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BACKGROUND: Most U.S. states require written notification of breast density after mammograms, yet effects of notifications on knowledge are mixed. Little is known about potential misunderstandings. METHODS: We used a sequential mixed-methods study design to assess women's knowledge about breast density, after receiving a notification. We conducted a telephone survey among a racially/ethnically and health-literacy level diverse sample (N = 754) and qualitative interviews with 61 survey respondents. RESULTS: In survey results, 58% of women correctly indicated that breast density is not related to touch, with higher accuracy among non-Hispanic White women and those with greater health literacy. Next, 87% of women recognized that breast density is identified visually via mammogram, with no significant differences in responses by race/ethnicity or health literacy. Most (81%) women recognized that a relationship exists between breast tissue types and density; Non-Hispanic White women were less likely to respond correctly. Only 47% of women correctly indicated that having dense breasts increases one's risk of breast cancer; women with low health literacy were more often correct. Qualitative results revealed additional dimensions of understanding: Some women incorrectly reported that density could be felt, or dense breasts were lumpier, thicker, or more compacted; others identified “dense” tissue as fatty. Interpretations of risk included that breast density was an early form of breast cancer. CONCLUSION: We found areas of consistent knowledge and identified misperceptions surrounding breast density across race/ethnicity and health literacy levels. Further education to address disparities and correct misunderstandings is essential to promote better knowledge, to foster informed decisions.

Despite efforts of professional organizations and government agencies to solidify professional identities of Community Health Workers and Patient Navigators in the oncology workforce, the scientific literature perpetuates wide variability in the nomenclature used to define these natural change agents with proven efficacy in improving access to quality cancer care for populations historically marginalized. In order to disseminate, sustain and scale up these life-saving roles in cancer care, the oncology field must come together now to adopt clear and consistent job titles and occupational identities.

Sociolegal barriers to cancer care are defined as health-related social needs like affordable healthy housing, stable utility service, and food security that may be remedied by public policy, law, regulation, or programming. Legal support has not been studied in cancer care.The authors conducted a randomized controlled trial of patients who had newly diagnosed cancer at a safety-net medical center in Boston from 2014 through 2017, comparing standard patient navigation versus enhanced navigation partnered with legal advocates to identify and address sociolegal barriers. English-speaking, Spanish-speaking, or Haitian Creole-speaking patients with breast and lung cancer were eligible within 30 days of diagnosis. The primary outcome was timely treatment within 90 days of diagnosis. Secondary outcomes included patient-reported outcomes (distress, cancer-related needs, and satisfaction with navigation) at baseline and at 6 months.In total, 201 patients with breast cancer and 19 with lung cancer enrolled (response rate, 78%). The mean patient age was 55 years, 51% of patients were Black and 22% were Hispanic, 20% spoke Spanish and 8% spoke Haitian Creole, 73% had public health insurance, 77% reported 1 or more perceived sociolegal barrier, and the most common were barriers to housing and employment. Ninety-six percent of participants with breast cancer and 73% of those with lung cancer initiated treatment within 90 days. No significant effect of enhanced navigation was observed on the receipt of timely treatment among participants with breast cancer (odds ratio, 0.88; 95% CI, 0.17-4.52) or among those with lung cancer (odds ratio, 4.00; 95% CI, 0.35-45.4). No differences in patient-reported outcomes were observed between treatment groups.Navigation enhanced by access to legal consultation and support had no impact on timely treatment, patient distress, or patient needs. Although most patients reported sociolegal barriers, few required intensive legal services that could not be addressed by navigators.In patients with cancer, the experience of sociolegal barriers to care, such as unstable housing, utility services, or food insecurity, is discussed. Addressing these barriers through legal information and assistance may improve care. This study compares standard patient navigation versus enhanced navigation partnered with legal advocates for patients with breast and lung cancers. Almost all patients in both navigation groups received timely care and also reported the same levels of distress, needs, and satisfaction with navigation. Although 75% of patients in the study had at least 1 sociolegal barrier identified, few required legal advocacy beyond what a navigator who received legal information and coaching could provide.

Women have historically been under-represented in clinical research, but the extent to which this is true for substance use disorder (SUD) trials is unknown. We aimed to determine the ratio of female:male participation in clinical trials for SUDs and describe the reporting of sex-specific outcomes from 2010 to 2019.A retrospective cohort review of clinical trials involving people with SUD.United States.Clinical trials including people with SUD registered in clinicaltrials.gov and completed between 1 January 2010 and 31 December 2019 were reviewed. Trials were excluded if they had 30 participants, focused on SUD prevention, were conducted outside the United States and/or did not report data on participant sex or gender.The following were extracted for each trial: primary outcome, number of participants enrolled, analytical sample size, percentage of participants who were female, inclusion of transgender participants, whether sex-based analyses were performed, funding source, type of SUD and type of intervention. Relative representation in trials was examined using the female:male ratio, reported using median ratios and by year of trial completion. The proportion of females participating was adjusted using the underlying disease prevalence among females using National Survey on Drug Use and Health data.A total of 316 trials met inclusion criteria: 274 were mixed-sex, 12 enrolled only males and 30 only females. In 274 mixed-sex trials, 40% of 57 544 participants were female. Only 22 trials (8%) reported any sex-specific analyses; four studies (1.5%) reported inclusion of transgender participants. Females represented 35% of participants in trials targeting illicit drug use disorder, 52% in nicotine use disorder and 29% in alcohol use disorder. Accounting for underlying disease prevalence revealed that women had the lowest relative enrollment in alcohol use disorder trials (median participation to prevalence ratio in 2017: 0.58; 95% confidence interval: 0.13, 0.91).A review of 316 US clinical trials for alcohol, nicotine and illicit substance use disorders completed between 2010 and 2019 showed that females were enrolled at lower rates than males overall. Only 8% of the trials reviewed reported sex-specific analyses and 1.5% reported transgender participants.

