Tag Archives: open access

Since Katrina, Part Two: How Has Information Access Changed?

Sign: Closed Due to Hurricane Katrina

I mentioned yesterday that Hurricane Katrina changed my life in many ways. Well, my last name might be Swedish, but I’ve never really self-identified as Swedish. My cultural identity has come more from my mother’s side of the family, the Cajun side.

So when Katrina hit, I was riveted; when New Orleans was so damaged I was bereft. I couldn’t find out how the relatives were from the area (they were fine, but I didn’t know). I watched the newscasts almost constantly, for days, until I would shake while watching, couldn’t take it any longer, and felt ashamed that I couldn’t bear to watch. I did what I could from here. I donated money. I helped advertise and promote other Katrina response and recovery fundraising events. That was how I first became part of the A2B3 group which has been so influential in my keeping current about tech trends and tips around the local community and which has informed so many blogposts here. While I’ve been supporting persons with disabilities for most of my career, somehow I hadn’t completely mentally translated that over to the problems they face as individuals and communities in disaster and crisis response, so this (and 9/11) triggered a richer engagement in disaster and crisis preparation and planning, which is also heavily reflected in this blog. And that led to my interest in the SMEM and SMEMchat communities (SMEM = Social Media Emergency Management).

There was one story in particular which I remember vividly from those days which turned into a personal mission. The way I remember it is a little different from how it really happened, but both make good stories. First, the way I tell the story. Even though this isn’t the way it really happened, it could have been.

There was a library school student who was volunteering in the hurricane shelters. I always imagined this being something that happened in the Superdome. Among the evacuees who were not allowed to leave the shelters was a doctor. He was trying to help the other evacuees, but his phone (with his core clinical references) had died, battery had run out of power, and there was no way to recharge it. There were so many people he could help better if he just had a few key resources, but with the libraries under water, loss of power, and being in the shelter, he was dependent on what he remembered. Now, you have to keep in mind, this was two years before the Kindle e-book readers were available, the phones couldn’t hold much, and the batteries were even worse than they are now. What he needed was print, and how on earth was that going to happen?

The student was smart (after all, she WAS a library school student!), and had initiative, so she went and tracked down a listserv for medical librarians, and sent the doctor’s plea for books out to the list. Medical librarians all over the country grabbed books from their weeding piles, and hopped on Amazon to place special rush orders, and had them shipped to … the Dome, of course, right? Mail was delayed (duh). The books finally arrived the day the Superdome was evacuated, and never made it to the doctor. No one knows what actually happened to all those books.

Heartbreaking. Criminal! There has to be a BETTER WAY!! I’ve spent a lot, and I mean A LOT of time brainstorming better ways. I have a vision, a plan in mind, but that’s an entirely different post.

OK, now, what REALLY happened (yeah, I have a vivid imagination). [PS – I’ve been trying to verify this story for a decade, unsuccessfully, and JUST TODAY found the original email to prove it happened.]

Adelaide M. Fletcher: I am an LSU-SLIS student volunteering at a Red Cross Shelter and today I asked one of the Docs there if he needed any reference books. His face lit up and he told me he could really use the Merck Manual and any of the Washington Manuals for Medicine, Pediatrics or Surgery.

I’m sure the situation is similar for other shelters in the Baton Rouge area (there are several), and I would like to collect any of these books and distribute them if possible. If you have any (slightly out of date is okay) or know any medical librarians who would be willing to donate one, please send them to me and I will deliver them to shelters. I can’t speak for shelters outside of the Baton Rouge area, but if I get too many, I’ll try to pass them on through the Red Cross.[Source: MEDLIB-L September 2, 2005]

Adelaide gave her own personal address. People volunteered to send answers to reference questions and look things up. Concern was expressed that mail would be blocked, but then it was verified that her address was in the unscathed zone. The librarians contacted publishers and vendors suggesting they make donations. The books were presumably shipped there, and it is assumed that Adelaide distributed them across multiple shelters. No one ever mentioned the Superdome. No one verified Adelaide’s identity, they just trusted she was who she said she was. As it turns out, she got her MLIS, ended up working in medical libraries, and spent several years continuing the good work she began with this email, working on library recovery from Katrina. From there, she has done a lot of tech geekery in medical libraries, and from there working on community building projects (especially with tech). I already knew she was my kind of person. 🙂 And this sure sounds like a happy ending to that part of the story.

