Wikipedia: what is it and why it matters for healthcare

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Wikipedia: what is it and why it matters for healthcare
Lane Rasberry
Wikipedian in Residence, Consumer Reports
lrasberry@consumer.org
Lane Rasberry explains how Wikipedia is built and what the growing implications are for patients and doctors who use it


Imagine a world in which every single person on the planet is given free access to the sum

of all medical knowledge. This is what Wikipedians are aiming for.

While the Wikipedia community has continually worked to improve the quality of its

health content since the project’s founding in 2001, few of the encyclopedia articles meet the

quality standards that healthcare providers would expect before recommending that patients

consult it. All the content is written, edited, and maintained by volunteers, and anyone

visiting the website can click the “edit” button at the top of any article and instantly change

any aspect of the presented content without seeking permission, getting moderator approval,

or even registering an account.

Regardless of the dubious quality of Wikipedia, it persists as a popular source of health

information, even for doctors. As of January 2014 there were 26<thin>000 articles in

Wikipedia covering health topics including medical conditions, drugs, procedures, and

diseases. These collectively were requested and accessed 178<thin>000<thin>000 times that

month, representing an audience comparable in size to that of any other health publication[A:

unclear – audience of any other what? Large topic on Wikipedia? Health publication?

]. Wikipedia’s reach, irrespective of its quality, means that those who care about the body of

health information influencing public thought should consider the impact Wikipedia has as a

health publication. For those who do wish to engage with Wikipedia, it is an open, volunteer,

community project, and there are precedents for health partnerships.

Engaging with Wikipedia

Outside of Wikipedia’s own volunteer community initiatives, the first attempt to conduct

a health educational campaign by guiding the improvement of some Wikipedia articles began

in 2012 when the ABIM Foundation, a non-profit organization established by the American

Board of Internal Medicine, launched the Choosing Wisely campaign. Choosing Wisely

asked most major medical professional societies in the United States to share their concerns

about problems caused by unnecessary healthcare and to back them with citations from the

medical literature. Participants in the campaign proposed to disseminate both the concerns

themselves and the supporting citations, and the campaign was to target both healthcare

providers and recipients.

Consumer Reports, a non-profit consumer rights advocacy organization, joined the

campaign as a consumer communications partner. They recognized that Wikipedia was

a candidate platform for both sharing healthcare information backed by the best possible

medical sourcing, and getting community feedback. As a Wikipedia contributor to health

articles, I was approached by Consumer Reports to explore possibilities for integrating

Choosing Wisely content and their citations into existing Wikipedia articles. I suggested

nothing that was not already standard practice on Wikipedia—just that it would be good to

summarize and cite medical journals within Wikipedia health articles, and that the volunteer

community on Wikipedia desires collaboration with health organizations and experts, and

always has.

An example intervention in this project is the addition of information on indications for

medical imaging of the back into the Wikipedia article on low back pain, on the presumption

that this would be useful both to patients and healthcare providers.[1] Such interventions

were applied to 60 popular health articles that were already collectively getting 10 million

visitors every three months. The same audience is still going to these articles but finding the

campaign’s health information there.

Another attempt to leverage the reach of Wikipedia is the Cochrane Collaboration’s

granting of free subscriptions to the Cochrane Library to Wikipedians (the name given to

those editing the site) upon request. Their rationale was that since Wikipedians editing health

content prefer to cite review articles, and since Wikipedia’s health content is having some

public health impact as an educational resource, then it aligned with their mission to give

Wikipedians access to their publications. Cochrane Library publications are made available

to the public who want to read them in summary and to Wikipedia’s volunteer medical

researchers who would enjoy adapting them for this audience. As with Choosing Wisely, the

goal here is that health information on Wikipedia be improved with summaries and citations

to academic literature in order to reach the large audience using Wikipedia to inform their

health concerns.

Governance and regulation

As a crowdsourced project that accepts all volunteers and has no appointed roles or

designated leadership, Wikipedia operates based on its guidelines. Volunteer contributors

abide by those guidelines and teach them to newcomers.

Whenever a new user comes to Wikipedia, they typically try to make a change to an

article. If they do this correctly then they are thanked; if they do this incorrectly then they

are thanked, corrected, and presented with a guideline to help them conform next time. Upon

learning a guideline users encourage each other to monitor its correct application wherever in

Wikipedia they may go, and to instruct anyone who fails to meet it. Every Wikipedian patrols

articles, trains others, and collectively governs the encyclopedia.

