Perceptions of Palliative Care: Demographics and Health Status Among the General Population in Florida and the United States.

BACKGROUND: Palliative care (PC) helps maintain quality of life for seriously ill patients, yet, many Americans lack knowledge of PC. AIM: To explore the relationships between knowledge of PC of individuals living in north-central Florida and throughout the United States. DESIGN: This cross-sectional survey with three sampling approaches, one was a community-engaged sample and two were panel respondent samples. Respondents and setting: Respondents of the Florida sample (n1 = 329) and the community-engaged sample (n2 = 100), were representative of the 23 Florida county general population. Respondents of the national sample (n = 1800) were adult members of a panel owned by a cloud-based survey platform. RESULTS: Young adults compared with adults (OR 1.62, 95% CI 1.14-2.28, P .007), middle-adults (OR 2.47, 95% CI 1.58-3.92, P < .001) and older-adults (OR 3.75, 95% CI 2.50-5.67, P < .001) were less likely to agree that the goal of PC is to help friends and family cope with a patient's illness, and that the goal of PC is to manage pain and other physical symptoms compared with adults (OR 1.67, 95% CI 1.20-2.30, P .002) middle-adults (OR 2.58, 95% CI 1.71-3.95, P < .001) and older-adults (OR 7.19, 95% CI 4.68-11.2, P < .001). Participants with greater rural identity (OR 1.39, 95% CI 1.31-1.48, P < .001) were more likely to agree that accepting PC means giving up. CONCLUSIONS: Increased knowledge of PC might be influenced through targeting educational interventions and educating the general population through social media use.

Developing the Opioid Rapid Response System™ for Lay Citizen Response to the Opioid Overdose Crisis: a Randomized Controlled Trial.

Emergency responders face challenges in arriving timely to administer naloxone in opioid overdoses. Therefore, interest in having lay citizens administer naloxone nasal spray has emerged. These citizens, however, must be recruited and trained, and be in proximity to the overdose. This study aimed to develop the Opioid Rapid Response System (ORRS)tm to meet this need by developing a system to recruit and train citizen responders and evaluate outcomes in a randomized clinical trial. ORRS recruitment messages and training platform were developed iteratively and then outcomes for each were evaluated in a randomized, unblinded two-arm waitlist-controlled trial. ORRS was field tested in 5 Indiana counties, recruiting adult citizen responders (age 18 or older) who did not self-identity as a certified first responder. Participants were recruited using either personal or communal messages and then randomly assigned to online naloxone training and waitlisted-control conditions. Pre- and post-surveys were administered online to measure the exposure to recruitment messages and training effects on knowledge of opioid overdose, confidence responding, concerns about responding, and intent to respond. Of the 220 randomized participants (114 training, 106 waitlisted-control), 140 were analyzed (59 training, 81 waitlisted-control). Recruited participants more frequently identified with communal appeal than with the personal appeal (chi-square = 53.5; p < 0.0001). Between-group differences for intervention effects were significant for knowledge of overdose signs (Cohen's d = 1.17), knowledge of overdose management (d = 1.72), self-efficacy (d = 1.39), and concerns (d = 1.31), but not for intent (d = 0.17), which suffered from a ceiling effect. ORRS provides stronger support for efficacy than that reported for other training interventions and the digital modality eases rapid dissemination.Trial Registration: NCT04589676.

Florida-California Cancer Research, Education and Engagement (CaRE2) Health Equity Center: Structure, Innovations, and Initial Outcomes.

INTRODUCTION: The Florida-California Cancer Research, Education, and Engagement (CaRE2) Health Equity Center is a triad partnership committed to increasing institutional capacity for cancer disparity research, the diversity of the cancer workforce, and community empowerment. This article provides an overview of the structure, process innovations, and initial outcomes from the first 4 years of the CaRE2 triad partnership. METHODS: CaRE2 serves diverse populations in Florida and California using a "molecule to the community and back" model. We prioritize research on the complex intersection of biological, environmental, and social determinants health, working together with scientific and health disparities communities, sharing expertise across institutions, bidirectional training, and community outreach. Partnership progress and outcomes were assessed using mixed methods and four Program Steering Committee meetings. RESULTS: Research capacity was increased through development of a Living Repository of 81 cancer model systems from minority patients for novel cancer drug development. CaRE2 funded 15 scientific projects resulting in 38 publications. Workforce diversity entailed supporting 94 cancer trainees (92 URM) and 34 ESIs (32 URM) who coauthored 313 CaRE2-related publications and received 48 grants. Community empowerment was promoted via outreaching to more than 3000 individuals, training 145 community cancer advocates (including 28 Community Scientist Advocates), and publishing 10 community reports. CaRE2 members and trainees together have published 639 articles, received 61 grants, and 57 awards. CONCLUSION: The CaRE2 partnership has achieved its initial aims. Infrastructure for translational cancer research was expanded at one partner institution, and cancer disparities research was expanded at the two cancer centers.

