Helen: Welcome to Health Literacy Out Loud. I’m Helen Osborne, president of Health Literacy Consulting, founder of Health Literacy Month and your host of Health Literacy Out Loud.
These podcasts are a way for you to listen in on my conversations with some truly remarkable people and hear what health literacy is, why it matters, and ways we all can help improve health understanding.
Today I’m talking with Dr. James Heilman, who is a Canadian emergency room physician. He also has faculty appointments at the University of Saskatchewan and the University of British Columbia.
Beyond these more traditional medical roles, Dr. Heilman describes himself as a Wikipedian, serving as a volunteer editor of WikiProject Medicine. Welcome, Dr. Heilman.
Dr. Heilman: Thank you, Helen. I’m happy to be here.
Helen: I hear so much about Wikipedia. Now you’re talking about Wikipedia in medicine. Let’s take it from the top. What’s Wikipedia?
Dr. Heilman: Wikipedia is an internet site that was started in 2001. Our goal is to basically summarize all of human knowledge and provide it in an easy to understand format for everyone globally, and all for free.
Helen: All of human knowledge for free? I just want to make sure I have that one right.
Dr. Heilman: Exactly.
Helen: That’s not a modest goal. What is WikiProject Medicine?
Dr. Heilman: WikiProject Medicine is a subset of the goal of providing all of human knowledge and looking specifically at providing all medical knowledge to all people for free. WikiProject Medicine is one small part of Wikipedia. Wikipedia sort of organizes itself by topic area behind the scenes. There are about 200 different WikiProjects and WikiProject Medicine is one of them.
Helen: When you say all medical knowledge, are you talking about different anatomic features or diseases? Give me an example of what would be on this, please.
Dr. Heilman: It would be all of those things. We have 8,000 articles about pharmaceutical medications. We have about 28,000 articles about different medical topics including diseases, important people in medicine, etc.
Helen: I have a real sense of the scope there. How would somebody go about finding it? Walk us through this, please.
Dr. Heilman: The amazing thing about Wikipedia is how frequently it is read. They’ve done surveys of different populations of people. In the developed world, most people use Wikipedia at least some of the time.
They’ve done a survey of medical students and found that about 96% of medical students are using Wikipedia as part of their training.
Helen: That astounds me.
Dr. Heilman: Numbers are very similar for practicing physicians as well. If someone was to go to Google and type in a medical term, Wikipedia will often appear as one of the top 10 hits.
Helen: I’ve heard the other side of Wikipedia. People scoff at it. They say, “It’s out there, but is it accurate?” The fact that you said so many medical students and practicing physicians go there is interesting. Tell us about the structure there. Is this really credible information?
Dr. Heilman: One wants to take all sources of knowledge with a grain of salt. There are errors in Wikipedia, in standard textbooks, and in many places around the internet.
One of the benefits of Wikipedia is that if you’re reading along and you come across an error, you can fix it. That’s one of the things that drew me into becoming involved.
Back in 2007, I was working a night shift. I was looking around Wikipedia and I came across this article that was in horrible shape. It was full of mistakes. I thought, “This is dreadful.” Then I saw a little edit button and I realized that I could fix it.
Helen: And you did.
Dr. Heilman: Yes. Then I looked further and realized that nearly 250,000 people were reading this article every month. I realized that Wikipedia is a viable method to get important healthcare information out to the people of the world.
Helen: You said how much it’s used in developed countries. Is it used in developing countries too?
Dr. Heilman: It is used extensively in developing countries as well. Of course, people in the developing world have less access to the internet. However, that is changing and we are seeing increasing usage of Wikipedia in all parts of the world.
One of the exciting things is that more people are getting online via their cell phone. The Wikipedia foundation is working on some deals with cell phone companies such that their customers in the developing world can get free access to Wikipedia without data charges.
Helen: That’s terrific.
Let’s talk about this editing process. You are one of the editors there, but you also talked about your very first experience doing this. Our listeners all care about health communication somehow. Can you walk us through this process as if none of us have edited an article? Take it from the beginning.
