|
|
- Fecal transplant. (Just wrote a blog post about this.) I think it has huge potential and there's no research in the food allergy area yet.
- Fecal transplant. (Just wrote a blog post about this.) I think it has huge potential and there's no research in the food allergy area yet.
Dr. Hibberd is a lively lecturer who leavens her hour-long speech with wry reference to her own British origins, and prefers the word “poop” to more formal alternatives in the discussion of one of the most promising treatments, fecal transplantation.
Yeah, I know. Pie in sky.
But what the he11 . . . as long as we're dreaming . . . :smooch:
Not trying to annoy you Boo with a link to the above ... just interesting to see this subject again.
Why in the world would it annoy me?
There's (seriously) nothing I love more than discussing fecal transplant!
And sorry...didn't see your note above about linking my blog. I guess it wouldn't hurt anything. I do try not to tie my personal ID to my blogging ID, given my son's real discomfort with it all, but I guess my ID here is somewhat removed from my RL identity. Thanks!
You're just a sh**-stirrer at heart, aren't you? :smooch:
(Hope you know that my comment WAS a teasing one in light of the topic of convo-
Links, remember the study that showed how (painfully) few doctors actually knew themselves how to properly use the Epipen?
Maybe that's changed now that there is AuviQ to tell them what to do. ;D
:hiding:
Over a period of years, why do some people have very large SPT's yet negative RASTs to an allergen?
Over a period of years, why do some people have very large SPT's yet negative RASTs to an allergen?
Couldn’t we reach our ultimate goals faster if we formally shared the negative results of solidly executed experiments that yielded less than desirable findings?
I don’t know why Dr. X and Dr. Y remain unwilling to criticize the study publicly. They likely have very good reasons.
But I would argue that whatever those reasons are, they’re trumped by the estimated 2 million people worldwide who are afflicted with MS and who deserve rapid scientific progress.
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?
Question for FAS mod team: DH is considering live blogging. We aren't after revenue for it or anything, would it be ok to link to his live blog of event? We'd definitely take requests for specific plenaries or speakers. Some of the papers presented are at the accepted stage but pre-publication.
It's in two weeks. [url]http://www.apcaaci2013.org/InvitedSpeakers.html[/url] You can see speaker profiles, plenaries and schedule links to left. Not sure which papers are going to be presented.
We could even call it the FAS live blog and somehow direct traffic here.
In November 2013, FARE published “A Vision and Plan for Food Allergy Research,” a comprehensive strategic plan that sets forth FARE’s strategy for building a deep scientific understanding of the disease and accelerating the development of safe, practical therapies that would shield individuals with food allergies from life-threatening reactions.
Maybe you should work fecal transplants into conversations more often? <-- this is me, being helpful and supportive. ;D
“There were physicians that used a variety of concoctions that had fecal matter in it, although in those days they had to drink it,” Oliva-Hemker said, referring to the medicinal “yellow soup” mentioned in an ancient Chinese text.
Currently, for any indications other than C. diff infection, doctors who want to perform the procedure need to apply for an investigational new drug research permit.
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?
My allergist actually does that. And scolded me for not holding my pretend epi to my leg for the 10 seconds.
Is sesame allergy in the USA more heavily concentrated in certain minority communities (racial, ethnic, religious)?
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.”
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.
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.
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
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.
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.
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”
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.
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.”
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.’”
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
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?
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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 :P
Bad patient - you should always carry :tongue:
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 :thumbsup:
-------------------------------------------------
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.
:P
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.
Tweeted by @kevinmd
"Women’s right to vote and the e-patient movement"
[url]http://www.kevinmd.com/blog/2014/06/womens-right-vote-e-patient-movement.html[/url]QuoteAll 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?
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..."
“That’s basically what they left us with—‘You need more patients,’ ” Matt told me. “And I said, ‘All right, we’ll get more.’ ”
Researchers also hesitate to share data with potential competitors, both to protect their funding and to insure that they get credit for their work.
The Mights couldn’t wait for the culture of scientific research to change
“It’s kind of a shift in the scientific world that we have to recognize—that, in this day of social media, dedicated, educated, and well-informed families have the ability to make a huge impact,” she told me. “Gone are the days when we could just say, ‘We’re a cloistered community of researchers, and we alone know how to do this.’ ”
“Most people are afraid to say anything about the New England Journal because they’re afraid they won’t get something published there,” said Topol, whose last piece appeared in its pages in 2011. “That’s part of this oppression.”
Are patients jeopardizing clinical trials by discussing them on social media?
There is growing fear in the medical community and the pharmaceutical industry that an increasing number of people who participate in clinical trials may indeed compromise research by chatting about treatments, side effects and enrollment tips on Facebook, online forums and blogs, according to The Wall Street Journal.
Under the 1976 Toxic Substances Control Act, the E.P.A. can test chemicals only when it has been provided evidence of harm. This arrangement, which largely allows chemical companies to regulate themselves, is the reason that the E.P.A. has restricted only five chemicals, out of tens of thousands on the market, in the last 40 years.
The National Institutes of Health’s budget for research grants has fallen 14 percent since its peak in 2004, according to the American Association for the Advancement of Science. With scarce resources, there’s little money for academics to study chemicals that most already deem to be toxic. Yet regulatory officials and attorneys say companies have a strong financial interest in continuing to publish research favorable to industry.
The worlds of science and politics came together twice on Wednesday afternoon, and the collisions couldn’t have been more diametrically at odds.
EPA shut down their own scientist's fracking study. He leaves agency, FOIAs for data, and finishes study himself!!
The decision by EPA to retreat from its draft study at Pavilion “wasn’t made by any of the scientists” at the agency, DiGiulio said, but rather by the agency’s senior leadership.
As I followed people who did qualitative research, I became involved in a conversation (started by Alex Clark) about BMJ’s policy of not publishing qualitative research (which was hash-tagged #BMJNoqual). It quickly resulted in Trisha Greenhalgh’s suggestion that an open letter should be written and sent to the BMJ asking them to reconsider their policy. As she gathered support of many wonderful scholars, she also offered me the opportunity to sign. Needless to say, I was honoured and delighted.
But in the journal Bioessays, a team of scientists has raised a creepier possibility. Perhaps our menagerie of germs is also influencing our behavior in order to advance its own evolutionary success — giving us cravings for certain foods, for example.
Maybe the microbiome is our puppet master.
These conclusions sent me right to her conflict-of-interest disclosure statement. Although Dr. Oparil reports receiving grants or fees from companies making anti-hypertensive drugs—-and, even more remarkable, from The Salt Institute—she states that she has no conflicts of interest.
I think she does.
Physicians rely on published data to determine the best treatment for their patients. When it is contaminated by inappropriate influence, doctors can’t provide the best possible care.
