Multicultural Public eHealth Engagement in BC: I nter C ultural O nline health N etwork

1. Multicultural Public eHealth Engagement in BC:InterCultural Online health Network Using ICTs for “Healthy” Public Engagement September 10, 2009 Kendall Ho, MD FRCPC Helen Novak Lauscher, PhD

2. Essence of Engagement “Dizzy Gillespie”: lessons • They're not particular about whether you're playing a flatted fifth or a ruptured 129th as long as they can dance to it. • How do you know they like your music? If I got their toes tapping, then I know I’ve got them 2

3. iCON: Goals • Provide access to culturally relevant health information in Chinese language • Use multi-channel engagement to reach a variety of community members’ needs/ preferences • Gather and incorporate data to ensure community-driven content and format 3

4. Why iCON? Accurate & quality health information Enable self-care & health partnerships Impact on chronic disease management Health consumers & health professionals Between generations & care givers Peer to peer Serving multicultural public Internet language marginalization Computer skills Hunger for health knowledge 4

5. Web 2.0 Portal Live Forum Evaluation and Student Involvement Interactive Community:“Youtube for Health” iCON: Core Components

6. Health Forum, Surrey Health Forum, Vancouver 6

7. Live Forum Component Chinese and South Asian doctors, nurses, dietician, pharmacists… Diabetes: September 2007 (~700 attendees) Healthy Heart: April 2008 (~1000 attendees) Dementia: October 2008 (~700 attendees) Dementia: March 2009 (~750 attendees) Medical & university students Surveys, focus groups, interviews 7

8. Web component • Culturally appropriate and language translated: • Traditional and simplified Chinese characters • Punjabi • Chronic disease management content: • Symptoms • Self-management • Diet • Local resources • Interactive feedback • Online survey… Culturally relevant and translated health resources

10. www.iconproject.org

11. Public Engagement - Highlights • Over 95% of the surveys turned in first language • Female 65% Male 35% • Average 65 years (mid-30s to late 90s) • Patients and those interested in prevention • Family members • Caregivers • Focus Groups & Interviews

12. Findings: What does self care mean? • Trying to make healthy choices but need culturally relevant resources available in own language • Becoming better informed so they will have to “use the system less” • Having sufficient knowledge to be conversant with health professionals • Helping family members care for themselves “The problem with doctors is that we only go for a check-up once, but our condition may change before or after, even if we are well at our appointment…and he says “ok” – we don’t know for sure….” Necessary Ingredient: Culturally relevant resources available in own language

13. DO YOU THINK IT IS A GOOD IDEA TO KEEP A RECORD OF YOUR OWN HEALTH WITH YOU? Findings: Personal Health Record

14. Findings: Personal Health Record • 75% see an advantage in keeping a PHR in electronic format • 80% would like to learn how to create and best use their own electronic PHR • 88% of these think it would be helpful if iCON provided a template Themes: When a patient keeps his or her own record it facilitates knowledge and self-management. When both patient and physician keep a record it facilitates comparison and validation of information.

15. Another problem that some of us seniors have when we go to western doctors is that we don’t understand exactly what they’re trying to tell us. We often wind up agreeing to what he says, even if it might or might not be true. – Community Forum Attendee, 2008 Feedback

16. Insights and Lessons Learned in Public Engagement Evaluation All individuals want to be engaged, empowered, and contributors Evaluation is not an isolated activity -- it builds trust and partnerships between and among policy makers, academia, and community…. Evaluation is engagement. It promotes authenticity, mutual understanding Through engagement, evaluation has the potential to build capacity

17. iCON…What’s next? • New content areas • Healthy Liver Forum: November 21, 2009 • Expanding community partnerships • Digital Access Web 2.0 Network for rural and provincial reach • Research and evaluation for sustainability

18. Journey in Multiculturalism • Through health information, togetherness • Through evaluation, mutual understanding • Through continuation, transformative change

19. Thank-you to…. • Michael Smith Foundation for Health Research • Technology Enabled Knowledge Translation Investigative Centre • BC Ministry of Health • Vancouver Coastal Health Authority • Fraser Health Authority • UBC Faculty of Medicine • Safeway Canada • Progressive Intercultural Community Services Society • The many health professionals, students and community members who contributed in diverse ways Project Team • Francis Ho • Kendall Ho • Jennifer Cordeiro • Noreen Kamal • Shinie Tan • Janice Tian • Elizabeth Stacy • Helen Novak Lauscher • Francisco Grajales III • Jasmin Abizadeh • Nelson Shen