PURPOSE Breast cancer risk prediction models are used to identify high-risk women for early detection, targeted interventions, and enrollment into prevention trials. We sought to develop and evaluate a risk prediction model for breast cancer in US Black women, suitable for use in primary care settings. METHODS Breast cancer relative risks and attributable risks were estimated using data from Black women in three US population-based case-control studies (3,468 breast cancer cases; 3,578 controls age 30-69 years) and combined with SEER age- and race-specific incidence rates, with incorporation of competing mortality, to develop an absolute risk model. The model was validated in prospective data among 51,798 participants of the Black Women's Health Study, including 1,515 who developed invasive breast cancer. A second risk prediction model was developed on the basis of estrogen receptor (ER)–specific relative risks and attributable risks. Model performance was assessed by calibration (expected/observed cases) and discriminatory accuracy (C-statistic). RESULTS The expected/observed ratio was 1.01 (95% CI, 0.95 to 1.07). Age-adjusted C-statistics were 0.58 (95% CI, 0.56 to 0.59) overall and 0.63 (95% CI, 0.58 to 0.68) among women younger than 40 years. These measures were almost identical in the model based on estrogen receptor–specific relative risks and attributable risks. CONCLUSION Discriminatory accuracy of the new model was similar to that of the most frequently used questionnaire-based breast cancer risk prediction models in White women, suggesting that effective risk stratification for Black women is now possible. This model may be especially valuable for risk stratification of young Black women, who are below the ages at which breast cancer screening is typically begun.

PURPOSE: Healthcare systems contribute to disparities in breast cancer outcomes. Patient navigation is a widely cited systembased approach to improve outcomes among populations at risk for delays in care. Patient navigation programs exist in all major Boston hospitals, yet disparities in outcomes persist. The objective of this study was to conduct a baseline assessment of navigation processes at six Boston hospitals that provide breast cancer care in preparation for an implementation trial of standardized navigation across the city. METHODS: We conducted a mixed methods study in six hospitals that provide treatment to breast cancer patients in Boston. We administered a web-based survey to clinical champions (n = 7) across six sites to collect information about the structure of navigation programs. We then conducted in-person workflow assessments at each site using a semi-structured interview guide to understand site-specific implementation processes for patient navigation programs. The target population included administrators, supervisors, and patient navigators who provided breast cancer treatment-focused care. RESULTS: All sites offered patient navigation services to their patients undergoing treatment for breast cancer. We identified wide heterogeneity in terms of how programs were funded/resourced, which patients were targeted for navigation, the type of services provided, and the continuity of those services relative to the patient’s cancer treatment. CONCLUSIONS: The operationalization of patient navigation varies widely across hospitals especially in relation to three core principles in patient navigation: providing patient support across the care continuum, targeting services to those patients most likely to experience delays in care, and systematically screening for and addressing patients’ health-related social needs. Gaps in navigation across the care continuum present opportunities for intervention. TRIAL REGISTRATION: Clinical Trial Registration Number NCT03514433, 5/2/2018

Mammography remains the only validated screening tool for breast cancer, however, there are limitations to mammography. One of the limitations of mammography is the variable sensitivity based on breast density. Supplemental screening may be considered based on the patient’s risk level and breast density. For average-risk women with nondense breasts, the sensitivity of digital breast tomosynthesis (DBT) screening is high; additional supplemental screening is not warranted in this population. For average-risk women with dense breasts, given the decreased sensitivity of mammography/DBT, this population may benefit from additional supplemental screening with contrast-enhanced mammography, screening ultrasound (US), breast MRI, or abbreviated breast MRI. In intermediate-risk women, there is emerging evidence suggesting that women in this population may benefit from breast MRI or abbreviated breast MRI. In intermediate-risk women with dense breasts, given the decreased sensitivity of mammography/DBT, this population may benefit from additional supplemental screening with contrast-enhancedmammography or screening US. There is strong evidence supporting screening high-risk women with breast MRI regardless of breast density. Contrast-enhanced mammography, whole breast screening US, or abbreviated breast MRI may be also considered. The American College of Radiology Appropriateness Criteria are evidence-based guidelines for specific clinical conditions that are reviewed annually by a multidisciplinary expert panel. The guideline development and revision include an extensive analysis of current medical literature from peer reviewed journals and the application of well-established methodologies (RAND/UCLA Appropriateness Method and Grading of Recommendations Assessment, Development, and Evaluation or GRADE) to rate the appropriateness of imaging and treatment procedures for specific clinical scenarios. In those instances where evidence is lacking or equivocal, expert opinion may supplement the available evidence to recommend imaging or treatment.

Objective Understanding whether states’ breast density notifications are associated with desired effects, or disparities, can inform federal policy. We examined self-reported receipt of personal breast density information, breast density discussions with providers, knowledge about density’s masking effect, and association with increased breast cancer risk by state legislation status and women’s sociodemographic characteristics. Methods Cross-sectional observational population-based telephone survey of women aged >40 years who underwent mammography within prior 2 years, had no history of breast cancer, and had heard the term “breast density.” Results Among 2,306 women, 57% received personal breast density information. Multivariate regression models adjusted for covariates indicated that women in notification states were 1.5 times more likely to receive density information, and older Black and Asian women of lower income and lower health literacy were less likely. Overall, only 39% of women discussed density with providers; women in notification states were 1.75 times as likely. Older and Asian women were less likely to have spoken with providers; women with high literacy or prior biopsy were more likely. State legislation status was not associated with differences in density knowledge, but Hispanic women and women of lower income or low health literacy had less knowledge regarding density’s masking effects; older women were more knowledgeable. Hispanic women and women of lower income or low health literacy were more likely, and middle-aged women less likely, to recognize increased breast cancer risk. Discussion Some positive effects were observed, but sociodemographic disparities suggest tailoring of future breast density communications for specific populations of women to ensure equitable understanding.

