This Doctor Is Battling Health Misinformation One Wikipedia Edit at a Time
- Laasya Shekhar లాస్య శేఖర్
- 2 hours ago
- 8 min read
For over a decade, Dr. Netha Hussain has been part of the last line of defense against public health disinformation on Wikipedia, the free online encyclopedia.
Hussain started editing on Wikipedia when she was about 19 years old. At that time, she was a first-year medical student at Calicut Medical College in Kerala, India. Now a medical doctor and researcher based in Sweden, Hussain’s efforts to bust COVID-19-related myths led her to the 2020 Women in Open Source Award, a shoutout from the United Nations, and a Wikimedian of the Year Honourable Mention in 2021. In January, as part of Wikipedia’s 25th anniversary celebrations, Hussain was one of eight people featured in a video docuseries sharing a behind-the-scenes look at the lives and stories of Wikipedia volunteer editors around the world.
In the past year, global public health has faced unprecedented institutional threats, which Hussain primarily attributed to the deluge of disinformation spread by U.S. President Donald Trump through his global platform, as well as the drastic public health funding cuts his administration has carried out, some of which were previously reported by The Xylom.
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In an exclusive interview with The Xylom, Hussain discusses the cultural nuances of misinformation as she straddles the English-speaking and non-English-speaking worlds; how power, privilege, AI, and media consolidation fuel the spread of propaganda; and the next frontier of healing public health divides.
This interview has been edited for length and clarity.
Laasya Shekhar: How have you changed since you became an active Wikipedian? Did you learn something unexpected in this process?
Netha Hussain: On Wikipedia, everything is open: the discussions are open, everything you write is open, and earlier revisions of your article are open. You have to substantiate everything with references, and you need to have reliable references. So I learned evidence-based medicine in a very good way by writing for Wikipedia.
On Wikipedia, everything is open: the discussions are open, everything you write is open, and earlier revisions of your article are open. You have to substantiate everything with references, and you need to have reliable references.
Before that, as a medical student, I would be confused if this or that source was good, or if they might be giving contradictory information. You get a lot [of sources] online, and to be able to understand what is reliable, what is verifiable, how to write a neutral article, not be biased by anything, but write something neutral [can be difficult].
LS: What has been the biggest impact your articles have led to?
NH: During COVID-19, a lot of misinformation circulated online. I saw an article about a family who ate a poisonous fruit thinking that it would prevent them from getting COVID-19, and all of them were hospitalized. I started an article titled List of Unproven Methods Against COVID-19, and then enumerated most of the misinformation circulating online about COVID-19 — treatment methods, diagnostic methods, preventive methods. That was something that gathered a lot of attention and got translated into 18 languages at that time. It also got a lot of media coverage about how Wikipedia was combating misinformation about COVID-19.
In 2018, I also wrote an original article about infection from the Nipah virus, showing how it spreads, what virus is causing it, and the mode of transmission. It is still being read by people because Nipah infection still affects other South Asian countries, like Malaysia, Thailand, south of India, and Sri Lanka. And these infections come in clusters. So it affects an area, causes disease in maybe 20-30 people, then disappears, and then reappears in some part of the world again. So whenever it happens in a part of the world, I see the page views go up.
LS: You are fluent in English, Malayalam, and Swedish. What did you learn from editing Wikipedia articles in various languages? Did you observe any cultural differences in how people view and take action on public health?
NH: Malayalam is a smaller language on Wikipedia with around 70,000 articles. In contrast, the English Wikipedia has 7 million articles. Given this difference in the number of articles, I think there is so much more to be written in the Malayalam Wikipedia about health and different disease conditions.
Also, in Malayalam, the focus of writing the article is mostly on the local context. It’s important to write about what’s happening in Kerala because the audience speaks Malayalam. In English, for example, you have to have a more global perspective, because people from all over the world read it.
In terms of cultural context regarding health-seeking behavior, I think, in India, it’s mostly about immense trust in herbal medicine, particularly Ayurveda. But in the Western world, it’s mostly about skepticism towards big institutions. So when you bust misinformation on Wikipedia, I usually take this perspective: in Malayalam, when you write about treatment, you also say there are certain medications which are claimed to cure cancer, but cannot actually cure cancer. When it comes to English, you write everything, because a lot of people from different parts of the world read it, not just Western people.
In fact, India is the second-largest reader of Wikipedia in the English language. So it’s important that the global perspective is there.
LS: Public health misinformation didn’t end with COVID-19. What forms is it taking globally today?
NH: I think going five years back to COVID-19, misinformation spread very much on social media, particularly in channels like WhatsApp and Telegram, because when it is WhatsApp, it is not traceable online. It’s only visible to people who are in the group, and then it’s forwarded many times, and it goes into these echo chambers where people in that group probably validate it among themselves, and they send it to even more people. To understand the extent of that kind of misinformation was quite impossible, because all of this happened in closed circles.
