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Organ and Tissue Donation Registry
Manitoba Nursing Interests Association Meeting September 16, 2013
Presented by: Jillian Barrott and Jessica Ammeter
OVERVIEW
Transplant Manitoba-Gift of Life Program Meet SignUpForLife.ca The Launch What we learned Where are we today? Moving forward
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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
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LEGISLATION
Manitoba Provincial LegislationVital 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)
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THE DONATION PROCESS
Referral Info session Declaration (Transfer?) Consent Assessment Allocation OR Family Follow-up
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THE NEED FOR A REGISTRY
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“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
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.
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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?
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BUILDING A REGISTRY
User issues: Bilingual Accessible reading level Quick and simple to navigate Intuitive
Internal use issues Equipment Training Point of access
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THE DONATION PROCESS CHANGES
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Referral Registry check Info session Declaration (? Transfer) Consent Assessment Allocation OR Family involvement
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
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KNOW YOUR AUDIENCE
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Health Informers 1 2 3 4 5Family Doctor 1% 1% 15% 22% 60%
Government Website 5% 6% 25% 37% 21%
Social Media 22% 27% 33% 10% 1%
News Media 10% 20% 43% 20% 3%
Health Website 3% 4% 20% 55% 10%
Family & Friends 8% 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
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?
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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
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WHERE ARE WE?
8967 registered donors
First “hit”: spring 2013
To date: Tissue Bank of Manitoba: 3 hits* TM-GLP: 0 hits**
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