Research Profile - Health advice from your digital self

CIHR-funded researchers are developing an animated, web-based program that will help patients with rheumatoid arthritis find the best treatment option for their condition.

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Consider this – you've just been diagnosed with rheumatoid arthritis (RA). The doctor gave you information but, like many Canadians, you've looked for more on the Internet. Now you have too much information; what's accurate and what applies to you?

One out of every 100 Canadians will develop RA at some point in their lives, and many will face the same problem of too much information and not enough answers. With support from the Canadian Institutes of Health Research (CIHR), a group of researchers at the University of British Columbia and Arthritis Research Centre of Canada in Vancouver is creating an interactive tool that could help provide the most up-to-date information about treatment for patients with RA.

Led by clinical epidemiologist Dr. Linda Li and social worker Paul Adam, this team is taking lessons learned from the field of "edutainment" to make it easier for patients to learn more about RA and their treatment options. They've teamed up with instructors and graduate students at the Centre for Digital Media in Vancouver to create the Animated, Self-serve, Web-based Research (ANSWER) tool, an innovative program that will eventually be posted on The Arthritis Society's website.

"Everyone has an explanatory model in their minds that they use to make decisions," says Adam. "But as they are presented by more information, the model becomes more complex and it becomes harder to figure out what to do. Making matters worse, there is a lot of inaccurate information (about arthritis) out there."

According to Li and Adam, patients are more likely to learn from hearing and seeing another patient experiencing a similar situation. With ANSWER, arthritis patients choose an RA "storyline" that matches their own situation. Once they've selected a storyline, they will watch an animated character with RA experiencing the thoughts, feelings and issues that are common to people who are newly diagnosed. They can also access current, evidence-based information that will help inform their treatment decisions and clarify their concerns about the treatment.

"After they've completed a brief questionnaire and been assigned a storyline, a process that takes about 20 minutes, the patients can use the program to find information tailored to their condition and print out a one-page report with their concerns, questions and initial decisions about treatment. They can then take this report to discuss with their doctor," says Li.

ANSWER is not intended to replace a doctor's input, but rather to improve patient-doctor communication. Li and Adam hope that if the first version of the program is successful, it could later be expanded to help arthritis patients from various ethnic backgrounds communicate with their doctors, or even help people with other types of chronic diseases make important treatment decisions.