Shared Kismet: Wikipedia and the NIH

The National Institutes of Health hosted a Wikipedia Academy today to train scientists, communications staff, and other NIH staffers in how to contribute to what has become a top source for health information in the U.S.

(For more details, please see the NIH press release, a Wikipedia project page, and a Wikimedia Blog post.)

The NIH communications team invited me to observe this continuation of the conversations we had started about participatory medicine in June and September 2008. It was amazing to be there to see these two learning cultures meet for the first time.

This was my first attempt at live-tweeting an event and I am grateful that I was joined by Jess Palmer and Craig Hicks.  Since Twitter is not a good archive, I will reproduce my notes here, from the first to the last, calling out my favorite quotes:

Event sponsored by NIH Office of Communications + Wikimedia Foundation #nihwiki

John Burklow, NIH: wake up call re health comm; Wkipedia is first stop for many; NIH is highest quality info

Marin Allen, NIH: we are all public servants, all want trustworthy medical info, shared goals are kismet

Marin Allen, NIH: Wikimedia setting up hotline for NIH editors

Frank Schulenberg, Wikimedia: Wikipedia does not work in theory, but only in practice.

Schulenberg, Wikimedia: NIH is first federal agency to host Wikipedia Academy

Schulenberg, Wikimedia: we hope to infect you with our passion

Jennifer Riggs, Wikimedia: We are lucky emissaries; mission-driven, most-visited site for info (comscore data)

(Event is being recorded for future trainings; NIH and Wikimedia photogs are capturing the 75+ attendees)

Riggs: “Wiki quality” means multiple POV but no opinions; experts can contribute, but so can others

(Not sure I got that last point right – I will ask + refine since it is potentially massive)

[@jesspalmer noted to me: I think Riggs said Wikipedia strives to have multiple *perspectives* and no POV. (If that's possible, it's hard to do)]

[Jennifer Riggs posted in the comments: "My statement: encyclopedia articles are best, (and Wikipedia’s strength includes) when people with multiple perspectives collaborate to write content with a neutral point of view (NPOV)."]

Tim Vickers, Wikipedia volunteer and scientist: scientific literacy is low, challenge for NIH and us all

Vickers: just published JAMIA study showing Wikipedia results in top ten of 80pct of health searches on 3,600 keywords

Vickers: #H1N1 article: traffic spiked on Apr24 at 1.3MM per day, leveled off to 30K (now only medical rival is vitiligo article bc of Michael Jackson

Vickers: Wikipedia medical articles should be summaries of literature; 60-70pct of diseases have an article

Vickers: our main rival is media (a comparison shows how shallow a MSM article vs the “web of info” in a Wkipedia article)

Vickers: articles vary in size and quality: 14k stubs in molec bio, 3k starts, up the scale to 29 “features”

First question from NIH: is quality correlated w article length?

Vickers: Best predictor of qual is number of times it’s been edited, also number of references

NIH q: what abt including dosages from PDR? First do no harm

Vickers: Wikipedia does not seek to replace health pro; aim to provide right info, within bounds

[@jesspalmer captured his point better: Vickers: An online encyclopedia can never replace the physician-patient relationship – that would be absurd]

NCI q: wary of anonymous editors

Vickers: Net is anon medium; we must scale, so onus is on cited sources, not personal credentials

NIH q: language and translation? Vickers: case by case by volunteers

NIH q: diverse audiences and accessibility? Vickers: broad overview – daunting task – teachers, not scientists do these well

Compare Wiki edits and scientific peer review? V: Remember that MSM is filter for sci journals – Wikipedia is third way, a bridge

NIH q: how deal w deleted comments V: called edit wars – bring in wider community, guided by mainstream sources, fair summaries

William Wedemeyer, Wikipedia editor and scientist: why contrib? Broader impact: science outreach and educ

Wedemeyer: collaboration w other researchers and educators – improve your lectures and other communications

Wedemeyer: WP articles are like Cell mini-reviews; personal authority counts for nothing; no original data

Wedemeyer: WP has “librarian function” that NIH could take advantage of

Wedemeyer: “See also” and “Further reading” sections are librarian functions

Wedemeyer: Wiki to print – anyone can request any assortment of articles and print book will be mailed

Wedemeyer: Selfless amateurs have begun the work. WP invites you, the top scientists, to join them

Wedemeyer: shocked by price of textbooks, many of his students can’t afford: can WP help?

