If you were an allergy researcher ...

[LinksEtc]

"The Importance of Open Access: An Interview with Patient Advocate Graham Steel"
http://blog.patientslikeme.com/2012/07/09/the-importance-of-open-access-an-interview-with-patient-advocate-graham-steel/?utm_content=buffer25cae&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer

"In the past six years, we've found that more and more patients are trying to access research studies written about them, including studies where they were participants. In addition, they are increasingly capable of understanding them. Yet closed access is locking them out of better understanding their conditions and their choices."

-----------------------------------


Tweeted by @ESchattner

"A New Way to Think About Conflicts of Interest in Medicine"
http://www.nytimes.com/2015/09/01/upshot/a-new-way-to-think-about-conflicts-of-interest-in-medicine.html?smid=tw-share

Good science is how we avoid fooling ourselves, even when we have incentive to do so, financial and otherwise. The true merits of a study stem from its design and methods, so long as they are fully and transparently reported — and there are many ways we could do a better job of that.

-----------------------------------


Tweeted by @subatomicdoc

"A Rough Guide to Types of Scientific Evidence"
http://www.compoundchem.com/2015/04/09/scientific-evidence/?utm_content=buffer1781b&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer

You might think science is science, but some evidence is ranked higher in the scientific community than others, and having an awareness of this can help you sort the science from the pseudoscience when it comes to various internet claims.

-----------------------------------


Tweeted by @tessajlrichards

"Justifying conflicts of interest in medical journals: a very bad idea"
http://www.bmj.com/content/350/bmj.h2942

A series of articles in the New England Journal of Medicine has questioned whether the conflict of interest movement has gone too far in its campaign to stop the drug industry influencing the medical profession. Here, three former senior NEJM editors respond with dismay

-----------------------------------


Tweeted by @afrakt

"Revisiting the commercial-academic interface in medical journals"
http://www.bmj.com/content/350/bmj.h2957?etoc=

we should encourage all medical journals to separate the functions of evidence generation from those of appraisal

&


"Clinical trial data for all drugs in current use"
http://www.bmj.com/content/345/bmj.e7304

As Ben Goldacre says in the introduction to his new book Bad Pharma, "Drug companies around the world have produced some of the most amazing innovations of the past fifty years, saving lives on an epic scale. But that does not allow them to hide data, mislead doctors, and harm patients."

-----------------------------------



Might be a good place for this link ...

Re: FDA



-----------------------------------



Re: Desensitization Programs in the US -- OIT SLIT SCIT



-----------------------------------


You know, a while back I saw an allergist on twitter say something (seemed to me to be a bit sarcastic) about how they all must be "bought".  I couldn't help but wonder if he had recently been reading some of our FAS threads ... but, of course, I did not engage ... but I will say it here, in case it's not clear ... I do think that patients have every right to think about and ? bias & potential conflicts of interest.  These seem to be issues that require humbleness, not defensiveness or mockery.


-----------------------------------




I thought you guys were starting to get bored with this thread  ... and being that I'm not really a researcher, I figured it was time to stop ....

but we can keep it going if you want.   

[guess]

Out of habit I follow your filing system.

[LinksEtc]

Out of habit I follow your filing system.

I stuck this thread in my anchor thread (stickied in main)
Threads we don't want to lose track of


This way, it will be easy for you to find if you should want to add to our researcher adventure in the future.


----------------------------------------------



Tweeted by @DrAseemMalhotra

"Medical journals and industry ties"
http://www.bmj.com/content/349/bmj.g7197

Transparency remains essential, but it isn't sufficient to eliminate bias or perception of bias.

We believe this risk of bias is particularly important for clinical educational articles that are designed to guide patient care, when authors' biases may be less visible to general medical readers.

From next year our clinical education articles will be authored by experts without financial ties to industry (box).

----------------------------------------------



Tweeted by @rvaughnmd

"The Capabilities Your Organization Needs to Sustain Innovation"
https://hbr.org/2015/01/the-capabilities-your-organization-needs-to-sustain-innovation?utm_source=Socialflow&utm_medium=Tweet&utm_campaign=Socialflow

After studying masters of organizational innovation for over 10 years, we've identified three key activities that truly innovative organizations like Pixar are able to do well. First, the people and groups in them do collaborative problem solving, which we call creative abrasion. Second, they try things and learn by discovery, demonstrating creative agility. Third, they create new and better solutions because they integrate existing ideas in unanticipated ways, practicing creative resolution.