Starting breast cancer screening at age 40 versus 50 may increase potential harms frequency with a small mortality benefit. Younger women’s screening decisions, therefore, may be complex. Shared decision-making (SDM) is recommended for women under 50 and may support women under 55 for whom guidelines vary. How women with limited health literacy (LHL) approach breast cancer screening decision-making is less understood, and most SDM tools are not designed with their input. This phenomenological study sought to characterize mammography counseling experiences among women with LHL and primary care providers (PCPs). Women ages 40–54 with LHL who had no history of breast cancer or mammogram within 9 months were approached before a primary care visit at a safety-net hospital. PCPs at this site were invited to participate. Qualitative interviews explored mammography counseling experiences. Patients also reviewed sample information materials. A constant comparison technique generated four themes salient to 25 patients and 20 PCPs: addressing family history versus comprehensive risk assessment; potential mammography harms discussions; information delivery preferences; and integrating pre-visit information tools. Findings suggest that current counseling techniques may not be responsive to patient-identified needs. Opportunities exist to improve how mammography information is shared and increase accessibility across the health literacy spectrum.

BACKGROUND: Limited health literacy is a driver of cancer disparities and associated with less participation in medical decisions. Mammography screening decisions are an exemplar of where health literacy may impact decision-making and outcomes. OBJECTIVE: To describe informational needs and shared decision-making (SDM) experiences among women ages 40–54 who have limited health literacy and primary care providers (PCPs). DESIGN: Qualitative, in-depth interviews explored experiences with mammography counseling and SDM. PARTICIPANTS: Women ages 40–54 with limited health literacy and no history of breast cancer or mammogram in the prior 9 months were approached before a primary care visit at a Boston academic, safety-net hospital. PCPs practicing at this site were eligible for PCP interviews. APPROACH: Interviews were audio-recorded and transcribed verbatim. A set of deductive codes for each stakeholder group was developed based on literature and the interview guide. Inductive codes were generated during codebook development. Codes were compared within and across patient and PCP interviews to create themes relevant to mammography decision-making. KEY RESULTS: The average age of 25 interviewed patients was 46.5; 18 identified as black, 3 as Hispanic, 2 as non-Hispanic white, and 2 had no recorded race or ethnicity. Of 20 PCPs, 15 were female; 12 had practiced for >5 years. Patients described a lack of technical (appropriate tests and what they do) and process (what happens during a mammogram visit) knowledge, viewing these as necessary for decision-making. PCPs were reluctant to engage patients with limited health literacy in SDM due to time constraints and feared that increased information might confuse patients or deter them from having mammograms. Both groups felt pre-visit education would facilitate mammography-related SDM during clinical visits. CONCLUSION: Both patients and PCPs perceived a need for tools to relay technical and process knowledge about mammography prior to clinical encounters to address the scope of information that patients with limited health literacy desired. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1007/s11606-020-06213-2) contains supplementary material, which is available to authorized users.

PURPOSE: Low health literacy (HL) and language negatively affect cancer screening and prevention behaviors; less is known about how they affect the patient’s experience during cancer treatment. This study explores associations among HL, spoken language, and dimensions of cancer-related needs within 6 months of receiving a breast cancer diagnosis. METHODS: Women speaking English, Spanish, or Haitian Creole, enrolled in a patient navigation study at diagnosis, completed a survey in their primary spoken language at baseline and 6 months to characterize their cancer-related needs. HL was measured using the Brief Health Literacy Screening Tool. Outcomes included the Cancer Needs Distress Inventory (CaNDI; n = 38 items) and the Communication and Attitudinal Self-Efficacy scale (CASE-Cancer) for cancer (n = 12 items). Linear regressions measured the impact of HL and language on total CaNDI and CASE-Cancer scale for cancer scores and subscales, adjusted for demographics. RESULTS: At baseline, 262 women participated and 228 (87%) followed up at 6 months. Of these, 38% had adequate HL, 33% had marginal HL, and 29% had inadequate HL. Women with inadequate or marginal HL had higher median baseline CaNDI scores ( P = .02) and lower self-efficacy scores ( P = .008), relative to those with adequate HL. Haitian-Creole speakers had significantly lower CANDI scores at baseline ( P = .03). Adjusting for demographics, differences in CaNDI scores at baseline remained significant for those with lower HL and Haitian-Creole speakers. At 6 months, differences in self-efficacy persisted for Haitian-Creole speakers. CONCLUSION: Findings suggest that interventions oriented to mitigating HL and language barriers might reduce distress at the time of diagnosis and improve self-efficacy over the course of treatment.

