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Quantified self : une tendance de fond et quelques enjeux pour le marketing digital

Quantified self : une tendance de fond et quelques enjeux pour le marketing digital | Buzz e-sante | Scoop.it
Derrière ce terme anglosaxon se cache tout ce qui touche de près ou de loin aux outils et aux services permettant à chaque individu de mesurer ses données personnelles, de les analyser et de les parta...
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Buzz e-sante
Un autre regard sur le digital santé
Curated by Rémy TESTON
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Quels sont les vêtements connectés de demain ?

Quels sont les vêtements connectés de demain ? | Buzz e-sante | Scoop.it
VIDÉO - Gadgets ou enjeu du futur? Les objets connectés n'en finissent plus de se faire attendre. Pour patienter, voici une sélection de pièces d'habillement, du plus rocambolesque au plus prometteur.

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Une étude révèle des failles de sécurité sur les montres connectées

Une étude révèle des failles de sécurité sur les montres connectées | Buzz e-sante | Scoop.it
C’est une étude assez inquiétante qui vient d’être publiée par le groupe d’informatique HP. Sur 10 montres connectées analysées (leurs noms n’ont pas été communiqués), toutes ont présenté des défaillances plus ou moins importantes dans la protection des données de leur utilisateur. Des protection des données insuffisantes L’étude pointe du doigt la trop grande facilité
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Apadmi's 2015 Wearable Tech Study - Business Trends & Insights

Apadmi's 2015 Wearable Tech Study - Business Trends & Insights | Buzz e-sante | Scoop.it

A report to help the business community understand what the wearable technology industry is capable of, where it’s heading and what customers want.


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Surveys: 58 percent of UK patients, 72 percent of UK, French, or German docs have used digital health tech

Surveys: 58 percent of UK patients, 72 percent of UK, French, or German docs have used digital health tech | Buzz e-sante | Scoop.it

A couple of new reports from across the pond illustrate the ways doctors and patients are thinking about digital health in England, as well as in France and Germany. A new report from PushDoctor, a UK telemedicine company, shows that 58 percent of UK citizens surveyed have used some kind of health or wellness technology. And a report from healthcare marketing group Ipsos Health shows that 72 percent of the 131 primary care doctors interviewed in the UK, Germany, and France have already used or recommended at least one form of digital health technology with their patients.According to the PushDoctor report, 22.8 percent of patients use a smartphone, tablet, or computer to monitor exercise levels, 17 percent use such a device to establish BMI, 16.9 percent measure heart rate, 15.2 percent establish daily diet and calorie intake, 12.9 percent monitor sleep quality, and 5.1 percent share symptoms on social media to solicit friends’ opinions.


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Avec Iko, les enfants souffrant de handicaps peuvent aussi jouer aux Lego

Avec Iko, les enfants souffrant de handicaps peuvent aussi jouer aux Lego | Buzz e-sante | Scoop.it
Avec la prothèse Iko Creative Prosthetic System, les enfants en situation de handicap peuvent fixer des robots ou des vaisseaux spatiaux Lego au bout de leur bras artificiel. Ce nouvel appareil, compatible avec les jouets de la marque danoise, interagit avec les jouets grâce à une unité centrale programmable et à une série de capteurs. Développé par le designer colombien Carlos Arturo Torres, il a remporté début juillet le design awards remis par le site spécialisé dans la conception industrielle Core 77.
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SergePPlourde's curator insight, July 28, 9:42 AM

I love it when I see stories like this, where technologies enable people to go beyond their handicap

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Une pilule contre le mal du virtuel...

