Internet takes new role in organ donor program

As part of a national program to increase the number of people registering to be organ donors, the Department of Health and Human Services last month awarded a $900,000 grant to a Michigan-based health organization to take a 4-year-old World Wide Web site that provides background information about organ donation and enhance it to recruit and register organ donors.

With the three-year grant from the Health Resources and Services Administration (HRSA), the Transplantation Society of Michigan plans to enhance its Web site (www.transweb.org) to focus on the families of individuals signing up as organ donors.

New features will include an automated greeting card system that will enable people who decide to be donors to mail, traditionally or electronically, a notice to their family making them aware of his decision. The site also will provide a feature that presents families with various scenarios they might encounter during the organ donation process.

"Time is so important, and showing the family members that the person intended to donate would lessen their fears and inhibitions," said John Nelson, director of the office of special programs at HRSA.TransWeb, which was launched in January 1995, was the nation's first comprehensive organ transplant information Web site, said editor and Webmaster Eleanor Jones. It contains about 10,000 pages of information supplied by doctors, medical personnel and other volunteers and receives about 500,000 hits per month.

"Two years ago, we got the money to create the educational journey to take people through a kidney transplant from organ failure to transplant to life after the procedure," Jones said. "The new grant will allow us to create a new path from the donor families' point of view that intersects [with the recipients'], which will illustrate what the whole [transplant] experience would be like."

Users can take a pre-test assessing their knowledge about organ donation, view a basic demonstration to gauge their attitudes on a number of organ donation subjects and then take a post-test of about five questions that leads up to the choice of signing up for Michigan's online donor registry, Jones said. If a person chooses to register, a postcard can be printed out or electronically sent to the user's family, notifying it of the donor's wishes.

"The whole thing is self-paced, and people can go into as much or little depth as they like and take as much time as they want," Jones said.

The HRSA awards are part of the Clinton administration's National Organ and Tissue Donation Initiative, launched by Vice President Al Gore and HHS Secretary Donna Shalala in December 1997 to alleviate the U.S. donor shortage.

The grant program requires applicants to be part of a consortium consisting of at least one agency with transplant experience and one with research expertise. The grantees are required to evaluate the effectiveness of strategies in increasing organ procurement, improving consent rates for donation and increasing the number of people who decide to become organ donors and notify their families of those wishes.

More information is available at www.organdonor.gov.