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Wikipedia and Medicine

James Heilman

MD, CCFP(EM)

All text is under a CC-BY-SA license

Wiki Project Med Foundation

Andrew G. West

PhD

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A little about myself

Small town ER doc
Some academic affiliation but am a long way from my University (~800 Km)
Became involved in 2007/2008 after coming across a poor quality medical articles
An active volunteer ever since

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?

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Is Wikipedia Read by Nearly Everyone?

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Medical stats

Wikipedia’s medical content received ~5 billion page views for 160,000 articles in 2013
2-3% of all pageviews for Wikipedia are for health (0.6% of articles)
Half of this views were for English, the other half were in the other 275 languages

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Medical stats

50% to 100% of physicians use Wikipedia
35 to 70% of pharmacists admit to its use⁽³⁾
Most frequently used source by junior MDs (besides Google)
93% of medical students use Wikipedia

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Why do medical students use Wikipedia?

“The use of Wikipedia is almost ubiquitous throughout medical school for medical education. The ease of access and understanding, as well as readily usable and consumer-friendly interfaces, means students often turn to this, rather than traditional authoritative resources. While the reliance on Wikipedia reduces throughout medical school, this is likely due to confidence and ability to concurrently use other resources as well as perceived reduced reliability. Medical school administrators would benefit from embracing and developing web2.0 resources and include their use in ongoing dynamic medical education.”

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Does Wikipedia Cover Nearly Everything?

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Size of the medical content across all languages

Equivalent to ~126.9 volumes of the Encyclopedia Britannica

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Does Wikipedia Have a Huge Number of Editors?

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A few numbers

Anyone can edit (22 million registered accounts), many more editing anonymously
80,000 people contribute >5 edits a month
12,000 people contribute more than 100 edits a month
All volunteers working for free

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Medical numbers

1.1M edits by 224,000 accounts.
410,000 were in English by 92,672 accounts
274 editors made more than 250 edits in 2013

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English Wikipedia only

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Who are they?

Half health care professionals
52% have either a Masters, PhD or MD
33% have a Bachelor's degree
80% male, 10% female, 10% would rather not say
Many of the non professionals are fixing grammar or doing other maintenance

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Why do they edit?

Positive about Wikipedia
Feel a responsibility to help others
Learning
Fun!

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?

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Is Wikipedia Peer Reviewed?

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Collaborations

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Cochrane

31,000 members from 120 countries which work on high quality synthesis of the medical literature
WiR, Sydney Poore, former nurse, very experienced Wikipedian
Developing a weekly mailing list for all new / updated reviews
Speaking at the Cochrane Colloquium, India
Knowledge translation
wikipedian@cochrane.org

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Largest cancer charity in the UK
Recently hired their first WiR, John Bryne
Currently concentrating on improving brain, pancreatic and esophageal cancer articles
Has begun donating images
John.Byrne@cancer.org.uk

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Collaborating on definitions of disease
Currently a pilot project
Editing time given at work

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Health Information for All in a Language of their Choice

(16)

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Who are involved?

Translators Without Borders

An NGO founded in 1993
Humanitarian translations into other languages

Wikiproject Medicine

A group of volunteers within Wikipedia who are interested in improving medical content

Wikipedians in many languages

Wiki Project Med

Foundation

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What we are working on?

Creating a base set of medical topics that should exist in all languages
Improving them to a professional standard in English while trying to keep language simple
Translating content into as many other languages as possible
Integration the translations with existing Wikipedia content
Get easy and inexpensive access for everyone (including via collaborations with cell phone companies)

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Two tracks of article

Full articles
Brought to GA/FA
2500-15000 words
Goal is 100
Suitable for mid to large languages

Short articles
3 to 4 paragraph overviews
Leads of English articles
Goal is 1,000
Suitable for small to mid languages

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Why do we need this?

Every day tens of thousands die for lack of low cost health care. Per HIFA 2015, a major factor is poor access to information⁽⁵⁾

8 of 10 caregivers do not know the key symptoms of pneumonia
4 of 10 mothers believe fluids should be withheld if their child has diarrhea
More than 60% of Africains said that a friend or family member could have been saved if they’d had information in their own language

Wikipedia is a viable way to address this knowledge gap.

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Why other languages?

