{"id":2871,"date":"2009-07-16T22:11:05","date_gmt":"2009-07-17T03:11:05","guid":{"rendered":"http:\/\/pmedicine.org\/epatients\/?p=2871"},"modified":"2009-07-17T17:00:27","modified_gmt":"2009-07-17T22:00:27","slug":"shared-kismet-wikipedia-and-the-nih","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2009\/07\/shared-kismet-wikipedia-and-the-nih.html","title":{"rendered":"Shared Kismet: Wikipedia and the NIH"},"content":{"rendered":"

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

(For more details, please see the NIH press release<\/a>, a Wikipedia project page<\/a>, and a Wikimedia Blog post<\/a>.)<\/em><\/p>\n

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

This was my first attempt at live-tweeting an event and I am grateful that I was joined by Jess Palmer<\/a> and Craig Hicks<\/a>.\u00a0 Since Twitter is not a good archive<\/a>, I will reproduce my notes here, from the first to the last, calling out my favorite quotes:<\/p>\n

Event sponsored by NIH Office of Communications + Wikimedia Foundation #nihwiki<\/a><\/span><\/span><\/p>\n

John Burklow, NIH: wake up call re health comm; Wkipedia is first stop for many; NIH is highest quality info <\/span><\/span><\/p>\n

Marin Allen, NIH: we are all public servants, all want trustworthy medical info, shared goals are kismet<\/span><\/span><\/p><\/blockquote>\n

Marin Allen, NIH: Wikimedia setting up hotline for NIH editors <\/span><\/span><\/p>\n

Frank Schulenberg, Wikimedia: Wikipedia does not work in theory, but only in practice.<\/span><\/span><\/p><\/blockquote>\n

Schulenberg, Wikimedia: NIH is first federal agency to host Wikipedia Academy<\/span><\/span><\/p>\n

Schulenberg, Wikimedia: we hope to infect you with our passion <\/span><\/span><\/p><\/blockquote>\n

Jennifer Riggs, Wikimedia: We are lucky emissaries; mission-driven, most-visited site for info (comscore data) <\/span><\/span><\/p>\n

(Event is being recorded for future trainings; NIH and Wikimedia photogs are capturing the 75+ attendees)<\/span><\/span><\/p>\n

Riggs: “Wiki quality” means multiple POV but no opinions; experts can contribute, but so can others<\/span><\/span><\/p>\n

(Not sure I got that last point right – I will ask + refine since it is potentially massive)<\/span><\/span><\/p>\n

[@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)] <\/span><\/span><\/p>\n

[Jennifer Riggs posted in the comments: “My statement: encyclopedia articles are best, (and Wikipedia\u2019s strength includes) when people with multiple perspectives collaborate to write content with a neutral point of view (NPOV).”]<\/p><\/blockquote>\n

Tim Vickers, Wikipedia volunteer and scientist: scientific literacy is low, challenge for NIH and us all <\/span><\/span><\/p>\n

Vickers: just published JAMIA study<\/a> showing Wikipedia results in top ten of 80pct of health searches on 3,600 keywords<\/span><\/span><\/p>\n

Vickers: #H1N1<\/a> 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<\/span><\/span><\/p><\/blockquote>\n

Vickers: Wikipedia medical articles should be summaries of literature; 60-70pct of diseases have an article<\/span><\/span><\/p>\n

Vickers: our main rival is media (a comparison shows how shallow a MSM article vs the “web of info” in a Wkipedia article) <\/span><\/span><\/p>\n

Vickers: articles vary in size and quality: 14k stubs in molec bio, 3k starts, up the scale to 29 “features”<\/span><\/span><\/p>\n

First question from NIH: is quality correlated w article length? <\/span><\/span><\/p>\n

Vickers: Best predictor of qual is number of times it’s been edited, also number of references<\/span><\/span><\/p>\n

NIH q: what abt including dosages from PDR<\/a>? First do no harm<\/span><\/span><\/p>\n

Vickers: Wikipedia does not seek to replace health pro; aim to provide right info, within bounds<\/span><\/span><\/p>\n

[@jesspalmer captured his point better: Vickers: An online encyclopedia can never replace the physician-patient relationship \u2013 that would be absurd]<\/span><\/span><\/p><\/blockquote>\n

NCI q: wary of anonymous editors <\/span><\/span><\/p>\n

Vickers: Net is anon medium; we must scale, so onus is on cited sources, not personal credentials <\/span><\/span><\/p>\n

NIH q: language and translation? Vickers: case by case by volunteers <\/span><\/span><\/p>\n

NIH q: diverse audiences and accessibility? Vickers: broad overview – daunting task – teachers, not scientists do these well <\/span><\/span><\/p>\n