We need to stop hiding our heads in the sand. The data is clear. Change is essential.
every serious reader wants to trust that the science and clinical medicine they are accessing is as correct and current as possible and that biases and conflicts of authors and reviewers are disclosed
Editors and reviewers should be selected for expertise and trustworthiness, not credentials.
Consider the difference in a system that declares, “There is no real value in content that no one views,” to what we have in STM publishing today: the “ impact factor” that declares a journal important the more it is cited.
Consider this. A blog post of mine, “Appendicitis: Diagnosis, CT Scans and Reality,” which I wrote 4 years ago has received over 19,600 page views and more than 100 comments. I am certain that post has been read far more than all of my published research papers combined. In fact, my 550 blog posts have recorded over 1 million page views.
What does it all mean?
Scientists must keep careful records and be scrupulous with gathering and storing their data, but they have ultimately to be trusted.
The true scientist (if there is such a person) will be delighted when his or her favourite hypothesis is slayed by data.
Conflicts of interest are real, and they are still influencing decisions from the level of the patient all the way up to national health policy. We will never be able to eliminate them all. But acknowledging them and talking about them openly is an important first step toward minimizing their impact.
Tweeted by @Richard56
"Richard Smith: Why scientists should be held to a higher standard of honesty than the average person"
[url]http://blogs.bmj.com/bmj/2014/09/02/richard-smith-why-scientists-should-be-held-to-a-higher-standard-of-honesty-than-the-average-person/[/url]QuoteScientists must keep careful records and be scrupulous with gathering and storing their data, but they have ultimately to be trusted.QuoteThe true scientist (if there is such a person) will be delighted when his or her favourite hypothesis is slayed by data.
Um-- well.
"Delighted" might be overstating things just slightly. ;)
"Intrigued and excited" though-- that much I buy. :yes:
To innovate often requires the individual to stand alone, often against quite significant foes, in order to get their ideas and thoughts out there. It’s a tough job, especially as so many of our organizations are set up with efficiency in mind, so the status quo is very much what they’re looking to protect.
We need to expand our definition of diversity to include the weird—a group often maligned and avoided. These are people who appear to us as different, strange, and even offbeat; they just don’t fit in.
There is potency and innovativeness in certain kinds of weirdness that can help businesses thrive.
We’re back to blaming mothers in health research—or so it would seem.
…history teaches us that sometimes when we talk about the pathology of mothers, we aren’t actually talking about mothers at all. As we learned all-too-well in the 1940s, concerns about the behaviors of mothers are sometimes shaped, not by the actions of actual mothers, but by fatherly concerns that women aren’t acting “as they should.”
My mind was free to play, and I was able to solve a complex problem much more effectively. I suspect that a similar mindset leads to innovations at many levels
Right now, I am so stuck on WHY and HOW. I have one kid with absolutely no food allergies and another one with a bunch of them. Why and how are they so freaking different? I cannot help but feel that environment and diet have somehow caused the allergies in the first place. I'm sure there is a genetic component as well, but that is completely lacking in my case, as far as I know, and I hate the idea that things are just random. :rant:
I love the "what causes allergies" game. I really do. I've played it for years, read all the research, listened to every crackpot theory and the not-so-crackpot ones.
I love it because I hate what I have to face if I stop playing. I hate that my kid may have to go through life with these allergies and there's nothing I can do.
Research misconduct degrades trust in science and causes real-world harm.
Those who commit research misconduct cannot be trusted. It’s too easy to be tempted into ignoring or destroying data that undermines your work.
The backdrop for this new patient-driven paradigm for treating disease is a quiet crisis in funding for biomedical research. Scientists studying diseases are fighting over a steadily shrinking pool of money for research. But for breast cancer, Visco believes, the problem isn't a shortage of funding — it's how it's being spent.
They want to be a part of something like Quirky. "The hardest part about the business we run is getting people to trust us with their ideas. It's their identity, it's who they are," he says. And it's Quirky's identity as well. It's why a company like GE was interested in the first place, even if, this time, it didn't need all those other voices.
I summarized the current system: researchers invent new drugs, experts give lectures about them, front line clinicians prescribe them to their patients, who do (or don’t) take them in the context of their families and communities.
The question we brainstormed: how might we reconfigure these actors if there were no rules, no laws.
The secret here is not to reject the extremes as immediately unworkable. Rather, you use them as a jumping off point for the most remarkable thought process … what if such a thing were possible?
you need a diverse, multiform meeting-place of cultures, where people have quite different backgrounds, biases and conceptual starting-points in life and work
shared core values which both foster and support innovation. You need a culture that moves fast
Geneticist Eric Topol of the Scripps Research Institute in San Diego, California (17th place; 44,800 followers), who boasts more than 150,000 citations, says he once thought the social media platform was only for “silly stuff” like celebrity news.
“It actually may be the most valuable time [I spend] in terms of learning things that are going on in the world of science and medicine,” says Topol
Humility is all about maintaining our pride about who we are, about our achievements, about our worth — but without arrogance — it is the antithesis of hubris, that excessive, arrogant pride which often leads to the derailment of some corporate heroes, as it does with the downfall of the tragic hero in Greek drama. It’s about a quiet confidence without the need for a meretricious selling of our wares. It’s about being content to let others discover the layers of our talents without having to boast about them. It’s a lack of arrogance, not a lack of aggressiveness in the pursuit of achievement.
It is ironic that the world we live in today is built on a solid foundation of rigour in a number of fields such as science, medicine, economics, political science and many others. Yet that same world makes it easier than ever for non-experts to spread their intuitive falsehoods under the pretext of common sense.
I would want to focus on systematic study of the "impossible" patients-- that is, those who react to "impossibly" small traces, or those who are allergic to MANY foods, or foods that are "not allergenic."
The power of anonymous comments—and the liability of those who make them—is at the heart of a possible legal battle embroiling PubPeer, an online forum launched in October 2012 for anonymous, postpublication peer review.
One possible charge is defamation, Roumel says, because he believes several comments—some now removed by PubPeer’s moderators—stray from the facts to insinuate deliberate misconduct, in violation of PubPeer’s posting guidelines.
Improving research transparency is now at the forefront of most people’s agenda and with the EU CTR only a few years away the momentum of changes within the UK will only increase. I think over the next few years there are going to be some great debates on research transparency, though I think one thing is clear; it’s not a question of if, it’s a question of when and how.
Just look at Albert Einstein. He was exactly the kind of smug, aloof, unruly teenager a teacher would be happy to throw out of class. In fact, he so infuriated his teachers at the Swiss Polytechnic Institute that they would lock him out of the library.
Research has shown that social diversity in a group can cause discomfort, rougher interactions, a lack of trust, greater perceived interpersonal conflict, lower communication, less cohesion, more concern about disrespect, and other problems.
This is how diversity works: by promoting hard work and creativity; by encouraging the consideration of alternatives even before any interpersonal interaction takes place. The pain associated with diversity can be thought of as the pain of exercise.
