Linking genetic counseling communication skills to patient outcomes and experiences using a community-engagement and provider-engagement approach: research protocol for the GC-PRO mixed methods sequential explanatory study.

INTRODUCTION: In over 50 years since the genetic counseling (GC) profession began, a systematic study of GC communication skills and patient-reported outcomes in actual sessions across multiple clinical specialties has never been conducted. To optimize GC quality and improve efficiency of care, the field must first be able to comprehensively measure GC skills and determine which skills are most critical to achieving positive patient experiences and outcomes. This study aims to characterise GC communication skills using a novel and pragmatic measure and link variations in communication skills to patient-reported outcomes, across clinical specialties and with patients from diverse backgrounds in the USA. Our community-engagement and provider-engagement approach is crucial to develop recommendations for quality, culturally informed GC care, which are greatly needed to improve GC practice. METHODS AND ANALYSIS: A mixed methods, sequential explanatory design will be used to collect and analyze: audio-recorded GC sessions in cancer, cardiac, and prenatal/reproductive genetic indications; pre-visit and post-visit quantitative surveys capturing patient experiences and outcomes and post-visit qualitative interview data. A novel, practical checklist will measure GC communication skills. Coincidence analysis will identify patterns of GC skills that are consistent with high scores on patient-reported measures. Two-level, multilevel models will be used to evaluate how GC communication skills and other session/patient characteristics predict patient-reported outcomes. Four community advisory boards (CABs) and a genetic counselor advisory board will inform the study design and analysis. ETHICS AND DISSEMINATION: This study has been approved by the single Institutional Review Board of the University of Minnesota. This research poses no greater than minimal risk to participants. Results from this study will be shared through national and international conferences and through community-based dissemination as guided by the study's CABs. A lay summary will also be disseminated to all participants.

Inconvenient sampling: Community-engaged and restorative justice approaches to genetic counseling student research.

Genetic counseling research requires a comprehensive approach since it frequently serves as the foundation for clinical care practice. Genetic counseling students play a pivotal role in advancing the profession, as they contribute a significant proportion of the research conducted within the genetic counseling community. However, a prevailing trend of convenience sampling of genetic counselors has limited the diversity of perspectives in student research projects. This article promotes a strategy for greater inclusivity and equity in research by emphasizing community-engaged and empowered research through the perspective of restorative justice. Reflecting on the shadow of the harmful ideologies of eugenics in our profession underscores the need to amplify patients' voices and diverse experiences. Community-engaged research-in collaboration with individuals, families, and communities directly impacted by genetic counseling-transcends traditional research paradigms, empowering patients and addressing systemic inequities. Incorporating community-engaged research into genetic counseling student projects aims to empower future professionals to better understand patient perspectives and needs while working toward addressing historical injustices. This article explores the potential benefits and pathways of incorporating community-engaged research and restorative justice principles into genetic counseling scholarly work, promoting empathy, cultural responsiveness, and ultimately, a more patient-centered approach to research and clinical care. By embracing this collective journey toward authentic partnership in the production of high-quality evidence in genetic counseling student research and more broadly, genetic counseling can become a more just and inclusive practice.

Extending an Antiracism Lens to the Implementation of Precision Public Health Interventions.

Precision public health holds promise to improve disease prevention and health promotion strategies, allowing the right intervention to be delivered to the right population at the right time. Growing concerns underscore the potential for precision-based approaches to exacerbate health disparities by relying on biased data inputs and recapitulating existing access inequities. To achieve its full potential, precision public health must focus on addressing social and structural drivers of health and prominently incorporate equity-related concerns, particularly with respect to race and ethnicity. In this article, we discuss how an antiracism lens could be applied to reduce health disparities and health inequities through equity-informed research, implementation, and evaluation of precision public health interventions. (Am J Public Health. 2023;113(11):1210-1218. https://doi.org/10.2105/AJPH.2023.307386).

Communicating risk and the landscape of cancer prevention - an exploratory study that examines perceptions of cancer-related genetic counseling and testing among African Americans and Latinos in the Midwest.

