Archive for For Medical Libraryfolk
CHLA-ABSC 2009
Thanks so much to Laurie Blanchard and everybody at CHLA for inviting me to speak! I enjoyed Winnipeg and it was a treat to finally meet people like Francesca Frati (who is awesome) and Mark Rabnett.
The slides for my talk (which look awful in Slideshare) are embedded below.
To clarify for Krista Clement:
I think anything that removes obstacles between users and the information they want is good. If more fully automating some functions of the library makes those functions less visible, I think that’s great. I don’t think that doing a better job for users will result in decreased funding, but I do think that better automation will cut costs.
☣Sneeze: Flash Flu Fun
How timely that a friend sent me the link to this game just when I needed a fun break from Swine Flu panic.
In Sneeze, you are an influenza virus in one human and have the opportunity the spread yourself in various environments by having your human sneeze just once on each level.
Q&A With Melissa Rethlefsen
MIDLINE, the Newsletter of the Midwest Chapter of the Medical Library Association has a Q&A with my friend and kick-butt medical librarian Melissa Rethlefsen.
Watching Swine Flu on the Web
Holy cow! Holy pig!
Watching misinformation spread is sort of entertaining. Check out all the people who talk about not eating pork on Twitter. (The flu is not spread by eating pork.)
Hah! As I was writing this post, the latest xkcd appeared!
The CDC’s Emergency Preparedness and Response Twitter feed seems to be a frequently-updated source of sanity:
RSS Feed for CDC’s Swine Flu site
Maps
Google Map 1 (H1N1 Swine Flu)
Google Map 2 (”Swine Flu 2009″)
Google Map 3 (”HPAI H5N1 30-Day Outbreak Map”)
HealthMap (previously mentioned here) might be the most complete map visualization. HealthMap’s twitter feed is also interesting, but gives a more panicked impression than that of the CDC (see above)
*Really* Stupid Social Health Site
The idea behind rateadrug.com is for users to rate drugs.
Our goal is to provide unique user-generated data on side effects and subtle side effects of medications. We want to know how these prescription drugs make you feel.
I’ve seen stupid applications of social media in healthcare, but this may take the cake as the dumbest I’ve seen in a good while.
Screencast: Introduction to new PubMed Advanced Search
Way behind on sharing this, but better late than never.
The Mayo Clinic Libraries’ Liblog has a screencast by Melissa Rethlefsen on PubMed’s new Advanced Search features that you can embed on your own page:
In case I have not mentioned it recently: Melissa is awesome.
Pubget RSS and Firefox Download Extension
Okay, so we already knew that Pubget is pretty neat and, for the organizations who can implement it, it speeds up the process of getting the full text PDF to the user.
Pubget’s head developer, Ian Connor, keeps me updated on new developments. I was delighted to hear that Pubget now offers RSS feeds with links to the full-text PDFs via one’s organization’s access. The example in the embedded video below uses an open access journal, but gives a good idea what the new feature looks like.
So the idea is that if you click on the link in the RSS feed, Pubget scrolls down the list of the results, highlights the right paper, and displays that PDF.
Pubget also has a new Firefox extension (available at http://pubget.com/pubget.xpi) for registered users at that will allow them “…to download all papers from a search or latest issue to their local hard drive.” See embedded video below.
If your organization uses Pubget, how about writing a review for the JMLA? Everything I see and hear from Ian looks insanely cool, but I’d love to hear what a medical librarian thinks after a road test.
Screencast: Evernote as a Medical Student’s Peripheral Brain
In this video, 4th-year medical student Ryan MacDonald demonstrates how he uses Evernote as his “medical peripheral brain.”
So cool. 
Yale Image Finder (and UC Berkeley’s BioText)
The Yale Image Finder searches PubMed Central articles for images.
That sounded not only like a good idea, but a good idea I’d heard before. In July of 2007, I posted about UC Berkeley’s BioText1, which seems to already search PubMed Central for images. Why build another tool to do the same thing?
The answer is found in this Bioinformatics article
The authors note they are aware of BioText, but that…
…we are not aware of a biomedical search engine that can retrieve images by searching the text within biomedical images. This offers several advantages over searching over captions alone. First, captions may not contain all the textual information that is contained in the images. Second, image texts are usually very specific, allowing for precise matching of images with related images.