Patient message preferences to promote clinical conversations about chronic obstructive pulmonary disease (COPD): A discrete choice experiment.

The purpose of this study was to identify message features that motivate patients to initiate clinical conversations about Chronic Obstructive Pulmonary Disease (COPD). A secondary aim was to determine whether preferred message features vary by socio-demographic and behavioral characteristics. A discrete choice experiment was conducted in August 2020. Participants were asked to select which messages would motivate them to speak with a clinician about COPD. This included selecting messages across 8 choice sets, or a systematic combination of messages reflecting 6 attributes (e.g., susceptibility, call-to-action, emotion-frame, efficacy, message source, organizational support). The final sample was 928, which included adults (M = 62.07; SD = 10.14 years old) who identified as non-Hispanic, white, and with at least some college experience. Message attributes ranked from most to least important were COPD susceptibility (25.53% [95% CI = 24.39, 26.66]), message source (19.32% [95% CI = 18.41-20.24]), COPD organization logo (19.13%; [95% CI = 18.26, 20.01]), call-to-action (14.12%; [95% CI = 13.40, 14.85], emotion-frame (13.24% [95% CI = 12.55-13.94]), and efficacy (8.65%; [95% CI = 8.20-9.09]). Participants preferred susceptibility messages about COPD signs/symptoms rather than risk behaviors related to smoking tobacco and environmental exposures. They also preferred messages from medical authorities (i.e., clinicians, COPD organization), a call-to-action that supports their autonomy in screening decision-making, and a message that conveys hope for living a healthy life with COPD and builds their self-efficacy to get screened. Differences in message preferences were detected according to age, gender, race, ethnicity, education level, and current vs. former smoking status. This study identified message features that motivate clinical conversations about COPD, especially those from subgroups who are disproportionately at-risk for its late-stage diagnosis.

Information Architects: Using Community-Engaged and Qualitative Methods to Design a Technology-Based Nutrition and Cancer Risk Intervention for Rural Adults.

BACKGROUND: Nearly half of all cancer deaths are preventable through modification or avoidance of key risk factors. As such, there is a growing urgency to identify effective, low-resource, and scalable technologies that support clinical care and patient self-management of health behaviors. PURPOSE: Informed by theories of cognitive load and user-centered design approaches, we develop a culturally tailored, multicomponent digital intervention to engage rural adults between 50-73 years old with their personalized nutrition risk factors for colorectal cancer (CRC) prevention. METHOD: A total of 48 adults tested a Virtual Health Assistant (VHA) prototype during focus groups in individual think-aloud interviews to facilitate iterative adaptations to a web-based CRC prevention intervention. Qualitative data was analyzed to identify user needs and preferences related to information and with a focus on avoiding cognitive overload. RESULTS: The VHA serves as a conceptual pre-training for users helping them understand CRC prevention key concepts and engendering motivation to act on the promoted behavior. A website was identified as a strategy to fill information gaps and present actionable information, after the VHA interaction. Cognitive load reducing strategies were used including segmenting where information is presented in learner-controlled segments rather than continuously. CONCLUSIONS: Findings indicate potential benefits of designing CRC prevention information technologies with the rural older adults. Integrating patient-centered needs before launching health information web content will be important as the rapid growth of telemedicine aims to reach traditionally marginalized and underserved populations. Theoretically informed considerations for potential adverse outcomes (eg, information overload) are discussed.

Pot Song as a Novel Cancer Communication Intervention: Lessons Learned from Developing, Implementing, and Evaluating a Culturally Grounded Intervention for Breast Cancer Education in Rural Bangladesh.