----------------------------------------------



Tweeted by @pnatarajanmd

New free @nature collection: Statistics for biologists (nature.com/collections/qg...) - blogs.nature.com/ofschemesandme... @NatureBlogs pic.twitter.com/z7FlousvgY

---

http://www.nature.com/collections/qghhqm


"Statistics for biologists – A free Nature Collection"
http://blogs.nature.com/ofschemesandmemes/2015/02/09/statistics-for-biologists-a-free-nature-collection

Irreproducibility issues affecting basic research in biology can be traced to a variety of common causes. One of them is the misguided use of statistics.

----------------------------------------------



Tweeted by @hildabast

Gr8! Free @JohnsHopkinsSPH online courses: statistics coursera.org/course/statrea... & systematic reviews coursera.org/course/systema... HT @lgcuervoamore

https://www.coursera.org/course/statreasoning

https://www.coursera.org/course/systematicreview


----------------------------------------------



Tweeted by @russpoldrack

"Opinion: Reproducible research can still be wrong: Adopting a prevention approach"
http://www.pnas.org/content/112/6/1645.full

To maintain the integrity of science research and the public's trust in science, the scientific community must ensure reproducibility and replicability by engaging in a more preventative approach that greatly expands data analysis education and routinely uses software tools.

----------------------------------------------




Tweeted by @ResearchMark

https://mobile.twitter.com/ResearchMark/status/563806393824972800/photo/1

[LinksEtc]

Tweeted by @IgECPD

#AAAAI15 Keynote Speech: The Reproducibility Crisis in Science: Causes and Consequences with Dr J. Ioannidis from @StanfordMed

-----------------------------------


I found this ....

"John Ioannidis has dedicated his life to quantifying how science is broken"
http://www.vox.com/2015/2/16/8034143/john-ioannidis-interview

Medical research is in bad shape. Fraud, bias, sloppiness, and inefficiency are everywhere, and we now have studies that quantify the size of the problem.

In his seminal paper, "Why Most Published Research Findings are False," he developed a mathematical model to show how flawed the  research process is.

-----------------------------------


Tweeted by @ckeet

Ionnidas arguing that much of innovation happening outside of medical lit #AAAAI15

-----------------------------------


I found this ....


"JAMA Questions Stealth Science"
http://www.qmed.com/news/jama-questions-stealth-science

Although Theranos claims it has reinvented lab testing, making it possible to run hundreds of diagnostic tests using a single drop of blood, the article in the Journal of the American Medical Association (JAMA) points out the lack of peer-reviewed studies related to its technology.

What about overdiagnosis, false-positives, or the possibility of an uptick in iatrogenic causes?

Titled "Stealth Research: Is Biomedical Innovation Happening Outside the Peer-Reviewed Literature?" the article by John P.A. Ioannidis, MD

[LinksEtc]

Tweeted by @dropeik

RT @DrBinks: Scientists respond to BMJs recent string of ad hominem attacks on Industry funded science | The BMJ... fb.me/6FfbatfMs

Sugar: spinning a web of influence
http://www.bmj.com/content/350/bmj.h231/rapid-responses


-----------------------------------------------


Tweeted by @eliza68

"Journal Science Releases Guidelines for Publishing Scientific Studies"
http://www.nytimes.com/2015/06/26/science/journal-science-releases-guidelines-for-publishing-scientific-studies.html?smid=tw-share&_r=1

But the new guidelines — called TOP, for Transparency and Openness Promotion — represent the first attempt to lay out a system that can be applied by journals across diverse fields.

-----------------------------------------------



Tweeted by @edyong209

Every week, I scour the internet for good reads (mostly science) so you don't have to. Here's this week's assortment. phenomena.nationalgeographic.com/2015/02/21/ive...

http://phenomena.nationalgeographic.com/2015/02/21/ive-got-your-missing-links-right-here-21-february-2015/?utm_medium=twitter&utm_source=twitterfeed

-----------------------------------------------


Tweeted by @HeartSisters

Big food, big pharma: is science for sale? bmj.com/content/350/bm... A: YES! (corrected link) ethicalnag.org/2012/06/30/big... @SusanMolchan @StuartBuck1

---


"Big food, big pharma: is science for sale?"
http://www.bmj.com/content/350/bmj.h795

We have grown accustomed to allegations of conflicts of interest, biased research, and manipulative marketing on the part of the drug industry.

To gain public cooperation the science must be above reproach.

