almost died following a Clinical trial dose for Volanerosoreson. There was zero care provided to me afterwards and none of the findings were ever shared or published.

[@tracielang9500]

It's fact

[@ilaila3504]

I'm studying cell and molecular biology and did not realise that the results of all clinical trials are not necessarily published. That's incredibly serious and I hope to find out more about this. great ted talk.

[@fredrickmiltonthaddeusdoug9747]

Umbrella Corp

[@gerry4075]

Very well presented. I am a volunteer and have been at many trials. It is true, although I tick the box to say that I want to be informed fo the trial results, I still have not been contacted after the fact. I will continue to volunteer and stress for these results. Thank you for opening our eyes.

[@Capricorn197530]

I did a trial. I did it because it was something that affected me directly (a solution for acne scarring) and I'm not ashamed to say for financial reasons. I was treated with the utmost care and respect. The money helped me to stay afloat and care for my mum who subsequently died. I'm lucky to be healthy, so if I can help to develop new medicines I will. I trust science

[@gettinhawd2312]

And the ones that died don't have the chance to tell everyone on youtube... do not trust science.

[@MilwaukeeWoman]

I trust science but not corporations.

[@mara8456]

@@MilwaukeeWoman Science and corporations shouldn't be confused with each other.

[@TeeMac68]

You say that as if science is a singular point of unchanging objective opinion!!! "I trust science". Who's science, what science? Look back at scientists who were considered the heretics of their day only to be proven right years later as science changed. What is wrong with you people? Are you incapable of expansive, free thinking? Too much effort eh. Better to be spoon fed a particular narrative by those with an agenda, like the rest of the masses.

[@extrastout1741]

I mean we have the whole opioid epidemic afte roeople were perscribed FDA approved medication by their drs. I don't blindly trust because u were fine after some acne medication

[@maxinewhitton8138]

This is an excellent presentation delivered in clear language that everyone can understand. I have circulated it to many of my friends who sometimes find it difficult to understand what I do. I am a retired academic librarian, now a patient researcher who has led 3 Cochrane systematic reviews of interventions for vitiligo, a skin condition that I suffer from. I am currently participating in a trial now. In fact I did participate in a trial many years ago that was never published. I have also for many years been a supporter of Alltrials and the work they do. Anything that informs the public of something so vital is to be welcomed. Maxine Whitton

[@dansfera]

Maxine Whitton we need more awareness

[@Cytzix]

Hi Maxine, I am sorry for your disease. But are you sure your trial was never published? If you signed the Informed Consent Document, you should find the study title and the protocol number there. Try find the study via google search, I am sure you'll find some results, since it is regulated by the law for all studies to be public. Hope you will find some answers.

[@Grandmastergav86]

It leaves far more questions than answers and in truth doesn't impart any knowledge that the average person wouldn't have already been aware of.

[@larissadefreitas8261]

I would like to know the source of all information you provided!

[@sukhmanicambridge]

Until results of ALL CLINICAL TRIAL are mandated to be published....this situation will continue. Only those ‘in the field’ are aware of this. I used to work in Research Ethics which is why I know what she’s saying is absolutely true.

[@cruddyruddi]

A lot of the information is referenced on the Alltrials website.

[@sqrt-1646]

Check the description.

[@larissag2218]

I have worked as a CRC at many sites over the past few years and have noticed there are many discrepancies among almost all of them.. After the Covid pandemic many sites popped up all over, for some reason primarily in the southwest, and turned into almost a “mom and pop” type of industry. Almost anyone can open a clinical research site and hire staff with little or no medical knowledge and provide at best, very little or no training and start a trial. It was amazing to see how many documents were fudged and how many subjects were allowed into these studies that should have never been allowed to take an experimental medication. I’ve seen them take on 4, 5, 6 studies and write names on the delegation logs just to initiate the studies, then fire the staff or everyone quits due to frustration. The other staff that I worked with walked out which left me the only CRC at a site to oversee six start up clinical studies by myself. I will never work in this industry again because the reality is they don’t really care about what happens to these patients.