But, what about the information resources? Those books and resources the doc wanted and couldn’t get his hands on? What he was asking for was basically textbooks.

The Merck Manual is now online free to the public from the publisher. Even if he had no phone or battery or computer, if anyone else did, they could look things up or call someone who could.

Merck Manual: http://www.merckmanuals.com/professional

The Washington Manuals are trickier. The Washington Manual of Medical Therapeutics is available online and also as an app for your phone. There is a “free” version for the phone which evidently is fairly limited, and then tries to sell you the full version for a goodly chunk of change.

Washington Manual of Medical Therapeutics with Unbound MEDLINE/PubMed (Free) https://itunes.apple.com/us/app/washington-manual-medical/id533185430?mt=8
Top in-app purchases:
The Washington Manual of Medical Therapeutics, 34th Edition ($74.99) https://itunes.apple.com/us/app/washington-manual-medical/id853052080?mt=8

There is also a copy in the Internet Archive which has over 10,000 views, although I’m not entirely certain that it is a legal or legitimate copy. Indeed, I suspect it isn’t. If that link goes dead, then you’ll know it wasn’t, eh? The official legal copy is this from Lippincott Williams and Wilkins which is available in print and online combined for the same price as the app.

Washington Manual of Medical Therapeutics https://www.lww.com/Product/9781451188516

Textbooks are absolutely critical in medical response to disaster and crisis. I’m glad to see that the ones he wanted are now more accessible, even if there still are barriers to access. I’m also glad to see that there are many MORE medical textbooks available online and as apps (I just wish there were more free ones for those times we really need them). Here are a few more (iOS) examples.

The 5-Minute Clinical Consult 2016
Anatomy and Physiology Made Incredibly Easy
CDC Health Information for International Travel 2014 – The Yellow Book
Davis’ Drug Guide
Infectious Disease Compendium, A Persiflager’s Guide
Lange CURRENT Practice Guidelines in Primary Care 2014
mobilePDR (Physicians’ Drug Reference)
Mosby’s Dental Drug Reference
Mosby’s Drug Reference
Oxford Handbook of Clinical Medicine
Taber’s Medical Dictionary
Tarascon Primary Care

There are a lot more, too. You could easily spend hundreds or thousands of dollars stuffing medical textbook apps into your phone or tablet. And the money is a barrier to having them widely available at the point of need when the need strikes. And these assume that the person reading them is a healthcare provider or student. Sometimes, in disasters, that isn’t the case. When that happens you need high quality accurate information that is right there. Ideally, it would be either something already installed or available where you can find it, or easy to get. I’ve been thinking Kindle’s have way better battery life than most phones, so when my mom died and I inherited her Kindle, I stuffed the extra one chock full of free info that I thought would be good for situations like Katrina. I also bought a solar charger and back up battery and cables. Yeah, call me paranoid, but I want info ready to hand.

But what about alternatives to textbooks, like, oh, I don’t know, journals and articles? “The percentage of open access (OA) articles published in biomedicine in 2005 was 27%,” said Matsubayashi et al in their article, Status of Open Access in the Biomedical Field in 2005. In 2012, that percentage was over half of all newly published articles, per Laakso & Björk. That was articles. The number of open access journal titles in 2005 was 1,988, according to Heather Morrison, who tracks these things and makes both her findings and her data open access as well. By 2013, there were 8,817.

Here are some more resources that weren’t available ten years ago but which we have now. If you can’t afford the medical textbooks, then first aid manuals are a great idea. And when you are thinking about what info you need to respond to trauma, military medical manuals could be a great boon. And we have them now. Most of them aren’t useful for the public, but look for the ones on survival techniques and medical topics.

Internet Archive: US Military Manual Collection https://archive.org/details/military-manuals?&sort=-downloads&page=2

For the most important and useful titles, people have put them in a variety of places online. This way if one goes down, there is a backup.