Background The HEALing Communities Study (HCS) is a large-scale multisite study testing Community Engagement using coalition facilitation as an approach to addressing the worsening overdose crisis. Within Community Engagement, Community-Based Participatory Research (CBPR) principles guide researchers on best practices for working in partnership with communities, yet these principles have not been well researched in large complex multi-site studies. Methods This paper used ethnographic methods to explore how coalitions operationalized the CBPR principles during early coalition formation. Two coders independently analyzed 101 ethnographies from HCS coalition meetings in eight Massachusetts communities held between November 2019 and December 2020. Themes were developed through consensus between the coders followed by group discussions among the authorship team. Results We found mutual trust, shared goals, addressing power dynamics, meeting structure and attending to the sociopolitical community context could all serve as barriers or facilitators to operationalizing the CBPR principles. Conclusions These findings provide unique suggestions for future community-engaged multisite studies, and demonstrate the importance of research teams to mitigate inherent power imbalances by acknowledging and creating space for community ownership. The findings also highlight the value of a community engaged facilitator role to promote the CBPR principles. Strategies such as transparency, uniting over shared interests and bringing in a wide range of stakeholders were notable facilitators for operationalizing the principles.

OBJECTIVE: Despite evidence of disparate uptake of breast density (BD) information, little is known about diverse women’s preferences for and experiences learning about BD. METHODS: Telephone survey among 2,306 racially/ethnically and literacy diverse women; qualitative interviews with 61 survey respondents. Responses by participant race/ethnicity and literacy were examined using bivariate, then multivariable analyses. Interviews were content-analyzed for themes. RESULTS: Most women (80%) preferred learning of personal BD from providers, with higher rates among Non-Hispanic Black (85%) than Non-Hispanic White women (80%); and among Non-Hispanic White than Asian women (72%, all ps

ImportanceBreast density is an independent risk factor for breast cancer. Despite the proliferation of mandated written notifications about breast density following mammography, there is little understanding of how women perceive the relative breast cancer risk associated with breast density.ObjectiveTo assess women’s perception of breast density compared with other breast cancer risks and explore their understanding of risk reduction.Design, Setting, and ParticipantsThis mixed-methods qualitative study used telephone surveys and semistructured interviews to investigate perceptions about breast cancer risk among a nationally representative, population-based sample of women. Eligible study participants were aged 40 to 76 years, reported having recently undergone mammography, had no history of prior breast cancer, and had heard of breast density. Survey participants who had been informed of their personal breast density were invited for a qualitative interview. Survey administration spanned July 1, 2019, to April 30, 2020, with 2306 women completing the survey. Qualitative interviews were conducted from February 1 to May 30, 2020.Main Outcomes and MeasuresRespondents compared the breast cancer risk associated with breast density with 5 other risk factors. Participants qualitatively described what they thought contributed to breast cancer risk and ways to reduce risk.ResultsOf the 2306 women who completed the survey, 1858 (166 [9%] Asian, 503 [27%] Black, 268 [14%] Hispanic, 792 [43%] White, and 128 [7%] other race or ethnicity; 358 [19%] aged 40-49 years, 906 [49%] aged 50-64 years, and 594 [32%] aged ≥65 years) completed the revised risk perception questions and were included in the analysis. Half of respondents thought breast density to be a greater risk than not having children (957 [52%]), having more than 1 alcoholic drink per day (975 [53%]), or having a prior breast biopsy (867 [48%]). Most respondents felt breast density was a lesser risk than having a first-degree relative with breast cancer (1706 [93%]) or being overweight or obese (1188 [65%]). Of the 61 women who were interviewed, 6 (10%) described breast density as contributing to breast cancer risk, and 43 (70%) emphasized family history as a breast cancer risk factor. Of the interviewed women, 17 (28%) stated they did not know whether it was possible to reduce their breast cancer risk.Conclusions and RelevanceIn this qualitative study of women of breast cancer screening age, family history was perceived as the primary breast cancer risk factor. Most interviewees did not identify breast density as a risk factor and did not feel confident about actions to mitigate breast cancer risk. Comprehensive education about breast cancer risks and prevention strategies is needed.

The evidence continues to build in support of implementing patient navigation to reduce barriers and increase access to care. However, health disparities remain in cancer outcomes. The goal of the National Navigation Roundtable (NNRT) is to serve as a convener to help support the field of navigation to address equity.To examine the progress and opportunities for navigation, the NNRT submitted a collection of articles based on the results from 2 dedicated surveys and contributions from member organizations. The intent was to help inform what we know about patient navigation since the last dedicated examination in this journal 10 years ago.The online survey of700 people described navigators and examined sustainability and policy issues and the longevity, specific role and function, and impact of clinical and nonclinical navigators in addition to the role of training and supervision. In addition, a full examination of coronavirus disease 2019 and contributions from member organizations helped further define progress and future opportunities to meet the needs of patients through patient navigation.To achieve equity in cancer care will demand the sustained action of virtually every component of the cancer care system. It is the hope and intent of the NNRT that the information presented in this supplement will be a catalyst for action in this collective action approach.

Problem The potential for community-engaged research to address health inequity requires deliberate effort to create trusting and equitable community-academic partnerships. A lack of evidence-based opportunities for cultivating such partnerships remains a barrier. Approach In 2017 and 2018, the authors designed, facilitated, and evaluated a mixed stakeholder training, Communicating to Engage, at 2 urban academic medical centers involved in the All of Us research program, Boston Medical Center and Mass General Brigham. The goal was to bring together researchers and community members to develop communication skills through improvisational theater-based co-learning. The curriculum was inspired by several evidence-based learning frameworks including community-based participatory research principles and improvisational theater techniques. A self-administered survey completed before and after the training session measured participants' communication skills using the Self-Perceived Communication Competence Scale (SPCCS) and comfort with specific communication styles as outlined in the program's training objectives. Paired t tests were used to measure changes in scaled responses among combined participants and separately among self-identified community members and researchers. Outcomes Sixty-nine total participants across 6 workshops completed training evaluations. Overall, pre-post survey analysis demonstrated significant mean score improvement for both the SPCCS and comfort with specific communication styles. In stratified analysis, both community members (n = 26) and researchers (n = 38) reported significant improvement in scores related to comfort with specific communication styles. Only researchers, but not community members, had significant improvement in SPCCS scores. Next steps The Communicating to Engage program brought community and researcher stakeholders together and demonstrated improvement in self-perceived communication styles, yet researcher participants benefited more than community participants. Future innovation is necessary to further target community stakeholder communication training needs. Mixed stakeholder improvisational theater-based learning provides deliberate opportunities to build new community-academic partnerships that may enhance health equity initiatives.