[@melissaburnett6297]

I am so sorry to hear that your experience as CRC was this horrible. I would never work for a company that treats their staff like this especially in research. I have been in research for 6.5 as a CRC and I have NEVER had this experience. I am so thankful I work with such wonderful PIs that actually care about our patients and don't push research on patients. They are always open that they are physicians first and research professionals second.

[@BridgingTheGapCT]

Thank you for shining a light about the effects of Clinical Trials on the overall healthcare system, and the risks volunteers take to commit to these trials! All results should be published to get a clearer picture about a medicine and better understand its effects on individuals.

[@pericologan]

Thank you very much for this clear and informative presentation! Should be shared with many more people!

[@bishousuru]

Although I do force myself to upload the results of trials to EudraCT database, I also feel compelled to say that It is in fact really complicated and time-consuming to achieve. I'd like to take this opportunity to ask someone to improve this, so just by typing a certain passkey (even if it was restricted to the PI&sponsor) you can access the "registration page of the trial", and enter the data just by clicking on "edit" (uploading xml, whose template doesn' exist is not working).

[@nigelmagic9431]

Patents and federal government approvals is indeed one of the most important principle in medical research and commercial use of medicine in our society

[@bonmercer]

Thank you. Well done.

[@jenmadkins]

Why is it not legally required to publish all clinical studies wtf

[@Kumarsahani]

Each trials run under regulatory authority and audit keep happens. As per our clinical trial information system we are able to conduct trial unbiased way and transparent to it include government audit body. Even to tweaking their law and government can publish failed trial publicly.

[@yvettejohnson7140]

Thank you

[@adeleruschitzka971]

This is a great TEDx talk! Thanks! Read the book "Bad pharma" published 2012 by Ben Goldacre! Hoping the situation has been improved since then

[@weich1q2w]

You will be wishing forever

[@austinavery266]

There needs to be some sort of a 3rd party that conducts the trials and makes them available to the public. Conflicts of interest arise when the same company that SELLS the drug does all the RESEARCH on the drug and determines what PARTS of that research to make PUBLIC. It is simply too much power given to a business with one goal in mind - PROFIT.

[@austinavery266]

The whole TED talk aims to expose what is known in the research community as publication bias

[@Stephen981cs]

This is not true. The people conducting the trial are the Investigators and real world doctors. The pharma companies just sponsor and design the trial. The trials are also blinded and randomized and are subject to regulatory inspections and audit. Some trials can cost hundreds of millions of dollars. There’s no way a third party company will run and sponsor a trial that they have no vested interest in eventually selling.

[@austinavery266]

@@Stephen981cs I see. I didn't mean there should be a company to just do research on every drug for the sake of humanity. So basically just forget the third party (because there technically is a third party already - hired investigators and real world doctors who conduct the trials) and that there should just simply be a law to disclose the results instead? To avoid situations like with Tamiflu?

[@sukhmanicambridge]

Austin Avery we just can't trust the companies who do the trials to publish them...

[@Raiden-the-Goat32]

Yes! This is what I have been saying for the longest time. It is a very simple fact that most people overlook.

[@YogicNeurosurgeon]

131 dislikes are from clinical trial principal investigators:)

[@eddy_ondamix]

Can’t see dislikes no more

[@cwagner122]

@@eddy_ondamix right I'd love to see what it is now I bet it ain't 131 no more

[@zes7215]

wrr

[@zbo_77]

If a trial drug isn’t safe or successful, it doesn’t pass that phase. Safety is usually phase 1 so it’s still usually 8 or so years from market. So no, a dangerous drug is not being prescribed

[@HappyLife-wv5ms]

Unless you get emergency use authorization 😫

[@Raiden-the-Goat32]

This is not the case if it was most drug companies would not hide side effects of the drug's themselves and multiple drug's have been taken off the market. Do you know why this is ? The drug company hide this information and they knew about it in advance. Do you actually think the drug company is concerned with safety? Because if you do you are being naive. The drug company cares about 1 thing $$$$. You have plenty of cases on which the drug company hide dangerous effects of a drug.

