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Wikipedia: what is it and why it matters for healthcare

bluerasberry Apr 17th, 2014 160 Never
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  1. This preprint may vary from the final live version published at BMJ. Thank you for reviewing this version. BMJ is an excellent medical journals which publishes many features accessible and interesting to layperson audiences. Search for this paper online and subscribe to BMJ to read the final version.
  2.  
  3. Wikipedia: what is it and why it matters for healthcare
  4. Lane Rasberry
  5. Wikipedian in Residence, Consumer Reports
  6. lrasberry@consumer.org
  7. Lane Rasberry explains how Wikipedia is built and what the growing implications are for patients and doctors who use it
  8.  
  9.  
  10. Imagine a world in which every single person on the planet is given free access to the sum
  11.  
  12. of all medical knowledge. This is what Wikipedians are aiming for.
  13.  
  14. While the Wikipedia community has continually worked to improve the quality of its
  15.  
  16. health content since the project’s founding in 2001, few of the encyclopedia articles meet the
  17.  
  18. quality standards that healthcare providers would expect before recommending that patients
  19.  
  20. consult it. All the content is written, edited, and maintained by volunteers, and anyone
  21.  
  22. visiting the website can click the “edit” button at the top of any article and instantly change
  23.  
  24. any aspect of the presented content without seeking permission, getting moderator approval,
  25.  
  26. or even registering an account.
  27.  
  28. Regardless of the dubious quality of Wikipedia, it persists as a popular source of health
  29.  
  30. information, even for doctors. As of January 2014 there were 26<thin>000 articles in
  31.  
  32. Wikipedia covering health topics including medical conditions, drugs, procedures, and
  33.  
  34. diseases. These collectively were requested and accessed 178<thin>000<thin>000 times that
  35.  
  36. month, representing an audience comparable in size to that of any other health publication[A:
  37.  
  38. unclear – audience of any other what? Large topic on Wikipedia? Health publication?
  39.  
  40. ]. Wikipedia’s reach, irrespective of its quality, means that those who care about the body of
  41.  
  42. health information influencing public thought should consider the impact Wikipedia has as a
  43.  
  44. health publication. For those who do wish to engage with Wikipedia, it is an open, volunteer,
  45.  
  46. community project, and there are precedents for health partnerships.
  47.  
  48. Engaging with Wikipedia
  49.  
  50. Outside of Wikipedia’s own volunteer community initiatives, the first attempt to conduct
  51.  
  52. a health educational campaign by guiding the improvement of some Wikipedia articles began
  53.  
  54. in 2012 when the ABIM Foundation, a non-profit organization established by the American
  55.  
  56. Board of Internal Medicine, launched the Choosing Wisely campaign. Choosing Wisely
  57.  
  58. asked most major medical professional societies in the United States to share their concerns
  59.  
  60. about problems caused by unnecessary healthcare and to back them with citations from the
  61.  
  62. medical literature. Participants in the campaign proposed to disseminate both the concerns
  63.  
  64. themselves and the supporting citations, and the campaign was to target both healthcare
  65.  
  66. providers and recipients.
  67.  
  68. Consumer Reports, a non-profit consumer rights advocacy organization, joined the
  69.  
  70. campaign as a consumer communications partner. They recognized that Wikipedia was
  71.  
  72. a candidate platform for both sharing healthcare information backed by the best possible
  73.  
  74. medical sourcing, and getting community feedback. As a Wikipedia contributor to health
  75.  
  76. articles, I was approached by Consumer Reports to explore possibilities for integrating
  77.  
  78. Choosing Wisely content and their citations into existing Wikipedia articles. I suggested
  79.  
  80. nothing that was not already standard practice on Wikipedia—just that it would be good to
  81.  
  82. summarize and cite medical journals within Wikipedia health articles, and that the volunteer
  83.  
  84. community on Wikipedia desires collaboration with health organizations and experts, and
  85.  
  86. always has.
  87.  
  88. An example intervention in this project is the addition of information on indications for
  89.  
  90. medical imaging of the back into the Wikipedia article on low back pain, on the presumption
  91.  
  92. that this would be useful both to patients and healthcare providers.[1] Such interventions
  93.  
  94. were applied to 60 popular health articles that were already collectively getting 10 million
  95.  
  96. visitors every three months. The same audience is still going to these articles but finding the
  97.  
