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Home » Positive Patterns » 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!