(Paula Younger is Electronic Resources Librarian, Exeter Health Library, Exeter, UK.)
Abstract: Purpose – – The purpose of this paper is to examine the case for using subject (medical) wikis as a reference tool.Design/methodology/approach – The paper summarises content of ganfyd and WikiMD, comparing their ethos and approach to information. It describes some other medical and health wikis in brief.Findings – As their audience is somewhat more specialised, medical wikis, currently in their infancy, cover topics in more depth than Wikipedia but coverage remains patchy. They may be of particular use for those without access to expensive resources such as UpToDate requiring a short literature review or overview of a topic. Wikis at present are best used as a signpost to other resources with tighter editorial control.Research limitations/implications – The assessment of the subject wikis is brief and the analysis of wikis as a reference tool is largely drawn from general literature, not medical.Practical implications – This assessment provides exposure of subject wikis as a potential reference tool.Originality/value – The paper highlights the existence of subject wikis as a potential more in-depth tool than Wikipedia.
Radiopaedia (previously mentioned here) has made available (at no charge via the iPhone App Store) a Radiopaedia Radiology Teaching File of “50 CNS cases comprising 170 images, questions and detailed text.”
Neat. Still, I’d like to know how many health infomation wikis are set up to deliver a mobile version for a variety of mobile browsers.
This reminds me: I’m going to need to do an update on my list of medical wikis in the near future. If you know of any that I don’t have listed, please leave a comment or drop me an email?
“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.”
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.
My apologies to the awfully nice folks who attended the CE course I taught at UNYOC a couple of weeks ago! I’ve taken far too long to get these slides posted:
Also: I’ll be on a panel at NYLA tomorrow (Friday, 11/6/2008) afternoon at 4:00 PM- please say hello if you’re going to be there! As usual at these sorts of things, I’ll know almost nobody. But hey- I might get to meet Polly Farrington!
Medical librarian and blogger David Rothman, who regularly writes at DavidRothman.net about medical wikis, expressed concerns about the regular monitoring of Medpedia’s content. “If the academic institutions … wish to avoid embarrassment, I’d recommend that they dedicate some time of their health care experts to regular review of articles,” Rothman wrote.
He estimates about 65 medical wikis exist. He’s not sure what the involvement of prominent medical institutions will mean to the project, noting that comparisons won’t be possible until the site is up and running.
As I usually do when I’m interviewed or quoted, I thought I’d post the entirety of my comments here. Pam got my views partially from this post I wrote about Medpedia and partially from an email. Pam’s questions are bolded:
My question for you is whether or not medpedia will be the largest collaboration of its kind for a medical wiki…
That depends on what you mean by “largest” and what we learn about Medpedia when it comes out of Beta. We haven’t yet seen how many contributors/editors it has or how many articles/words it contains. We won’t know for months after it begins how active a community it has. What other metrics could be used to measure “largeness”? The names of affiliated institutions? Medpedia doesn’t really say exactly what contributions those institutions are making (aside from, apparently, allowing the use of their names and logos).
…and if it will raise the bar for those wanting to develop medical wikis in the future.
I think that remains to be seen. So far, Medpedia looks to the public like a press release and a mock-up. When it is up and running, we can begin to compare it to other efforts. Until then, such comparisons aren’t possible.
Anyone with medical and health knowledge is encouraged to apply to become a Contributor. It is not a requirement that you have medical credentials; however, it is important that you are passionate and knowledgeable about at least one topic related to medicine, health and the body.
My concern here is that clinicians should not use an information resource built by people who are not qualified health professionals. Passion is not, in my view, a sufficient qualification.
I also asked Angela if Medpedia was intended to be a resource for professionals (like UpToDate) or a resource for healthcare consumers (like MedlinePlus). Angela replied:
Initially, Medpedia will be a resource for the general public. Over time, with 1000’s of clinicians and researchers on the site, discussing what should be on the main pages, Medpedia will also become a resource for medical professionals, health educators, and medical schools.
This did not seem promising to me. I don’t believe that a single article on a topic can appropriately serve both healthcare professionals and healthcare consumers- their needs are usually quite different.