Targeted public education may offer an approach to achieving more effective treatment in countries like Bangladesh, where breast cancer is a leading cause of cancer death in women. Effective cancer education interventions address the target population's cultural and contextual needs. However, there is little published literature to guide the development of educational cancer interventions in a region where lack of resources combined with cultural stigma about cancer contribute to poor breast health outcomes for women. The goal of the current study was to design, test, and evaluate a culturally grounded intervention to promote breast problem care among women in rural Bangladesh. The current manuscript first describes the process of formative evaluation that led to the development of the intervention, including decisions about the audience, message construction, and mode of intervention delivery. Second, we describe the testing process, including process and outcome evaluation. Finally, we describe the lessons learned from the process. We conclude with recommendations related to cultural grounding for message development, questionnaire design, data collection procedures, and analysis.

Rural adults' perceptions of nutrition recommendations for cancer prevention: Contradictory and conflicting messages.

Despite robust evidence linking alcohol, processed meat, and red meat to colorectal cancer (CRC), public awareness of nutrition recommendations for CRC prevention is low. Marginalized populations, including those in rural areas, experience high CRC burden and may benefit from culturally tailored health information technologies. This study explored perceptions of web-based health messages iteratively in focus groups and interviews with 48 adults as part of a CRC prevention intervention. We analyzed transcripts for message perceptions and identified three main themes with subthemes: (1) Contradictory recommendations, between the intervention's nutrition risk messages and recommendations for other health conditions, from other sources, or based on cultural or personal diets; (2) reactions to nutrition risk messages, ranging from aversion (e.g., "avoid alcohol" considered "preachy") to appreciation, with suggestions for improving messages; and (3) information gaps. We discuss these themes, translational impact, and considerations for future research and communication strategies for delivering web-based cancer prevention messages.

Can virtual human clinicians help close the gap in colorectal cancer screening for rural adults in the United States? The influence of rural identity on perceptions of virtual human clinicians.

Rural adults experience disparities in colorectal cancer screening, a trend even more distinct among rural Black adults. Healthcare disruptions caused by COVID-19 exacerbated inequities, heightening attention on virtual communication strategies to increase screening. Yet little is known about how rural adults perceive virtual human clinicians (VHCs). Given that identifying as rural influences perceived source credibility often through appearance judgments, the goal of this pilot was to explore how to develop VHCs that individuals highly identified with rurality find attractive. Between November 2018 and April 2019, we tested a culturally tailored, VHC-led telehealth intervention delivering evidence-based colorectal cancer prevention education with White and Black adults (N = 2079) in the United States recruited through an online panel who were non-adherent to screening guidelines and between 50 and 73 years of age. Participants were randomized on three factors (VHC race-matching, VHC gender-matching, Intervention type). Ordinal logistic regression models examined VHC appearance ratings. Participants with a high rural identity (AOR = 1.12, CI = [1.02, 1.23], p =.02) rated the VHCs more attractive. High rural belonging influenced VHC attractiveness for Black participants (AOR = 1.22, CI = [1.03, 1.44], p =.02). Also, Black participants interacting with a Black VHC and reporting high rural self-concept rated the VHC as more attractive (AOR = 2.22, CI = [1.27, 3.91], p =.01). Findings suggest adults for whom rural identity is important have more positive impressions of VHC attractiveness. For patients with strong rural identities, enhancing VHC appearance is critical to tailoring colorectal cancer prevention interventions.

What did the pandemic teach us about effective health communication? Unpacking the COVID-19 infodemic.

BACKGROUND: The spread of unvetted scientific information about COVID-19 presents a significant challenge to public health, adding to the urgency for increased understanding of COVID-19 information-seeking preferences that will allow for the delivery of evidence-based health communication. This study examined factors associated with COVID-19 information-seeking behavior. METHODS: An online survey was conducted with US adults (N = 1800) to identify key interpersonal (e.g., friends, health care providers) and mediated (e.g., TV, social media) sources of COVID-19 information. Logistic regression models were fitted to explore correlates of information-seeking. RESULTS: Study findings show that the first sought and most trusted sources of COVID-19 information had different relationships with sociodemographic characteristics, perceived discrimination, and self-efficacy. Older adults had greater odds of seeking information from print materials (e.g., newspapers and magazines) and TV first. Participants with less educational attainment and greater self-efficacy preferred interpersonal sources first, with notably less preference for mass media compared to health care providers. Those with more experiences with discrimination were more likely to seek information from friends, relatives, and co-workers. Additionally, greater self-efficacy was related to increased trust in interpersonal sources. CONCLUSION: Study results have implications for tailoring health communication strategies to reach specific subgroups, including those more vulnerable to severe illness from COVID-19. A set of recommendations are provided to assist in campaign development.

