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The AMIA 2003 Spring Congress entitled 'Bridging the Digital Divide: Informatics and Vulnerable Populations' convened 178 experts including medical informaticians, health care professionals, government leaders, policy makers, researchers, health care industry leaders, consumer advocates, and others specializing in health care provision to underserved populations. The primary objective of this working congress was to develop a framework for a national agenda in information and communication technology to enhance the health and health care of underserved populations. Discussions during four tracks addressed issues and trends in information and communication technologies for underserved populations, strategies learned from successful programs, evaluation methodologies for measuring the impact of informatics, and dissemination of information for replication of successful programs. Each track addressed current status, ideal state, barriers, strategies, and recommendations. Recommendations of the breakout sessions were summarized under the overarching themes of Policy, Funding, Research, and Education and Training. The general recommendations emphasized four key themes: revision in payment and reimbursement policies, integration of health care standards, partnerships as the key to success, and broad dissemination of findings including specific feedback to target populations and other key stakeholders. [ABSTRACT FROM AUTHOR]

A panel was convened at the American Medical Informatics Association Spring Congress to discuss issues and opportunities that arise when informatics methods, theories, and applications are applied to public health functions. Panelists provided examples of applications that connect efforts between public health and clinical care, emphasizing the need for integration of clinical data with public health data and the analysis of those data to support surveillance and informed decision making. Benefits to be gained by both medical informatics and public health at the interface were evident; both encounter the same major issues including privacy, systems integration, standards, and many more. [ABSTRACT FROM AUTHOR]

The American Medical Informatics Association 2001 Spring Congress brought together the public health and informatics communities to develop a national agenda for public health informatics. Discussions on funding and governance; architecture and infrastructure; standards and vocabulary; research, evaluation, and best practices; privacy, confidentiality, and security; and training and workforce resulted in 74 recommendations with two key themes: (1) all stakeholders need to be engaged in coordinated activities related to public health information architecture, standards, confidentiality, best practices, and research and (2) informatics training is needed throughout the public health workforce. Implementation of this consensus agenda will help promote progress in the application of information technology to improve public health. [ABSTRACT FROM AUTHOR]

OBJECTIVE: To explore pediatric providers' perceived barriers to influenza vaccine delivery, and desired characteristics and potential concerns regarding an influenza vaccine alert integrated into the electronic health record (EHR). METHODS: Four focus groups with providers (n=21) and five individual interviews with practice leaders in an urban, pediatric primary care network affiliated with an academic medical center in New York City were conducted. Data were collected during the 2009-10 influenza season and analyzed using thematic analysis. RESULTS: Participants identified several barriers to influenza vaccine delivery, including remembering to vaccinate during sick visits, need to review multiple sources of immunization information, time shortages and inadequate staffing. They felt that an alert could help many of these challenges. They desired the following alert characteristics: 1) alerting providers early in the visit, 2) accurately determining patients' vaccine status by merging multiple sources of immunization information, 3) facilitating vaccine ordering, and 4) generating appropriate documentation in the EHR when vaccines were refused or otherwise not given. Potential concerns regarding the alert included reliability and accuracy of alert, workflow interruptions and forced actions. CONCLUSIONS: This study highlights providers' interest in a well-integrated, accurate alert that streamlines assessment of vaccination eligibility, ordering and documentation without impeding work-flow. [ABSTRACT FROM AUTHOR]

Introduction: Orthodox Jewish women face unique social, cultural, and religious factors that may influence uptake of BRCA1/2 genetic testing. We examined the impact of a web-based decision aid (DA) on BRCA1/2 genetic testing intention/completion among Orthodox Jewish women. We conducted a single-arm pilot study among 50 Orthodox Jewish women who were given access to a web-based DA entitled RealRisks and administered serial surveys at baseline and 1 and 6 months after exposure to the DA. Descriptive statistics were conducted for baseline characteristics and study measures. Comparisons were made to assess changes in study measures over time. Fifty Orthodox Jewish women enrolled in the study with a mean age of 43.9 years (standard deviation [SD] 14.6), 70% Modern Orthodox, 2% with personal history of breast cancer, and 68% and 16% with a family history of breast or ovarian cancer, respectively. At baseline, 27 (54%) participants intended to complete genetic testing. Forty-three participants (86%) completed RealRisks and the 1-month survey and 38 (76%) completed the 6-month survey. There was a significant improvement in BRCA1/2 genetic testing knowledge and decrease in decisional conflict after exposure to the DA. At 1 month, only 20 (46.5%) completed or intended to complete genetic testing (p = 0.473 compared to baseline). While the DA improved genetic testing knowledge and reduced decisional conflict, genetic testing intention/completion did not increase over time. Future interventions should directly address barriers to BRCA1/2 genetic testing uptake and include input from leaders in the Orthodox Jewish community., Gov Id: NCT03624088 (8/7/18)., (© 2024. The Author(s), under exclusive licence to Springer Nature B.V.)