If there are people or big companies or even governments spreading propaganda, and this propaganda is in large volumes, it can probably infiltrate the content that ChatGPT or Gemini, etc., are trained on, and in the end, they can give you bad information.
With the advent of generative AI, I think the obvious misinformation has decreased because large language models have been trained extensively with content from Wikipedia and other reliable sources. But on the other hand, we should now be wary of people who are building propaganda. If there are people or big companies or even governments spreading propaganda, and this propaganda is in large volumes, it can probably infiltrate the content that ChatGPT or Gemini, etc., are trained on, and in the end, they can give you bad information.
LS: What is dividing us on public health right now?
NH: What is dividing us is the political narrative related to public health. People are moving away from real science, real evidence; they have political views on things, and their healthcare behavior is colored by their political perspectives.
I think the biggest misinformation spreader in the U.S. is the President of the United States himself. When he says something, it gets echoed in different magazines, newspapers, everywhere. And given his power and privilege, his narratives are likely to influence a lot of people. Even if you don’t like him, or you don’t like what he says, even if you know that whatever he says is not true, it’s impossible to avoid seeing his content.
The United States used to be the biggest funder of the World Health Organization, and they have stopped doing that. So, WHO has weakened as a global institution when it comes to helping prevent and handle health crises, and providing guidelines.
Even if you don’t like [U.S. President Donald Trump], or you don’t like what he says, even if you know that whatever he says is not true, it’s impossible to avoid seeing his content.
There are, of course, healthcare agencies in smaller countries. But when the U.S. shifts from evidence-based medicine and goes into more propaganda and misinformation, and because English is one of the global languages and a lot of popular content comes from the U.S., this weakening has a global effect.
LS: Since the start of the second Trump administration, the U.S. Centers for Disease Control and Prevention (CDC) has gone from a trusted source of public health research and information to a source of vaccine misinformation. Have you noticed a change in how disinformation actors have operated in the year since Trump’s second term began?
NH: It is giving way for many people to spread misinformation freely online. When you do not have a website from the CDC sharing good content about vaccination, people are going to end up on other blogs or videos or YouTube channels or TikTok, and get their information there. So it’s very important to have good information out there; otherwise, people are very likely to fall into the trap of misinformation.
There is a conference called WikiCredCon hosted by WikiCred, an organization for strengthening the reliability of information on Wikipedia. We think about strategies, tools, policies, and practices for making the content on Wikipedia reliable.
There have also been efforts during periods of elections. For example, when there was an election in the U.S. and when there was an election in India, those were times when a lot of misinformation could propagate. Wikipedia created working groups that closely monitored the situation and ensured that bad information doesn’t propagate through our channels.
LS: Is there any aspect of your work where you feel torn? Why?
NH: I think the most difficult part of the process is to find consensus about different evidence. There can be evidence saying that coffee is good for your health, another saying that coffee is probably good for your health, and another saying that coffee is bad for your health. There is a lot of literature out there. Some of them are meta-analyses and systematic reviews, which are the most reliable ones, because a systematic review takes up evidence from a lot of scientific articles, and then tries to find the good evidence.
But what do you do when systematic reviews and meta-analyses don’t exist, and particularly in times of COVID-19 or any other public health emergency, when there is not enough time for somebody to produce a meta-analysis and the information landscape is changing very fast over time, when new articles are coming out every day? And then, how do you present that information to the public?
LS: Ownership of our social media platforms and media outlets is increasingly consolidated by a few corporations. For example, in January, TikTok agreed to a deal to sell its U.S. businesses to a Trump-backed consortium, which acquired CBS (one of the “Big Four” major broadcast TV networks) last year, and immediately ran into censorship controversies. How does that affect access to public health information?
NH: Well, this has happened in the past. The media has always had ties with, or was owned by, people with power and privilege. There have been very few exceptions to this. But now, media outlets are being consolidated under a very small group of people with power. And a handful of these people also own LLMs. Elon Musk, for example, has his own LLM, and owns X [formerly known as Twitter], and now he can use it to push his propaganda.
At this point, Wikipedia becomes very important, because we do not have an editorial model. Anybody could write articles on the platform as long as they substantiate it with verifiable evidence. Many of the LLMs that people use have been trained with content from Wikipedia and from more reliable sources, so we are probably much safer. But I think we have to think more about the neutrality of LLMs at this time, because a lot of people now consume news from AI than directly from media.
LS: What would you like people who use Wikipedia casually to understand about you and your work?
NH: Wikipedia is written by millions of people, so anybody can edit Wikipedia, as long as they have an internet connection, and some time and some knowledge to share with people.
It’s not like a YouTube channel where the creator is important, so you don’t really get any credit. People work as volunteers to do this, so they don’t get any money for doing this work.