In the eyes of the American public, scientists are seen as respectable and competent — but not necessarily trustworthy, according to a new study.
Every single one of the big existential challenges we face in this century calls for better science, to identify the problems, and better technology, to identify the solutions. But the science won’t get done, and the solutions won’t get implemented, unless the general public is part of the process. And to be involved in a meaningful way, citizens need accurate information. That’s where science and technology writers come in.
One of the recurring themes (from many different contributors) on the Impact of Social Science blog is that a new paradigm of research communications has grown up – one that de-emphasizes the traditional journals route, and re-prioritizes faster, real-time academic communication in which blogs play a critical intermediate role. They link to research reports and articles on the one hand, and they are linked to from Twitter, Facebook and Google+ news-streams and communities.
By patients: During my holiday I thought a lot about what would happen if we let patients develop their own products and us only facilitating with resources, knowledge and finance.
Well, this makes sense: Women not represented in clinical trials because women’s data “skews study results” wp.me/p1CO0X-2lM @mathbabe
they have recently decided over at the NIH, which funds medical research in this country, that we should probably check to see how women’s health are affected by drugs, and not just men’s.
Tweeted by @subatomicdoc
"Why research beats anecdote in our search for knowledge"
[url]http://theconversation.com/why-research-beats-anecdote-in-our-search-for-knowledge-30654?utm_content=buffer143df&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer[/url]QuoteIt is ironic that the world we live in today is built on a solid foundation of rigour in a number of fields such as science, medicine, economics, political science and many others. Yet that same world makes it easier than ever for non-experts to spread their intuitive falsehoods under the pretext of common sense.
“I can write an article only when I agree with myself one hundred percent, which is not my normal condition.”—Amos Oz
the problem is that without the background to determine whether or not ideas (whether our own or those that we find appealing when promoted by others) are even plausible, we can get into the weeds pretty quickly.
It takes a VERY intelligent and secure clinician/researcher to actually explain why something is wrong/impossible/implausible, however, and that is time that (mostly) is better spent on doing research or doctoring-- because there are just not enough of those people in the world.
Unfortunately, that leaves a gap
I definitely do NOT have the understanding of atopy that our allergist does
Ok ... really, I have some empathy for docs with this whole internet issue ...
"Going House of Cards on anti-vaxxers: Why we need Frank Underwood."
[url]http://www.kevinmd.com/blog/2014/06/going-house-cards-anti-vaxxers-need-frank-underwood.html[/url]
So while this stuff is important, it's also important (IMO) for us as patients to know when the answer is "I don't know" versus "Nobody (yet) knows," versus "the answer isn't at all clear at the moment, but here are some ideas..."
This is why lay review is often so frustrating. Picking up the vocabulary isn't always enough to provide a true framework of understanding (assuming that a consensus exists). There's no basis for evaluating the basic experimental design to tease apart those research articles which are bad/flawed, versus those that are good or well-considered and thorough. That's critical, because the validity of the conclusions rests upon that distinction-- it's not how WIDELY READ a paper is, nor how popular with the press.
Multiple perspectives are generally a good thing-- as long as they don't compromise care/management in a timely fashion, YK?
It found that when deciding on whether to stick our heads above the parapet
far too few clinicians have the time and inclination to really keep fully up to date on current practice parameters even within their own narrow specialties, nevermind some of the more esoteric or unusual (rare) things that we may present to them.
This places patients in an impossible position, actually. Do we:
a) keep ourselves informed to the best of our ability? this means keeping up with AAAAI meeting abstracts, patient-care guidelines as they are published, etc.
b) follow the (sometimes out of date) recommendations, well-meant, of our physicians without challenging their authority?
If you're an informed patient, eventually that conundrum is going to present itself.
For example, as a writer and head of a physics department, I get quite a few unsolicited communications about new theories of physics, often involving Einstein having been wrong, or the Higgs boson actually being a macaroon or something. I have a prior bias here, based on the enormous amount of existing evidence.
Thomas Kuhn, who I mentioned above, became famous for his concept of paradigm shifts. He pointed out that even great scientists get stuck in a particular way of thinking about things, even when their theories no longer match established facts. That’s why it is usually an outsider—or a new generation—that tends to break new ground.
Truly original ideas rarely come from diligently working within one field, but rather from synthesizing across domains.
Finally, break time—the last unmanaged part of the workday—will no longer be a waste of time.
Funding exists for new research. Try NIH. The talent pool here is more than sufficient for good study design and adhering to ethical requirements.
I don't suffer from overthinking, I enjoy it. Depending on the context and how you define enjoy and overthinking.
I often wonder if my work makes a difference. I also often wonder why I have so many pens in my bag.
“enable patient communities to convert anecdotes into structured self-experiments that apply to their daily lives.”
Truly original ideas rarely come from diligently working within one field, but rather from synthesizing across domains.
Noooooo ;D but thank you that you would even suggest such a thing to me. I love that you guys see value in what I do. :smooch:
Now, if FAS ever did form an org, you can bring me in as an assistant in the research, education (written material), & forms areas ... give me a small, quiet room with lots of coffee & I'd be good to go. :)
Links, I'd make your pot of coffee every day. With a smile. ;)
Stakeholder engagement in research refers to the involvement of patients, doctors, payers, and other decisionmakers, from the early stages of setting priorities and forming research questions through the final stages of implementing and disseminating results. Many advocates for patient-centered outcomes research (PCOR) and comparative effectiveness research (CER) see collaboration between researchers and stakeholders as the best way to generate evidence that is relevant, responsive, and trustworthy, and thus likely to be put into practice.
When ‘leadership’ is confused with ‘the need to know everything’ it can lead to cultures of bluff where people feel it’s more important to give a response (including a wrong one) than acknowledge doubt.
It’s important in the light of the above to keep an open mind and find ways to include the quiet, considered and reluctant (and not just the loudest or most confident) in decision-making.
The first slide here (click it to enlarge) points out a disconnect: the yellow triangle shows that today, patients are mostly involved toward the end of the process - after someone has decided what should be studied, and designed a trial to do that.
Google doesn't make people stupid, as a recent article once claimed. It just does what you ask it to, no more, no less. The challenge, then, is to think about how to be specific enough in your search that you make the search engine do the work for you.
In a trial of a potential prostate-cancer drug getting underway at the Icahn School of Medicine at Mount Sinai in New York, doctors had planned to ask patients periodically about side effects such as nausea. But patient input convinced them to ask additional questions, including how many days patients felt well enough to go to work.
A driving force in the effort to make patients equal partners in designing clinical trials is a nonprofit group called the Patient-Centered Outcomes Research Institute, or PCORI, which was established by the federal Affordable Care Act.
Some statisticians and scientists are optimistic that Bayesian methods can improve the reliability of research by allowing scientists to crosscheck work done with the more traditional or “classical” approach, known as frequentist statistics. The two methods approach the same problems from different angles.
The battle might be described as rigor versus intuition.
