Category Archives: Enterprise

“And I said, ‘Yeah, man. Totally!'”: The Obamacare Vloggers


NicePeterToo: I Met the President: https://www.youtube.com/watch?v=vEcxXDWqs-A

You really should watch the video embedded above. Last week, President Obama invited several of the young folk with exceptionally active Youtube channels to come visit and talk with him about ideas for how to really use Youtube effectively to get out information about the Affordable Care Act. Now, I say “young folk” from my perspective as an admitted old fogie who remembers life before the Internet existed. I mean, really, before punch card programming. OLD fogie!

Anyway, we spend a lot of time in in various online healthcare communities talking about the power of social media for outreach. We all know that Obama works with masters in using social media effectively, and I’ve blogged about that here many times ([1], [2], [3], [4], [5], [6], [7]). Well, he’s done it again!

Last week, President Obama invited a variety of influential Youtube voices to the White House, asking them to help him reach the American youth to enroll in health insurance programs before the March 31st deadline.

Montage: The Obamacare Vloggers

“Attending the meeting were Hannah Hart, creator of the Drunk Kitchen series; Iman Crosson, an Obama impersonator known online as Alphacat; Michael Stephens, the man behind the YouTube channel “VSauce;” Benny and Rafi Fine, creators of the “Kids React” series; Mark Douglas, Todd Womack, and Ben Relles, who introduced the world to Obama Girl six years ago; Peter Shuckoff and Lloyd Ahlquist of “Epic Rap Battles of History” and Tyler Oakley, an LGBT rights advocate with millions of online fans.”
Obama Enlisted YouTube Personalities For Final Health Care Enrollment Push Last Week: The president asked viral video creators to help boost Obamacare enrollment ahead of the March 31 deadline at a White House summit last week. http://www.buzzfeed.com/evanmcsan/obama-enlisted-youtube-personalities-for-final-health-care-e

Another brilliant use of social media. My kid regularly watches about half of these, which means so do I (and, as an aside, you REALLY might enjoy the new “Kids React to Rotary Phones” which made me ROFL. Really. And made my kid ask me if I know what a rotary phone is. Really). That’s what the introductory video is for this post — famous vlogger NicePeter introducing the topic of why and how he met the President, in real people language, and promising more to come. I can’t wait to see what he says, and the other vloggers! Nice Peter looks to be the first of the group to get a video out, but some of them have added this link to existing videos.

Tell a Friend: Get Covered
Tell a Friend: Get Covered: http://www.tellafriendgetcovered.com

Now, WHY Obama is doing this is the million dollar question. Literally. Well, at least that much, probably a lot more. You see, the logic behind pretty much all health insurance plans is that you have LOT of people in the plan, of all ages and all types of health, and then the need for resources will average out over the groups. So to make this work, you need young folk and old, healthy and not-so-healthy. If that doesn’t happen, well, the whole system breaks down, or costs everyone more money than was expected. The way my budget works, those two things amount to pretty much the same problem.

“He needs them to buy health insurance, and, in some cases, spend hundreds of dollars a month for it. If they don’t, the new insurance marketplaces — the absolute core of Obamacare — will be filled with older, sicker people, and premiums will skyrocket. And if that happens, the law will fail.” Obama’s last campaign: Inside the White House plan to sell Obamacare:
http://www.washingtonpost.com/blogs/wonkblog/wp/2013/07/17/obamas-last-campaign-inside-the-white-house-plan-to-sell-obamacare/

You’ve probably already figured out that there must be a problem getting young folk to register for Obamacare. Well, it’s true. Sort of. There is a genuine need for more young folk to enroll, but the data about what’s going on is both worrisome and hopeful. Look at the title of this piece.

Bruce Japsen. Less Than A Third Of Enrollees In Obamacare Under Age 34. Forbes 1/13/2014 @ 5:23PM. http://www.forbes.com/sites/brucejapsen/2014/01/13/less-than-one-third-of-obamacare-enrollees-are-under-34/

That is based on enrollment data from the government, and if you read the article, it’s actually fairly positive about youth liking Obamacare and just waiting to enroll because, you know, they’re young, and that’s ‘how they roll.’ Here’s last quarter’s enrollment data.

Figure 2: Trends in the Number of Youth Who Have Selected an Obamacare Plan

During December, there was a more than 8-fold increase in the number of young adults (ages 18-34) who have selected a Marketplace plan through the FFM.


ASPE: Health Insurance Marketplace: January Enrollment Report: For the period: October 1, 2013 – December 28, 2013: http://aspe.hhs.gov/health/reports/2014/MarketPlaceEnrollment/Jan2014/ib_2014jan_enrollment.pdf

The next logical question might be, well, why is he doing this so late? Didn’t the Obama team think of reaching out to youth before it got so late? Actually, they’ve been reaching out for quite a while. I’ll post several examples below. The gist of this late push is that even though the numbers are rising, and the expectation was that youth would probably register late, there have been some unfortunate snafus (such as the web page being down on the day of the biggest push for youth enrollment) and that the expected lateness makes for a bit of nervousness and a desire to ensure that the idea of “registering late” doesn’t end up meaning, “Oops! I forgot!” After all, there are consequences to forgetting, both for the youth as individuals and for the good of the entire program.

