If you were an allergy researcher ...

[LinksEtc]

Just throwing ideas together ...


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

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. 

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Tweeted by @michaelseid11
ImproveCareNow - Co-Production
https://m.youtube.com/watch?feature=youtu.be&v=mljKTqHcdiA

&

This is what collaboration #whatifhc looks like! youtu.be/r2E4MCRdc0w - for more on @ImproveCareNow, watch this: youtube.com/watch?v=aKy7UN…

"Colson's Story"
https://m.youtube.com/watch?feature=youtu.be&v=r2E4MCRdc0w

"#GoFullCIRCLE | Watch Now, Share Now"
https://m.youtube.com/watch?v=aKy7UN9liMk

---


"Communities are made up of smaller communities"
http://improvecarenowblog.org/2015/04/21/communities-are-made-up-of-smaller-communities/

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

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Thinking how the terms "medical googler" & "patient engagement" have such different connotations, yet are often deeply connected.

[LinksEtc]

Tweeted by @TomVargheseJr

"13 qualities Google looks for in job candidates"
https://agenda.weforum.org/2015/04/13-qualities-google-looks-for-in-job-candidates/?utm_content=buffer706ac&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer

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.”

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


Tweeted by @CMichaelGibson

Nature makes all articles free to view
Publisher permits subscribers and media to share read-only versions of its papers.

http://www.nature.com/news/nature-makes-all-articles-free-to-view-1.16460?utm_content=bufferdc310&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer


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


Tweeted by @SusannahFox

"Open Access to Publicly-Funded Research: Let Them Eat Cake?"
http://e-patients.net/archives/2009/05/open-access-to-publicly-funded-research-let-them-eat-cake.html

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.

---

https://storify.com/SusannahFox/non-scientists-should-care-about-open-access

[LinksEtc]

Tweeted by @charlesornstein

"Why it's about to get a lot harder to hide the results of medical studies"
http://www.vox.com/2014/12/6/7344357/clinical-trials-transparency

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.

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


Tweeted by @fischmd

"Does Hyper-specialization in Science Stifle Innovation?"
http://www.creativitypost.com/science/does_hyper_specialization_in_science_stifle_innovation

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.

[LinksEtc]

Tweeted by @ivanoransky


Free Access to Science Research Doesn't Benefit Everyone
There is a lot of promise in open access. But there are a lot of problems too.

http://www.theatlantic.com/technology/archive/2014/12/free-access-to-science-research-doesnt-benefit-everyone/383875/?single_page=true

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.

&


"Authors and readers beware the dark side of Open Access"
http://onlinelibrary.wiley.com/doi/10.1111/jan.12589/full

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.

&


"A Network of Blogs, Read by Science Bloggers"
http://www.scilogs.com/from_the_lab_bench/a-network-of-blogs-read-by-science-bloggers/

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?

&


The Replication Paradox:” Sans other fixes, replication may cause more harm than good, says new paper
http://retractionwatch.com/2015/07/06/the-replication-paradox-sans-other-fixes-replication-may-cause-more-harm-than-good-says-new-paper/

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.

[LinksEtc]

"Forget Resolutions, What’s Your "Beautiful Question" For 2015?"
http://www.fastcodesign.com/3040821/forget-resolutions-whats-your-beautiful-question-for-2015

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.

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


Tweeted by @TEDTalks

"Where good ideas come from"
http://www.ted.com/talks/steven_johnson_where_good_ideas_come_from?language=en

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


Tweeted by @Richard56


Are some diets “mass murder”?
http://www.bmj.com/content/349/bmj.g7654

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.

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


"Dare to disagree"


http://www.ted.com/talks/margaret_heffernan_dare_to_disagree?utm_source=t.co&utm_content=awesm-publisher&utm_medium=on.ted.com-static&utm_campaign=&awesm=on.ted.com_Heffernan

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.

[LinksEtc]

Tweeted by @helenbevan

The full 169 slide deck from Minicourse M5: "Leading radical change: a day of transformation" slideshare.net/NHSIQ/slides-f… #IHI26Forum #radicals

http://www.slideshare.net/mobile/NHSIQ/slides-for-transformation-minicourse-with-extrasfinal

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


Tweeted by @99u

"Albert Einstein on the Fickle Nature of Fame, the Real Rewards of Work, and the “Whole Buffoonery” of the Cultural Establishment"
http://www.brainpickings.org/2014/12/09/albert-einstein-fame-letter/

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.

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


Tweeted by @NIHDirector

"Enhancing Reproducibility in NIH-supported Research through Rigor and Transparency"
Posted on June 9, 2015 by Sally Rockey and Larry Tabak
http://nexus.od.nih.gov/all/2015/06/09/enhancing-reproducibility-in-nih-supported-research-through-rigor-and-transparency/

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.