Neat. So Yale’s tool does OCR on text appearing in images and adds that text to its searching index of images in PubMed Central. Cool.
WebPax.com
I’m not sure what to make of WebPax.com…but at first glance, it seems really cool to have a Web-based service for viewing images in DICOM format. I know at least a couple of physicians who will want to try it out right away for sharing the occasional scan with a colleague from a distance.
I *do* like that DICOM files are anonymized as they are uploaded. DICOM tags are cleared and…
• The year and month are not modified
• The day is set to the first of the month
• The time is set to midnightThe patient’s birth date is set to January 1, 1970
I’ll say this much: If I kept a digital personal health record in an online service, I’d want to be able to view DICOMs in it with this kind of tool. Google needs to buy these guys or build a comparable tool. Maybe that’s what they and IBM can work on next.
HAVIDOL (avafyneyme HCI)
Dated 2007 but new to me:
Havidol is clearly an amazing new drug. Thank goodness there’s such a wonderfully detailed site to tell us all about Havidol and how it can treat Dysphoric Social Attention Consumption Deficit Anxiety Disorder (DSACDAD).
Click to visit the site
Great parody of direct-to-consumer advertising.
HHS/FDA/CDC Social Media Tools for Consumers and Partners
New to me- and a good idea to put all of this on one page.
http://www.cdc.gov/socialmedia/
I didn’t know the CDC was on MySpace or that the FDA had a recall Twitter feed.
I decided I should definitely follow the CDC’s Twitter feed for Health Professionals, which is for “…Health Professionals interested in staying up-to-date with CDC’s interactive media activities…”
They’ve also got a widget to help consumers search for products impacted by the Peanut-Containing Product Recall (embedded below).
Includes:
- Blogs
- eMail Subscriptions
- Health-e-Cards
- Mobile Information
- Online Video
- Phone/Email
- Podcasts
- RSS Feeds
- Social Networks
- Badges for Social Networks
- Virtual Worlds
- Web Sites
- Widgets
Hat tip: Maura Sostack
More on Evaluating Health Journalism
Francesca Frati (who rules) pointed out last week a site produced by the Royal College of Physicians of Edinburgh and Royal College of Physicians and Surgeons of Glasgow: http://behindthemedicalheadlines.com/.
Craig Stoltz (previously mentioned) dropped me an email to point out a post I’d missed from The Health Care Blog by Alicia White of Bazian (the company which evaluates stories for the NHS’s Behind the Headlines service).
Says Ms. White:
…we’ve developed the following questions to help you figure out which articles you’re going to believe, and which you’re not.
Questions include:
- Does the article support its claims with scientific research?
- Is the article based on a conference abstract?
- Was the research in humans?
- How many people did the research study include?
- Did the study have a control group?
- Who paid for and conducted the study?
- Did the study actually assess what’s in the headline?
- How can I find out more?
Good stuff. Go read it.
Thanks again for the pointers, Francesca and Craig!
Online Social Networks for Nurses
(Started drafting this post on 10/12/2008)
We’re well past the point where there is an online social network for every community. We’re at the point where there are an absurd number of online social networks for every community.
A selection of online social networks for nurses:
Nurse Connect (previously mentioned here):
NurseConnect is an online nursing community and networking site for nurses and other healthcare professionals interested in advancing their education, careers and personal lives by sharing experiences and knowledge with others. NurseConnect is owned and operated by AMN Healthcare, Inc.
NurseLinkUp (previously mentioned here), is one of many sites run by Online LinkUp.
ANA Nursespace (previously mentioned here) doesn’t seem to be doing much at all.
I asked Arlton Lowry, the director of SocialRN, to make a case for what sets his site apart from the other online social networks for nurses.
Many of the other nursing social networking sites that are operating are built with one key objective in mind – profit. When sites are designed solely for the acquisition of profit, the design of the site and features suffer. We built socialRN for the nursing community and we have no other objective in mind.