For this study, the authors examined whether specific programmatic factors were associated with the sustainability of patient navigation programs.This cross-sectional survey explored navigation programmatic factors associated with 3 measures of sustainability: 1) length of program existence, 2) reliance on sustainable funding, and 3) participation in alternative payment models. In total, 750 patient navigators or program administrators affiliated with oncology navigation programs in clinical-based and community-based settings completed the survey between April and July 2019.Associations were observed between both accreditation and work setting and measures of program sustainability. Accredited programs and larger, more resourced clinical institutions were particularly likely to exhibit multiple measures of sustainability. The results also identified significant gaps at the programmatic level in data collection and reporting among navigation programs, but no association was observed between programmatic data collection/reporting and sustainability.Navigation is not currently a reimbursable service and has historically been viewed as value-added in oncology settings. Therefore, factors associated with sustainability are critical to understand how to build a framework for successful navigation programs within the current system and also to develop the case for potential reimbursement in the future.

BACKGROUND: The present nationwide study used latent class analysis (LCA) to identify classes of cancer patient navigators (CPNs) and examined whether class membership and 12 indicators were related to navigator role retention. METHOD: Using data of 460 CPNs from the United States, LCA identified classes (or, in other words, homogenous subgroups) of CPNs with the following indicators: type of CPN (clinical vs. non-clinical), education level, area(s) of the cancer care continuum in which the CPN provided patient navigation, region and urbanity where the CPN provided services, organizational work setting, and patient navigation program funding source. The relationships of navigator retention with class membership and each indicator were examined with chi-square tests. RESULTS: The LCA found three classes of CPNs. Class 1 and class 3 were conceptualized as distinct homogeneous subgroups of clinical CPNs, which appeared to mainly differ on their likelihood of engagement in outreach, survivorship, palliative care, and end of life patient navigation. Class 2 was conceptualized as a non-clinical CPN subgroup, which primarily was distinct based on their high endorsement of employment in programs which are at least partially funded by grants and engagement in earlier stages of patient navigation (e.g., early detection). Provision of survivorship and treatment patient navigation were related to navigator role retention, with senior CPNs providing these patient navigation services more than novice CPNs. CONCLUSION: The present study highlights three distinct classes of CPNs, provides initial information regarding determinants of navigator retention, and makes a number of recommendations for future patient navigation research.

Patient navigation improves cancer care delivery for those most at risk for poor outcomes. Lack of sustainable funding threatens the full integration of navigation services into health care delivery systems. Standardized navigation metrics that document impact and identify best practices are necessary to support sustainability.The National Navigation Roundtable administered a web-based, cross-sectional survey to oncology patient navigation programs to identify barriers and facilitators to the use of navigation metrics. The 38-item survey asked about data-collection practices and specific navigation metrics used by the program. Exploratory and descriptive statistics were used to identify factors associated with data collection and reporting.Seven hundred fifty respondents from across the country represented navigation programs across the continuum of care. Although 538 respondents (72%) reported participating in routine data collection, only one-half of them used data for reporting purposes. For the 374 programs that used electronic health records, only 40% had discrete, reportable navigation fields, and 25% had an identifier for navigated patients. Program funding was identified as the only characteristic associated with data collection, whereas the type of data collected was associated with work setting, participation in alternative payment models, and where on the continuum navigation services are provided. Respondents participating in an oncology accreditation program were more likely to collect specific outcome metrics across the continuum and to use those data for reporting purposes. The most common barriers to data collection were time (55%) and lack of support for complex data systems and/or platforms (50%).Inconsistent data collection and reporting of oncology navigation programs remain a threat to sustainability. Aligning data collection with oncology accreditation, funding, and reimbursement is a viable path forward.

Introduction: Clinical and Translational Award (CTSA) programs are developing relevant training for researchers and community stakeholders participating in community-engaged research (CEnR). However, there is limited research exploring the ways community stakeholders and partners with key CEnR experiences can inform and shape training priorities for prospective CEnR scholars to build meaningful and equitable partnerships. Methods: This study conducted and analyzed online individual semi-structured in-depth interviews with community stakeholders (n = 13) engaged in CEnR to identify training priorities for graduate students and emerging scholars. Findings: Thematic analysis of 13 interview transcripts revealed four major training priorities for prospective scholars interested in engaging in CEnR: 1) researcher’s positionality, 2) equitable power sharing, 3) funding, and 4) ethics. Conclusion: Building equitable research partnerships was a central theme woven across all four training priorities. Further research should focus on examining the development, implementation, and evaluation of CEnR training in partnership with community stakeholders and partners with relevant CEnR experience. Adopting a collaborative approach to incorporate both community stakeholders and researchers’ priorities can align training competencies to better prepare scholars to engage in building research partnerships.