Medpedia seems to have addressed some of these concerns since that time. Their index page now only invites “Medical Professionals” to “Apply to be a Member, ” and the FAQ says:
There are multiple ways of contributing. If you are an MD or PhD in the biomedical field, you can apply to become an Editor and make changes directly to Medpedia articles (See more below). If you are anyone else, you can use the “Make a suggestion” link at the top of any page to make a suggestion for that page. An approved Editor will review and potentially add your suggestion.
Also interesting to note that Medpedia will be advertising-supported (neither Ganfyd nor AskDrWiki are ad-supported. AskDrWiki is a non-profit). Again from the FAQ:
To support the costs of operation in the future, non-invasive, text-based advertising will be shown on the Medpedia website through third-party ad networks such as Google’s AdSense or Healthline’s third party ad service. Next to these ads on the page will be a link “Flag inappropriate ads” so that the community can keep the ads on the site clean and useful.
Then there’s the question of how reliable the content will be. The FAQ says:
The seed content available on Medpedia at launch is up to date, accurate, and provided by reputable sources. After launch at the end of 2008, once Editors start making edits and adding new pages to the seed content, it is possible, and even likely that there will be mistakes and language that is unclear. This is the nature of a collaborative wiki.
If the site is meant to be used by healthcare professionals, I’d strongly recommend a routine (Monthy? Quarterly?) review of each article by an admin to make sure the content is accurate and up-to-date. To say “it can’t be kept reliable because it is a wiki” is, in my thinking, a cop-out. After all, Medpedia’s own FAQ says the site is meant to be “…a platform to share the most up-to-date medical knowledge.” If the academic institutions listed on the front page of Medpedia wish to avoid embarrassment, I’d reccommend that they dedicate some time of their healthcare experts to regular review of articles.
(Just a guess, but) I think Medpedia’s content will end up focusing mostly on the information needs of healthcare consumers. In that sense, I think it’ll resemble MayoClinic.com
Criticism aside, here are some things about Medpedia that I DO like:
Editors/contributors must be qualified health professionals
Editors/contributors cannot be anonymous
Content is freely usable under a GNU Free Documentation License
What do you think? Do you anticipate other problems I may have missed? Maybe you think I’m being too critical? Share your thoughts in the comments.
At the AMA’s Medical Communications Conference, I insisted to a communications professional from a state professional association that professional associations needed to take advantage of social Web technologies and utilize them to the benefit of their members.
When pressed to explain WHY professional associations should do this, I said that those professional associations who don’t adopt these technologies will find that their members (and potential members) will use these technologies (without assistance from their professional associations) to organize without organizationsI haven’t read this book yet, but I love the title and urge you to please send me a copy.. Where will the professional associations be left when that happens?
With that in mind, here are some projects I’d love to see the MLA pursue.
1. Stop publishing books on dead trees
As I understand it, books published by the MLA are generally written by uncompensated MLA members, edited by uncompensated MLA members, and selected for publication by a committee of uncompensated MLA members. The selling of these books does not raise much (if any) money for the MLA.
Since this book publishing makes no money and the MLA members are okay with donating their time, why not post the book content online in the members-only section of MLAnet and make access to them a benefit of membership? The cost of providing this content would be reduced for the MLA and the content itself would become available to (and searchable by) all members of the MLA, regardless of their institutions’ book budgets. If any members just HAVE to have an MLA book on paper, MLA can make them available for order via Lulu, shifting the cost of print copies exclusively to the reader.
2. Make an “open source” resource to compete with Doody’s Core Titles
Alan Fricker was the first person who put this idea in my head.
Know who writes reviews for Doody’s without compensation? Largely MLA members.
Know who makes the decision to include access to DCT in their budgets? MLA members.
Why couldn’t the MLA offer a platform that accomplishes the same thing as DCT and invite all of the Doody reviewers to instead review for the MLA? The argument for both librarians and other clinical professionals would be that, if the resource is made available to all MLA members as a benefit of membership, everyone’s libraries can be better-informed and reallocate the money that used to be spent on DCT towards other needs.
Perhaps a (free) Pligg installation in the members-only section of MLAnet would do the trick?
3. Create a hedges and filters wiki
A handful of people I know have spent a good bit of time trying to convince me that librarians sometimes actually prefer to hoard their expertise and would be unwilling to share the hedges and filters they’ve spent time developing and perfecting. I prefer to hope that hoarding is on its way out and that the better model of unrestrained sharing will completely supplant it. With copy-and-paste ease, it’d be a pretty easy kind of wiki for librarians to contribute to- and the usefulness to working librarians (and to those who train new librarians) would be enormous.