&


"Research Questions for the Precision Medicine Initiative Cohort"
http://feedback.nih.gov

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

(This is a .gov site so I think I'm allowed to quote freely)

[LinksEtc]

A very serious on-topic subject for a FA-Jedi ...


Tweeted by @MarshallCrook

Journey Into the Mind of a 'Star Wars' Fanatic
http://www.wsj.com/video/journey-into-the-mind-of-a-tar-wars-fanatic/5BA5965D-0D89-4AAA-B48D-6DDC87CFB8F7.html

trailers lead to intricate plot hypotheses

 


... and I thought maybe I was taking this Star Wars thing a bit too far. 

[LinksEtc]

Tweeted by @AcademicSay

Academic writing.

https://mobile.twitter.com/AcademicsSay/status/542664737339998208/photo/1

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



Tweeted by @TomVargheseJr

#Data Quality by Calvin and Hobbes pic.twitter.com/ltH38usOah

https://mobile.twitter.com/TomVargheseJr/status/543457139562266624/photo/1

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



Tweeted by @ElaineSchattner

Interesting, MT @LAtimesk: The supposed link between creativity and madness is real, #genetics (in Iceland), @latimes lat.ms/1Gpwz0g

"Madness and creativity: Is genetic vulnerability to one a source of strength in the other?"
http://www.latimes.com/science/sciencenow/la-sci-sn-madness-creativity-genetic-vulnerability-20150608-story.html

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.

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



Tweeted by @GeneticsUpdate

'Mad genius' no more: the genetic link between creativity and psychosis is pretty weak
https://trove.com/a/Mad-genius-no-more-the-genetic-link-between-creativity-and-psychosis-is-pretty-weak.kRbSA?nocrawl=1&utm_medium=twitter&ts=1437027037&utm_source=sns&utm_campaign=hosted

http://www.theverge.com/2015/7/14/8945813/creativity-bipolar-schizophrenia-genetics-mad-genius

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.

[LinksEtc]

Tweeted by @Aller_MD

#Asthma: When Data Integration Saves Lives klou.tt/1riq4cr86l7bg

---

http://blogs.informatica.com/perspectives/2014/12/10/when-data-integration-saves-lives/#fbid=9_K_q6CIot5

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. 

[LinksEtc]

"THEY’RE EXCITED – YOU’RE NOT"
http://leadershipfreak.wordpress.com/2014/12/15/theyre-excited-youre-not/

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?

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


Tweeted by @SusannahFox


"Public Q&A: How do you know when you are heading in the right – or wrong – direction?"
http://susannahfox.com/2014/12/12/public-qa-how-do-you-know-when-you-are-heading-in-the-right-or-wrong-direction/

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

[LinksEtc]

These are the best arguments from the 3% of climate scientist 'skeptics.' Really.
https://www.theguardian.com/environment/climate-consensus-97-per-cent/2016/jul/25/these-are-the-best-arguments-from-the-3-of-climate-scientist-skeptics-really

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.

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



Tweeted by @HopkinsMedicine

RT @HubJHU: @JohnsHopkins researchers use @twitter for insight on #PTSD, #depression, mental illness hub.jhu.edu/2014/12/09/twi… …

-----------

"Analysis of Twitter posts could provide fresh insight into mental illness trends"
http://hub.jhu.edu/2014/12/09/twitter-mental-illness-tracking#

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."

[LinksEtc]

Tweeted by @ResearchMark


Have you heard the latest stats joke?


https://mobile.twitter.com/ResearchMark/status/543772343663747075/photo/1



 


Too funny.

[LinksEtc]

Forgive me ... I am feeling a bit snarky ...

Please don't quote as I may delete.

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


I now feel with a few of my latest threads that I have sufficiently earned that

self-performed literature comment

yes, it made me mad at 1st, but I can almost laugh about it now.

&

to the academic in my life who sometimes mockingly asks

"Are you doing your PhD?"

when I am deep in FAS thought ....


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


I have put a lot of myself into this place over the last few years and I have to cut back on my time here ...

but as I prepare to start writing my regulations comment,

I will instead remember the words of one of my college professors ...

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.

I don't know if I'll be able to live up to that, especially these days when quiet time is hard to find ...

but this issue has been a passion of mine and it will be a pleasure to try.

[LinksEtc]

CM from another thread:

that is a fairly civil way of stating things, given what scientists are like

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


Tweeted by @AcademicsSay

25 Brutally Honest Peer Review Comments From Scientists
When scientists want to publish their work, other scientists have to review it to make sure it’s up to scratch. Sometimes they are mean.

http://www.buzzfeed.com/h2/pulse/kellyoakes/more-like-smear-review-amirite

I am afraid this manuscript may contribute not so much towards the field’s advancement as much as toward its eventual demise.

 

[guess]

A Statistician's 'Big Tent' View on Big Data and Data Science

Separating the hype from the use.