Wedemeyer: led student project comparing WP vs Britannica on protein science (me: sorry, not convincing parallel to textbks)

Wedemeyer: As scientists it is our calling to provide knowledge to the world, I hope you answer that call

[@jesspalmer captured another quote: Wedemeyer: "Our wealth is about uncovering knowledge and sharing knowledge]

NIH q: tell more abt quality rankings. W: lists and images are easy to upload but don’t illuminate fully

NIH science writer q: inspired by your remarks bc what I do is perfect for the lead section and scientists can refine

NIH q: how to tell greatest need? WP: requested articles list – red links in articles

NCI q: editorial boards are our great resource, how can they contrib? WP: if text is in pub domain we can marry to volunteers

John Broughton, author of Wikipedia – The Missing Manual: what is a good article? Factually accurate, verifiable, neutral

Broughton: only info from a “reliable, published source” (me: what is defintion of published? @DocJohnG @gfry ran into this) [See: Wikipedia’s Arcane Rules Censor Health Information]

(Wonder if there are other exceptions for “notability” besides science and medicine?)

Broughton: Most vandals are unoriginal and easily caught

Broughton: NB: IP address is less anonymous than a registered username on WP

Broughton: “notability” defined by coverage – need secondary sources to prove – says not a prob for science, even #rare disease

Broughton: a good citation is like a godclass weapon on Wikipedia – removing your edit is deemed vandalism

Broughton: blogs are not as reliable, verifiable as a MSM source (likens blogs to selfpublished books) #fightingwords

Participation is coin of WP realm (reminds me of @PatientsLikeMe and other online communities that confer power to the active)

Broughton showing the WP Editor’s index to answer q re copyright

NIH q: is our website a reliable source? WP: (incredibly, I think he is saying no – will follow up)

Clarification: NIH website *is* credible source for scientific info, not for “self-promo” (NIH is the greatest!) info

Kevin Clauson emailed me a q which inspired great lunch convo: will NIH give scientists credit for contributions?

Burklow said NIH had no plans to formalize credit, but saw value; Wedemeyer and Vickers said credit for time spent is key barrier


I loved receiving emails and direct messages of encouragement and questions while I was tapping away on my Blackberry, including some excellent exchanges with Kevin Clauson whose article, “Scope, Completeness, and Accuracy of Drug Information in Wikipedia,” was cited by Tim Vickers in his remarks. It was kind of a health geek, Marshall MacLuhan in “Annie Hall” moment for me (only in terms of pulling an expert into the conversation, NOT that Vickers was loud or obnoxious – quite the opposite!).

Social media, FTW!


Posted in: positive patterns





27 Responses to “Shared Kismet: Wikipedia and the NIH”

  1. SusannahFox says:

    Shared Kismet: Wikipedia and the NIH (new post on #nihwiki

  2. This was frickin’ awesome. Thanks.

    What struck me more than anything was that Wikipedia strives to have multiple perspectives (or whatever Jennifer said); “experts can contribute, but so can others.” Such a contrast against Medpedia, which pretends that expertise (or not) is detected by presence (or not) of a degree, despite evidence to the contrary.

    Now I gotta go see Annie Hall again.

  3. Judson says:

    Very interesting reading your take on the NIH thing. I am a Wikipedian, who works in healthcare also, although I don’t focus on healthcare in Wikipedia.

    To answer one of your specific questions, “Wonder if there are other exceptions for “notability” besides science and medicine?” I wouldn’t phrase it that way (as exceptions), but yes there are notability guidelines for every useful topic.

