Heroes of CRISPR Through Twitter’s Eyes: A Sequence

Who knows? Perhaps the story behind the story began here, last October, with a tweet about an article in Wired on “The Heroes of CRISPR.”

Zhang, Sarah. The Battle Over Genome Editing Gets Science All Wrong. WIRED Magazine 10.04.15. http://www.wired.com/2015/10/battle-genome-editing-gets-science-wrong/

Maybe that made someone else think that there really ought to be an article with that title. Although, hints of this arose earlier, with articles like “Who Owns CRISPR?” from last April and “Law, history and lessons in the CRISPR patent conflict” from March, or even the 2014 article “First CRISPR-Cas patent opens race to stake out intellectual property“. In any case, the “Heroes of CRISPR” debate which erupted on Twitter (reaching trending status yesterday) has roots far deeper than the article of the same name, which triggered the flood, or even the US Patent Office’s recent insertion into the CRISPR patent battle.

Zhang, Sarah. An Arcane Patent Law May Decide Crispr’s Big Legal Fight. WIRED Science 01.05.16. http://www.wired.com/2016/01/crispr-patent-dispute-gets-really-arcane/

The early tweets were mostly supportive, creating awareness of what is genuinely an eloquent and educational article, especially for those outside the field. There were, however, hints of the later discord even among the earliest tweets. Later concerns arose more from informed readers on the inside of the professions working with CRISPR and aware of the personalities and politics behind the piece, and then snowballed.

* Early Tweets about ‘Heroes of CRISPR’
* The Heat rises
* The Response(s)
* Ongoing debate
* More information

EARLY TWEETS ABOUT ‘HEROES OF CRISPR’

12:48 PM – 14 Jan 2016

1:17 PM – 14 Jan 2016

1:33 PM – 14 Jan 2016

1:47 PM – 14 Jan 2016

2:09 PM – 14 Jan 2016

3:52 PM – 14 Jan 2016

4:01 PM – 14 Jan 2016

4:50 PM – 14 Jan 2016

5:52 PM – 14 Jan 2016

6:22 PM – 14 Jan 2016

6:38 PM – 14 Jan 2016

6:44 PM – 14 Jan 2016

7:26 PM – 14 Jan 2016

8:22 PM – 14 Jan 2016

1:35 AM – 15 Jan 2016

3:17 AM – 15 Jan 2016

7:02 AM – 15 Jan 2016

7:35 AM – 15 Jan 2016

8:11 AM – 15 Jan 2016

9:04 AM – 15 Jan 2016

9:10 AM – 15 Jan 2016

12:26 PM – 15 Jan 2016

THE HEAT RISES

10:31 AM – 15 Jan 2016

10:36 AM – 15 Jan 2016

10:49 AM – 15 Jan 2016

11:18 AM – 15 Jan 2016

12:41 PM – 15 Jan 2016


We Can Now Edit Our DNA. But Let’s Do it Wisely | Jennifer Doudna | TED Talks https://www.youtube.com/watch?v=TdBAHexVYzc

6:55 PM – 15 Jan 2016

THE RESPONSE(S)

4:01 PM – 16 Jan 2016

4:03 PM – 16 Jan 2016

4:11 PM – 16 Jan 2016

4:14 PM – 16 Jan 2016

4:21 PM – 16 Jan 2016

4:24 PM – 16 Jan 2016

5:44 PM – 16 Jan 2016

4:12 PM – 17 Jan 2016

5:51 AM – 17 Jan 2016

PubPeer on Heroes of CRISPR

11:43 AM – 19 Jan 2016

11:57 AM – 19 Jan 2016

1:19 PM – 19 Jan 2016

ONGOING DEBATE

3:19 PM – 18 Jan 2016

7:04 PM – 18 Jan 2016

3:33 PM – 19 Jan 2016

3:48 PM – 19 Jan 2016

3:54 PM – 19 Jan 2016

4:11 PM – 19 Jan 2016

5:06 PM – 19 Jan 2016

5:24 PM – 19 Jan 2016

5:30 PM – 19 Jan 2016

6:56 PM – 19 Jan 2016

6:58 PM – 19 Jan 2016

7:08 PM – 19 Jan 2016

7:45 PM – 19 Jan 2016

7:46 PM – 19 Jan 2016

7:52 PM – 19 Jan 2016

"Heroes of CRISPR" commentary

9:56 AM – 20 Jan 2016

MORE INFORMATION

USPTO: CRISPR Patents: http://patft.uspto.gov/netacgi/nph-Parser?Sect1=PTO2&Sect2=HITOFF&p=1&u=%2Fnetahtml%2FPTO%2Fsearch-bool.html&r=0&f=S&l=50&TERM1=crispr&FIELD1=&co1=AND&TERM2=&FIELD2=&d=PTXT