African American (AA) and Latino populations are impacted disproportionately by cancer incidence and mortality compared to the general US population. Contributing to these rates are multiple inheritable cancers that impact both men and women. Some of these diseases may be detected through genetic counseling and germline DNA testing; however, AA and Latinos are unaware and have limited knowledge and thus significantly underutilize these services and technologies. Research to detect influencing factors to testing uptake has also been slow due to multiple factors. The research team followed a community-based participatory research (CBPR) approach and worked with a Community Advisory Board composed of cancer survivors and co-survivors to design the exploratory study. Six focus groups were held with a pilot sample of African Americans and Latinos who self-reported to be at-risk for cancer (N = 53). The study was held over a 2-month period where attitudes, perceptions, and beliefs about cancer risk and preference regarding cancer-related genetic counseling and testing risk communication were explored. Themes that emerged included (1) the lack of knowledge about cancer-related genetic counseling and testing; (2) cancer is feared often; (3) cancer-related genetic testing was perceived as something that could help but was also perceived as unnecessary testing that exposed individuals to medical harm; and (4) benefits to test were perceived as favorable for medical personnel but not for the patient. Implications of the study provide a unique lens to explore how lived experiences among AA and Latinos may inform strategic risk communication about cancer-related genetic counseling and testing and help advance cancer health equity. Participants viewed cancer genetic testing as important cancer risk prevention strategies. Identification of perceptions of cancer risk and cancer-related genetic counseling and testing in collaboration with members of the community is needed to bolster communication efforts among these populations.

In Our Sacred Voice - An Exploration of Tribal and Community Leader Perceptions as Health Communicators of Disease Prevention among American Indians in the Plains.

American Indians (AI) are disproportionately and significantly impacted by disease morbidity, mortalityand poor behavioral health outcomes. Health promotion and health communication programs exist to address these health disparities and health conditions; however, few programs fully integrate holistic approaches when targeting AI populations. The objective of this study was to explore how tribal and community leaders throughout the Central Plains (Kansas, Iowa, Missouri, and South Dakota) viewed themselves as health communicators and health promoters within their communities. Members of the Center for American Indian Community Health (CAICH) conducted 39 in-depth interviews with members of federally recognized tribes living in reservation communities as well as urban tribal communities across the region. Results from the sample show that these individuals do not necessarily see themselves as the "authority" health communicator or health promoter within their tribe or community. They did perceive themselves and others as gatekeepers of pertinent health information. Social and cultural authority within culturally centered messaging and collective delivery of this type of health information from trusted sources within tribes and communities is perceived to bolster health communication programs and positively impact health outcomes among AI populations.

A road map for the future: An exploration of attitudes, perceptions, and beliefs among African Americans to tailor health promotion of cancer-related genetic counseling and testing.

African Americans (AA), the second largest racial/ethnic minority group in the United States (US), carry the largest mortality burden of cancer compared with other racial/ethnic groups (Cancer Facts & Figures for African Americans, 2019-2021, American Cancer Society).One solution to address this disparity is through cancer-related genetic counseling and testing (CGT). Although CGT is utilized among the general population, it remains underutilized among AA populations. Community-engaged and community-driven health promotion programs within faith-based organizations (FBOs) have been successfully implemented and delivered among AA populations (Israel et al., American Journal of Public Health, 100, 2010, 2094). FBOs are well positioned for cancer-related health promotion and equipped as conduits of health education and information distribution for cancer prevention. In the present pilot study, a community-based participatory approach (CBPR) was used to collect exploratory data on attitudes, perceptions, and beliefs toward CGT and uptake among an AA sample in the Midwest. Focus groups were conducted in two churches where respondents (N=34) answered a pre-focus group survey prior to a discussion. Respondents were largely unaware of CGT and thought of testing as primarily for ancestral discovery and not for an inheritable disease. Themes identified through qualitative analysis included emotional experiences with cancer; perception of cancer risk; different pictures of genetic testing; other things to worry about; trust in the healthcare system/faith in God and the healthcare system; and ideas and insights regarding promotion of CGT. These primary themes showed participants' perceptions of CGT were shaped by their experiences with cancer, faith, faith communities/FBOs, and cost and access to CGT. Overall, participants within these organizations had positive perceptions about the church as a conduit of genetic testing information but had mixed opinions about the rationale for completing CGT. These findings have implications for genetic counselors, medical providers, and health promotion personnel as to how AA faith populations view CGT and the utility of FBOs as promoters of CGT information.