---


"Big Tobacco's lessons for Big Food"
http://ethicalnag.org/2012/06/30/big-tobaccos-lessons-for-big-food/

There have been a number of articles written about how the tobacco companies bought silence, particularly from black organizations.

Industry, of course, has the right to promote its positions, Brownell and Warner remind us, but when money flows through such organizations, their nature and intent are not apparent to the general public.

-----------------------------------------------


Tweeted by @SeattleMamaDoc

https://mobile.twitter.com/SeattleMamaDoc/status/598247693694013440/photo/1

[LinksEtc]

Tweeted by @aaronecarroll

"Beyond disclosure: How to think about conflicts of interest and the regulation of medical science"
http://theincidentaleconomist.com/wordpress/beyond-disclosure-how-to-think-about-conflicts-of-interest-and-the-regulation-of-medical-science/

How can we get serious about creating an open, valid, and reliable scientific literature?

We recommend starting by acknowledging our moral response to the problem, and then putting it aside. It's impeding our thinking.

------------------------------------------


Tweeted by @GoAllergy

"Clinical Trial Data: Share and Share Alike?"
http://tinyurl.com/mto67m8

The IOM report comes on the heels of 2 proposals published by the Department of Health and Human Services (HHS) and the National Institutes of Health (NIH) seeking to increase transparency of clinical trials through information submitted to ClinicalTrials.gov, the publicly accessible database run by the National Library of Medicine.

Meanwhile, the European Medicines Agency is establishing standards for transparency of clinical data for trials carried out in the European Union. These new standards are tentatively to be applied to new clinical trials beginning on or after May 26, 2016.

------------------------------------------


Tweeted by @JBBC

"A ROUGH GUIDE TO SPOTTING BAD SCIENCE"
http://journeyingbeyondbreastcancer.com/2014/12/29/a-rough-guide-to-spotting-bad-science/?utm_content=buffer49239&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer

I know I've written about this before on the blog, but today I came across two infographics which are worth sharing on how to spot medical quackery.  Ben Goldacre, author of Bad Science, classifies science reporting as falling into three categories – wacky stories, scare stories and "breakthrough" stories, the last of which he views as "a more subtly destructive category of science story".

&


"The Unknown Unknowns: Crowdsourcing Research Through Social Media"
http://tinyurl.com/o7dec9v

online community of patient experts

social channels provide direct access to patients willing and eager to engage in the research process

------------------------------------------


Tweeted by @Asthma3Ways

"Potential flaws in genomics paper scrutinized on Twitter"
http://www.nature.com/news/potential-flaws-in-genomics-paper-scrutinized-on-twitter-1.17591?WT.mc_id=TWT_NatureNews

A recent Twitter conversation that cast doubt on the conclusions of a genomics study has revived a debate about how best to publicly discuss possible errors in research.

Thanks to Twitter and blogs, he says, "you can crowdsource discussion and analysis. I think that's very healthy for science."

[LinksEtc]

"Science." You keep using that word. I do not think it means what you think it means.
https://www.sciencebasedmedicine.org/science-you-keep-using-that-word-i-do-not-think-it-means-what-you-think-it-means/

It is here that the Dunning-Kruger effect comes to the fore, wherein antivaccine activists think that they understand as much or more than actual scientists because of their education and self-taught Google University courses on vaccines, that their pronouncements on vaccines should be taken seriously.

We know how easy it is to confuse correlation with causation, to exhibit confirmation bias wherein we tend to remember things that support our world view and forget things that do not, and to let wishful thinking bias us.

-------------------------


Tweeted by @ivanoransky


"The Trouble With Scientists"
http://nautil.us/issue/24/error/the-trouble-with-scientists

The idea, says Nosek, is that researchers "write down in advance what their study is for and what they think will happen." Then when they do their experiments, they agree to be bound to analyzing the results strictly within the confines of that original plan. It sounds utterly elementary, like the kind of thing we teach children about how to do science. And indeed it is—but it is rarely what happens.

-------------------------


Tweeted by @NPRHealth


"Searching Online May Make You Think You're Smarter Than You Are"
http://www.npr.org/blogs/health/2015/04/02/396810355/searching-online-may-make-you-think-youre-smarter-than-you-are?utm_source=twitter.com&utm_campaign=health&utm_medium=social&utm_term=nprnews

But at any moment you're also just a few taps away from becoming an insufferable know-it-all. Searching for answers online gives people an inflated sense of their own knowledge, according to a study. It makes people think they know more than they actually do.

