Using implementation science to evaluate a population-wide genomic screening program: Findings from the first 20,000 In Our DNA SC participants.

We use the implementation science framework RE-AIM (reach, effectiveness, adoption, implementation, and maintenance) to describe outcomes of In Our DNA SC, a population-wide genomic screening (PWGS) program. In Our DNA SC involves participation through clinical appointments, community events, or at home collection. Participants provide a saliva sample that is sequenced by Helix, and those with a pathogenic variant or likely pathogenic variant for CDC Tier 1 conditions are offered free genetic counseling. We assessed key outcomes among the first cohort of individuals recruited. Over 14 months, 20,478 participants enrolled, and 14,053 samples were collected. The majority selected at-home sample collection followed by clinical sample collection and collection at community events. Participants were predominately female, White (self-identified), non-Hispanic, and between the ages of 40-49. Participants enrolled through community events were the most racially diverse and the youngest. Half of those enrolled completed the program. We identified 137 individuals with pathogenic or likely pathogenic variants for CDC Tier 1 conditions. The majority (77.4%) agreed to genetic counseling, and of those that agreed, 80.2% completed counseling. Twelve clinics participated, and we conducted 108 collection events. Participants enrolled at home were most likely to return their sample for sequencing. Through this evaluation, we identified facilitators and barriers to implementation of our state-wide PWGS program. Standardized reporting using implementation science frameworks can help generalize strategies and improve the impact of PWGS.

Development of a Hereditary Breast and Ovarian Cancer and Genetics Curriculum for Community Health Workers: KEEP IT (Keeping Each other Engaged Program via IT) Community Health Worker Training.

We developed a curriculum for community health workers (CHWs) using an innovative, community-engaged focus group and Delphi process approach. Equipping CHWs with knowledge of hereditary breast and ovarian cancer syndrome (HBOC) and genetics could help enhance identification of women at risk for HBOC, referral, and navigation through genetic services. We conducted focus groups with five CHWs and a three-round Delphi process with eight experts. In the first round of the Delphi process, participants rated and commented on draft curriculum modules. The second round involved live video discussion to highlight points of confusion and concern in the modules. The curriculum was revised and refined based on quantitative and qualitative data and reassessed by the experts in Round 3. Ultimately, agreement was achieved on eight of 10 modules when assessing for clarity of learning objectives, seven out of 10 when assessing for adult learning theory, and nine out of 10 when assessing for participants' ability to learn desired knowledge. We plan to virtually deliver this curriculum to CHWs to enhance their HBOC and genomic competencies. By equipping CHWs to understand and participate in genomics education, we can enable more equitable participation in genomics-informed clinical care and research. Beyond this curriculum, the Delphi methodology can further be used to design content for new CHW curriculums.

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).

Applying the R = MC2 implementation science heuristic to assess the impact of readiness on reach and implementation of a population-wide genomic screening program.

Population-wide genomic screening for genes that have high penetrance and clinical actionability enhances the opportunity to identify individuals at risk for developing hereditary conditions. Organizational readiness has been shown to influence the likelihood of successful implementation of complex initiatives such as the integration of population-wide genomic screening in clinical settings. We use the organizational readiness heuristic R = MC2 to better understand three factors that influence readiness for implementation of In Our DNA SC, a population-wide genomic screening program: motivation to implement, general capacity of an organization, and innovation-specific capacities. We then assessed the influence of these readiness factors on implementation outcomes of reach (measured through enrollment rate) and implementation (measured through the number of DNA samples collected). Data were collected pre-implementation and captured during the three-month pilot phase of the In Our DNA SC program. We collected administrative data from the electronic health record and quantitatively captured elements of readiness through surveys distributed to provider champions and clinical administrative champions at the 10 sites implementing the population-wide genomic screening program. We facilitated innovation-specific capacity through training offered at each site, as well as technical assistance through weekly meetings with other implementing sites, and resources available to all staff. Forty percent of provider champions attended training and 80% of administrative champions attended training. An average of 3.7 additional staff were trained at each implementing site. Satisfaction with training positively influenced reach (ß = 0.0121, p = 0.0271) but did not impact implementation. Provider engagement (innovation capabilities) was associated with reach (ß = 0.0020, p = 0.0251) and clinical administrator engagement was associated with sample collection rate (ß = 0.2599, ß = 0.038). Readiness to change is considered one of the most important factors in understanding the potential opportunity for implementation. We found that motivation to adopt a population-wide genomic screening program positively impacted the program's reach. The type of champion influenced discrete outcomes, with provider champions positively impacting reach and administrative champions influencing implementation (assessed through sample collection rate). As genomics continues to be integrated into clinical practice, it will be important to understand the contextual factors that influence readiness for implementation and design support throughout the life-course of implementation to ensure the success of large-scale, complex initiatives.