The site offers many of the features that the other nursing social networks offer – like, photo sharing, blogs, status updates, file sharing, groups, ext. But what sets socialRN aside is how it integrates other Web 2.0 applications within the users profile. A user can display their flickr photos, what music they have last listed to – through last.fm, their position with Google Maps, and even their Twitter update. It allows users to bring all the other Web 2.0 services they are using together into one location.
Also, the design of a site is crucial for a pleasant user experience. There is no clutter within socialRN. We have developed the site so that it is easy for a user to navigate content and socialize with other users.
It’s worth noting that the site is built on Open Source software that will is upgradable and expandable in the future. It will allow us to add additional features and grow the site as more users are added.
The Open Source software socialRN uses is elgg, also used by Nurse’s Cafe
In the category of Online Social Networks with Very Unfortunate Names, we have TNA LinkUp.
Liz: Whatcha’ looking at?
David: A site called “TNA LinkUp”
Liz: …You’re looking at porn?!
See? Unfortunate name. ‘Nuff said.
I was interested to find there’s a social network just for travelers, HealthCare Gypsy.
Nurses Lounge interests me because it is made up of lounges that are specific to metro area or nursing specialty.
CampusRN2RN is for nursing students.
I know I’ve missed some- please let me know?
Sites that Critique Health Journalism
(Example of how backed-up I am: WordPress says I started drafting this post on 9/18/08)
I was skeptical when I first heard about Health News Review…but learning that Craig Stoltz was involved with the project1 made me give it a close look.
HealthNewsReview.org is published by Gary Schwitzer of the University of Minnesota’s health journalism program and funded by the Foundation for Informed Medical Decision Making.
Read a few reviews and you’ll likely find them reliable and wonderfully critical. Be sure to check how how they rate stories.
Health News Review focuses on U.S. news, so anglophones in other nations will want to note these:
For Canadian news, there’s Media Doctor Canada.
Australians have Media Doctor Australia.
The NHS Choices site has a section called Behind the Headlines which seems to serve a similar purpose for U.K. health news.
Your turn: Are there other sites like these that I missed?
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Understanding Evidence-based Healthcare
Rachel Walden points (from both Women’s Health News and Our Bodies Our Blog) to a free online workshop titled “Understanding Evidence-based Healthcare: A Foundation for Action” , offered by the US Cochrane Center’s Consumers United for Evidence-based Healthcare (CUE).
(Embedded below is a video about CUE. If you are reading this post via a feed reader, you may need to visit the site to view the video.)
Annals of Pharmacotherapy on Wikipedia
I know I’m way behind on such things, but this article from the Annals of Pharmacotherapy deserves a mention, even one this belated:
Scope, completeness, and accuracy of drug information in Wikipedia.
Ann Pharmacother. 2008 Dec;42(12):1814-21. Epub 2008 Nov 18.
[PubMed] | [html] | [PDF]
The article compares drug information in Wikipedia to drug information in the Medscape drug reference.
“This study suggests that Wikipedia may be a useful point of engagement for consumers looking for drug information, but that it should be supplementary to, rather than the sole source of, drug information. This is due, in part, to our findings that Wikipedia has a more narrow scope, is less complete, and has more errors of omission versus the comparator database.”
And I loved this:
“…health professionals should not use user-edited sites as authoritative sources in their clinical practice, nor should they recommend them to patients without knowing the limitations and providing sufficient additional information and counsel. If these sites are recommended, it should be in the form of a permanent link pointing to the specific recommended version of an entry. Finally, the issues raised in Web 2.0 are not novel, nor are the approaches; consumer education, watchful editors, alert health professionals, and ethical online behavior remain, as ever, the foundation for the safety of Internet health information.”
Additions to the list of Medical Wikis
Added to the list:
- Clinical Research Informatics Wiki
Self-description: “…devoted to topics in clinical research informatics…exists to facilitate collaborative development of articles covering the breadth of the CRI domain.”
Intended Audience/Users: Not listed.
Contributors: Anyone who registers
Editors/Administrators: Listed only by User ID.
Editorial Policies: None listed. - MIGHEALTHNET
Self-description: “This project aims to give professionals, policy makers including health authorities, researchers, educators and representatives of migrant and minority groups easy access to a dynamically evolving body of knowledge and a virtual network of expertise.”
