If you were an allergy researcher ...

[PurpleCat]

Is sesame allergy in the USA more heavily concentrated in certain minority communities (racial, ethnic, religious)?

In DD's case, no.

The few we know who also have sesame allergy, no.

[LinksEtc]

I'm wondering if this subject needs its own thread, but for now, I'll throw it in here.  I'm not searching for this "stuff", but it popped up on a SmartBrief list I joined years ago.     


"MIT Lab Hosts Nation’s First Stool Bank, But Will It Survive?"
http://commonhealth.wbur.org/2014/03/first-stool-bank-survive

Late last week, the FDA released a draft of its new fecal transplant guidelines. As they are worded, things don’t look good for the OpenBiome stool bank.

The FDA is thinking about requiring the patient or the doctor to personally know the donor. But that doesn’t work so well for the stool bank, where the donations come from “Donor One” and “Donor Two.”

ETA:

"Draft Guidance for Industry: Enforcement Policy Regarding Investigational New Drug Requirements for Use of Fecal Microbiota for Transplantation to Treat Clostridium difficile Infection Not Responsive to Standard Therapies."
http://tinyurl.com/nwpr5ft

[twinturbo]

Spoiler (click to show/hide)

There's an emoticon for this. 

[LinksEtc]

 


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Tweeted by @ylecun

"Handful of Biologists Went Rogue and Published Directly to Internet"
http://www.nytimes.com/2016/03/16/science/asap-bio-biologists-published-to-the-internet.html

On Feb. 29, Carol Greider of Johns Hopkins University became the third Nobel Prize laureate biologist in a month to do something long considered taboo among biomedical researchers: She posted a report of her recent discoveries to a publicly accessible website, bioRxiv, before submitting it to a scholarly journal to review for “official’’ publication.

The preprint movement, some #ASAPbio advocates argue, may presage the need for a greater cultural shift than scientists have not yet been willing to make: evaluating one another based on the substance of their papers, not where they are published.

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Tweeted by @NPRHealth

"Academic Medical Centers Get An F In Sharing Research Results"
http://www.npr.org/sections/health-shots/2016/02/23/467712481/academic-medical-centers-get-an-f-in-sharing-research-results

In a study powered by the labor of medical students, my colleagues and I found that two-thirds of clinical trials led by scientists at our finest academic institutions didn't share their results publicly within two years of the study's completion.

Too many times, study results are neither reported on the government website dedicated to that purpose, clinicaltrials.gov, nor published in a medical journal.

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Flint and the Long Struggle Against Lead Poisoning
http://www.newyorker.com/news/daily-comment/flint-and-the-long-struggle-against-lead-poisoning?mbid=social_twitter

Edwards questioned the paper’s methodology, which was, in fact, fundamentally flawed. And yet it took six years for the C.D.C.—the C.D.C.—to admit its errors.

The unfortunate truth is that political influence shapes the work of every public agency

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Criticism of ‘research parasites’ moves NEJM in the wrong direction
https://www.statnews.com/2016/01/26/research-parasites-nejm/

the NEJM found itself in the midst of an online whirlwind over the past week, as readers wondered aloud on social media why editor-in-chief Dr. Jeffrey Drazen and deputy editor Dr. Dan Longo would refer to scientists requesting access to others’ data as “research parasites.”

With the exception of maintaining patient confidentiality — which isn’t the issue here — sharing data shouldn’t come with any strings.

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"NEJM Editor Flip Flops On Data Sharing After Social Media Fires"
http://cardiobrief.org/2016/01/25/nejm-editor-flip-flops-on-data-sharing-after-social-media-firestorm/

By Monday morning Drazen was ready to raise the white flag. In what is almost certainly one of the fastest published responses in NEJM history– if nothing else demonstrating how social media has speeded up the publishing cycle– Drazen published another editorial in an attempt to stem the flow of criticism and reverse the impression that NEJM was opposed to data sharing.

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"On research parasites and internet mobs - let's try to solve the real problem."
http://simplystatistics.org/2016/01/25/on-research-parasites-and-internet-mobs-lets-try-to-solve-the-real-problem/

A couple of days ago one of the editors of the New England Journal of Medicine posted an editorial showing some moderate level of support for data sharing but also introducing the term “research parasite”

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"Top journal editors resist transparency"
http://www.healthnewsreview.org/2016/01/top-journal-editors-resist-transparency/

To his credit, NEJM editor Dr. Jeffrey Drazen just today published a clarification on that journal’s policy of data sharing specifically for clinical trials. He said that the journal would require authors to commit to making data available within 6 months of publication. With more eyes on data, tragedies such as those of the over-marketed arthritis drug Vioxx can very likely be truncated before the loss of 55,000 lives and tens of thousands of heart attacks and strokes.