Dr. Heilman: There are a number of ways people can get involved. One is if you come across an error and you don’t feel comfortable simply fixing it yourself, every article has an associated talk page. You can bring up concerns on the talk page and raise those concerns to your fellow editors who then read them over. If they agree with you, they will make the changes that you propose.
Helen: You said “your fellow editors.” Is there something official you have to do to become an editor?
Dr. Heilman: All you have to do is hit the edit button.
Helen: Anyone can go to this talk page too?
Dr. Heilman: Yes.
Helen: You can discuss it with others and say, “Should I make this correction? I know that this symptom really lasts for about two weeks rather than four weeks,” and then we can go talk about that?
Dr. Heilman: Exactly. The way discussions work is that we want people to come to discussions with references. We’re not adding people’s own personal opinions or experiences.
We want to base Wikipedia’s medical content on the best available evidence. If you see an error on Wikipedia and you find a reference that proves this is a mistake, you bring that reference to the talk page and say, “Reference X says that this statement isn’t correct. Please change it using that statement.”
Helen: Who would respond? Do you? Are you the official editor? Do you then go look up the reference and say, “Okay, that’s correct”?
Dr. Heilman: It’s sort of crowd sourcing. Many of the important articles like osteoarthritis are watched by hundreds of different people. If you suggest a change, one of the hundreds of people who keep an eye on that article will come and reply.
You can also go ahead and simply make the change yourself. You just hit the edit button and change the text that is correct. You add your reference in there and hit the save button. It’s as simple as that.
Helen: Listeners, I just want to let you know that James Heilman and I were talking to get ready for this podcast and he actually talked me through the process. By the time I hit the click button to get it live, it was so exciting. I couldn’t believe what I just did showed up on the screen.
Dr. Heilman: With that hitting of the save button, you have become a Wikipedian.
Helen: I’m a Wikipedia editor too. That’s neat.
We’re also searching for information. What if I screwed up on something? What if I’m not sure about the information and it looks a little iffy to me? What do we do about that?
Dr. Heilman: Ideally, we at Wikipedia want all of our statements to be supported by references. If you look at a typical Wikipedia page, you’ll see a sentence or two and then you’ll see a little blue link with a number.
If you click on that link, it should bring you to a reference. Then you can determine whether or not you consider that reference to be of good quality and whether or not that reference supports the text in question.
Helen: That’s really interesting. I didn’t appreciate the depth of what’s behind there.
You talked about how medical students and professionals go there. What about the lay public? Is this a little overwhelming to go there, or is this a source you would recommend that patients and family members go to for information?
Dr. Heilman: One doesn’t really need to recommend that people go to Wikipedia because most people are going to Wikipedia already. If you go to a search engine, much of the time it will direct you to Wikipedia. Many people use Wikipedia for all sorts of different knowledge when they’re looking up movies or different types of food.
Many people use it for healthcare. There’s an interesting survey out in the United States which found that the average person spends 12 hours on Wikipedia looking up healthcare information.
Helen: Oh my goodness! Do you think this is one of the primary sites where people go for health information?
Dr. Heilman: Based on www.Alexa.com data, Wikipedia appears to be the most used medical resource in the world.
Helen: Oh my goodness! It’s huge, it’s here and it’s not going away. When a patient brings a clinician information and says, “Here, I found this on Wikipedia,” how might we respond to that? Do we say caveats like, “This is crowd sourcing,” or, “Thanks, it’s a really good article”?
Dr. Heilman: It’s very important for patients to get involved in their healthcare. Wikipedia is offering one way for people to get involved in their healthcare.
We want our patients to be educated and to know about the disease or healthcare condition they have. Then they can help us as clinicians with shared decision-making to make the choices that are best for then within their own world view.
Helen: This is a perfectly reputable source to be able to do that, with the caveats that we’ve been talking about?
Dr. Heilman: Exactly. With respect to healthcare providers, I want to convince healthcare providers to get involved with editing Wikipedia than with using Wikipedia themselves.
Helen: Is this a paid position?