Une pilule contre le mal du virtuel... | Buzz e-sante | Scoop.it
La VR (Virtual Reality) vous rend malade ? Vous ressentez des nausées ou des vertiges pendant votre expérience immersive ? Découvrez Virmo, la pilule contre le « mal des sensations du virtuel » !
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Rise of Mobile Health Technology Brings More Data Analysis

Rise of Mobile Health Technology Brings More Data Analysis | Buzz e-sante | Scoop.it
The mobile health technology field has been expanding throughout the entire medical care industry within the United States. With the widespread use of the Internet, laptops, smart phones, and tablets became standard mobile devices to communicate and access relevant information among physicians, healthcare providers, and the patient community at large. As mobile health technology continues to advance, new developments are uncovered such as smart glasses, wearable monitors, and new telehealth solutions.

The Public Library of Science (PLOS) reports on the future of the mobile health technology field. One potential problem within the healthcare industry is the possibility of medical care inconsistencies and inequalities due to differential access of virtual and mobile health technology like telehealth platforms or wearable devices.

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Lancement du portail Monkinévoitrose - Buzz-esanté

Lancement du portail Monkinévoitrose - Buzz-esanté | Buzz e-sante | Scoop.it
LPG Systems met aujourd’hui à disposition des patientes atteintes d’un cancer du sein un nouveau portail d’information et d’échange : Monkinévoitrose.fr
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An algorithm that predicts the way drugs work in the body

An algorithm that predicts the way drugs work in the body | Buzz e-sante | Scoop.it
Columbia researchers have developed an algorithm to predict how drugs will interact inside an individual - potentially reducing side effects, and finding new uses for existing drugs.

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Hitachi Developed A Wearable Device That Can Measure Happiness

Hitachi Developed A Wearable Device That Can Measure Happiness | Buzz e-sante | Scoop.it

If you are happy and you know it… Do not bother doing anything because Hitachi is already aware of how you feel.The Japanese multinational conglomerate announced Monday it has developed a wearable device that can wirelessly measure whether a group of people is happy or not.While the formula for happiness–or at least how it is gauged–remains a trade secret, Hitachi says the technology works by having users wear a card-size device equipped with an acceleration sensor that monitors a group’s behaviour and sends data to cloud-based servers.


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Les objets connectés luttent contre le diabète

Les objets connectés luttent contre le diabète | Buzz e-sante | Scoop.it
Lutter contre le diabète avec les objets connectés, c'est désormais possible. Retrouvez ici un aperçu des principales initiatives et solutions disponibles.
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5 Things Doctors Should NEVER Post on Social Media

5 Things Doctors Should NEVER Post on Social Media | Buzz e-sante | Scoop.it

The popularity of social media has exploded in recent years with 31.24% of all web traffic now coming from social media platforms.  According to the New York Times, in April of 2015, the leading social media platform is Facebook with an incredible 1.44 billion users.

This immense popularity offers medical professionals some exciting opportunities to improve their patient interaction and profile.  Some of the most constructive ways in which physicians can utilize social media include:

Better engagement with patients. Answering general questions, responding to feedback, and sharing useful medical resourcesPromoting medical servicesBuilding a stronger profile within the local communitySpreading important information about medical conditions, new treatments, and research findings

However, you should also be aware of the potential hazards of using social media.  Here are 5 things which doctors should never post to social media.

1.  Inaccurate Medical Information:  When using social media, there are dozens of medical headlines thrown at users each day.  The related articles are often full of inaccuracies and distortions of medical research.  Medical professionals should avoid republishing, sharing, “liking,” or “retweeting” news stories about medical treatments unless they have completely read the story and have verified its accuracy.  If a user finds inaccurate medical information through your social media channel, it can reflect very poorly upon you and your practice.  Medical jobs rely upon the distribution of accurate information.

It is important for clinicians to realize that millions of people use the Internet to find out more about their condition.  Pew Research estimates that more thanone-third of Americans have used the Internet to discover what medical condition they or someone else might have.  Current and potential patients will find your social media profile and they will assess its content and accuracy.