-------------------------


Tweeted by @BBC_Future

"A five-step guide to not being stupid"
http://www.bbc.com/future/story/20150422-how-not-to-be-stupid?ocid=twfut

The fact is that we all suffer from some subconscious biases

There are about a 100 to consider, so start swotting up with this comprehensive list.

Intellectual humility comes in many other forms – but at its centre is the ability to question the limits of your knowledge.

---


"List of cognitive biases"
http://rationalwiki.org/wiki/List_of_cognitive_biases


-------------------------------



Tweeted by @charlesornstein

Fighting words. twitter.com/afrakt/status/...

https://mobile.twitter.com/afrakt/status/607855002674204673


"Publication bias is rampant because we're lazy and unserious about science"
http://theincidentaleconomist.com/wordpress/stuff/

[LinksEtc]

"This study shows so much of what's wrong with medical reseach today"
http://theincidentaleconomist.com/wordpress/this-study-shows-so-much-of-whats-wrong-with-medical-reseach-today/

There may be an incredibly simple intervention out there that could cost nothing and save lives, but we won't implement it. Doctors will point to it, and argue about it, but it won't go anywhere for a long, long time. There's no money in it. It's not sexy.

------------------------------------


"The surprising debate about whether doctors should have ties to Big Pharma"
http://www.vox.com/2015/6/4/8725569/doctors-pharma-conflict-interest

There's an interesting back-and-forth between doctors in the New England Journal of Medicine and the British Medical Journal on whether conflicts of interest are actually a huge problem in medicine — and whether efforts to regulate them do more harm than good.

------------------------------------


"Conflicts of interest, the NEJM, and where we go next"
http://theincidentaleconomist.com/wordpress/conflicts-of-interest-the-nejm-and-where-we-go-next/

This discussion has been intense because the stakes are very high. If manipulated research data allow bad drugs to enter the market, people can die. Conversely, if unjustified prejudice against industry slows the progress of research, that could kill people too.

------------------------------------


"Peer Review BC (Before Citations)"
http://blogs.plos.org/absolutely-maybe/peer-review-bc-before-citations/

tis but idle-headed worke; quasi-purloining of my owne humble efforts

---


"Weighing Up Anonymity and Openness in Publication Peer Review"
http://blogs.plos.org/absolutely-maybe/weighing-up-anonymity-and-openness-in-publication-peer-review/

Scientists are in a real bind when it comes to peer review. It's hard to be objective when we're all among the peer reviewing and peer-reviewed, or plan to be. Still, we should be able to mobilize science's repertoire to solve our problems.

------------------------------------


Tweeted by @trishgreenhalgh

.@Richard56 I disagree with your article on peer review. My response is here: timeshighereducation.co.uk/content/the-pe... @trished @tessajlrichards @bmj_latest

https://www.timeshighereducation.co.uk/content/the-peer-review-drugs-dont-work#comment-3277

---


Tweeted by @Richard56

https://www.timeshighereducation.co.uk/users/paul-jump

Perhaps Trish might be able to design some better studies to investigate the value or otherwise of peer review.

------------------------------------


Tweeted by @LisaRosenbaum17

What's worse? Worrying about COI, or worrying about worrying about it? @afrakt insightful meta-thoughts on meta-data twitter.com/afrakt/status/...

"My moral struggles with journal article meta data"
http://theincidentaleconomist.com/wordpress/my-moral-struggles-with-journal-article-meta-data/


------------------------------------


Tweeted by @eliza68

"The Massive Future of Statistics Education"
http://simplystatistics.org/2015/07/03/the-massive-future-of-statistics-education/

But for the data that we are interested in, we need to know the appropriate methods for thinking about and analyzing them. And by "we", I mean pretty much everyone.

------------------------------------


Tweeted by @eliza68

publication bias has public health consequences; this case would be good to include in med/resident/fellow education twitter.com/bengoldacre/st...

---

https://mobile.twitter.com/bengoldacre/status/606486224451149825

Physicians' enthusiasm for prescribing imiquimod to treat children with molluscum contagiosum would likely dramatically decrease if they knew about the 2 RCTs.

------------------------------------


Tweeted by @subatomicdoc

"We are all scientists: How to find reliable sources online."
http://scienceblog.com/78156/we-are-all-scientists-how-to-find-reliable-sources-online/#IlzhC1qLzjy5QpCS.97

In recent decades, the access to information has gotten easier.

now our challenge is sifting through the misinformation to get to the more reliable information

------------------------------------


Tweeted by @Chris5anne

@DavidGilbert43 Thought you might like this? Being weird & thinking differently-sounds familiar... pic.twitter.com/jX5Ja0Cn1w

https://mobile.twitter.com/Chris5anne/status/617396509278085120/photo/1


------------------------------------




This stuff is so interesting ... really.should.stop.now.