Optimal Integration of Behavioral Medicine into Clinical Genetics and Genomics.

Clinical genetics and genomics will exert their greatest population impact by leveraging the rich knowledge of human behavior that is central to the discipline of behavioral medicine. We contend that more concerted efforts are needed to integrate these fields synergistically, and accordingly, we consider barriers and potential actions to hasten such integration.

Exploring the Role of Community Health Workers in Improving the Collection of Family Health History: A Pilot Study.

Community health workers (CHWs) have been successful partners in addressing public health and health care challenges but have yet to be engaged in efforts to promote family health history (FHH) collection. FHH information is a key factor in determining disease risk and supporting screening and prevention across multiple diseases. The collection of FHH information could be facilitated by the existing cadre of CHWs already working alongside clients and families. In this qualitative study, we interviewed 30 CHWs from Georgia to better understand the current level of knowledge about FHH, perceptions of how FHH collection aligns with their role, and barriers and facilitators in order to support more active involvement of CHWs in FHH collection. Interviews were completed, transcribed, and double coded by three study team members. More than half of CHWs reported knowing their own FHH information. CHWs showed a strong interest and support for collecting FHH in their job, despite limited current engagement in this role. CHWs acknowledged the collection of FHH as being an opportunity to empower clients to have conversations with their providers. To better support this work, CHWs requested training in using and integrating FHH tools into their workflow and support in communicating about FHH with their clients. Our findings suggest that with support and training, CHWs are uniquely positioned to improve FHH collection among their client base. Ultimately, improving FHH collection skills among the population could allow for better integration of risk-stratified approaches that are informed by FHH information for the prevention, management, and treatment of disease.

A thematic analysis of health information technology use among cancer genetic counselors.

As precision medicine becomes a mainstay in health care, the use of health information technology (IT) platforms will play an important role in the delivery of services across the cancer care continuum. Currently, there is both limited understanding about perceptions of health IT tools and barriers to their use among cancer genetic counselors. We assessed open-ended responses from a survey conducted among 128 board-certified cancer genetic counselors in the United States. We evaluated the utility of ten health IT tools and perceived barriers to adoption. Responses about characteristics of health IT tools that influence current use (i.e., technology-specific challenges) were deductively analyzed using the diffusion of innovations (DOI) characteristics. Responses about cancer genetic counselors' perceived challenges to adopting health IT tools (i.e., discipline-specific challenges) were inductively coded using a thematic approach. DOI innovation characteristics included mixed perceptions about the relative advantage, complexity, compatibility, trialability, and observability of tools based on the type of tool and perceived end-user. One-third of participants indicated that they were considering adopting or switching health IT tools. Common barriers to adoption included no perceived need for change, lack of organizational infrastructure, cost, and lack of decision-making power. Our findings indicate that addressing barriers to use and adoption of health IT may allow for expansion of these tools among cancer genetic counselors. Integrating health IT is critical for enhancing cancer genetic counselors' capacity to address patient needs and realizing the potential of precision medicine.

Hepatitis B Testing Among Vietnamese in Metropolitan Atlanta: The Role of Healthcare-Related and Acculturation-Related Factors.