Considering religion and spirituality in precision medicine.

The emerging era of precision medicine (PM) holds great promise for patient care by considering individual, environmental, and lifestyle factors to optimize treatment. Context is centrally important to PM, yet, to date, little attention has been given to the unique context of religion and spirituality (R/S) and their applicability to PM. R/S can support and reinforce health beliefs and behaviors that affect health outcomes. The purpose of this article is to discuss how R/S can be considered in PM at multiple levels of context and recommend strategies for integrating R/S in PM. We conducted a descriptive, integrative literature review of R/S at the individual, institutional, and societal levels, with the aim of focusing on R/S factors with a high level of salience to PM. We discuss the utility of considering R/S in the suitability and uptake of PM prevention and treatment strategies by providing specific examples of how R/S influences health beliefs and practices at each level. We also propose future directions in research and practice to foster greater understanding and integration of R/S to enhance the acceptability and patient responsiveness of PM research approaches and clinical practices. Elucidating the context of R/S and its value to PM can advance efforts toward a more whole-person and patient-centered approach to improve individual and population health.

An Exploratory Analysis of the Role of Religion in Colorectal Cancer Screening among Safety-Net Clinic Patients.

Colorectal cancer (CRC) incidence among low income populations is disproportionate when compared to the general population. Cancer screening studies show religion as a potentially influential factor in individual screening. The present study was an exploratory analysis of religious involvement (RI) among older safety-net clinic patients who participated in 90-day follow up calls during an intervention trial. Results show RI among participants (n = 185) did not significantly predict nor was associated with screening for CRC (OR = 1.36, p = 0.35). The percentage of participants that self-identified as being highly religious differed across racial/ethnic groups (25% of Non-Hispanic Whites, 22% of Hispanics were highly religious when compared to 52% of Non-Hispanic Blacks). These findings raise questions about the use of religious appeals as part of health promotion for CRC screening and religious involvement among low-income patient populations. Varied religious beliefs across groups suggest while there may be room for including religion in CRC screening promotion targeted to some patients from low income groups, this appeal would not be suitable for other low-income patient sub-populations.

Reducing Low Birth Weight among African Americans in the Midwest: A Look at How Faith-Based Organizations Are Poised to Inform and Influence Health Communication on the Developmental Origins of Health and Disease (DOHaD).

Low birth weight (LBW) rates remain the highest among African Americans despite public health efforts to address these disparities; with some of the highest racial disparities in the Midwest (Kansas). The Developmental Origins of Health and Disease (DOHaD) perspective offers an explanation for how LBW contributes to racial health disparities among African Americans and informs a community directed health communication framework for creating sustainable programs to address these disparities. Trusted community organizations such as faith-based organizations are well situated to explain health communication gaps that may occur over the life course. These entities are underutilized in core health promotion programming targeting underserved populations and can prove essential for addressing developmental origins of LBW among African Americans. Extrapolating from focus group data collected from African American church populations as part of a social marketing health promotion project on cancer prevention, we theoretically consider how a similar communication framework and approach may apply to address LBW disparities. Stratified focus groups (n = 9) were used to discover emergent themes about disease prevention, and subsequently applied to explore how faith-based organizations (FBOs) inform strategic health care (media) advocacy and health promotion that potentially apply to address LBW among African Americans. We argue that FBOs are poised to meet health promotion and health communication needs among African American women who face social barriers in health.

A Prescription for Internet Access: Appealing to Middle-Aged and Older Racial and Ethnic Minorities Through Social Network Sites to Combat Colorectal Cancer.

The popularity and usage of social media networks or SNS (social networking sites) among American Internet users age 50 and over doubled between 2009 and 2010 and has steadily climbed. Part of this increased access may be the result of older adults who are living with a chronic disease and are reaching out for online support. Colorectal cancer (CRC) risk is among those concerns, particularly among middle-age and older minority populations where disparities exist. This exploratory study investigates information seeking behavior related to cancer factors (e.g. testing for colon cancer, cancer fatalism) and current social media usage among racial and ethnic minority groups (African American and Latinos) and Whites age 50 and older. The secondary data from the 2012 Health Information National Trends Survey (HINTS) was analyzed to compare these populations. Results show that African Americans and Latinos were only slightly more likely to use social network sites to seek out cancer information compared to Whites. However, Whites were more likely to use the Internet to seek health information compared to African Americans and Latinos. In this sample, Whites were also more likely to be informed by a physician about CRC testing (p <.01). Whites were also more fatalistic about CRC (p<.001) and more likely to have self-reported receiving a positive diagnosis (p <.001). Implications of this study suggest that use of both traditional health information sources (physician) and the Internet (social media networks, Internet sites) have increased among older Americans and can serve as critical channels for cancer information and education.

