Another group of organ donation activities focuses on increasing donation rates or awareness in specific groups within the population as a whole. These "targeted populations" may comprise, for example, specific age groups, ethnic groups, or neighborhoods. For various reasons, organ donation behavior of these groups may differ from that of the general public, and therefore may benefit from organ donation programs tailored to meet their specific circumstances. Depending on the proximity of the evaluation measures to the goal of increasing organ donation, the evaluation of these programs can be challenging. The following three "targeted population" studies were presented at the conference.
Denise Kinder, Regional Manager of California Transplant Donor Network, presented a study on ways to increase consent rates among the Hispanic population. The study revealed a large difference in donation rates among Caucasians and other ethnic groups in Fresno, California. In 1996 the Caucasian consent rate was 70% compared to 24% among Hispanics. The initial goal of the study was to determine the factors leading to lower consent rates among Hispanics, and then to use that information to increase consent rates. A survey of 520 Hispanic households indicated that non-assimilated Hispanics had the lowest consent rate, and that factors such as utilizing the language spoken at home, using trusted messengers from the community, and honoring families that have donated in the past could play roles in increasing consent rates. The researchers used this information to disseminate organ donation literature and awareness campaigns. To evaluate the program, the study tracked every potential donor whether or not consent was given using a donor-tracking tool. This tool includes questions about the referral and request process, outcomes of the donation, and family disposition towards donation. At the end of the study, 10 out of 22, or 46% of potential Hispanic donors in the Fresno area gave consent, an increase of 92% over the previous year.
Jennie Perryman, Director of the Georgia Leadership Commission on Organ, Tissue, Blood and Marrow Donation, and Stephen Thomas, Assistant Professor and Director, Institute for Minority Health Research, Rollins School of Public Health of Emory University, presented a "conceptual project" intended to improve collaboration among blood, tissue, marrow, and organ donation organizations to create best practices guidelines for increasing donation, especially among the African-American population. The study calls for strategies to identify national scholars and hold hearings in which the public can voice concerns. The project aims to improve activities by starting with a "formative evaluation" to determine if the activity can be shown to influence a specific targeted audience prior to commencing the activity. Once an activity can be shown to influence a target population, a "summative evaluation" can be conducted to determine if the activity is effective in changing outcomes, e.g., organ donation rates.
- The success of the ICFA program in increasing organ donation will depend on the ages of their pre-need planning consumers, and whether or not the information will be passed to the consumers’ families, i.e., potentially younger relatives who may make more suitable organ donors in the event of a traumatic event. If the pre-need population is too old or otherwise not appropriate as organ donation candidates, e.g., because of disease, the success of the program in increasing organ donation rates may be limited.
- Although larger sample sizes are preferred, it is possible to derive meaningful findings from studies with smaller sample sizes using non-parametric statistics. Programs should collaborate with statisticians and other health services researchers to further refine the data analysis methods.
- For a program to be evaluated and demonstrated as effective, it must follow families through the entire utilization process to determine the relationship between those who signed a donor card or received organ donor literature and those who donated. Such longitudinal follow-up can be achieved in carefully defined populations.