Good ideas fail because they cannot cross the cultural barrier between innovation and production.
That is what led me to perform this research.
With all due respect, reading a few things on the internet is NOT research. Why not?
Well, because there is no way to refute the hypothesis that one is formulating with all of that reading, and one may quite easily ignore or discredit-- or perhaps simply never FIND-- material that doesn't support our presuppositions. Genuine research involves being willing to TEST whether or not a hypothesis is plausible by allowing for conditions* in which the hypothesis would be proven incorrect.
The problem with doing this kind of "research" one's self is that selection and perception biases are huge to begin with unless one has already had the kind of training that generally comes along with a terminal degree in a physical science or in medicine, and made even worse by the fact that we as parents are deeply emotionally invested and come to the process with what we WANT to believe must be so (that there must be a "reason" for "X" to have happened to us/our child).
* Suppose that I believe that, just for example, lunar eclipses are caused by unseasonable temperatures. How would my doing a lot of "internet research" allow me to DISprove such a hypothesis? It probably wouldn't-- because think about how I would go about searching that hypothesis and supporting materials out to begin with-- I'd be LOOKING for evidence that supported my hypothesis. Also, "unseasonable" is a pretty relative term. The mechanism is plausibly connected, at least if I didn't know a lot about climate and astronomical observations, so I might not really see any NEED to hunt down material that directly contradicts my personal beliefs in any way.
This is why scientists don't necessarily have much respect for laypersons doing "research" by the way-- it's not that we think that people are dumb, exactly, so much as that they consistently overestimate their own objectivity and metacognition, and fail to appreciate that a willingness to be catastrophically WRONG-WRONG-WRONG is part of the process. An essential part of the process.
At the beginning most people were quite skeptical at the idea that you could go deep inside the brain and find things which corresponded to aspects of the environment…I think it’s taken a while, but there were some people early on who accepted it and of course I’m grateful and of course now the field has blossomed.
Beyond the physiology and medicine prize, a lot of commentators also highlighted that the categories for the scientific fields didn’t reflect that some important findings don’t fit neatly into the category of one science or the other.
Unfortunately, you cannot do DIY research any more than you can do DIY brain surgery. You need doctoral training, just as CMDeux said. If I may elaborate on her points further:
1) You need a Ph.D. in a related subject matter. Otherwise you won't have the content knowledge to be able to fully understand the logic behind the hypothesis being tested or to assess whether the conclusions drawn by the author are supported by the study.
2) You need methodological training. Buckets of it. You need to be trained on experimental methods and other research methodology so that you can assess whether the study's methodology is adequate to truly test what the authors claim to test. And so that you can understand the *limitations* on the findings. Many studies suffer from limited or poor design.
3) You need access to a Ph.D.level statistician. Preferably one with training in the statistical methods being employed by the study. I can't even tell you how frequently statisticians read published studies and shake their heads. They find MAJOR flaws in the statistical methods used. They use words like "all wrong" and "you can't do that with the data".
Okay, so what can we laypeople do? Is there a role for us? I think there is. We can raise concerns, and we can ask questions. We can wonder whether a particular line of research is suggesting something. We can talk to Congress and to NIH about what we think the research priorities should be. And we can post on the "if you were an allergy researcher" thread.
Re: Choosing a 2014-2015 flu vaccineUnfortunately, you cannot do DIY research any more than you can do DIY brain surgery. You need doctoral training, just as CMDeux said. If I may elaborate on her points further:
1) You need a Ph.D. in a related subject matter. Otherwise you won't have the content knowledge to be able to fully understand the logic behind the hypothesis being tested or to assess whether the conclusions drawn by the author are supported by the study.
2) You need methodological training. Buckets of it. You need to be trained on experimental methods and other research methodology so that you can assess whether the study's methodology is adequate to truly test what the authors claim to test. And so that you can understand the *limitations* on the findings. Many studies suffer from limited or poor design.
3) You need access to a Ph.D.level statistician. Preferably one with training in the statistical methods being employed by the study. I can't even tell you how frequently statisticians read published studies and shake their heads. They find MAJOR flaws in the statistical methods used. They use words like "all wrong" and "you can't do that with the data".
Okay, so what can we laypeople do? Is there a role for us? I think there is. We can raise concerns, and we can ask questions. We can wonder whether a particular line of research is suggesting something. We can talk to Congress and to NIH about what we think the research priorities should be. And we can post on the "if you were an allergy researcher" thread.
The inherent biases of investigators and funders color what they perceive as key questions, research priorities, and measures of success. Patients and stakeholders provide a check on those biases and move the research agenda toward questions and evaluation metrics that matter most to them.
By "engagement in research," we refer to the meaningful involvement of patients, caregivers, clinicians, and other healthcare stakeholders throughout the research process—from topic selection through design and conduct of research to dissemination of results.
“What science becomes in any historical era depends on what we make of it” —Sandra Harding, Whose Science? Whose Knowledge? (1991)
Big Data can be used to give any chosen hypothesis a veneer of science and the unearned authority of numbers. The data is big enough to entertain any story.
A move toward making data and analyses open is being promoted in a top-down fashion by several journals, and universities and publishers have been developing platforms to make this possible. But many scientists are resisting this process, and putting forward all kinds of argument against it.
Last year, some Australians, blogging at the Intensive Care Network, found that the number needed to treat stated in a New England Journal paper on targeted vs. universal decolonization to prevent ICU infection was wrong. They blogged about it and contacted the lead author who acknowledged the error within 11 days. It took the journal 5 months to make the correction online.
How to bully a scientist: European Science Foundation demands retraction, threates lawsuit. retractionwatch.com/2014/10/12/eur…
The European Science Foundation refutes any allegation that the process was flawed and considers that the statement cited above is slanderous
Nature won a hard-fought battle against a libel claim just recently, and they called attention to the growth of “lawyering up” by scientists in an editorial just last week.
Sup. Sometimes a good idea is not a great idea and I'm sorry for that. Maybe next time. pic.twitter.com/ndIQdhSe3i
If you had conducted the study with different variables, samples, and hypotheses, how do you anticipate the results would have differed.
There's (seriously) nothing I love more than discussing fecal transplant!
By now you're probably wondering what a poop pill looks like.
short video from NOVA’s series The Secret Life of Scientists and Engineers
Empathy is really important… Only when our clever brain and our human heart work together in harmony can we achieve our true potential.
Patients and the public have lived experiences of a condition, medicine or service that can benefit research teams.
As soon as you aspire to be truly extraordinary, you begin aiming for those extremes of opinion, the coveted 5’s, and implicitly invite the opposite extremes, the burning 1’s — you make a tacit contract to be polarizing and must bear that cross.
the notion that variance is a good thing holds out across nearly every field of endeavor as well as in science
Spend time thinking about the opposite viewpoint.
Find someone to play “devil’s advocate.”
Have you ever been so in love with an idea that you jumped in without thinking about the reality of making it happen?