March 6, 2014. Doudna Patent, Methods and compositions for rna-directed target dna modification and for rna-directed modulation of transcription (US 20140068797 A1). http://www.google.com/patents/US20140068797

Apr 15, 2014: Zhang Patent, CRISPR-Cas systems and methods for altering expression of gene products (US 8697359 B1) http://www.google.com/patents/US8697359 | http://patft.uspto.gov/netacgi/nph-Parser?Sect1=PTO2&Sect2=HITOFF&p=1&u=%2Fnetahtml%2FPTO%2Fsearch-bool.html&r=1&f=G&l=50&co1=AND&d=PTXT&s1=8,697,359.PN.&OS=PN/8,697,359&RS=PN/8,697,359

July 11, 2015: CRISPR – Will This Be the Last Great US Patent Interference? http://blog.patentology.com.au/2015/07/crispr-will-this-be-last-great-us.html

November 9, 2015: The Crispr Quandary:  A new gene-editing tool might create an ethical morass — or it might make revising nature seem natural. http://www.nytimes.com/2015/11/15/magazine/the-crispr-quandary.html?_r=0

December 29, 2015: The CRISPR Patent Interference Showdown Is On: How Did We Get Here and What Comes Next? https://law.stanford.edu/2015/12/29/the-crispr-patent-interference-showdown-is-on-how-did-we-get-here-and-what-comes-next/

January 8, 2016: DuPont in CRISPR-Cas patent land grab http://www.nature.com/nbt/journal/v34/n1/full/nbt0116-13.html

January 12, 2016: For journalists: Statement and background on the CRISPR patent interference process https://www.broadinstitute.org/what-broad/areas-focus/project-spotlight/journalists-background-patent-process

January 12, 2016: USPTO Declares Interference Proceeding to Adjudicate CRISPR Patent Spat https://www.genomeweb.com/business-news/uspto-declares-interference-proceeding-adjudicate-crispr-patent-spat

January 12, 2016: Bitter fight over CRISPR patent heats up http://www.nature.com/news/bitter-fight-over-crispr-patent-heats-up-1.17961

January 13, 2016: USPTO ignites CRISPR/Cas9 patent battle http://www.lifesciencesipreview.com/news/uspto-ignites-crispr-cas9-patent-battle-1280

January 13, 2016: Control of CRISPR, biotech’s most promising breakthrough, is in dispute https://www.washingtonpost.com/news/wonk/wp/2016/01/13/control-of-crispr-biotechs-most-promising-breakthrough-is-up-for-grabs/

January 15, 2016: CRISPR Patent War: Billions at Stake for UC Berkeley http://ww2.kqed.org/futureofyou/2016/01/15/crispr-patent-war-billions-at-stake-for-uc-berkeley/

January 16, 2016: A Brief History Of The Gene-Editing Tool That Is Changing Science, Scientists have now actually watched the DNA-editing tool in action http://www.vocativ.com/news/263157/crispr-cas9/

January 19, 2016: Controversial CRISPR history sets off an online firestorm http://www.statnews.com/2016/01/19/crispr-history-firestorm/

January 20, 2016: A social media war just erupted over the biotech innovation of the century https://www.washingtonpost.com/news/wonk/wp/2016/01/20/is-a-history-of-biotechs-hottest-breakthrough-propaganda/

New Year Surprises

You know the line “I Can’t Believe I Ate the Whole Thing“?

Well, I can’t believe how little I’ve been here. I am absolutely SHOCKED that I haven’t blogged in over a MONTH! Of course, this is because I’ve been so gosh all darned busy, both at work and at home. Just briefly, what all is keeping me away is probably of interest to folk.

* MDMLG
* Opioid Overdose Summit
* Microbes and Mood
* Design Lab & Coloring
* PaGamO (Gaming)
* Graphic Medicine
* Librarians & Artists’ Books
* Sleep Trackers


MDMLG

First, a couple days after the last post, I was a keynote for the November meeting of MDMLG (Metropolitan Detroit Medical Library Group). It was a wonderful experience, a great group. I really enjoyed being with them, and by all reports, they enjoyed my talk. There are rumors that I might repeat it locally, and I’ve been pondering maybe repeating it in a Hangout or something for other folk. Maybe. In any case, here are the slides!

