When the Ebola pandemic erupted in West Africa in 2014, the English-language Wikipedia articles on Ebola were overhauled and versions were created or updated in more than 100 other languages. These pages would go on to be viewed at least 89 million times in 2014, and were the most used online sources for Ebola information in each of the four most affected countries. The work done by these authors, editors, and translators was crucial to educating the public on this devastating disease.
Medicine changes rapidly. Wikipedia, the world’s most viewed medical resource, should, too. Unfortunately, it sometimes lags behind. As we write this, pages on Ebola in African languages spoken in countries affected by the disease, such as Hausa and Fula, have either not been updated since the crisis in 2014 or are rudimentary with under 220 words.
We strongly believe that the medical community has a responsibility to keep this online encyclopedia up to date. It owes it to the people who turn to Wikipedia 4.9 billion times every year for medical information, many of whom live in low- to middle-income countries with sparse access to medical information. We follow through on this belief with action: each of us has been writing and updating Wikipedia articles on medicine and health for several years. Unfortunately, there is little incentive for busy biomedical and research professionals to spend their time editing, translating, and updating these pages.
Wikipedia is where established scientific knowledge has the ability to reach those who need it most. Indeed, it was estimated to be more than 1,500 times more cost effective than traditional ways of spreading information, such as presenting at academic conferences. It is a source of health care information for half to nearly three-quarters of physicians and more than 90 percent of medical students.
But Wikipedia is particularly important in low- to middle-income countries, where it offers a way around slow and expensive Internet access. In many of these countries, Internet providers offer free data when individuals access Wikipedia. In addition, one can download offline packages or Wikipedia based medical apps to their phone for later use. Furthermore, fully offline distribution systems are currently being rolled out.
Despite the importance of Wikipedia’s medical pages, the core editor community numbers less than 300 and has declined slightly since 2010. This small community creates, monitors, translates, and updates 30,000 English articles, with similar communities maintaining another 164,000 pages across hundreds of other languages. The size of this undertaking means that essential medical pages are either incomplete or suffer from readability issues. These issues are compounded for non-English pages, and translating them is a major bottleneck to equal access to medical information.
Having access to up-to-date medical information in a language you understand can be life-saving. Take the case of stillbirths, 7,000 of which occur every day around the world, 98 percent of them in low- to middle-income countries. Following a stillbirth, it is likely that the first online source of information for a woman, her partner, or her family would be Wikipedia. However, when we examined its stillbirth pages in 2016, we found that even the English-language page was missing key information. Major preventable causes of stillbirth, like malaria and syphilis, weren’t mentioned. Unsurprisingly, the stillbirth pages in other languages were far less detailed.
The work of scientists and medical professionals is varied, but the praise and recognition they receive is not. It is disproportionately centered on producing novel results and publishing them in high-profile journals. This work is undeniably important, but so is the work of medical professionals who give their time to public education projects such as editing and updating Wikipedia’s medical pages. This work should be accounted for when professors apply for tenure and grants, or students apply for residency or fellowship programs.
To provide incentives for work that falls outside the scope of traditional publishing, we need to change the way scientists build their reputations and advance their careers. We don’t have simple answers to what kind of incentive structure would best get people to share their knowledge. However, it needs to be tied to the reputations of nurses, doctors, scientists, and other health professionals, just like conducting studies and writing high-profile publications. We do know that any system or metric that hopes to become an accepted standard would need everyone’s support to be successful — from hospital and university human resources departments to funding agencies and committees that look at promotions and tenure.
Recognition isn’t the only thing holding back Wikipedia’s medical community from growing. An overly complex editing interface and a sometimes unwelcoming and predominantly male community are also challenges. But we believe that increased acknowledgement will overcome the biggest obstacle.
With or without formal recognition, improving free health information is the right thing to do. Nevertheless, our hope is that sharing biomedical discoveries in real time with peers and the public on Wikipedia and beyond will one day garner greater academic acknowledgement. You can learn how to contribute to WikiProject Medicine and follow this work in real time in a project on ResearchGate.
Saving lives is what physicians and biomedical researchers aim to do. Sharing our knowledge freely is one way to achieve this.
Gwinyai Masukume, Lisa Kipersztok, Thomas Shafee, Diptanshu Das, and James Heilman are physicians or researchers on the editorial board of the WikiJournal of Medicine and contribute regularly to Wikipedia articles. They acknowledge the many very helpful discussions, over the years, with fellow Wikipedians and collaborators.
Excellent column! As head of Communications for the US National Cancer Institute, I am responsible for overseeing provider and patient information on cancer.gov, https://www.cancer.gov/publications/pdq. I would welcome an opportunity to hear your thoughts regarding the value of the information we provide.
I have used NCI extensively to update Wikipedia’s cancer related content. It is an excellent source. Would be interested in collaborating further. I will email you.
I was born in Viet Nam, a poor country so used to treat ill by herb. Now I live in America but sometime I have to use herb because no medicine for: My friend is a MD but she had to eat Purslane to treat for her pain leg: The pain bother her for few years, she ate this wild vegetable at night before, next morning she having a good leg. I treated for myself and a lot friends of mine who have sore knee, and restless leg. You never know Purslane treats for mental: Hyperactivity, Attention Deficit Disorder, Alzheimer’s Disease, Autism, Bipolar Disorder, Schizophrenia, Depression.
One time I found in Wikipedia: Purslane is only one vegetable named in Bible, now I can’t find it!
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This project could and possibly should be adopted by academic medicine worldwide. Academic credit could be given for work on the project and the structure of universities and medical schools could help with sustainability. Physicians involved in active patient care roles do not really have sufficient time to work on something like this, in my opinion.
UCSF already give credit for working on Wikipedia https://www.ucsf.edu/news/2013/09/109201/ucsf-first-us-medical-school-offer-credit-wikipedia-articles
Half of the core community working on Wikipedia’s medical content are physicians.
Here is the refs for that last statement
Wikipedia by its very nature cannot be trusted. It can be changed by anyone. You cannot crowd source medical advice, you should be ashamed to even suggest it.
Ya, I’m not sure I can get on-board with this. Perhaps if they payed a physician to update it that would be doable. Unlike updating the history of King George, posting medical stuff can get you in potential legal trouble if inaccurate information is placed and someone can convince a lawyer you were responsible for a person drinking sulfuric acid for their dyspepsia.
Health care advocates should give their attention to wherever the largest and most relevant audience is seeking health information. I think the language in this article is appropriate. To the extent that audiences are seeking health info in Wikipedia, anyone providing health information really should be engaged there.
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