Background: Women with high-risk breast lesions, such as atypical hyperplasia (AH) or lobular carcinoma in situ (LCIS), have a 4- to tenfold increased risk of breast cancer compared to women with non-proliferative breast disease. Despite high-quality data supporting chemoprevention, uptake remains low. Interventions are needed to break down barriers., Methods: The parent trial, MiCHOICE, is a cluster randomized controlled trial evaluating the effectiveness and implementation of patient and provider decision support tools to improve informed choice about chemoprevention among women with AH or LCIS. For this pre-implementation analysis, 25 providers participated in semi-structured interviews prior to accessing decision support tools. Interviews sought to understand attitudes/beliefs and barriers/facilitators to chemoprevention., Results: Interviews with 25 providers (18 physicians and 7 advanced practice providers) were included. Providers were predominantly female (84%), white (72%), and non-Hispanic (88%). Nearly all providers (96%) had prescribed chemoprevention for eligible patients. Three themes emerged in qualitative analysis. The first theme describes providers' confidence in chemoprevention and the utility of decision support tools. The second theme elucidates barriers to chemoprevention, including time constraints, risk communication and perceptions of patients' fear of side effects and anxiety. The third theme is the need for early implementation of decision support tools., Conclusions: This qualitative study suggests that providers were interested in the early inclusion of decision aids (DA) in their chemoprevention discussion workflow. The DAs may help overcome certain barriers which were elucidated in these interviews, including patient level concerns about side effects, clinic time constraints and difficulty communicating risk. A multi-faceted intervention with a DA as one active component may be needed., Trial Registration: This trial was registered with the NIH clinical trial registry, clinicaltrials.gov, NCT04496739., (© 2024. The Author(s).)

Retrospective case studies are one approach to help identify processes underlying the translation of successful health interventions. This case study investigates the development of RealRisks and Breast Cancer Risk Navigation ( BNAV ), decision support tools for breast cancer risk assessment, and risk-stratified prevention. Following a recently developed protocol for retrospective translational science case studies, we examined the career trajectory of Dr Katherine Crew as she expanded from basic science to interdisciplinary, patient-oriented research in oncology and began collaboration with Dr Rita Kukafka, a public health informatician focused on communicating risk. Data collection methods included key informant interviews and examination of peer-reviewed publications, funded grants, and news articles associated with the research. Data were analyzed to identify key milestones in the development of RealRisks and BNAV and to elucidate facilitators and barriers to the translational process. Facilitators to translation included funding and infrastructure provided by a Clinical and Translational Science Award (CTSA), the creation of an interdisciplinary team, and broad support from stakeholders including patient advocacy groups. Barriers to translation included limited mid-career support, ongoing costs for technology, and the time required to establish interdisciplinary, team science efforts. The findings reported here can be used to inform ongoing efforts to develop a more robust science of translation., Competing Interests: Harold Pincus serves on the clinical advisory committee for AbleTo and is a consultant for the National Committee for Quality Assurance. The other authors have no conflicts of interest to declare., (© The Author(s) 2024.)

Research on polygenic risk scores (PRSs) for common, genetically complex chronic diseases aims to improve health-related predictions, tailor risk-reducing interventions, and improve health outcomes. Yet, the study and use of PRSs in clinical settings raise equity, clinical, and regulatory challenges that can be greater for individuals from historically marginalized racial, ethnic, and other minoritized communities. As part of the National Human Genome Research Institute-funded Electronic Medical Records and Genomics IV Network, we conducted online focus groups with patients/community members, clinicians, and members of institutional review boards to explore their views on key issues, including PRS research, return of PRS results, clinical translation, and barriers and facilitators to health behavioral changes in response to PRS results. Across stakeholder groups, our findings indicate support for PRS development and a strong interest in having PRS results returned to research participants. However, we also found multi-level barriers and significant differences in stakeholders' views about what is needed and possible for successful implementation. These include researcher-participant interaction formats, health and genomic literacy, and a range of structural barriers, such as financial instability, insurance coverage, and the absence of health-supporting infrastructure and affordable healthy food options in poorer neighborhoods. Our findings highlight the need to revisit and implement measures in PRS studies (e.g., incentives and resources for follow-up care), as well as system-level policies to promote equity in genomic research and health outcomes., Competing Interests: Declaration of interests M.S. is a member of the Institutional Review Board of the All of Us Research Program. Wendy Chung is on the Board of Directors for Prime Medicine and Rallybio., (Copyright © 2024 The Authors. Published by Elsevier Inc. All rights reserved.)

Introduction: Although the prevalence of a pathogenic variant in the BRCA1 and BRCA2 genes is about 1:400 (0.25%) in the general population, the prevalence is as high as 1:40 (2.5%) among the Ashkenazi Jewish population. Despite cost-effective preventive measures for mutation carriers, Orthodox Jews constitute a cultural and religious group that requires different approaches to BRCA1 and BRCA2 genetic testing relative to other groups. This study analyzed a dialog of key stakeholders and community members to explore factors that influence decision-making about BRCA1 and BRCA2 genetic testing in the New York Orthodox Jewish community., Methods: Qualitative research methods, based on Grounded Theory and Narrative Research, were utilized to analyze the narrative data collected from 49 key stakeholders and community members. A content analysis was conducted to identify themes; inter-rater reliability was 71%., Results: Facilitators of genetic testing were a desire for preventive interventions and education, while barriers to genetic testing included negative emotions, feared impact on family/romantic relationships, cost, and stigma. Views differed on the role of religious leaders and healthcare professionals in medical decision-making. Education, health, and community were discussed as influential factors, and concerns were expressed about disclosure, implementation, and information needs., Conclusion: This study elicited the opinions of Orthodox Jewish women (decision-makers) and key stakeholders (influencers) who play critical roles in the medical decision-making process. The findings have broad implications for engaging community stakeholders within faith-based or culturally distinct groups to ensure better utilization of healthcare services for cancer screening and prevention designed to improve population health., (© 2024 The Author(s). Published by S. Karger AG, Basel.)

