Online Donor Registry (Ontario)

The Ontario Online Donor Registry is a website where Ontario residents, age 16 and older, can register their consent to be an organ and tissue donor.[1] This registry was created to help ease questions and ambiguities with organ donor wishes. The virtual registry also increases Ontario donations with increased accessibility. The registration process can be done through beadonor.ca.[2] Online donor registries have also become popular in the United States, where one can register through Donate Life America; Malaysia, registering through their National Transplant Registry; and Saudi Arabia, registering through the Saudi Center for Organ Transplantation.[3][4][5]

History

In 2000, the Ontario government created the Trillium Gift of Life Network for the role of organizing Ontario’s organ and tissue registry.[6] The purpose of creating the Trillium Gift of Life Network was to increase organ and tissue donation across Ontario and improve the process of registering.[6] The Trillium Gift of Life Network also is in place to support health care professionals in implementing decisions surrounding organ and tissue donation.[7]

An online organ donation registry through the Trillium Gift of Life Network became available June 14, 2011 known as Be a Donor.[8][9] The registry was created to save lives and decrease transplant wait times.[9] Other initiatives to promote this registry include to raise awareness and information, which permits Ontarians to make decisions about organ and tissue donation.[7][10] Providing awareness about the online organ donation registry will make organ donation convenient and help to create a system for individuals who may be interested in this decision but unaware of how to register.[11] Once an individual is registered on the Be a Donor site, their decision is recorded in the Ministry of Health and Long-Term Care database.[10]

The increased awareness created by Be a Donor in Ontario caused the online registry to crash on June 15, 2011 due to the numerous responses and over-subscriptions of Ontarians who wanted to sign up to be donors.[12]

Operation

The online donor registry was created in order to document an individual's desire to donate their own organs at their time of death.[13] The new registry, which was announced in 1997 in British Columbia, has allowed for remote and electronic accessibility.[13] Prior to 1997, an individual’s decision to donate was indicated by the presence of a decal on one’s driver’s license.[13] The difficulty was that people had to put the decal on their license, which was likely considered to be inconvenient. Also, in the event of an accident, it was not always easy to find a person’s license. A vast improvement brought in by the new online registry is the simplicity in determining a person’s donation wish at the time of an accident or other serious injury, which would otherwise be difficult to determine.[14]

As of June 2011, the Trillium Gift of Life Network made it possible for Ontarians to register online.[15] This will ease the process of registration and minimize the shortage of donors.[14] After observing the improvement that both British Columbia and Ontario have started to experience, Manitoba is expected to follow suit and implement its own registry.[14][16]

In order to register consent in Ontario for organ donation, the individual must have two important criteria. These criteria require the individual to be at least the age of 16 years as well as have a valid Ontario Health Card Number[17] and version code.[1] Once an individual registers, their information is recorded into the Ministry of Health and Long-Term Care’s database[18] and version code.[1]

Media coverage

The Toronto Star, CBC News, and CTV News have publicized the Ontario online organ donation registry, among other local newspapers. The registry has received much praise from its former in-person registration at ServiceOntario center and mail-in consent form.[19] According to Auditor General Jim McCarter, 40 hospitals were not required to alert Trillium Gift of Life Network that they had patients on life support who required donors.[20] Be A Donor [21] will help people have a more complete life, as exemplified by Consonni, whose life was on hold for four years for a liver transplant.[9]

How to register

There are three ways of registering for the Online Organ Donor Registry. The first way is online. Steps to register online:

  1. Go to beadonor.ca and click on Register Now
  2. User is redirected to an Ontario Service website, click on Start Online Service.[1]
  3. Then, click on I Want to Register.[22]
  4. Next, a Registration Verification screen with the following questions:
    1. My current health card is:
      1. A red and white Health card
      2. A photo Health card
    2. Health card number and version number (if shown on card)
    3. Date of Birth: Year/Month/Day
  5. Once all filled in, click Next
  6. The final page will say; Donor Status: Yes, you are a registered organ and tissue donor.

If one is not able to register online, you can either go to a Service Ontario center or download a paper copy of the consent form and send it to a Service Ontario center.[23]

Statistics

Statistics can be a great way to see the reasons behind needing certain registries in a country. The following are statistics on the wait-list and the transplants performed in Canada in 2008, 2009, and 2010.[24][25][26] The data is from the Canadian Institute for Health Information that focuses on British Columbia, Alberta, Saskatchewan, Manitoba, Ontario, Quebec, and Nova Scotia.

