How do you teach HIV prevention in India, where sex education is banned in many states? How do you deepen the knowledge about HIV among citizens of Botswana, who are inundated with facts about the epidemic? As about 2.5 million people become infected with HIV every year, these questions continue to plague governments and nonprofits trying to stem the tide.
Piya Sorcar, a Stanford graduate and adjunct affiliate at its School of Medicine, can offer some answers. She worked for four years to launch the free HIV education program TeachAIDS in 2009. Now available in 15 languages across more than 70 countries, TeachAIDS uses carefully developed software to overcome cultural stigmas and bring competent HIV education to the masses. I spoke with Sorcar last week. Below are excerpts from our interview.
What made you go into global AIDS work? Was it your 2005 trip to India?
It did start in 2005. I was in graduate school and I started reading reports saying India had been identified as the next hot zone for people living with HIV. Despite hundreds of millions of dollars being spent on these issues, the knowledge levels were still very low. That didn't make sense to me. I wanted to learn more. I conducted a study in India across many states and found exactly the same results. Students there had basic questions like, 'Can you get HIV from coughing or sneezing?' The No. 1 question was about a cure. That was concerning, since there is no cure.
I wanted to learn what the issues were, where the money was going and whether there was a way to deal with the problem. It turned out there were a number of problems with trying to provide HIV/AIDS education, not just in India but in all different parts of the world. In India in particular, sex education had been banned across multiple states. Because of that, AIDS education was watered down or not given. We discovered that governments, NGOs, schools, health organizations and other groups were spending hundreds of millions of dollars a year delivering HIV prevention education. Unfortunately, the research showed many of those efforts were not as effective as they could be, while also being far more expensive than they needed to be. TeachAIDS solves both of those problems, as well as many others, while creating a positive impact on the global HIV prevention value chain.
Do you have a connection to India, as far as background?
I do. My parents are from India, so I'm second-generation Indian. We go back to India every year to visit my family and friends. We're extremely integrated with the culture.
The free TeachAIDS software is available in several languages and is considerate of local stigmas and taboos. How did you decide on that approach?
The software model is platform independent and can be used online or offline. We ended up using technology because it solved many of the HIV/AIDS education-related issues. For instance, there were a number of teachers who wanted to provide this education, but they were reticent because they either felt too uncomfortable to deliver it or they felt they didn't know enough. It's not like teaching science or math or English. It's a topic they didn't learn much about in order to be able to teach it. There's no teaching required with the software. The teacher can feel good about delivering it. Because it's such a taboo topic, students were uncomfortable asking their teacher questions or learning from their teacher. The software is a virtual, private learning environment where they can go through the materials at their own pace and feel comfortable with it.
Another issue is around accuracy. A number of the initiatives out there right now can't be accurate or comprehensive because of the way the material is delivered. With television commercials, radio jingles or billboards, you can only get one or two messages out. You're not getting a comprehensive understanding of how HIV is transmitted. Using technology, we can make sure the information is complete and it's delivered exactly the same way every time.
I was surprised to see that TeachAIDS software uses 2D animation, rather than more sophisticated computer animation. But there’s a specific reason you chose that style.
That has to do with comfort. We were looking at different kinds of images in order to maximize comfort. We looked at everything from stick figures to complex medical illustrations. People were extremely comfortable looking at the stick figures, but because they're so simple they weren't getting enough information to enhance learning. On the other extreme were the complex medical images, which were extremely explicit. People knew exactly what was happening, but there were high levels of discomfort with that. Teachers would feel uncomfortable sharing that with their students and we'd have trouble getting those types of materials approved. Even the learners, who were college-aged, would go through the materials themselves, but felt hesitant to share them with others. We looked at the spectrum of images and found that the 2D images were the perfect balance between clarity and comfort to optimize learning.
In your 99U talk, you argue innovators should “obsess over quality.” Why? And how do you obsesses over quality at TeachAIDS?
When you're talking about health education, it's extremely important to make sure people are understanding the concept you're trying to communicate. One of the most important examples is in the [99U] video, where we're trying to communicate issues around a cure or treatment for HIV and learning how different cultures use different words to communicate the message. When we're incorporating celebrities into the materials, it's important we're selecting people who are highly respected in the community and that people will want to listen to and learn from them. We worked hard to make sure the individuals were people who could be champions for the work we're doing.
