If you were an allergy researcher ...

[LinksEtc]

Any good researcher needs good search skills.   

Tweeted by @fondalo

"Think you know how to Google? Here are 35 search tips you probably don’t know about"
http://www.digitaltrends.com/computing/the-35-best-google-search-tips-and-tricks/


Just to be clear, I've stopped trying to fight the google-mom label  (online, that is ... IRL is a different story - with most, I'll play the good-mom to keep the peace).


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


Tweeted by @Rubingh

"A New Kind of Incubator Where Painters Rub Elbows With Physicists"
http://www.wired.com/2014/10/pioneer-works-incubator/?utm_content=buffer369d7&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer

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.

[LinksEtc]

For somebody that I think might appreciate this ...


Tweeted by @IncidentalEcon

The big data, by @afrakt - theincidentaleconomist.com/wordpress/the-…

http://theincidentaleconomist.com/wordpress/the-big-data/


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



"Scientists Are Hoarding Data And It’s Ruining Medical Research"
http://www.buzzfeed.com/bengoldacre/deworming-trials

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.

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



"Spilling the beans"
http://www.economist.com/news/science-and-technology/21659703-failure-publish-results-all-clinical-trials-skewing-medical?fsrc=scn/tw_ec/spilling_the_beans

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.

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



"Wrong forces drive osteoporosis treatment – despite evidence of lack of benefit"
http://www.healthnewsreview.org/2015/07/wrong-forces-drive-osteoporosis-treatment-despite-evidence-of-lack-of-benefit/

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.

[LinksEtc]

Tweeted by @phdcomics

https://mobile.twitter.com/phdcomics/status/535050013726875648/photo/1


 


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


Tweeted by @helenbevan

Without dissenting voices & diversity of thought, the storyline never changes (& it has to change) @HealthUKTD pic.twitter.com/AVhkLQu8iK

https://mobile.twitter.com/helenbevan/status/604947859922939906/photo/1


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


Tweeted by @JBBC

Lots of great ways to learn online. “The 37 Best Websites To Learn Something New” by @kristynazdot buff.ly/1HUIKoL

https://medium.com/@kristynazdot/the-37-best-websites-to-learn-something-new-895e2cb0cad4


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


Tweeted by @hhask

"How Do You Know Which Health Care Effectiveness Research You Can Trust? A Guide to Study Design for the Perplexed"

EDITOR’S CHOICE — Volume 12 — June 25, 2015

http://www.cdc.gov/pcd/issues/2015/15_0187.htm

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

[LinksEtc]

Tweeted by @gatesfoundation

"Knowledge is Power: Sharing Information Can Accelerate Global Health Impact"
http://www.impatientoptimists.org/Posts/2014/11/Knowledge-is-Power

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.

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



Tweeted by @NIHDirector

"Data Science @ NIH 2014 – The Year in Review (aka 10 Months as ADDS)"
http://nihdatascience.wordpress.com/2014/12/31/data-science-nih-2014-the-year-in-review-aka-10-months-as-adds/

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.

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



Tweeted by @eliza68

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

---

"Top 10 ways to save science from its statistical self"
https://www.sciencenews.org/blog/context/top-10-ways-save-science-its-statistical-self?tgt=nr

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.

[LinksEtc]

Tweeted by @AcademicsSay

(some language)

https://mobile.twitter.com/AcademicsSay/status/536225048236146689/photo/1


 


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


Tweeted by @hmkyale

Of the Importance of Motherhood and Apple Pie
What Big Data Can Learn From Small Data
Véronique L. Roger, MD, MPH

http://circoutcomes.ahajournals.org/content/early/2015/07/14/CIRCOUTCOMES.115.002115.full.pdf+html

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.

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



Tweeted by @TEDTalks

Are you easily fooled by statistics? Test yourself with the quizzes in this talk: http://t.ted.com/qwHJmrZ

http://www.ted.com/talks/peter_donnelly_shows_how_stats_fool_juries

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.

[LinksEtc]

Tweeted by @JohnNosta

"10 PARADOXICAL TRAITS OF CREATIVE PEOPLE"
http://www.fastcompany.com/3016689/leadership-now/10-paradoxical-traits-of-creative-people?utm_source=facebook

“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.