Snark warning
[spoiler]Yes, I've been quite diligent with research on food allergies and asthma

lol ... oh goodness ... looking back ... my poor docs   







[/spoiler]

[LinksEtc]

LEARNING FROM THE LAZARUS EFFECT
Most clinical trials for cancer drugs are failures. But for a
 handful of patients, a drug proves to be nearly a cure. What 
can science learn from these "exceptional responders"?
By GARETH COOKMAY 12, 2016
http://www.nytimes.com/2016/05/15/magazine/exceptional-responders-cancer-the-lazarus-effect.html?_r=2

It's quite difficult to track down patients with intriguing case histories, scattered as they are across the country and protected by blankets of privacy. So instead of going through doctors or hospitals, the project makes its appeal to patients directly.

In six months, more than 1,800 patients with metastatic breast cancer have joined, including hundreds of exceptional responders. In return, the project involves them in its decision-­making and promises to share its data with any scientist who asks.

-------------------



I'm probably a bit too unruly for their taste, but in case any of you are interested ...



Food Allergy Research & Education Receives PCORI Award to Develop Patient-Centric Food Allergy Research Program
http://www.foodallergy.org/press-room/2016/051016#.VzNUW_D3arV

Food Allergy Research & Education (FARE) is proud to announce it has received a Eugene Washington Engagement Award from the Patient-Centered Outcomes Research Institute (PCORI)

FARE's two-year project, "Empowering Patient Partners and Key Stakeholders to Develop a Patient-Centric Food Allergy Research Program," seeks to address an unmet need in the research field by developing a partnership of patients empowered to work with other key stakeholders.

it is crucial that the perspectives, preferences and needs of the patient are prioritized

The application period to become a member of FARE's Outcomes Research Advisory Board will open today and run for approximately six weeks.

[LinksEtc]

"Firsthand Account: The Biden Moonshot Summit"
David Shaywitz
http://www.forbes.com/sites/davidshaywitz/2016/06/30/first-hand-account-the-biden-moonshot-summit/#63862f6940fe

This is really it: While so many are deeply dedicated to advancing science and improving care, most individuals also want to be the one who does it.

the concern is that this process has resulted in a culture of data hoarding–at the level of individual scientists, individual research groups, individual hospitals, even individual countries (who legislate against health data egress), foreclosing the possibility of benefiting from the deeper insights only possible with larger datasets.

One response to a health system that seems unwilling to part with data is for patients to drive this process themselves; let patients request their data, and drive the sharing.

----------


"We asked hundreds of scientists what they'd change about science. Here are 33 of our favorite responses."
http://www.vox.com/2016/7/14/12120746/science-challenges-fixes

Most papers are generated for advancement of careers rather than advancement of human knowledge." —Joseph Hyder, professor of anesthesiology, Mayo Clinic

----------


"The 7 biggest problems facing science, according to 270 scientists"
by Julia Belluz, Brad Plumer, and Brian Resnick on July 14, 2016
http://www.vox.com/2016/7/14/12016710/science-challeges-research-funding-peer-review-process

"Science, I had come to learn, is as political, competitive, and fierce a career as you can find, full of the temptation to find easy paths." — Paul Kalanithi, neurosurgeon and writer (1977–2015)

Scientists often learn more from studies that fail. But failed studies can mean career death. So instead, they're incentivized to generate positive results they can publish. And the phrase "publish or perish" hangs over nearly every decision. It's a nagging whisper, like a Jedi's path to the dark side.

----------


Re: Bias

"ALL THE YOUNG JEDIS"
http://www.curiumco.com/news-master/2016/1/28/all-the-young-jedis

Luke: Is the dark side stronger?

Yoda: No -  quicker, easier, more seductive... like a giving a TED talk.

not including proper controls, omitting data that doesn't fit expectations, letting assumptions go untested

----------



"Research Nirvana: The Generosity Edition"
http://blogs.plos.org/absolutely-maybe/2016/06/30/research-nirvana-the-generosity-edition/

It's hard to be generous, when we often have to guard ourselves against those who will be the opposite – taking credit, taking advantage, capitalizing the efforts of others.

Elements of generosity included in the image in this post:

Diversity
Fairness
Collaboration
Service
Openness
Sharing
Giving