[LinksEtc]

Good for her!  Never underestimate patient advocates!

But at the FDA workshop, there was a patient outcry. Literally, one patient crying.

It was Catherine Duff. She was apparently the only patient present. And after one day of fuming silently, she decided to speak up.

She told the FDA its decision was going to deter doctors and kill patients.

“At the end of it, I got a standing ovation and about half the people in the room were crying. And after that the meeting took on a whole different tone.”

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



"Why Aren’t There More Scientists? A One-Word Explanation"
http://phenomena.nationalgeographic.com/2016/04/29/why-we-dont-produce-more-scientists-a-one-word-explanation/#.VyTT4pxqrLM.facebook

When we talk in this presidential campaign about “falling behind” in the race to produce scientists, all Jahrens can do is laugh. “America may say that it values science, but it sure as hell doesn’t want to pay for it.”

“Ask a science professor what she worries about,” Hope Jahren says, “It won’t take long. She’ll look you in the eye and say one word: ‘Money.’”

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



OH, HOW THEY ALL LAUGHED
By Marsh McCall , MAY 20, 2016
http://www.newyorker.com/humor/daily-shouts/oh-how-they-all-laughed?intcid=mod-latest

Similarly, when Louis Pasteur posed his theory that diseases were carried by germs, they laughed long and loud. But then his research began saving lives, and the laughter grew fainter, and less certain, and soon died away completely.

inventors and thinkers continue to test the intellectual status quo, ignoring the thunderous, hurtful laughs they often provoke

[LinksEtc]

I found this interesting:

http://susannahfox.com/2014/05/17/false-boundaries-in-health-care/

Why shouldn’t research questions be generated by people with the disease being studied? Why shouldn’t research teams make sure there’s a seat at the table — more than one! — for people most affected by their work?

[LinksEtc]

Tweeted by @Aller_MD

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"A brave new world – ‘research with’ not ‘research on’ patients"
http://blogs.biomedcentral.com/bmcblog/2014/05/20/international-clinical-trials-day-2014/?utm_content=buffer0e6f1&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer

Since the recognition and acceptance of patient and public involvement, there has been a rapid accumulation of evidence regarding its worth and it has been implemented in many health-care systems across the globe.

[LinksEtc]

It's a little lonely in on-topic these days .... but I still have some posting left in me ...

so here is an experiment    ....

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


Step 1:

Collect FA suggestions/ideas/hypotheses (ex. - research ideas, ways to improve patient education, form layouts, etc.)  from (active/educated patients/caregivers), nurses, and docs/allergists.  Then you have some docs write up the non-doc ideas professionally with relevant allergy jargon so that it is not easy to determine which ideas came from which group.



Step 2:

Get 2 separate groups of allergists.  Give 1 group of docs the info/ideas as originally written (status of author known patient/nurse/doc).  Give the other group of docs the formally written ideas (status of author not known).  Ask the allergists to rate the ideas (potential to benefit patients, area warranting further research, etc.) ... don't let the allergists know the details of the experiment  .



Step 3:

Compare the rating results from the 2 groups of allergists.  Follow up on any interesting ideas generated from the experiment.


 

[LinksEtc]

Tweeted by @LguzzardiM

"'Decoding Annie Parker' could inspire patient participation in health decisions"
http://www.tampabay.com/news/health/decoding-annie-parker-could-inspire-patient-participation-in-health/2184136

Decoding Annie Parker, starring Samantha Morton, tells of Parker's search for answers after doctors insist her breast cancer is just bad luck — though the disease killed both her mother and sister. With only a high school education, and while coping with cancer, a child and a far-less-than-ideal husband (played by Aaron Paul of Breaking Bad fame) Parker sets out on her quest.

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


Twitter @ePatientDave @cancercommons

https://m.youtube.com/watch?v=g0E8kV09UKo&index=4&list=PLBZSXxWC2le25AMcoxlJ0CWp-AEDUBl2c

After being diagnosed with a rare type of cancer, Sharon Anderson joined other patients in an online discussion group to help figure out what she could do. Little did she know, she would become the coordinator of a patient-led effort to find a better treatment. With the help of a Stanford oncologist and his colleagues, her work ultimately led to two exciting new treatments, one of which is being tested in a clinical trial.

