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Wikipedia and Medicine

James Heilman

MD, CCFP(EM), Wikipedian

Sept. 7, 2017

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�Keynote Address�

Wikipedia and Medicine

James Heilman, MD, CCFP-EM

Wikipedian�University of British Columbia

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A bit about myself

Small town ER doc
Affiliated with UBC but long way away (~800 Km)
Became involved >10 years ago after coming across a poor quality medical article
An active volunteer ever since

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?

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Is Wikipedia Read by Nearly Everyone?

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Some numbers

5th most popular website globally (the first four being Google, Youtube, Facebook, and Baidu)
~500 million people visit per month via ~1.4 billion devices
15 billion page views
8 billion of these via mobile

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Medical views (2013)

3% of all pageviews for Wikipedia
Half of views are for English
Next most popular languages: Spanish and German
More than 60% of views by mobile

~7 billion pageview

~160,000 article

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Medical stats

50% to 100% of physicians use WP
35 to 70% of pharmacists admit to its use
94% of medical students use WP
20 to 60% of journalists
Frequent use by policy makers

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Why do 94% of medical students use Wikipedia?

Easy access
Understandable

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Does Wikipedia Cover Nearly Everything?

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Size of the English version as of Jan 2017⁽⁹⁾

Largest reference work on the Internet
Equivalent to ~2520 volumes of the Encyclopedia Britannica
~43 million articles in 295 languages (5.4 million in English

https://en.wikipedia.org/wiki/Wikipedia:Size_in_volumes

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Size of the medical content across all languages in 2013

Equivalent to ~127 volumes of the Encyclopedia Britannica

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Does Wikipedia Have a Huge Number of Editors?

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Wikipedia generally

80,000 people contribute >5 edits a month
12,000 people contribute more than 100 edits a month
Generally volunteers and working for free
Self governing communities

Anyone can edit but not everyone does!

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Medical editors (2016)

About the same from 2013
224,000 accounts made 1.1 M edits
Half in English

270 editors made more than 250 edits

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Who are they?

Half healthcare professionals
52% Masters, PhD or MD
33% Bachelor's degree
80% male, 10% female, 10% would rather not say

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Why do they edit?

Positive about Wikipedia

Enjoyable

Responsibility

To learning

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Is Wikipedia Reliable?

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Depends on definition and compared to what
There is no perfect source
Verifiability not Truth
As accurate as Britannica in 2005 and 2012
Internal peer review

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“I try to convince people to edit Wikipedia not just use it.”

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Public Perception of Reliability

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Better than UpToDate/Textbooks for Medical Students

Students given a quiz
Read either UpToDate, textbook, or Wikipedia
Retested
WP either results in similar or better results
WP had better search and interlinking
Residents rank WP highly and as one of their most visited sites

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Most used journals

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Wikipedia’s Peer Review

Article rating scale
Medicine has 63 FAs and 212 GAs

<1% of all articles
40% of top importance articles

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Bringing Wikipedia’s medical articles to FA followed by publication under the authors real names
First article published by Open Medicine
PLOS Medicine and Epilepsia also interested
Academic credit for Wikipedians

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Wiki Journal of Medicine

Open access journal
Started in March 2014
No associated costs
Has DOI and ISSN
15 articles published
Pubmed indexing in the works
Hosted on Wikiversity but maybe one day an independent sister project?

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Layers of quality assurance

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Used by a lot of schools to detect “copy and paste” issues
Giving us free access
Bot built that checks each new edit over a certain size since Aug 2014
Flags edits of concern for human follow up

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Collaborations

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Medical Translation Project

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3 Steps

Article improvement

Translation

Access

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Two article tracks

Full
Brought to GA/FA
2,500-10,000 words
Goal – 100 (33)

Short
3 to 4 paragraphs
Leads of English articles ~750 words
Goal – 1,000 (871)

Translation

100+ languages
>5 million words

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Why is this needed?