Intended Audience/Users: “…professionals, policy makers including health authorities, researchers, educators and representatives of migrant and minority groups.”
Contributors: Anyone who registers and who is approved by administrators.
Editors/Administrators: Not listed.
Editorial Policies: Other than these copyright disclaimer notes, none listed.
Note: This is the UK Wiki of MIGHEALTHNET. Other Wikis serving a similar purpose for other nations can be found here.
Apomediation, Online Health Info and Baloney
A recent article in the Journal of Rheumatology:
“Trying to Measure the Quality of Health Information on the Internet: Is It Time to Move On?” [html] | [PDF]
Short answer:
Hell, no.
Longer answer:
Says the article:
“The natural assumption is to believe that there exists a link between the quality of information on the Internet and harm. However, a systematic review attempting to evaluate the number and characteristics of reported cases of harm in the peer-review literature determined that for a variety of reasons, there was little evidence to support this notion.”
It is impossible to quantify why people make bad decisions. For instance, say someone makes foolish financial decisions and loses everything they own: can it be determined if these bad decisions were made based on information they found online?
On the other hand, ask anyone you know who works in an Emergency Room if they’ve seen people who have done harm to themselves with a self-diagnosis or self-treatment based on something they read online. Every one of them will confirm they have. This isn’t necessarily the fault of the information found online, but knowing as we do that people increasingly make decisions about their health that are informed by information they find online, we don’t need evidence to assume, a priori and with confidence, that bad information can lead to harm. It is common sense for everyone in the health community to promote/produce good online information resources and discourage the existence/use of bad online information resources. Most importantly, we must help both health professionals and patients gain the information and health literacy skills to tell the good from the bad.
Authors Deshpande and Jadad argue that the evaluation tools for Web sites suffer…
“…from several limitations, which, in addition to those mentioned by the authors, include uncertain levels of usability, reliability, and validity.”
I won’t argue with that. I don’t think any single evaluation tool can let someone without information literacy skills determine the quality of information found online. I don’t think that even a vast arsenal of such evaluation tools will do the trick.
The authors have questions I’ll answer (I don’t care that the questions were intended to be rhetorical- they need to be answered):
“Will we ever develop an ideal tool that allows individuals to assess the quality of health information?”
Nope. We’ll also never invent a diagnostic tool that can replace a good physician’s experience and judgement- but that doesn’t mean we shouldn’t create tools that help new doctors build these skills or help more experienced doctors flesh out their differential.
What are the determinants of this quality?
That’s a pretty broad question, but the MLA has a good basic guide of where to start.
“Is it possible to assess or measure quality?”
Medical librarians assess the quality of information every single day. So…yeah, it is.
“Even if possible, is the formal assessment of quality even necessary?”
Necessity depends on who the user is and what his/her particular information needs are.
“Does it even matter?”
Kind, encouraging teachers throughout the world often say that there’s no such thing as a stupid question. These extraordinarily compassionate educators are lying. Yes, it matters.
I’m a Web enthusiast who sees a lot of value in lots of online collaborative efforts. There are absolutely places and uses for the wisdom of the crowd- but to hear some people talk about apomediation, you’d think the wisdom of the crowd could replace the judgement of experts.
“For example, Internet users could provide ratings or recommendations based on their own experiences to judge the quality and relevance of health information.”
Huh. So if we’re just gonna’ go with what a crowd of self-selecting amateurs agree upon, I guess we don’t need double blind trials any more, either? We’ll just ask a crowd their opinion. Who needs empiricism? Science, schmience. Why should we take this article more seriously because the authors have two MDs and dotorate between them? I’m not Andrew Keen1, but neither am I an irrational technotopian.
“Analogous to the peer-review process, aggregation of ratings from many individuals (a form of crowdsourcing) allows “good” information to be highlighted prominently, while “not so good” information gets pushed to the bottom.”
That’s a terrible analogy. In the peer-review process, both the author(s) and the reviewer(s) are credentialed experts in their field. I would not ask a room full of neurologists for advice on my house’s plumbing and I would not ask a room full of plumbers about the treatment of peripheral neuropathy. For the “Digg” model to work at all for health information, the crowd should be very large and very knowledgeable. On the other hand, even widely agreed-upon practices have later been proven wrong by empirical testing and evidence…so shouldn’t we rely on evidence?