OBAMA REACHING OUT TO YOUTH

Obama pitches Affordable Care Act to youth at White House Published on Dec 4, 2013

Obamacare: What if not enough young, healthy people enroll? (+video)
The 18-to-34-year-old cohort is the most coveted for the exchanges, and should be about one-third of enrollees, though there are backstops if enrollment falls short.
By Linda Feldmann, Staff writer / December 5, 2013
http://www.csmonitor.com/USA/DC-Decoder/2013/1205/Obamacare-What-if-not-enough-young-healthy-people-enroll-video

Evan McMorris-Santoro. Youth Obamacare Enrollment Groups Surprised To Learn Obamacare Website Won’t Work On National Youth Enrollment Day: “Obviously, it’s unfortunate,” says one youth enrollment leader. The Obama administration is giving applicants who save applications on Feb. 15 extra time to work around downtime on the site. Buzzfeed posted on February 12, 2014 at 3:13pm EST. http://www.buzzfeed.com/evanmcsan/youth-obamacare-enrollment-groups-surprised-to-learn-obamaca

David Morgan. Obamacare enrollment push for the young enters 11th hour. Reuters Fri Feb 14, 2014 1:02am EST
http://www.reuters.com/article/2014/02/14/us-usa-healthcare-enrollment-idUSBREA1D06X20140214

Adam Aigner-Treworgy and Jim Acosta. Obamacare enrollment hits 4 million, push underway to hit revised goal. CNN February 25th, 2014 08:48 PM ET, Updated 8:48 p.m. ET, 2/25/2014. http://politicalticker.blogs.cnn.com/2014/02/25/obamacare-enrollment-hits-4-million-push-underway-to-hit-revised-goal/

Get Covered (with NBA Star Kevin Johnson) http://www.youtube.com/watch?v=vndF-I4Cq5k

University of Michigan Trends & Technology Team, February 2014

I’ve been part of the UM Trends & Tech Team for several years, and have always found it to be one of my most rewarding campus groups. We had a meeting earlier today, and I participated via Google Hangout. People often ask me where I find the cool things I share with others. Well, it isn’t something anyone can do alone. I follow lots of news services, blogs, and similar online resources, but I also depend on great people and communities, like this one.

For today’s meeting, the notes were exceptionally clear, and I was able to catch almost all of the resources mentioned. We had a few main topics, and our usual round-the-table sharing session (which is the best part, in my view). The two topics were badges and project management. While these aren’t explicitly medical or library focused, both are topics of importance to the work we do. Screenshots and links are in the slideshow above. Brief overview descriptions below.

BADGES

The idea of “Badges” is one of the recent innovations in education, and a subset of “gamification,” as mentioned in the new Horizon Report. You’ll understand the idea of Badges if you think of scouting, and the way kids train to win badges in specific skillsets. Here’s the official definition.

“A badge is a symbol or indicator of an accomplishment, skill, quality or interest. From the Boy and Girl Scouts, to PADI diving instruction, to the more recently popular geo-location game, Foursquare, badges have been successfully used to set goals, motivate behaviors, represent achievements and communicate success in many contexts. A “digital badge” is an online record of achievements, tracking the recipient’s communities of interaction that issued the badge and the work completed to get it. Digital badges can support connected learning environments by motivating learning and signaling achievement both within particular communities as well as across communities and institutions. (Source: Erin Knight White Paper)” From: MozillaWiki: https://wiki.mozilla.org/Badges

Here are some of the badges resources our team has found and is discussing. This highly selected set includes examples of how folk are using them, tools to support badge projects, and more.

AADL Summer Game http://play.aadl.org/
Badg.Us http://badg.us/en-US/badges/
Badgelab https://badgelab.herokuapp.com/
BadgeWidgetHack http://badgewidgethack.org/
Credly https://credly.com/
Open Badges http://openbadges.org/
Purdue Passport http://www.itap.purdue.edu/studio/passport/

PROJECT MANAGEMENT

Most of us have some sort of project we’re trying to manage, either at work or at home, even if it only means keeping our own lives a bit more organized. There was a subgroup of the team that has been looking at different project management tools, testing them out, and coming back sharing thoughts on what they like or don’t like. Here is a small group of the tools and add-ons mentioned in today’s meeting.

Asana https://asana.com/
Asana + Box http://blog.asana.com/2014/02/boxintegration/
Asana + M-Box http://www.itcs.umich.edu/storage/box/
Basecamp https://basecamp.com/
Evernote https://evernote.com/
Evernote – Kustomnote https://kustomnote.com/
Evernote – Taskclone http://www.taskclone.com/
Evernote app center http://appcenter.evernote.com/
Evernote Food http://evernote.com/food/
JIRA https://www.atlassian.com/software/jira
Trello https://trello.com/
Zoho https://www.zoho.com/projects/

SHARING

My favorite part of the meetings is always when we go around the table. People share projects they are working on, tools they are using, challenges they are struggling to overcome, tips, tricks, tools, news, updates, and more. Sometimes everyone has already heard about something, sometimes no one has except the person talking about it. Some of the tips were about hardware (Chromecast & Google Cast, DASH, Kitkat, Mophie). Many are always about mobile apps, which our group seems to love. There are usually a few coding tools (Fluid, Codepen). Of course, the best part is hearing what people are doing with all of these (especially the CIO using Ideascale and LSA’s brilliant social media campaign #powerof5), but if I added that in for everything, this post would be way too long. You’ll just have to explore the links on your own, or come to the meetings, eh?

