What influences trust in and understanding of clinical trials? An analysis of information and communication technology use and online health behavior from the Health Information National Trends Survey.

BACKGROUND: Using information and communication technologies to seek, discuss, and share health-related information influences people's trust and knowledge of several health practices. However, we know little about the associations between individuals' information and communication technology use and their perceptions of trust and knowledge of clinical trials. Examining these associations may lead to the identification of target audiences and channels for developing effective educational interventions and campaigns about clinical trials. METHODS: In this study, we analyzed Health Information National Trends Survey data to document perceptions of clinical trial-related knowledge and trust that were recently added as questions in this annual national survey of US adults. We also examined correlates of these clinical trial perceptions that included sociodemographic factors and individuals' use of information and communication technologies to seek health information, discuss such information with their healthcare providers, and share the information in their network. RESULTS: More than 90% of participants had no or limited perceived knowledge about clinical trials. Knowledge was higher among those who seek or discuss health-related information online. Differences in perceived knowledge and trust emerged for some racial/ethnic subgroups and other demographic factors. Providers were considered the most trusted source of information (73.6%), followed by health organizations (19.4%) and social support (7.1%). Trust in health organizations compared to health providers was higher among those who used online resources to share health information online with others. Trust in social support was significantly higher among those who used information and communication technologies to communicate about health. CONCLUSION: Based on these findings, we recommend developing online resources about clinical trials to be distributed through social media. These resources should facilitate a dialogue and be targeted to several groups considering their information and communication technologies' use.

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.

Effects of Character Accent on Perceived Similarity, Transportation, and Narrative Persuasion.

Guided by narrative transportation theory and the social identity approach, this study examined the effects of character accent on perceived similarity, transportation, and narrative persuasion. Cigarette smokers from Kentucky (N = 492) listened to a first-person narrative about smoking-induced lung cancer. The character spoke either with a Southern American English (SAE; ingroup) or a General American English (GAE; outgroup) accent. Opposite to predictions, the GAE-accented character was perceived as more similar overall, engendered greater transportation, elevated lung cancer risk perceptions, and promoted higher intentions to quit smoking than the SAE-accented character. Consistent with predictions, the effects of character accent on risk perceptions and intentions to quit were mediated by perceived similarity and transportation. Taken together, these findings indicate that narrative character accent is a potent cue to similarity judgments, but that actual linguistic similarity is not isomorphic with perceived overall similarity. Theoretical and practical implications for narrative persuasion are discussed.

Improving African Americans' Intentions to Enroll in a Health Registry: Message Development and Evaluation.

African Americans' enrollment in health registries is low, negatively affecting their representation in clinical research. Young African Americans are particularly underrepresented. Because medical discoveries are typically based on findings from research that lacks minority representation, new treatments may not be equally effective with members of the African American community. This may further exacerbate health disparities. In this two-phase study, we first collected data from five focus groups to (a) investigate young African Americans' knowledge about and attitudes toward health registries and (b) explore their perceptions about current messages used to recruit participants into health registries. The findings from the first phase of our research showed that participants had limited awareness and understanding of health registries' functions and held negative attitudes toward research participation. In Phase 2, we conducted an experiment to compare the effects of a current message, a new message designed based on the findings from our Phase 1 study, and a control. Results showed mixed findings on the impact of the new targeted message. Based on the findings from both phases of this study, we present and discuss future strategies.

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.

Feel Worried, Overloaded, or Fatalistic? The Determinants of Cancer Uncertainty Management Preferences.

Uncertainty in the context of cancer involves a complex and conflicting decision-making process. Individual preferences of seeking or avoiding information in the decisions of maintaining, reducing, or increasing uncertainty often depend on key cancer-related beliefs. The present study investigates whether cancer worry (CW), information overload (CIO), or fatalism (CF) can predict four constructs of uncertainty management preferences - avoid to maintain hope, avoid insufficient information, seek to increase uncertainty, and seek to reduce uncertainty. A hybrid model with structural and measurement components was specified and tested. The model analysis shows that cancer-related beliefs influenced individuals' needs and preferences for uncertainty management through seeking or avoiding information. CW was positively related to all but avoiding insufficient information. CIO was positively associated with all four preferences. CF was only associated with avoiding to maintain uncertainty. Theoretical and practical implications were discussed.

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.