Highlights • HEALing Communities Study is a parallel-group cluster randomized controlled trial. • Communities That HEAL intervention’s goal is to reduce opioid overdose deaths. • Structured consensus decision-making strategy guided study measure development. • More than 80 study measure specifications and a common data model were developed. • The study will provide methodology and longitudinal community data for research., Background Opioid overdose deaths remain high in the U.S. Despite having effective interventions to prevent overdose deaths, there are numerous barriers that impede their adoption. The primary aim of the HEALing Communities Study (HCS) is to determine the impact of an intervention consisting of community-engaged, data-driven selection, and implementation of an integrated set of evidence-based practices (EBPs) on reducing opioid overdose deaths. Methods The HCS is a four year multi-site, parallel-group, cluster randomized wait-list controlled trial. Communities (n = 67) in Kentucky, Massachusetts, New York and Ohio are randomized to active intervention (Wave 1), which starts the intervention in Year 1 or the wait-list control (Wave 2), which starts the intervention in Year 3. The HCS will test a conceptually driven framework to assist communities in selecting and adopting EBPs with three components: 1) A community engagement strategy with local coalitions to guide and implement the intervention; 2) A compendium of EBPs coupled with technical assistance; and 3) A series of communication campaigns to increase awareness and demand for EBPs and reduce stigma. An implementation science framework guides the intervention and allows for examination of the multilevel contexts that promote or impede adoption and expansion of EBPs. The primary outcome, number of opioid overdose deaths, will be compared between Wave 1 and Wave 2 communities during Year 2 of the intervention for Wave 1. Numerous secondary outcomes will be examined. Discussion The HCS is the largest community-based implementation study in the field of addiction with an ambitious goal of significantly reducing fatal opioid overdoses.

These past months of the coronavirus disease-2019 (COVID-2019) pandemic have given us ample opportunity to reflect on the US health-care system. Despite overwhelming tragedy, it is an opportunity for us to learn and to change. As we postpone routine visits because of the pandemic, we worry about risks for patients who delay cancer screening. We use cervical cancer screening and prevention as an example of how we can use some “lessons learned” from the pandemic to prevent “collateral losses,” such as an increase in cancers. COVID-2019–related health-system changes, like the more rapid evaluation of diagnostic tests and vaccines, the transition to compensated virtual care for most counseling and education visits, and broadened access to home services, offer potential benefits to the delivery of cervical cancer screening and prevention. While we detail the case for cervical cancer prevention, many of the issues discussed are generalizable to other preventative measures. It would be a tragedy if the morbidity and mortality of COVID-2019 are multiplied because of additional suffering caused by delayed or deferred cancer screening and diagnostic evaluation—but maybe with creativity and reflection, we can use this pandemic to improve care.

Background The Boston University Clinical a Translational Science Institute (BU CTSI) identified a local need to increase the capacity of members of a diverse inner-city community with no prior knowledge of research to partner with researchers along the research continuum. Objectives To design, implement, and evaluate an introductory- level capacity-building training using community pedagogy and providing information about current research and opportunities to partner with local researchers. Methods Guided by two advisory boards of community-engaged professionals and patients, the community engagement team of the BU CTSI designed, implemented, and evaluated the Connecting Community to Research (CCR) training program. We targeted existing community groups in Boston interested in partnering with an academic institution to advance the health of their community. Interactive trainings focused on principles of community-engaged research (CEnR), and how individual experiences might influence research. Each session offered real-time opportunities for participants to engage with local researchers on existing research such as joining a local research advisory group or institutional review board. Self-administered surveys captured participant experiences. Conclusions Over 1 year, we trained 100 community members and almost all participants felt that the objectives of the training program were met and the information was relevant. More than 50% of the participants took advantage of partnership opportunities with local researchers. A toolkit was designed and disseminated to support others to replicate the program. We demonstrated that an interactive training curriculum designed with a community-engaged pedagogy and supported by opportunities for engagement has the ability to successfully partner community members with academic researchers.

PURPOSE: To investigate the association between pre- or perinatal factors and breast cancer risk among African American women. METHODS: Participants in the Black Women’s Health Study, a prospective cohort of 59,000 African American women, reported birth weight, preterm birth, twin or triplet status, maternal age at birth, birth order, and having been breastfed during infancy at various times during follow-up from 1997 to 2015. Numbers of incident cases ranged from 312 for breastfed analyses to 1,583 for twin or triplet analyses. Using multivariable Cox proportional hazards regression, we estimated hazard ratios (HRs) and 95% confidence intervals (CIs) for associations between each factor and breast cancer risk overall and by estrogen receptor (ER) status. RESULTS: Compared to birth weights of 5 lbs. 8 oz.−8 lbs. 13 oz., low (8 lbs. 13 oz.) birth weights were associated with increased breast cancer risk; HRs (95% CI) were 1.19 (0.98–1.44) and 1.26 (0.97–1.63), respectively. Associations were similar by ER status. Having been born to a mother aged ≥35 years vs.

Objective Currently, 30 US states mandate that radiologists notify women when dense breast tissue is found on mammography. Little is understood about how notifications are perceived by recipients. This qualitative study sought to understand how dense breast notifications (DBNs) impact women’s perceptions and their participation in follow-up care. Methods We assessed rates of DBN recall and conducted semi-structured telephone interviews with 30 English-speaking women ages 40 to 74 after receiving a DBN from a Massachusetts hospital. Content coding characterized women’s recall of the notification content, perceptions of breast density, and planned or actual participation in follow-up care. Results Most women (81%) recalled receiving a DBN, but few could recall specific content. Women described struggling to understand the meaning of breast density and created their own explanatory models of dense breasts that differed from medical explanations. Many women planned to or did talk with their doctors about breast density as a result of receiving the notification. Conclusions Women receiving DBNs have limited knowledge and many misperceptions about the implications of having dense breasts. Practice implications Educational support is needed to promote informed decision- making about breast cancer screening that incorporates personal risk in the setting of dense breast legislation.