From 2001 to 2010, kidney and liver waitlists decreased, respectively by 330 and 27 patients.[27] The pancreas waitlist, however, increased by 24 patients since 2001.[27] Heart, lung, and heart with lungs remained moderately stable.[27] These trends are indicated in the Organ wait-list by organ for 2001 to 2010. Transplants from 2001 to 2010, however, indicated an increased trend by 275 operations in deceased and living kidney, kidney pancreas, deceased and living liver, heart and lung transplants.[27] Heart with lung transplants remained stable.[27] These trends are indicated in the Organ transplant by organ for 2001 to 2010.

Ontario organ wait-list by organ from 2001 to 2010. Statistics from Trillium Gift of Life.
Ontario organ transplant by organ from 2001 to 2010. Statistics from Trillium Gift of Life.

Canadian organ wait-list

Looking at the statistics for Canada, one can see that there has been an increase in the number of people waiting for a transplant between 2009 and 2010, while between 2008 and 2009 there was a decrease in the number of people on the wait-list.[24][25][26]

Canadian organ wait-list
Total number of patients (2010)[26]Total number of patients (2009)[25]Total number of patients (2008)[24]
Canada4,5293,7964,380
Provinces
British Columbia373321308
Alberta725472620
Saskatchewan145161144
Manitoba262177167
Ontario1,5151,2291,739
Quebec1,2411,2021,159
Nova Scotia268234242

Ontario organ transplants

Since 2008 there has been a steady increase of people receiving transplants. Comparing the number of transplants performed to the number of people waiting in 2010, there are twice as many people waiting then there is transplants being performed. This may be a sign of what is to come in future years. If the wait-list continues to increase at a faster rate than the number of transplants performed, the demand is not going to meet the supply.[24][26]

Canadian Organ Transplant performed
Total Number of patients (2010)[26]Total Number of Patients (2009)[25]Total Number of Patients (2008)[24]
Canada2,1532,1382,083
Provinces
British Columbia295211266
Alberta342291286
Saskatchewan21535
Manitoba585053
Ontario934980836
Quebec411452479
Nova Scotia111139128

Advantages and disadvantages

The online donor registry presents a way to benefit lives. While the online aspect of the registry makes organ donation easier, there are both advantages and disadvantages.

Advantages
  • Registering as an online organ donor has the potential of saving as many as eight lives, as well as improving the lives of seventy-five more.[28]
  • There are privacy standards put in place by the Ontario government to protect each individual who provides personal information online during the registration process.[14]
  • Registering yourself online as an organ donor eliminates the need for family members to make the decision to donate your organs in the event of an unexpected death.[29]
  • Donors are eligible to register online independent of factors such as their medical history, age, and sexual orientation.[29]
  • The online registry has made giving consent to donate much more convenient and accessible.[30]

Disadvantages
  • As with any online service, technical problems may arise while inputting information into the registry; therefore, the information may need to be entered a second time, which may deter individuals from spending the time to re-register.[14]
  • Certain religions, such as the Jehovah's Witnesses, oppose organ donation and transplantation.[31]
  • It is considerably expensive to be screened and to undergo testing procedures.[32]
  • There are several criticisms to the selection process in deciding who receives a transplant. One verdict claimed that patients on the waiting list, with a low to medium possibility of dying, would not show an improvement in their life expectancy after a transplant. Therefore, only patients on the waiting list with a high possibility of dying will increase their life expectancy after receiving a transplant.[33]

Existing registries

The online organ donation is not a new concept. Greater awareness has been necessary in supporting hospitalized patients, as seen with Saudi Arabia, where patients may travel outside the country to receive proper treatment.

United States

There are approximately 52 online organ donation services in the United States.[3] Through Donate Life America, Americans can learn about organ donation among other contributions such as tissue donation, cornea donation, and living donation. When users select Register Now, they are directed to an interactive webpage where they identify the state where they would like to register as a donor.[34]

Malaysia

Through the Malaysian Society of Transplantation in Malaysia, citizens can explore the option of organ donation.[4] The Malaysian Society of Transplantation facilitates a direct link to the National Transplant Registry, that provides information and statistics on organ donation.[35] The website also allows Malaysians to register online.[36]

Saudi Arabia

The Kingdom of Saudi Arabia facilitates an information source about organ donation, making online forms and donor cards available to download.[5] Their mission is to improve patient life expectancy as well as easy patient suffering. They also provide Regulations and Procedures for Organ Donation from the Living Genetically Unrelated. Organ donation is criticized to be a cultural taboo that can lead to a death sentence, especially young accident victims or the chronically ill.[37] Many citizens are forced to travel abroad to India and to the Philippines to buy an organ since organ donation is not considered an obligation for many in the Arab World and Saudi Arabia.[37]