These are just three ideas. Are they bad ideas? What else would be a good Web project for the MLA to take on? Let me know in the comments?
Self-description: “Wikiecho is a project to create a free, up-to-date and reliable online resource covering the rapidly advancing field of echocardiography.” Intended Audience/Users: “This website is intended to be used by medical students, residents, physicians, cardiology fellows, cardiologists and cardiac sonographers.” Contributors: Anyone who registers. Editors/Administrators: Not listed. Editorial Policies: Minimal, available here.
Self-description: “WikiDoc is intended to be a shared resource for housestaff (in preparation for morning report), medical students (in preparation for morning rounds) and fellows (in preparation for conferences). Nurses and attending physicians may find it valuable to share and improve upon their fund of general medical knowledge.” Intended Audience/Users: “housestaff…medical students…fellows…Nurses and attending physicians.” Contributors: “Editors-in-chief” (who appear to be in charge of single pages or sections) must apply and be approved, but “[y]ou don’t need to be Editor-In-Chief to add or edit content to WikiDoc. You can begin to add to or edit text on this WikiDoc page by clicking on the edit button…” Anyone who registers can edit information on this Wiki. Editors/Administrators:Listed editorial board. Editor-in-Chief is C. Michael Gibson, M.S.,M.D., Harvard Medical School, Boston MA, USA Editorial Policies: None listed (aside from disclaimer) Additional notes: Wiki has a lot of pages on prescription drugs filled with content lifted (with attribution) from the NLM…but these pages are not locked- they can be edited by anyone who registers.
This is a good example of the kind of “Health 2.0” stuff that baffles me. The speaker in this video is Susannah Fox of the Pew Internet and American Life Project. She is speaking at the Health 2.0 Conference. You can watch the embedded video or read the text of her remarks (from here) beneath it.
After the market crash, there were quite a few people on the internet sidelines who were eager to say “I told you so” and warn people against the dangers of the internet. My favorite example is the 2001 press release from the American Medical Association suggesting that Americans make a New Year’s resolution to “trust your physician, not a chat room” since the information found online puts “lives at risk.”
So…is Fox actually disagreeing with those who think it wiser to seek advice from physicians than to take seriously medical advice received from anonymous strangers in internet chat rooms? As I see it, acting on medical advice from an unidentified, unqualified strangers on the internet can “put lives at risk.”I’d also really like to see that AMA 2001 press release- I haven’t been able to find it yet..
Of course most people ignored that advice and flocked online for health information, just as they ignored the advice of the recording industry and flocked to music downloading sites.
This analogy to the recording industry is a very poor one.
If a consumer illegally downloads an mp3 of a commercially-available pop tune instead of buying it on iTunes, he is essentially getting the same product (the same audio, compressed for fast downloads) in a superior version (no DRM) for a lower cost (free instead of about a buck). If a consumer goes to an unidentified stranger in a chat room, he’s probably not getting a qualified physician (at the very least, he has no assurance that the person he’s taking advice from has the appropriate education and skills to dispense advice), so he’s consuming a significantly inferior product.
When the RIAA advises people not to download songs illegally, they do so because they believe illegal downloads erode the profits of the recording companies. It cannot, however, be argued that pirated music could do harm to consumers. When the AMA advises that doctors are a more trustworthy source than strangers in chat rooms, they very well might be trying to protect the income of primary care physicians- but they’re also right that medical advice from unqualified, unidentified providers can cause harm.
But let’s give the AMA some credit. Inaccurate and outdated medical information does exist online.
To say that “[i]naccurate and outdated medical information does exist online” is an awful understatement that seems to erroneously imply that online healthcare misinformation is rare.
Medical librarians say people should check the source and date of the health information they find online. But few sites display those quality markers and few e-patients look for them.
First, medical librarians judge the quality of an online resource by a whole lot more than just the source and date.
Second, really reliable sites absolutely do display these markers. If few patients look for quality indicators, the reasonable solution is to help healthcare consumers be more discerning and to help guide them quickly to quality information. One way physicians and other healthcare providers can help their patients do this by directing them to MedlinePlus. Also, if consumers don’t have the information literacy to navigate the health information published online by authoritative institutions like the National Library of Medicine, how the heck are they going to sort through the inevitably massive amount of information put up by other consumers?