Special Forces Medical Handbook (2001): http://www.nh-tems.com/documents/Manuals/SOF_Medical_Handbook.pdf

Medical Field Manual (1942): http://www.ibiblio.org/hyperwar/USA/ref/FM/PDFs/FM8-5.pdf

Army First Aid Manual (2002): http://armypubs.army.mil/doctrine/DR_pubs/dr_a/pdf/fm4_25x11.pdf

The Army has made available free PDFs of a lot more of their medical manuals. A lot. Like over 50 other medical titles, everything from training to prevention to evacuation, with specialty manuals for dental, veterinary, radiology, and how to handle casualties, stress management. and much more.

U.S. Army: Doctrine and Training Publications, 8_Series_Collection (Medical): http://armypubs.army.mil/doctrine/8_Series_Collection_1.html

So, our information environment isn’t quite “there” yet, but you know, it is a lot better than it was ten years ago, and it is headed in the right direction.

Advertisements

BioRxiv: A Preprint Archive for the Life Sciences

BioRxiv

I just found out that some of my friends had not yet heard about BioRxiv, the preprint archive for the biological and life science which was launched by Cold Spring Harbor Press last November.

What is the idea behind it? They released a great video yesterday to explain it.


bioRxiv The Preprint Server for Biology https://www.youtube.com/watch?v=EwAMtT3ZIpg

The buzz has reached such influential journals as SCIENCE and NATURE, so you know they are legitimate. This is how they describe themselves.

“bioRxiv (pronounced “bio-archive”) is a free online archive and distribution service for unpublished preprints in the life sciences. It is operated by Cold Spring Harbor Laboratory, a not-for-profit research and educational institution. By posting preprints on bioRxiv, authors are able to make their findings immediately available to the scientific community and receive feedback on draft manuscripts before they are submitted to journals.”

Jon Wilkins gives excellent reasons for participating in his blogpost on Lost in Transcription: open access, speed, normalization, feedback, and “the left side of history.”

Five Reasons Biologists Should Use Preprint Servers http://jonfwilkins.com/2013/11/five-reasons-biologists-should-use-preprint-servers/

I’d also argue that getting your work out in public view under your own name helps to define your claim to the work, and gives you preemptive identification with the concepts. Not to mention that visibility can lead to or support publication (and there is the absolutely delicious feeling that comes when an editor sees the preprint and asks you to submit your article to their journal).

Just to make it even better, bioRxiv readership and use are included in altmetrics.

This might just make an interesting expansion upon placing your work in Deep Blue, and could also help fulfill some grant requirements for placing work in spaces accessible to the public. Issues to ponder.


First posted at THL Blog: http://thlibrary.wordpress.com/2014/03/19/biorxiv-a-preprint-archive-for-the-life-sciences/

#AccessToResearch & More! — Hashtags of the Week (HOTW): (Week of February 3, 2014)

#AccessToResearch

I was pretty excited to see the announcement of the UK Access to Research initiative, a partnership of publishers and libraries across the United Kingdom, which will hopefully extend open access research in ways that may serve as a model for other countries. They made some interesting choices, including requiring people to visit their local library in order to get access.

#AccessToResearch


First posted at the THL Blog: https://thlibrary.wordpress.com/2014/02/03/accesstoresearch-more-hashtags-of-the-week-hotw-week-of-february-3-2014/

Hashtags of the Week (HOTW): Open Access Evolution & Predators (Week of July 15, 2013)

Capricorn

Earlier this week, Irina posted a piece on how open access publications have grown by leaps and bounds under the NIH Mandate. The post highlighted some fascinating data (open data, by the way) showing growth over time and peaks following the implementation of processes to enforce compliance.

Open access publishing is an ecosystem still morphing and adjusting full of creatures that are evolving to fit particular niches. There are many ways in which this becomes apparent.

As you might expect, there are occasional … problems? Call them debates, controversies, defining the landscape, competition for ecological niches, but they come with the territory of evolution.

As with every ecosystem, there are predators and parasites that follow on the heels of opportunity. This week I stumbled on a new-to-me hashtag tracking some of the information about predation and predatory behaviors in the academic publishing environment. Very interesting.

