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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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IN 2012…

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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

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SignUpForLife.ca

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

THE LAUNCH

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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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MEDIA COVERAGE HIGHLIGHTS

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EARLY STATS

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LESSONS LEARNED

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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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MOVING FORWARD

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