    It’s pretty straightforward if you think of it like a review article. Wikipedia does not want to publish anything original, or make decisions of truth.

    It might seem weird, but Wikipedia doesn’t replace healthcare forums. It’s not ok to post information from forums because it’s not reliable, even if it would be helpful to patients (this would require that we make that designation, which is unacceptable). From the manual of style, “Although healthcare professionals and patients may find much of interest, they are not the target audience”. But of course, consensus can change, and what constitutes a reliable source is always hotly debated.

  4. Judson says:

    Regarding the different POVs, what we strive for is neutrality. Not everyone’s individual point of view, but an unbiased, factual statement regarding the different opinions that exist. This formulation allows non-experts to help also, since it’s not about expert opinions vs non-expert opinions. Editors should strive to not introduce their opinion *at all*. Experts are very helpful though since they can better explain the state of knowledge about a topic.

    For a non-healthcare related example in action, see Creationism, or any other controversial topic you can think of. :)

  5. Susannah Fox says:

    Dave, if there was a Susannah Fox channel, “Annie Hall” would be on once a day! Definitely worth seeing again.

    Judson, thanks so much for those clarifications. Wikipedia is public service and you are writing the rules of intellectual engagement online. Have you heard about the talk given by Mark Pesce at the Personal Democracy Forum in late June?

    Here is a link to Pesce’s blog:

    Here is a link to the text of his remarks:

    I’d love to hear what you (and others) think about what he said and how it fits in with our discussions about participatory medicine.

  6. RT @mpesce: US NIH training scientists/doctors to add/edit/built upon Wikipedia (#1 health resource globally) –

  7. RT @mpesce US NIH training scientists/doctors to add/edit/built upon Wikipedia (#1 health resource globally) –

  8. jess palmer says:

    Nice write-up, Susannah! You’ve captured so much of the content here!

  9. Tim Vickers says:

    I uploaded my presentation, hopefully hear from you doon. Tim

  10. RT @mpesce: US NIH training scientists/doctors to add/edit/built upon Wikipedia (#1 health resource globally) –

  11. My statement: encyclopedia articles are best, (and Wikipedia’s strength includes) when people with multiple perspectives collaborate to write content with a neutral point of view (NPOV).

  12. Susannah Fox says:

    Thanks for posting your slides, Tim!

    If you have a chance, check out Mark Pesce’s treatise on the mismatch of Wikipedia and the Church of Scientology. The last line is pretty powerful: “Sharing power is not an ideal of some utopian future; it’s the ground truth of our hyperconnected world.”

  13. Susannah Fox says:

    Jennifer, thanks for the clarification! I just added your statement to the post.

    I’ll quote once again from Ted Eytan who says that “no communication is ever over” and “everything gets more accurate with more interaction.” That is clearly the driving philosophy here.

  14. Shared Kismet: Wikipedia and the NIH |

  15. Judson made this comment “It might seem weird, but Wikipedia doesn’t replace healthcare forums. It’s not ok to post information from forums because it’s not reliable, even if it would be helpful to patients (this would require that we make that designation, which is unacceptable).”

    So wikipedia is a massive web 2.0 application that doesn’t believe that web 2.0 applications are of value? Why is data entered in wikipedia valuable and reliable while data entered in a community of 2,000 people suffering from a rare condition is not? I would really love to hear from some of the people involved in the wikipedia academy. More than 10 years ago, the director of the National Cancer Institute and most of the communication department at this NIH institute understood the value of some medical online communities. What will it take for Wikipedia to do the same?

  16. Judson says:

    I hadn’t read that yet, thanks for linking. It is interesting, and I agree with it pretty much. I wouldn’t say we have turned a corner though with the Obama election, we’re just on a slope that we have always been on. (The election was an interesting point on that slope though, but I wouldn’t call it an inflection, the next steps he refers to might be close at hand also.)

    The essay remind me of Kevin Kelly’s posts also very interesting.

