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.

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.

Tailored Messages About Research Participation: Using an Interactive Information Aid to Improve Study Recruitment.

After a diagnosis of cancer (or other serious disease), patients may be asked to consider joining a clinical trial. Because most people are unfamiliar with the scientific concepts that are necessary to the provision of meaningful informed consent, patient education is necessary. Increasing knowledge alone is not sufficient; understanding how clinical trial participation aligns with personal circumstances and knowledge is central to the decision-making process. In this study, 302 cancer patients and survivors evaluated an interactive information aid (IA) designed to inform their decision to join a research study or clinical trial by providing tailored information to patients' responses to questions pertaining to seven key barriers or facilitators of clinical trial participation. The development of the IA was done with input from the authors' Clinical Translational Science Institute; linked components of the IA were vetted by members and leaders of the institution's NCI-designated comprehensive cancer center. Results of the study indicated that the information aid was successful in significantly reducing fears and increasing knowledge, attitudes, perceived behavioral control, and behavioral intentions about research participation relative to a control condition. Thus, an interactive information aid that provides information that is responsive to patients' values, knowledge, and personal circumstances can help patients to be better prepared to consider a decision about research participation.

Acceptability of a multicomponent, community-based, HPV self-test intervention among Jamaican women.

Jamaican women do not participate in routine Pap test screening as recommended, despite the availability of free Pap test services at community clinics. This low uptake has been associated with cultural and structural barriers such as limited knowledge and awareness, fear of pain associated with Pap tests, fear of diagnosis, modesty or self-consciousness, medical mistrust, and discontent with healthcare services. This study suggests that a multicomponent, community-based intervention that includes education and self-testing for the virus that causes cervical cancer (i.e., Human Papillomavirus, HPV) might increase screening rates. Community outreach workers were hired and recruited 163 women from two low socioeconomic status communities in Kingston, aged 30 to 65 years, and who had not had a Pap test in at least 3 years, to use an HPV self-test kit. Almost all the women (95.6%) used and returned the kit and reported in structured interviews that it was easy to use and preferable to visiting a doctor. Paired samples t-tests revealed that participants perceived higher threat of cervical cancer, greater susceptibility to cancer, greater sense of self-efficacy, and more positive screening social norms at post-test than at pretest. Among returners, 22% had an oncogenic HPV type detected in their sample. Findings demonstrate high acceptability of the HPV self-test among Jamaican women and, therefore, the potential of HPV self-test tools to increase screening uptake. Community-based approaches to disseminate this tool, such as outreach workers and educational small group sessions, appear to be culturally appropriate and effective in this context.

Evaluating Culturally-targeted Fear Appeal Messages for HPV Self-Sampling among Jamaican Women: A Qualitative Formative Research Study.

Despite the disproportionate burden of cervical cancer among Caribbean women, evaluations of targeted communication interventions to increase screening behaviors are sparsely represented in extant literature. Informed by data on the cognitive, affective and sociocultural factors associated with low cervical screening in the English-speaking island of Jamaica, the current study aimed to explore how theory-based message design, coupled with innovative solutions, might increase screening. In this formative research study, we first described the process used to develop culturally-targeted fear appeal messages embedded within an HPV self-sampling kit developed by the researchers. Then, we shared the results of an evaluation of the kit, which was reviewed by 36 Jamaican women in 8 focus groups, to understand the potential impact of the messages and the utility of HPV self-sampling to increase screening behaviors in this population. The results provide data on effective messages for cervical cancer prevention among Jamaican women, which may be further applicable to underscreened women in the English-speaking Caribbean. Additionally, results from this research suggest support for HPV self-sampling to address salient cultural and structural barriers to screening, which provides an impetus for experimental research in message design to inform policy and practice.

What Motivates You to Share? The Effect of Interactive Tailored Information Aids on Information Sharing about Clinical Trials.

Cancer patients learn about research studies outside of the clinical environment, including websites, print and online advertisements, and interpersonal interactions. When cancer patients share credible information about clinical trials, they also frequently help clarify misunderstandings that may exist in their social networks. The present study investigated how an interactive tailored information aid on clinical trial participation motivated patients' information sharing behaviors. In this study of 312 cancer patients and survivors, an interactive tailored information aid improved patients' likelihood of sharing online and offline information more than a non-interactive tool. Information sharing was directly predicted by cognitive absorption and perceived visual informativeness. In addition, perceived utility and ease of use indirectly impact information sharing positively through the antecedent factors of user engagement and design esthetics. Education level further moderated this effect; information sharing was higher among patients with more education. The implications of these findings are discussed and recommendations for future research are provided.

An Evaluation of Clinical Trial Multimedia to Support Hispanic Cancer Patients' Informational and Decision-Making Needs.