Chromecast http://www.google.com/intl/en-US/chrome/devices/chromecast/
CodePen http://codepen.io
DASH https://www.kickstarter.com/projects/hellobragi/the-dash-wireless-smart-in-ear-headphones
Day One http://dayoneapp.com
DeMobo http://www.demobo.com/product.html
Dial2Do http://www.dial2do.com/
EtcML http://www.etcml.com
Fluid http://fluidapp.com/
Google Cast https://developers.google.com/cast/
HipChat https://www.hipchat.com/
Ideascale https://ideascale.com/
Ideascale for UM http://cesandbox.ideascale.com/
KitKat http://www.android.com/kitkat/
MOPHIE http://www.mophie.com/shop/space-pack-iphone-5s
Netlytic https://netlytic.org/
Paper (53) http://www.fiftythree.com/paper
Paper (Facebook) https://www.facebook.com/paper
Paperpile https://paperpile.com
Powerof5 http://lsapowerof5.tumblr.com/
Powerof5 https://tagboard.com/powerof5
Slack https://slack.com/
UM Staff Stories http://hr.umich.edu/staffstories/category/stories/
Touch Room http://touchroomapp.com
TV Tag (GetGlue) http://tvtag.com/
VSCOCAM https://vsco.co/vscocam

Global Metrics for Access & Use of Social Media & Technologies


Global Digital Statistics 2014: Social, Digital & Mobile Around The World (January 2014) http://www.slideshare.net/wearesocialsg/social-digital-mobile-around-the-world-january-2014

Consider this slide deck from We Are Social a reference resource. I know many of the departments recruit students from other parts of the world. This is a great resource to give both a high level overview of how people around the world tend to use various types of technologies, as well as a comparison metrics at the level of individual countries, so you can plan appropriate and respectful strategies for approaching a specific community. Some folk also use this to plan for travel, so they have an idea what resources will be easy to access in a given location.

They also do a lovely job of providing their sources, which are worth repeating here.

* China Internet Network Information Center (CNNIC): http://www1.cnnic.cn/ 32nd Statistical Report on Internet Development: http://www1.cnnic.cn/AU/MediaC/rdxw/hotnews/201307/t20130722_40723.htm
* Facebook: http://www.facebook.com/ Newsroom: http://newsroom.fb.com/ Key Facts: http://newsroom.fb.com/Key-Facts
* International Telecommunication Union (ITU): http://www.itu.int/ Statistics http://www.itu.int/en/ITU-D/Statistics/Pages/stat/default.aspx
* Internet World Stats: http://www.internetworldstats.com/
* TenCent (China): http://www.tencent.com/en-us/index.shtml
* US CIA: World Factbook: https://www.cia.gov/library/publications/the-world-factbook/ Internet Users: https://www.cia.gov/library/publications/the-world-factbook/rankorder/2153rank.html
* US Census: http://www.census.gov/
* VKontakte (Russia): http://vk.com/club200

On the other hand, sometimes, while searching for links for these, I found other resources that are at least as useful, if not more so. Then I would also stumble on special tools, apps and infographics! Enjoy!

MORE INTERNET STATISTICS

Internet Census 2012: http://internetcensus2012.bitbucket.org/paper.html

Internet Security Census 2013: http://www.fortinet.com/resource_center/survey/internet-security-census-2013-global-survey.html

OpenNet Initiative (Internet Censorship): https://opennet.net/

Social Bakers: Facebook Statistics: http://www.socialbakers.com/facebook-statistics/

W3Techs (Web Technology Surveys): http://w3techs.com/ Technologies: http://w3techs.com/technologies/ Languages Used: http://w3techs.com/technologies/overview/content_language/all

Wikipedia: Global Internet Usage: http://en.wikipedia.org/wiki/Global_Internet_usage
NOTE: This one has great graphs.

World Map of Social Networks: http://vincos.it/world-map-of-social-networks/

EXTRAS

US Census Mobile App (dwellr): http://www.census.gov/mobile/

US Census: Data Visualization of the Week: Total Population and Population Missing Due to HIV/AIDS Epidemics: 2012; Selected Countries in Sub-Saharan Africa http://www.census.gov/dataviz/visualizations/062/?intcmp=sldr7

US Census: Infographics Highlight the History and Measurement of Poverty: http://www.census.gov/newsroom/releases/archives/poverty/cb14-tps02.html

Worldometers: http://www.worldometers.info/

#HCLDR Chat: What’s Emerging Tech Got To Do With Us?

Gear: Emerging Technologies

From social media to wearable technologies, from bioprinting to the quantified self movement, emerging technologies have the potential to change lives and clinical practice. At the same time, change isn’t always welcomed, and it is often difficult to determine which proposed changes bear the most value and the least risk. Even for those high value innovations, there have always been challenges with disseminating new ideas, testing and validating them, and promoting adoption of validated innovations.

These are some of the issues that have driven and continue to drive both the evolution of translational science and newer research methodologies such as systematic reviews and comparative effectiveness reviews.

Medical librarians have been intimately involved in aspects of evidence-based clinical practice, and the systematic review and comparative effectiveness review methodologies. They are also deeply engaged in providing information, expertise, and support to clinicians, patients, and administrators. They also support dissemination of innovation throughout an enterprise by acting as conduits, cheerleaders, or gatekeepers for new information, policies, and technologies.. But could they be doing more to help support proactive strategic decisionmaking with respect to emerging technologies?