    The only thing I would push back a little on is the phrasing of the Scientology/Wikipedia issue like a “war”. This seems very interested in conflict. I think Wikipedia would culturally deny a conflict even if the other party wanted it. Of course just because both sides don’t think of it like a conflict doesn’t mean it isn’t one, and this is certainly a consideration for hierarchies interacting with adhocracies.

    One of the things I do with Wikipedia is answer emails sent to the contact address (copyright violations, questions, etc). One of the things that is most striking is how incredulous people are when faced with the fact that Wikipedia isn’t a hierarchy. They know that it’s not at some level, but they still deep down feel that there are people in charge who can tell other people what to do without convincing them.

    It is sometimes difficult for hierarchies to interact with Wikipedia, (although in my opinion that is the key role of the Foundation) but I don’t think it is nearly as hard for individuals to. That’s why things like this NIH academy are so great, explaining it to people, who are also experts, is very useful.

    I don’t think anyone disputes that ACOR and other healthcare forums are of value. Obviously a group of 2,000 people with a rare medical condition is of incredible scientific value. NIH and NCI would certainly be wise to use these forums to the fullest potential, which I don’t think they do yet. What I’m saying though, is that Wikipedia is different from the NIH. Wikipedia is not doing scientific research. ACOR might lead an NIH researcher to do a study, or may do a study directly on ACOR data, *that* study would be ideal for Wikipedia. The “raw” ACOR data wouldn’t be though.

    It’s not that Wikipedia is saying that ACOR and its data aren’t valuable, it just that it’s not in a format that a lay person can verify as fact. Wikipedia is an encyclopedia, our citations need to be to places that people can trust implicitly. Linking to a forum post implies not that you trust the source, but that you trust the wikipedia editor. We don’t ask that you trust the random editor who added the link, as Broughton says above: a good citation is like a godclass weapon.

    (sorry for the crazy long comment!)

  17. Susannah Fox says:

    We welcome crazy long comments! Thanks so much for the clarifications and amplifications.

    Since this blog had chronicled a debate on Wikipedia about sources, I had my antennae up for just the point you are making: “our citations need to be to places that people can trust implicitly.”

    I’m fascinated that the New York Times was cited by John Broughton during the #nihwiki event as an implicitly trustworthy source. Are there any online-only publications which meet that standard? Where do we draw the line? I love the Grey Lady, but I also think facts exist elsewhere than in traditional media outlets.

  18. Judson says:

    Oh yes, there are definitely online-only publications people would call reliable. I’m not really close to the sub-community that discusses reliable sources, but it’s not done by automatons, and Wikipedians are in general “online people”. :) This blog for example could be a source for some things. It’s not set in stone, and there are always debates. For example, is a non-english news source an ok source for English Wikipedia? Even though most readers can’t verify or read it? How do we feel when it can be proven that NYT articles are no more correct than blog posts? It’s all in flux. :) The whole reliable source concept is a “guideline” in wikipedia-talk which is below policy in terms of authority, exceptions to guidelines are expected.

  19. [...] of research. There was a lot of interest event within NIH and beyond: notices hit the blogosphere (see here and here, and here and, yes, tweeters were also in the room. In a Web 2.0 world, this kind of [...]

  20. SusannahFox says:

    @jonmrich Re Wikipedia quality – I wrote about the NIH Wikipedia Academy event, including discussion of info quality:

  21. SusannahFox says:

    One of my favorite livetweet moments was pulling @kevinclauson into the NIH Wikipedia Academy

  22. SusannahFox says:

    Another example of the NIH opening up to social media, from '09: #nih #science #wikipedia

  23. amnews says:

    RT @SusannahFox

    Another example of the NIH opening up to social media, from '09: #nih #science #wikipedia

  24. Kevin Kruse says:

    RT @SusannahFox: Another example of the NIH opening up to social media, from '09:

  25. someway says:

    A good article. Very useful.

  26. [...] the media was ahead of me. The Washington Post sent a reporter, the blogosphere was alight (see here and here and here) and twitterers, too. This is exactly the kind of attention NIH [...]

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