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Op-ed

Who edits health-related content on Wikipedia and why?

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By Dr. Henry W. W. Potts
Wikipedia is one of the first resources for individuals looking for medical information.

Wikipedia is one of the most used sources of health information online, for healthcare professionals and students, as well as the general public. The value of that information to users, and the dangers from incorrect information, are greater than for many other topic areas and concerns over the accuracy of Wikipedia’s health-related content remain (see [1] for a recent study with a broadly positive conclusion). However, researchers in consumer health informatics have long recognised that even accurate online health information can be better or worse designed, reflect different possible perspectives, and still generate problems as well as solutions.[2]

This led to a new research study, published 3 December 2014 in the Journal of Medical Internet Research, on the motivations of contributors to health-related articles on Wikipedia.[3] The study was carried out by Nuša Farič, User:Hydra Rain, and myself, User:Bondegezou, and was inspired by my own 9 years on Wikipedia. We randomly selected a set of health-related articles (listed in the paper) and then invited recent editors of those articles to complete a questionnaire (32 respondents from 11 countries) and take part in interviews (16 respondents). We would like to again thank all our participants for their, often enthusiastic, cooperation!

We found that around half of the editors (15/32) are qualified medics or other healthcare professionals, providing reassurance about the reliability of content. A smaller number of editors had specific health problems themselves that motivated their editing. Editors were predominantly men (31/32), a familiar finding, and ranged in age from 12 to 59. One of our interviewees is Dr James Heilman, User:Doc James, who has also been doing research on Wikipedia. In work presented at Wikimania 2014, he similarly found that about half of frequent editors of medical topics are healthcare professionals, but also that the core community only numbers about 300 individuals and seems to be shrinking over time.

Individuals edited health-related content on Wikipedia because they wanted to improve content; they find editing Wikipedia is a good way to learn about topics themselves; they feel a sense of responsibility – often a professional responsibility – to provide good quality health information; they enjoy editing Wikipedia; and they think highly of the value of Wikipedia. However, some editors also reported being put off editing by hostility from others on the site.

Where next for the field? We know Wikipedia health content is heavily accessed, but we know much less about who is using it for what purposes, what readers think of the material, and what impact it has on their decision-making. (Research on users is much harder to carry out than research on content or on editors!) Cancer Research UK have recently employed a Wikipedian-in-residence, John Byrne. John is User:Johnbod, but working as User:Wiki CRUK John for this project, which was funded by the Wellcome Trust; see Wikipedia:WikiProject CRUK for more. We’re helping John to research these questions.

Answers will help us find the right style for Wikipedia articles on health. WikiProject Medicine have already been evolving the manual of style for medical articles (WT:MEDMOS) to make the language more accessible: see Wikipedia talk:Manual of Style/Medicine-related articles#A change to some of our headings as an example. Although getting all articles to match MEDMOS is another challenge!

We would also like to see more people involved in editing. Various outreach projects, including WikiProject CRUK, are seeking to engage medics and health researchers. I also think Wikipedia’s health content would benefit from more diverse voices in this area. What does it mean to have a patient perspective when editing? In earlier work,[4] I found only a few examples of patients editing material about their conditions in most articles from another random sample. However, three articles (autism, Asperger's syndrome, chronic fatigue syndrome) showed a very different pattern with considerable editing by patients and others affected by those conditions. There are plenty of further research questions here to keep us busy.

The views expressed in this op-ed are those of the author only; responses and critical commentary are invited in the comments section. The Signpost welcomes proposals for op-eds at our opinion desk.

