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

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

I initially became involved with Wikipedia in 2007/2008 after coming across an article full of errors during a night shift. While reading it I noticed a little edit button and when I hit this button I realized that I could fix these errors.

I have been trying to fix the Internet ever since. So involved that my wife has begun referring to Wikipedia as my mistress. I on the other hand prefer to call her my first child.

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Is Wikipedia Read by Nearly Everyone?

So lets begin, with a show of hands how many people here have read Wikipedia?

Have many have edited Wikipedia?

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

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

With respect to medicine, my area of interest…

Wikipedia is was used by 94% of students while studying medicine.

A survey of clinical docs found that 90% looked up clinical info on WP, and the 10% who denied usage, stated they used it for background information, thus they were using it too.

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.

So why is it so extensively used? 1) easy to access, 2) easy to understand 3) user friendly 4) quality while not perfect is often good enough

How does Wikipedia compare to other site? By unique visitors as well as pageviews it is the most viewed.

This means Wikipedia's medical content is more consulted than the NHS, WHO, UpToDate and WebMD combined and slightly more viewed than the NIH.

Does Wikipedia Cover Nearly Everything?

Of those who have read Wikipedia did it answer the question you were looking up?

Size of the medical content across all languages

  • Equivalent to ~126.9 volumes of the Encyclopedia Britannica

If one was to have print out every article on English Wikipedia in 2010 this is how much space it would take on a book shelf. And Wikipedia has a quarter since then. As well content exist in 285 other languages.

Does Wikipedia Have a Huge Number of Editors?

Yes and no

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

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

English Wikipedia only

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

Why do they edit?

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

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Is Wikipedia Peer Reviewed?

Featured articles / good articles

  • Must undergo semi formal peer review
  • Medicine has 58 FAs and 166 GAs (<1%)
  • More formal peer review and author credit in collaboration with journals

To obtain Wikipedia's two highest ratings articles must...

Collaborations

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

Health Information for All in a Language of their Choice

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My main efforts over the last few years have been the use of Wikipedia as a platform to develop "Health Information for All in a Language of their Choice"

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

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)

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

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.

I will put forwards the argument that Wikipedia is the only viable way to achieve this goal.

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

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.

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.

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.

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

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
  • 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

  • No attribution, not under the same license
  • At least 44 of them
  • 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
  • Placed on the talk page of articles
  • Link to TRIP clicked on about 100x per month

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

Mount Sinai Medical Student Club

  • 28 members
  • couple of meetings to edit medical content

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

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

Is Wikipedia reliable?

How many of you have edited Wikipedia?

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

How many of you have edited Wikipedia?

Reference, Reference, Reference

WP:MEDRS

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This is an example of a well referenced article. You will notice that each sentence is followed by a reference

Most commonly used journals

  • Lancet
  • NEJM
  • Nature
  • BMJ
  • JAMA
  • Science
  • Cochrane

Further research:

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

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.” 

References

Wikimania 2014 - Google Slides