The Effects of Animations and Multimedia Messages on Public Engagement in Precision Medicine: Assessment of Moderation and Mediation.

Public participation in precision medicine (PM) research is essential to achieving effective health care but has been impeded by a lack of awareness and basic knowledge. There is a critical need for educational materials that can clearly explain PM to foster involvement. This randomized controlled trial with a posttest-only control group design aims to assess the effects of educational messages delivered through animations relative to live-action videos and leaflets on intentions of involvement in PM research. Knowledge as the moderator and four mediators (engagement, vividness, trustworthiness, and cognitive value) of the intended effects were also evaluated. A total of 326 U.S. adults were sampled from Amazon Mechanical Turk. Among participants with less knowledge about PM, animations produced stronger information-seeking intentions and willingness to participate than leaflets. The effects of three message modalities were not significantly different among average and highly knowledgeable participants. Engagement and vividness mediated the effects of animations relative to two other message modalities. Trustworthiness and cognitive value mediated the effects of animations relative to live-action videos. Overall, animations can be an effective communication strategy to motivate involvement in PM but its effectiveness could decline as knowledge increases. The explanations and implications of the findings were discussed.

The role of perceived expertise and trustworthiness in research study and clinical trial recruitment: Perspectives of clinical research coordinators and African American and Black Caribbean patients.

This study investigates the role of source credibility on minority participant recruitment, particularly African American and Black Caribbean patients. A total of nine focus groups (N = 48 participants) were conducted with both patient groups and clinical research coordinators (CRCs). Using the elaboration likelihood model as a guiding framework for analysis, this study found that the credibility of research coordinators (or other professionals who recruit for research studies and clinical trials) was instrumental in shaping attitudes of prospective participants. The perspectives of patients and CRCs aligned closely, with few exceptions. For both groups, professionalism and professional displays (clothing, institutional artifacts) enhanced perceived expertise, a core component of credibility. Trustworthiness, another important component of credibility, was fostered through homophily between recruiter and patient, expressions of goodwill and assuaging anxiety about CRCs' financial motivations for recruitment. Additionally, CRCs believed that credibility was supported when CRCs could emphasize transparency and truthfulness in communication. The importance of these findings for the development of empirically-based training programs to improve communication practices in recruitment contexts is discussed.

Reducing Health Disparities Among African American and Black Caribbean Patients by Improving the Communication Practices of Clinical Research Coordinators.

This manuscript focuses on the communication factors that affect the willingness of African Americans and Black Caribbean patients to participate in clinical trials and research studies. Low rates of research participation by members of communities of color have long been linked to health disparities. While there are many factors that contribute to low rates of accrual of African American and Black patients to clinical trials, a lack of attention to communication factors that enhance or inhibit the recruitment process is central to the problem. In this study, we describe results from the analysis of six focus groups (N = 31) consisting of African American (k = 3) and Black Caribbean (k = 3) participants. Our analyses focus on verbal and nonverbal communication behaviors and how they affect participants' willingness to participate in clinical trials. Specifically, when clinical research coordinators (CRCs) had a professional appearance, made the effort to explain a study in detail, made eye contact, took the time to listen and answer questions patiently, and gave the sense that the CRC was being truthful and transparent, patients felt respected and valued. Additionally, participants emphasized the importance of the process of developing and maintaining a trusting relationship between study participants and CRCs. The results of this study will be used to develop a clinical trial communication training program designed to enhance the communication skills of clinical research coordinators who discuss research participation with African American and Caribbean Black patients.

Community-Based Participatory Research (CBPR) to Enhance Participation of Racial/Ethnic Minorities in Clinical Trials: A 10-Year Systematic Review.