[@Bithiah333]

@@Raiden-the-Goat32 yup! Why hide the results if there’s nothing to hide? Also, they rarely wait to see the long term effects before pushing doctors to prescribe it.

[@Raiden-the-Goat32]

@@Bithiah333 Exactly! Also sorry for the long reply I had to run errands today. But yeah most people do not put this together Unfortunately.

[@joselara371]

@@Raiden-the-Goat32 because most people that go to clinical trials are mostly terminal so there really isn't a choice it's either a cure or death some are voluntary to

[@andreask5054]

What's the situation with this in 2020? Please update.

[@shrutijadhav241]

Really very good explanation. Thanks mam

[@raulmmurray9439]

Interesting talk. Very informative.

[@BoilsonA]

Its also extremely difficult to publish ineffective outcomes.

[@yoza2392]

Government shouldve gotten all the results before paying $480million on the 'tammy flu'. I do full research before buying portable speakers smh

[@Grandmastergav86]

With that said, if Lorcinide hadn't been trialled during that period, would the net loss have been any greater? I'm assuming that any side-effects of the drug itself would've likely exacerbated the condition in some cases. I'd be curious to know the ratio, plus the breakdown of comorbidities in those that passed away. Obviously during trials, the full effects of the drugs isn't know but still, I'd be intrigued to see in-depth analysis of these findings.

[@brandonhowarth2402]

Human trails like test and study research to find cures and prevention for the now and close future? Is it like that, thats all i got comments for now maybe later in early 2022 maybe?

[@omarb2021]

I'm in a clinical trial as I write this. This is my 18th clinical trail I've done over the last 4 years. I am informed and sign a waiver on the possible side effects if the drugs, some approved by FDA and some not yet approved by the FDA. As far as I'm aware every trial in the US goes in a database with all the info gathered. Its online and open to the public. The trials I do are looking for side effects only, not if they work for what they are made for. I don't think this lady is correct on she is saying. All results are published.

[@davidherz9968]

You say it yourself "As far as I'm aware " and have you checked? Can you disprove her claims other than by saying you disbelieve her? Isn't this mostly to reassure yourself?

[@airkuna]

18th ??? are you serious???? have you ever had any bad or permanent side effect??

[@zes7215]

wrg

[@marciloni12]

Are you told what the drug is for? Do you have to have symptoms for the illness the drug is supposed to cure? Can any one be eligible as long as they are healthy?

[@adamjacobs7786]

My last attempt at leaving a comment here did not make it past the moderation queue, possibly because it had a link in it. I'm trying again without the link in the hope that it will appear this time. If you Google for "clinical trials zombie statistics stats guy" (without the quotes) then the article on my blog that I linked to should be at or near the top of the results. This is what I wrote: Unfortunately, there's a lot of misinformation in that talk. For a start, the statement that "only half of clinical trials have been published" is simply not backed up by evidence. It's probably true that in the last century publication rates were disappointingly low, but what Dr Lane fails to mention is that there has been a dramatic improvement in that over the last decade or so as the problems of non-publication have become more appreciated. Recent studies typically show clinical trial disclosure rates in the region of 80%. Of course 80% is still too low: it should be 100%. But 80% is also really not the same thing as "half", as claimed in the talk. More on these statistics here: [link redacted] For another thing, Dr Lane tells us that the regulators who make decisions about whether to license drugs lack access to the unpublished trials. That's simply not true. When pharmaceutical companies apply to regulators for a licence, they are required to submit details of all their trials, whether published or not. So even if trials are not published somewhere where you and I can see them, regulators still get to see them before they decide whether to license drugs or not. It's astonishing that Dr Lane doesn't know that. For "a charity concerned with the use and abuse of scientific evidence in public life", this kind of misinformation is really disappointing.

[@robertacowan6228]

What people don't realise is we have all been involved in clinical trials and continue to be. The results are plain to see - more allergies than ever before, and that is just the tip of the iceberg. You have to be truly interested in a healthy society. What is the price that many pay? 'The Dark Side Of Pharma' Learn the risk.