Notes

  1. ^ Temple, Norman; Joy Fraser (March 2014). "How Accurate Are Wikipedia Articles in Health, Nutrition, and Medicine?". Canadian Journal of Information and Library Science. 38 (1): 37–52. doi:10.1353/ils.2014.0000. S2CID 60695239.
  2. ^ Potts, Henry; Jeremy Wyatt (2002-03-31). "Survey of Doctors' Experience of Patients Using the Internet". Journal of Medical Internet Research. 4 (1): e5. doi:10.2196/jmir.4.1.e5. ISSN 1438-8871. PMID 11956037.
  3. ^ Farič, Nuša; Henry Potts (2014-12-03). "Motivations for Contributing to Health-Related Articles on Wikipedia: An Interview Study". Journal of Medical Internet Research. 16 (12): e260. doi:10.2196/jmir.3569. ISSN 1438-8871. PMC 4275502. PMID 25498308.
  4. ^ Potts H (2009), “Design rules and Web 2.0: mismatched models of how people use the Internet for healthcare”. Presentation at Third LifeGuide Workshop, London, UK
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  • It is sad to see how WP:MEDRS is used/misused at the borders of medicine and agriculture. For example at Organic food, where MEDRS is used to shoot down everything what is positive as being a health claim. In that example even sources provided by agricultural colleges/universities are shot down as not in accordance to MEDRS, making the articles more negative than available source should warrant. The discussions are already endless but the group supporting MEDRS is at least very loud. The Banner talk 21:53, 6 December 2014 (UTC)[reply]
The Banner Many people say that WP:MEDRS is not fair because it excludes many papers but I hope that at least you feel that the policy is consistent and predictable. There is not consensus about what kinds of sources Wikipedia ought to accept, but I feel that there is usually consensus on whether a source meets MEDRS. Blue Rasberry (talk) 16:25, 8 December 2014 (UTC)[reply]
I have no doubt that MEDRS is fair for 100% medical articles like diabetes mellitus. But I have the feeling that it is misused against articles just slightly related to the medical world. They claim that Organic food in in their remit so it should comply to their MEDRS-rules. The fact that organic food has more to do with agriculture is ignored with the claim to prevalence of MEDRS. Very frustrating. The Banner talk 20:58, 8 December 2014 (UTC)[reply]
The Banner MEDRS is not supposed to work that way, and is only supposed to cover health claims. For example, sociological issues related to diabetes are out of the scope of MEDRS, and organic farming practices are likewise out of scope. Discussions of purported health benefits of eating organic food are in the scope of MEDRS. If someone tries to tell you about MEDRS and they are not talking about a human health issue, typically the sort of issue which a doctor might speak about with a patient regarding that person's health, then please go to WikiProject Medicine and ask for help. In organic food there are other controversies about WP:RS, but I hope that the controversy about WP:MEDRS is confined only to human health issues and completely separate from agriculture. Blue Rasberry (talk) 17:45, 10 December 2014 (UTC)[reply]
It definitely does! Even the addition of a difference in chemical composition is shot down as being a health claim. The Banner talk 21:52, 10 December 2014 (UTC)[reply]
  • In my case, its tough to find a reliable source for any type of academic (that includes various physicians) I have written many articles on ophthalmologists and optometrists, bringing the amount of American physicians in those fields to over a half of what it initially was. However, majority of my articles on them are stubs for one reason: The most reliable source that used for any academic is GS. Sure, sometimes I do find an article in Chicago Tribune or The New York Times which features either his research or his death. I do sometimes rely on scientific journals but the problem is is that Wikipedia view some of it as OR. I don't like articles that carry OR but sometimes a specific research is listed only in scientific publication which in turn is authored by a current physician. I do however hope, that in a near future Wikipedia will allow scientific journals being used as reliable sources (at least if their GS is adequate), because writing a biography on a specific scientist without journals is quite difficult and academics don't appear in the news a whole lot from what I seen.--Mishae (talk) 00:10, 7 December 2014 (UTC)[reply]