Do they speak like me? Exploring how perceptions of linguistic difference may influence patient perceptions of healthcare providers.

The increased utilization of telehealth has provided patients with the opportunity to interact with racially diverse healthcare providers (HCPs). While evidence of racial stereotypes in healthcare is well documented, less is known about whether linguistic cues increase or decrease racial bias in healthcare interactions. The purpose of this pilot study was to use virtual clinicians (VCs) to examine how varying linguistic features affect patient perceptions of Black-identifying HCPs. Participants (N = 282) were recruited to participate in an online pilot study using a two-arm posttest-only experimental design. Participants were randomly assigned to interact with a Black VC that used vocal cues associated with either Standard American English (SAE) or African American English (AAE) on the topic of colorectal cancer. After the interaction, participants completed a posttest questionnaire. Resulting data were analyzed using mediation.

Developing the Florida Academic Cancer Center Alliance Health Disparities Common Measure: The Florida Health and Ancestry Survey.

PURPOSE: Our specific aim was to develop and assess the consensus-based validity of common measures for understanding health behaviors and ancestry in Florida's population subgroups and establish the feasibility of wide-scale implementation of the measures and biospecimen collection within three cancer centers' catchment areas. METHODS: Using the National Cancer Institute's Grid-Enabled Measures web-based platform and an iterative process, we developed the Florida Health and Ancestry Survey (FHAS). We then used three sampling approaches to implement the FHAS: community-engaged, panel respondent, and random digit dialing (RDD). We asked a subset of participants to provide a saliva sample for future validation of subjective ancestry report with DNA-derived ancestry markers. RESULTS: This process supported the FHAS content validity. As an indicator of feasibility, the goals for completed surveys by sampling approach were met for two of the three cancer centers, yielding a total of 1438 completed surveys. The RDD approach produced the most representative sample. The panel sampling approach produced inadequate representation of older individuals and males. The community-engaged approach along with social media recruitment produced extreme underrepresentation only for males. Two of the cancer centers mailed biospecimen kits, whereas one did not due to resource constraints. On average, the community engaged approach was more productive in obtaining returned biospecimen samples (80%) than the panel approach (48%). CONCLUSIONS: We successfully developed and implemented the FHAS as a common measure to show its feasibility for understanding cancer health disparities in Florida. We identified sampling approach successes and challenges to obtaining biospecimens for ancestry research.

Telehealth and racial disparities in colorectal cancer screening: A pilot study of how virtual clinician characteristics influence screening intentions.

Introduction: Racial disparities in colorectal cancer (CRC) can be addressed through increased adherence to screening guidelines. In real-life encounters, patients may be more willing to follow screening recommendations delivered by a race concordant clinician. The growth of telehealth to deliver care provides an opportunity to explore whether these effects translate to a virtual setting. The primary purpose of this pilot study is to explore the relationships between virtual clinician (VC) characteristics and CRC screening intentions after engagement with a telehealth intervention leveraging technology to deliver tailored CRC prevention messaging. Methods: Using a posttest-only design with three factors (VC race-matching, VC gender, intervention type), participants (N = 2267) were randomised to one of eight intervention treatments. Participants self-reported perceptions and behavioral intentions. Results: The benefits of matching participants with a racially similar VC trended positive but did not reach statistical significance. Specifically, race-matching positively influenced screening intentions for Black participants but not for Whites (b = 0.29, p = 0.10). Importantly, perceptions of credibility, attractiveness, and message relevance significantly influenced screening intentions and the relationship with race-matching. Conclusions: To reduce racial CRC screening disparities, investments are needed to identify patient-focused interventions to address structural barriers to screening. This study suggests that telehealth interventions that match Black patients with a Black VC can enhance perceptions of credibility and message relevance, which may then improve screening intentions. Future research is needed to examine how to increase VC credibility and attractiveness, as well as message relevance without race-matching.

Communicating risk to promote colorectal cancer screening: a multi-method study to test tailored versus targeted message strategies.