The problem with relying only on the wisdom of crowds is that, sometimes, the crowd shows an alarming lack of wisdom regarding health information. Huckster snake-oil salesman Kevin Trudeau’s Natural Cures ‘They’ Don’t Want You to Know About was a New York Times self-help Best Seller! (For more on why this is a great example of an unwise crowd, see this video.)
Let me illustrate with a real life example: When our infant son developed what appeared to be a tremor, we didn’t waste time asking a crowd. We first asked a local pediatric neurologist for his opinion. When he was unable to make a diagnosis, we asked Dr. Marc Patterson, a pediatric neurologist at the Mayo Clinic. Dr. Patterson’s unusual experience and education enabled him to make a diagnosis very quickly.2
I wonder: If Drs. Deshpande and Jadad have family members with worrying illnesses, do they consult the best available clinical expert, or go to the wisdom of the crowd?
But I’m getting off-track. Back to the article.
As seems to be typical for malinformed physician technotopians, these authors point at Wikipedia to support their perspective.
“The interplay of users to collaborate and deal with information overload has already been proven successful in other areas outside the health space. For example, Wikipedia not only allows users to submit content on various topics, but also provides the capability for users to edit the content of others. Although there is the potential for misuse, Wikipedia, which relies on anonymous, unpaid volunteers, seems to be as accurate in covering scientific information as the Encyclopedia Britannica.”
Well, yeah. And I’d trust Wikipedia as a source for health information about as much as I’d trust Britannica….which is to say not very much.3
“Since its inception in 1990 until the present day, the health system has grappled with how to manage potential harm associated with information available on the Internet. Research in this area, for the most part, continues to assume that techniques used to evaluate paper-based information can automatically be applied to online resources, ignoring the added complexity created by the multiple media formats, players, and channels that are brought together by the Internet.”
Someone please explain to me why peer review is less effective with texts distributed online than texts distributed on artifacts of dead trees. Text is text. Someone please explain to me why peer review would be less effective if this text is read aloud and recorded/played online as video or audio (downloadable or streamed in any format). The “added complexity” the authors mention impacts peer review in no way. Perhaps this is why they make such an assertion while providing utterly no support for it.
I like Web technology and have made a nice niche for myself by writing and talking about how it can be useful to health information professionals. I am sick to death, however, of people attempting to make names for themselves with inane prognostication and unsupported technotopianism. When these authors write that “…as the Web continues to evolve, we will likely gain new insights as to how this happens along with a better understanding of how to handle health information from any source…”, I want to beat my head against a wall. To me, this is no different from saying we should go ahead and build lots more nuclear reactors because we have faith that technology will work out a way to dispose of nuclear waste in a safe manner before we are harmed by our inability to dispose of it properly. Such things are too important to take on faith in the future.
“The time has likely come to end our Byzantine discussions about whether and how to measure the quality of online health information. The public has moved on. It is time to join them in what promises to be an exciting voyage of human fellowship, with new discoveries and exciting ways to achieve optimal levels of health.”
Such a perspective would have us ally ourselves with the Jenny McCarthys of the world. Jenny McCarthy believes and popularizes the idea that immunizations cause autism spectrum disorders, despite the fact that there is no scientific evidence correlating immunizations and ASDs.
Laypeople, even brilliant laypeople, do not generally have the information or health literacy skills to know where to find quality information and to know what to trust. My brother is an experienced Web programmer. He has topped out every IQ test he has ever taken. He is a brilliant man and as talented an autodidact as anyone I know. Still, when he needed a medical procedure, he was able to find more information and trust its authority by conferring with me- because I spend my days finding and evaluating health information.
Reliance on science and expertise is not Byzantine. Rationalism is not Byzantine. Empiricism is not Byzantine. Politicians should not make public policy decisions based on polls and clinicians should not make decisions based on the misinformed preferences of their patients. Clinicians have a duty to educate patients and help point them towards good information because the volume of shoddy information is growing at an alarming rate.
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