Breast cancer chemoprevention with selective estrogen receptor modulators (SERM) or aromatase inhibitors (AI) remains underutilized among high-risk women. A potential barrier to chemoprevention is competing comorbidities such as atherosclerotic cardiovascular disease (ASCVD), due to concern for additional medication side effects. We conducted a retrospective cohort study among women with atypical hyperplasia (AH) or lobular carcinoma in situ (LCIS), an important target population for chemoprevention. We compared risks for breast cancer and ASCVD, as well as use of SERMs/AIs versus statins among high-risk women (defined as a 5-year invasive breast cancer risk ≥1.67% and 10-year ASCVD risk ≥7.5%, respectively). We used clinical data extracted from the electronic health record to calculate breast cancer risk according to the Breast Cancer Surveillance Consortium model and ASCVD risk according to the 2013 American College of Cardiology/American Heart Association risk calculator. Among 298 evaluable women, mean age was 58.2 years (SD, 8.34), with 33% non-Hispanic White, 41% Hispanic, 9% non-Hispanic Black, 6% Asian, and 11% other/unknown race/ethnicity. About 98% of women met high-risk criteria for breast cancer, whereas 30% were high-risk for ASCVD. Mean 10-year risk of breast cancer was higher than mean 10-year risk of ASCVD (9.14% vs. 6.69%; P < 0.001). Among women who met high-risk criteria for both diseases, use of statins was higher compared with SERMs/AIs (58% vs. 21%; P < 0.001). Among women with AH or LCIS, statin use was higher compared with breast cancer chemoprevention among eligible women, despite having a higher mean risk of breast cancer than ASCVD., Prevention Relevance: Among women with high-risk breast lesions, mean absolute risk of breast cancer was higher compared with cardiovascular disease; however, statin use was significantly higher than chemoprevention. To address underutilization of breast cancer chemoprevention, these drugs should be placed in the context of medications used to prevent other chronic diseases., (©2023 American Association for Cancer Research.)

Purpose: Implementation of routine financial screening is a critical step toward mitigating financial toxicity. We evaluated the feasibility, sustainability, and acceptability of systematic financial screening in the outpatient breast oncology clinic at a large, urban cancer center., Methods: We developed and implemented a stakeholder-informed process to systematically screen for financial hardship and worry. A 2-item assessment in English or Spanish was administered to patients through the electronic medical record portal or using paper forms. We evaluated completion rates and mode of completion. Through feedback from patients, clinicians, and staff, we identified strategies to improve completion rates and acceptability., Results: From March, 2021, to February, 2022, 3,500 patients were seen in the breast oncology clinic. Of them, 39% (n = 1,349) responded to the screening items, either by paper or portal, 12% (n = 437) preferred not to answer, and the remaining 49% (n = 1,714) did not have data in their electronic health record, meaning they were not offered screening or did not complete the paper forms. Young adults (18-39 years) were more likely to respond compared with patients 70 years or older (61% v 30%, P < .01). English-preferring patients were more likely to complete the screening compared with those who preferred Spanish (46% v 28%, P < .01). Non-Hispanic White patients were more likely to respond compared with Non-Hispanic Black patients and with Hispanic patients (46% v 39% v 32%, P < .01). Strategies to improve completion rates included partnering with staff to facilitate paper form administration, optimizing patient engagement with the portal, and clearly communicating the purpose of the screening., Conclusion: Systematic financial screening is feasible, and electronic data capture facilitates successful implementation. However, inclusive procedures that address language and technology preferences are needed to optimize screening.

Objective: To determine if the Conexion digital localized health information resource about diabetes and depression could increase patient activation among Hispanic low-income adults., Materials and Methods: A nonblinded randomized controlled trial was conducted (NCT03984929). Participants at least 18 years old living in Washington Heights/Inwood, New York, were recruited from the community between July 2019 and August 2020 and randomized 1:1 to either the intervention group (localization of MedlinePlus resources customized with community components) or the control group (no localized community components). The primary outcome, patient activation, and secondary outcomes, knowledge, self-efficacy, and behavior change, were collected through surveys at 1-month follow-up., Results: Of the 134 participants recruited, 50.7% (n = 68) completed the 1-month follow-up. We found no statistically significant differences in the sociodemographic and baseline characteristics between those who missed the 1-month survey and those who completed it. No significant differences were observed in patient activation at 1-month. However, patient activation among all participants (n = 68) significantly increased (P = .048). Statistically significant improvements were also found in self-efficacy (P < .03). In multivariate analysis, birth country outside the United States and higher self-rated attachment to the community emerged as significant predictors of higher patient activation scores., Discussion: While the trial did not detect significant differences between groups, all participants demonstrated increased patient activation scores and improved secondary outcomes. While other factors may have contributed to this increase, our study suggests that access to carefully selected high-quality health information materials delivered digitally in the context of a community may result in improvements comparable to localized content in a hard-to-reach urban Hispanic population., Conclusions: Our study highlights the potential of making carefully selected digital information accessible to hard-to-reach communities., (© The Author(s) 2022. Published by Oxford University Press on behalf of the American Medical Informatics Association. All rights reserved. For permissions, please email: journals.permissions@oup.com.)