But is an Emerging Technologies Informationist a Librarian?


OPIOID OVERDOSE SUMMIT

Dashed away to visit family for the November holiday, dashed back, and immediately was livetweeting the UofM sponsored Opioid Overdose Summit. Another fantastic event! I’ve been working on a big beautiful Storify of the event for the last month, but the Storify platform developed a glitch and ate the whole thing. Unfortunately, the only engineer who MIGHT be able to restore the file from backup is out on vacation for another week, so for now I can offer you links to the UM Injury Center’s agenda, slides in Slideshare, their videos, and the hashtag #uminjuryctr.


MICROBES AND MOOD

The same week, I also livetweeted the seminar, “Gut Feelings: Microbes, Mood, & Metabolism” from the Depression Center’s Colloquium Series. It was a wonderful triple of presenters on how emerging and historic research is revealing connections between our microbiome (the bacteria that live in and on us) impact our own emotions. Powerful and exciting stuff.

I was making a Storify of this, too, but the same glitch (which prevent some content from being inserted and erases other content) has made it impossible for me to finish, so I’m releasing it in the raw form.


DESIGN LAB & COLORING

The following week I worked on various Storify stories in progress and had a bunch of meetings. One of the meetings was with the new Design Lab that lives on the main floor of the Shapiro Library, where we started planning a workshop which will sneakily use the adult coloring craze as a way to teach things like internet search skills, internet security, paper/art/book preservation concepts, some online tools and toys, etc. The workshop is happening next week, and I think it is going to be super cool. Just to whet your appetite, here is an example.

Original image:
Fleming Building at Sunset

Coloring version of the same image:
UM: Fleming


PAGAMO (GAMING)

PaGamO Screenshot

I didn’t livetweet this, but I felt very lucky that I was able to attend the small presentation by Dr. Benson Yeh on PaGamO for education. The lecture was FANTASTIC and was recorded, so I am hoping for a video to be available soon. In the meantime, here are a few links.

Why one professor created the first-ever social gaming platform for a MOOC http://blogs.coursera.org/post/64423209807/why-one-professor-created-the-first-ever-social

ReImagine Education 2015 Wharton Awards: PAGAMO, The World’s First Event Multi-Student Social Gaming, National Taiwan University; Winner: 1st Place E-Learning http://www.reimagine-education.com/the-winners-individual/8/PaGamO

PaGamO: First-ever Multi-student Social Gaming Platform for General Course (SLIDES) http://s3-eu-west-1.amazonaws.com/pedagogical/website/files/theme/awards/winners/slider/pag/Benson_Wharton%20Award_V2.pdf

PaGamO, the world’s first ever MOOC-based multi-student social game platform https://www.youtube.com/watch?v=WKAWPqRtIe0


GRAPHIC MEDICINE

The next day, we had the first EVER meeting of the newly formed Graphic Medicine Interest Group for the University of Medicine. I took notes and lots of pictures, but the pictures did not end up in Flickr when I tried to put them there, so I have to hope they are in my hard drive backup for the phone. In the meantime, here is a picture of some of the graphic medicine titles I keep in my office when I have consults on the topic.

Graphic Medicine & Comics

Books included in this image:

1) REAL, by Takehiko Inoue https://en.wikipedia.org/wiki/Real_(manga)
2) Graphic Medicine Manifesto, by by MK Czerwiec, Ian Williams, Susan Merrill Squier, Michael J. Green, Kimberly R. Myers, Scott T. Smith http://www.graphicmedicine.org/book-series/graphic-medicine-manifesto/
3) The Bad Doctor, by Ian Williams http://www.psupress.org/books/titles/978-0-271-06754-4.html
4) On Purpose, by Vic Strecher http://www.dungbeetle.org/
5) Neurocomic, by Hana Ros, Matteo Farinella http://www.neurocomic.org/
6) Epileptic, by David B. http://nymag.com/nymetro/arts/books/reviews/10851/
7) CancerVixen, by Marisa Acocella Marchetto http://www.nytimes.com/2005/04/14/books/a-vixen-cartooning-in-the-face-of-cancer.html | http://www.penguinrandomhouse.com/books/107478/cancer-vixen-by-marisa-acocella-marchetto/9780375714740/
8) Can’t We Talk About Something More Pleasant, by Roz Chast http://www.nytimes.com/2014/06/01/books/review/roz-chasts-cant-we-talk-about-something-more-pleasant.html
9) Second Avenue Caper: When Goodfellas, Divas, and Dealers Plotted Against the Plague, by Joyce Brabner and Mark Zingarelli http://boingboing.net/2014/11/30/second-avenue-caper-when-good.html | http://www.cleveland.com/books/index.ssf/2014/11/joyce_brabner_creates_a_graphi.html
10) Diary of a Teenage Girl, by Phoebe Glockner http://stamps.umich.edu/creative-work/stories/phoebe | http://www.npr.org/2015/08/13/431997207/a-diary-unlocked-a-teenage-coming-of-age-story-put-on-film
11) The Spiral Cage, by Al Davison http://the-toast.net/2014/11/03/disability-and-the-work-of-al-davison/
12) Understanding Comics, by Scott McCloud http://scottmccloud.com/2-print/1-uc/
13) Oh Joy, Sex Toy, by Erika Moen http://www.graphicmedicine.org/comic-reviews/oh-joy-sex-toy-2/ | http://www.ohjoysextoy.com/
14) Chop, Sizzle, Wow, by The Silver Spoon and Adriano Rampazzo. https://www.forewordreviews.com/reviews/chop-sizzle-wow/ | http://www.phaidon.com/store/food-cook/chop-sizzle-wow-the-silver-spoon-comic-book-9780714868202/


LIBRARIANS AND ARTISTS’ BOOKS

A few days later, in between my frantically working on the Storifys and an article deadline, I was doublebooked to livetweet two lectures, and had to pick one. So, I picked the one that was related to the library and was being presented by friends and colleagues. It was incredible, and again I took lots of pictures that are hopefully on that other hard drive. I had been hoping to enrich the Storify with those, but that isn’t going to happen until Storify fixes their bug with inserting links into story streams. So, here is another partially completed Storify, this one on the amazing artists working in the library making phenomenal art books. Beautiful.


SLEEP TRACKERS

Pebble Pals

Last but not least, we finished and submitted our article on sleep trackers for consumers and how they may or may not be useful in healthcare. It was an exciting and rewarding project, but I don’t want to say too much until we hear if the article is accepted. It was a LOT of work, and we compared many dozens of devices and tools. Learned a lot, and I hope the article is accepted. I must confess, I found it ironic that my own sleep tracker (Pebble + Misfit) quit working over the holiday. Color me perplexed.

NOW YOU UNDERSTAND?

So you can see why I was so busy I wasn’t getting blogging done? I’ll be a little absent for a while yet, still, since I have a few presentations next week, and piles of meetings coming up. But I’ll have to tell you all about what I’m doing with comics and hashtags and coloring in a future installment. And the weird Storify glitch that is supposedly only impacting me and one other person. Hope you all had a great holiday and end-of-the-year, with expectations of a Happy (and productive and fulfilling) New Year!

Teach Feast: Engaged Learning Through Internships, Badges, e-Portfolios, & Storytelling


Teach Feast 2015: integrative tools for engagement at Michigan http://www.slideshare.net/umhealthscienceslibraries/teach-feast-2015-integrative-tools-for-engagement-at-michigan

I was invited as a last minute fill-in to be part of a panel at the annual Teach Feast festival of learning technologies at the University of Michigan. It was a great learning experience for me, and I hope also for the participants. I learned more about how engaged learning can be a continuum, incorporating relatively small or subtle changes to traditional instruction or going whole hog and literally uprooting a student from their culture and context and positioning them in a new space for a different type of learning experience. Engagement can originate with either student or teacher (or both); it can be collaborative and/or competitive and/or creative. The one part that seemed foundational to all the strategies was reflection, turning your gaze both inward and outward.

My part was on digital storytelling. I’m a big fan of digital storytelling, in case you didn’t know. I like to test new online storytelling tools, and see how they work to support different kinds of stories. My current fascination with comics is based out of my larger enthusiasm for storytelling. I argue that storytelling is part of every academic discipline. It’s obvious that the humanities dissolve if you remove stories. What is history without story? But when it comes to the sciences, people are more likely to have trouble seeing the story as part of the academic process. Of course, case studies in health care, sure, those are stories. And psychology and psychiatry, they don’t work without stories. Social work, yeah, of course. But physics? And engineering? Maybe if you aren’t in the field you have trouble seeing the story, but if you really think about every research paper, every structured abstract is a frame for a story. Every piece of science has a backstory, a motivation, a reason someone wanted to know THIS. Even mathematics. Even when camouflaged, the stories of science are implied. What changes isn’t the presence of the story, but how we tell them, and the tools we use to carry them.