Colorectal cancer (CRC) screening rates are suboptimal, partly due to poor communication about CRC risk. More effective methods are needed to educate patients, but little research has examined best practices for communicating CRC risk. This multi-method study tests whether tailoring CRC risk information increases screening intentions. Participants (N = 738) were randomized with a 2:2:1 allocation to tailored, targeted, and control message conditions. The primary outcome was intention to screen for CRC (yes/no). Additional variables include perceived message relevance, perceived susceptibility to CRC, and free-text comments evaluating the intervention. A chi-square test determined differences in the proportion of participants who intended to complete CRC screening by condition. A logistic-based path analysis explored mediation. Free-text comments were analyzed using advanced topic modeling analysis. CRC screening intentions were highest in the tailored intervention and significantly greater than control (P = 0.006). The tailored message condition significantly increased message relevance compared with control (P = 0.027) and targeted conditions (P = 0.002). The tailored condition also increased susceptibility (P < 0.001) compared with control, which mediated the relationship between the tailored condition and intention to screen (b = 0.04, SE = 0.02, 95% confidence interval = 0.02, 0.09). The qualitative data reflect similar trends. The theoretical mechanisms and practical implications of tailoring health education materials about CRC risk are discussed.

A Subjective Culture Approach to Cancer Prevention: Rural Black and White Adults' Perceptions of Using Virtual Health Assistants to Promote Colorectal Cancer Screening.

In the US, Black adults are less likely than White adults to be screened for colorectal cancer (CRC). This study uses a subjective culture approach to describe and compare perceptions of a CRC screening intervention delivered via virtual health assistants (VHAs) among rural Black and White study participants. We analyzed 28 focus groups with Black (n = 85) and White (n = 69) adults aged 50-73. Participants, largely recruited through community engagement efforts, tested the VHA intervention on mobile phones provided by the research team. Moderated discussions were recorded, transcribed, and analyzed using thematic analysis. All groups preferred the VHA to be friendly. Other important cues included trustworthiness, authority, and expertise. Black participants expressed a preference for receiving information about their CRC risk from the VHA compared with White adults. Black participants also expressed the importance of sharing the intervention and the CRC screening messages with younger members of their networks, including family members who could benefit from screening messages before reaching the recommended age for screening. The key similarities and differences between Black and White adults' perceptions of the intervention that were identified in this study can help inform future efforts to develop effective communication strategies and reduce cancer screening inequities.

Development of a Credible Virtual Clinician Promoting Colorectal Cancer Screening via Telehealth Apps for and by Black Men: Qualitative Study.

BACKGROUND: Traditionally, promotion of colorectal cancer (CRC) screening among Black men was delivered by community health workers, patient navigators, and decision aids (printed text or video media) at clinics and in the community setting. A novel approach to increase CRC screening of Black men includes developing and utilizing a patient-centered, tailored message delivered via virtual human technology in the privacy of one's home. OBJECTIVE: The objective of this study was to incorporate the perceptions of Black men in the development of a virtual clinician (VC) designed to deliver precision messages promoting the fecal immunochemical test (FIT) kit for CRC screening among Black men in a future clinical trial. METHODS: Focus groups of Black men were recruited to understand their perceptions of a Black male VC. Specifically, these men identified source characteristics that would enhance the credibility of the VC. The modality, agency, interactivity, and navigability (MAIN) model, which examines how interface features affect the user's psychology through four affordances (modality, agency, interactivity, and navigability), was used to assess the presumed credibility of the VC and likability of the app from the focus group transcripts. Each affordance triggers heuristic cues that stimulate a positive or a negative perception of trustworthiness, believability, and understandability, thereby increasing source credibility. RESULTS: In total, 25 Black men were recruited from the community and contributed to the development of 3 iterations of a Black male VC over an 18-month time span. Feedback from the men enhanced the visual appearance of the VC, including its movement, clothing, facial expressions, and environmental surroundings. Heuristics, including social presence, novelty, and authority, were all recognized by the final version of the VC, and creditably was established. The VC was named Agent Leveraging Empathy for eXams (ALEX) and referred to as "brother-doctor," and participants stated "wanting to interact with ALEX over their regular doctor." CONCLUSIONS: Involving Black men in the development of a digital health care intervention is critical. This population is burdened by cancer health disparities, and incorporating their perceptions in telehealth interventions will create awareness of the need to develop targeted messages for Black men.

Engaging Institutional Stakeholders to Develop and Implement Guidelines for Recruiting Participants in Research Studies Using Social Media: Mixed Methods, Multi-Phase Process.