2. Do Not Post Anything that Violates Patient Confidentiality: The American College of Physicians recommends that doctors be especially aware of the implications for patient confidentiality when using social media.   There have been cases of physicians losing their medical license after posting an image on social media that violated patient confidentiality.  Even posting an image of a skin rash can be considered a violation of patient confidentiality, so be very careful.  Always obtain permission from the patient in writing if you intend to use an image featuring any body part.  Avoid talking about specific patients at all on social media unless you have permission to do so.  Even if there is no chance that a patient could be identified by what you write on social media, it is considered unprofessional to discuss the specifics of their condition.

Be careful when taking photos of yourself while in your practice.  There have also been cases where medical professionals have accidentally included the image of the patient behind them while taking a ‘selfie’.  Make sure there are no patient health records on display when taking photos in the medical practice and no patients are included in photographs unless they want to be.  All professionals in medical jobs and doctors office jobs (nurses, general practitioners, receptionists, surgeons) should keep patient confidentiality in mind when posting to their social media streams.

3. Your Personal Information:  You should avoid posting any personal information to your professional social media streams.  Posting an inappropriate comment, image or video can tarnish your professional reputation.  It also risks a breach in the patient-doctor relationship if patients know too much about your personal life.  Put it this way — when you are talking to your patients in a clinical setting would you ever tell them you got too drunk last Friday and had a great time?

The American College of Physicians (ACP) and the Federation of State Medical Boards (FSMB) recommend that doctors create separate social media accounts for their professional and personal lives.  They also suggest that the professional profile be more visible than any personal one.

 Medical professionals should assess if the information they put on their social media profile suits the needs of their clients.  If you are a general practitioner, it is unlikely that posting about your personal life would be of any benefit to your patients.  Always think about the kinds of information your patients and community are interested in.  Other staff in doctors office jobs including receptionists and managers should be also careful about the contents of their social media feed.

 4. Opinions on Controversial Issues:  While using the Internet, many people feel more opinionated and free to speak their mind.  They believe the virtual world is not connected to the real one!  Unfortunately what you say in the virtual world will most definitely have repercussions in the real world.  Any controversial topic or “hot button” topic should be avoided as much as possible,including anything to do with religion, politics, racism, abortion, and gun control.  You may see patients leave your practice, get confronted by your current patients, or dissuade members of the community from becoming your patient if they find out that your positions on these volatile issues are diametrically opposed to theirs.

5. Complaints or Rants:  Even if you are having a really bad day, it is unprofessional to use social media platforms to complain or rant about your situation.  Even if you have a horrible patient or an annoying colleague, don’t use social media as a way to blow off some steam.  Everything you write on social media may one day come back to haunt you.  If you complain about your boss, the next time you change jobs, a prospective employer might find the comments online.  A patient might realize that you were complaining about them on social media!

*Remember the golden rule of using social media as a physician — only post information that your patients and community will find useful.  Be professional and remember that social media posts have real world outcomes*.


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Télémédecine: l'ARS Midi-Pyrénées lance une démarche de cartographie des besoins et des moyens

Télémédecine: l'ARS Midi-Pyrénées lance une démarche de cartographie des besoins et des moyens | Buzz e-sante | Scoop.it
Premier site français d’information en continu sur les technologies de l’information et de la communication (TIC, NTIC) dans la santé - TIC santé
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Survey: 59% of Healthcare Orgs Lack Digital Health Strategy -

Survey: 59% of Healthcare Orgs Lack Digital Health Strategy - | Buzz e-sante | Scoop.it
59% of healthcare organizations are either behind schedule with their digital health strategy or have no digital health strategy currently in place.

Via Richard Meyer
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Rescooped by Rémy TESTON from Santé, eSanté, mSanté, santé numérique, Quantified Self et télémédecine... Toute l'actualité sur la santé de demain (en français)
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Hackathons et autres challenges en santé : stop ou encore ?

Hackathons et autres challenges en santé : stop ou encore ? | Buzz e-sante | Scoop.it
Les hackathons, challenges ou ateliers en e-santé fleurissent, mais sont-ils utiles ?

