During a visit to her primary care doctor at the University of California, San Francisco (UCSF) Medical Center, Linda—an Asian American who asked to be identified only by her first name—heard about a research project focused on increasing screening for the liver diseases hepatitis B and C in Asian Americans. She was intrigued, she says, because she knew very little about these diseases.
What she learned astonished her: Roughly 2 million Americans are chronically infected with the hepatitis B virus, the most common cause of liver cancer. About half of those infected are of Asian ancestry. In most cases, they or their parents were born in China, Vietnam, Korea, or another country where hepatitis B infection is common. Another 3 million people in the United States are chronically infected with hepatitis C, which can also cause liver cancer. Some groups of Asian Americans are at increased risk.
Because the viruses often cause no symptoms, many people are infected without knowing it. A simple blood test can identify the infections and open the door to treatment that can preserve a healthy liver and reduce cancer risk. (PCORI is funding projects that compare current treatments.) More than 40 percent of Asian Americans, however, haven’t been tested for hepatitis B or C.
Linda learned that the research project was seeking Asian Americans to join a patient advisory council that would test a tablet computer app intended to raise awareness about hepatitis B and C. She agreed to help. Linda also decided to be tested for the infections herself and to talk to her family and friends about the risks posed by these viruses.
Users answer a few simple questions in the app being tested. Their answers prompt a video clip of a doctor who provides targeted information. (Photo courtesy of Tung Nguyen, MD)
Patient and Community Input
“Liver cancer and hepatitis B are major health disparities for Asian Americans, while hepatitis C is a rising problem,” says Tung Nguyen (pronounced “Win”), MD, of the UCSF School of Medicine. Asian Americans may fail to undergo screening for hepatitis B and C because they don’t realize that they are at higher risk than the rest of the population and because their doctors don’t suggest it.
Nguyen, along with Mandana Khalili, MD, of San Francisco General Hospital, leads the PCORI-funded project that seeks to determine whether an app it developed results in more Asian Americans choosing to undergo hepatitis B and C screening. The team is conducting a trial with 416 participants—Asian Americans who have not had a hepatitis screening test.
In this project, Nguyen and his research team have worked closely with community organizations, focus groups, and two patient advisory councils consisting of members of the Asian-American communities in the San Francisco Bay area.
In this demonstration, a video of Tung Nguyen, MD, asks the user the app’s first question. (Video courtesy of Tung Nguyen, MD)
The Video Doctor
The app can be accessed in English, Cantonese, Mandarin, or Vietnamese. Learning about hepatitis B and C screening through the app takes about 10 minutes, and it is intended for use in doctors’ waiting rooms.
Users answer a few simple questions to indicate their current knowledge and attitude about hepatitis B and C and the screening tests. After answering each question, the user sees a customized video clip showing a white-coated Asian-American doctor with a warm, empathetic communication style.
If a user, for example, answered the question “Have you thought about getting a hepatitis B test?” with “No,” the video doctor asks more questions to gently probe for the reasons behind that answer. Focus groups had identified three common reasons that people had not been tested: they didn’t know about the disease, they didn’t think anything could be done about it, or they felt they had more urgent health problems. In the app, video clips address all these reasons; each user sees the clip relevant to the barrier he or she identified.
Screenshots from the app showing English and Chinese (top) and Vietnamese (bottom).
Addressing Concerns
The app also tackles two other concerns highlighted by the focus groups. One is the stigma surrounding hepatitis because the infection is associated with injection drug users and men who have sex with men. In China, for example, people with hepatitis infection often have experienced discrimination. The video first explains that most Asian Americans acquire hepatitis B infection at birth from their mother, who is infected. In addition, the video doctor emphasizes that test results are confidential; only the patient and his or her doctor will know.
The other concern stems from patients’ reluctance to put questions to their doctors. To address that reticence, the video doctor offers tips on how to talk with a doctor about hepatitis. In addition, after a patient finishes using the app, office staff provide two copies of a bilingual fact sheet about hepatitis B and C screening that is tailored to the patient’s responses. The sheet suggests that the patient give one copy to the doctor to spark a conversation.
In the current trial, primary care physicians’ practices, rather than individual participants, have been randomly assigned to offer one of two activities. Patients in some practices work through the app, while patients in other practices use a similar program offering advice to Asian Americans about exercise, diet, and weight.
After three months, the researchers will contact participants and check their medical records to see how many got the screening tests for hepatitis B, C, or both. Results are expected by the end of 2017.
Participants with positive test results will receive additional diagnostic testing to help determine the best monitoring and treatment for them, explains Nguyen. Several medications are available that can control hepatitis B or cure hepatitis C.
Keeping It Short
“It’s actually very hard to develop an app that’s informative, interesting, and short,” says Nguyen. Getting feedback from patient and community partners as the app was being developed was helpful, he says. The researchers sought advice on topics including how best to phrase the app’s questions to avoid misunderstandings and what color and shape the touch-screen response buttons should be.
Genevieve Jopanda, the former executive director of San Francisco Hep B Free, a community organization that partnered with the research team, says respecting users’ attention span was an important consideration. In response to feedback, the researchers scaled back, from 10 to 3, the number of questions about barriers to screening. Another consideration was overcoming language barriers. “The fact that people could use the app in their native language increased their comfort level,” Jopanda says.
We are challenging the assumption that people with limited English can’t use healthcare technology. Our assumption is that if you design the technology right, not only will limited-English speakers be able to use it, they will love it.
Tung Nguyen, MD Professor of Clinical Medicine, University of California, San Francisco
Preliminary results suggest that participants like the app and find it easy to use, says Nguyen. Even older people using a tablet computer for the first time catch on quickly.
Nguyen says he hopes the project’s findings will also contribute to a better overall understanding of how mobile health technologies can help people with limited English skills improve communication with their doctors.
“We are challenging the assumption that people with limited English can’t use healthcare technology,” he says. “Our assumption is that if you design the technology right, not only will limited-English speakers be able to use it, they will love it.”
Posted: September 12, 2016