[@isabellebushnell3452]

I totally agree with you. This is ignorance. No wonder why only 12 percent of U.S. adults had proficient health literacy.

[@MilwaukeeWoman]

What about all the drugs people still take from the years publication was worse?

[@sukhmanicambridge]

I think there’s a growing awareness and a lot of people have lost confidence in this whole process. Where money is the driving force there’s bound to be biases and pharmaceutical companies seem to literally get away with murder.

[@zes7215]

wrr, cepuxuax, say any nmw s perfx

[@annfuller9044]

We've known about this kind of thing happening since the 1994 trials with SSRIs and this is pretty much a rehash that still has not been resolved. Greed and Money.

[@airkuna]

have anybody been in such trials??? have you ever had any bad or permanent side effect??

[@organization123]

Great talk! We strongly support it.

[@pongie884]

Understand for drugs which are currently being sold, adverse trial results should be published so that relevant parties can make an informed decision as to whether the drug should be prescribed to a certain patient population or not. However, for trials which did not reach the desired endpoint and the drug is not in the market, what is the incentive for the big pharma company to release these adverse results? without receiving payment to allow people to access this?

[@MilwaukeeWoman]

The incentive should be that they are allowed to stay in business.

[@ysvry]

great ted talk all science research should be open to the public, BTW still waiting for all of mengele's camp research papers!

[@prithvi6078]

But they never recommend this kind of videos. 30 million subscribers and 100 k views. They all don't want us to know the truth

[@CookedMeat]

So, any catchup reports for the current situation?

[@yahyaali658]

that microphone is tight or am i wrong

[@eduardosanzb]

she missed to explain the reasoning why are they hiding the information; what are the reasons/environmental situation/context that generates this practices. Would be nice to understand, so we can try to find a fix/leverage.

[@hayleyr.s1414]

Can someone tell me the exact name of drug? Is it lolkinaid or norkinaid?

[@MedschoolMom]

Wow, thank you Dr. Lane for shining a light on this important issue. Clearly withholding the results of a trial that could add vital information about the efficacy of a medication or treatment is unethical. I think a big contributor to this problem stems back to who is funding the research. Obviously a pharmaceutical company funding research on a medication wouldn’t want to release the results of a trial that indicates their drug doesn’t work. But not releasing that information is totally unethical. We have to find ways to make researchers much more independent from their funding sources so they aren’t biased in how they do the research and so they aren’t scared to release the results even if the results aren’t what the funder hoped. I think before we vilify all researchers we should keep in mind that some trials never produce results. This could be because the research team couldn’t find enough people to take part. Or it could be because the trial was stopped early for some reason so they don’t have enough information to get reliable results. Or maybe they ran out of funding. We should also consider that some studies may not be published because the researcher died or moved to a different position before sharing the results. Despite these considerations, there are definitely studies that can and should be released to the public but aren’t. It seems the FDA should do much more to demand the results of ALL trials performed on a drug, not just the trials the drug company selected because they paint the prettiest picture, before approving the drug. FDA officials need to know the full story and they’re not getting it. That’s unethical.

[@Frennypants]

Why are you not on linkedin

[@BandamameDkhar]

I would like to know the alternative methods of discovering new medicines that someone would like to proposed??

[@mara8456]

Not new methods, just not burying the results. ALL results should be available to everyone in a central repository. You have a problem with that?

[@Raiden-the-Goat32]

Maybe you could have the american people fund the drug trials and the richest get taxed the most. Also make law's preventing the drug company directly or indirectly influencing these studies. Then make it illegal for the drug company to influence the government into undoing these law's. Then make it to where it's illegal for the drug company to bride or by the researchers any gifts so they do not feel obligated to help the drug company. This would eliminate conflicts of interest out of these studies and keep them out. So in short make the studies privatly funded and make law's that make it illegal for the drug company to influence these studies or the government in regards to drug studies. Make the law's to where the drug company can not gift the researchers anything and do away with the drug company lobbying. The problem with these studies are conflict of interest related so if you do away with that you would fix the problem. One add in though make it illegal for the drug company to work in these private drug trials/studies.