Via Celine Sportisse
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Mehdi MARZOUK's curator insight, July 31, 9:15 AM

Un article pedagogique sur les sessions d'innovation collaboratives qui permettent aux entreprises de travailler autrement et de connaître des startups même lorsque les résultats directs ne sont pas au rendez-vous 

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Gustave Roussy lance son nouveau site web - Buzz-esanté

Gustave Roussy lance son nouveau site web - Buzz-esanté | Buzz e-sante | Scoop.it
L’Institut Gustave Roussy poursuit sa transformation digitale avec le lancement d'une nouvelle version de son site web gustaveroussy.fr
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Les Éditions Hermann annoncent la parution, le 21 septembre 2015, d'un ouvrage sur la santé connectée

Les Éditions Hermann annoncent la parution, le 21 septembre 2015, d'un ouvrage sur la santé connectée | Buzz e-sante | Scoop.it
Publication de "Santé connectée : demain, tous médecins ? Une révolution avec les professionnels de santé, pour les patients"
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J-L Navarro's curator insight, July 30, 5:48 AM

Tous médecins ? Non, sûrement pas (et c'est peut-être préférable !) mais tous plus attentifs à notre capital santé et celui de nos proches.

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Voici le patch intelligent qui va surveiller votre santé - SciencePost

Voici le patch intelligent qui va surveiller votre santé - SciencePost | Buzz e-sante | Scoop.it
Une start-up américaine a mis au point un capteur de santé connecté capable de mesurer soi-même son taux de glucose. Une partie de la somme nécessaire au projet a déjà été versée, laissant penser à une issue très sérieuse. Depuis 2012, la société Sano Intelligence basée à San Francisco travaille sur la fabrication d’un « appareil …
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Quintiles lance l’application Infosario One - Buzz-esanté

Quintiles lance l’application Infosario One - Buzz-esanté | Buzz e-sante | Scoop.it
Le fournisseur de services biopharmaceutiques Quintiles lance l’application mobile Infosario One pour favoriser l'accès aux données cruciales des études cliniques.
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Quand les technologies de la santé mettent l’accent sur la collaboration | L'Atelier : Accelerating Business

Quand les technologies de la santé mettent l’accent sur la collaboration | L'Atelier : Accelerating Business | Buzz e-sante | Scoop.it
Les professionnels se sont donnés le mot. En matière d’e-santé, la collaboration est désormais l’objectif numéro 1. Et les start-up sont les premières à se lancer sur ce credo.
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Why Patient Testimonial Videos are a Powerful Tool for Your Practice

Why Patient Testimonial Videos are a Powerful Tool for Your Practice | Buzz e-sante | Scoop.it

We all know that written testimonials can play a crucial role for patients seeking your medical or dental services – that’s why getting positive patient reviews on Yelp and other online review websites is so important to your practice. However, asking your patients to sit down for a few minutes to film a short video testimonial might be one of the best ways to reach out to new patients and let them know (in your current patients’ own words) what they can expect from you and your practice. Better yet, Google might even reward you for it – videos often add informative, quality content to your site that caters to the viewer, which can help boost your site’s ranking. Adding interesting videos for visitors to watch also means they will likely spend extra time on your site; another factor that can potentially boost your website’s search engine rankings. So how do you get started? To help you out, we have created an infographic with some handy tips:

 


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Most Patients Want to Self-Manage Healthcare Online - DbtMobile, le blog

Most Patients Want to Self-Manage Healthcare Online - DbtMobile, le blog | Buzz e-sante | Scoop.it
See on Scoop.it – Mobile Health: How Mobile Phones Support Health Care Une étude d’Accenture sur 1110 américains montre que la majorité des patients souhaitent gérer leur sante en ligne   See on healthworkscollective.com Accenture released a survey and infograpic … Continue reading →
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Compassionate Use, Clinical Trials, and Social Media

Compassionate Use, Clinical Trials, and Social Media | Buzz e-sante | Scoop.it
“Patients have demanded and have taken a place at the table,” says Richard Moscicki, deputy center director for science operations at FDA’s Center for Drug Evaluation and Research. “So we recognize that, and we are committed to trying to figure out how to incorporate that into our own internal thinking.”