There has not been a significant improvement in the rate of clinical trial accrual in more than 20 years. Worse, the challenge of inadequate representation among racial and ethnic minorities also persists, deepening disparities in health. Community-Based Participatory Research (CBPR) is a participatory communication method that centers on effective dialogue between researchers and community stakeholders with the goal of creating an equitable partnership for health and social change. The objective of the current study was to provide an update since a systematic review in 2012, on the current status of the empirical research, with a particular focus on the elements of CBPR methods used to improve the rate of accrual of members of racial and ethnic minority communities for clinical trials. Our systematic review found a large increase in the number of CBPR related studies and studies related to racial and ethnic representation in research. More than 85% of studies employing CBPR methods saw statistically positive outcomes. Specifically, the elements of CBPR that are associated with these positive outcomes include community partner participation in (1) a study advisory committee, (2) data collection, (3) the development of interventions, and (4) participant recruitment. However, the results of our study indicate that researchers need to be more transparent about the extent of community participation as well as more thoroughly and accurately describe the nature of the partnership with members of minority communities in order to build upon the scientific literature on community-engaged methods.

Underrepresentation of Hispanics and Other Minorities in Clinical Trials: Recruiters' Perspectives.

Clinical trials and research studies often fail to recruit participants from the minorities, hampering the generalizability of results. In order to mitigate this problem, the present study investigated how race/ethnicity affects the process of recruiting people from racial and ethnic minority groups, by conducting 11 focus groups with professional recruiters. Several themes emerged, such as how to adapt to potential participants' language competency and literacy levels, the importance to engage in culturally appropriate verbal and non-verbal communication, and to establish a sense of homophily between recruiters and patients. In addition, recruiters pointed out possible solutions to accommodate socioeconomic concerns, to adapt to contextual factors-including immigration status-and ultimately to respond to potential participants' mistrust of medical research. These findings are discussed, and future recommendations are provided.

The Role of Nonverbal Communication Behaviors in Clinical Trial and Research Study Recruitment.

Few studies have examined the communication behaviors of those who recruit for clinical trials and research studies, particularly of nonmedical professionals who often do the bulk of recruiting. This focus-group study of 63 recruiters analyzes the ways in which nonverbal communication behaviors support the process of recruitment, using the lens of communication accommodation theory. Results indicate that recruiters first "read" potential study participants' nonverbal communication for clues about their state of mind, then use nonverbal communication to achieve a sense of convergence. Specific nonverbal communication behaviors were discussed by recruiters, including smiling, variations in the use of voice, adjusting body position, the appropriate use of physical touch, the management of eye contact, and the effect of clothing and physical appearance. Implications for recruitment practice are discussed.

Does Donor Status, Race, and Biological Sex Predict Organ Donor Registration Barriers?

PURPOSE: The purpose of the current study was to examine differences among bodily integrity, disgust, medical mistrust, and superstition among African Americans, Caucasians, and Latinos; females and males; and registered organ donors and non-registered potential donors. METHODS: A random digit dialing phone survey was utilized to garner information pertaining to organ donation beliefs among African American (n = 200), Caucasian (n = 200), and Latino (n = 200) Chicago residents. More specifically, participants responded to measures of bodily integrity, disgust, medical mistrust, and superstition, organ donor registration status, among others. RESULTS: The results indicated that African American and Latino participants were less likely to be registered organ donors than Caucasians (p < .001). In general, females maintained fewer barriers than males with respect to bodily integrity (p < .05), disgust (p = .01), and superstition (p = .01). With respect to organ donation barriers, bodily integrity (p < .0001) emerged as a central concern among those surveyed. CONCLUSION: This study highlights the significance of audience segmentation when promoting posthumous organ and tissue donation. Specifically, the results stress the importance of constructing distinct messages to non-registered potential donors compared to messages delivered to registered donors. Moreover, different barriers surfaced among females and males as well as among African American, Caucasian, and Latino residents. It is clear that a one size fits all approach will likely not work when promoting organ and tissue donation.

Perceptions about organ donation among African American, Hispanic, and white high school students.

