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

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

I N 2012… 3404 waiting 514 Donors 3

T RANSPLANT M ANITOBA - G IFT OF L IFE P ROGRAM 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 4

L EGISLATION 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) 5

T HE D ONATION P ROCESS Referral Info session Declaration (Transfer?) Consent Assessment Allocation OR Family Follow-up 6

T HE N EED FOR A R EGISTRY 7 “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

F UNCTIONS OF THE R EGISTRY 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. 9

B UILDING A R EGISTRY 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? 10

B UILDING A R EGISTRY User issues: Bilingual Accessible reading level Quick and simple to navigate Intuitive Internal use issues Equipment Training Point of access 11

T HE D ONATION P ROCESS C HANGES 12 Referral Registry check Info session Declaration (? Transfer) Consent Assessment Allocation OR Family involvement

T HE LAUNCH 13

L AUNCHING 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 14

M EDIA COVERAGE HIGHLIGHTS 15

E ARLY STATS 16

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L ESSONS L EARNED 18

K NOW YOUR AUDIENCE 19 Health Informers12345 Family Doctor1% 15%22%60% Government Website5%6%25%37%21% Social Media22%27%33%10%1% News Media10%20%43%20%3% Health Website3%4%20%55%10% Family & Friends8%13%30%28%19% 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

D O Y OU HAVE THE R ESOURCES TO S UPPORT A W EBSITE ? What happens when the site goes down? Can your server handle the traffic? Who answers the phone calls and s from the public? Can you offer support in French? Other languages? Do you have the budget to maintain the site and keep it relevant? 20

S OCIAL 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 21

W HERE A RE W E ? 8967 registered donors First “hit”: spring 2013 To date: Tissue Bank of Manitoba: 3 hits* TM-GLP: 0 hits** 22

M OVING F ORWARD 23 Card to Click campaign Face-to-face interaction opportunities Milestone Celebrations Inspirational sharables Hospital staff engagement