So what happens next? Well, you know how things are when you try to fight predators. You better be pretty darn big and strong and nasty yourself.


First posted at THL Blog: http://wp.me/p1v84h-1lw

Young Genius & Open Access (#DontKnowJack), Part Two

TEDxMidAtlantic 2012 -Jack Andraka

Since part of the conversation with Jack about open access took place within a fast-paced Twitter chat, and part with other people outside of the hashtag, it took some time to paste it all together in sequence. What I ended up with is strict chronological order simply because the conversation was so complicated and interwoven, it was difficult to maintain continuity in any other way. Even if it made part of the conversation more clear, it tended to make the overall conversation more confusing. You have to realize that often these tweets were flying across the wires at the same time, crossing in passing, and that parts of the conversation overlap. As always with Twitter, each communication was limited to 140 characters, meaning that ideas and concepts had to be abbreviated substantially. I hope this works, because Jack made many very important observations illustrating the hidden costs of paywalls.


Jack Andraka 2012 ISEF Winner

Jack Andraka Speaks at TEDxSanJose

TEDatNewYork_0718_IMG_2141_1920

Labrats Screenshot
Labrats: http://labrats.org/

“LabRats is a revolutionary new program that inspires young people aged 11 to 18 to love learning about science and technology. We use the best methods of scouting and other successful youth organizations to build character as well as a strong sense of community while we provide the most engaging hands-on science experience available anywhere.”
http://www.linkedin.com/company/labrats-science-education-program
Also on Facebook: https://www.facebook.com/pages/Labrats-Science-Education-Program/305113940705

Nature Network Screenshot
Nature Network: http://network.nature.com/

Science Buddies Screenshot
ScienceBuddies: http://www.sciencebuddies.org/

Cogito: Mapping the Mind
Cogito: http://cogito.org/

Rare Disease Innovation Driven By and Driving Open Science

PICT0029.JPG

When you hear the word “rare”, don’t you instinctively think of something precious, something unique and valuable, treasured and guarded and preserved with great care and tenderness? I do. The image above is of a medical magical amulet from the famed collection by Dr. Campbell Bonner.

An amulet is, “any object which by its contact or close proximity to the person who owns it, or to any possession of his, exerts power for his good, either by keeping evil from him and his property or by endowing him with positive advantages.” (According to Dr. Bonner’s definition, Bonner, C. Studies in Magical Amulets. Ann Arbor: University of Michigan Press, 1950. p. 2.)

Magical Amulets: http://www.lib.umich.edu/magical-amulets

I was working on the next installment of the Bubble/Blur series, but today is Rare Disease Day. A pretty special day, and pretty near and dear to my heart. Any time I wasn’t in meetings today, I was probably watching the inaugural NIH Rare Disease Day webcast, which was held partly in honor of the 20th anniversary of the existence of the NIH Office of Rare Disease Research. The event went on all day, and continues tomorrow.

Rare Disease Day @ NIH: https://events-support.com/events/Rare_Disease_Day/page/242

I didn’t get to see as much as I wanted. Not to diminish the other wonderful presentations that excited me so much throughout the day, but the most powerful part was at the end of the day, with the screening of the documentary “Here. Us. Now.”

Leading up to the screening, it was obvious from the atmosphere (which conveyed to me a sense of approaching awe) that the event planners knew we were about to see something very, very special.


Here. Us. Now. http://globalgenes.org/here-us-now/ Trailer: https://www.youtube.com/watch?v=LPK6pGFHAa0

“The Hempels’ story reveals the grim truth that rare disease is all too commonplace. Despite unprecedented investment in medical research and development, there are thousands of known rare diseases and disorders without treatments and cures. It’s a broken system moving at a tedious pace, and it leaves heart-rending personal stories in its wake.”

Both parents were experts in business with little knowledge of healthcare before their daughters were diagnosed with a rare fatal genetic disease (Niemann Pick Type C). Guess what? They are now the experts. They used their expertise in business to create what they describe as essentially a new business, a start up. It sounds almost like a “House that Jack Built” kind of story. The business focuses explicitly on doing the needed research, to share the results, to foster the necessary innovation, to drive the discoveries, to save their daughters’ lives.

