Health Advice From Your Digital Self
Healthcare Turns To Digital Media Team To Help Rheumatoid Arthritis Patients Choose A Line Of Treatment
September 2009 Research Profile
CIHR-funded researchers, Linda Li at the University of British Columbia and Paul Adam at the Mary Pack Arthritis Progam, are working with consumer collaborators and students of the Masters of Digital Media program at the Centre for Digital Media to develop an animated, web-based program that will help arthritis patients find accurate, relevant treatment.
The program, known as ANSWER, could improve doctor-patient communication and help arthritis patients to decide if the treatment option is ‘right’ for them. ANSWER addresses the concerns of many newly-diagnosed rheumatoid arthritis patients who have trouble finding reliable information about their treatment options.
One out of every 100 Canadians will develop Rheumatoid Arthritis (RA) at some point in their lives, and many will face the same problem of too much information and not enough answers that fit the context of their own situation. With support from the Canadian Institutes of Health Research (CIHR), a group of researchers at the University of British Columbia, Arthritis Research Centre of Canada (ARC) and Mary Pack Arthritis Program in Vancouver are creating an interactive tool that could help provide the most up-to-date information about treatment for patients with RA.
Led by clinical epidemiologist / physiotherapist 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 representatives from patient groups, including Canadian Arthritis Patient Alliance, Arthritis Consumer Expert and ARC Consumer Advisory Board, and 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 decision support program that will eventually be posted on The Arthritis Society's website. This research team also includes experts in decision aid development from University of Ottawa and Ottawa Health Research Institute.
"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, patients with arthritis 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, 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.
Photo (left to right) MDM Students Fouad Hafiz, Yingyun Shao, Felwa Abukhodair, Yamin Li, Karin Schmidlin, George Johnson (instructor), Liam Kelly and Conrad Chan with (seated) Paul Adam and Dr. Linda Li. Absent: Gwen Ellert.
Story originally prepared by the Canadian Institutes of Health Research www.cihr-irsc.gc.ca