[@OnionKnight541]

spot on.

[@hankpicard160]

This is very scary I'm about to sign out for clinical trial,, But they're saying I'm terminal and I don't know if I should do conventional or the clinical trials?

[@annieyummmm]

You should

[@sandyloowho5]

Hi Hank, what did you decide? it's a very difficult decision and you need to weigh the benefits and risks of each option

[@hankpicard160]

I decided to do alternative in Arizona at ENVITA medical Center, HUGE MISTAKE,,$70,000+ cash Because they don't take insurance and was the BIGGEST MISTAKE , My body will never be the same After their protocol,,,,,,Liars!!! Biggest MISTAKE ! I ever made in my life,,, it made me end up in the ER three times!!! Low dose radiation/ chemo,"GTF", this places is a MONEY SCAM and they pay people for good reports and now I can't use my arms neuropathy very bad,,, Loss 49 pounds and look like I'm 90 years old with no energy,,, Leaving Arizona, praying to God for another answer🙏🙏🙏

[@sb-dr5ve]

Immunocal will help you

[@leostack8495]

I got parkinson now ill be 65 april.1 my syptons are getting harder to deal with quickly i have 3 children and devorced question what do you know about turning glieal cells of the brain into neurons human trials i was into cbs in my 4yr honorably dis charged duty at a young age 17 yrs

[@kuroshiroOwO]

Where can I find a list of the sources used in this talk?

[@OurAmazingWorld]

White death. Culture is not Americans' friend www.ouramazingworld.org/politics/biden-mckenna-culture-not-your-friend

[@txdmsk]

Pick up the book Bad Pharma by Ben Goldacre. It explains this and other relevant phenomena in detail, with sources.

[@fmundo2]

Caution . . . look at the publication date of Goldacres book: 2006

[@diamonds4274]

I mean doesn't trial come w/ error? I agree that the numbers are way too high. Like you said people willingly apply knowing the consequences. So if the outcome is death who can you blame other than the "victim"? I agree with most of your argument though

[@fmundo2]

In point of fact I'm not at all sure that Trial participants "are prepared to" or in actual fact "think through" the consequences of bad outcomes in trials. If they did they''d pick up on the fact that many people who run trials DO NOT assume responsibility for care of participants after the trial has ended in those cases where there are "adverse" or bad outcomes. Instead, they point the victim to their own personal medical insurance company (which is a pretty shakey possibility) or sit back and wait to be sued. Faced with the prospect of 20 pages of small print, many trial candidates simply sign on the bottom line . . . Often they are counting on getting drug therapy which they are not allowed to take or otherwise can't get (afford) in a desperate attempt to get well.

[@kalebtomkinson7999]

Error is an essential part of trial to be sure! That does NOT excuse the omission of potentially fatal details either in approaching prospective test subjects or in publishing trial results. Just as buyers of cigarettes can see that their smokes are (by law) packaged with a warning of death by cancer, all concerned parties have a right to know if/when they are in any danger at the hands of pharm. companies and their products. Pharm. companies and the contractors they might hire to perform testing should be bound and enforced by law to provide insurance and compensation to their test subjects, and they should be required to ensure that all subjects are aware and capable of understanding all risks and benefits of their participation as test subjects. If this law is already in place then the power of enforcement is apparently lacking. Disclaimer: I'm not a professional, just a curious citizen:)

[@SofaaKing2]

The good news just keeps pouring in in this fine western civilization we've built.

[@claudevarner562]

Condemning the forum because of some bad results is lacking in perspective. Would you rather live elsewhere?

[@SofaaKing2]

Bad results are one thing, bad results that are ignored are another.

[@karikrome]

claude varner yes I would.

[@Bithiah333]

I wish people understood this. Even today, I can’t find the results of the human trials for this vaccine.