[LinksEtc]

Docs helping patients to surf the internet

This is kind of a pie in the sky wish ....

I wish there was a place on the internet where docs and regular patients/caregivers could have deep discussions about general things (not specific patient/medical advice) ....

A place that it would be clear the docs would be free from liability concerns, free from concerns of violating ethical boundaries ....

A place where patients could freely speak their minds without being labeled a "bad" patient/caregiver, a think-she-knows-it-all type, a google mom ... free from fears of offending the doc or damaging the relationship ....

A place where there is actually time to talk about ways things could be improved, to talk about general ideas and possibilities ...

A place where docs are not just educating patients, but where patients are sharing their knowledge with docs ...

Where real communication and interaction could occur.


Truly embrace the potential of the internet.

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


Heard about this from @SusannahFox

http://c3nproject.org/about-c3n-project

The Collaborative Chronic Care Network (or C3N Project) grew out of a realization that the system for chronic illness care isn't really working

Ultimately, a C3N will be where patients, clinicians and researchers work together as co-designers in a learning, social production system for health that aims to transform the system of chronic illness care.

[LinksEtc]

Tweeted by @subatomicdoc


"As Data Overflows Online, Researchers Grapple With Ethics"
http://tinyurl.com/psfjysm

Once forced to conduct painstaking personal interviews with subjects, scientists can now sit at a screen and instantly play with the digital experiences of millions of Internet users. It’s the frontier of social science — experiments on people who may never even know they are subjects of study, let alone explicitly consent.

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


Tweeted by @edyong209

"The Story I Never Wrote"
http://www.lastwordonnothing.com/2016/02/18/the-story-i-never-wrote/

Last year, I abandoned a story.

I had been easily convinced by an argument because it appealed to me, not because I had any evidence to support it.

a reminder to always look for the person who will laugh at your story.

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


Tweeted by @Farzad_MD

"Scientists can't agree whether salt is killing us. Here’s why."
https://www.washingtonpost.com/news/wonk/wp/2016/02/17/scientists-cant-agree-whether-salt-is-killing-us-heres-why/

In a more perfect world, where scientists sought balance in the evidence they reviewed, you would see more green - signs that scientists were considering evidence that is contrary to their beliefs.

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


Tweeted by @Richard56

(Just FYI, the FAS board edited the link & the title  ... it was spelled out)

The Unbearable Asymmetry of bs
http://tinyurl.com/za2dje9

If they want to keep their jobs, at least, they must contend with a perverse “publish or perish” incentive structure that tends to reward flashy findings and high-volume “productivity” over painstaking, reliable research. On top of that, they have reputations to defend, egos to protect, and grants to pursue. They get tired. They get overwhelmed. They don’t always check their references, or even read what they cite. They have cognitive and emotional limitations, not to mention biases, like everyone else.

[LinksEtc]

"Why our peer review system is a toothless watchdog"
https://www.statnews.com/2016/04/14/peer-review-watchdog/

With friends like these, who needs peer review? In fact, we do need it, but not just only in the black box that happens before publication. We need continual scrutiny of findings, at sites such as PubMed Commons and PubPeer, in what is known as post-publication peer review. That’s where the action is, and where the scientific record actually gets corrected.

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"A FRAUD THAT SHOOK THE WORLD OF SCIENCE"
http://www.nytimes.com/1981/11/01/magazine/a-fraud-that-shook-the-world-of-science.html?smid=tw-share

Dr. Helena Wachslicht-Rodbard, a young endocrinology researcher at the National Institutes of Health, had bitterly complained to her supervisor and other persons that Felig and Soman, in one of their papers, had plagiarized some of the words and ideas of a paper of hers that they had seen that had not yet been published. Moreover, she had written to Robert W. Berliner, dean of the Yale School of Medicine as well as Soman's and Felig's superior, questioning the ''authenticity'' of the data in their paper and suggesting that they had never actually done the research reported in it.

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"RETHINKING SCIENCE AND POLITICS"
http://www.milbank.org/the-milbank-quarterly/search-archives/article/4076/rethinking-science-and-politics

A presidential candidate in a debate watched by 25 million people who states that children receive too many vaccines cannot be effectively countered by footnoted editorials in scientific journals. Instead, another political leader must stand up and not only provide the right evidence but also support the expertise of leading public health organizations.