We applied the Health Belief Model (HBM) to better understand perceptions of organ donation among African American, Hispanic, and White high school students. We conducted 14 focus groups with 18-year-old students to identify strategies to reach this audience when promoting the First-Person Consent Registry (FPCR) for organ donation. We found that African American, Hispanic, and White high school students are largely unaware of the need for organ donors, and are unfamiliar with how to join the FPCR. Participants identified more barriers to joining the FPCR than benefits. Two aspects of self-efficacy emerged related to joining the FPCR: decisional and task efficacy. Overall, few differences were found with respect to organ donation myths across the three ethnic groups. The results are discussed, with an emphasis on how the findings compare and contrast with previous organ donation research. We focus on message design and dissemination strategies for practitioners targeting 18-year-old high school students with organ donation promotional materials.

When families talk: applying interpretative phenomenological analysis to African American families discussing their awareness, commitment, and knowledge of organ donation.

This paper applies interpretative phenomenological analysis as a tool to understand ways African American families discuss and make sense of their knowledge, awareness, and commitment of the organ donation process. African American families (n = 20) participated in self-directed conversations based on the organ donor model, which is grounded in the theory of reasoned action and the theory of motivated information management. Results indicate that the media strongly influences an individual's willingness to participate in the organ donation process and their commitment to further discuss their decisions with close family members. Greater attention should be given to cultural-specific campaigns to increase the number of African American donors.

Saving lives branch by branch: the effectiveness of driver licensing bureau campaigns to promote organ donor registry sign-ups to African Americans in Michigan.

African Americans are disproportionately represented on the national waiting list for organ transplantation. Promoting organ donor registries is one way to improve the possibility that those on the waiting list can receive a life saving transplant. Driver licensing bureaus have been suggested as an efficient site for campaigns aimed at increasing state-based registry sign-ups. Previous research has suggested these campaigns work well for Caucasian populations, but there is less evidence supporting this approach in more diverse populations. To determine whether more diverse populations demonstrate similar sign-up rates when receiving a driver licensing bureau campaign, the present study used a previously successful strategy as the basis for designing and disseminating materials that would appeal to African Americans and Caucasians in two diverse counties in the state of Michigan (Wayne and Oakland Counties). Communication design and media priming served as the theoretical foundations of a three-prong campaign that used mass media, point-of-decision, and interpersonal components. Results from countywide and zip code data indicate that the campaign greatly increased sign-ups among African American residents (700% increase above baseline). Although more Caucasians still signed up than did African Americans, the inclusion of an interpersonal component resulted in similar numbers of registry sign-ups during 2 intervention months. The study provides evidence supporting the use of driver licensing bureau campaigns to promote organ donation registries to diverse audiences.

Many facets of reluctance: African Americans and the decision (not) to donate organs.

Although the body of research on African Americans and organ donation continues to grow, the literature still suffers from a lack of reliance on theory to guide research as well as a surfeit of advanced statistical analytical strategies. A more sophisticated approach to understanding the barriers and facilitating factors that African Americans experience in the process of making the decision to become potential organ donors would yield more sound campaign strategies to increase donation. In this study, a sample of 310 African-American adult members of the NAACP was surveyed about their attitudes, knowledge and beliefs about organ donation. Logistic regression demonstrated that the level of knowledge, attitudes, social norms and altruism resulted in correct classification of organ donor card status in 69.3% of cases. When variables such as medical mistrust, bodily integrity and religiosity were added, an even more powerful model resulted, with 73.2% of the cases correctly classified according to organ donor card status. Recommendations for campaigns targeting African Americans' willingness to donate organs are offered.

African Americans' knowledge about organ donation: closing the gap with more effective persuasive message strategies.

In spite of increasing interest in the area of African Americans' willingness to donate organs, little empirical knowledge exists that can be used to create more effective public communication campaigns. In this study, 310 African Americans responded to seven knowledge items (based on myths and misconceptions about organ donation) shown in past studies to discriminate between donors and nondonors. The rate of accurate responses varied from 33% to 78% to individual knowledge items. Beliefs that the organ allocation system is inequitable (favoring whites and the rich) and the belief that donors pay extra medical bills strongly distinguished donors from nondonors. In addition, the information sources reported by African Americans willing to donate were more likely to include family members. Implications of these findings to the development of more effective organ donation campaigns targeting African Americans are offered.