An example of a Wikipedia guideline is Wikipedia:Verifiability.[2] This guideline dictates

that any content added to Wikipedia has to come from a published source that anyone else

can check, and that anyone adding a statement should also provide a citation referring to the

source. By placing the burden of accuracy upon the sources cited, Wikipedia circumvents

the need to have experts write the entirety of the encyclopedia and grants access to the

original sources with unprecedented exhaustiveness. Wikipedia’s quality control strategy is

to get enough volunteers to verify that for every statement on Wikipedia, the content added

to Wikipedia is an accurate reflection of the source from which it is derived and that the

source itself is reliable and worthy of citing. This policy is implemented in various ways,

including by systems for recruiting volunteers to monitor its enforcement. Everything done

on Wikipedia is checked by other people. There is a protocol available for whatever anyone

may do, and contributions to the encyclopedia not conforming to those protocols are queued

for processing to conform.

There are also subject matter guidelines and communities that oversee contributions

in any topical area. The forum with the most influence on health content is WikiProject

Medicine,[3] and the most relevant guidelines are MEDMOS,[4] the medical manual

of style, and MEDRS,[5] the medical guide to identifying reliable sources. MEDMOS

describes how source documents should be summarized on Wikipedia following medical

writing conventions. For determining what sources ought to be cited, MEDRS dictates that

contributors sharing health information should cite secondary sources and especially review

articles in preference to anything else. The community of editors contributing to health

content trains all newcomers to the project how to differentiate primary research from a

literature review, and to start with a source and summarize it rather than starting with an

agenda and bolstering it. Especially in medicine, Wikipedia prefers academic publishing

to all else for sourcing. Whenever there is consensus in the literature Wikipedia has bias to

present as incorrect any position in opposition to that consensus.[A: this is pretty strongly

worded. Do you feel this is an accurate description of the editorial process?] While all

of Wikipedia seeks to summarize and cite “the sum of all human knowledge” in its

articles for its audience,[A: can we reword this general description of Wikipedia’s MO?

Ambiguity around “summarize and cite the entirety of academic publishing” – really?

] (“Imagine a world in which every single person on the planet is given free access to the

sum of all human knowledge” – founder Jimbo Wales. Yes, Wikipedia is trying to make

a bibliography of all academic publishing, but “sum of all human knowledge” is the

established way to describe the MO.)health editors are especially committed to accurately

representing the sources because they feel that the information they publish has a public

health impact.

Reach and impact

Clearly, Wikipedia’s health content matters more if it influences large numbers of people

in making healthcare decisions, but there is little existing research on how Wikipedia’s health

content might affect people’s decisions. However, Wikipedia may be having an analogous

effect if one imagines that readers using health information taken from Wikipedia in a

comparable way to health information from other sources online.[edit OK?] (Yes) Much

more certain than the actual impact of Wikipedia’s health information are monthly reports of

the number of visitors to Wikipedia health content.

At some point prior to 2007 (when it secured its top ten Alexa Internet website ranking

for traffic) Wikipedia became wide enough in scope and popular enough such that search

engines including Google began to respond to queries with a recommendation among the

top returned results that the user should visit Wikipedia. This has persisted since—and

now those who use search engines to seek health information find and visit Wikipedia as a

default recommendation. If Wikipedia’s popularity persists, and if the public’s consultation

of Wikipedia is influencing health choices they make, and if these choices are having an

impact on public health, then stakeholders in public health are stakeholders in the quality of

Wikipedia health content to the extent that Wikipedia affects their demographic of interest.

Implications

Health content on Wikipedia is more requested and accessed than comparable information

from most other sources. As a community managed platform, anyone who criticizes the

quality of content on Wikipedia is welcome to improve any of it. Anyone who already wishes

to improve health education to the public may find Wikipedia to be a worthy media partner

that even a single individual could leverage to get a large audience.

Anyone wishing to learn more about health content on Wikipedia can read the guides at

WikiProject Medicine[3] or join discussions on the forum there. Volunteer coordinated free

training is available online and off. As always, anyone who wishes to edit any Wikipedia

article is welcome to do so at any time by clicking “edit” at the top of the article and making

changes as they like.

I have read and understood the BMJ Group policy on declaration of interests and have no

relevant interests to declare.

I am employed only by Consumer Reports. I have no other financial interest to declare, [OK?

Or declare if any]

Provenance and peer review: Commissioned; not externally peer reviewed.

• Wikipedia. Low back pain. https://en.wikipedia.org/wiki/Low_back_pain

•

• Wikipedia. Wikipedia:verifiability. http://en.wikipedia.org/wiki/

Wikipedia:Verifiability.

• Wikipedia. Wikipedia:WikiProject medicine. http://en.wikipedia.org/wiki/

Wikipedia:WikiProject_Medicine

• Wikipedia. Wikipedia:manual of style/medicine-related articles. http://

en.wikipedia.org/wiki/Wikipedia:MEDMOS.

• Wikipedia. Wikipedia:identifying reliable sources (medicine). http://en.wikipedia.org/

wiki/Wikipedia:MEDRS.

Cite this as: BMJ 2014;348:g2478