The advantages of digital storytelling are similar to those of printed stories: portable, inclusive, persistent, and reaching a broader audience. One of the great lessons from education is that communication is never one-size-fits-all. The more ways you present important content, the more people will be able to understand it and engage with it. The greater the variety of media you use to tell a story, the more people will hear it. I’m happy to help people find and tell stories, especially science stories. There are a lot of different types of tools and resources in the slides. If I have time, I’ll spend a little more time on specific ones here some other time. If there is something in particular from the slides that you’d like me to talk about, say so in the comments, and I’ll make it a priority.

Insights into the Lived Healthcare Experiences of the Transgendered (#TransHealthFail)

#TransHealthFail

#TransHealthFail

Several years ago, I was in an elevator with a then-local clinician (no longer here) who was complaining to me about how unhappy he was with his clinical practice. He had bought into the practice from another clinician who was retiring, and it wasn’t until he moved here and began actually working there that he discovered half of his patients were transgendered. I still remember how his face twisted up into a knot and his beard waggled as he snarled with disgust about being forced to treat “THOSE people.” He told me, “You don’t know. THEY are EVERYWHERE around here! How could I expect that?” I got out of the elevator as soon as I could. And then I started trying to plan a trans education event for our library. It took some years to be able to make it happen.

I was so excited when I heard about the Trans Health Fail hashtag during the Stanford Medicine X conference. I’ve been wanting to blog about it for a couple months, and finally it is happening. The post is divided into four sections: reports of experiences (mostly with insurance, staff, and clinicians); longer personal testimonials; healthcare reactions; and popular media. There is even a section where trans people have given kudos to the absence of failure, when folk have gotten it right. Most important take-away lessons to learn? Names are important (not just for people who are transgendered, but perhaps especially for them). Privacy is important. Respect is important. Information is important. Access to care is life-saving. Another big part of the conversation centers around the high mortality of transgendered persons, both from violence, and stigma. The basic assumption of what SHOULD be happening in healthcare gets back to “First do no harm.” A lot of the perceived harms which are described could be changed fairly easily just by better education of healthcare professionals of all sorts, and the office and support staff in healthcare facilities. Some of them make complete sense to professionals working inside the healthcare system, but obviously did not to the person on the other side. If you haven’t yet noticed this conversation, it’s worth taking a few minutes to explore. It could save lives. And if you are a healthcare provider who actually can and will treat transgender persons, please be aware of the Provider Self-Input Form for the Trans & Queer Referral Aggregator Database from RAD Remedy

LIVED EXPERIENCES

LIVED EXPERIENCES: Access to Care

!! https://twitter.com/TGGuide/status/629892052914991104

LIVED EXPERIENCES: Insurance

LIVED EXPERIENCES: Healthcare Environments & Systems

LIVED EXPERIENCES: Supporting Roles

LIVED EXPERIENCES: Clinicians

!! https://twitter.com/anaphylaxus/status/639815813495701504

LIVED EXPERIENCES: Children

LIVED EXPERIENCES: Done Right

TESTIMONIES

HEALTHCARE RESPONSE

MEDIA ATTENTION

Atlantic

BitchMedia ??

Buzzfeed

Cosmopolitan

DailyBeast

DailyDot

Distractify

FacesOfHealthCare

Feministing

Fusion

HuffPostGay

HuffPost

Indiana

MarySue

Mashable

Metronews Canada

Mother Jones

NewNowNext

Patient Opinion

Vice

Yes? Or No? Or HOW? Catching a Predator at Birth (Maybe)

Originally posted at the Krafty Librarian blog.


Catching a Predator at Birth

I almost called this post: “Create attention for your article; write a layman’s summary,” which was the subject line from the e-mail we are discussing locally in trying to decide if it is a predatory publisher or not. (Short version of what we did for those who don’t have time to read the whole story: Identity, Authority, Credibility, Language, Editing, Timing, Licensing, Accessibility, Openness, Sources, Resources. Basically, defining a chain of trust.) I’ve blogged here before about the idea of layman’s summaries, a.k.a. plain language abstracts. They have a great tagline. It’s a great idea. My first reaction was, “How can we help?” Obviously, I think the idea is awesome, and I’ve thought so for a very long time, many years. I am far from the only person to think so. Just take a quick look at these few selected quotes.