A cross-sectional survey was conducted among high-risk, racially/ethnically diverse adults at the point in time when New York City (NYC) became the COVID-19 pandemic's global epicenter. The study objective was to assess the threat and coping appraisals (cognitive factors known to correspond with people's willingness to adopt behaviorally focused interventions) and levels of distress, anxiety, and intolerance for uncertainty (emotional factors). Survey respondents were recruited in April 2020 using an online survey with unpaid recruitment on the GetHealthyHeights.org community-oriented website. We also recruited participants that engaged in previous research studies to gain survey responses from community members at higher risk for COVID-19 complications due to comorbidities compared to the general population. Analysis was performed to test for differences in survey responses by comorbidities, age, race, ethnicity, and employment status. Results show that the devastating effects of the pandemic appear to have uniquely impacted minority respondents, who reported significantly higher levels of anxiety and were significantly more likely to report having little control over whether they will get COVID-19 compared with White/non-Hispanic respondents. Minority respondents also had significantly higher mean scores on the behaviorally focused dimension of the intolerance of uncertainty (IU) scale, which measures avoidance and paralysis in the face of uncertainty. In multivariate analysis, IU predicted anxiety levels, and this association was not mediated by cognitive factors (threat and coping appraisals). By conducting this survey early in the pandemic, our study uniquely evaluated cognitive and emotional factors among a racially/ethnically diverse group of NYC residents during the height of the COVID-19 pandemic. Our findings suggest the need to acknowledge the disparities that appear to exist in pandemic response and for culturally tailored messaging and interventions. Few studies have reported differences by race and ethnicity during pandemic exposure. Therefore, further research on factors that may influence pandemic response among minority populations is needed., Competing Interests: Competing interestsThe authors declare no competing interests., (© The Author(s) 2023.)

Introduction: In 2009, the U.S. Preventive Services Task Force updated recommended mammography screening frequency from annual to biennial for average-risk women aged 50-74 years. The association between estimated breast cancer risk and mammography screening frequency was evaluated., Methods: A single-center retrospective cohort study was conducted among racially/ethnically diverse women, aged 50-74 years, who underwent screening mammography from 2014 to 2018. Data on age, race/ethnicity, first-degree family history of breast cancer, previous benign breast biopsies, and mammographic density were extracted from the electronic health record to calculate Breast Cancer Surveillance Consortium 5-year risk of invasive breast cancer, with a 5-year risk ≥1.67% defined as high risk. Multivariable analyses were conducted to determine the association between breast cancer risk factors and mammography screening frequency (annual versus biennial). Data were analyzed from 2020 to 2022., Results: Among 12,929 women with a mean age of 61±6.9 years, 82.7% underwent annual screening mammography, and 30.7% met high-risk criteria for breast cancer. Hispanic women were more likely to screen annually than non-Hispanic Whites (85.0% vs 79.8%, respectively), despite fewer meeting high-risk criteria. In multivariable analyses adjusting for breast cancer risk factors, high- versus low/average-risk women (OR=1.17; 95% CI=1.04, 1.32) and Hispanic versus non-Hispanic White women (OR=1.46; 95% CI=1.29, 1.65) were more likely to undergo annual mammography., Conclusions: A majority of women continue to undergo annual screening mammography despite only a minority meeting high-risk criteria, and Hispanic women were more likely to screen annually despite lower overall breast cancer risk. Future studies should focus on the implementation of risk-stratified breast cancer screening strategies., (Copyright © 2022 American Journal of Preventive Medicine. Published by Elsevier Inc. All rights reserved.)

Background: Dense breast notification (DBN) legislation aims to increase a woman's awareness of her personal breast density and the implications of having dense breasts for breast cancer detection and risk. This information may adversely affect women's breast cancer worry, perceptions of risk, and uncertainty about screening, which may persist over time or vary by sociodemographic factors. We examined short- and long-term psychological responses to DBN and awareness of breast density (BD)., Methods: In a predominantly Hispanic New York City screening cohort (63% Spanish-speaking), ages 40-60 years, we assessed breast cancer worry, perceived breast cancer risk, and uncertainties about breast cancer risk and screening choices, in short (1-3 months)- and long-term (9-18 months) surveys following the enrollment screening mammogram (between 2016 and 2018). We compared psychological responses by women's dense breast status (as a proxy for DBN receipt) and BD awareness and examined multiplicative interaction by education, health literacy, nativity, and preferred interview language., Results: In multivariable models using short-term surveys, BD awareness was associated with increased perceived risk (odds ratio (OR) 2.27, 95% confidence interval (CI) 0.99, 5.20 for high, OR 2.19, 95% CI 1.34, 3.58 for moderate, vs. low risk) in the overall sample, and with increased uncertainty about risk (OR 1.97 per 1-unit increase, 95% CI 1.15, 3.39) and uncertainty about screening choices (OR 1.73 per 1-unit increase, 95% CI 1.01, 2.9) in Spanish-speaking women. DBN was associated with decreased perceived risk among women with at least some college education (OR 0.32, 95% CI 0.11, 0.89, for high, OR 0.50, 95% CI 0.29, 0.89, for moderate vs. low risk), while those with a high school education or less experienced an increase (OR 3.01, 95% CI 1.05, 8.67 high vs. low risk). There were no associations observed between DBN or BD awareness and short-term breast cancer worry, nor with any psychological outcomes at long-term surveys., Conclusions: Associations of BD awareness and notification with breast cancer-related psychological outcomes were limited to short-term increases in perceived breast cancer risk dependent on educational attainment, and increases in uncertainty around breast cancer risk and screening choices among Spanish-speaking women., (© 2022. The Author(s).)