Dr. Heilman: Everybody who writes Wikipedia content is a volunteer, and that includes me. My real paying job is as an emergency physician.
Helen: We all do this for the greater good. You’d like to see all of us getting involved.
Dr. Heilman: Exactly. One of the criticisms of Wikipedia is that some of the content is written in language that is too complicated. We need people who are interested in simplifying text knowledge to come and help the medical editors learn how to write in simple English and translate some of the complicated medical text we have to a more understandable form.
We’re looking not just for physicians as volunteers. We’re looking for all sorts of people as volunteers.
Helen: You’re talking to our people. That’s what we do. Our whole world in health literacy is taking this complicated information and making it simpler. That’s where I wanted to go with this. Do we go through the same process to do that with the editing?
Dr. Heilman: Yes. The way one edits to add medical content is the same way one edits to simplify the medical content that is already there.
Helen: From the health literacy perspective, I know that some of this content is translated into many languages. Is that correct?
Dr. Heilman: Wikipedia exists in 286 languages and more languages are being added all of the time. WikiProject Medicine is currently collaborating with a group called Translators Without Borders. We’re taking key medical topics and working on first improving them in English and then translating them into as many other languages as possible.
Helen: That’s great. What about this plain language part? I see that sometimes in the list of languages. Is that what it is?
Dr. Heilman: Yes. It’s called Simple English Wikipedia. Some of the barriers people have is that content is written in complicated language. We have an English version of Wikipedia called Simple English, which is complicated ideas written in simple language.
Helen: That certainly seems like a natural fit for us to just get started doing something in there. That’s our skill area.
Dr. Heilman: Simplification is a key part of translation. We in English often don’t realize how huge our vocabulary is and the number of words we have to choose from.
In many languages, the number of words is closer to the 20,000 to 50,000 range. They have difficulty translating content from English into their own language because the words just don’t exist. If we can simplify that content, it makes the job of the translators much easier.
Helen: Is there any designation? Is whatever article we’ve been working on now designated as that Simple English? Or does it just stay as the right medical article?
Dr. Heilman: There are two different aspects. Every article in Wikipedia is a work in progress. Many of the articles are written by different people. Some of them are already written in Simple English. Some are written in very complicated English. We want people to come and simply English. If people want to work on creating very simple versions, then those can definitely go on Simple English Wikipedia.
Helen: That’s great. How about the spoken word? Or is it all written?
Dr. Heilman: There is additionally a project called Spoken Wikipedia where volunteers come around and read Wikipedia articles out loud. They upload these audio recordings and attach them to the Wikipedia article. For those who aren’t able to read or who have a problem with their sight, they can listen to a Wikipedian reading the article.
Helen: This sounds like it’s really getting back full circle. All of that knowledge and medical knowledge is there in so many formats. I keep thinking, “What about this? Are you missing that?” It seems like Wikipedia and WikiProject Medicine are really covering all of those many ways of communicating information.
What about ways to learn more? How can our listeners find out more about this?
Dr. Heilman: People are more than welcome to contact me. They’re also more than welcome to come to Wikipedia. If you type in “WP:Med,” that will bring you to the project page where it will tell you about what sort of efforts we’re working on. It’s a place where you can leave notes and meet with other people who are interested in this project.
Helen: That’s great. We will have additional references on the Health Literacy Out Loud website as well.
James Heilman, you are terrific. Your enthusiasm for this is contagious. Thank you so much for sharing all of this information about WikiProject Medicine with listeners of Health Literacy Out Loud.
Dr. Heilman: Thank you. I look forward to seeing you on Wikipedia.
Helen: I’m going to put on my Wikipedian hat. Thanks, James.
I was introduced to Dr. James Heilman by someone I met at a conference. It’s amazing what networking and crowd sourcing can do. Is there someone you think I should interview on Health Literacy Out Loud? If so, please email me at Helen@HealthLiteracy.com.
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Did you like this podcast? Even better, did you learn something new? If so, tell your colleagues and friends. Together, let’s let the whole world know why health literacy matters. Until next time, I’m Helen Osborne.