  • As far as editing goes, I personally edit articles on physicians not because of my health (otherwise since I have Cerebral Palsy I would have probably written an article on a foot doctor), but because the amount of articles on physicians (let alone academics in general) on Wikipedia is quite low. To be honest, English Wikipedia have the most academics period. Another thing to mention is that I never edited an article on autism but I did wrote a hefty amount of articles on disabled athletes (at least 2 of them are also known for academic achievements). I'm also not a doctor of any kind, but I do like to write sometimes about them because I receive Journal of Bone and Joint Surgery.--Mishae (talk) 00:20, 7 December 2014 (UTC)[reply]
  • For many years I have asked a question about registered health professionals (including doctors and nurses etc) viewing wikipedia's health related articles and never got a satisfactory answer. It they were to spot an error or omission in the article and do not correct or improve the article could they be sanctioned by their regulatory body? If a patient used the advice and was harmed as a result would the health professional be liable?— Rod talk 09:56, 7 December 2014 (UTC)[reply]
    • @Rodw: Not necessarily. Majority of people who look for a specific health related information chose WebMD or PudMed if they want to learn about specific ailment. Wikipedia is just an encyclopedia based on popular science. In other words, Wikipedia is not a collection of various bios on various doctors and therefore shouldn't be viewed as such. However, if I will want to learn about specific doctor that had a plethora of research papers, I will most definitely read it her!--Mishae (talk) 19:44, 7 December 2014 (UTC)[reply]
      • I was thinking about information about conditions rather than biographies. I would suggest that many non health care professionals would not know what WebMD or PubMed are and would do a general Google search where wp articles are generally listed above peer reviewed papers.— Rod talk 19:55, 7 December 2014 (UTC)[reply]
        • @Rodw: Well, my mom for example is not health care professional but she looks for her symptoms on WebMD. Most non-health professionals know at least about WebMD because its commercials are aired daily on any TV channel. People who watch their favorite ABC show will end up stumbling on WebMD adds at least in my state of Minnesota. It might be different for other states though where people have ABC or WCCO as their cable channels.--Mishae (talk) 23:26, 7 December 2014 (UTC)[reply]
          • @Mishae: That is a very US centric view. Here in the UK I've never seen an advert for WebMD & I've never seen ABC and never even heard of WCCO. The readership of wikipedia is worldwide.— Rod talk 07:54, 8 December 2014 (UTC)[reply]
@Rodw: Yes, but keep in mind that Wikipedia was founded in Florida USA. So, there is more US editors on English Wikipedia then there is Brits and Scots combined.--Mishae (talk) 16:13, 8 December 2014 (UTC)[reply]
Rodw There was no answer to this question until earlier this year. See the mention of this in WikiProject Medicine. More discussion is elsewhere - I cannot find it now. The FDA in the United States is the first instance of government regulation over this. They specifically talk about "online encyclopedias", and they must be aware that all other online medical wiki encyclopedias are mostly defunct and were never viable. The policy is in my opinion a Wikipedia-specific government guideline. Blue Rasberry (talk) 16:22, 8 December 2014 (UTC)[reply]
Bluerasberry Thanks - that is really helpful re companies - do you know if there is similar guidance for individual practitioners?— Rod talk 16:31, 8 December 2014 (UTC)[reply]
Rodw I can only say that in talking about WikiProject Medicine, no one had ever seen anything like this FDA proposal before, and the thought was that this was the first statement of its kind. For individual practitioners, some organizations make their own statements, typically in their own "social media policy". I know of no standardized social media policy, and even the Wikimedia Foundation as of a few years ago did not publish their own policy.
Another related issue with individual practitioners is how they should respond to any consumer health information, including those provided by apps or collected through activity trackers. There is no policy anywhere on these things.
I have seen no organization jump into the online collaborative space to the extent that HealthTap has, but even that organization, its publications, and its community are difficult to describe. Blue Rasberry (talk) 16:37, 8 December 2014 (UTC)[reply]