References
  1. Service Ontario. "Online Organ and Tissue Donor Registration". Service Ontario. Retrieved 18 July 2011.
  2. Be a Donor
  3. Donate Life America. "Local Contacts". Retrieved 9 July 2011.
  4. Malaysian Society of Transportation. "Organ Transplantation Donor Registration". Malaysian Society of Transportation. Retrieved 9 July 2011.
  5. Saudi Center for Organ Transplantation. "Saudi Center for Organ Transplantation :: Referral Center at the GCC Heath Council". Retrieved 9 July 2011.
  6. Trillium Gift of Life Network. "About TGLN". Gift of Life Network. Retrieved 20 July 2011.
  7. Trillium Gift of Life Network. "What We Do". Gift of Life Network. Retrieved 20 July 2011.
  8. Be a Donor
  9. O'Flanagan, Rob. "Organ donors can now register online in Ontario". News. Guelph Mercury. Retrieved 9 July 2011.
  10. Service Ontario. "Learn About Organ & Tissue Donation: The organ and tissue donation process". Service Ontario. Archived from the original on 27 June 2011. Retrieved 20 July 2011.
  11. Social Media Release. "Ontario makes it easier to become an organ donor". Social Media Release. Retrieved 20 July 2011.
  12. 680 News Staff. "Ontario's online organ donor registry swamped with responses". Rogers Communication. Retrieved 20 July 2011.
  13. BC Transplant. "Organ Donor Registry: How to Register". BC Transplant. Retrieved 18 July 2011.
  14. BC Transplant. "Organ Donor Registry: Background". BC Transplant. Retrieved 18 July 2011.
  15. Boyle, Theresa. "Ontario creates online donor registry". Toronto Star. Retrieved 18 July 2011.
  16. Greenberge, Lee. "Ontario simplifies online organ donor consent process, but website promptly crashes". Ottawa Citizen. Retrieved 20 July 2011.
  17. Ontario Health Card Number
  18. "Ministry of Health and Long-Term Care's database". Archived from the original on 2011-06-27. Retrieved 2011-07-19.
  19. The Canadian Press. "Ontario sets up online organ donation registry". Health. The Canadian Press. Retrieved 9 July 2011.
  20. Staff Reporters. "Auditor calls for online organ donor registry". News & Features. Retrieved 9 July 2011.
  21. Life, Trillium Gift of. "You can now register online to be an organ and tissue donor". Retrieved 28 August 2016.
  22. Service Ontario. "Online Organ and Tissue Donor Registration: Notice". Service Ontario. Retrieved 18 July 2011.
  23. Service Ontario. "Other ways to register your consent". Service Ontario. Retrieved 18 July 2011.
  24. Canadian Institute for Heath and Information. "2008 Table 1A: Transplants, by Organ and Donor Type, Province of Treatment, Canada (Number)". Canadian Institute for Heath and Information. Retrieved 18 July 2011.
  25. Canadian Institute for Heath and Information. "2009 Table 1A: Transplants, by Organ and Donor Type, Province of Treatment, Canada (Number)". Canadian Institute for Heath and Information. Retrieved 18 July 2011.
  26. Canadian Institute for Heath and Information. "2010 Table 1A: Transplants, by Organ and Donor Type, Province of Treatment, Canada (Number)". Canadian Institute for Heath and Information. Retrieved 18 July 2011.
  27. Trillium Gift of Life. "Statistics". Retrieved 1 August 2011.
  28. Service Ontario. "Online Organ and Tissue Donor Registration". Services For Residents. Queen's Printer for Ontario. Retrieved 9 July 2011.
  29. Service Ontario. "Frequently Asked Questions". Retrieved 9 July 2011.
  30. Boyle, Theresa. "Ontario creates online donor registry". Social Policy in Ontario. Toronto Star. Retrieved 9 July 2011.
  31. Easterbrook, Gregg. "Organ Donation: Where your Religion Stands". Faith & Prayer. beliefnet. Retrieved 9 July 2011.
  32. Peak Online. "Outdoor fitness plans". Business. Peak Online. Retrieved 9 July 2011.
  33. Barber, Norm (2007). The Nasty Side of Organ Transplanting. Adelaide: The Online Book Page.
  34. Donate Life America. "Register as an organ, eye, or tissue donor". Retrieved 9 July 2011.
  35. National Transplant Registry. "About NTR". National Transplant Registry. Retrieved 9 July 2011.
  36. Pusay Sumber Transplan Nasional. "Pendaftaran Secara "Online"". Retrieved 9 July 2011.
  37. Wahab, Siraj. "Group seeks shift on organ donations". Arab News. Retrieved 9 July 2011.
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