[@zes7215]

wrg

[@gksrblue21]

When she says these trials haven't been published, does she mean they haven't been submitted for peer review or that the results are just locked away in a vault somewhere? Because I agree that data from all clinical trials (failed or not) should be available for public access, but doesn't it make more sense to put more effort into publishing medicines that are proven to work? Maybe there could be a database that exists solely for trials that have yielded unsuccessful/inconclusive results just so that the information is out there for researchers, doctors, and patients to know what works and what doesn't. But going through the whole publishing process for something that doesn't work seems like a waste of time.

[@kalebtomkinson7999]

Good point! One benefit of fully publishing the trial results of failed meds is to help people be aware of what is dangerous, but somehow still on the market. Separation by data conclusions is a good idea to help consumers make efficient decisions. In order for consumers to make the most informed decisions, however, it will require more time and effort on the part of the consumer to research all relevant data and make a decision based on what they think works best for them. If trial results were separated by conclusion, it would be a potentially harmful form of censorship, which, as you just heard in the talk, is already happening in the form of misleading trial publishing. Disclaimer: I'm not a medical research professional, just a curious citizen:)

[@origamiandcats6873]

If potential volunteers by the millions boycotted the trials and publicized their opinions on the subject would that have an impact?

[@SupportTheLittleGuy]

I’m about to do a clinical trial for 10 days for Alzheimer’s

[@zairahernandez3231]

Are clinical trials safe?

[@SupportTheLittleGuy]

@@zairahernandez3231 sure hope so

[@SupportTheLittleGuy]

@@zairahernandez3231 the one I might do hasn’t been tested on humans yet 😬

[@sunkoko5018]

How are you after trials?

[@IgotJoshsYTchannelTerminated]

@@sunkoko5018 rip

[@vighneshs1444]

any new examples other than lorcainide, this example seems too old 1980 and even tamiflu which is also from 2014

[@stevelindsay3643]

THAT IS JUST AS BAD IF NOT WORSE TODAY, 2021.

[@nickidaisydandelion4044]

Corruption is raging world wide.

[@vishalPatil-ui3wb]

How can I find clinical trial in abroad I am india now due to some financial issue iam doing this plz help me

[@sharonfernandez120]

Look up clinical trials near me in India

[@nickheath9444]

...FDA's fault ?

[@Zanthous_]

There's a certain drug that isn't releasing their trial data right now. Ontop of the data being unclean in the first place.

[@vlnow]

This aged well.

[@tabathaterry2998]

I thought it was 25% get published.

[@yvettelouisemelech8510]

A very important talk in todays world 2021 the corona virus. Vaccines are produced very fast indeed I am most concerned

[@RAMADEVI-yr2jr]

it could never happen, without approvals how come a drug will be launched and sold for prescription

[@michaelm1053]

Can’t get over her saying medicine

[@floridaboyshii78]

Man so it is literally no help for me 😐 or my bones can they organize this please whoever reads this start petition or sum to reform this because so off

[@fly9wheel]

What?

[@ajninja1056]

bravooo

[@vantravisemoss9034]

Who eles is looking at this that does studies

[@Ryuzakari]

What is her alternative?

[@Sebastian-lv1dv]

Clinical Trials guidelines have changed. Yes, she talks about all the clinical trials that did not publish all data, but that happened more than 10 years ago. Guidelines have changed since then and now all data needs to be shared! Stop scaring people and misinforming them on a topic that heavily relies on volunteers.

[@ralphreece5123]

The guidlines have changed, that does not mean Pharma companies are complying.

[@MrSagar951]

Sebastian she is spreading negativity by explaining the things happened a decade back.

[@vishalPatil-ui3wb]

How to find trials in usa

[@J_Teriyaki]

I volunteered for a kidney disease trial but was told I have an enlarged heart. I now have 7,200 Australian dollars less to spend🍺 overseas BUT I'm breathing!. Cheers🥃

[@book_worm88]

medicine is full of lies !

[@korro5870]

Is it because the covid19 vaccine have proven us many of the things she is saying ?

[@evamarie5536]

I'm a bit confused as to why she said tamiflu isn't effective because I had swine flu and it DEFINITELY helped lol

[@fluffffyheart]

Are we still on clinical trial for covid vaccine?