Compare Wiki edits and scientific peer review? V: Remember that MSM is filter for sci journals – Wikipedia is third way, a bridge <\/span><\/span><\/p>\n

NIH q: how deal w deleted comments V: called edit wars – bring in wider community, guided by mainstream sources, fair summaries <\/span><\/span><\/p>\n

William Wedemeyer, Wikipedia editor and scientist: why contrib? Broader impact: science outreach and educ <\/span><\/span><\/p>\n

Wedemeyer: collaboration w other researchers and educators – improve your lectures and other communications<\/span><\/span><\/p>\n

Wedemeyer: WP articles are like Cell mini-reviews; personal authority counts for nothing; no original data<\/span><\/span><\/p>\n

Wedemeyer: WP has “librarian function” that NIH could take advantage of <\/span><\/span><\/p><\/blockquote>\n

Wedemeyer: “See also” and “Further reading” sections are librarian functions<\/span><\/span><\/p>\n

Wedemeyer: Wiki to print – anyone can request any assortment of articles and print book will be mailed<\/span><\/span><\/p>\n

Wedemeyer: Selfless amateurs have begun the work. WP invites you, the top scientists, to join them<\/span><\/span><\/p><\/blockquote>\n

Wedemeyer: shocked by price of textbooks, many of his students can’t afford: can WP help?<\/span><\/span><\/p>\n

Wedemeyer: led student project comparing WP vs Britannica on protein science (me: sorry, not convincing parallel to textbks) <\/span><\/span><\/p>\n

Wedemeyer: As scientists it is our calling to provide knowledge to the world, I hope you answer that call<\/span><\/span><\/p><\/blockquote>\n

[@jesspalmer captured another quote: Wedemeyer: “Our wealth is about uncovering knowledge and sharing knowledge]<\/span><\/span><\/p>\n

NIH q: tell more abt quality rankings. W: lists and images are easy to upload but don’t illuminate fully<\/span><\/span><\/p>\n

NIH science writer q: inspired by your remarks bc what I do is perfect for the lead section and scientists can refine<\/span><\/span><\/p>\n

NIH q: how to tell greatest need? WP: requested articles list – red links in articles <\/span><\/span><\/p>\n

NCI q: editorial boards are our great resource, how can they contrib? WP: if text is in pub domain we can marry to volunteers<\/span><\/span><\/p>\n

John Broughton, author of Wikipedia – The Missing Manual: what is a good article? Factually accurate, verifiable, neutral<\/span><\/span><\/p>\n

Broughton: only info from a “reliable, published source” (me: what is defintion of published? @DocJohnG<\/a> @gfry<\/a> ran into this) [See: Wikipedia\u2019s Arcane Rules Censor Health Information<\/a>]
\n<\/span><\/span><\/p><\/blockquote>\n

(Wonder if there are other exceptions for “notability” besides science and medicine?) <\/span><\/span><\/p>\n

Broughton: Most vandals are unoriginal and easily caught <\/span><\/span><\/p><\/blockquote>\n

Broughton: NB: IP address is less anonymous than a registered username on WP <\/span><\/span><\/p>\n

Broughton: “notability” defined by coverage – need secondary sources to prove – says not a prob for science, even #rare<\/a> disease <\/span><\/span><\/p>\n

Broughton: a good citation is like a godclass weapon on Wikipedia – removing your edit is deemed vandalism<\/span><\/span><\/p><\/blockquote>\n

Broughton: blogs are not as reliable, verifiable as a MSM source (likens blogs to selfpublished books) #fightingwords<\/a><\/span><\/span><\/p>\n

Participation is coin of WP realm (reminds me of @PatientsLikeMe<\/a> and other online communities that confer power to the active) <\/span><\/span><\/p><\/blockquote>\n

Broughton showing the WP Editor’s index to answer q re copyright <\/span><\/span><\/p>\n

NIH q: is our website a reliable source? WP: (incredibly, I think he is saying no – will follow up)<\/span><\/span><\/p>\n

Clarification: NIH website *is* credible source for scientific info, not for “self-promo” (NIH is the greatest!) info<\/span><\/span><\/p>\n

Kevin Clauson emailed me a q which inspired great lunch convo: will NIH give scientists credit for contributions?<\/span><\/span><\/p>\n

Burklow said NIH had no plans to formalize credit, but saw value; Wedemeyer and Vickers said credit for time spent is key barrier <\/span><\/span><\/p>\n

Phew!<\/p>\n

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<\/a> whose article<\/a>, “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”<\/a> moment for me (only in terms of pulling an expert into the conversation, NOT that Vickers was loud or obnoxious – quite the opposite!).<\/span><\/span><\/p>\n

Social media, FTW<\/a>!<\/p>\n

 <\/p>\n","protected":false},"excerpt":{"rendered":"

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