Marketing a Healthy Mind, Body, and Soul: An Analysis of How African American Men View the Church as a Social Marketer and Health Promoter of Colorectal Cancer Risk and Prevention.

The Centers for Disease Control and Prevention ranks colorectal cancer (CRC) as the third most commonly diagnosed cancer among men in the United States; African American (AA) men are at even greater risk. The present study was from a larger study that investigates the church's role as a social marketer of CRC risk and prevention messages, and whether religiously targeted and tailored health promotion materials will influence screening outcome. We used an integrated theoretical approach to explore participants' perceptions of CRC risk and prevention and how promotion messages should be developed and socially marketed by the church. Six focus groups were conducted with men from predominately AA churches in the Midwest. Themes from focus group discussions showed participants lacked knowledge about CRC, feared cancer diagnosis, and feared the procedure for screening. Roles of masculinity and the mistrust of physicians were also emergent themes. Participants did perceive the church as a trusted marketer of CRC but believed that promotional materials should be cosponsored and codeveloped by reputable health organizations. Employing the church as a social marketer of CRC screening promotion materials may be useful in guiding health promotions and addressing barriers that are distinct among African American men.

Employing the church as a marketer of cancer prevention: a look at a health promotion project aimed to reduce colorectal cancer among African Americans in the Midwest.

Health promotion programs designed to address colorectal cancer disparities among African Americans are increasing. Unfortunately, this group still shoulders a disproportionate mortality burden in the United States; these numbers are also reflective of colorectal cancer (CRC) disparities in the Midwest. The purpose of this study was to extrapolate results from in-depth interviews and brief surveys on the effectiveness of the church as a social marketer of CRC-prevention messages. Results show that pastors believe the congregation has limited knowledge about CRC risk and prevention; they also believe the church can improve cancer-prevention communication among members and those affiliated with the church.

Promoting healthy behavior from the pulpit: clergy share their perspectives on effective health communication in the African American church.

African Americans continue to suffer disproportionately from health disparities when compared to other ethnicities (ACS 2010; CDC 2007). Research indicates that the church and the pastor in the African American community could be enlisted to increase effectiveness of health programs (Campbell et al. in Health Edu Behav 34(6):864-880, 2007; DeHaven et al. in Am J Public Health 94(6):1030-1036, 2004). The objective of this study was to investigate African American pastors' perceptions about health promotion in the church and how these perceptions could serve as a guide for improving health communication targeting African Americans. Semi-structured interviews with African American clergy revealed that pastors feel strongly about the intersection of health, religion and spirituality; they also believe that discussing health screening and other health issues more frequently from the pulpit and their own personal experiences will ultimately impact health behavior among congregants. This study suggests that African American clergy see themselves as health promoters in the church and believe this communication (i.e., pastor-endorsed health information materials) will impact health behavior among underserved and minority populations.

Generating Conflict for Greater Good: Utilizing Contingency Theory to Assess Black and Mainstream Newspapers as Public Relations Vehicles to Promote Better Health among African Americans.

The potential use of strategic conflict management ( Wilcox and Cameron, 2006; Cameron, Wilcox, Reber and Shin ( in press) as a health advocacy tool in US African-American and mainstream newspapers, arguing that escalation of conflict can increase effectiveness of health-related news releases. For health communicators focusing on at-risk populations with poor health outcomes, such goals would include increased awareness of health problems and solutions, along with increased motivation arising from indignation over health disparities. Content analysis of 1,197 stories in 24 Black and 12 mainstream newspapers showed that more conflict factors were present in Black vs. mainstream newspapers, suggesting a way to strategically place health messages in news releases disseminated to newspapers that motivate at-risk publics to better health. The findings suggest that conflict factors such as racial disparity data regarding health issues may enhance media advocacy.