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



Tweeted by @eliza68

"A Quick Puzzle to Test Your Problem Solving"
http://www.nytimes.com/interactive/2015/07/03/upshot/a-quick-puzzle-to-test-your-problem-solving.html?_r=0&abt=0002&abg=0

A short game sheds light on government policy, corporate America and why no one likes to be wrong.

[LinksEtc]

"ARR OR NNT? What's Your Number Needed To Confuse?"
http://statistically-funny.blogspot.com/2015/07/arr-or-nnt-whats-your-number-needed-to.html


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



Tweeted by @99u

"The Most Undervalued Employee in Your Business"
http://www.inc.com/laura-montini/the-most-undervalued-employee-at-any-organization.html

"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."

[LinksEtc]

"Science Isn’t Broken"
http://fivethirtyeight.com/features/science-isnt-broken/

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.

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



Tweeted by @ResearchMark

Sup. Happy writing day pic.twitter.com/4BsYkbIlaT

https://mobile.twitter.com/ResearchMark/status/537239297129476096/photo/1


 

[LinksEtc]

There's something that is really quite perfect for this thread ... & in more than one way ...

"Biologist talks to statistician"
http://m.youtube.com/watch?v=Hz1fyhVOjr4

This really cracks me up, which I know is kind of weird being a SAHM and all ...but I did pretty good with biology & stats once upon a time ...

but what keeps popping in my mind is that we need some
"Google-mom talks to physician" cartoons, but not all written from the doc's point of view. 

I'm actually quite shy so I could never say this stuff out loud IRL, but I fear my allergy life is now literally like an open book so, at this point, why not put the finishing touches on it ...

maybe save some other doc-patient pairs the lessons I learned the hard way because, really, we should all be on the same team ... maybe something positive can come from the bad stuff.

I think it comes down to communication & expectations & learning styles & stress/time & trying to protect/help/educate ourselves/others, coming at this from 2 different perspectives/backgrounds, talking different "languages".

[LinksEtc]

Some random google-mom thoughts ... perspective influenced by hindsight ....


- It's pretty natural for many patients/caregivers to google health info.  I don't see this trend stopping.  We are trying to learn, to understand, to be active in our care, to protect ourselves & our families.

-----

- Most patients have no idea that many docs feel very negatively about patient "medical googling" ... and see it as a source of bad info, a time waster at appointments, dangerous ... we haven't seen your day to day struggles with things like anti-vax beliefs ... we don't understand how stressed many of you are & that many of you don't have enough time to do what needs doing.

-----

- What has been very eye-opening is how big the chasm has been between my google-mom intentions & doc perceptions.  The docs often "see" a less educated (yet a) think-she-knows-it-all mom who is trying to educate the doc with internet info that the doc is already (of course) familiar with.  Whereas, when I've brought info in in the past, it was usually because I knew the doc was the expert and I was using it as an aid to better understand info, it was an issue that I wanted clarification on ... it was where I was in my knowledge level as a patient/caregiver ... plus I'm a pretty visual learner (& I don't have a great memory) so I felt it helped me in my efforts to communicate my questions/concerns.

Now something happened slowly to me with FA/asthma that I wasn't fully aware of ... I became like ultimate-google-internet-mom ... I dove deep into these topics because I wanted sesame labeled, I became active in gathering info for the forum, helping newbies, etc.  So I went from not only trying to understand ... but then to having my own opinion/preferences on things, wanting real input in the development of treatment plans ... and then moving further into patient engagement/advocacy territory ... yes, maybe a little patient google "research".

-----

A few interesting questions ...


Now this is general ... not about any of my particular ideas.
As a doctor, would you recognize a patient idea as having potential to improve patient care if it came from a medical-googler?

Even if 95% of internet info patients bring to you is not based on good relevant medical info, would you recognize the other 5% as having value?  Has any internet info a patient brought in ever helped in developing a better treatment plan or led to improvements in care?  If no, do you think all the info really had 0% value, or is it possible that you were not open to seeing the potential value of the info?
Are some docs blinded by a bias on this issue?