DC Girasek: Would society pay more attention to injuries if the injury control community paid more attention to risk communication science?
“We also need to call attention to the injuries that continue to take lives, despite the fact that solid solutions for them have been published in our scientific journals. We need research on translating study findings into public action. Epidemiology and engineering remain central to the field of injury control. We must look to the social and behavioral sciences, however, if we hope to overcome the political and cognitive barriers that impede our advancement.”

Alan Betts: A Proposal for Communicating Science
“Given that the future of the Earth depends on the public have a clearer understanding of Earth science, it seems to me there is something unethical in our insular behavior as scientists.”

Jason Samenow: Should technical science journals have plain language translation?
“Some scientists might resist the onus of having to write a lay-person friendly version of their articles. However, I agree with Betts, it’s well past time they do so”

Chris Buddle: Science outreach: plain-language summaries for all research papers
“1) Scientists do really interesting things.
2) Scientists have a responsibility to disseminate their results.
3) Scientists do not publish in an accessible format.
This is a really, really big problem.”

Chris Buddle: A guide for writing plain language summaries of research papers
“A plain language summary is different because it focuses more broadly, is without jargon, and aims to provide a clear picture about ‘why’ the research was done in additional to ‘how’ the work was done, and the main findings.”

Lauren M. Kuehne and Julian D. Olden: Opinion: Lay summaries needed to enhance science communication. PNAS 112(12):3585. doi: 10.1073/pnas.1500882112
“But rather than an unrewarding burden, scientists (and journal publishers) should consider widespread adoption of lay summaries—accompanying online publications and made publicly available with traditional abstracts—as a way to increase the visibility, impact, and transparency of scientific research. This is a particularly important undertaking given the changing science media landscape.”

This is seen as SUCH an important idea that multiple grants were provided to create a tool to assist scientists in doing this well!

Center on Knowledge Translation for Disability and Rehabilitation Research (KTDRR): Plain Language Summary Tool (PLST)

You can find more with this Google Search: (science OR research) (attention OR “plain language” OR “clear language” OR layman OR journalist) (summary OR abstract)

Imagine my excitement when a colleague (many thanks to Kate MacDougall-Saylor) alerted me to a new online publication specifically for this purpose! How PERFECT for Health Literacy Month! A faculty member had asked her if it was a legitimate enterprise. So we looked at the email she’d received, and at the web site.

Dear Dr. XYZ,

We are interested to publish the layman’s summary of your research article: ‘ABC ABC ABC.’ on our website.

The new project ‘Atlas of Science‘ started from 1st October 2015. It is made by scientists for scientists and the aim of the project will be publishing layman’s abstracts of research articles to highlight research to a broader audience.
Scientific articles are often difficult to fathom for journalists, due to the scientific jargon.
Although journalists like to assess the news value quickly, that is by no means simple with most research articles. Writing a short, understandable layman’s summary is a good means to reach this goal.

This makes sense, has a good message, and is accurate about the potential impact so far, but the English doesn’t read as having been written or edited by a native speaker of English, and the formatting is inconsistent. It doesn’t look as if a professional editor did a final review before promoting to the world. Warning Sign #1.

The name of the web site (Atlas of Science) is identical to the highly regarded book from MIT Press and authored by Katy Börner of the Indiana University Cyberinfrastructure for Network Science Center. At first, I thought perhaps they were connected, but quickly realized this was a separate group, simply using the same name. Warning Sign #2.

Most of the rest of the message came directly from the “For Authors” page on the web site (Why, What, Use), except for the instructions.

Submit
∙ Send your summary to info@atlasofscience.org, not later than ##/#/2015.

What do we do with your layman’s summary?
∙ We check the text, and in consultation with you we dot the i’s and cross the t’s.
∙ Your text will be available on the Atlas of Science website, www.atlasofscience.org .
We will actively promote this site to the press.

Please, let us know if you are interested and do not hesitate to contact us if you have any question (simply reply to this email).

This was less worrisome, except … the phrase “not later than” (combined with a date of just over a week to respond) seems to be pressuring the faculty member to respond quickly, without thinking it through carefully, and without time to actually create a well-done plain language summary. Warning Sign #3.

Speaking of a well-done plain language summary, do they explain how to do what they say they want? We checked on the web site. Not really. They tell you what they want, but not how to do it, and they don’t point people to any resources to help them understand what a plain language summary is, what this means, or how to do it. They define no standards, set no guidelines, make only the barest and simplest recommendations (such as word count — 600 words with 2 figures), and do not even mention appropriate reading level. Warning Sign #4.