Though not yet an issue for compassionate use, it is important to be cautious about patients or families of patients becomingproxies for drug companies that want to sell expensive medicines.
posted by a lungful of dragon at 2:25 PM on July 15 [3 favorites]



Thanks for posting this. I was impressed that they included the pharma's perspective, and the reasons why a company might refuse to either create a compassionate use program, or offer a drug to someone who might need it. It's easy to demonize pharmaceutical companies, especially when lives are on the line. Harder to consider deeper issues, tho. The patients have nothing to lose, and everything to gain. Compassion and empathy and morality all say, give them the drugs and hope for the best. But still, it's not that easy. There are other ramifications. 
There are reasons companies are reluctant to adopt compassionate use programs. They can cost millions to establish. While the programs’ intentions are noble, a dollar spent underwriting the compassionate use of a drug is a dollar diverted from developing the drug for future patients — a choice favoring one individual over others.

Companies also assume significant risks, many of which the public is unaware of, with expanded access programs. The FDA wants to be informed of all serious side effects thought to be linked to a drug provided via compassionate use. On the other hand, any hints that the drug works are not taken into account during review.

This makes sense, since efficacy needs to be measured carefully in clinical trials. Still, it’s hard to imagine any other industry where a manufacturer is willing (or pressured) to release a prototype in an uncontrolled setting, knowing that its regulators are closely watching for instances where that product causes harm.

If major side effects surface via compassionate use, it’s much harder to understand why the side effects occurred, since these patients tend to be much sicker. And this can mean trouble with the FDA.

That’s what happened last year to Los Angeles-based oncology drug company CytRx Corp. after the death of a patient who had obtained the company’s cancer drug via compassionate use. The FDA ordered all of the company’s clinical trials of the drug to be stopped. The hold, which only meant new patients could not be enrolled, lasted two months.
And that's a really important point. For the sake of one life, how many others will lose out because an untested drug is being judged by the FDA as if it had been used in controlled study settings, with a carefully screened patient who is not at death's door? Can't blame the FDA for being supremely careful, either. They have a protective responsibility to fulfill. 

And yet when someone's life literally may depend on being able to obtain experimental medicine, don't we have a moral obligation to let them at least have that chance?

Lots to consider here.
posted by zarq at 2:27 PM on July 15 [9 favorites]



And yet when someone's life literally may depend on being able to obtain experimental medicine, don't we have a moral obligation to let them at least have that chance?

As an addendum to this question: paid for by whom? Insurance sure won't cover it. And as much as every single one of us loves to hate on Big Pharma, there are experimental drugs coming from Mid Pharma and even Tiny Pharma.
posted by DarlingBri at 3:00 PM on July 15 [2 favorites]



And yet when someone's life literally may depend on being able to obtain experimental medicine, don't we have a moral obligation to let them at least have that chance?

Also, what if an experimental drug shortens a person's life rather than lengthening it? What if the patient lives longer, but is in such extreme pain that they take their own life? What if the drug causes the patient to lose their mind to the point where they go to the mall and start shooting people. Are the patients (and their families) willing to sign a ironclad release of indemnity? Can they even legally do so? 

Seems to me the drug companies would need a 100% guarantee against any sort of litigation before getting on board with this.
posted by sideshow at 3:27 PM on July 15 [2 favorites]



Idemnity is a standard part of signing up for experimental drugs and trails, yes, sideshow.
posted by DarlingBri at 3:57 PM on July 15



Can't blame the FDA for being supremely careful, either. They have a protective responsibility to fulfill. 

Yes, I can too.