BACKGROUND: Limited regulatory guidance surrounding the use of social media channels for participant recruitment is an interdisciplinary challenge. Establishing stakeholder-informed procedures is essential for ethical and effective use of social media for participant recruitment. OBJECTIVE: This study aims to provide replicable procedures for developing and implementing guidelines for using social media to recruit participants in research studies. METHODS: Social media use cases at the university were used to identify institutional stakeholders for the initiative. After establishing workflow procedures, a scoping review of web-based materials about recruitment and research on the internet and social media from 19 peer institutions and 2 federal agencies was conducted to inform the structure of the policies and procedures. End users (investigators and study coordinators; N=14) also provided feedback on the policies and procedures and implementation. RESULTS: Representatives (n=7) from 5 institutional offices and 15 subject-matter experts from 5 areas were identified as stakeholders in the development of policies and procedures. Peers with web-based materials (n=16) identified in the scoping review revealed 4 themes that served as a basis for developing our policies and procedures. End user feedback further informed the policies and procedures and implementation. A centrally managed social media account for communicating with participants and hosting advertising campaigns on social media was also established and, when combined with the policies and procedures, resulted in 39 advertising campaigns, and 2846 participants were enrolled in health and clinical research studies. CONCLUSIONS: Our policies and procedures allow research teams to harness the potential of social media to increase study recruitment and participation; the transparent, stakeholder-informed process can be replicated by institutional administrators to establish policies and procedures that meet the interests and needs of their research community.

Key changes to improve social presence of a virtual health assistant promoting colorectal cancer screening informed by a technology acceptance model.

BACKGROUND: Understanding how older, minoritized patients attend to cues when interacting with web-based health messages may provide opportunities to improve engagement with novel health technologies. We assess acceptance-promoting and acceptance-inhibiting cues of a web-based, intervention promoting colorectal cancer (CRC) screening with a home stool test among Black women. MATERIALS AND METHODS: Focus group and individual interview data informed iterative changes to a race- and gender-concordant virtual health assistant (VHA). A user-centered design approach was used across 3 iterations to identify changes needed to activate cues described as important; such as portraying authority and expertise. Questionnaire data were analyzed using non-parametric tests for perceptions of cues. Analysis was guided by the Technology Acceptance Model. RESULTS: Perceptions of interactivity, social presence, expertise, and trust were important cues in a VHA-delivered intervention promoting CRC screening. Features of the web-based platform related to ease of navigation and use were also discussed. Participant comments varied across the 3 iterations and indicated acceptance of or a desire to improve source cues for subsequent iterations. We highlight the specific key changes made at each of three iterative versions of the interactive intervention in conjunction with user perception of changes. DISCUSSION: Virtual agents can be adapted to better meet patient expectations such as being a trustworthy and expert source. Across three evolving versions of a Black, VHA, cues for social presence were particularly important. Social presence cues helped patients engage with CRC screening messages delivered in this novel digital context. CONCLUSIONS: When using a VHA to disseminate health information, cues associated with acceptability can be leveraged and adapted as needed for diverse audiences. Patient characteristics (age, identity, health status) are important to note as they may affect perceptions of a novel health technologies ease of use and relevancy according to the leading models.

A Pilot Study Examining the Efficacy of Delivering Colorectal Cancer Screening Messages via Virtual Health Assistants.

INTRODUCTION: Patients are more likely to complete colorectal cancer screening when recommended by a race-concordant healthcare provider. Leveraging virtual healthcare assistants to deliver tailored screening interventions may promote adherence to colorectal cancer screening guidelines among diverse patient populations. The purpose of this pilot study is to determine the efficacy of the Agent Leveraging Empathy for eXams virtual healthcare assistant intervention to increase patient intentions to talk to their doctor about colorectal cancer screening. It also examines the influence of animation and race concordance on intentions to complete colorectal cancer screening. METHODS: White and Black adults (N=1,363) aged 50-73 years and not adherent to colorectal cancer screening guidelines were recruited from Qualtrics Panels in 2018 to participate in a 3-arm (animated virtual healthcare assistant, static virtual healthcare assistant, attention control) message design experiment. In 2020, a probit regression model was used to identify the intervention effects. RESULTS: Participants assigned to the animated virtual healthcare assistant (p<0.01) reported higher intentions to talk to their doctor about colorectal cancer screening than participants assigned to the other conditions. There was a significant effect of race concordance on colorectal cancer screening intentions but only in the static virtual healthcare assistant condition (p=0.04). Participant race, age, trust in healthcare providers, health literacy, and cancer information overload were also significant predictors of colorectal cancer screening intentions. CONCLUSIONS: Animated virtual healthcare assistants were efficacious compared with the static virtual healthcare assistant and attention control conditions. The influence of race concordance between source and participant was inconsistent across conditions. This warrants additional investigation in future studies given the potential for virtual healthcare assistant‒assisted interventions to promote colorectal cancer screening within guidelines.