I do not believe that online resources collaboratively created by patients will solve the problems and dangers of healthcare misinformation online.
Let us say that a healthcare consumer has heard that ginkgo biloba will help improve his concentration. He visits MamaHerb (a consumer-created wiki for “natural remedies”) and decides there’s no reason why he shouldn’t start taking ginkgo.
MedlinePlus, on the other hand, goes into significant detail about potential risks and reasons why our consumer might want to reconsider or discuss with his physician before taking ginkgo.
Some will probably say that I’m defining “Health 2.0” too narrowly. After all, the term only makes sense if it refers to the application of “Web 2.0” trends to the needs of healthcare consumers. The Health 2.0 Conference apparently featured Phreesia, an service which I cannot work out a way to describe as “Web 2.0.”. Phreesia is an application which offers providers’ offices a convenient technology in exchange for the opportunity to market drugs to the patient. As a patient, I’m already annoyed with how badly physicians allow pharma marketing to infiltrate their offices and bombard their patients. So if “Health 2.0” is just a buzzword for “innovations in healthcare IT” or “the next generation of healthcare,” why bother with the “2.0” suffix?
…I tend to agree with T. Scott on these mattersDavid’s footnote: See T. Scott’s comments here, for several reasons. I don’t see any reason why librarianship journals as blogs should be singled out as a specialty (goose, gander, etc.) in this discussion, so I’ll talk about this more generally.
1) I believe there is value in having a final version of a manuscript on the record. Getting things out quickly isn’t the only goal in publishing a paper, or shouldn’t be. A larger goal is to contribute to the body of knowledge on a topic, in a way that can be cited and referred to and built upon in the future. If the idea is that authors would post their work to a blog and solicit comments, presumably that manuscript is in a constant revisional state, forever and ever, unless the authors finally shut down comments (at what point is the amount of critique enough?) and post a “final” version. This is perhaps more important when large flaws are detected, and it is nice to have a record of the final version of the manuscript. When citing it, are you citing the final version, or some version in which the author tweaked something in the post? If you cite it, will changes happen later that render your reference irrelevant? I think this process would make it harder to talk about what a given author said or did, and it also puts a tremendous amount of trust in the authors not to change things in a way that is dishonest or unethical. With an official “final” version, the author is officially on the record, and I think that’s an important concept.
2)”The argument for pre-publication peer review is that it filters out poor research.” Marcus seems to believe that this isn’t an issue for library research, or at least that the stakes aren’t high enough to matter. I would ask whether librarians seeking tenure and professional respect are really willing to hang themselves out there like this, simply assuming that what they’ve done is good enough for public consumption. Like Scott, I believe this simply isn’t true. Librarians are perfectly capable of producing research that, in its initial state, would be ripped to shreds by competent reviewers. I suspect that many would prefer that critique to happen more privately, to give them a chance to rethink their assumptions and presentation before opening themselves up to professional criticism and embarrassment.
3) Peer review takes work. When a committed board of peer reviewers exists with a demonstrated interest in the process and a deadline for providing feedback, and an editor does the work Scott mentions prior to publication, it is a certainty that an author will receive feedback. Blog comments are an unreliable thing. Commenters may never hit on the one true major flaw of a manuscript, may not have the expertise to critique to manuscript, or may simply not have time to digest a full manuscript in its raw form and suggest all of the appropriate revisions. The manuscript and the professional body of knowledge may suffer from this, as its not just the shiny, catchy papers that need feedback and critique.
4) Related to #3, it would be important to determine whether a manuscript was just open to whoever felt like commenting (or not), or if peer reviewers would be assigned drop by and comment. Would they be allowed to do so anonymously? Could an editor comment anonymously? If not, would the editor continue to make the needed comments Scott mentions about organization and content? I know some have advocated for peer review that is not anonymous, but I suspect that harsher, yet needed, criticisms might be held back if they had to be publicly written with a name and IP attached.
I’m not saying it couldn’t be done. These are just a handful of issues I see as barriers that would have to be considered. Ultimately, I think part of the question is whether we’re so determined as authors to put our unfiltered thoughts out there as fast as possible, or whether we’re really interested in being accountable and on the record and contributing to the professional knowledge base in a substantial way, even if it takes a little longer. I want to think about this a little longer.
