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Wikipedia and Medicine

James Heilman

MD, CCFP(EM), Wikipedian

Wiki Project Med Foundation

All text is under a CC-BY-SA license

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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 article
An active volunteer ever since

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?

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Who here uses Wikipedia?

What language do you use it in?

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Is Wikipedia Read by Nearly Everyone?

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Some numbers

Most popular reference work, 5th most popular website globally (the first four being Google, Facebook, Youtube and Yahoo)
500 million people visit per month as of 2013 (roughly 21 billion page views)⁽⁷⁾
6 billion of these via mobile⁽⁷⁾

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Medical stats (2013)

2-3% of all pageviews for Wikipedia
Half views for English Wikipedia with 29,000 medical articles⁽¹⁾
Next most popular languages: Spanish and German

~5 billion pageview

~160,000 article

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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)
94% of medical students use Wikipedia
Many policy makers
20 to 60% of journalists

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Why do medical students use Wikipedia?

Easy access
Understandable
Consumer friendly

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Does Wikipedia Cover Nearly Everything?

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Size of the English version as of May 2014⁽⁹⁾

Largest reference work on the Internet
Equivalent to ~2000 volumes of the Encyclopedia Britannica
As of June 2014 ~32 million articles in 287 languages (4.5 million in English)
And continues to grow...

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Size of the medical content across all languages

Equivalent to ~127 volumes of the Encyclopedia Britannica

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Does Wikipedia Have a Huge Number of Editors?

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Who has edited Wikipedia?

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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
All volunteers working for free

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Medical numbers

1.1 M edits by 224,000 accounts.
English makes ~50%
274 human editors made more than 250 edits in 2013

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Who are they?

Survey of the top 271 medical editors in 2013 (117 responded, half En, half non En)
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

Enjoyable

Learning

Responsibility

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English Wikipedia only

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Why the falling number of editors?

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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^[21]
More research needed

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Reference, Reference, Reference

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WP:MEDRS

[10]

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Most used journals

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How we maintain quality

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Used by a lot of schools to detect “copy and paste” issues
Giving Wikipedia free access
Tool runs each new edit over a certain size through the software and flag concerns
Humans editors follow up

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We agree Wikipedia is not perfect!

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Future research:

Comparing students performance on a standardized exam

Wikipedia, Uptodate, Nothing

Looking at how Wikipedia is used by videoing people
Examine why people do not contribute

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Collaborations

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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
Have 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 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. 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 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

Problem: Those in the developing world have poor access to computers / the Internet
Silver lining: Cell phones widespread but data charges are expensive
Solution: Convince cell phone companies to allow Wikipedia access without data charges

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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350 million people

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Successes / Difficulties

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Working on content in nearly 100 languages (hoping to expand to all 287 languages and beyond)
more than 3.5 million words translated between 2012 and 2014
Some languages have improved content specifically for their audience

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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

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

Wikipedia Based Textbooks

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Medical Student Elective

Two semesters of students (5 and 7)
4 weeks 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 formating per MOS
Next course in Oct 2014

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Authorship

Can Wikipedia Advance your Career?

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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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So why get involved?

Wikipedia is what the world is reading
All people deserve access to high quality health information
Wikipedia is not as good as it should be because editor numbers are few
There is no money, there is no fame

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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
http://www.emeraldinsight.com/journals.htm?articleid=17108137&show=abstract
Nature 2005 comparison