Significant underutilization of breast cancer chemoprevention remains, despite guidelines stating that physicians should recommend chemoprevention with antiestrogen therapy to high-risk women. We randomized women, ages 35 to 75 years, who met high-risk criteria for breast cancer, without a personal history of breast cancer or prior chemoprevention use, to standard educational materials alone or combined with a web-based decision aid. All healthcare providers, including primary care providers and breast specialists, were given access to a web-based decision support tool. The primary endpoint was chemoprevention uptake at 6 months. Secondary outcomes included decision antecedents (perceived breast cancer risk/worry, chemoprevention knowledge, self-efficacy) and decision quality (decision conflict, chemoprevention informed choice) based upon patient surveys administered at baseline, 1 and 6 months after randomization. Among 282 evaluable high-risk women enrolled from November 2016 to March 2020, mean age was 57 years (SD, 9.9) and mean 5-year invasive breast cancer risk was 2.98% (SD, 1.42). There was no significant difference in chemoprevention uptake at 6 months between the intervention and control groups (2.1% vs. 3.5%). Comparing the intervention and control arms at 1 month, there were significant differences among high-risk women in accurate breast cancer risk perceptions (56% vs. 39%, P = 0.017), adequate chemoprevention knowledge (49% vs. 27%, P < 0.001), mean decision conflict (34.0 vs. 47.0, P < 0.001), and informed choice (41% vs. 23%, P = 0.003). These differences were no longer significant at 6 months. Although our decision support tools did not result in a significant increase in chemoprevention uptake, we did observe improvements in decision antecedents and decision quality measures., Prevention Relevance: In this randomized controlled trial of decision support for 300 high-risk women and 50 healthcare providers, we did not observe a significant increase in chemoprevention uptake, which remained low at under 5%. However, these decision support tools may increase knowledge and informed choice about breast cancer chemoprevention., (©2022 American Association for Cancer Research.)

Background: Chemoprevention with anti-estrogens, such as tamoxifen, raloxifene or aromatase inhibitors, have been shown to reduce breast cancer risk in randomized controlled trials; however, uptake among women at high-risk for developing breast cancer remains low. The aim of this study is to identify provider-related barriers to shared decision-making (SDM) for chemoprevention in the primary care setting., Methods: Primary care providers (PCPs) and high-risk women eligible for chemoprevention were enrolled in a pilot study and a randomized clinical trial of web-based decision support tools to increase chemoprevention uptake. PCPs included internists, family practitioners, and gynecologists, whereas patients were high-risk women, age 35-75 years, who had a 5-year invasive breast cancer risk ≥ 1.67%, according to the Gail model. Seven clinical encounters of high-risk women and their PCPs who were given access to these decision support tools were included in this study. Audio-recordings of the clinical encounters were transcribed verbatim and analyzed using grounded theory methodology., Results: Six primary care providers, of which four were males (mean age 36 [SD 6.5]) and two were females (mean age 39, [SD 11.5]) and seven racially/ethnically diverse high-risk female patients participated in this study. Qualitative analysis revealed three themes: (1) Competing demands during clinical encounters; (2) lack of knowledge among providers about chemoprevention; and (3) limited risk communication during clinical encounters., Conclusions: Critical barriers to SDM about chemoprevention were identified among PCPs. Providers need education and resources through decision support tools to engage in risk communication and SDM with their high-risk patients, and to gain confidence in prescribing chemoprevention in the primary care setting., (© 2022. The Author(s).)

Background: U.S. professional organizations have provided conflicting recommendations on annual vs. biennial mammography screening. Potential harms of more frequent screening include increased anxiety and costs of false positive results, including unnecessary breast biopsies and overdiagnosis., Objective: To characterize current practices and beliefs surrounding mammography screening frequency and perspectives on using risk-based screening to inform screening intervals., Design: Semi-structured interviews informed by the Consolidated Framework for Implementation Research (CFIR)., Participants: Patients, primary care providers (PCPs), third-party stakeholders (breast radiologists, radiology administrators, patient advocates)., Main Measures: Qualitative data, with a codebook developed based upon prespecified implementation science constructs., Key Results: We interviewed 25 patients, 11 PCPs, and eight key stakeholders, including three radiologists, two radiology administrators, and three patient advocates. Most patients reported having annual mammograms, however, half believed having mammograms every two years was acceptable. Some women were worried early breast cancer would be missed if undergoing biennial screening. PCPs were equally split between recommending annual and biennial mammograms. Although PCPs were interested in using breast cancer risk models to inform screening decisions, concerns raised include time burden and lack of familiarity with breast cancer risk assessment tools. All breast radiologists believed patients should receive annual mammograms, while patient advocates and radiology administrators were split between annual vs. biennial. Radiologists were worried about missing breast cancer diagnoses when mammograms are not performed yearly. Patient advocates and radiology administrators were more open to biennial mammograms and utilizing risk-based screening., Conclusions: Uncertainty remains across stakeholder groups regarding appropriate mammogram screening intervals. Radiologists recommend annual mammography, whereas patients and PCPs were evenly split between annual vs. biennial screening, although both favored annual screening among higher-risk women. Breast cancer risk assessment tools may help facilitate decisions about screening intervals, but face barriers to widespread implementation in the primary care setting. These results will inform future implementation strategies to adopt risk-stratified breast cancer screening., (© 2022. The Author(s).)