The Deloitte 2013 Survey of Physicians showed significant lags with physician adoption of health information technologies. Another 2013 report, this one from Kaiser Permanente, begins with this:

“Electronic health records (EHRs) have been available for decades, and yet hospitals, doctors, and other caregivers have been slow to adopt them. This is true even though 74% of U.S. physician EHR adopters in 2011 said that using their systems enhanced overall patient care, and 85% reported being somewhat or very satisfied with their systems (Jamoom, Beatty, Bercovitz, Woodwell, Palso, & Rechtsteiner, 2012).”

With concerns about lags in adoption for proven technologies such as EHR which have been shown to have value for decades, how will the practice of healthcare accommodate the ever increasing pace of innovation in health IT? How will emerging technologies be identified and integrated into practice? Increasingly, patients are taking the initiative for solving personal healthcare challenges with areas such as the quantified self movement, the maker movement, personal genomics, and personalized medicine.

The Medical Library Association has initiated a large systematic review project to assess the level of evidence available to support the profession and practice of medical librarianship in several very important questions. Team #6 has been assigned to explore this topic: “The explosion of information, expanding of technology (especially mobile technology), and complexity of healthcare environment present medical librarians and medical libraries opportunities and challenges. To live up with the opportunities and challenges, what kinds of skill sets or information structure do medical librarians or medical libraries are required to have or acquire so as to be strong partners or contributors of continuing effectiveness to the changing environment?”

We would deeply value the thoughts and insights of healthcare professionals and leaders in helping to define these questions.

T1: What emerging technologies do you find most important and relevant in healthcare?

T2: What are appropriate roles for medical libraries and librarians with respect to emerging technologies?

T3: What issues concern you most about adoption of emerging technologies? What barriers to adoption are you aware of, or solutions for overcoming barriers to adoption?

Here is our current draft of emerging technologies that have been identified as being of interest.

Mindmeister: MLA Emerging Technologies: http://www.mindmeister.com/275111357/mla-emerging-technologies

Please join us for the weekly #HCLDR chat on Tuesday September 3, 2013 at 8:30pm Eastern Time (North America). Hosted by: Patricia Anderson. Moderator: Lisa Fields

ADDITIONAL READING

American Hospital Association. Adopting Technological Innovation in Hospitals: Who Pays and Who Benefits? (2006) http://www.aha.org/content/00-10/061031-adoptinghit.pdf

Anderson P. Maker Movement Meets Healthcare (2013) http://etechlib.wordpress.com/2013/08/12/maker-movement-meets-healthcare/

Cain M, Mittman R. Diffusion of Innovation in Healthcare. (2002) http://www.chcf.org/~/media/MEDIA%20LIBRARY%20Files/PDF/D/PDF%20DiffusionofInnovation.pdf

Coye MJ, Aubry WM, Yu W. The “Tipping Point” and Health Care Innovations: Advancing the Adoption of Beneficial Technologies (2003) http://www.nihcm.org/pdf/Coye.pdf

McCann, Erin. Docs still lag with health IT adoption, Deloitte study sheds light on health IT to-do list (May 2013). http://www.healthcareitnews.com/news/docs-still-lag-health-it-adoption

Physician adoption of health information technology: Implications for medical practice leaders and business partners (2013) http://www.deloitte.com/assets/Dcom-UnitedStates/Local%20Assets/Documents/Health%20Care%20Provider/us_dchs_2013PhysicianSurveyHIT_051313%20(2).pdf

Plsek P. Complexity and the Adoption of Innovation in Health Care. (2003) http://www.nihcm.org/pdf/Plsek.pdf

Porter, Molly. Adoption of Electronic Health Records in the United States (February 2013). http://xnet.kp.org/kpinternational/docs/Adoption%20of%20Electronic%20Health%20Records%20in%20the%20United%20States.pdf

Will It Work Here? A Decisionmaker’s Guide to Adopting Innovations. (AHRQ Publication No. 08-0051 (2008) http://www.innovations.ahrq.gov/guide/InnovationAdoptionGuide.pdf


First posted at: HCLDR: SEPT 3 CHAT – WHAT’S EMERGING TECH GOT TO DO WITH US? http://hcldr.wordpress.com/2013/09/01/sept-3-emerging-tech/

#CoolToys: Lifestreaming

Today’s Cool Toys Conversations group met to learn more about lifestreaming (not livestreaming, as some attendees thought). Britain Woodman was our fearless leader for the day, and folk were encouraged to also look at how Shawn Sieg lives the lifestreaming life. Here are a few highlights from the meeting.

What’s Lifestreaming?

“A lifestream is a time-ordered stream of documents that functions as a diary of your electronic life; every document you create and every document other people send you is stored in your lifestream.”
The Yale Lifestreams Project Page, Circa 1996: http://cs-www.cs.yale.edu/homes/freeman/lifestreams.html

Why Lifestream?

Other reasons discussed included adding value for others, transparency, making yourself and your personal brand more discoverable, ease of discovery for others as well as for yourself, as an external memory aid, simplifying your content production, searchability, safety (crime prevention), and more. One motivator for some is to connect various information streams to discover new insights, especially in the context of quantified-self and self-tracking for health. MakeUseOf posted about incentives that drive lifestreaming. There was an interesting conversation around Robert Scoble’s post on this back in 2009, but evidently the original post has disappeared or moved with the loss of Posterous.