How were the TeachAIDS materials tweaked for different countries, especially around local taboos?
We identified issues around what we called the HIV knowledge gap continuum. There were two extremes of this. One was in places like India, where sex education and HIV-related topics are too taboo to talk about and certain words and concepts can't be discussed or depicted visually. In areas like that, we were able to use the biology base and couple it with culturally-appropriate euphemisms to deliver the material. For instance, we couldn't show a picture of a couple kissing. But we could show a picture of a couple coming very close to kissing, then the camera pans up the tree and birds kiss instead.
The other extreme of the HIV knowledge gap continuum was what we found in Botswana, for instance. Although they'd been trying to give HIV education for decades now, there was superficial knowledge within the community. When you'd ask people, 'Can you get HIV from blood?' they'd say, 'Yes, of course.' But when the learners were pressed a bit more and asked, 'How do you get HIV from blood?' they didn't know. They had superficial knowledge. People were so sick of hearing about HIV because they had been for decades. They thought they knew enough when they actually didn't. For areas like that, using animation coupled with celebrities and a former president, we were able to come up with a novel approach. The learners felt like they were watching animation, but they were learning at the same time.
You became interested in this work in 2005, but TeachAIDS didn't launch until 2009. Why was it important to you to take four years to get this right?
Between 2005 and 2009, I was in graduate school. I finished my Ph.D. in 2009, which is why we spun TeachAIDS out of Stanford then. But the main point was that it was extremely important to make sure we got it right. There were so many interventions out there where people spend hundreds of millions of dollars and they weren't working. We knew if we were going to delve into this problem, we needed the right kinds of experts and partnerships. We wanted to take the time to develop materials that didn't just resonate, they worked. We ran large-scale studies in these countries to compare our materials to those currently being used there to make sure we were optimizing the learning and people were retaining the information.
You mentioned studies of the materials prior to 2009. What evidence do you have since then that TeachAIDS has been successful?
We've run a number of studies in India, China, South Africa and other countries. We compare our material to the materials in those countries now. When we were developing our material, we conducted a number of studies trying to make sure everything was culturally appropriate and people were learning. After that, we used other materials in those countries to run a retention study. In China, we took our materials and put them up against the government's materials and the leading NGO's materials. We were able to see what people were learning from the various interventions. We found that our materials outperformed the materials of these other groups. Our students were learning significant amounts, retaining significant amounts and their attitudes were also changing in significant ways.
There are other exciting things happening. In areas in India where sex education has been banned, governments have changed their mind and approved our materials for the first time. There's one state in India, Andhra Pradesh, with 84 million people. The stigma was so high in this state that a few years ago HIV-positive children were expelled from their school. The same state actually worked with us to have our materials distributed -- more than 25,000 copies -- in their schools. They've shown it on television multiple times. In Karnataka, another state that banned sex education, the government approved our materials to be sent out to every government and government-aided school. We're seeing these kinds of behavior changes. People want to work together to solve this problem.
What do you consider your greatest triumph?
All of this has been really exciting. When I started this work, I didn't think we'd be able to develop something in these areas that banned sex education. Beyond that, it's seeing the movement of different groups and people around the world who can use these materials to educate others. We're watching this multiplier effect take place.
As you continue to do this work, what worries you? What keeps you up at night?
There's so much more to do. We feel like we've made tremendous progress. I'm extremely happy with the research-based method we use and the careful attention to detail. But we need to create so many more language versions of this. Our mission is to develop materials for all countries around the world and have them used nationwide. When we're done HIV, we'll move onto the next topic.
So you have plans to make these materials for other diseases?
We do. The main learning is in the methodology of how to create this. We've been able to identify problems around why people aren't learning about these important health messages. We've been able to identify all these key factors in order to create the most effective materials, including how to best research and evaluate them. We've been getting calls asking if we're going to do the same thing for TB and malaria and Hepatitis C. Our plan is to distribute all of these materials someday.
Photo: Piya Sorcar / By Glenn Asakawa, University of Colorado