Step one: Dream and research; if your excitement level is high, proceed to the next step.
Step two: Imagine, consider and learn about the process of bringing it into reality. If your excitement level remains high, proceed to the next step.
Goal of #YODAProject not just to make data available, but to promote its positive use! #openscience Join us! yoda.yale.edu
The Yale University Open Data Access (YODA) Project’s mission is to advocate for the responsible sharing of clinical research data, open science, and research transparency. The Project is committed to supporting research focused on improving the health of patients and informing science and public health.
some medical centers are turning to data that has been collected from patients as part of routine care to get help answering clinical questions in real time. They are using “big data” (large collections of data that need to be analyzed with special tools) to help them make decisions
As patients, we have the right to know how our personal data is being used.
that authority represents a special kind of trust between science and culture. If we step too far outside that protected circle of trust, we may not be able to come back within it again.
“It's palpable that the data is pushing at the doors,” DeSalvo said, with consumers “picking at the lock.”
Humans are remarkably good at self-deception. But growing concern about reproducibility is driving many researchers to seek ways to fight their own worst instincts.
“If your ultimate goal is to cut funding for social and behavioral sciences …I respect your right to try to make that case as Chairman. But please do not compromise the integrity of NSF’s merit review system as part of this campaign.”
But now i think things will come together and will create a movement we coined "Patient Owned Research (POR), in a setting where patients will grant acces to researchers, by giving them the ability to subscribe to their data.
I set out to solve my problem
If you’re a patient living with disease, or a patient advocate acting on the behalf of someone or for a patient group with a medical condition, we’d like to invite you to take part in a unique initiative. The BMJ has committed to improve the patient centredness of its research, education, and analysis articles by asking patients to comment on them. We’d like you to volunteer to become a “patient reviewer."
I was suddenly able to take a nice deep breath and remind myself that The BMJ already has real scientists and healthcare professionals to offer peer review input, so I needn’t lose sleep over methodology minutiae. This first question reminded me as well that the particular focus of the paper I was reviewing did matter to me. In fact, I’d already written – from a patient’s perspective – about the very same issues surrounding controversial cardiovascular risk calculators that were discussed in the paper up for review.
Should patients be “allowed” to do their own research?
Some feel that patients will be harmed through self-experimentation, that they do not understand the risks, and that they may become prey to junk science predators who sell devices that do not meet standards for accuracy and safety.
Can those without medical training contribute to health innovation?
Users can quickly master the technique to wade through claims and counter claims on any subject, discovering what’s known and finding the gaps.
The physicist Max Planck put it best: "Science advances one funeral at a time.”
One place to watch the funeral march of science is America's peer-review process for academic research, which allocates $40 billion each year to new ideas in medicine, engineering, and technology.
I can envision a data-inhaling “Health Clinic Of The Future,” where all participants – doctors, patients, staff – would agree from the outset with a set of common principles, including in particular a shared belief in the value of data (including cost data), data that the clinic would aim to gather and utilize as often and as transparently as possible.
This clinic would ideally attract curious, inquisitive physicians
Dadich emphasizes that it’s not about throwing out design rules and starting from scratch. You need to master the rules so you can effectively break them.
Citations in peer-reviewed articles and the impact factor are generally accepted measures of scientific impact. Web 2.0 tools such as Twitter, blogs or social bookmarking tools provide the possibility to construct innovative article-level or journal-level metrics to gauge impact and influence. However, the relationship of the these new metrics to traditional metrics such as citations is not known.
Prior to me blogging and tweeting about the paper, it was downloaded twice. After, it immediately got 140 downloads buff.ly/1zj8qXh
The first phase of PCORnet is an 18-month initiative, which is just the blink of an eye in “research time.” We are ambitious in our intention to lay the foundation for efficient, patient-centered clinical research as quickly as we can.
“This technology is like a tumor outgrowing its blood supply. It’s growing so rapidly, policy cannot keep up,” Farnan said. “It’s so difficult for regulatory agencies and institutional review boards to grasp the potential downstream complications accessing social media data of patients. But I do think it’s a discussion that needs to happen, because there are amazing and interesting things you can do with it.”
If a researcher wishes their research to be read and cited as widely as possible, then open access is an important tool for this to occur.
Currently, many published research findings are false or exaggerated, and an estimated 85% of research resources are wasted.
List of Lists of Science News Standouts in 2014 (aka a display of inconsistent opinion about such things. ) Is it not ironic that this list of lists pertaining to science lacks one of science's key signs of being on the right track - replicability. Nonetheless, there are some vague patterns including several nods to the ebola virus in parts of West Africa and to the Rosetta mission to a comet.
ROBERT J. BEALL, the president and chief executive of the Cystic Fibrosis Foundation, called his recent decision to sell the royalty rights to his organization’s research a “game changer.”
So far, there is no effort to extend government price controls to venture-philanthropy-derived research.
there is some concern that a profit motive could divert the organizations from their primary mission — helping patients — and create a conflict of interest.
Critics say that perhaps because a higher price means higher royalty payments, the foundation did not do enough to bring the cost down.
Ethicists have long worried about protecting patients from the researchers who experiment on them. But today, with more patients contributing to experiments and sometimes running their own—in what’s known as citizen science—ethicists are asking: Do patients need to be protected from themselves?
There’s something humbling about creating something new and running the risk of public ridicule, but I guess I have pretty low standards when it comes to shame and humility. Really, you have to ask yourself: What’s the worst-case scenario?
far too many journalists and journalism organizations are now directing their allegiance to their advertisers, or their investors, or to a manic scramble for clicks--more and endlessly more, until that becomes a goal in itself, rather than a reflection of whether a news outlet is serving its readers, listeners, or viewers
Laughed out loud @JacquieGS such fun! A science award that makes you laugh, then think ted.com/talks/marc_abr…
In the late 1990s, scientists studying children's health pondered crucial questions they couldn’t answer: Conditions as diverse as asthma and autism were increasing in prevalence, with no clear reason why.
I think there was a scientific dysfunction at the heart of the study that wound up being played out in administrative dysfunction as well
The Myth of Mirror Neurons is a fascinating, game-changing book.
But it offers a valuable lesson in how scientists can be led down the wrong path and how errors can be compounded.
And after all, one of the most important things in science is knowing which questions to ask.
we need an environment where more than just the usual suspects can be heard and where ideas can be challenged—in a friendly way, of course
creating an actual “sparring zone,” a scheduled session for teams to spar, encourages discussion between people at different levels (owners, CEOs, freelancers, and entry-level employees alike)
Fifty years ago, Eugene Garfield published the Science Citation Index (SCI), the first systematic effort to track citations in the scientific literature. To mark the anniversary, Nature asked Thomson Reuters, which now owns the SCI, to list the 100 most highly cited papers of all time.
