February 1, 2010

Kidney donor study: How do African-Americans access health info online?

Laura Taylor, an assistant professor in the School of Nursing’s Department of Health Systems and Outcomes, is studying how living-kidney donors and caregivers gain support in the organ donation process.

The $450,000 two-year grant she received from the National Institutes of Health’s National Institute of Nursing Research will expand Taylor’s Living Donor Information Network for Caregiving, known as LINC, a Johns Hopkins–based Web site for living-kidney donors and their “informal caregivers,” who are usually relatives. Taylor said she hopes to gain critical insight into how African-Americans in particular utilize the Internet to gain information and seek emotional support.

Taylor has worked at The Johns Hopkins Hospital since 1987 and since 1994 has cared for patients who have undergone liver, kidney, and pancreas transplantation. For the past decade, she has studied the linkage between organ donors, information technology and donors’ trust in the medical staff.

In the randomized controlled trial, donor candidates and their informal caregivers will be invited to join LINC, which features a discussion board, PDF files on kidney donation, video clips and podcasts. The initiative was prompted, in part, by the fact that African-Americans constitute the majority of patients with end-stage renal disease but less than 12 percent of the living-kidney donors last year. A 2007 Pew Internet study revealed differences in African-Americans’ and Caucasians’ use of the Internet to access health information.

“What we really don’t know is, What are African-Americans seeking on the Internet?” Taylor said. “I hope to create educational resources that’ll best meet the needs of the African-American population. Maybe, then, more African-Americans will consider living-kidney donations because they feel more confident in the information they’re receiving.”