What I was hearing as I listened and watched the movie were arguments in favor of a wholesale revisioning of the methods and practice and institutions of science, healthcare, publishing, and the governmental oversight agencies responsible for all of these. I want very much to have a chance to see the entire movie. I want to watch it closely. I want the DVD. I want to show it to people. I want to have a viewing here at the University of Michigan. I haven’t seen the entire movie, and I already want it to be required viewing for a wide range of people.

So you can better understand why I feel this way, I want to share just a few snippets of the ideas that most captured my attention in the tweets I sent while watching it, listening to them tell the story of the many barriers they encountered, and the solutions they created with determination, focused intent, planning, love, effort, and lots and lots of money; and the ways they used what they learn to advance the research in this area around the world, strategies they’ve share with other parents and families who share in these explorations and trials.

This is the story of one family. But this is also a story that encompasses virtually every major trend currently emerging in science and healthcare — the need for open access and open science, the empowered patient movement, personalized medicine, the difficult dynamic between transparency and privacy in healthcare and research, the shifting dynamic of how scholarship is defined and how knowledge is shared and how communities are built. These two parents have been transformed by their experiences with rare disease, have seized on to anything and everything that will let them make the difference they are trying to make. As a result, they are not just changing life for their own family, but for countless others. As they tell their story, they continue to change attitudes toward what is best practice in science research and healthcare innovation.

Another friend of mine said it rather well. This is not just what this one family is doing, although the story of the Hempel Family really is a lodestone for the entire conversation, but it is bigger than them. That is because all around the globe, every day, there are other patients and families doing the same kinds of things. Maybe not at the same scale or with the same scope, but trying to change things for themselves and others with their disease. Doing their own research and sharing it. Educating their doctors, who are NOT the experts in these rare conditions. Educating other patients on how to educate their healthcare team. And on and on. And what happens?

For the Hempels, they found not a cure, but a treatment. Something that helps. They were able to find friends and allies who helped them push it through the system, and get FDA approval to use this to help improve the quality of life for their children, and for others with the same condition. It really IS like magic. For the rest of us?

Young Genius & Open Access (#DontKnowJack), Part One

A Broken-Winged Angel

Mardi Gras morning I read the new article from the Chronicle of Higher Education about Aaron Swartz’s death and memorial service.

New, Jake. Memorials for Aaron Swartz Turn to Discussion of How to Honor His Legacy. Chronicle of Higher Education February 10, 2013 http://chronicle.com/article/Moving-From-Sadness-to-Reform/137249/

Then a reader of this blog sent me a message asking me to blog more about this issue. That’s hard. I had to think about it a while, and have been working on various drafts of this post ever since. What I came up with is connecting Aaron’s mission and open access to what we gain, both potentially and actually, from making content available to other youth. This is because I had a very interesting conversation on Twitter Sunday evening with Jack Andraka, as part of the broader Health Care Social Media chat (#HCSM). If you don’t know Jack, read on. But first, a bit more about Aaron.

The HCSM chat started with an extremely active and powerful conversation about paywalls. Paywalls means, in this case, a situation where information or content that you want or need is unavailable to you until you pay money for it. Basically, the information is held hostage. This is not always a bad thing, and sometimes can actually increase safety of the audience, depending on what the content is. When it becomes questionable is when the content is educational, when the information is needed for the progress of helpful science or clinical care, is needed for safety of a community, is being used to shape policy or law that will impact on a community, comes from research paid for with public funds, or related uses and situations. There are many important conversations going on around use about when is it ethically appropriate to restrict access to information, for whom, for what types of information, and under what circumstances. Aaron Swartz had very strong opinions on this, which is ultimately what triggered the chain of events leading to his demise. Here is a small part of what Aaron had to say about this.

“Those with access to these resources — students, librarians, scientists — you have been given a privilege. You get to feed at this banquet of knowledge while the rest of the world is locked out. But you need not — indeed, morally, you cannot — keep this privilege for yourselves. You have a duty to share it with the world. And you have: trading passwords with colleagues, filling download requests for friends.”