The incentive structure for the FDA is all out of balance. If a drug is rejected which could save a lot of lives, and thus those people all die, the FDA doesn't get blamed. But if a drug gets approved and a handful of people get sick from it and/or die, the FDA gets roasted. So the incentive for the FDA is to keep saying "no" until they have absolutely no excuse for not saying "yes".

From the FDA's point of view, better that 1000 people die untreated than that 1 person die from taking the drug. They don't get blamed for those 1000 people, but they would be blamed for the 1.

I personally have suffered because of that. I have a pretty serious genetic disease and none of the standard treatments help me. 10 years ago I got into a clinical test of a new drug, and it was a miracle. I felt better than I had in years.

Then the test ended, and I couldn't get any more of it. Meanwhile, the FDA rejected the drug because it caused some relatively minor side effects in a toxicology test involving beagles.

My disease has largely destroyed my life by this point. If I could have gotten that drug for regular use, I'd be able to hold down a job, make friends with people, and live something like a normal life. But I can't, and I don't do any of those things.

What I'd like is for Congress to reject "First, do no harm" in favor of "If the overall result of approving the drug is better than rejecting it, then approve" standard for the FDA. I vote in favor of the 1000 over the 1.
posted by Chocolate Pickle at 4:29 PM on July 15 [8 favorites]



Like Chocolate Pickle, I have a debilitating, incurable genetic condition. I have gone to real extremes to get off all medication and use diet and home remedies to manage. At one point, what was basically a non drug treatment got denied because some people got lung bleeds from it in the trial. This treatment was similar to one of the home remedies I used for a time. I ended up emailing the recipe to a sick friend who had really been hoping for something new. I took my website off the web because I was getting so much shit off of people about "endangering" people's lives with my "quack" remedies. The reality is that my condition is very deadly and doctors do not even try to cure you. 

I have gotten so much flack from people over the choices I made and for trying to help people and I am really burned out and reluctant to stick my neck out these days. But it took a lot of years to get there because I felt NOT trying to share what I knew was tantamount to standing idly by and letting people die slow, gruesome deaths unnecessarily. I mean, there is a reason my condition is called a dread disease: because what it does to you is horrifying.

So, while I wish there were other things being researched -- like what nutrition can do, which has had a really dramatic impact on my life -- I also think our current approach to drug approval for really horrible conditions is extraordinarily callous and I do not know how people can sleep nights when they are de facto denying hope to a lot of people who are suffering so terribly. I mean, if you did this to me to extract political information, it would violate the Geneva Convention. But if you do this to me by cavalierly turning your back on me, well, sucks to be me. I should have had the good sense to be born with better genes. Not your problem.

I am somewhat surprised it doesn't result in violent assault at times on someone representing the establishment/system/whatever. Because it really is a hugely hard thing to ask a really sick person to politely accept -- that we should quietly die a gruesome death and not make a stink while you make sure it will not have side effects. For some of us, we would be happy to live long enough to have to suffer the side effects and worry about solving them.

I liked how well rounded and even handed the piece was. But, seriously, for some people, this process amounts to politely torturing us until we die of it while denying us relief. And I wish people making the rules had a better grasp of that. I wish they really understood that. Really and truly.
posted by Michele in California at 5:26 PM on July 15 [2 favorites]



I think it's less about callousness and covering one's ass (individual or institutional) and more about the fact that training for ethical treatment of human subjects is literally all about Nuremberg and that the Hippocratic oath starts with "primum, non nocere".
(Disclosures: I have cancer, an illness on the critical care insurance Dread Disease List. I am also a medical researcher. I work in Australia so none of my current work is directly regulated by the USFDA but I have collaborators whose work is.)
posted by gingerest at 6:56 PM on July 15 [1 favorite]



Gingerest, no, it's all about Thalidomide.

Thalidomide was a tranquilizer which was approved for use in Europe, but not in the US because the FDA was dragging its heels. Doctors in Europe started prescribing it to pregnant women, and soon there were a lot of horribly deformed babies.