Issue: Little health care content exists in many languages
Problem: Partly because majority of medical research/publications in English
Solution: Translate from English into other languages

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European: German, French, Italian, Spanish, Dutch, Polish, Russian, Portuguese, Swedish

Wikipedia is now available in 286 languages. That sounds great until you think that there are over 6000 living languages in the world today. There are around 2000 languages in Africa alone. These are the languages the majority of people in the world live in, work in, laugh in - raise their children in. The majority of people on this planet don't speak one of the dominant world languages. And if they don't speak one of those languages, like English, Dutch, German, French, which are, by the way, the top 4 Wikipedia languages, they have little or no access to the sum of all human knowledge.

The Wikimedia vision of everyone sharing freely in knowledge will not become a reality until the barrier of language comes down. Even among the 286 languages that have their own Wikipedias, there are wide disparities in how much information is actually available. Even in Wikipedia there are rich languages and there are poor languages.

Very little health care information exists in other languages. Thus we have a significant portion of the population in some areas of the world who believes that malaria is caused by "witches" and AIDs is cured by having sex with a virgin.

Wikipedia is now available in 286 languages. That sounds great until you think that there are over 6000 living languages in the world today. There are around 2000 languages in Africa alone. These are the languages the majority of people in the world live in, work in, laugh in - raise their children in. The majority of people on this planet don't speak one of the dominant world languages. And if they don't speak one of those languages, like English, Dutch, German, French, which are, by the way, the top 4 Wikipedia languages, they have little or no access to the sum of all human knowledge.

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The Digital Last Mile

Those in the developing world have poor access to computers / the Internet
Problem: Cell phones widespread but data charges are expensive
Solution: Convince cell phone companies to allow Wikipedia access without data charges
The WMF has signed agreements with cellphone companies to give access free of data charges to ~350 million people in Africa, the Middle East, Asia and Eastern Europe.

There have been some significant technological changes that are putting Wikipedia within the reach of more people than ever before. Mobile technology is knocking down the physical barriers to the Internet for people in the developing world. The digital last mile is being bridged so more than ever we need to think about the language last mile.

Bridging the digital last mile is relatively new. When Wikipedia, the world's greatest collaborative project in history, first started, billions were left out of Wikipedia's riches, as they were left out of the internet, because of lack of physical access. Entrenched in poverty, living on a dollar a day, internet connectivity was inconceivable.

Lack of Internet connectivity meant that the fabulous wealth of knowledge of Wikipedia was just available to those who were already relatively wealthy. No Internet meant that the majority world would have little to NO access to critical medical information.

Fortunately, three technological advances are bridging the digital divide between the digital haves and the digital have nots; between those of us who can access the riches of the internet, and those who cannot.

The first advance that is bridging the digital divide is, of course, the proliferation of mobile devices. Today, to take the example of the least connected continent, 65% to 75% of the citizens of Africa have access to a cellphone. And many of those cellphones are able to connect to the Internet. In fact, for the 31% of the developing world that is online, the cellphone is the device of choice for Internet connectivity. In Africa, 4 times as many people are surfing the web by mobile phones as by computer.

The availability of cheap, mobile telephony, and of smart phones that are dropping in price all the time, is bringing the internet, finally, into the hands of more and more people. Even people who are living on two dollars a day, connecting up to the world is so important that they will do without a meal, or will walk rather than take the bus, just to pay to recharge their cell phone. People who earn two dollars a day are willing to spend 12 cents a day on their phone. That's how important it is to them.

But the explosion of cellphone access is not enough on its own. Poor people tend to use their phones for the cheapest of activities: sending SMS messages. For those people living at the bottom of the economic pyramid, there are major financial barriers to accessing knowledge. Data charges are a huge barrier to the internet for most of the developing world.

That's why the second big advance, Wikipedia Zero, is so exciting. For those of you who don't know about this potentially world-changing initiative, Wikipedia Zero offers access to Wikipedia, free of all data charges, in countries where agreements have been signed with the telecommunications companies.

Today Wikipedia is available, free of data charges, in Uganda, Tunisia, Malaysia, Niger, Kenya, Montenegro, Cameroon, Ivory Coast, Thailand, Saudi Arabia, The Democratic Republic of Congo, Botswana, Indonesia, Pakistan, Sri Lanka and India. And this is just the beginning.

The next challenge: not all of the world's poor have access to a smart phone. So Wikimedia, with South Africa's Praekelt Foundation are working on the USSD protocol to enable the wealth of Wikipedia's knowledge to be available on a basic or feature phone. A mother will be able to query something, such as malaria, and get back 10 lines about malaria on her tiny cellphone screen.

So the technology that wasn't here when Wikipedia started is here today to bridge the digital last mile. This is fantastic news. But now it's up to us to empower communities to bridge the language last mile for their languages.