Swartz, Aaron. Guerilla Open Access Manifesto. http://ia600808.us.archive.org/17/items/GuerillaOpenAccessManifesto/Goamjuly2008.pdf

Please note that the behaviors he describes — trading passwords, and filling download requests for friends — are illegal based upon the contracts signed by our institutions and libraries with the publishers of the journals and electronic resources. Aaron’s argument was that those contracts were unethical. Beyond unethical, actually, in that the lack of access to critical information is ultimately destructive to the entire human race and the survival of the species, in that this lack delays and prevents needed discoveries, solutions to the problems that threaten the species and life on this world. A broad scope for the argument, but there is substance to it. Yes, there are problems with simply making all information available to anyone, but there are also solutions for many of those problems and refinements to the who/what/what/when/why/how questions information access. Those are things we can work out.

For today, I want to let you see part of the story Jack Andraka shared with us last Sunday, about how paywalls impacted on his research. Here’s the conversation, which I have taken the liberty of embroidering with a few resources and links and videos (and there are a LOT more where these came from, especially the videos). To start with, WHO is Jack Andraka?

Jack is 16 years old. Jack was at the State of the Union address as the guest of President Obama. Why? Because Jack has developed a new test for diagnosing pancreatic cancer, a test that is more accurate (~100%) and faster (168x), and cheaper than anything we already have (26,000x, yes, really). This is critical simply because, as with so many other cancers, early diagnosis improves survival, DRASTICALLY. (Hey, Jack? Next time, look at ovarian cancer, please. KThxBai. Oh, wait. The test you already developed might work. Oh, and lung cancer, too? Awesome!)

You Don’t Know Jack

You Don’t Know Jack | Morgan Spurlock from Focus Forward Films on Vimeo.

You Don’t Know Jack (by Morgan Spurlock): http://vimeo.com/56769793#at=0

Jack has won a bunch of awards for this: Intel® International Science and Engineering Fair® 2012: Gordon E. Moore Award; MIT Think; Smithsonian American Ingenuity Award.


Young Innovator Achieves Childhood Dream at Intel ISEF: http://www.youtube.com/watch?v=pmVzs3-GNBc

He’s given TEDx talks. Lots of them.


Jack Andraka: Detecting pancreatic cancer… at 15: http://www.youtube.com/watch?v=Nq4x8C6Dcf8

For A World Without Cancer : Jack Andraka at TEDxOrangeCoast: http://www.youtube.com/watch?v=r55a0FapF2M

My 3 Cents 0n Cancer: Jack Andraka at TEDxSanJoseCAWomen: http://www.youtube.com/watch?v=n9yuAhusVts

Inventing a Low-Cost Test for Cancer at Age 15: Jack Andraka at TEDxMaryland: http://www.youtube.com/watch?v=VehHPwAVL9g

No surprise, he’s been in the news a bit.

Upbin, Bruce. Wait, Did This 15-Year-Old From Maryland Just Change Cancer Treatment? Forbes 6/18/2012 @ 9:08AM http://www.forbes.com/sites/bruceupbin/2012/06/18/wait-did-this-15-year-old-from-maryland-just-change-cancer-treatment/

Nosta, John. Cancer, Innovation and a Boy Named Jack. Forbes 2/01/2013 @ 11:50AM. http://www.forbes.com/sites/johnnosta/2013/02/01/cancer-innovation-and-a-boy-named-jack/

Tucker, Abigail. Jack Andraka, the Teen Prodigy of Pancreatic Cancer. Smithsonian magazine, December 2012. http://www.smithsonianmag.com/science-nature/Jack-Andraka-the-Teen-Prodigy-of-Pancreatic-Cancer-179996151.html

BBC: US teen invents advanced cancer test using Google. BBC 20 August 2012 Last updated at 19:34ET. http://www.bbc.co.uk/news/magazine-19291258

Jack will be the first one to tell you he could not have done this without open access research articles. And he’ll also tell you about all the barriers and struggles he had when the information he needed wasn’t available in open access journals. So, there we get to the question of open access. Time for Jack to speak for himself. And that will happen in part two of this post.