Bluerasberry Your answer sent me searching. I found this response to the FDA guideline but could not find any of the regulatory bodies social media policies which specifically addressed my original question. One useful document IMS Institute Engaging patients through social media did include the sentence " HCPs have a strong vested interest in supporting the updating and maintenance of medical information utilized by patients online, including Wikipedia." Perhaps WikiProject Medicine could draft a suitable paragraph and submit to the regulators for consideration and inclusion in their social media policies?— Rod talk 17:18, 8 December 2014 (UTC)[reply]
Rodw There was more discussion about this policy when the FDA solicited comment. As I remember, there was not sufficient interest in WikiProject Medicine in participating in the FDA's request for comment as a group, although some individuals may have commented.
The FDA statement provides more clarity than I expected and I appreciate its boldness. I do not immediately imagine more that I would expect them or anyone else to say. In my view, their statement on what applies to organizations also applies to individuals, and I like the statement.
If you have something more to say, I could help you get comment on your view. What more do you want? Blue Rasberry (talk) 17:42, 8 December 2014 (UTC)[reply]
  • "...found that around half of the editors (15/32) are qualified medics or other healthcare professionals" How do you know this? I think you meant to say that half claim to be medical professionals. Without WMF verifying the credentials of Wikipedians, we may well have a collection of imaginative children and quack doctors writing these articles. Chris Troutman (talk) 17:49, 7 December 2014 (UTC)[reply]
    • Our survey was based on self-report, yes, so it is possible that participants were misleading with their responses. However, this seems unlikely. In some cases, the identities of our participants can be matched with external sources. While it is relatively easy to lie on an online questionnaire, most participants also consented to interviews and it would have been harder to maintain a false identity through an interview. A handful of cases have emerged in Wikipedia's history where editors have lied about their identity, but these are very much in a minority. Bondegezou (talk) 17:14, 8 December 2014 (UTC)[reply]
    • Agreed. However, we should acknowledge one fact here: Wikipedia is not written by doctors or scientists, it is written by the common folk like me and probably you who have no Ph.D. in that knowledge. Just because a Wikipedian likes a specific topic doesn't necessarily means that he/she is an expert in it. In majority of cases, editors who contributed to medicine field for example, are not necessarily doctors, otherwise they would have blocked for conflict of interest.--Mishae (talk) 19:32, 7 December 2014 (UTC)[reply]
      • I cannot see conflict of interest rules as being a reason to stop most doctors editing most health-related content most of the time. The fact is that Wikipedia is written by many doctors and scientists, and also by "common folk". Larry Sanger feels that experts should lead in a crowdsourced encyclopaedia. I think experience on Wikipedia has shown that experts will gravitate towards their areas of expertise and that much of the content on Wikipedia is written by experts, but that Wikipedia benefits by opening its doors to everyone. Ultimately, a policy based on content (content has to be verifiable against reliable sources) may work better that a policy based on privileging expertise. Bondegezou (talk) 17:14, 8 December 2014 (UTC)[reply]
        • @Bondegezou: No, I was talking about BLP's on physicians since in numerous of cases I get into contact with the subject while writing about him/her. As far as expertise go, maybe we didn't understood each other here. What I tried to say was that we don't have (or at least we trying to avoid) subjects that edit about themselves. Another thing to add here is that the word expert to me means someone like Stephen Hawking, a professional in his field who's books are written in unconcise (in my opinion manner). Wikipedia, on the other hand, is an encyclopedia based on popular science (think of Gerald Durrell books for example). Let me know if my comment still doesn't makes sense I will try to explain my best. --Mishae (talk) 20:58, 9 December 2014 (UTC)[reply]
  • My thanks to everybody for their comments on my Op-Ed and the original work. I'll try to reply to everyone in due course. Bondegezou (talk) 17:15, 8 December 2014 (UTC)[reply]
  • An other interesting question: How many of the people asked to fill out the questionair actually did? If this was only 10%, then it's quite likely that the number of medical professionals among those asked was as low as 10%, and possibly even 5% - medical professionals were probably more likely to answer this than other people. עוד מישהו Od Mishehu 16:55, 9 December 2014 (UTC)[reply]
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