Many people have had the same experience I had one day: Sitting in a doctor’s examination room, having the doctor diagnose me with something, me asking a question, and the doctor pulling up the Wikipedia article about the topic to answer my question. In moments like this, it makes you realize how much even subject matter experts like physicians rely on Wikipedia to remind themselves of the specifics of something they’re trained in.
But is that content on Wikipedia up to date with the current medical understanding of a topic? The answer is a solid “maybe”. That’s why Wiki Education works with a variety of organizations in the medical space to ensure Wikipedia’s coverage of medicine is as high quality as possible.
One such initiative we’ve been running for the last two years focuses on ensuring Wikipedia articles have patient-centered outcomes at their forefront. When a medical practitioner has a number of options for treatment, it’s important for patients, caregivers, and the clinicians themselves to base their treatments on research to be the most effective for patients. The gold standard for citing medical information on Wikipedia is Systematic Reviews. They look at a corpus of primary research studies on a particular topic and the consensus among a variety of studies, rather than relying on a one-off study whose findings may not be replicable.
The Patient-Centered Research Outcomes Institute (PCORI) is one publisher of systematic reviews in the medical field, with reviews addressing important topics like infantile epilepsy, cervical ripening, atrial fibrillation & stroke prevention, and early rheumatoid arthritis, among others. Over the last two years, thanks to a project funded by PCORI, Wiki Education has added information from these high-quality systematic reviews to Wikipedia.
We’ve taken a two-pronged approach: In our Wikipedia Student Program, we’ve empowered health professions instructors to assign their students to improve Wikipedia’s coverage of medical topics as a class assignment, including at institutions such as the University of Central Florida School of Medicine or Vanderbilt University School of Medicine. In our Wiki Scientists Program, we’ve engaged subject matter experts to directly improve content, running four six-week courses on how to edit Wikipedia.
Through both programs, we improved more than 40 medical articles on Wikipedia, adding critical information about patient-centered outcomes. Since our program participants added this information, these articles have been viewed more than 11 million times, demonstrating the power of Wikipedia as a vehicle for information dissemination. This better information helps patients, caregivers, clinicians, policymakers, and other important stakeholders have access to patient-centered outcomes research.
While our current two-year project with PCORI is wrapping up, we will continue to support health professions instructors who are interested in supporting students to improve Wikipedia’s coverage of medical topics. We encourage any interested instructor to visit teach.wikiedu.org to learn more.
Wiki Education expresses its thanks for the support of the Patient-Centered Outcomes Research Institute (PCORI), Eugene Washington PCORI Engagement Award (EADI #26698).
I wonder if part of the reason Wikipedia is only “maybe” up to date with the current medical understanding of a topic is simply a lack of incorporation of information that actually is up to date in one article that covers a topic but not in another? Here is an example. Lenacapavir is a game-changing new antiretroviral drug, the first in a new drug class to be approved by the FDA, which occurred in 2022. There is an up to date article on lenacapavir in Wikimedia. However. mention of lenacapavir and the remarkable results of recent randomized trials with this drug is absent from the general article on Management of HIV/AIDS , which does discuss all previous classes of antiretroviral drugs. The general article also has a section about the most appropriate source for guidance in how to use antiretroviral therapy, but these are 2015 versions that have been updated multiple times since then. The 2024 version of the US Dept of Health HS Guidelines for the Use of Antiretroviral Agents in HIV-1-Infected Adults and Adolescents, which is the consensus guideline most HIV specialists follow, discusses lenacapavir in some detail.