Who Is Scared of a Needle? An Exploration of Italian Children's Knowledge and Perceptions About the HPV Vaccine.

Receiving the HPV vaccine at a young age before being exposed to the virus is essential to improve HPV-related cancer prevention. In many countries in the world, like Italy, the HPV vaccine is offered free of charges to boys and girls aged 12-14. Despite this incentive, the HPV vaccine uptake in Italy remains low. Several interventions and campaigns have been implemented to educate parents and providers. However, children of 12-14 years old have been left out by prevention and education efforts. This study explored middle school children's knowledge and perceptions of the HPV virus and vaccine with the purpose to identify gaps and misperceptions and provide recommendations to develop educational interventions. A total of nine focus groups were conducted, and discussions were analyzed along with 171 anonymous questions collected from the children. Findings included a lack of knowledge of HPV prevention guidelines, negative emotions associated with both the HPV vaccine and vaccines in general, misperceptions between prevention and care, and the desire to receive specific information.

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.

HPV Vaccine Searches on Pinterest: Before and After Pinterest's Actions to Moderate Content.

Objectives. To compare how human papillomavirus (HPV) vaccination was portrayed on Pinterest before and after the platform acted to moderate vaccine-related search results to understand (1) what the information environment looked like previously and (2) whether Pinterest's policy decisions improved this environment in terms of sources and content.Methods. In this quantitative content analysis, we compared 2 samples of 500 HPV vaccine-focused Pinterest posts ("pins") collected before and after Pinterest's actions to provide more reliable vaccine-related information. Pins were based on search results and were analyzed using the Health Belief Model.Results. The majority of preaction search results leaned toward vaccine skepticism, specifically focused on perceived vaccine barriers. Few pins were published by public health-related Pinterest accounts. Postaction search results showed a significant shift to HPV vaccination benefits, and the number of pins by government or medical accounts increased. However, the proportion of pins in search results containing HPV content of any type was significantly lower.Conclusions. Pinterest's efforts to moderate vaccination discussions were largely successful. However, the ban also appeared to limit HPV vaccination search results overall, which may contribute to confusion or an information vacuum.

A Meta-analysis of Narrative Game-based Interventions for Promoting Healthy Behaviors.

Health interventions that use serious games have become increasingly popular. However, many of these games have been designed with few immersive game features which would improve users' engagement with the persuasive messages. To address this issue, researchers have incorporated narrative elements in games to facilitate message processing and enhance behavioral change. There have been theoretical debates about whether narratives benefit these interventions; empirical evidences for their effects are slightly mixed. This meta-analysis provides a deeper understanding of the overall impact of narrative game-based interventions on health-related behaviors and their psychological determinants. Combining the results from 22 studies, this meta-analysis found that narrative game-based interventions were effective in changing behaviors, knowledge, self-efficacy, and enjoyment. These effects were moderated by factors such as the genre of the game, the genre of the story, group play, and participant age. Implications of the findings and suggestions for future design of narrative game-based interventions were discussed.

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.

"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.

Communicating Breast Cancer Screening With Young Women: An Experimental Test of Didactic and Narrative Messages Using Video and Infographics.

Cancer is one of the leading causes of death around the world. Mortality from breast cancer can be reduced if the cancer is detected early enough. It is important to find effective communication that encourages early detection of breast cancer. This study aimed to measure differences between narrative and didactic communication on breast cancer awareness, knowledge of appropriate diagnostic exams, attitude toward breast self-exam, and intention to screen for breast cancer through a breast self-exam. It further aimed to test whether any differences in outcomes were associated with the format used to deliver the communication: video or infographic. The effects of the communication strategies were tested using an experimental design with a control group and four experimental groups: narrative video, didactic video, narrative infographic, or didactic infographic. A total of 194 Italian-speaking women ages 18-30 years completed questionnaires before and after exposure. Positive increases were found for all outcome variables after exposure to any communication strategy tested. The didactic message delivered in video format had the most positive effect on awareness and knowledge, whereas the narrative video message had the most positive effect on attitude and intention. For both message types, videos had a more positive influence than infographics when communicating breast cancer information for this audience. This was the first study of message effects of breast cancer communication with Italian-speaking young women. Further research is warranted to understand how to maximize communication strategies so that they are the most effective in influencing behaviors and if these results are consistent with other linguistic populations.

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.