  98. campaign’s health information there.
  99.  
  100. Another attempt to leverage the reach of Wikipedia is the Cochrane Collaboration’s
  101.  
  102. granting of free subscriptions to the Cochrane Library to Wikipedians (the name given to
  103.  
  104. those editing the site) upon request. Their rationale was that since Wikipedians editing health
  105.  
  106. content prefer to cite review articles, and since Wikipedia’s health content is having some
  107.  
  108. public health impact as an educational resource, then it aligned with their mission to give
  109.  
  110. Wikipedians access to their publications. Cochrane Library publications are made available
  111.  
  112. to the public who want to read them in summary and to Wikipedia’s volunteer medical
  113.  
  114. researchers who would enjoy adapting them for this audience. As with Choosing Wisely, the
  115.  
  116. goal here is that health information on Wikipedia be improved with summaries and citations
  117.  
  118. to academic literature in order to reach the large audience using Wikipedia to inform their
  119.  
  120. health concerns.
  121.  
  122. Governance and regulation
  123.  
  124. As a crowdsourced project that accepts all volunteers and has no appointed roles or
  125.  
  126. designated leadership, Wikipedia operates based on its guidelines. Volunteer contributors
  127.  
  128. abide by those guidelines and teach them to newcomers.
  129.  
  130. Whenever a new user comes to Wikipedia, they typically try to make a change to an
  131.  
  132. article. If they do this correctly then they are thanked; if they do this incorrectly then they
  133.  
  134. are thanked, corrected, and presented with a guideline to help them conform next time. Upon
  135.  
  136. learning a guideline users encourage each other to monitor its correct application wherever in
  137.  
  138. Wikipedia they may go, and to instruct anyone who fails to meet it. Every Wikipedian patrols
  139.  
  140. articles, trains others, and collectively governs the encyclopedia.
  141.  
  142. An example of a Wikipedia guideline is Wikipedia:Verifiability.[2] This guideline dictates
  143.  
  144. that any content added to Wikipedia has to come from a published source that anyone else
  145.  
  146. can check, and that anyone adding a statement should also provide a citation referring to the
  147.  
  148. source. By placing the burden of accuracy upon the sources cited, Wikipedia circumvents
  149.  
  150. the need to have experts write the entirety of the encyclopedia and grants access to the
  151.  
  152. original sources with unprecedented exhaustiveness. Wikipedia’s quality control strategy is
  153.  
  154. to get enough volunteers to verify that for every statement on Wikipedia, the content added
  155.  
  156. to Wikipedia is an accurate reflection of the source from which it is derived and that the
  157.  
  158. source itself is reliable and worthy of citing. This policy is implemented in various ways,
  159.  
  160. including by systems for recruiting volunteers to monitor its enforcement. Everything done
  161.  
  162. on Wikipedia is checked by other people. There is a protocol available for whatever anyone
  163.  
  164. may do, and contributions to the encyclopedia not conforming to those protocols are queued
  165.  
  166. for processing to conform.
  167.  
  168. There are also subject matter guidelines and communities that oversee contributions
  169.  
  170. in any topical area. The forum with the most influence on health content is WikiProject
  171.  
  172. Medicine,[3] and the most relevant guidelines are MEDMOS,[4] the medical manual
  173.  
  174. of style, and MEDRS,[5] the medical guide to identifying reliable sources. MEDMOS
  175.  
  176. describes how source documents should be summarized on Wikipedia following medical
  177.  
  178. writing conventions. For determining what sources ought to be cited, MEDRS dictates that
  179.  
  180. contributors sharing health information should cite secondary sources and especially review
  181.  
  182. articles in preference to anything else. The community of editors contributing to health
  183.  
  184. content trains all newcomers to the project how to differentiate primary research from a
  185.  
  186. literature review, and to start with a source and summarize it rather than starting with an
  187.  
  188. agenda and bolstering it. Especially in medicine, Wikipedia prefers academic publishing
  189.  
  190. to all else for sourcing. Whenever there is consensus in the literature Wikipedia has bias to
  191.  
  192. present as incorrect any position in opposition to that consensus.[A: this is pretty strongly
  193.  
  194. worded. Do you feel this is an accurate description of the editorial process?] While all
  195.  