BACKGROUND: Compared to other racial/ethnic groups, U.S. Vietnamese have higher Hepatitis B infection prevalence, which is a major liver cancer risk factor. Increased testing could reduce this disparity. It is critical to understand subgroups of U.S. Vietnamese least likely to have been tested for Hepatitis B and design appropriate interventions. We examined healthcare- and acculturation-related factors influencing Hepatitis B testing among U.S. Vietnamese. METHODS: Survey data of 100 U.S. Vietnamese attending health fairs/programs hosted by community-based organizations (2017-2018) were analyzed. Healthcare-related predictors included insurance and past 2-year checkup. Acculturation-related predictors included Vancouver Acculturation Index, percentage of lifetime in the U.S., and Vietnamese and English fluency. We conducted a multiple logistic regression controlling for age, sex, education, and household income. RESULTS: The sample was an average 37.5 years old and 61.6% female. Insurance coverage was reported by 83.0%. Average percentage of lifetime in the U.S. was 56.8%. Seventy percent reported having received Hepatitis B testing. Hepatitis B testing was associated with health insurance (aOR = 2.61, 95% CI = [1.05-6.47], p = .04) but not any acculturation-related predictors CONCLUSION: Improving insurance coverage and options can be a strategy to increase Hepatitis B testing among U.S. Vietnamese. More education regarding Hepatitis B (e.g., via community-based, culturally-appropriate, lay health worker-led programs) is needed to ensure that individuals are aware of their testing status and pursue appropriate healthcare decisions.

Evaluation and comparison of hereditary Cancer guidelines in the population.

BACKGROUND: Family health history (FHx) is an effective tool for identifying patients at risk of hereditary cancer. Hereditary cancer clinical practice guidelines (CPG) contain criteria used to evaluate FHx and to make recommendations for genetic consultation. Comparing different CPGs used to evaluate a common set of FHx provides insight into how well the CPGs perform, the extent of agreement across guidelines, and how well they identify patients who should consider a cancer genetic consultation. METHODS: We compare the American College of Medical Genetics and Genomics (ACMG) and the National Comprehensive Cancer Networks (NCCN) (2019) CPG criteria for FHx collected by a chatbot and evaluated by ontologies and web services in a previous study. Collected FHx met criteria from seven groups: Gene Mutation, Breast and Ovarian, Li-Fraumeni syndrome (LFS), Colorectal and Endometrial, Relative Meets Criteria, ACMG Only Criteria, and NCCN Testing. CPG Criteria were coded and matched across 12 ACMG sub-guidelines and 6 NCCN sub-guidelines for comparison purposes. RESULTS: The dataset contains 4915 records, of which 2221 met either ACMG or NCCN criteria and 2694 did not. There was significant overlap-1179 probands met both ACMG and NCCN criteria. The greatest similarities were for Gene Mutation and Breast and Ovarian criteria and the greatest disparity existed among Colorectal and Endometrial criteria. Only 156 positive gene mutations were reported and of the 2694 probands who did not meet criteria, 90.6% of them reported at least one cancer in their personal or family cancer history. CONCLUSION: Hereditary cancer CPGs are useful for identifying patients at risk of developing cancer based on FHx. This comparison shows that with the aid of chatbots, ontologies, and web services, CPGs can be more efficiently applied to identify patients at risk of hereditary cancer. Additionally this comparison examines similarities and differences between ACMG and NCCN and shows the importance of using both guidelines when evaluating hereditary cancer risk.

Adherence to Mammography and Pap Screening Guidelines Among Medically Underserved Women: the Role of Family Structures and Network-Level Behaviors.

Poor adherence to screening recommendations is an important contributing factor to disparities in breast and cervical cancer outcomes among women in the USA. Screening behaviors are multifactorial, but there has been limited focus on how family network beliefs and behaviors influence individual's likelihood to complete screening. This research aims to fill this gap by evaluating the role of family network composition and screening behaviors on women's likelihood to adhere to mammogram and pap screening recommendations. We used an ego network approach to analyze data from 137 families and their networks. Primary outcomes were whether an individual had received a mammogram in the past year and whether she had received a pap screening in the past 3 years. Network-level predictors included network composition (size of network, average age of network members, satisfaction with family communication) and network screening behaviors. We conducted multivariable logistic regressions to assess the influence of network-level variables on both mammogram and pap smears, adjusting for potential individual-level confounders. Each network had an average age of 47.9 years, and an average size of 3.05 women, with the majority of members being sisters (57.7%). We found differences in network screening behaviors by race, with Arab networks being less likely to have completed self-breast exams (OR = 0.21, 95%CI = 0.05-0.76, p = 0.02), ever a gotten pap screen (OR = 0.11, 95%CI = 0.01-0.85, p = 0.04), and gotten pap screening in the last 3 years (OR = 0.31, 95%CI = 0.10-0.99, p = 0.04) compared with African American networks. Network screening behaviors also strongly influenced the likelihood of an individual completing a similar screening behavior. This analysis sheds light on family network characteristics that influence screening behaviors among medically underserved women. These findings support the development and dissemination of screening interventions among female's family networks.