And the FDA learned a lesson from that -- delay is good. Haste is bad. We will make sure we never have a Thalidomide in the US.

And they have made sure, but the consequence of that policy is to abandon people like me, and the kids who are the subject of this post.
posted by Chocolate Pickle at 8:54 PM on July 15 [2 favorites]



The push for open access to experimental drugs is being led (and funded) by one right-wing think tank, the Goldwater Foundation, which opposes all FDA regulation.

Make no mistake -- this is a deliberate effort to end the use of science in approving or rejecting drugs.

Does that seem extreme? Look at it this way. The argument is, "people are dying, we must give them a chance to try drugs." But nearly all significant drugs are for potential fatal diseases. (What are the exceptions? Acne, viagra, headaches?) An exception for terminal diseases is a near-universal exception.

Good science requires clinical trials, first to make sure there are no major (disproportionate) side effects, and then for efficacy. It is human nature that anyone facing death will try an experimental drug, no matter how vague the hope or severe the side effects. Clinical trials will be impossible -- why would you take the chance of being in the placebo group, when you can just ask for the real thing? And that is precisely the goal. To eliminate the role of science and regulation.

Companies will then be able to release any drug instantly ("for compassionate reasons") and profit immediately, without the annoying delays to avoid side effects or worthless expense. They won't be liable for deadly side effects because people signed waivers.

"The right to try" is a very alluring slogan, but it's more like "The right to try dangerous and ineffective drugs."
posted by msalt at 12:10 AM on July 16 [4 favorites]



It is human nature that anyone facing death will try an experimental drug, no matter how vague the hope or severe the side effects. Clinical trials will be impossible -- why would you take the chance of being in the placebo group, when you can just ask for the real thing?

So, your proposed solution to the ethical difficulties involved in trying to empirically determine the efficacy (or lack thereof) of potentially life-saving drugs is to incentivize the terminally ill to participate in placebo-controlled trials by implicitly threatening them with otherwise certain death?

An exception for terminal diseases is a near-universal exception ... They won't be liable for deadly side effects because people signed waivers.

If you're talking about a compassionate use exception for people with terminal diseases who have exhausted other avenues of treatment, then anyone who might potentially encounter those deadly side effects would be someone who would have died anyway had the experimental treatment been withheld, right?

"The right to try" is a very alluring slogan, but it's more like "The right to try dangerous and ineffective drugs."

That misleading, though; the drugs in question aren't known to be ineffective and dangerous, they're drugs of unknown or uncertain efficacy and safety. If they were already known to be ineffective, then there would be no point in conducting trials at all. People want to take them because they might work. (I do actually think that people should have the political right to try even known-ineffective drugs, as a matter of bodily autonomy, but it's not necessary to invoke such a right in this case.) 
posted by polychora at 6:13 AM on July 16



Chocolate Pickle: Thalidomide was a tranquilizer which was approved for use in Europe, but not in the US because the FDA was dragging its heels. Doctors in Europe started prescribing it to pregnant women, and soon there were a lot of horribly deformed babies.

Just to clarify for anyone who would like more info....

Thalidomide was originally developed as a medicine for respiratory infections. However, researchers also found it to be an anti-emetic (anti-nausea/vomiting) drug. Three years after it was released to market, the German company that developed it started advertising it as an OTC anti-morning sickness medication for pregnant women. 

Within a very short time span, between 5000 and 7000 babies were born with teratogenic deformities in Germany. Only 40%survived. Those that did often had severe internal and/or external deformities. "Flipper-like" arms. Missing limbs. Heart / Cardiac deformities. Blindness. Deafness. Intestinal problems. The drug also caused countless miscarriages. 

But by then thalidomide had been exported to other countries, marketed as a sedative and anti-morning sickness medication. Somewhere around 10,000 babies were born malformed worldwide. And of those, only 50% survived. But estimates of how many babies died worldwide (including in Germany,) range from ~15,000 to ~80,000. 