If you think you have a medical-googler on your hands, would having a short conversation on the topic help with maintaining a good doc-patient relationship?  Setting boundaries, talking perspectives & expectations, discussing (or giving out a printout) of credible internet info.  The last thing most medical-googlers want to do is annoy/offend a doc ... we are not mind readers so if our approach is bothering a doc ... I think it's better for the doc to have a short friendly talk with us rather than get uptight/mad silently ... communication.

Even if the info a medical-googler brings you isn't good in itself, does it still have some value in helping you to see where your patient is in terms of their knowledge of (and in coping with) the medical condition?  Can it help you to better help them?

-----


Just as medical-googlers can make docs feel bad (not trusted, not respected, etc) ... docs can make us feel bad if we feel they don't value what we say, if they don't take our questions/concerns seriously, if they dismiss us or imply that we are stupid, if we feel they do not want us to be active participants in our care. 


Lots of potential doc-patient research issues here.

[LinksEtc]

This comes to mind ...


Tweeted by @AcademicsSay

You had me at "I read your most recent paper."

 


For a lot of us medical-googlers, it's about feeling "heard", about feeling valued & understood & guided ... even if we turn out to be way off in the internet weeds ... even if the doc eventually tells us we are not thinking about things correctly ...a doc sincerely putting in the effort to connect with us where we are, on our level, in a way that we are comfortable with, means the world to us.  Sometimes limitations have to be set ... there simply is not a lot of time at doc appts ... but I'd suggest that there is some value to be found here.


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


I seem to still be thinking about this topic as these quotes popped into my mind ....


If this

Tweeted by @kevinmd

"Patients: Accept your fate as a hamburger"
http://www.kevinmd.com/blog/2014/11/patients-accept-fate-hamburger.html

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.

then yeah, really looking at patient internet info probably doesn't make much sense ....



but



If this ...

"The narrative in patient-centred care"
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2593554/

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’

then that patient internet info has the potential to tell a doc so much about who the patient is, what is important to them, how much they understand, how they learn, etc.



"The 7 Habits of Highly Effective People"
Stephen R. Covey
p. 241

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.

p. 249

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.

[LinksEtc]

So considering stuff like this ....


"Patients' online diagnoses not useful, say doctors"
http://www.bbc.com/news/technology-29458143?utm_content=bufferc193c&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer

Fewer than 5% of doctors felt it was helpful.

&


Tweet response for @GilmerHealthLaw

What doctors really think about women who are ‘Medical Googlers’
http://myheartsisters.org/2009/08/19/med-google/

Me: “My name is Carolyn, and I’m a Medical Googler.”

You, all together now: “Hello, Carolyn!”

I became truly insufferable

I am, apparently, a doctor’s worse nightmare now.

 


Me too HS, me too.

.....


it's likely that there may be some tension for the foreseeable future between docs & googlers.  When you docs have had it with all the bad info & the time wasted dealing with it & and you feel like     .... I get it now, I see that you guys have to vent about us on occasion ....
(Bad info example: 16 years ago, a doctor published a study )

but except in the most extreme cases where repeated sincere communication efforts at arriving at compatible doc/medical-googler styles have failed ... I would ask that you not vent in the medical record & and that you not vent about us by name to another doc that we might have to interact with.

For ex - making a "petit papier" notation in the record ...


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

"Doctors Complaints About Patients' Behavior"
http://patients.about.com/od/doctorsandproviders/a/doctorcomplaints.htm

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.

-----


Tweeted by @HeartSisters

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 Disease of the Little Paper"
http://www.nejm.org/doi/full/10.1056/NEJMp1411685#.VJQ4UumMt_I.twitter

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.

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


it may seem relatively harmless, but I would suggest that is not always the case ...

[LinksEtc]

Docs don't like having patients make negative online comments about them (they may feel the comments are unfair or untrue, they may damage the doc's reputation, the docs may not feel that they are able to defend themselves, etc) ...

well, what's in the medical record is formal & we patients/caregivers don't have much power to control what gets written in it (we likely do not even know if it has started to turn "negative") ... lots of docs can see it and it can make them prejudge us as "problem" patients/caregivers before a new doc even meets us.  It's unfortunate, but if a doc doesn't "like" us or "respect" us, then it can get real, it has the potential to impact care.