Correction to: Communication about Hereditary Cancers on Social Media: a Content Analysis of Tweets about Hereditary Breast and Ovarian Cancer and Lynch Syndrome.

The original version of this article unfortunately contained mistakes.

Communication About Hereditary Cancers on Social Media: A Content Analysis of Tweets About Hereditary Breast and Ovarian Cancer and Lynch Syndrome.

Social media is increasingly being used as an information source and tool for individuals and organizations to share resources and engage in conversations about health topics. Because the public tends to learn about health topics and genetics from online social media sources, it is imperative to understand the amount, type, and quality of information being shared. We performed a retrospective analysis of tweets related to hereditary breast and ovarian cancer (HBOC) and Lynch syndrome (LS) between January 1, 2017 and December 31, 2017. A total of 63,770 tweets were included in our dataset. The majority were retweets (59.9%) and users came from 744 different cities. Most tweets were considered "informational" (51.4%) and were designed to provide resources to the public. Online communities (25%), organizations (20%), and providers or researchers (15%) were among the most common contributors. Our results demonstrated that conversations were primarily focused on information and resource sharing, along with individuals discussing their personal stories and testimonials about their experiences with these HBOC and LS. Future studies could consider ways to harness Twitter to help tailor and deliver health communication campaigns and education interventions to improve the public's understanding of these complex topics.

Associations Between Objective Television Exposure and Cancer Perceptions in a National Sample of Adults.

The expanding sources of media coverage of cancer may have a powerful impact on emotions, cancer knowledge, information seeking, and other health behaviors. We explored whether television advertisements were associated with cancer worry, perceived risk, and perceived ability to prevent cancer using cross-sectional data from the Health Information National Trends Survey (HINTS) linked to television advertisement data from Kantar Media. We conducted hierarchical linear modeling assessing 2-level models for each of the 3 outcomes of interest. The most common content included advertisements for cancer clinics (54.4%), public service announcements about cancer (22.0%), and advertisements about cancer organizations (9.1%). Most variance in cancer perceptions was due to individual-level characteristics and not exposure to television advertisements, which aligns with previous literature suggesting a small, but significant, association of television exposure with health beliefs. Higher levels of exposures to cancer-specific television advertisements were associated with higher levels of risk perceptions. Additionally, older adults' levels of perceived worry and risk were more likely to be associated with television exposure than younger adults. Given the substantial investments being made in cancer advertisements on television, the differences in exposure are important to consider in future efforts to understand predictors of beliefs about cancer and in the development of interventions designed to target risk-reducing behaviors.

Is Theory Guiding Our Work? A Scoping Review on the Use of Implementation Theories, Frameworks, and Models to Bring Community Health Workers into Health Care Settings.

Community health workers (CHWs) are becoming a well-recognized workforce to help reduce health disparities and improve health equity. Although evidence demonstrates the value of engaging CHWs in health care teams, there is a need to describe best practices for integrating CHWs into US health care settings. The use of existing health promotion and implementation theories could guide the research and implementation of health interventions conducted by CHWs. We conducted a standard 5-step scoping review plus stakeholder engagement to provide insight into this topic. Using PubMed, EMBASE, and Web of Science, we identified CHW intervention studies in health care settings published between 2000 and 2017. Studies were abstracted by 2 researchers for characteristics and reported use of theory. Our final review included 50 articles published between January 2000 and April 2017. Few studies used implementation theories to understand the facilitators and barriers to CHW integration. Those studies that incorporated implementation theories used RE-AIM, intervention mapping, cultural tailoring, PRECEDE-PROCEED, and the diffusion of innovation. Although most studies did not report using implementation theories, some constructs of implementation such as fidelity or perceived benefits were assessed. In addition, studies that reported intervention development often cited specific theories, such as the transtheoretical or health belief model, that helped facilitate the development of their program. Our results are consistent with other literature describing poor uptake and use of implementation theory. Further translation of implementation theories for CHW integration is recommended.

