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  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.
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. 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, 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.
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