  196. of Wikipedia seeks to summarize and cite “the sum of all human knowledge” in its
  197.  
  198. articles for its audience,[A: can we reword this general description of Wikipedia’s MO?
  199.  
  200. Ambiguity around “summarize and cite the entirety of academic publishing” – really?
  201.  
  202. ] (“Imagine a world in which every single person on the planet is given free access to the
  203.  
  204. sum of all human knowledge” – founder Jimbo Wales. Yes, Wikipedia is trying to make
  205.  
  206. a bibliography of all academic publishing, but “sum of all human knowledge” is the
  207.  
  208. established way to describe the MO.)health editors are especially committed to accurately
  209.  
  210. representing the sources because they feel that the information they publish has a public
  211.  
  212. health impact.
  213.  
  214. Reach and impact
  215.  
  216. Clearly, Wikipedia’s health content matters more if it influences large numbers of people
  217.  
  218. in making healthcare decisions, but there is little existing research on how Wikipedia’s health
  219.  
  220. content might affect people’s decisions. However, Wikipedia may be having an analogous
  221.  
  222. effect if one imagines that readers using health information taken from Wikipedia in a
  223.  
  224. comparable way to health information from other sources online.[edit OK?] (Yes) Much
  225.  
  226. more certain than the actual impact of Wikipedia’s health information are monthly reports of
  227.  
  228. the number of visitors to Wikipedia health content.
  229.  
  230. At some point prior to 2007 (when it secured its top ten Alexa Internet website ranking
  231.  
  232. for traffic) Wikipedia became wide enough in scope and popular enough such that search
  233.  
  234. engines including Google began to respond to queries with a recommendation among the
  235.  
  236. top returned results that the user should visit Wikipedia. This has persisted since—and
  237.  
  238. now those who use search engines to seek health information find and visit Wikipedia as a
  239.  
  240. default recommendation. If Wikipedia’s popularity persists, and if the public’s consultation
  241.  
  242. of Wikipedia is influencing health choices they make, and if these choices are having an
  243.  
  244. impact on public health, then stakeholders in public health are stakeholders in the quality of
  245.  
  246. Wikipedia health content to the extent that Wikipedia affects their demographic of interest.
  247.  
  248. Implications
  249.  
  250. Health content on Wikipedia is more requested and accessed than comparable information
  251.  
  252. from most other sources. As a community managed platform, anyone who criticizes the
  253.  
  254. quality of content on Wikipedia is welcome to improve any of it. Anyone who already wishes
  255.  
  256. to improve health education to the public may find Wikipedia to be a worthy media partner
  257.  
  258. that even a single individual could leverage to get a large audience.
  259.  
  260. Anyone wishing to learn more about health content on Wikipedia can read the guides at
  261.  
  262. WikiProject Medicine[3] or join discussions on the forum there. Volunteer coordinated free
  263.  
  264. training is available online and off. As always, anyone who wishes to edit any Wikipedia
  265.  
  266. article is welcome to do so at any time by clicking “edit” at the top of the article and making
  267.  
  268. changes as they like.
  269.  
  270. I have read and understood the BMJ Group policy on declaration of interests and have no
  271.  
  272. relevant interests to declare.
  273.  
  274. I am employed only by Consumer Reports. I have no other financial interest to declare, [OK?
  275.  
  276. Or declare if any]
  277.  
  278. Provenance and peer review: Commissioned; not externally peer reviewed.
  279.  
  280. • Wikipedia. Low back pain. https://en.wikipedia.org/wiki/Low_back_pain
  281.  
  282.  
  283. • Wikipedia. Wikipedia:verifiability. http://en.wikipedia.org/wiki/
  284.  
  285. Wikipedia:Verifiability.
  286.  
  287. • Wikipedia. Wikipedia:WikiProject medicine. http://en.wikipedia.org/wiki/
  288.  
  289. Wikipedia:WikiProject_Medicine
  290.  
  291. • Wikipedia. Wikipedia:manual of style/medicine-related articles. http://
  292.  
  293. en.wikipedia.org/wiki/Wikipedia:MEDMOS.
  294.  
  295. • Wikipedia. Wikipedia:identifying reliable sources (medicine). http://en.wikipedia.org/
  296.  
  297. wiki/Wikipedia:MEDRS.
  298.  
  299. Cite this as: BMJ 2014;348:g2478
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