Need and Model of Telediagnosis -The Manitoba Experience

1. Need and Model of Telediagnosis -The Manitoba Experience Albert E. Chudley Mary Cox-Millar Sally Longstaffe University of Manitoba 4th Annual Fetal Alcohol Canadian Expertise (FACE) Research Roundtable Edmonton, AB September 9th 2003

2. Learning Objectives • Demonstrate the need for telehealth • Identify a process that will facilitate distant diagnosis and meet the needs of the North • Recognize the need to partner with external groups and communities • Discuss our experience in FAS diagnosis using telehealth

5. CADEC Community Services/Partnerships Direct Service For Children 0 to 7 Years of Age Family Support Government Support Healthy Child Manitoba Manitoba Health/Child Health Fetal Alcohol Family Association Child and Family Services Interagency FAS/E Program Children’s Special Services/FAS Outreach Team Society for Manitobans with Disabilities Provincial Outreach Therapy Services for Children Child and Family Services School Age Children FAS/FAE Support Services Special Education Classrooms David Livingstone School and Shaughnessy Park Child Guidance Clinic Children’s Special Services Child Psychiatry Support for Pregnant Women Nor’West Mentor Program Aboriginal Health & Wellness/ FAS/E Prevention Program Mentorship program The Pas and Norway House Northern Manitoba Services for Families Adult Services Diagnostic Services Fetal Alcohol Support Team – Thompson Interagency Group The Pas / Flin Flon Clinic for Alcohol & Drug Exposed Children Fetal Alcohol Support Team - Thompson

6. Reasons for and Benefits of Telehealth • Canada has many distantly located low population communities with limited access to specialty care • Reduced time and costs for travel • Timeliness of access to care • Reduced barriers to compliance with appointments • Facilitates family involvement • Enhances linkages amongst health professionals and community agencies • Provides access of education and training to rural areas

7. MBTelehealth • Partnering with the Prairie Provinces FAS Initiative and CADEC, the first link was with Thompson MB in 1999. • Following a $3M grant from the federal government, technical capabilities were greatly expanded in 2001. • Subsequent link to NorMan Region (The Pas and Flin Flon) 2002-present.

8. Model for Coordinated Assessment/ Follow-up Service (optional) Referral Screening Information Document CADEC Intake Intake Meeting Gathering Review Meeting with parents, school refer elsewhere Psychology defer or on hold by parental request unable to contact OT Speech & Language Medical Final (optional) Family Case Assessment Follow - up Report Debriefing Conference (Genetics, Planning Developmental) M.C.Millar/T.Benoit Nov/00 - Intake Assessment Follow - up

9. Paediatrics and Child Health Vol 7 March, 2002 Linked to 24 sites!

10. Telehealth Equipment • Province-wide LAN H.323 internet protocol video-conferencing system • Uses multi-site control unit • Portable equipment with document viewer

11. Total Network Utilization Fiscal Year 2002-2003 Total Number of Sessions: 2,031 [FAS sessions represent~27 encounters]

12. Utilization by Type of Session(shown by quarter year for 02-03 fiscal year) (All clinics including FAS)

13. Clinical Utilization (Actual Number) Fiscal Year 2002-2003 (All clinics including FAS)

14. Cost impacts, assumptions re: patients • Does not include indirect costs savings due to time off work, child care while away etc • No distinction made between costs borne by individual and those borne by health care system

15. Technical success: qualitative findings • Users satisfied with training received • Unanimous appreciation of technical support • Technology easy to use • Sites linked by satellite experience more problems • Some would like to enlarge network to more sites, have more drops, be available for emergent and urgent use 24/7

16. CADEC Telehealth Experience with FAS Diagnosis • Total of 27 links since April 1/99 • 8 of 27 links – planning/team meetings, presentations and/or education sessions • 19 of 27 links –assessment links • 27 children were assessed (initial assessment, consults and/or follow-up to initial assessment) • 4 of the 19 assessment links were training teams in diagnosis

17. Estimated travel savings: (FAS-24 month period)

18. Feedback From Users Following FAS Assessments • “Excellent… it is almost like talking face to face at your kitchen table with the doctors.” • “It should be in more communities…best thing that could ever come to the North.” • “It is an opportunity to see how the medical system works.” • “Bringing expertise to the community helps in building a team that is working in the best interests of the child.”

19. Feedback From Users Following FAS Assessments • “Travelling to Winnipeg is a stressor for many people.” • “Using telelink allows the children to be assessed with less disruption to their daily routine…a trip to Winnipeg would be 3 days from home!” • “A birth mother would be more willing to participate if she is supported through the process by people who know her and the child in the community.”

20. What Have We Learned? • Importance of establishing external relationships (CADEC team and the community) • Establish common and site-specific goals • Provide training as needed • Clarify process for referral • Establish guidelines for communication and clarify expectations

21. What Have We Learned? • Ask for feedback on experience • Need to wait for camera before speaking • Use close up mode when speaking • Provide a warm-up period for children to become accustomed to the interactive “talking television” and the room • Allow privacy (limit numbers in the room at any given time

22. Summary • Telehealth FAS Diagnosis has met the needs of some families in a northern community in Manitoba • On site coordinator trained in preparing the family for the diagnostic process and with good community links is essential • Need to link with local professionals and agencies

24. Thanks for not drinking, Mom