High-ranking subjects on academic sites included flaws in research, human cells, how the brain works and medical advances. Social media favored papers on scientific errors, the solar system and the universe, and health.
"Three things happen when [women] are in the lab: You fall in love with them, they fall in love with you and when you criticize them, they cry," said Hunt.
"Girls" in the science community meanwhile responded brilliantly to Hunt's lunacy on Twitter.
Hunt’s comments had shocked many people in the room, including journalists and others, and I discussed them with a couple of colleagues, Deborah Blum and Ivan Oranksy, who I’d been sitting next to.
The Royal Society was founded in 1660 there has never been a female president
I’m already on the outs with my medical school’s administration because they censored some of my work
our university president co-authored an article in the Wall Street Journal about how much he believes in academic freedom
It’s easy to want to protect the people you agree with
"Sorry I'm late. I was busy with grant meetings and trying not to cry or fall in love. What did I miss." - Lady Scientist #distractinglysexy
“This year, we wanted our choice to represent a field with a similarly widespread impact on the future of medical practice,” the residents wrote in a post on the Social Media Health Network website. Their choice, they say, reflects the importance of a “union of forces” between providers and patients.
We cling to the desire for simple panaceas that will bestow good health with minimal effort. But biology is rarely that charitable.
The trouble with ignorance is that it feels so much like expertise. A leading researcher on the psychology of human wrongness sets us straight.
Adam Savage, the co-host of MythBusters on the Discovery Channel. On the show, Savage and his co-host Jamie Hyneman put urban myths and rules of thumb to test in visceral, often hilarious ways.
But the challenge to make online disease sleuthing more accurate continues.
Collaboration is a step above cooperation, and it’s rarer than hen’s teeth. When people collaborate, they give up their own vested interests for the greater good (often the greater good is fostered by a “compelling vision” of the future). They’re driven to work through their differences to achieve a goal while trying to understand other’s viewpoints, being open and genuinely willing to change their minds.
One's tautological reasoning is another's freedom of pleonastic expression.
If you're a patient & you know the problems.. You should be included in making the solution #patientsasdesigners #makehealth @joyclee
#Datascientists of the future flock to free online course bit.ly/1pZcUyI #bigdata
In the free six-week course, called Process Mining: Data Science in Action and open to everyone with an internet connection, Van der Aalst will teach techniques to extract valuable knowledge out of big data. Participants are encouraged to apply the techniques using open datasets from applications such as Twitter or Facebook.
Any good researcher needs good search skills. :)
The way they see it, any time you get an artist in a room with a scientist, they’re bound to learn something from each other. “You put everyone in a room and things happen naturally. There’s this constant exchange that we’re not forcing or prescribing—it just happens.” says Yellin.
The big data, by @afrakt - theincidentaleconomist.com/wordpress/the-…
Science thrives on public debate (ideally without punching). Any attempt to preserve the authority of medicine or science by hiding information is doomed to fail, for one reason: The bizarre secrecy that we’ve come to accept in medicine is, in reality, the polar opposite of science.
If scientists have any legitimate authority in the world, it flows entirely from this transparency about the methods and results of our experiments.
Some estimates suggest the results of half of clinical trials are never published. These missing data have, over several decades, systematically distorted perceptions of the efficacy of drugs, devices and even surgical procedures. And that misperception has sometimes harmed patients.
Two endocrinologists wrote an Analysis piece, “Web of industry, advocacy and academia in the management of osteoporosis.”
Improving transparency of the interactions between industry, academia, and advocacy organisations is desirable but reducing those interactions is more so.
Without dissenting voices & diversity of thought, the storyline never changes (& it has to change) @HealthUKTD pic.twitter.com/AVhkLQu8iK
Lots of great ways to learn online. “The 37 Best Websites To Learn Something New” by @kristynazdot buff.ly/1HUIKoL
Learning Objectives
Upon completion of this activity, participants will be able to:
Define healthy user bias in health care research and means to reduce it
Assess means to reduce selection bias in health care research
Assess how to overcome confounding factors by indication in health care research
Evaluate social desirability bias and history bias in health care research
we are adopting an Open Access (OA) policy to enable the unrestricted access and reuse of all peer-reviewed published research funded by the foundation, including any underlying data sets.
This is the first blog on our official nihdatascience.wordpress.com
Overall a rewarding year but just the beginning of addressing a need, which will surely grow, as biomedical research continues to migrate from an observational science to one where research and healthcare is increasingly analytical and data driven.
8 R good, but banning P values & shaming ppl is not productive. Top 10 ways to save science from its statistical self bit.ly/1HGxXb9
True, not all uses of statistics in science are evil, just as steroids are sometimes appropriate medicines. But one particular use of statistics — testing null hypotheses — deserves the same fate with science as Pete Rose got with baseball. Banishment.
Data integrity and validity are challenging topics to get
published in medical journals. The clinical implications
of these matters are not always intuitive to the reader,
and data quality seldom makes headlines in the medical literature,
unless something goes wrong, in which case-related
conversations can make their way to the court rooms and the
lay press.1 Yet, the cornerstone of our ability to make robust
inference and sound clinical decisions is the assumption of the
validity, accuracy, and representativeness of medical research
data.
Are you easily fooled by statistics? Test yourself with the quizzes in this talk: [url]http://t.ted.com/qwHJmrZ[/url]
Oxford mathematician Peter Donnelly reveals the common mistakes humans make in interpreting statistics — and the devastating impact these errors can have on the outcome of criminal trials.
“It involves fluency, or the ability to generate a great quantity of ideas; flexibility, or the ability to switch from one perspective to another; and originality in picking unusual associations of ideas.
A short game sheds light on government policy, corporate America and why no one likes to be wrong.
"Disagreeable givers are the people who, on the surface, are rough and tough, but ultimately have others' best interests at heart," Grant said. "They are the people who are willing to give you the critical feedback that you don't want to hear--but you need to hear."
The scientific method is the most rigorous path to knowledge, but it’s also messy and tough. Science deserves respect exactly because it is difficult — not because it gets everything correct on the first try.
We should make the best decisions we can with the current evidence and take care not to lose sight of its strength and degree of certainty.
Sup. Happy writing day ;) pic.twitter.com/4BsYkbIlaT
You had me at "I read your most recent paper."
Accept your fate as a hamburger – I mean patient. And be nice. Doctors, as busy as they are, are more likely to go out of their way for nice patients than for mean, nasty, overly demanding ones.
connecting with and understanding a patient requires the doctor to appreciate their unique perspective. This unique perspective is expressed through the patients' narrative, which doctors all too often see as a distraction from, ‘getting to the bottom of things’
Empathetic listening is so powerful because it gives you accurate data to work with. Instead of projecting your own autobiography and assuming thoughts, feelings, motives and interpretation, you're dealing with the reality inside another person's head and heart.
As he grows in his confidence of your sincere desire to really listen and understand, the barrier between what's going on inside him and what's actually being communicated to you disappears. It opens a soul to soul flow. He's not thinking and feeling one thing and communicating another. He begins to trust you with his innermost tender feelings and thoughts.