[@korro5870]

Everyone seems to be looking towards that??? Did the Covid19 vaccine went through all these ?? Why are fully vaccinated people still ending up in the hospital ??? It makes me wonder big time ?

[@vintagevibes1974]

Emergency authorization has extremely loose guidelines.

[@TechnicalAli9767]

50% of clinical trials have never been published.

[@SheDMontford]

So why did they hide results from us about the c0v1d v4ccs???

[@cristallynette]

I work in clinical research and a lot of the information she’s giving is completely false.

[@MilwaukeeWoman]

So you publish every unfavorable study and you're employed directly by those whose profit will be lost if the study is unfavorable?

[@Dredziowata]

It's really hard for me to watch her holding the breath and unnaturally breath during this presentation ....

[@emperorbclarke7219]

I am ... X

[@wildmeoww2753]

I just want some $

[@cwagner122]

How the F#$& does this have 154k veiws in 2022

[@ParamjitSingh-vb6xb]

Presenting talk in the 20th century and giving example from the 1908's, it does not relate at all. The scenario has changed a lot after the thalidomide disaster and it keeps on improving day by day.

[@maryclaire2050]

This is just not true!!

[@711abc1]

Are you sure

[@1969billy1970]

Clinical Trials vs Missing Data DELIBERATE/UKNOWN AND ENTROPY

[@floridaboyshii78]

We are truly doomed and are dying

[@heartynoora2583]

From where did you get those information, they are a lies

[@marcosvidal2797]

too much anxiety, too distracting

[@himark666]

people just like hiding the dark things, it's the nature.

[@vesahalimi6660]

this is called " data protection " and it is done for the sake of innovator( the one that has invented e new drug),to compensate its work , so the pre clinical and clinical trials are protected from the government , data exclusivity is a period of 8 years , after 8 years a generic company can cross refer to the innovator's data.

[@anonkasper7937]

Can you please explain in detail about this data protection clause?.How data protection is even eligible as a condition? What do they mean by compensation for work?

[@learningprograms5516]

Where are human rights

[@Zebra663]

M sorry but this is nonsense. If a drug is fda approved, it is based on a scientific and sound framework. You are giving an example from 1980?

[@ReneMcLaren]

I hope you've realized now from the cov jabs that she's right.

[@piplux3805]

FDA? You trust FDA? 😂

[@joshuamabry1273]

This starts off with disinformation, she says that "medicines aren't being tested", this is false. Then she goes on to say that some results aren't published, this happens every day and there is no need to nor would it be practical to publish all results from every study. There would be too much cost involved to do this. It's a interesting topic and more information should be published and available to the public, but she is putting a spin of inaccurate information up front, and makes the rest of her point invalid (unfortunately)

[@eliyahuskoczylas4973]

No, there are also medicines that just aren't being adequately tested, and fictitious results and/or results of poorly designed studies that don't actually test are used to gain approval.

[@joshuamabry1273]

Eliyahu Skoczylas perhaps I'm not fully aware of everything that goes on in the rest of the world. I run a clinic in the US that performs clinical trials. We are very thorough in reporting all data. Drugs aren't prescribed by physicians without positive results being published. Granted, some studies have poor design, but nothing is perfect. Many sponsors strive to design studies that provide an opportunity for new drugs to prove themselves. I am aware of studies that end early because efficacy results are poor, but all safety data is published in real time. I can understand the speakers point that some data is not published, but it's privately owned and could be used in future studies for the company that funded the research. Those companies can't fund research if they give everything away. They need to have some proprietary information.