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"Science is too secretive and slow. So this researcher is live-blogging her work."
http://www.vox.com/2016/3/3/11148452/science-blog?utm_campaign=vox&utm_content=article:fixed&utm_medium=social&utm_source=twitter

She hopes the transparency will encourage others in the field to collaborate with her, correct her when she's wrong, and, most importantly, help bring science up to the speed of the internet age.

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"Richard Smith: A better way to publish science"
http://blogs.bmj.com/bmj/2015/10/22/richard-smith-a-better-way-to-publish-science/

The essence of the idea is that it should be a process run by scientists for scientists making the publication of science much quicker and simpler. Studies with the data behind them would appear not in journals but on databases run by funders, universities, or other research institutions. All studies would be open access, meaning anybody anywhere could see them (and the underlying data), and the whole process would be open from beginning to end—and there would really be no end as debate on the studies and data could continue indefinitely.

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"Macchiarini and Karolinska: the biomedical ethics meltdown"
https://forbetterscience.wordpress.com/2016/02/21/macchiarini-and-karolinska-the-biomedical-ethics-meltdown/

Paolo Macchiarini, the charismatic star surgeon and stem cell pioneer, once lauded for saving lives of suffocating patients, is now really in trouble. Having described himself once in The Lancet as “a wild animal that does not need to be in a cage”, Macchiarini might soon find himself behind bars for medical malpractice.

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The Stress Test
Rivalries, intrigue, and fraud in the world of stem-cell research.
http://www.newyorker.com/magazine/2016/02/29/the-stem-cell-scandal?mbid=social_twitter

Riken had cited Obokata for research misconduct and charged her mentors with “heavy responsibility”; one of those mentors had implicated her in a fraud; she had been hospitalized for depression; a co-author had suffered a stress-related stroke; and an outside committee had recommended that Riken dismantle C.D.B.

Sasai may have felt the anguish most profoundly. Distracted in the lab, he seemed frail and diminished, and was being treated by a psychiatrist. Then, in August, 2014, a security guard found him hanged from a handrail in a stairwell at C.D.B., his shoes placed neatly on the steps.

[LinksEtc]

So, here is (maybe a bad) idea ...

What would happen if docs started giving their patients "pop quizzes" at the annual ped and/or allergist/pulmo appt?

Show me your Epi's.

Show me your albuterol.

Show me your action plans.

Demonstrate how to use these.

What should you do in this situation?

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

Bad patient - get that prescription filled 

Bad patient - you should always carry   

In that situation, according to the plans - see - you should handle that situation this way.  Here's some more educational material that might be helpful.

You get a gold star for awesome job 

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

I'm 1/2 joking, but hey, I think the idea has some potential if it could be done in a way that doesn't offend.

 

Tweeted by @GotEpi

"New Epinephrine Study Shows Alarming Results"
http://community.kidswithfoodallergies.org/blog/new-epinephrine-study-shows-alarming-results

My co-workers and I recently conducted a survey at Nationwide Children’s Hospital’s allergy clinic. We asked families of kids with food allergies who saw an allergist at the clinic whether they had their self-injectable epinephrine with them at the time. To a large degree the answer was “no” – even among those at the highest risk of severe reactions.

I thought this idea had potential     

Sad, although not surprising, about the results.

[CMdeux]

Ouch.  That is so disheartening.   

[LinksEtc]

Re: Docs helping patients to surf the internet

Tweeted by @kevinmd

"Women’s right to vote and the e-patient movement"
http://www.kevinmd.com/blog/2014/06/womens-right-vote-e-patient-movement.html

All of this may sound familiar to patients whose opinions are considered not worth hearing because, after all, they’re only patients, so what could they know?

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


CM - if you don't want this quoted here, just delete this part of the post.


"Thresholds for Allergens being Established: For better food allergy labeling guidance"

http://allergy.hyperboards.com/action/view_topic/topic_id/17461

Posted by CMdeux  12/10/10

He assumed that I was a 'typical' SAHM with a food allergic child... and was (in his mind, anyway) appropriately dismissive of anything I had to say.

I never really expected him to say, "Oh my gosh! I'm so sorry to have assumed you were an idiot-- you're right!" LOL.

But this brings me to a good point, which is that with many individuals engaged in research in the field, they DO NOT think that we are anything more than poorly-educated parents, probably hysterical and in need of patronizing platitudes so that we'll calm down and go away. Because, you know, that way the "scientists" can get back to the real job of doing "science-y" stuff. The subtext being "don't worry your pretty little heads about it, because you wouldn't understand anyway..."