RESEARCH OBJECTIVE: Little is known about the best process for selecting content for decision aids (DAs) on mammography screening. This analysis triangulates perspectives (experts, primary care providers, and patients) to understand areas of divergent and convergent input across stakeholder groups in developing a breast cancer screening DA for women ages 40–54 with limited health literacy. STUDY DESIGN: A 3‐round modified Delphi panel was conducted among national breast cancer screening and decision science experts. They rated the importance of 57 statements for possible inclusion in a breast cancer screening DA. Qualitative comments about each statement were collected via open‐ended text fields. Analysis was conducted following the RAND Appropriateness methodology. Separately, 25 women with limited health literacy (patients) and 20 primary care providers (PCPs) from outpatient clinics at a Boston‐based safety net hospital completed interviews exploring mammography‐related informational needs. To identify areas where stakeholder perspectives converged or diverged from each other, we conducted a qualitative synthesis using a constant comparison technique. Codes were developed and compared: (1) at the level of the individual interview; (2) within stakeholder groups; and, (3) across stakeholder groups. POPULATION STUDIED: Eight experts participated in the Delphi panel. Participants had an advanced degree (MD, PhD), > 3 years of either professional, clinical or research experience, and content expertise in breast cancer screening, health literacy, or DA design. Patients included mammography‐eligible, primary care patients ages 40–54 with upcoming visits, and limited health literacy as defined by a score of

Selective estrogen receptor modulators (SERMs) reduce breast cancer risk. Adoption of SERMs as prevention medication remains low. This is the first study to quantify social, cultural, and psychologic factors driving decision making regarding SERM use in women counseled on breast cancer prevention options. A survey study was conducted with women counseled by a health care provider (HCP) about SERMs. A statistical comparison of responses was performed between those who decided to use and those who decided not to use SERMs. Independent factors associated with the decision were determined using logistic regression. Of 1,023 participants, 726 made a decision: 324 (44.6%) decided to take a SERM and 402 (55.4%) decided not to. The most important factor for deciding on SERM use was the HCP recommendation. Other characteristics associated with the decision included attitudes and perceptions regarding medication intake, breast cancer worry, trust in HCP, family members with blood clots, and others' experiences with SERMs. The odds of SERM intake when HCP recommended were higher for participants with a positive attitude toward taking medications than for those with a negative attitude (Pinteraction = 0.01). This study highlights the importance of social and cultural aspects for SERM decision making, most importantly personal beliefs and experiences. HCPs' recommendations play a statistically significant role in decision making and are more likely to be followed if in line with patients' attitudes. Results indicate the need for developing interventions for HCPs that not only focus on the presentation of medical information but, equally as important, on addressing patients' beliefs and experiences. Cancer Prev Res; 10(11); 625–34. ©2017 AACR. See related editorial by Crew, p. 609

Background Racial and socioeconomic disparities in breast cancer mortality persist. In Boston, MA, Black, Non-Hispanic women and Medicaid-insured individuals are 2–3 times more likely to have delays in treatment compared to White or privately insured women. While evidence-based care coordination strategies for reducing delays exist, they are not systematically implemented across healthcare settings. Methods Translating Research Into Practice (TRIP) utilizes community engaged research methods to address breast cancer care delivery disparities. Four Massachusetts Clinical and Translational Science Institute (CTSI) hubs collaborated with the Boston Breast Cancer Equity Coalition (The Coalition) to implement an evidence-based care coordination intervention for Boston residents at risk for delays in breast cancer care. The Coalition used a community-driven process to define the problem of care delivery disparities, identify the target population, and develop a rigorous pragmatic approach. We chose a cluster-randomized, stepped-wedge hybrid type I effectiveness-implementation study design. The intervention implements three evidence-based strategies: patient navigation services, a shared patient registry for use across academic medical centers, and a web-based social determinants of health platform to identify and address barriers to care. Primary clinical outcomes include time to first treatment and receipt of guideline-concordant treatment, which are captured through electronic health records abstraction. We will use mixed methods to collect the secondary implementation outcomes of acceptability, adoption/penetration, fidelity, sustainability and cost. Conclusion TRIP utilizes an innovative community-driven research strategy, focused on interdisciplinary collaborations, to design and implement a translational science study that aims to more efficiently integrate proven health services interventions into clinical practice.

Background There is a need for guidelines on patient navigation activities to promote both the quality of patient navigation and the standards of reimbursement for these services because a lack of reimbursement is a major barrier to the implementation, maintenance, and sustainability of these programs. Methods A broad community-based participatory research process was used to identify the needs of patients for navigation. A panel of stakeholders of clinical providers was convened to identify specific activities for navigators to address the needs of patients and providers with the explicit goal of reducing delays in the initiation of cancer treatment and improving adherence to the care plan. Results Specific activities were identified that could be generalized to all patient navigation programs for care during active cancer management to address the needs of vulnerable communities. Conclusions Oncology programs that seek to implement lay patient navigation may benefit from the adoption of these activities for quality monitoring. Such activities are necessary as we consider reimbursement strategies for navigators without clinical training or licensure.