The inclusion of diverse populations in clinical trial research is a social justice imperative. Creating the communicative tools that can support cancer patients across varied cultural backgrounds in processing complex clinical trial information, to achieve informed consent, has been a challenge. This study sought to evaluate specific clinical trial multimedia-a website, four animations, and a decision aid-to meet the decision-making and informational needs of Hispanic patients. The multimedia content was positively evaluated by Hispanic cancer patients. However, the discussions also yielded important steps for culturally adapting these tools to account for particular informational needs and cultural values that would be important to incorporate into these, and future, clinical trial multimedia interventions that target Hispanic populations.

A Comparison of Metaphor Modality and Appeals in the Context of Skin Cancer Prevention.

Health communication experts continually seek out effective strategies to strengthen persuasive campaigns. While there is evidence that verbal metaphors can improve persuasion, little attention has been given to the potential of visual metaphors to enhance health communication effects. To fill this gap, an experiment was conducted to test the effects of metaphor modality (visual vs. verbal) and type of fear appeal used (death-based or appearance-based) on skin protection intentions. Additionally, the moderating role of an individual characteristic (need for cognition), and the mediating role of two processing outcomes (message elaboration and perceived message effectiveness) were examined. Results indicated that there was no significant difference between the main effects of metaphor modality and type of fear appeal, but these message features interacted making the death-based fear appeal the most effective strategy. Need for cognition directly affected perceptions of effectiveness but did not affect skin protection intentions nor message elaboration. Of the two message processing outcomes examined, only perceived message effectiveness mediated the relationship between metaphor modality and skin protection intentions. Theoretical explanations and practical implications are discussed.

Animations about Clinical Trial Participation for Cancer Patients and Survivors.

Communicating about clinical trials and medical research is challenging. An appropriate communication is essential to reduce some of the barriers associated with poor patients' enrollment in clinical trials and with patients' uninformed consent or uninformed refusal. An experiment was conducted to assess the effects of educational animations compared to brochures with and without visuals, and with the materials currently used by the NIH. These materials focused on explaining placebos, randomization, the steps necessary to enroll in a clinical trial, and how and by who patients' protection is ensured. A total of 1194 cancer patients and survivors completed this 4 by 4 experiment through a Qualtrics panel. The findings showed that animations improved participants knowledge about and attitudes toward clinical trials and were more effective than brochures presenting information from the NIH, especially for those individuals with low motivation and low ability to comprehend health-related information. Several evidence-based theoretical explanations of the functioning of animations are provided.

A Content Analysis of the Discussions about Clinical Trials on A Cancer-dedicated Online Forum.

Enrollment rates of cancer clinical trials remain low, affecting the delivery of effective medical treatments. Recent research has documented common factors affecting trial participation, but to improve these efforts more studies are needed to further understand specific concerns and issues of potential participants in multiple contexts. Forums and other online peer-to-peer health communities are crucial to the coping and survivorship of cancer patients. Online health communities will offer valuable information to understand how patients discuss perceptions, motivations, and challenges associated with clinical trial participation, and to understand how patients provide support to each other. The present study conducted a content analysis of 270 posts shared by 154 unique users between August 2017 and January 2018 on a popular online breast cancer forum. The analysis identifies common characteristics of patient users, salient post themes, perceived barriers, emotions, and misconceptions regarding clinical trial participation. The study findings are generally consistent with previous studies but provide in-depth insights into online support between cancer patients about clinical trial participation. Implications for practice and future research are also discussed.

Ready to Make A Decision: A Model of Informational Aids to Improve Informed Participation in Clinical Trial Research.

Enrollment rates for cancer clinical trials remain low, affecting the generalizability of new treatments. Research shows that many patients face significant challenges in understanding basic clinical trial vocabulary and making informed decisions about participation. Informational aids (IA) are developed to address these challenges and support decision making of cancer clinical trial participation. The present study proposed and tested a structural path model to explain the efficacy of three (i.e., interactive, non-interactive, non-cancer control) IAs. The results revealed that clinical trial participation intention was associated with attitudes and social constructs (i.e., social norm, social sharing, and cues to action). Ease of use, rather than knowledge, was the primary communication feature of IA that influenced the outcome variables. The path relations linking messages features, mediators, and outcome variables were different across all three IAs. The results therefore provide theoretical and practical implications for the use and development of IAs to support clinical trial accrual.

The Invisible Danger of Transferring Toxins with Bunker Gear: A Theory-Based Intervention to Increase Postfire Decontamination to Reduce Cancer Risk in Firefighters.

Studies show significant association between cancer risk and being a firefighter. After exposure to even routine firefighting, firefighters' bunker gear often contains carcinogens that may be absorbed through contact or inhaled through off-gassing, thereby increasing cancer risk. Awareness of increased cancer risk has given rise to policies and practices focused on gear cleaning and decontamination processes to decrease risk; yet, these efforts are in their infancy and tend to be somewhat piecemeal in nature. This study presents a theory-based communication intervention tailored to the unique context of high-reliability organizations (HROs). The intervention focused on increasing postfire decontamination behaviors to reduce exposure to carcinogens among firefighters. Results of the intervention across 14 fire stations from 2 fire departments in South Florida show significant increases in attitudes, norms, and self-efficacy, decreases in perceived barriers, and increased intention to engage in decontamination processes. While the intervention was highly successful in both fire departments, there were significant differences in between organizations; attitudes perceived norms, and barriers to gear cleaning remained significantly different. This highlights the need to examine the specific context of the organization in designing interventions. In line with previous research on HROs, regression models showed that norms and self-efficacy are the strongest predictors of current behavior. However, postintervention, attitudes emerge as the strongest predictor of future behavior. The results of this study provide valuable evidence for utilizing theoretical elements in message design for interventions in HROs, and of the importance of designing communication for specific sites of intervention.