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Successes

Working on content in nearly 100 languages (hoping to expand to all 286 languages and beyond)
more than 4 million words translated
Some languages have improved content specifically for their audience
24 GAs/FAs in their respective language

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Difficulties

Translators are not big fans of MediaWiki markup (we have it colored to make it a bit easier)
Some technical words do not exist in some of the languages
Simplification before translation is important but difficult
Some are against translation wanting content developed in their own language de novo
Trouble recruiting Wikipedians in some languages

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Started in 2011
A textbook based partly on Wikipedia content
Will arrange content so that page numbering matches that of other similar texts
Used in 2000+ US colleges by 3 million students
One class at least is using it as their primary textbook
Competitors sued and settled / lost

Wikipedia Based Textbooks

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No attribution, not under the same license
At least 44 of them

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Bringing Wikipedia’s medical articles to FA followed by publication under the authors real names
First article has completed formal peer review at Open Medicine and to be published soon
Other journals also interested including JMIR
Academic credit for Wikipedians

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Placed on the talk page of articles
Link to TRIP clicked on about 100x per month

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Medical Student Elective

Two semesters of students (5 and 7)
4 weeks to be working on just Wikipedia
Number of mainspace edits per student (29 and 25)
Most began work midway through the elective
Average number of days editing (7.8 and 7.6)
Struggled with consistently formating per the WP:MEDMOS

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Mount Sinai Medical Student Club

28 members
couple of meetings to edit medical content

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More schools running projects

Great potential

we need more editors

Not scalable

new editors need feedback
retention is low
unclear how to improve understanding of guidelines

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Wiki Project Med Foundation

An NGO incorporated in NY state
100 members (mostly Wikipedians)
From 20 countries
Trying to support collaboration between language versions
No authority over any language version
Working on collaborations with other entities

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Is Wikipedia reliable?

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Verifiability not Truth
Depends on definitions and compared to what
As accurate as Britannica in 2005
More research needed

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Reference, Reference, Reference

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WP:MEDRS

[10]

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Most commonly used journals

Lancet
NEJM
Nature
BMJ
JAMA
Science
Cochrane

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Further research:

Comparing students performance on a standardized exam
With Wikipedia
With Uptodate
With Nothing

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Used by a lot of schools to detect “copy and paste” issues
Has agreed to give Wikipedia free use
Plan is to run each new edit over a certain size as it comes in through the software and flag if concerns
Need programmer to lead efforts

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Questions?

James Heilman

jmh649@gmail.com

http://enwp.org/User:Jmh649

“Imagine a world in which every single person on the planet is given free access to the sum of all human knowledge. That's what we're doing.”

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References

http://en.wikipedia.org/wiki/Wikipedia:WikiProject_Medicine/Popular_pages
http://en.wikipedia.org/wiki/Wikipedia:WikiProject_Pharmacology/Popular_pages
Heilman JM, Kemmann E, Bonert M, et al. (2011). "Wikipedia: a key tool for global public health promotion". J. Med. Internet Res. 13 (1): e14.doi:10.2196/jmir.1589. PMID 21282098.
"Usage of content languages for websites". W3Techs.com. Retrieved 30 December 2011.
http://www.hifa2015.org/about/why-hifa2015-is-needed/
http://infodisiac.com/blog/2012/02/wikipedia-readers/
http://reportcard.wmflabs.org/
http://en.wikipedia.org/wiki/List_of_languages_by_number_of_native_speakers#More_than_100_million_native_speakers
http://en.wikipedia.org/wiki/Wikipedia:Size_of_Wikipedia
http://xkcd.com/285/
http://en.wikipedia.org/wiki/Wikipedia:IPs_are_human_too
http://commons.wikimedia.org/wiki/File:Jimmy_Wales_Fundraiser_Appeal_edit.jpg
http://commons.wikimedia.org/wiki/File:Wikimedia_logo_family_complete-2012.svg
http://commons.wikimedia.org/wiki/File:Zentralstadion-Main_stand_crowd.JPG?uselang=fr
http://commons.wikimedia.org/wiki/File:ActiveWikipedians.PNG
http://commons.wikimedia.org/wiki/File:Translation_Barnstar.svg
http://meta.wikimedia.org/wiki/List_of_Wikipedias
http://reportcard.wmflabs.org/
http://www.makovsky.com/insights/articles/25-insights/articles/article/229-as-the-web-goes-mobile-healthcare-stands-still