Online Donor Registry (Ontario)

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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]

Contents

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. OntarioWaitlistByOrgan.jpg
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. OntarioTransplantByOrgan.jpg
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

Disadvantages

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]

Related Research Articles

Organ donation Use of donated organs for transplantation or research

Organ donation is the process when a person allows an organ of their own to be removed and transplanted to another person, legally, either by consent while the donor is alive or dead with the assent of the next of kin.

Organ transplantation Medical procedure in which an organ is removed from one body and placed in the body of a recipient

Organ transplantation is a medical procedure in which an organ is removed from one body and placed in the body of a recipient, to replace a damaged or missing organ. The donor and recipient may be at the same location, or organs may be transported from a donor site to another location. Organs and/or tissues that are transplanted within the same person's body are called autografts. Transplants that are recently performed between two subjects of the same species are called allografts. Allografts can either be from a living or cadaveric source.

The Uniform Anatomical Gift Act (UAGA), and its periodic revisions, is one of the Uniform Acts drafted by the National Conference of Commissioners on Uniform State Laws (NCCUSL), also known as the Uniform Law Commission (ULC), in the United States with the intention of harmonizing state laws between the states.

Canadian Blood Services

Canadian Blood Services is a non-profit charitable organization that is independent from the Canadian government. The Canadian Blood Services was established as Canada's blood authority in all provinces and territories except for Quebec in 1998. The federal, provincial and territorial governments created the Canadian Blood Services through a memorandum of understanding. Canadian Blood Services is funded mainly through the provincial and territorial governments.

Eye banks recover, prepare and deliver donated eyes for cornea transplants and research. The first successful cornea transplant was performed in 1905 and the first eye bank was founded in 1944. Currently, in the United States, eye banks provide tissue for over 80,000 cornea transplants each year to treat conditions such as keratoconus and corneal scarring. In some cases, the white of the eye (sclera) is used to surgically repair recipient eyes. Unlike other organs and tissues, there is an adequate supply of corneas for transplants in the United States, and excess tissue is exported internationally, where there are shortages in many countries, due to greater demand and a less-developed eye banking infrastructure.

The Australian Organ Donor Register (AODR) is a government register, recording individuals who have agreed to donate organs and tissues in the event of their death. The register is operated by the Organ and Tissue Authority (OTA) and Services Australia through Medicare.

The National Marrow Donor Program (NMDP) is a nonprofit organization founded in 1986 and based in Minneapolis, Minnesota, that operates the Be The Match Registry of volunteer hematopoietic cell donors and umbilical cord blood units in the United States.

On October 19, 1984, the Congress of the United States approved the National Organ Transplant Act (NOTA). It not only established the framework for the U.S. organ transplant system but has served as a model for development of other transplant networks worldwide. Through the establishment of a national Organ Procurement and Transplantation Network (OPTN), the law directed that organ allocation would be managed on a national basis and be developed through a unique public-private partnership. Since the initial network contract was finalized in 1986, United Network for Organ Sharing (UNOS) has served as the OPTN under contract with the U.S. Department of Health and Human Services. OPTN policies are developed by a broad community that includes donation and transplant clinicians and professionals, as well as people personally touched by the donation and transplant experience. NOTA and subsequent federal regulation call on the OPTN to emphasize fair and equitable patient access to transplantation, as well as reliance on objective medical evidence and adaptability to rapid evolution in clinical treatment and scientific understanding. Many of the OPTN’s responsibilities, priorities and policies have changed over the years. Yet the lifesaving gift organ donation, and the continuing need of candidates awaiting a transplant, remain the same today as they did 30 years ago. To fulfill the ultimate goals of NOTA, we must continue to ensure that the national transplant network allocates organs efficiently and fairly. We must also build public knowledge and trust in organ donation to help increase transplant opportunities for everyone in need.

Donate Life America

Donate Life America (DLA) is a 501(c)(3) nonprofit organization leading its national partners and Donate Life State Teams to increase the number of donated organs, eyes and tissues available to save and heal lives through transplantation while developing a culture where donation is embraced as a fundamental human responsibility.

Organ trade is the trading of human organs, tissues, or other body products, usually for transplantation. According to the World Health Organization (WHO), organ trade is a commercial transplantation where there is a profit, or transplantations that occurs outside of national medical systems. There is a global need or demand for healthy body parts for transplantation, which exceeds the numbers available.

National Organization for Organ and Tissues Donation and Transplantation (Lebanon) Lebanese organ donation and transplant organization

The National Organization for Organ and Tissue Donation and Transplant (NOD-Lb) is a Lebanese non-profit organization affiliated to the Lebanese Ministry of Public Health. NOD-Lb was created by a joint venture between the Ministry of Public Health and the Lebanese Order of Physicians in Beirut.

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Gift of Life Marrow Registry

The Gift of Life Marrow Registry is a public bone marrow and blood stem cell registry headquartered in Boca Raton, Florida. Gift of Life facilitates transplants for children and adults suffering from life-threatening illnesses, including leukemia, lymphoma, other cancers and genetic diseases.

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Human Transplantation (Wales) Act 2013 United Kingdom legislation

The Human Transplantation (Wales) Act 2013 is an act of the National Assembly for Wales, passed in July 2013. It permits an opt-out system of organ donation, known as presumed consent, or deemed concent. The act allows hospitals to presume that people aged 18 or over, who have been resident in Wales for over 12 months, want to donate their organs at their death, unless they have objected specifically. The act varies the Law of England and Wales in Wales, which relied on an opt-in system; whereby only those who have signed the NHS organ donation register, or whose families agreed, were considered to have consented to be organ donors.

MOHAN Foundation

MOHAN Foundation is a not-for-profit, registered non-government charity organisation in India that works in the field of deceased organ donation and transplantation. MOHAN is an acronym for Multi Organ Harvesting Aid Network. It has offices in Chennai, Hyderabad, Bengaluru, Delhi, Mumbai, Chandigarh, Nagpur, Jaipur and information centers at Kerala and Imphal.

Organ donation is when a person gives their organs after they die to someone in need of new organs. Transplantation is the process of transplanting the organs donated into another person. This process extends the life expectancy of a person suffering from organ failure. Unfortunately the number of patients requiring organ transplants outweighs the number of donor organs available.

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The Trillium Gift of Life Network is an agency of the Government of Ontario responsible for the province's organ donation strategy, promotion, and supply. Ronnie Gavsie is the current President & CEO. The agency maintains the popular BeADonor.ca website.

References

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