Does the posted content on the site actually appear to match the stated goals of the site? Not remotely. The pieces posted don’t even match the minimal guidelines they stated in their own criteria. I tested a few of the newest posts. The titles alone (“Regulation of mediator’s expression and chemotaxis in mast cells”, “Minute exocrine glands in the compound eyes of water strider”, “Gene therapy not just counseling for your denim obsession”, tell you these are not plain language, but just to be fair and unbiased, I ran them through a Simple Measure of Gobbledygook (SMOG) Tool, which is only one of several tools and resources available for assessing readability.

Regulation of mediator’s expression and chemotaxis in mast cells
The SMOG index: 20.1
Total words: 766
Total number of polysyllabic words: 180
Total number of sentences: 41

Over 150 words more than the defined limit for the abstract (Warning Sign #5), and written for an audience with a reading level matching those with multiple graduate degrees. The SMOG Index, you see, displays the reading level by number of years of education. 12 is a high school diploma, 16 is a college degree, 18 is a masters, and 20 is well into PhD territory. The average reading level for adults in the United States is roughly 8th grade, meaning that a really well done plain language summary would be written to a SMOG level of 8, at most 12. 20 is a long ways from 12.

Minute exocrine glands in the compound eyes of water strider
The SMOG index: 16.2
Total words: 461
Total number of polysyllabic words: 70
Total number of sentences: 35

Gene therapy not just counseling for your denim obsession
The SMOG index: 18.7
Total words: 573
Total number of polysyllabic words: 79
Total number of sentences: 23

Save your pancreas from diabetes! Your beta cell reserve is critical for prevention and treatment of diabetes.”
The SMOG index: 19.6
Total words: 455
Total number of polysyllabic words: 100
Total number of sentences: 25

It’s easy to see that most of the authors take the word count seriously, and that some of them genuinely tried to reduce the reading level and had an idea of where to start with this. None of them came anywhere close to an 8th grade reading level, and none of them were below college graduate reading level. Warning Sign #6. The writing in the abstracts was highly variable, some included grammatical errors, and there was no sign of editorial oversight. Warning Sign #7.

You get the idea of how the checking is being done. I don’t want to walk you through the excruciating details for every piece, but here are a few more criteria, and then ending with a surprise reveal.

“About Us”: Can’t tell who they are, either individuals or institution. Improper grammar & punctuation. No contact information. Contact form has email address hidden. Warning Signs 8, 9, 10.

Content Sources: Most links are to RSS feeds from major science news services, not unique or locally produced content. For the unique content, authorship is unclear (is author of the plain language abstract the same as the author of the original article?), buried deep in the page, no editor mentioned, and no contact information given for the presumed authors. The links for the original articles go back to PUBMED, not to the original publisher, and nont of them give the DOI number for the articles. Warning Signs 11, 12, 13, 14, 15.

Licensing: For a project of this sort to have the impact it is supposed to on journalists and the public, it would need to have a Creative Commons licensing structure, presumably with attribution. Instead it has “copyright, all rights reserved,” but gives no information on how to get permission to use the content. It appears that the intellectual property rights are held by the website, not by the actual authors. This is (in my opinion) terrible. Warning Signs 16, 17, 18.

Accessibility: Problems using the site on my phone. Tested desktop view, and there are a number of fatal errors, missing ALT tags, empty links, duplicated links, etc. Sloppy, sloppy coding. Nobody’s perfect, but MEDLINEplus has zero fatal errors, just for comparison. If this is from a reputable organization, I’d expect better. Warning Signs 19, 20, 21.

Now, the big surprise! While I was digging around online, I found some of the content, almost verbatim, from an authoritative site! Virtually all of the “For Authors” page is from the Technishe Universiteit, Eindhoven (TU/e). Evidently, they have or had a requirement for graduate students to write a plain language summary of their research prior to graduation. Brilliant concept! The submitted content was reviewed, edited, and selected for possible inclusion in their university research magazine, Cursor. They also had a campus website to host the content. The link for this was broken when I checked today, but the Wayback Machine has several examples over the past several years, including just a few months ago.

The big question now is whether this project is taking the Technische Universiteit model and making it bigger for the world, or was the content stolen from TU/e? There is no way to tell by looking. If this is a genuine project from TU/e, there are some changes they could make to improve the project. If the project is not theirs, I would really love to see the National Library of Medicine recreate a project like this, but done properly. They’ve proven they can. And there is a genuine need.