The new billion-dollar opportunity: real-time-web curation. (Read the comments on this). http://friendfeed.com/scobleizer/db61f306/new-billion-dollar-opportunity-real-time-web

What is StoryTlr?

StoryTlr

Storytlr is a very useful tool for aggregating and (partially) archiving your own content from various cloud-based services and social media streams into a personal space on your own server. It primarily archives the text in an SQL database format, with thumbnails for images, and links to the full images and videos. It does not archive the full images or videos. It also facilitates creating stories from your various media around a particular event or day. Storytlr is open source, with the source code on GitHub.

“You can import from 18 popular sources, easily post your own updates, pick from a range of styles and create compelling stories from your content.”

What if I don’t have my own server?

More Info About Lifestreaming & Lifelogging

Lifeloggers from Memoto on Vimeo.

Lifestream Blog: Lifelogging: Resources: http://lifestreamblog.com/lifelogging/

THEN

Lifelogging, An Inevitability (2007): http://www.kk.org/thetechnium/archives/2007/02/lifelogging_an.php

Karapanos, Evangelos, PhD. Blog http://www.ekarapanos.com/blog.html
[NOTE: Fascinating entries such as "Supporting Diary Studies with Lifelogging" and "Lifelogging tools for patients suffering episodic memory impairment."]

Krynsky, Mark. Understanding the Value of Lifestreaming (2009): http://lifestreamblog.com/understanding-the-value-of-lifestreaming/

Stanford Students Design for Lifelogging (2011): http://quantifiedself.com/2011/03/stanford-students-design-for-lifelogging/

NOW

How Lifelogging is Transforming the Way We Remember, Track Our Lives (2013) http://www.wired.com/insights/2013/06/how-lifelogging-is-transforming-the-way-we-remember-track-our-lives/

I always feel like somebody’s watching me: The effect of wearable cameras (2013): http://connect.dpreview.com/post/8900204429/wearable-camera-affect

‘Life logging’ app Saga lets you share every single moment of your life (2013): http://venturebeat.com/2013/07/30/life-logging-app-saga-lets-you-share-every-single-moment-of-your-life/

Logging our lives with wearable tech (2013): http://www.deccanherald.com/content/339162/logging-our-lives-wearable-tech.html

Using a Smartphone’s Eyes and Ears to Log Your Every Move | MIT Technology Review (2013) http://www.technologyreview.com/news/516566/using-a-smartphones-eyes-and-ears-to-log-your-every-move/

Archiving the History of Our Profession: MeSH 50th Anniversary

Medical Library

Many of you know that part of the reason for the decline in my online presence is that I’ve been hard at work for several months now on a few book chapters, the most recent pair about searching for information to support evidence-based practice in dentistry. The one I’ve trying so hard to finish right now is on searching PubMed. As part of this, I am trying to give a little bit of background on where PubMed comes from as part of trying to explain why certain features work the way they do now, sort of how evolution and early constraints shapes the later versions of the tool. For this, even though I rarely spend more than a sentence or two on any specific piece of history, I am searching for articles and content to validate dates of when I think things happened, and similar sorts of proof to support what I’m saying. God forbid I cite the evidence, eh? (Yes, that’s sarcasm, or irony, or something along those lines.

At one point last week I was searching for information about the origins of MeSH, and was delighted to discover a link on the MeSH homepage for their online exhibit about the 50th anniversary celebrations for MeSH.

MeSH 50th Anniversary

Unfortunately, it was a dead link, which surprised me. When did the history of MeSH and the 50th anniversary celebration become “grey literature”, or rather simply lost? Well, last week. I sent a quick email off to Customer Service at NLM on July 31st, and received a reply the following day. To my complete surprise, the reply stated that the link was to old content that had been deleted from the site, and the link to the content should have also been deleted. “The link was meant to be removed but we have the contents as pdf files.” True to their words, they promptly deleted the link from the page.

MeSH 50th Anniversary

I asked why, and was told it is part of their policy to keep web content fresh and lively, as is true of so many other organizations.

web content policy (currency OR current OR lively OR fresh or “up to date”)
Web content policies

Alright, yes, that is a good idea in general, and it is official policy, and there are good reasons for it, but … but … but … how on earth is someone supposed to know that such content ever existed, or that it was preserved as PDFs? How would someone discover that it existed to even ask for a copy? Don’t we want copies of information of interest about the history and origins and evolution of our profession? MeSH is so inextricably intertwined with medical librarianship that it seems to me essential to preserve not only this information but also ready access to it, DISCOVERABLE access.

I understand that the persons involved are simply doing their job the best they can and as they have been instructed to do it. I am not blaming them (which is why I am not giving any names). I see this as a symptom of a broader problem at a higher level. Policies of that sort are usually developed by and for the workflows of “webmasters, IT staff, and those program officials responsible for web content.” Personally, I find it shocking, perhaps even distressing, that a library, especially a library the caliber of the National Library of Medicine would choose to honor a well-intended policy that diminishes access to useful public information rather attempt to inform policy makers of the impact and to try to inject some insight and perspective into the policy reformation process. But that is my perspective, and possibly only mine.

The official guidelines from the National Archives and Records Administration (NARA) do include policies that allow for the retention of information as well as for the disposal of information, or, as they put it, “records that have been destroyed.” Those NARA guidelines focus on trust, risk, mitigating risk, and responsibility. The guidelines include answers to such questions as “Does managing agency web sites as Federal records mean that I must keep all page changes for a long time?” That was a particularly interesting answer, also.