Firefighter attitudes, norms, beliefs, barriers, and behaviors toward post-fire decontamination processes in an era of increased cancer risk.

Firefighters are exposed to carcinogens such as volatile organic compounds (VOCs) and polycyclic aromatic hydrocarbons (PAHs) during fires and from their personal protective equipment (PPE). Recent research has shown that decontamination processes can reduce contamination on both gear and skin. While firefighter cultures that honor dirty gear are changing, little is known about current attitudes and behaviors toward decontamination in the fire service. Four hundred eighty-five firefighters from four departments completed surveys about their attitudes, beliefs, perceived norms, barriers, and behaviors toward post-fire decontamination processes. Overall, firefighters reported positive attitudes, beliefs, and perceived norms about decontamination, but showering after a fire was the only decontamination process that occurred regularly, with field decontamination, use of cleansing wipes, routine gear cleaning, and other behaviors all occurring less frequently. Firefighters reported time and concerns over wet gear as barriers to decontamination.

Firefighter perceptions of cancer risk: Results of a qualitative study.

BACKGROUND: Recent epidemiological research on firefighters indicates an increased incidence of specific types of cancer. Intervention is needed in the fire service yet little is known about how firefighters perceive their cancer risk. METHODS: Participant observation (150 h, n = 100) and focus group (n = 17) data were collected from 15 fire stations in South Florida. Firefighters had at least 3 years of experience, ranks included drivers, captains, lieutenants, and specialty captains, with a median age of 51 years. RESULTS: From the qualitative analysis, two major categories (direct and indirect factors) for cancer risks emerged based on participant notions of cancer risk and cancer prevention behaviors as they relate to firefighting. CONCLUSIONS: Firefighters perceive cancer risks as the result of performing essential job tasks and from indirect job factors related to being a firefighter. The two categories of cancer risks suggest different points of entry for intervention.

"You Need to Be a Good Listener": Recruiters' Use of Relational Communication Behaviors to Enhance Clinical Trial and Research Study Accrual.

Medical and research professionals who discuss clinical trials and research studies with potential participants face an often daunting challenge, particularly when recruiting from minority and underserved populations. This study reports on findings from a focus group study of 63 research coordinators, study nurses, professional recruiters, and other professionals in Indianapolis, IN and Miami, FL who work to recruit from minority and underserved populations. These professionals discussed the importance of creating a sense of connection with potential participants as part of the recruitment and retention process. Building a relationship, however fleeting, involved a number of concrete behaviors, including listening to personal information, expressing empathy, and then providing reciprocal self-disclosures; having repeated contact, usually by working in the same environment over an extended period of time; demonstrating respect through politeness and the use of honorifics; going the extra mile for participants; offering flexibility in scheduling follow-up appointments; and creating a sense of personal and community trust by being truthful. The implications of these findings for clinical trial and research study accrual are discussed.

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.

Clinical Trial and Research Study Recruiters' Verbal Communication Behaviors.

The lack of accrual to research studies and clinical trials is a persistent problem with serious consequences: Advances in medical science depend on the participation of large numbers of people, including members of minority and underserved populations. The current study examines a critical determinant of accrual: the approach of patients by professional recruiters who request participation in research studies and clinical trials. Findings indicate that recruiters use a number of verbal strategies in the communication process, including translating study information (such as simplifying, using examples, and substituting specific difficult or problematic words), using linguistic reframing or metaphors, balancing discussions of research participation risks with benefits, and encouraging potential participants to ask questions. The identification of these verbal strategies can form the basis of new communication protocols that will help medical and nonmedical professionals communicate more clearly and effectively with patients and other potential participants about research studies and clinical trials, which should lead to increased accrual in the future.

An examination of three theoretical models to explain the organ donation attitude--registration discrepancy among mature adults.

An inconsistency in the research indicates positive attitudes toward organ donation do not map reliably onto organ donor registrations. Various models have sought to explain this inconsistency and the current analysis formally compared three models: the Bystander Intervention Model (BIM), the Organ Donor Model (ODM), and Vested Interest Theory (VIT). Mature (N = 688) adults between the ages of 50 to 64 years completed surveys related to organ donation. Results revealed that VIT accounted for the most variance in organ donation registrations followed by the BIM and ODM. The discussion emphasizes the importance of employing theories to explain a phenomenon as well as the practical implications of the findings.

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.