Perspectives of Pregnant and Breastfeeding Women on Participating in Longitudinal Mother-Baby Studies Involving Electronic Health Records: Qualitative Study.

BACKGROUND: Electronic health records (EHRs) hold great potential for longitudinal mother-baby studies, ranging from assessing study feasibility to facilitating patient recruitment to streamlining study visits and data collection. Existing studies on the perspectives of pregnant and breastfeeding women on EHR use have been limited to the use of EHRs to engage in health care rather than to participate in research. OBJECTIVE: The aim of this study is to explore the perspectives of pregnant and breastfeeding women on releasing their own and their infants' EHR data for longitudinal research to identify factors affecting their willingness to participate in research. METHODS: We conducted semistructured interviews with pregnant or breastfeeding women from Alachua County, Florida. Participants were asked about their familiarity with EHRs and EHR patient portals, their comfort with releasing maternal and infant EHR data to researchers, the length of time of the data release, and whether individual research test results should be included in the EHR. The interviews were transcribed verbatim. Transcripts were organized and coded using the NVivo 12 software (QSR International), and coded data were thematically analyzed using constant comparison. RESULTS: Participants included 29 pregnant or breastfeeding women aged between 22 and 39 years. More than half of the sample had at least an associate degree or higher. Nearly all participants (27/29, 93%) were familiar with EHRs and had experience accessing an EHR patient portal. Less than half of the participants (12/29, 41%) were willing to make EHR data available to researchers for the duration of a study or longer. Participants' concerns about sharing EHRs for research purposes emerged in 3 thematic domains: privacy and confidentiality, transparency by the research team, and surrogate decision-making on behalf of infants. The potential release of sensitive or stigmatizing information, such as mental or sexual health history, was considered in the decisions to release EHRs. Some participants viewed the simultaneous use of their EHRs for both health care and research as potentially beneficial, whereas others expressed concerns about mixing their health care with research. CONCLUSIONS: This exploratory study indicates that pregnant and breastfeeding women may be willing to release EHR data to researchers if researchers adequately address their concerns regarding the study design, communication, and data management. Pregnant and breastfeeding women should be included in EHR-based research as long as researchers are prepared to address their concerns.

An Electronic Tool to Support Patient-Centered Broad Consent: A Multi-Arm Randomized Clinical Trial in Family Medicine.

PURPOSE: Patients are frequently asked to share their personal health information. The objective of this study was to compare the effects on patient experiences of 3 electronic consent (e-consent) versions asking patients to share their health records for research. METHODS: A multi-arm randomized controlled trial was conducted from November 2017 through November 2018. Adult patients (n = 734) were recruited from 4 family medicine clinics in Florida. Using a tablet computer, participants were randomized to (1) a standard e-consent (standard), (2) an e-consent containing standard information plus hyperlinks to additional interactive details (interactive), or (3) an e-consent containing standard information, interactive hyperlinks, and factual messages about data protections and researcher training (trust-enhanced). Satisfaction (1 to 5), subjective understanding (0 to 100), and other outcomes were measured immediately, at 1 week, and at 6 months. RESULTS: A majority of participants (94%) consented to future uses of their health record information for research. No differences in study outcomes between versions were observed at immediate or 1-week follow-up. At 6-month follow-up, compared with the standard e-consent, participants who used the interactive e-consent reported greater satisfaction (B = 0.43; SE = 0.09; P <.001) and subjective understanding (B = 18.04; SE = 2.58; P <.001). At 6-month follow-up, compared with the interactive e-consent, participants who used the trust-enhanced e-consent reported greater satisfaction (B = 0.9; SE = 1.0; P <.001) and subjective understanding (B = 32.2; SE = 2.6, P <.001). CONCLUSIONS: Patients who used e-consents with interactive research details and trust-enhancing messages reported higher satisfaction and understanding at 6-month follow-up. Research institutions should consider developing and further validating e-consents that interactively deliver information beyond that required by federal regulations, including facts that may enhance patient trust in research.