Every day thousands die for lack of health care and a major factor is poor access to information

More than half of people from Africa said that a friend or family member could have been saved if they’d had information in their own language
Many believe fluids should be withheld if their child has diarrhea

Issue: Little health care content exists in most 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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Ebola

The most used internet site in Liberia, Sierra Leone and Guinea for Ebola
Greater than CNN, CDC and WHO
Content available in more than 115 languages
100 M pageviews in 2014

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Improving Content

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Writing simple articles

Simple is Key
3 or 4 paragraphs
Every sentence referenced
Topics

Essential medicines
Diseases
Sanitation / engineering

Working with a number of medical schools to improve content

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Medical Student Elective

Six rounds of students (5, 7, 16, 15, 7, 22)
4 weeks working on just Wikipedia
Number of mainspace edits per student (29 and 25)
Many began work midway through the elective (we are tweaking the assignment)
Average number of days editing (7.8 and 7.6)
Struggled with consistently formating per the WP:MEDMOS
Pharmacy started project, others interested

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Translating Content

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Partnerships

Started in 2012 with TWB
All human translators (not machines)
Some languages have improved content specifically for their audience
Working with National Taiwan University College of Medicine

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Students find it useful

“Participating in this project changed my perspective on knowledge. In finding a balance between using precise professional terms and common words to explain a medical condition, I learned a lot. It has helped me to have better communication with my patients”

Aaron Huang

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Language Champions

Oriya (33 million native speakers)
Small community of 15 editors (5 plus edits)
Subas Chandra Rout
700+ articles translated

By Biswarup Ganguly on Commons

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Digital Last Mile

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The Digital Last Mile

Problem

Those in the developing world have poor access to computers / the Internet

Factors

Cell phones are widespread (6/7 people); however, data charges are expensive

Solutions

Cell phone companies give Wikipedia access without data charges
Download all content to your phone’s SD card

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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~300 million

People

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EN launched June 2015 in partnership with Wikimedia Switzerland/Kiwix
For Android (two steps for other systems)
All of Wikipedia’s anatomy, medical, pharmacology, and sanitation content
9 additional languages (Chinese, Persian, Arabic, Portuguese, German, Spanish, French, Japanese, Odia) and ZIMs in more
50 to 1,200Mb (big)
Updates every 6 months (>150K installs)
Travelling distribution systems

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Built in collaboration with WMCH/Kiwix
Includes diseases, anatomy, sanitation, physiology, dentistry, and medication content
1.2 Gb (4.2 Gb with videos)

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Offline EN App

Overall rating of 4.7

India 36.5%
Pakistan 8.2%
Philippines 8.0%
USA 7.1%
Nepal 4.2%
Bangladesh 2.8%
Egypt 2.0
Other 27%

“Brilliant. Wikimedia, by providing this very useful contents for free and in such a simple and easy to use app, you are serving humanity.”

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Internet-In-A-Box

Provides Wikipedia offline
Allows ~ 30 people to connect
Being installed / trialled in a number of locations
Allows both the viewership and downloading of the medical apps
Includes other resources

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Collaboration with HealthPhone and Osmosis

Developing health care videos

>230 by Osmosis
>million views last few months

Working on a partnership to give 8Gb microSD cards to all healthcare providers in India

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Infobox update

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World Health Organization

Improved all 414 essential medicines articles
WHO agreed to release the list under a CC BY SA 3.0 IGO license
Brought the article to featured list status
Was on the main page for a day in 2017

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There are MANY topics more important than Ebola

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Can you Edit?

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Questions?

James Heilman

jmh649@gmail.com

http://enwp.org/User:Doc James

“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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Editing (WP:MEDHOW)

Find excellent quality source
Hit the edit / edit source button
Put the ideas in your own words using easy to understand English
Format the reference
Explain what you have done in the edit summary

[edit]

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Sources (WP:MEDRS)

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Manual of style (WP:MEDMOS)

Naming and ordering of sections

References go after punctuation

We use very few capital letters

Do not use “inside net” urls

New WYSIWYG editor

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Who has edited Wikipedia?

Who has used Wikipedia?

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New Way

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WP:Visual Editor

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Adding pictures

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Old Way

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WP:MEDHOW

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Largest cancer charity in the UK
Hired a WiR in mid 2014, John Bryne
Improved pancreatic (FA), brain, and esophageal cancer articles
Donated 520+ images
Viewed 32+ million times
In at least 20 languages
275 people trained on editing

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Adding a summary of a meta analysis

Think newpaper headline
One or two sentences
Do not need publication type, author names, publishing source -> in the reference
Add it to the appropriate section / lead

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Magnesium sulfate may help those who are having an asthma attack who do not improve after other treatments.^[2]This benefit includes a reduced need for hospital admission.^[2]

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Writing simple articles

Disease related articles cover:

definition and symptoms
causes and diagnosis
prevention and treatment
epidemiology and history

All currently reviewed by me
Currently >800 ready for translation