Fewer than 5% of doctors felt it was helpful.
What doctors really think about women who are ‘Medical Googlers’
[url]http://myheartsisters.org/2009/08/19/med-google/[/url]QuoteMe: “My name is Carolyn, and I’m a Medical Googler.”
You, all together now: “Hello, Carolyn!”QuoteI became truly insufferableQuoteI am, apparently, a doctor’s worse nightmare now.
:)
Me too HS, me too.
Some doctors just don't want to work with empowered patients. They can't be bothered, or they are intimidated. Mary Shomon, the About.com Guide to Thyroid, reported that a doctor she used to see wrote "petite papier" (meaning "little paper" in French) on some patient records. The notation referred to the fact that Mary did much of her own research, and would compile questions ahead of visiting her doctor.
If you bring a list to a doctor's appointment, are you neurotic - or “seeking clarity, order, information & control"? nejm.org/doi/full/10.10…
The reminiscence I bristled at most, though, was about ladies — always they were “ladies” — with something he called la maladie du petit papier: the disease of the little paper.
I know that often patients, sensibly, bring lists to make the most of hard-to-schedule and ever-shorter visits with their doctors — indeed, in recent years they've been encouraged to do so.
When a patient pulls out that little piece of paper, I feel a shift in the exam room: the patient taking charge of the agenda, my schedule running late, the reins of the visit loosening in my hands.
Our hard-wired tendency to prejudge is unavoidable, so we need to recognize it in order for it not to control us.
I don't suffer from overthinking, I enjoy it. Depending on the context and how you define enjoy and overthinking.
They integrate the traumatic experience into their identity
I have learned how “to talk about these experiences as an observer and learner, to confess mistakes, bad judgment, weaknesses, and laugh at myself!”
One such myth is that individuals learn best when they are taught in the way they prefer to learn. A verbal learner, for example, supposedly learns best through oral instructions, whereas a visual learner absorbs information most effectively through graphics and other diagrams.
There are two truths at the core of this myth: many people have a preference for how they receive information, and evidence suggests that teachers achieve the best educational outcomes when they present information in multiple sensory modes.
In sum, Lancet Infectious Diseases failed to perform due diligence in selecting an unbiased and professional peer reviewer, allowed unscientific and offensive comments to move forward in the review process, failed to protect my work from being leaked by an unethical reviewer who the journal was unable to follow up on, dragged their feet in taking my case formally to COPE, failed to fully describe the situation to COPE, and shrugged their shoulders at the violation of copyright given "reputational concerns".
Clinical research has reached a pivotal moment, not only with the exponential expansion of tools for data capture as well as data sources, but also with the opportunity to reevaluate how to integrate the information to optimize medical decision making.
Writing in today’s issue of Science, Carnegie Mellon’s Juergen Pfeffer and McGill’s Derek Ruths have warned that scientists are treating the wealth of data gathered by social networks as a goldmine of what people are thinking – but frequently they aren’t correcting for inherent biases in the dataset.
The narrative seems similar to that in the growing number of cases of peer review manipulation we’ve seen recently.
By searching systematically across our systems we have uncovered a number of cases of these potentially fake peer reviewers returning reports across several journals including a number in the BMC series.
It’s obvious that the arrangement benefited scientists. With numbers that large, Packer says it would have taken scientists months or years to finish what took citizens a couple of days.
History is full of examples of “great” papers that turned out to be wrong, while many papers describing huge leaps forward had trouble finding anyone to publish them.
Peer reviewers must be forced to stand up before the community with the same bravery as the author.
in the digital age, not publishing all relevant data is indefensible
What is our "place" as patients/caregivers? Is there really a commitment to patient engagement in health care? If a patient sees a potential solution to a general problem, if we have an idea, if we have a legitimate criticism or concern about an expert study or expert advice .... what is the best way to handle that?
I do believe in a Ratatouille type wisdom that a great idea can come from anywhere, including from a patient/caregiver. How to best capture and develop those valuable patient ideas in the sea of patient pseudoscience is a really interesting question to me.
This is what collaboration #whatifhc looks like! youtu.be/r2E4MCRdc0w - for more on @ImproveCareNow, watch this: youtube.com/watch?v=aKy7UN…
But as we grew these conversations became harder to manage
Literally and figuratively, the Network was getting noisy and quiet at the same time.
big ideas that needed to be shared were getting drowned out by the noise
What we’ve seen is that the people who are the most successful here, who we want to hire, will have a fierce position. They’ll argue like hell. They’ll be zealots about their point of view. But then you say, “Here’s a new fact,” and they’ll go, “Oh, well, that changes things; you’re right.”
Update on 12/3/14: Nature re-ignited the access debate when they announced that they will make all their articles “free to view” (but if you read the fine print: it makes the “dark social” practice of #icanhazpdf and other access work-arounds illegal). To catch up, see my Storify: Five-alarm fire in Open Access Land.
This is a very scary fact about modern medicine: if researchers don't like the results they get from clinical trials, they can simply hide them — and none of us, the people who take the various drugs and devices under testing, will ever know.
Under a new plan, proposed by Health and Human Services last month, researchers who run clinical trials would be made to not only register them on the database within three weeks of signing up the first study participant, but also report a summary of results — no matter the outcome.
Peter is an immunologist and I’m an ocean biogeochemist – very different fields. We started talking about Peter’s latest work and the fascinating demographics of killer flu viruses.
“The field is written in a completely different, alien language to us in immunology” he continued. “Now talk to me in plain language about the research please” he asked.
Open-access publishing advocates want papers to be available to anybody, open-data supporters want data to be downloadable, and those arguing for open source want the software scientists use to be shared with everyone.
Open access has certainly been a driver for predatory publishing, but as the pressure on academics to publish grows and the criteria for academic promotion increasingly expect large volumes of papers, the activities of such predatory journals may find an ever growing market of authors (Bartholomew 2014). We must be clear about the motives of this section of the publishing ‘industry’; predation is aimed, first and foremost, at getting authors’ money rather than ensuring that published papers contribute to science.
What would it look like if you asked 600+ science bloggers to list up to three science blogs, other than their own, that they read on a regular basis, and then visually mapped the resulting data?
In a paper that might be filed under “careful what you wish for,” a group of psychology researchers is warning that the push to replicate more research — the focus of a lot of attention recently — won’t do enough to improve the scientific literature. And in fact, it could actually worsen some problems — namely, the bias towards positive findings.
just by putting an ambitious question out there in front of you, you begin to engage with it
A question is a puzzle: once it has been raised, the mind almost can’t help trying to solve or answer it.