Q: Does managing agency web sites as Federal records mean that I must keep all page changes for a long time?
A: No. As MANAGING WEB RECORDS and SCHEDULING WEB RECORDS discuss in greater detail, your agency business needs, including the risks to the agency programs and mission should the information not be available, are the major factors in determining how long you need to keep those pages. Your web site schedule specifies the length of time you need to keep pages.

There are some very useful thoughts and considerations in these documents, even though they were drafted in January 2005 and have not been thoroughly updated since them. [ASIDE: There was an addendum issued in 2010 on "recent web technologies" including blogs and wikis, which expires October 31, 2013, so hopefully we'll soon see something more in keeping with the current state of web technologies and trends.] The part that most interested me right now was how they archive content (they recommend “spiders” and “web snapshots”), and how they determine what content should be archived.

NARA Guidance on Scheduling Web Records: How are retention periods for web site-related records determined? http://www.archives.gov/records-mgmt/policy/managing-web-records-scheduling.html#retention

“[T]he agency needs to assess how long the information will be needed to satisfy business needs and mitigate risk, taking into account Government accountability and the protection of legal rights. If specific web content is available in places other than the web, consider whether the existence of the information in other records affects the retention needs for the web records. In the case of information unique to the web site, the web version is the only recordkeeping copy.” NARA Guidance on Scheduling Web Records.

Note especially, “the case of information unique to the web site.” The question becomes how valuable and relevant that information is over time, how worth preservation. There is other information about the history of MeSH. There is the valuable but brief introduction from NLM, duplicated in the MeSH Preface, and a 2006 variant of the same text.

NLM: History of MeSH: http://www.nlm.nih.gov/mesh/intro_hist.html

As part of the 50th anniversary celebration, there is an online copy of the first volume of MeSH, which I discovered only through a brief blogpost from the NNLM Southeastern/Atlantic Region.

Regarding web-searchable content of the actual 50th celebration itself, we are primarily reduced to the video from the presentation (lacking the transcript, and not located in YouTube for sharing or embedding); an announcement in the NLM Technical Bulletin; and myriad blogposts referencing the now defunct website.

Robert Braude. MeSH at 50 – 50th Anniversary of Medical Subject Headings (The impact of the Medical Subject Headings (MeSH) vocabulary on access to biomedical information.) http://videocast.nih.gov/Summary.asp?File=16292

50th Anniversary Medical Subject Headings (MeSH®) Event. November 02, 2010 [posted]. NLM Technical Bulletin 2010 NOVEMBER–DECEMBER No. 377.
http://www.nlm.nih.gov/pubs/techbull/nd10/nd10_mesh_50th_anniv.html

I did search in Google for the actual title of Dr. Braude’s presentation (“MeSH at 50 or Should It Now Join AARP”), and found one hit, from a chemical industry page evidently created by scraping the web through a spider and still online.

Screen Shot 2013-08-04 at 1.52.30 PM

Oh. Dear. He did such a splendid presentation, and now we can’t even find out that he had done it.

“As with other agency records, most web records do not warrant permanent retention and should be scheduled for disposal in accordance with the guidance provided above. In instances where NARA determines that a site or portions of a site has long-term historical value, NARA will work with the creating agency to develop procedures to preserve the records and provide for their transfer to the National Archives.” NARA Guidance on Scheduling Web Records.

Was the MeSH 50th Anniversary content archived with NARA? I don’t know. I don’t know how to find out. I did have an idea for how to find what was missing. If I can’t find the government’s information from the actual government, if I can’t trust the government to keep available the information I need or want from them, I look in the Internet Archive. The Archive is not a government organization. They are “a 501(c)(3) non-profit that was founded to build an Internet library.” What happens when the Archive runs out of money, I don’t know. I will say the idea scares me.

Meanwhile, I was able to find an archived copy of the main page before the link was deleted.

Archive.org: NLM: MeSH: http://web.archive.org/web/20130727172025/http://www.nlm.nih.gov/mesh/

Why couldn’t I find this in Google? Because the Archive is part of what is known as the Internet’s “Deep Web.” The Deep Web is, according to Wikipedia, “The Deep Web (also called the Deepnet, the Invisible Web, the Darknet, the Undernet or the hidden Web) is World Wide Web content that is not part of the Surface Web, which is indexed by standard search engines.” Most websites that require you to perform a search to get to their content would be considered part of the Deep Web, especially if the search results do not generate a persistent URL. If the results do generate a permanent URL, then it is possible (although challenging) to create a resource that maps those links to the deep content of the site in a space which is searchable by Google.

That’s what I’m going to do now, for the web pages for the MeSH 50th anniversary. I’m doing this because I want to be able to find it again, more easily than it was for me this time. I’m doing this because Robert Braude said important things about MeSH and how it got here, because he gave faces and lively personalities to the people behind this famously dull and detailed masterwork, because he (and the rest of the 50th celebration site) gave a context that I have never seen anywhere else. Here are just a few of my favorite quotes from Braude’s presentation.


“When I received the invitation to speak today on the history of MeSH, I was truly shocked. I wondered how the History of Medicine Division dredged up my name but then I realized — I was NOW history.”

* * *

“Rather I choose to focus on the antecedents of MeSH, the fertile soil prepared by so many from which MeSH grew. These antecedents, shrouded in the dim mist of history, are, I think, of more interest. Revealing them, I believe, will give us a stronger sense of how far back the chain of MeSH development goes.”