Importance: To promote the identification of women carrying BRCA1/2 variants, the US Preventive Services Task Force recommends that primary care clinicians screen asymptomatic women for an increased risk of carrying a BRCA1/2 variant risk., Objective: To examine the effects of patient and clinician decision support about BRCA1/2 genetic testing compared with standard education alone., Design, Setting, and Participants: This clustered randomized clinical trial was conducted at an academic medical center including 67 clinicians (unit of randomization) and 187 patients. Patient eligibility criteria included women aged 21 to 75 years with no history of breast or ovarian cancer, no prior genetic counseling or testing for hereditary breast and ovarian cancer syndrome (HBOC), and meeting family history criteria for BRCA1/2 genetic testing., Interventions: RealRisks decision aid for patients and the Breast Cancer Risk Navigation Tool decision support for clinicians. Patients scheduled a visit with their clinician within 6 months of enrollment., Main Outcomes and Measures: The primary end point was genetic counseling uptake at 6 months. Secondary outcomes were genetic testing uptake at 6 and 24 months, decision-making measures (perceived breast cancer risk, breast cancer worry, genetic testing knowledge, decision conflict) based upon patient surveys administered at baseline, 1 month, postclinic visit, and 6 months., Results: From December 2018 to February 2020, 187 evaluable patients (101 in the intervention group, 86 in the control group) were enrolled (mean [SD] age: 40.7 [13.2] years; 88 Hispanic patients [46.6%]; 15 non-Hispanic Black patients [8.1%]; 72 non-Hispanic White patients [38.9%]; 35 patients [18.9%] with high school education or less) and 164 (87.8%) completed the trial. There was no significant difference in genetic counseling uptake at 6 months between the intervention group (20 patients [19.8%]) and control group (10 patients [11.6%]; difference, 8.2 percentage points; OR, 1.88 [95% CI, 0.82-4.30]; P = .14). Genetic testing uptake within 6 months was also statistically nonsignificant (13 patients [12.9%] in the intervention group vs 7 patients [8.1%] in the control group; P = .31). At 24 months, genetic testing uptake was 31 patients (30.7%) in intervention vs 18 patients (20.9%) in control (P = .14). Comparing decision-making measures between groups at baseline to 6 months, there were significant decreases in perceived breast cancer risk and in breast cancer worry (standard mean differences = -0.48 and -0.40, respectively)., Conclusions and Relevance: This randomized clinical trial did not find a significant increase in genetic counseling uptake among patients who received patient and clinician decision support vs those who received standard education, although more than one-third of the ethnically diverse women enrolled in the intervention underwent genetic counseling. These findings suggest that the main advantage for these high-risk women is the ability to opt for screening and preventive services to decrease their cancer risk., Trial Registration: ClinicalTrials.gov Identifier: NCT03470402.

We evaluated strategies to identify and recruit a racially/ethnically diverse cohort of women at high-risk for breast cancer to a randomized controlled trial (RCT). We enrolled 300 high-risk women and 50 healthcare providers to a RCT of standard educational materials alone or in combination with web-based decision support tools. We implemented five strategies to identify high-risk women: (i) recruitment among patients previously enrolled in a study evaluating breast cancer risk; (ii) automated breast cancer risk calculation using information extracted from the electronic health record (EHR); (iii) identification of women with atypical hyperplasia or lobular carcinoma in situ (LCIS) using International Classification of Diseases (ICD)-9/10 diagnostic codes; (iv) clinical encounters with enrolled healthcare providers; (v) recruitment flyers/online resources. Breast cancer risk was calculated using either the Gail or Breast Cancer Surveillance Consortium (BCSC) models. We identified 6,229 high-risk women and contacted 3,459 (56%), of whom 17.2% were identified from prior study cohort, 37.5% through EHR risk information, 14.8% with atypical hyperplasia/LCIS, 29.0% by clinical encounters, and 1.5% through recruitment flyers. Women from the different recruitment sources varied by age and 5-year invasive breast cancer risk. Of 300 enrolled high-risk women, 44.7% came from clinical encounters and 27.3% from prior study cohort. Comparing enrolled with not-enrolled participants, there were significant differences in mean age (57.2 vs. 59.1 years), proportion of non-Whites (41.5% vs. 54.8%), and mean 5-year breast cancer risk (3.0% vs. 2.3%). We identified and successfully recruited diverse high-risk women from multiple sources. These strategies may be implemented in future breast cancer chemoprevention trials., Prevention Relevance: We describe five strategies to identify and successfully recruit a large cohort of racially/ethnically diverse high-risk women from multiple sources to a randomized controlled trial evaluating interventions to increase chemoprevention uptake. Findings could inform recruitment efforts for future breast cancer prevention trials to increase recruitment yield of high-risk women., (©2022 American Association for Cancer Research.)