For ex .....

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


"Don’t let our desire to be respected get in the way of our oaths"
http://www.kevinmd.com/blog/2014/12/dont-let-desire-respected-get-way-oaths.html

Our hard-wired tendency to prejudge is unavoidable, so we need to recognize it in order for it not to control us.

-------

Re: Reviewing your (child's) medical records

"A Difficult Patient"  (Seinfeld - about medical chart)
https://m.youtube.com/watch?v=ZJ2msARQsKU


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


Tweeted by @HeartSisters

"The surprising way to stay safe in the hospital
Increase your odds by getting staff to listen and to treat you with respect"

http://www.consumerreports.org/cro/magazine/2015/02/the-surprising-way-to-stay-safe-in-the-hospital/index.htm

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


Anything that damages our relationship with other docs can lead to harm.  Doc-patient relationships are already on the rocks, so no need to add to it with "warnings" about us pesky googlers.


Tweeted by @Farzad_MD

"Doctors Tell All—and It’s Bad
A crop of books by disillusioned physicians reveals a corrosive doctor-patient relationship at the heart of our health-care crisis."
http://www.theatlantic.com/magazine/archive/2014/11/doctors-tell-all-and-its-bad/380785/

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




one last thing which may seem obvious ... but problems with googlers often end up being worked out on the internet.      ...  yeah, for better or worse, I have now completely over-analyzed
"the clash".  To be clear, it takes 2 to have a clash of that magnitude ... yes, I share the blame ...
live & learn ... and maybe save a few others from the same fate.



I think that I will leave off with an @AcademicsSay tweet:

I don't suffer from overthinking, I enjoy it. Depending on the context and how you define enjoy and overthinking.

 


I.am.finally.done.


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



"Why we keep telling – and re-telling – our heart attack stories"
http://myheartsisters.org/2011/01/21/retelling-heart-attack-story/

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!”

[LinksEtc]

The science myths that will not die
False beliefs and wishful thinking about the human experience are common. They are hurting people — and holding back science.

http://www.nature.com/news/the-science-myths-that-will-not-die-1.19022?WT.mc_id=TWT_NatureNews

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.

 


Ok, fine, I have a preference for visual.

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


Bias


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


Tweeted by @Skepticscalpel

"How a top medical journal failed to protect my work and the broader scientific community"
http://www.chelseapolis.com/1/post/2014/11/how-a-top-medical-journal-failed-to-protect-my-work-and-the-broader-scientific-community.html

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".

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


Not related to the above .....

A certain academic that I know IRL was reviewing a paper the other day.  I asked him what happens if you make a mistake, if you have errors in your review.  He smiled and said that nobody reviews the reviewers & I'm thinking the whole process does not seem ideal.  Shrug.  Interesting stuff, but it's probably time to let this thread drop soon.






 

[LinksEtc]

Tweeted by @ElaineSchattner

"Population and Personalized Medicine in the Modern Era"
http://jama.jamanetwork.com/article.aspx?articleid=1935130&utm_campaign=social_111614&utm_medium=twitter&utm_source=@jama.201

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.

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


Tweeted by @Joyclee

"Scientists Warn About Bias In The Facebook And Twitter Data Used In Millions Of Studies"
http://www.forbes.com/sites/bridaineparnell/2014/11/27/scientists-warn-about-bias-in-the-facebook-and-twitter-data-used-in-millions-of-studies/

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.

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


Tweeted by @PalGulbrandsen

"Publisher discovers 50 manuscripts involving fake peer reviewers"
http://retractionwatch.com/2014/11/25/publisher-discovers-50-papers-accepted-based-on-fake-peer-reviews/

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.

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



Tweeted by @NatGeoPhotos

"Hidden Cameras Reveal the Secret Life of the Serengeti"
http://tinyurl.com/o3e8rga

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.

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


Tweeted by @sgreene24

"Science Journals Have Passed Their Expiration Date -- It's Time for the Publishing Platform"
http://insights.wired.com/profiles/blogs/science-journals-have-passed-their-expiration-date#axzz3J8rGlQGq

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

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


Again, I'm not agreeing or disagreeing ... just collecting interesting viewpoints.