* * *

(Quoting Janet Doe) “It is, moreover, economically unsound for all of our individual libraries to be trying to do for themselves what can only be adequately done by experts drudging away tirelessly for years on a fully representative collection of material.”

* * *

“Why MeSH; what were the forces shaping the effort to create such a resource?”

* * *

“Stan Jablonski, esteemed author of the Illustrated dictionary of eponymic syndromes and diseases and their synonyms and the Dictionary of medical acronyms & abbreviations was there, towering above us all physically as well as intellectually. Coffee breaks with Stan were a treat and an education. And I will never forget having to turn in my used pencils at the end of the day to Gus Gillespie since funds were just as tight then as they are now.”

* * *

“One of the problems with the constant changes to MeSH was searching backwards in time, for one needed to know what heading had been previously used.”

* * *

“The issue raised by Claudius Mayer was that there was no way a single authority list for cataloging monographs and indexing the periodical literature could be developed. Wrong Claudius, Dr. Rogers did it with MeSH.”


Here are the links to the Archive’s copy of the MeSH 50th Anniersary pages that have been lost to Google search.

Celebrating MeSH: 50 years of Medical Subject Headings
http://web.archive.org/web/20120715011340/http://www.nlm.nih.gov/mesh/mesh_at_50/mesh_at_50.html

50 Years of Medical Subject Headings:
Past, Present, and Future Impact on Biomedical Information
Robert M. Braude, MLS, PhD, AHIP, FMLA, FACMI
Thursday, November 18, 2010
http://web.archive.org/web/20120727164057/http://www.nlm.nih.gov/mesh/mesh_at_50/presentation.html

Faces of MeSH:
http://web.archive.org/web/20120727205432/https://www.nlm.nih.gov/mesh/mesh_at_50/faces_of_mesh.html

Milestones in MeSH:
http://web.archive.org/web/20120727164124/http://www.nlm.nih.gov/mesh/mesh_at_50/timeline.html

History of MeSH:
http://web.archive.org/web/20120727164125/http://www.nlm.nih.gov/mesh/mesh_at_50/history_of_mesh.html

Publications about MeSH
http://web.archive.org/web/20120727164126/http://www.nlm.nih.gov/mesh/mesh_at_50/publications_about_mesh.html

Hashtags for Twitter Cancer Communities

Top ten hashtags associated with #cancer

Librarians have been geeking out, or grossing out, over hashtags since they first appeared. Some of the conversation has been about concerns over ‘allowing’ the public to define their own metadata, while much of it has been the flip side of trying to engage the public in generating metadata for library online collections, and thus enriching access and awareness for those collections.

Naturally, the general public simply move forward with creating new hashtags for their own purposes, largely unaware of the conversations and concerns of professionals in the area of metadata. This is as it should be. The idea of a Folksonomy, a.k.a. folk taxonomy, as originated by Thomas Vanderwal centers around the social aspect — real people, real folk, coming up with language that means something to them to describe content that matters to them with ideas that matter to them. Meaning.

I could go on about this for a long time, but today I need to focus on a particular aspect of this dynamic — a shift from folk+taxonomy to folk+ontology. Folkology? Folk ontology? Folktology? A little bit of digging leads me to folktology (non-scholarly) or tagontology (scholarly) as preferred terms for this, both of which are used roughly the same amount.

In social media, one of the greatest strengths has been the power to create community where none existed before, to connect and empower those who may otherwise be isolated. The most prominent examples of this in healthcare have been the emerging communities around chronic conditions (such as diabetes), marginalized communities (such as facial difference and transgendered), and conditions that create isolation as part of the lifestyle or treatment of the condition (such as mobility disorders, many types of cancer, and any condition expected to be fatal).

Taking cancers as an example, there is the immediate problem of the ambiguity of language. In the image at the head of this post, the hashtag #cancer is shown to be most often associated with the Zodiac, not with healthcare. This makes that term itself less useful for healthcare uses.

Symplur Healthcare Hashtag Project 07082013
Symplur: The Healthcare Hashtag Project: http://www.symplur.com/healthcare-hashtags/

In the Symplur Healthcare Hashtag Project, a crowdsourced collection of hashtags in health, there are over 2500 hashtags total, with over 100 (n=133 07/08/2013) related to cancer. These range from disease tags, to events, to scheduled chats, and more. When people enter a new tag, they cannot do so anonymously, and the tags are reviewed before being added to the database. The tag donor is also asked to define the tag category at time of submission. Non-event tags must be able to show that they are used by multiple people. All of this makes the quality of the collection superior to most hashtag databases on the web. (I often wish there was something similar for science hashtags, or information technology hashtags, etc. I also often wish that the project content was routinely archived for posterity through a neutral organization, such as a library, but that is another conversation to have.)

The problem? Not one of those 133 hashtags on cancer is the hashtag #cancer. Of course, it would be really messy to try to separate the zodiac hashtags from the health hashtags, so I can understand why it has been avoided. However, this problem of the commonly used hashtag being missing from the database occurs fairly regularly. It is a not unexpected problem with crowdsourced information collections. Here’s another example. According to Symplur, the preferred hashtag for ovarian cancer is #ovariancancer. If you actually prowl around Twitter, there is an enormous variety of tags used, with the most common being #ovca. The #ovca content is not currently being captured, tracked, or archived in the project database. I just this morning submitted the #ovca tag when I noticed it was lacking. Hopefully, it may be active by the time this post goes live, but the content in it would be sparse and would lack history.