Background: Disparities in breast cancer care are a worsening problem, requiring effective interventions that seek to address the delivery of high quality cancer care. Evidence from interventions designed to improve timeliness of care routinely identify lack of social support as one of the biggest barriers to care. And, social support is associated with adherence to treatment and survival. This study explores predictors of social support in a diverse population of cancer patients. Patients and Methods: This is a secondary analysis of baseline preliminary data from participants enrolled in Project SUPPORT, a randomized controlled comparative effectiveness trial designed to evaluate the impact of patient navigation with or without legal support and services, among women diagnosed with Stages 0-4 breast cancer between 2014-2016. Upon enrollment (within one month of a cancer diagnosis) we administered the Medical Outcomes Survey (MOS) of social support to all participants. This validated survey tool addresses functional support, including an overall score (range 0-95) and 4 distinct domains: Emotional/Informational, Tangible, Affectionate and Positive Social Interaction. Using chi-squared and t-tests we compared MOS scores across socio-demographic variables: age, race, language, insurance, health literacy and marital status. Results: Of the 103 participants, mean age is 54.5 (SD = 10.6); 56% Hispanic, 19% Black, and 22% White and 2% identified as other; the majority had public insurance 76%; 66% speak English, 21% Spanish and 13% Haitian Creole. Only 36% have adequate health literacy as measured by the BRIEF. Only 32% are currently partnered. The overall mean total score for social support is 75.8 (+/- 23.6), median of 78.9 (range 60.5 – 98.7). Participants scored lowest in tangible support (mean score 67.7 +/- 33.1) and highest in affective support (83.5 +/- 25.8). Non-White participants scored significantly lower across all domains (mean overall MOS score 73.3 +/- 2.6) when compared with Whites (mean overall MOS score 84.5 +/- 4.8, p value = 0.04). There were no differences in MOS scores by language, insurance, literacy or marital status. Conclusion: This is the first study to describe social support scores (overall and specific domains) from the validated MOS survey tool among a racially diverse, urban cancer patient population. We found significant differences by race. Studies to identify risks for low social support can help inform future targeted interventions. Citation Format: Ko NY, Festa K, Gunn C, Bak S, Wang N, Nelson K, Flacks J, Morton S, Battaglia TA. Predictors of social support among newly diagnosed breast cancer patients seeking care at an urban safety net academic medical center [abstract]. In: Proceedings of the 2016 San Antonio Breast Cancer Symposium; 2016 Dec 6-10; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2017;77(4 Suppl):Abstract nr P3-10-09.

Despite professional societies' emphasis on women's health in internal medicine (IM) resident curricula, national implementation has varied. This study describes IM program directors' perceptions of women's health topics that residents should master and the current state of women's health education in IM residency programs.We recruited 408 program directors of IM residency programs to complete an electronic cross-sectional survey. Participants were surveyed about expected resident mastery of twelve women's health topics in the context of their program's current characteristics, core curricula, and training opportunities.One hundred twelve IM program directors completed the survey (response rate 27%). The percentage of program directors who perceived that residents should master each of the twelve women's health topics ranged from 48% to 98%, with the most program directors expecting mastery of osteoporosis (N = 110, 98%), sexually transmitted infection (N = 110, 98%), and gender-specific cancer (N = 109, 97%). These topics, however, were not currently included in the core curricula of 6%-12% of programs. Programs offered varied opportunities in women's health, including dedicated women's health electives (N = 76, 68%), concentrations or tracks (N = 8, 7%), and continuity clinics (N = 15, 13%). Most program directors were interested (N = 90, 80%) in expanding women's health opportunities in their programs.While women's health topics were perceived by program directors as a priority for IM resident mastery, certain priority topics and training opportunities were limited. Additional studies are needed to explore barriers to expansion of resident education in women's health and potential solutions.

Given the momentum in adopting patient navigation into cancer care, there is a need to understand the contribution of specific navigator activities to improved clinical outcomes. A mixed-methods study combined direct observations of patient navigators within the Patient Navigation Research Program and outcome data from the trial. We correlated the frequency of navigator tasks with the outcome of rate of diagnostic resolution within 365 days among patients who received the intervention relative to controls. A focused content analysis examined those tasks with the strongest correlations between navigator tasks and patient outcomes. Navigating directly with specific patients (r = 0.679), working with clinical providers to facilitate patient care (r = 0.643), and performing tasks not directly related to their diagnostic evaluation for patients were positively associated with more timely diagnosis (r = 0.714). Using medical records for non-navigation tasks had a negative association (r = -0.643). Content analysis revealed service provision directed at specific patients improved care while systems-focused activities did not.

BACKGROUND Enrollment rates onto cancer clinical trials are low and reflect a small subset of the population of which even fewer participants come from populations of racial or ethnic diversity or low socioeconomic status. There is a need to increase enrollment onto cancer clinical trials with a focus on recruitment of a diverse, underrepresented patient population. OBJECTIVE To use the electronic medical record (EMR) to understand the eligibility and enrollment rates for all available cancer trials in the ambulatory care setting at an urban safety net hospital to identify specific strategies for enhanced accrual onto cancer clinical trials of diverse and underserved patients. METHODS A clinical trial screening note was created for the EMR by the clinical trials office at an urban safety net hospital. 847 cancer clinical trial screening notes were extracted from the EMR between January 1, 2010 and December 31, 2010. During that time, 99 cancer trials were registered for accrual, including clinical treatment, survey, data repository, imaging, and symptom management trials. Data on eligibility, enrollment status, and relationship to sociodemographic status were compared. LIMITATIONS This is a single-institution and retrospective study. CONCLUSIONS The findings demonstrate that a formal process of tracking cancer clinical trial screens using an EMR can document baseline rates of institution-specific accrual patterns and identify targeted strategies for increasing cancer clinical trial enrollment among a vulnerable patient population. Offering nontreatment trials may be an important and strategic method of engaging this vulnerable population in clinical research.