The gift of life online

California turns to e-donor registry to help those in need of transplants

Debbie Morgan is in a race against time. With a failing liver, she's on a waiting list for a transplant and unsure how long it will take to get one. But Morgan is lucky because she lives in California, which recently launched an online organ donor registry.

Most Californians believe the state already had an organ donor registry. But that system merely consisted of a pink dot on driver's licenses to identify potential donors. The state did not have an electronic database that could store names for swift access during an emergency. If a car crash destroyed the driver's license of a potential donor, Morgan and others in a similar situation could have missed an opportunity to receive a new organ. In other cases, the pink stickers fell off driver's licenses.

"It takes a very long time to get a liver now," said Morgan, 48, an accountant in Riverside, Calif., whose liver disease has stabilized. "So many people are waiting, and there are not enough donors."

Every day, 70 people receive a lifesaving transplant somewhere in the United States. But 17 others die waiting for one, according to experts. Although about half the states have a donor registry, neither a national registry nor nationwide standards exist. States are largely on their own to figure out ways to find potential donors.

Federal officials have avoided the issue, said Paul Schwab, executive director of the Association of Organ Procurement Organizations, which represents 58 groups. Some members of Congress have sponsored legislation to create a national registry, but the issue failed to win enough support for passage. And the Bush administration's fiscal 2006 proposed budget seeks only $24 million for organ transplant issues, including grants for states to develop donor registries and funds earmarked for studying how to use information technology more effectively for matching donors and people in need.

"Establishing a federal registry would not be a high priority in allocating limited federal funds available for increasing donations," Schwab said. Only "a small number of people who are donors actually die in states they don't live in, so the need for a national registry is not as strong as you would think."

In addition to studying ways to help those in need of transplants, the federal government oversees the Organ Procurement and Transplantation Network, which tracks people who need organ transplants and potential donors, said David Bowman, a spokesman for the Health Resources and Services Administration.

"We are currently exploring ... how the federal government can best provide assistance and leadership in this area," Bowman said.

California's roaring start

California has a rare need for such a service given that one in every five U.S. transplants occurs in the state — the country's most populous. Until now, the pink dot had been the only way to identify donors.

Gov. Arnold Schwarzenegger declared April 4, the day the online donor registry was launched, Donate Life California Registry Day. The governor, who had a heart valve transplant, said in a statement, "The demand for organs is greater today than ever before."

Later this year, California officials hope to pass legislation that would allow the state's Department of Motor Vehicles to track people who want to be donors. DMV officials would submit the information weekly to an electronic database, which would provide a mechanism in addition to self-registering to enter names into the online registry. In the meantime, the DMV is providing information about registering online when people apply for or renew their driver's licenses.

"California has never had a donor registry, but the vast majority of its citizens believe we do," said Tom Mone, chief executive officer of OneLegacy, a public/private partnership in California that aims to make donor registration as simple as going online.

The new system is off to a roaring start. In the first month, more than 45,000 potential donors registered online using electronic signatures. After signing up, donors can send e-mail messages through the system to notify family members of their wishes.

Through a public-awareness campaign, California officials hope to get a large percentage of the state's 25 million licensed drivers to sign up online at www.donatelifecalifornia.org. OneLegacy runs the database at an estimated cost of $50,000.

Meanwhile, more than 18,000 Californians in need of transplants wait for the news that a lifesaving organ is available. California officials hope to reduce that number through a massive advertising campaign and by reminding potential donors to register online. They also want to teach people that a single donor can provide tissue and organs — eyes, livers, kidneys and lungs, for example — that could save or enhance someone else's life.

California's system will have to provide organs at the right time. "With a registry has to come some really good oversight," said Catherine Burch Graham, director of communications at LifeGift, a Houston-based organ donation center that covers 109 counties and 200 hospitals in Texas. Officials are considering whether to start an online registry.

Seeking standards

Despite California's new system, the state faces the same problems that affect other states: little funding for an integrated organ donor system. Regional donor registries exist, but finding available donors in another region is difficult, so potential recipients are on multiple waiting lists.

Several private-sector vendors offer services to help facilitate matches. One company working to connect donors and transplant patients is Statline, a Denver-based communications center with a database of more than 20 million potential organ donors.

The company centralizes death calls that hospitals and organ donor organizations receive and then reports the potential for donors. When Statline receives calls, company employees enter the deceased person's name into Statline's system. If a donor card has been signed, they notify a local communications center.

"What we do with registries is help automate them," said Karen Bauer, Statline's director of business development. "When someone is listed as a donor, that data is sent to us. When someone dies, we interface it with our database."

Bauer said family members often don't know that a loved one wants to be an organ donor. "And if they were on the fence, they will honor the donor's wishes," she said.

Donor registry programs vary dramatically because nationwide standards don't exist, said Tracy Schmidt, president of Intermountain Donor Services, a nonprofit organization that reaches Utah, Idaho and parts of Wyoming. For example, Arizona does not have a state-sponsored system. New Mexico, Minnesota, North Dakota and South Dakota don't have online registries, but information is available at the states' DMVs. When someone dies, hospital officials ask the DMVs to search their databases to determine if the deceased registered as an organ donor on a driver's license application. That process takes precious time.

"My definition of a registry is that you have captured an individual's intent to donate and the state can document your gift," Schmidt said.

Despite all the pitfalls, technology has dramatically improved the donor system by making it easier to match donors and transplant patients, Schmidt said. "More states are looking into online registries," he said. "There are other states that are in the process of developing online registries."

Technology is definitely helping, said Fen Evans, senior project manager at Inetz, a company based in Salt Lake City that has developed donor databases for Utah, Idaho, Oklahoma and now California.

"It's increasing the numbers of people registering to donate by a considerable amount," Evans said.

Some organ donor coordinators in those states can tap into a donor registry and local DMV records to match the names of fatal-accident victims. Developers considered security and donor privacy when they developed the online systems. For example, the system does not identify donors by their Social Security numbers, and specialists routinely test the system to make sure it is hack-proof, Evans said.

In March, members of the Organ Procurement and Transplantation Network held a technology conference in San Antonio to develop standards for a data model to communicate donor information, discuss data privacy and security issues, and exchange information for obtaining Internet access in donor hospitals. None of those issues are simple, experts say.

Schwab said people working to improve the system know that automation has an important role as technology becomes more commonplace in the field of medicine.

For example, medical employees with handheld computers can gather information more quickly and immediately send it to transplant surgeons. The organ procurement community is evaluating IT applications, particularly clinical ones, Schwab said.

Chris Gonzalez of Los Angeles knows that time cannot be wasted. Her husband, Gaston, is waiting for a kidney. "I didn't realize how long it would take," said Gonzalez, a volunteer at OneLegacy. "The waiting time for a kidney is almost seven years." Her husband registered online in California and hopes his number will come up.

"I just hope we can make it," she said. "It's hard to see someone I love disintegrating. Nothing is more beautiful than when you can put together a donor family and a recipient."

Technology as a lifesaver

Officials at the Organ Procurement and Transplantation Network held a technology conference and issued a series of recommendations to help make matching organ donors and people in need easier using information technology.

They recommended:

  • Developing a standardized donor dataset.
  • Adopting a hybrid data model that captures information at hospital bedsides.
  • Using the network as the repository of organ donor data.
  • Integrating handheld technology into the donor system.
  • Creating a single display of donor information with a common language and appearance that is accessible by all organ procurement organizations, doctors and tissue banks.
  • Automating multiple organ offers.
  • Notifying centers of all of the listed patients and what organ is needed.
  • Source: Organ Procurement and Transplantation Network

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