Here are the top, ie. most common, cancer hashtags, according to Symplur.

Cancer:
#BCSM; #BladderCancer; #BowelCancer; #BrainCancer; #BreastCancer; #CancerChat; #CancerFreeMe; #CancerSurvivors; #CervicalCancer; #Chemo; #ChildhoodCancer; #ColonCancer; #Leukemia; #LiverCancer; #LungCancer; #Lyphoma; #Melanoma; #Mesothelioma; #OralCancer; #OvarianCancer; #PancreaticCancer; #PediatricCancer; #ProstateCancer; #SkinCancer; #TesticularCancer; #XMRV
Symplur: The Healthcare Hashtag Project: http://www.symplur.com/healthcare-hashtags/diseases/

You’ll notice a wide variety of types of tags, with a general approach tending toward long tags that include the full words. In actual practice on Twitter, this is the reverse of standard practice, in which tags are kept short to minimize the number of characters used. Many of these tags, like #OvarianCancer, have shorter alternatives that are also used heavily (ie. #ovca). For breast cancer, both forms appear in the Symplur list: #BreastCancer and #BCSM. #BrCa, however, was missing, just like #OvCa. I submitted it, also.

You see the problem? Problems, actually. Part of it is discovery of the terms used, part of it is the actual terms used, and part of it is the community working to ‘manage’ creation, use, and adoption of the terms. Enter @SubatomicDoc, a.k.a. Dr. Matthew Katz. Matthew is a radiation oncologist who has been active in a couple different Twitter cancer communities, most notably #BCSM (which he adopted) and #LCSM (which he initiated). #BCSM stands for breast cancer social media, and #LCSM stands for lung cancer social media. The process of coming up with a better hashtag for lung cancer, gathering a community around it, and developing traction and adoption, got him thinking. What about other cancers?

Matthew sent me a direct message last week about this. He’d been thinking, and had created a rough draft of what he is calling a folksonomy, but which is really more of an ontology, uh, folktology or tag-ontology. We went back and forth several times, thinking about metadata design, automated sorting in computers, common usage, structuring subconcepts, distinguishing proposed tags from currently used tags in other domains, and various other ideas of how to best structure these in a way that would be useful, practical, and true to the concepts and communities. Matthew released the initial draft at the ASCO site last week, with a substantial model integrating proposed and existing Twitter hashtags around cancer experiences and communities.

Matthew S. Katz, MD. Hashtag Folksonomy for Cancer Communities on Twitter. ASCO Connection: 03 Jul 2013 9:08 AM http://connection.asco.org/Commentary/Article/ID/3590/Hashtag-Folksonomy-for-Cancer-Communities-on-Twitter.aspx

Since then there has been a lot of reaction, with people asking for MORE. Frankly, that is not a reaction I think either of us expected. There are refinements and extensions evolving from the communities. It is becoming a richer and broader conversation. I’d like to see more medical librarians engage with this. I am no metadata specialist, and would love to see someone get interested who is more expert than I am with metadata.

One of the extensions that was proposed through Twitter conversations around this is the idea of secondary tags to connect common cancer issues with specific cancer communities. I’d roughed out a list of some of those issues for my book chapter for online cancer resources and search strategies, back in the MLA Guide.

CAM, biopsy, staging, caregiving, home care, chemotherapy, cancer medications, side effects, clinical trials, fatigue, new diagnosis, nutrition, diet, pain, prevention, lifestyle, second opinions, sexuality, survival, and talking about cancer to different audiences.
MLA Guide: Free Samples: Sample Chapters: Volume Two: Diseases and Disorders: Part IV: Cancers, by P. F. Anderson http://www-personal.umich.edu/~pfa/mlaguide/free/cancers.html#issues

One of the ideas Matthew is talking about is how to come up with a strategy for creating new hashtags that would open this up to others, what are the criteria or best practices for creating new hashtags. I did some thinking on this for my Enriching Scholarship workshop on Twitter Hashtags for Science.

Twitter Hashtags

Twitter hashtags mindmap: http://www.mindmeister.com/270101756/twitter-hashtags-by-pf-anderson

I should make a separate post about the model I developed for thinking through best practices of creating new hashtags, but I’ll just put a placeholder here. The acronym is LUDDITE, which stands for:

Length
Unique
Distinct
Decipherable
Indelible
Time
Enterprise

LUDDITE Model for Hashtag Creation

These overlap in many key points with Matthew’s criteria in his ASCO post, however he includes critical points of working specifically for cancer and healthcare communities.

“It is disease-based;
It helps patients with similar diagnoses learn and share rather than be isolated by the cancer experience;
It is designed to make information more easily accessible;
It is unique enough to be distinguished from other topics online;
Brevity is key to allow more content/conversation, especially with Twitter.”

So, that’s as far as we’ve gotten, but we’d love YOU to join the conversation and thoughts around this. Please put comments about the hashtag model at Matthew’s post, and comments about the process here. Thank you so much!


UPDATE July 15, 2013.

An important followup post from Matthew (@subatomicdoc) is now up.

Cancer Hashtags: High Time or Half-Baked?
Matthew S. Katz, MD
15 Jul 2013 10:09 AM http://connection.asco.org/Commentary/Article/ID/3599/Cancer-Hashtags-High-Time-or-Half-Baked.aspx