Investigation of Ethnic Differences in Willingness to Enroll in a Rehabilitation Research Registry

Abstract

Ethnicity was not found to be a predictor of willingness to enroll in a study registry. A greater belief of gain and less concern over privacy were associated with willingness to enroll, even after controlling for age, education, facility, and ethnic group.

Joint replacement recipients’ post-surgery views about health information privacy and registry participation

“…The evidence regarding the relationship between demographic characteristics, health information privacy views and willingness to participate in registries is mixed. One study was identified that examined demographic and clinical variables as well as privacy concerns in predicting willingness to enroll in a cognitive rehabilitation research registry, finding that those who were more concerned about registry privacy were less likely to consent to join the registry, but this study was not conducted with patients after rehabilitation [19]. Similarly, a study that found that non-white women and men were less likely to participate in a family registry for breast cancer research, did not include a post-treatment group [18].…”

“…Three studies have been conducted that examined the characteristics of individuals agreeing to participate in patient registries [18][19][20]. More specifically, Phipps et al explored the role of patients' privacy concerns in relation to registry participation [19]. These studies did not include joint replacement recipients.…”

“…These studies suggest a level of uncertainty in how individuals will respond to requests to use their personal health information; one study also included a qualitative component, and found a lack of consistency about whether patients make a distinction between identifiable and non-identifiable health records [17]. Three studies have been conducted that examined the characteristics of individuals agreeing to participate in patient registries [18][19][20]. More specifically, Phipps et al explored the role of patients' privacy concerns in relation to registry participation [19].…”

Impact of Detailed Informed Consent on Research Subjects’ Participation: A Prospective, Randomized Trial

“…Several studies have previously identified factors that affect subject participation, including physician rapport, physician communication skills, socioeconomic status, expectation of benefit, monetary payments, investigator conflict of interest, and privacy (11)(12)(13)(14)(15). Informed consent for research is an important safeguard to the rights of human subjects.…”

“…XXXX has not set aside any funds for compensation for medical expenses or any other compensation for research-related injuries such as lost wages and/or direct or indirect losses. 14 …”