The first of Rachel’s four points made me think about wikis. Since most articles on most wikis lack “final versions,” they might have the same problem that Rachel describes here. Imagine we have a wiki for an academic discipline where contributors are vetted professionals in their disciplines, where the administrators are transparently listed, where rigorous editorial policies are strictly enforced, and where there is an active community of revision that seeks to constantly improve entries. In this hypothetical, we’ll also imagine that the wiki is, for these reasons, considered an authoritative resource by most academics in the discipline it serves. In this hypothetical, how would such a resource be cited when, as Rachel points out, there may not be a “final” version? As it turns out, this isn’t really very hard because good wiki software includes a revision history for every pageHere’s an example of a history page from Wikipedia. Wikipedia itself suggests how it can best be cited in a way that clearly indicates what revision the citing author is referring to by including in the citation the date on which the information was retrieved from the Web. Where blogging software would fail to solve this problem is in that most blogging platforms do not have a convenient way of tracking revision history. Developers: Could we please have a WordPress plugin for “versioning” posts?
Getting it out quickly
When it comes to technology topics, I think that getting the information out quickly is especially important because the technology changes so dang quickly.
For a while there, I thought about TechEssence as kind of informal, blog-based journal on technology topics of interest to LIS people. It went without being updated for long periods and in recent months Roy Tennant has been the only person posting to it, but it is a good concept, isn’t it?
I think that library technologists would probably be mostly comfortable throwing their work onto the Web for immediate criticism and would, in fact, rely on their peers to examine their work critically. I mean, have you ever seen technologists discuss technology books? Most geeks I know seem to have a compulsion to get out the red pen and start correcting what they see as flaws.
So if Marcus moves forward with his goal of making a blog-based LIS journal (something I’m still not entirely convinced is a good idea), I’d suggest making technology its focus and developing a revision history plugin for WordPress.
The Journal of the European Association for Health Information and Libraries has a new issue out.
On page 41 of the PDF, check out an article by Ioana Robu (“Semantic Web applications in biology and medicine”) that updates “An introduction to the Semantic Web for health sciences librarians” (J Med Libr Assoc. 2006;94(2):198-205.) with information about semantic Web applications.
While you’re in that PDF, also consider checking out:
Benoit Thirion recommends recent literature starting on page 45.
Starting on page 47, Oliver Obst’s “Web 2.0” column makes notes on developments on the Web since the previous issue of the JEAHIL.
Probably should add this to the List of Medical Wikis…but perhaps I’ll hold off until it is out of private beta.
The mission of The Medpedia Project is to build and support a community of volunteers to organize — and make understandable — the world’s best information about medicine, health, and the body and to make it freely available through the website Medpedia.com.
The Medpedia.com website is currently in private beta. If you would like to join The Medpedia Project, apply to be a Contributor.
Contributors seek to compile the very best search results for 10,000’s of health related terms, as well as establish a neutral point of view in all the content on the site. Contributors know that Quality and Comprehensiveness on Medpedia.com is an ongoing work. Older pages tend to be more comprehensive and balanced, while newer pages tend to be shorter, and may temporarily contain misinformation or vandalism. Search results on Medpedia.com are continually edited and improved by Contributors, generally resulting in an upward trend of quality.
Medpedia.com is maintained by Medpedia.com Inc., a part of Ooga Labs, a technology greenhouse in San Francisco, and runs on Mediawiki, an open source software project which runs many wikis including Wikipedia. Like Wikipedia, the content created on Medpedia.com is freely licensable under the GNU Free Documentation License (GFDL).
Medpedia Board of Advisors
* Joseph B. Martin, MD, PhD — Former Dean of the Faculty of Medicine at Harvard University
* Linda Hawes Clever, MD, MACP — Clinical Professor, University of California San Francisco Medical School
* Gilbert S. Omenn, MD, PhD — Professor, University of Michigan Medical School
I’m interested to see the application to become an contributor…
…but I’m puzzled to see no critieria for the acceptance of applications.
As a way of building community, Medpedia is also starting up a blog network:
The Medpedia Blog Network is made up of Medpedia Contributors who are also high-quality bloggers that cover medicine and health. The Blog Network helps Contributors find new readers, and helps Medpedia users find other sites with relevant content.
Interesting to see another take on how to administer a medical wiki and it’ll be fun to see how it evolves.