Purpose: Increasing usage of multigene panel testing has identified more patients with pathogenic or likely pathogenic (P or LP) variants in low-moderate penetrance genes or variants of uncertain significance (VUS). Our study evaluates the association between genetic test results and contralateral prophylactic mastectomy (CPM) among patients with breast cancer., Methods: We conducted a retrospective cohort study among women diagnosed with unilateral stage 0-III breast cancer between 2013 and 2020 who underwent genetic testing. We examined whether genetic test results were associated with CPM using multivariable logistic regression models., Results: Among 707 racially or ethnically diverse women, most had benign or likely benign (B or LB) variants, whereas 12.5% had P or LP and 17.9% had VUS. Racial or ethnic minorities were twice as likely to receive VUS. Patients with P or LP variants had higher CPM rates than VUS or B or LB (64.8% v 25.8% v 25.9%), and highest among women with P or LP variants in high-penetrance genes (74.6%). On multivariable analysis, P or LP compared with B or LB variants were significantly associated with CPM (odds ratio = 4.24; 95% CI, 2.48 to 7.26)., Conclusion: Women with P or LP variants on genetic testing were over four times more likely to undergo CPM than B or LB. Those with VUS had similar CPM rates as B or LB. Our findings suggest appropriate genetic counseling and communication of cancer risk to multiethnic breast cancer survivors., Competing Interests: Meghna S. TrivediHonoraria: OncliveNo other potential conflicts of interest were reported.

In March 2020, days after New York shut down to mitigate the spread of COVID-19, we developed a cross-sectional, participant-administered electronic survey to explore how New Yorkers were impacted by and were responding to the ongoing crisis. A critical component of the survey was to assess how credible and trustworthy respondents found various information sources. To advertise and distribute the survey, we embedded an invitation to participate using a popup on the GetHealthyHeights.org website. GetHealthyHeights was designed using community-based participatory research for the medically-underserved, urban, and largely Latinx community of Washington Heights-Inwood, New York City. We received 321 responses from April through July 2020. Participant ages ranged from 25 to 87, and 25% were Latinx. Results showed that the choice of and trust in different COVID-19 information sources were observed to be significantly different across demographic variables, including gender, age, race, and chronic health conditions. In the domains of trust and information source credibility, designers should account for perspectives of diverse subgroups., (©2018 AMIA - All rights reserved.)

Women at high risk for breast cancer may benefit from enhanced screening and risk-reduction strategies. However, limited time during clinical encounters is one barrier to routine breast cancer risk assessment. We evaluated if electronic health record (EHR) data downloaded using Fast Healthcare Interoperability Resources (FHIR) is sufficient for breast cancer risk calculation in our decision support tools, RealRisks and BNAV. We accessed EHR data using FHIR for six patient advocates, and downloaded and parsed XML documents. We searched for relevant clinical variables, and evaluated if data was sufficient to calculate risk using validated models (Gail, Breast Cancer Screening Consortium [BCSC], BRCAPRO). While only one advocate had sufficient EHR data to calculate risk using the BCSC model only, we identified variables including age, race/ethnicity, mammographic density, and prior breast biopsy in most advocates. EHR data from FHIR could be incorporated into automated breast cancer risk calculation in clinical decision support tools., (©2021 AMIA - All rights reserved.)

Background: New York State law mandates that women with dense breasts receive a written notification of their breast density (BD) and its implications, but data on the impact of dense breast notification (DBN) on BD awareness and knowledge in diverse populations remain limited., Methods: Between 2016 and 2018, we collected survey and mammographic data from 666 women undergoing screening mammography in New York City (ages 40-60, 80% Hispanic, 69% Spanish-speaking) to examine the impact of prior DBN on BD awareness by sociodemographic and breast cancer risk factors, and describe BD knowledge by sources of information., Results: Only 24.8% of the overall sample and 34.9% of women receiving DBN had BD awareness. In multivariable models adjusting for DBN, awareness was significantly lower in women who were Spanish-speaking [OR, 0.16; 95% confidence interval (CI), 0.09-0.30 vs. English speakers], were foreign-born (OR, 0.31; 95% CI, 0.16-0.58 vs. U.S.-born), and had lower educational attainment (e.g., high school degree or less; OR, 0.14; 95% CI, 0.08-0.26 vs. college or higher degree). Women receiving DBN were more likely to be aware of BD (OR, 2.61; 95% CI, 1.59-4.27) but not more knowledgeable about the impact of BD on breast cancer risk and detection. However, women reporting additional communication about their BD showed greater knowledge in these areas., Conclusions: DBN increases BD awareness disproportionately across sociodemographic groups., Impact: Efforts to improve communication of DBN must focus on addressing barriers in lower socioeconomic and racially and ethnically diverse women, including educational and language barriers., (©2021 The Authors; Published by the American Association for Cancer Research.)