[@eliyahuskoczylas4973]

I'm presently consulting at a biomedical devices developer. I'm not on the testing side, but what I've seen reported by firms in the industry suggests a lot of cherry-picking; you don't get funding for reporting mixed or negative results, and the counter argument that "we're fighting Big Pharma" (because these are non-drug replacement therapies) leaves me a bit cold. From what I've seen about this whole debate, it seems that your clinic is in a minority, and deserves our respect. I understand about the needs of proprietary information being retained, but there is a concept in criminal law that if you are aware of a crime and fail to report it or prevent it, you are complicit. Having empirical data about potential harmful side effects and/or other dangers of use of a particular drug, certainly seems to me like criminal negligence at the very least. Knowing a drug may be harmful and allowing physicians to prescribe it anyway unawares is WRONG. And not sharing the data about what went wrong prevents researchers from finding out WHY - maybe the harmful side effects would be revealed to occur in only a specific sub-class of patients, but if no one reports on those "failures" then no one can figure that out, either.

[@karikrome]

Joshua Mabry it wouldn’t be practical and there’s no need to publish all results? It wouldn’t be very convenient for Pharma companies is more like it. Practical is not a justification, and a concern for cost at this level is ridiculous considering the scope of how much money Pharma brings in. You sound like a shill or a doctor getting kickbacks.

[@zes7215]

wrg

[@nl7247]

Who is she? What does she mean trials results kept hidden? Is she criticising the peer reviewers and journal publishers? She picks the facts out of many context to mix things up!

[@Ahmedali-xp6je]

100000 people damn

[@integralmath]

She begins with a false premise. For a scientist, it's shocking that she would begin her method will an ill-framed hypothesis for which she has bothered to collect no data and yet asks the audience to accept it as fact. She should really put out a survey to patients asking them: do you presume that the medications you have been prescribed are substances about which scientists know everything that can be known about whether it works? Do you presume that the medications you have been prescribed are substances about which scientists have substantial but nevertheless imperfect and incomplete knowledge about whether it works? That is, you will find that patients understand readily that physicians have incomplete knowledge about medications and know only somethings about them. You will find the person who believes that a physician knows everything there is to be known about any given medication is rare. Indeed, one of the chief complaints about physicians is that they have an air of god-like knowledge unrestrained by the fact that they lack such god-like knowledge. Patients are perfectly well aware that physicians have limited knowledge, but have an annoying habit of walking around as though it just ain't so. This arrogance is off-putting. In a talk about problems in science, one would think that the scientist here would not start out by posing a malformed hypothesis that is inconsistent with even a trivial survey of what patients think about physicians. One would, in this video at least, be entirely incorrect. Such a pity. Made all the worse by the fact that publication issues in the weaker sciences, like medicine, have substantial issues which require redress. Sadly, this way of proceeding is improper.

[@matthewperry2117]

Nuerolink

[@dr.mikeybee]

We support for-profit medicine with our tax dollars, but we don't actually get any rights in return for our tax dollars. Why? Because we're morons.

[@MrRomiBajwa]

⏰...🤓

[@pioXXi]

"people don't believe me, but it's true" oh well, thanks, I don't need sources or proofs, if she says it's true I'm ok with that, why not?

[@kasparweimer5144]

Nonsence

[@spruceguitar]

I am sorry, but this lady is very uninformed about clinical trials. She should not speak on a topic, which she understands so poorly herself.

[@marykozloski3288]

I just signed up for a trial for Crohns. Not for the money because I have suffered with it for 34 years. Diagnosed at 18 and have lived in and out of hospitals, surgeries so Im sorry I even started listening to her. I should only listen to people with M.D. after their name. I ened up with cancer from a drug called Remicade(obviously they didnt do enough trials) I thankfully live within an hour of Dana Farber and was successfully treated there. She's not making alot of sense to me. I am also a RN and do know that certain laws and regulations have to be put in place and these physicians aren't willing to lose their license. Im sure some things fall through the cracks, we are only human. It is expected. But I believe without trials, where do we go? There are all kinds of cures out there for certain diseases. She doesn't talk about those.

[@maryclaire2050]

She is grossly uninformed!!

[@zes7215]

no such thing as should or understand or poor or etc, cepuxuax, say, can say any nmw and any s perfect

[@tammyot]

Spying 🕵️‍♀️

[@1969billy1970]

IE CLINICAL COFFEE CUPS///IE K Cups

[@sarahli5255]

TED does not screen their speaker's profile or qualification? This lady seems have no idea on clinical trial and drug approval process at all