Canada literally just came to a financial settlement with 92 thalidomide survivors two months ago.
"In Canada, free samples were distributed to doctors between 1959 and 1961 and given to expectant moms even before the drug was approved by federal regulators in April, 1961. By then, strong evidence was already emerging that thalidomide was causing miscarriages and birth defects. Yet the drug, sold under the brand names Kevadon and Talimol, remained in Canadian pharmacies until May, 1962, fully three months after it was banned in England and Germany.

Thalidomide’s Canadian distributor, William S. Merrell Co., made payments to parents who made a fuss, about $10,000 each, to buy their silence. Thanks to national health care, the drug was distributed free to patients."
In hindsight, the FDA was right to drag its heels. 

Chocolate Pickle: And the FDA learned a lesson from that -- delay is good. Haste is bad. We will make sure we never have a Thalidomide in the US.

Yes. Also, the FDA wasn't the only regulatory agency (of pharmaceuticals) to learn that lesson. Many did, worldwide. Worth noting that it was public backlash which forced thalidomide off the market in Germany and other countries. Regulators had to be pressured into action. And public backlash and horror over Thalidomide babies and deaths then pushed those same regulatory agencies into more closely scrutinizing and standardizing stage 3 drug testing.
posted by zarq at 6:36 AM on July 16 [3 favorites]



‘I have some friends who are worse than I am. Are you going to get them on the drug too?’ 

I swear, sometimes I think we'd all be better off if kids ran the world.
posted by prepmonkey at 7:47 AM on July 16 [2 favorites]



To try to be more clear about the point I was trying to make: Lung bleeds are really common with my condition. There is a topical inhaled treatment that was being tested for its ability to help prevent lung infections, and some kids got lung bleeds. Rather than saying "okay, if it causes bleeding, discontinue use" or even "this drug is approvef for adults only for the time being", they just denied it entirely.

The current life expectancy for my condition is 37 in the U.S. It accounts for something like half of all pediatric lung transplants and I think a third of adult lung transplants. In order to get listed for transplant, you have to first lose the majority of normal lung function. The mechanism for this loss is repeated infections that eat your lungs away, leaving them with big holes.

So they are de facto denying all people with this condition a means to reduce infection because some of them might get a lung bleed from the treatment. It is cheap, effective and not really a drug. It is a simple sugar. I used to make a chemically similar solution with xylitol and sterile water and nebulized it to help me stay out of the ER and off antibiotics. It was dirt cheap, very effective, and lacked the horrendous side effects of most of the drugs I was on.

This makes a lot more sense to me as a treatment than the strong drugs with horrible side effects that are currently the standard treatment. One of the antibiotics we get prescribed is known to cause tendons to rupture. Another common issue is c. dif. infections, the result of using high levels of antibiotics. Getting c. dif. can result in having your colon surgically removed.

So maiming us with antibiotics is a-okay. But the possibility that some folks will get lung bleeds and maybe should not use this new therapy is a deal killer and no one gets to use it.

I just cannot wrap my brain around that logic. It seems insane to me. I just cannot understand how you make that conclusion if you know anything of substance about CF.
posted by Michele in California at 10:28 AM on July 16



the drugs in question aren't known to be ineffective and dangerous, they're drugs of unknown or uncertain efficacy and safety.

Sometimes. People use all kinds of ineffective, dangerous remedies. I got an ad for colloidal silver just today. That's why quackery is illegal. Worse yet, people who make money off quack remedies have a direct financial incentive to scare people, confuse the issue and attack and mislead about medically proven medicines. (Joseph Mercola for example).

But either way, the drugs will remain unknown and uncertain unless there are double-blind, controlled studies. And letting all terminal patients take whatever drug they want, will instantly end double-blind controlled studies. That is in fact the goal of the Goldwater Institute.

 


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Le Top 10 mondial des laboratoires pharmaceutiques en 2014

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