Community Health Workers in the United States: Challenges in Identifying, Surveying, and Supporting the Workforce.

Community health workers (CHWs) are members of a growing profession in the United States. Studying this dynamic labor force is challenging, in part because its members have more than 100 different job titles. The demand for timely, accurate information about CHWs is increasing as the profession gains recognition for its ability to improve health outcomes and reduce costs. Although numerous surveys of CHWs have been conducted, the field lacks well-delineated methods for gaining access to this hard-to-identify workforce. We outline methods for surveying CHWs and promising approaches to engage the workforce and other stakeholders in conducting local, state, and national studies. We also highlight successful strategies to overcome challenges in CHW surveys and future directions for surveying the field.

Community Health Workers: An Untapped Resource to Promote Genomic Literacy.

Poor understanding of gene-environment contributors to health conditions can lead the public to misinterpretations that overemphasize genetics as determinants of health. The present commentary calls for engaging the national community health worker (CHW) workforce to use community elicitation methods such as mental models approaches as a means to enhance the public's literacy regarding genetic and environmental or genomic contributions to health. We discuss three needs related to genomic literacy and suggest how CHWs are uniquely positioned to address these needs among diverse target audiences. We conclude by offering directions for the future of CHWs working to build genomic literacy.

Community Health Workers as Allies in Hypertension Self-Management and Medication Adherence in the United States, 2014.

INTRODUCTION: Rates of hypertension control remain low among underserved populations in the United States; moreover, disparities in hypertension-related cardiovascular disease death are increasing. Community health workers (CHWs) can address barriers to hypertension control among underrepresented and diverse populations. We identify unique roles CHWs play in hypertension self-management and medication adherence. METHODS: In 2014, we conducted a mixed methods study with an online survey of 265 CHWs and 23 telephone interviews. The survey and interview guide contained questions about CHWs' roles in hypertension self-management and hypertension medication adherence. We used descriptive statistics to analyze survey data and used inductive thematic analysis for the qualitative data. RESULTS: CHWs described working in partnership with patients and various health care providers to assist people in hypertension self-management. Roles were flexible and multifaceted but patient-driven. CHWs used various delivery methods to assist patients in overcoming barriers to medication adherence. CHWs interacted with patients primarily through individual clinical sessions or home visits. On average, they visit about 8 times per month, about 40 minutes per visit, over 7 months. CHWs often addressed barriers related to medicine-taking and refills and support patient-provider communications. CONCLUSION: Results from this study will help health care professionals, policy makers, and academics better understand the work of CHWs. CHWs are important provider allies for improving hypertension prevention and self-management, especially among underserved and diverse populations in the United States.

Strategies to Improve the Integration of Community Health Workers Into Health Care Teams: "A Little Fish in a Big Pond".

INTRODUCTION: The Patient Protection and Affordable Care Act acknowledges the value of community health workers (CHWs) as frontline public health workers. Consequently, growing attention has been placed on promoting CHWs as legitimate partners to provide support to health care teams and patients in the prevention, management, and control of chronic disease, particularly among diverse populations and high-need individuals. METHODS: Using a mixed-methods research approach, we investigated the integration of CHWs into health care teams from the CHW perspective. We conducted a survey of 265 CHWs and interviews with 23 CHWs to better understand and describe their experience and their perceived opportunities and challenges regarding their integration within the context of health care reform. RESULTS: Feelings of organizational support were positively correlated with the number of CHWs in the organization. CHWs reported the following facilitators to integration: having team meetings (73.7%), training inside (70.4%) and outside of the organization (81.6%), access to electronic health records, and ability for CHWs to stay connected to the community. CONCLUSION: The perspectives of CHWs on their positive and negative experiences offer useful and innovative insight into ways of maximizing their impact on the health care team, patients, and their role as key emissaries between clinical services and community resources.