Background: Chemopreventive agents such as selective estrogen receptor modulators and aromatase inhibitors have proven efficacy in reducing breast cancer risk by 41% to 79% in high-risk women. Women at high risk of developing breast cancer face the complex decision of whether to take selective estrogen receptor modulators or aromatase inhibitors for breast cancer chemoprevention. RealRisks is a patient-centered, web-based decision aid (DA) designed to promote the understanding of breast cancer risk and to engage diverse women in planning a preference-sensitive course of decision making about taking chemoprevention., Objective: This study aims to understand the perceptions of women at high risk of developing breast cancer regarding their experience with using RealRisks-a DA designed to promote the uptake of breast cancer chemoprevention-and to understand their information needs., Methods: We completed enrollment to a randomized controlled trial among 300 racially and ethnically diverse women at high risk of breast cancer who were assigned to standard educational materials alone or such materials in combination with RealRisks. We conducted semistructured interviews with a subset of 21 high-risk women enrolled in the intervention arm of the randomized controlled trial who initially accessed the tool (on average, 1 year earlier) to understand how they interacted with the tool. All interviews were audio recorded, transcribed verbatim, and compared with digital audio recordings to ensure the accuracy of the content. We used content analysis to generate themes., Results: The mean age of the 21 participants was 58.5 (SD 10.1) years. The participants were 5% (1/21) Asian, 24% (5/21) Black or African American, and 71% (15/21) White; 10% (2/21) of participants were Hispanic or Latina. All participants reported using RealRisks after being granted access to the DA. In total, 4 overarching themes emerged from the qualitative analyses: the acceptability of the intervention, specifically endorsed elements of the DA, recommendations for improvements, and information needs. All women found RealRisks to be acceptable and considered it to be helpful (21/21, 100%). Most women (13/21, 62%) reported that RealRisks was easy to navigate, user-friendly, and easily accessible on the web. The majority of women (18/21, 86%) felt that RealRisks improved their knowledge about breast cancer risk and chemoprevention options and that RealRisks informed their (17/21, 81%) decision about whether or not to take chemoprevention. Some women (9/21, 43%) shared recommendations for improvements, as they wanted more tailoring based on user characteristics, felt that the DA was targeting a narrow population of Hispanic or Latina by using graphic novel-style narratives, wanted more understandable terminology, and felt that the tool placed a strong emphasis on chemoprevention drugs., Conclusions: This qualitative study demonstrated the acceptability of the RealRisks web-based DA among a diverse group of high-risk women, who provided some recommendations for improvement., (©Tarsha Jones, Ashlee Guzman, Thomas Silverman, Katherine Freeman, Rita Kukafka, Katherine Crew. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 08.06.2021.)

Objectives: To examine associations between patient-reported mental illness diagnosis and symptoms and BRCA1/2 genetic testing intention among women undergoing screening mammography., Sample & Setting: 100 multiethnic women of lower socioeconomic status who were undergoing mammography screening and met family history criteria for BRCA1/2 genetic testing., Methods & Variables: Descriptive and bivariate nonparametric statistics and multivariate logistic regression were used to examine associations between mental illness and genetic testing intention. Variables were anxiety, depression, patient-reported mental illness diagnosis and symptoms, and testing intention., Results: Prevalence rates of mental illness symptoms were 36% for clinically significant depression and 36% for anxiety. Although 76% of participants intended to undergo genetic testing, only 5% had completed testing. History of mental illness and elevated levels of anxiety and depressive symptoms were positively correlated with testing intention in the bivariate analysis. In multivariate analysis, only younger age and less education were associated with testing intention., Implications for Nursing: Future studies should address psychosocial needs and other competing barriers at the patient, provider, and healthcare system levels to increase access to BRCA1/2 genetic testing among multiethnic women.

Digital health is uniquely positioned to transform health care. This viewpoint explores the enormous benefits for health consumers when digital-first health care is embraced. Also, it explores what risks exist if surveillance capitalism takes over health care. Further, some solutions to prepare digital health citizens for the road ahead are also discussed., (©Rita Kukafka. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 21.11.2019.)

Background: Chemoprevention using selective estrogen receptor modulators and aromatase inhibitors has been shown to reduce invasive breast cancer incidence in high-risk women. Despite this evidence, few high-risk women who are eligible for chemoprevention utilize it as a risk-reducing strategy. Reasons for low uptake include inadequate knowledge about chemoprevention among patients and healthcare providers, concerns about side effects, time constraints during the clinical encounter, and competing comorbidities., Methods/design: We describe the study design of a randomized controlled trial examining the effect of two web-based decision support tools on chemoprevention decision antecedents and quality, referral for specialized counseling, and chemoprevention uptake among women at an increased risk for breast cancer. The trial is being conducted at a large, urban medical center. A total of 300 patients and 50 healthcare providers will be recruited and randomized to standard educational materials alone or in combination with the decision support tools. Patient reported outcomes will be assessed at baseline, one and six months after randomization, and after their clinic visit with their healthcare provider., Discussion: We are conducting this trial to provide evidence on how best to support personalized breast cancer risk assessment and informed and shared decision-making for chemoprevention. We propose to integrate the decision support tools into clinical workflow, which can potentially expand quality decision-making and chemoprevention uptake., Trial Registration: NCT03069742.

Genetic counseling is under-utilized in women who meet family history criteria for BRCA1 and BRCA2 (BRCA1/2) testing, particularly among racial/ethnic minorities. We evaluated the uptake of BRCA1/2 genetic testing among women presenting for screening mammography in a predominantly Hispanic, low-income population of Washington Heights in New York City. We administered the Six-Point Scale (SPS) to women presenting for screening mammography at Columbia University Irving Medical Center (CUIMC) in the Washington Heights neighborhood of New York, NY. The SPS is a family history screener to determine eligibility for BRCA1/2 genetic testing based upon U.S. Preventive Services Task Force (USPSTF) guidelines that has been validated in low-income, multiethnic populations. Among women who underwent screening mammography at CUIMC between November 2014 and June 2016, 3,055 completed the SPS family history screener. Participants were predominantly Hispanic (76.7%), and 12% met family history criteria for BRCA1/2 testing, of whom <5% had previously undergone testing. In a multiethnic population, a significant proportion met family history criteria for BRCA1/2 testing, but uptake of genetic testing was low. Such underutilization of BRCA1/2 genetic testing among minorities further underscores the need to develop programs to engage high-risk women from underrepresented populations in genetic testing services., (Copyright © 2019. Published by Elsevier Inc.)