You Gotta See This! Hacking, Making, & Innovating Health (#MakeHealth)

#MakeHealth Logo

The excitement is building! The schedule is set and the program is printed. The doors open on Sunday at 11am. People who register in advance get free food (tell your friends!). Volunteers (still room for more!) get a t-shirt with this cool logo. And here are a few highlights.

#MakeHealth 2015: Keynotes

KEYNOTES

You’ve already heard about our incredible and inspiring keynote speakers, Susannah, José, and Anna.

#MakeHealth 2015: Symposium

SYMPOSIUM: THE NIGHTSCOUT PROJECT

And you’ve already heard about the Symposium on Monday morning, where we’ll discuss the empowering Nightscout Project, in which patients and families living with diabetes have taken charge, hacked, innovated, and generally re-written the rules and tech in such a powerful way that the corporations, healthcare providers, and even the FDA have had to sit up and take notice. But there’s lots more. LOTS!

#MakeHealth 2015: Hacking

HACKING HEALTH

Hacking means to use things that already exist, and then re-work them to do something new. Examples from what’s coming at MakeHealth include using your cell phone to improve balance, hacking walkers, hacking our guts and our bodies to improve health.

#MakeHealth 2015: Innovating

INNOVATING HEALTH

Innovating means to make something new, to do something in a new way, to look at problems with new eyes, and to think of new solutions. Sunday you can hear from people who are using crowdfunding to solve important problems, who’ve developed new technology for testing cognitive function, gaming physical therapy, and better ways to handle jetlag.

#MakeHealth 2015: Making

MAKING HEALTH

Making means to make something. It might be new, it might not; it might use materials intended for that purpose, or it might involve creating new materials. In the maker movement, “making” may or may not imply novelty, but what it does imply is being able to do it yourself, to customize, to personalize. Examples from our event next Sunday include 3d printed ostomy wafers, new inexpensive prosthetics, and motion capture for real people.

You see why you need to be there? COME!

#MakeHealth RETURNS!

Make Health Fest 2015

We are gearing up for this year’s repeat of the fantastic Make Health event, a maker event themed around healthcare.

Make Health Fest: http://makehealth.us/
(Pssst! Check out #MakeHealth on Twitter)

This year (THIS WEEKEND!!), MakeHealth is a two-day event, with presentations split onto two different days, and booths and demos on Sunday. Check the schedule carefully to not miss something you want to see.

FESTIVAL: Make Health Fest: 11 am – 6 pm, Sunday, October 25th, 2015
SYMPOSIUM: The Nightscout Project, Patient-Driven Innovation, & the Maker Movement: 9:30 am – 12 pm, Monday, October 26th, 2015

This year we have been recruiting some awesome campus and community partners (and the list is still growing!). We are also seeking volunteers of all sorts (and you can volunteer to help at the website). We ESPECIALLY need people to do social media stuff, write up the event wherever you post, livetweet presentations and displays, take pics, help us make the event come alive for those who can’t get here. And if anyone is able and willing to livestream or Periscope, that is another thing we’d love to do (and get requests for) but which hasn’t happened yet. People who volunteer officially get cool swag, so it’s worth signing up as well as just doing it!

If you ARE a presenter, feel free to recruit one of your friends to videotape you and put it up online, but being sensitive to those in the audience who may be less thrilled about being on camera.

We are really excited about this year’s highlights and keynotes:

Susannah Fox was the health lead at the Pew Internet and American Life Project, and is now Chief Technology Officer of the U.S. Department of Health and Human Services (HHS). Whoa. Susannah’s ideas of what qualifies as technology tend toward the broad side. That broad definition makes it easier for her to be absolutely as excited about what makers and real people are doing as much so (if not more) than what professional geeks are doing.

We also have Jose Gomez-Marquez, Director, MIT Little Devices Lab, and Anna Young of Maker Nurse. More information forthcoming about presentations on the patient-led movement to overhaul life with diabetes (a.k.a. the NightScout Project), which you may have noticed under the hashtags #WeAreNotWaiting, #CGMinTheCloud, #DIYPS, #NightScout, #OpenAPS, and probably more.

It promises to be a fantastic event, and we would love your help and participation. If you want to take a look at just how fantastic it was last year, you can do that here.

We #MakeHealth Fest 2014: http://makehealth.us/2014