Indeed, the book is deeply disturbing in showing how overenthusiastic scientists, poor science, massive conflicts of interest, and politically driven policy makers can make deeply damaging mistakes. Over 40 years I’ve come to recognise what I might have known from the beginning that science is a human activity with the error, self deception, grandiosity, bias, self interest, cruelty, fraud, and theft that is inherent in all human activities (together with some saintliness), but this book shook me.
Most people instinctively avoid conflict, but as Margaret Heffernan shows us, good disagreement is central to progress. She illustrates (sometimes counterintuitively) how the best partners aren’t echo chambers — and how great research teams, relationships and businesses allow people to deeply disagree.
The full 169 slide deck from Minicourse M5: "Leading radical change: a day of transformation" slideshare.net/NHSIQ/slides-f… #IHI26Forum #radicals
Don’t take any heed, if [anyone] is placing obstacles in your path. You always have pleasure in doing your thing well; it must give you independence from the whole buffoonery into which we have been born.
Since that January 2014 Nature commentary, NIH has begun to address reproducibility from a number of different angles. In 2014, NIH worked alongside journal editors to develop a set of common principles to guide how research results are reported. In 2015, NIH published a series of videos as a resource intended to stimulate conversation in courses on experimental design. In addition to these efforts, NIH’s Office of Research on Women’s Health has led the discussion of the consideration of sex as an important biological variable that should be considered in designing experiments and reporting results.
Welcome to the NIH Precision Medicine Initiative (PMI) Feedback blog!
This first post focuses on the critical research questions that can be uniquely addressed by the cohort to advance precision medicine. Currently, NIH is considering a number of areas where the research using such a cohort may be particularly helpful, including:
1. Determining how an individual will respond to a particular drug based on their genes
2. Discovering new molecular causes for a variety of rare diseases
3. Identifying new ways to predict disease development using an individual’s genes or other physical characteristics
4. Identifying new ways to predict disease using information about an individual’s environment or behaviors
5. Testing new ways to prevent or treat disease using mobile health technologies, such as smartphones or activity trackers
trailers lead to intricate plot hypotheses
#Data Quality by Calvin and Hobbes pic.twitter.com/ltH38usOah
Interesting, MT @LAtimesk: The supposed link between creativity and madness is real, #genetics (in Iceland), @latimes lat.ms/1Gpwz0g
A new study finds that, compared with people employed in occupations not defined as creative, people who pursue careers in writing or visual and performing arts are more likely to carry genetic variations predisposing them to developing psychosis - the kinds of serious disturbances of thinking and emotion seen in schizophrenia and bipolar disorder.
To demystify the idea of the "mad genius," we made a video that dives headfirst into the latest genetic study to link creativity with psychosis. You can also check out the full report we published on the subject right here.
#Asthma: When Data Integration Saves Lives klou.tt/1riq4cr86l7bg
This came about when researchers began thinking out of the box, when it comes to dealing with traditional and non-traditional medical data. They integrated housing and census data, in this case, with that of the data from the diagnosis and treatment of the patients.
A manager asks, “What should I do when someone on the team is excited about an idea, but I’m not?”
Watch for light in the eyes. Does your culture cause idea-generators to protect themselves?
One way to measure success or failure is to take a systematic approach, as we do when we pursue Quality Improvement (QI). Dr. Mike Evans has a new video explaining the concept
When I give a presentation and mention the 97% expert consensus on human-caused global warming, I’m often asked, “what’s the deal with the other 3%?”.
Last week, Spencer wrote a white paper for the Texas Public Policy Institute (TPPI) outlining the contrarian case against climate concerns. TPPI is part of the web of denial, having received substantial funding from both the tobacco and fossil fuel industries, including $65,000 from ExxonMobil and at least $911,499 from Koch-related foundations since 1998, and over $3 million from “dark money” anonymizers Donors Trust and Donors Capital Fund.
RT @HubJHU: @JohnsHopkins researchers use @twitter for insight on #PTSD, #depression, mental illness hub.jhu.edu/2014/12/09/twi… …
The computer algorithms used to collect mental health data from tweets look for words and language patterns associated with these ailments, including word cues linked to anxiety and insomnia, and phrases such as "I just don't want to get out of bed."
Your ability to collate + synthesize material from a clear + critical perspective is first rate and your writing is a pleasure to read.
I would personally hope that others can share your ideas through your writing.
that is a fairly civil way of stating things, given what scientists are like
I am afraid this manuscript may contribute not so much towards the field’s advancement as much as toward its eventual demise.
“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.”
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.
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.
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
we should encourage all medical journals to separate the functions of evidence generation from those of appraisal
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.”
Out of habit I follow your filing system.
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).
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.
New free @nature collection: Statistics for biologists (nature.com/collections/qg…) - blogs.nature.com/ofschemesandme… @NatureBlogs pic.twitter.com/z7FlousvgY
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.
Gr8! Free @JohnsHopkinsSPH online courses: statistics coursera.org/course/statrea… & systematic reviews coursera.org/course/systema… HT @lgcuervoamore
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.
#AAAAI15 Keynote Speech: The Reproducibility Crisis in Science: Causes and Consequences with Dr J. Ioannidis from @StanfordMed
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.
Ionnidas arguing that much of innovation happening outside of medical lit #AAAAI15
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
RT @DrBinks: Scientists respond to BMJs recent string of ad hominem attacks on Industry funded science | The BMJ... fb.me/6FfbatfMs
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.
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…
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
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.
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.
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.
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.
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”.
online community of patient experts
social channels provide direct access to patients willing and eager to engage in the research process
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.”
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.
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.
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.
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.
Fighting words. twitter.com/afrakt/status/…
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.
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.
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.
tis but idle-headed worke; quasi-purloining of my owne humble efforts
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.
.@Richard56 I disagree with your article on peer review. My response is here: timeshighereducation.co.uk/content/the-pe… @trished @tessajlrichards @bmj_latest
Perhaps Trish might be able to design some better studies to investigate the value or otherwise of peer review.
What's worse? Worrying about COI, or worrying about worrying about it? @afrakt insightful meta-thoughts on meta-data twitter.com/afrakt/status/…
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.
publication bias has public health consequences; this case would be good to include in med/resident/fellow education twitter.com/bengoldacre/st…
Physicians' enthusiasm for prescribing imiquimod to treat children with molluscum contagiosum would likely dramatically decrease if they knew about the 2 RCTs.
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
@DavidGilbert43 Thought you might like this? Being weird & thinking differently-sounds familiar... pic.twitter.com/jX5Ja0Cn1w
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.
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.
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.
Most papers are generated for advancement of careers rather than advancement of human knowledge." —Joseph Hyder, professor of anesthesiology, Mayo Clinic
"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.
"ALL THE YOUNG JEDIS"
[url]http://www.curiumco.com/news-master/2016/1/28/all-the-young-jedis[/url]QuoteLuke: Is the dark side stronger?
Yoda: No - quicker, easier, more seductive... like a giving a TED talk.Quotenot including proper controls, omitting data that doesn’t fit expectations, letting assumptions go untested
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