Organ and Tissue Donation Registry Manitoba Nursing Interests Association Meeting

1. Organ and Tissue Donation Registry Manitoba Nursing Interests Association Meeting September 16, 2013 Presented by: Jillian Barrott and Jessica Ammeter

2. Overview • Transplant Manitoba-Gift of Life Program • Meet SignUpForLife.ca • The Launch • What we learned • Where are we today? • Moving forward

3. In 2012…

4. Transplant Manitoba-Gift of Life Program • Deceased donation in Manitoba and NW Ontario • Staff • 7 nurse coordinators • 6 on-call physicians • Communications coordinator • Quality engineer • Secretary • Available 24/7 via HSC paging

5. Legislation Manitoba Provincial Legislation • Vital Statistics Act • Point at which death is declared • Fatalities Inquiry Act • Report to the Medical Examiner • Human Tissue Gift Act • Order of whom we can obtain consent Health Canada Federal Regulation • Safety of Human Cells, Tissues and Organs for Transplantation (2007)

6. The Donation Process • Referral • Info session • Declaration • (Transfer?) • Consent • Assessment • Allocation • OR • Family Follow-up

7. The Need for a Registry “An organ and tissue donation can save or enhance more than 50 lives. This centrally maintained, web-based registry will allow doctors and health professionals to easily access your record, quickly identify your wishes about organ donation and do their best to honour them.” --Manitoba’s Minister of Health, Theresa Oswald, 2012

8. SignUpForLife.ca

9. Functions of the Registry • Documented donor information • An up-to-date listing of registered organ and tissue donor patients including their donation intentions available to ODO physicians and nurses • An external web application that provides static pages to educate the public and guide them towards the online registration form.

10. Building a Registry • Technology issues: • encryption of the information as it is transported over the Internet and throughout the solution • Create a service that could withstand a great amount of traffic • Anticipate what could happen to other services like eChart Manitoba that use the same Internet connection?

11. Building a Registry • User issues: • Bilingual • Accessible reading level • Quick and simple to navigate • Intuitive • Internal use issues • Equipment • Training • Point of access

12. The Donation Process Changes • Referral • Registry check • Info session • Declaration • (? Transfer) • Consent • Assessment • Allocation • OR • Family involvement

13. The launch SignUpForLife.ca

14. Launching the registry • Funding provided by Manitoba Health • Worked with local ad agency ChangeMakers • 8-week campaign included rural and local radio, transit ads, newsprint and billboards • Press Conference at Millennium Library on Monday of NOTDAW hosted by Minister of Health, Premier of Manitoba and Transplant Manitoba, MC’d by Ace Burpee

15. Media coverage highlights

16. Early stats

18. Lessons Learned

19. Know your audience Participants were asked to rank each source in terms of reliability by circling the number that best applies. 1=Not Reliable; 3=Sometimes; 5=Reliable

20. Do You have the Resources to Support a Website? • What happens when the site goes down? • Can your server handle the traffic? • Who answers the phone calls and emails from the public? • Can you offer support in French? Other languages? • Do you have the budget to maintain the site and keep it relevant?

21. Social media uplifting or let down? • Facebook consistently a top referrer to the site • Helped to spread awareness with no funds invested • Used to get word out when we were trying to reach milestone number • Did eventually wind down • Facebook Organ Donor Status tool has not yielded the same push in numbers in Canada as it has in the US

22. Where Are We? • 8967 registered donors • First “hit”: spring 2013 • To date: • Tissue Bank of Manitoba: 3 hits* • TM-GLP: 0 hits**

23. Moving Forward • Card to Click campaign • Face-to-face interaction opportunities • Milestone Celebrations • Inspirational sharables • Hospital staff engagement