National Institutes of Health Pathways to Prevention Workshop: Achieving Health Equity in Preventive Services.

Expert groups, including the U.S. Preventive Services Task Force (USPSTF), recommend a range of clinical preventive services for persons at average risk for disease. Use of these services often is substantially lower among racial and ethnic minority groups, rural residents, and persons of lower socioeconomic status. On 19 and 20 June 2019, the National Institutes of Health (NIH) convened the Pathways to Prevention Workshop: Achieving Health Equity in Preventive Services to assess the available evidence on disparities in the use of 10 USPSTF-recommended clinical preventive services for cancer, heart disease, and diabetes. The workshop was cosponsored by the NIH Office of Disease Prevention; National Institute on Minority Health and Health Disparities; National Cancer Institute; National Heart, Lung, and Blood Institute; and National Institute of Diabetes and Digestive and Kidney Diseases. A multidisciplinary working group developed the agenda, and an Evidence-based Practice Center prepared the evidence report. During the workshop, invited experts considered the evidence, with discussion among attendees. After weighing evidence from the review, presentations, and public comments, an independent panel prepared a draft report that was posted for public comment. This final report summarizes the panel's findings, identifying current gaps in knowledge. The panel made 26 recommendations for new research and methods development to improve implementation of proven services to reduce disparities in preventable conditions.

Engaging young African American women breast cancer survivors: A novel storytelling approach to identify patient-centred research priorities.

BACKGROUND: Patient-centredness is considered an essential aspiration of a high-quality health-care system, and patient engagement is a critical precursor to patient-centred care. OBJECTIVES: To engage patients, health-care providers and stakeholders in identifying recommendations to address research and practice gaps that impact young African American breast cancer survivors. METHODS: This paper reported an approach for research priority setting. This approach applies an engagement process (January-September 2018) of using patient and stakeholder groups, patient storytelling workshops and a culminating storytelling conference in Wisconsin to generate relevant research topics and recommendations. Topics were prioritized using an iterative engagement process. Research priorities and recommendation were ranked over the conference by counting participants' anonymous votes. RESULTS: One hundred attendees (43 patients/family members, 20 providers/researchers and 37 community members) participated in the conference. Five topics were identified as priorities. The results showed that three priority areas received the most votes, specifically community outreach and education, providing affordable health care and engaging in complementary care practice. Stakeholders also agreed it is critical to 'include youth in the conversation' when planning for cancer support and educational programmes for caregivers, friends and family members. CONCLUSION: Storytelling as a patient engagement approach can build trust in the patient-research partnership, ensure that patients are meaningfully engaged throughout the process and capture the diversity of patient experiences and perspectives.

Community and Research Perspectives on Cancer Disparities in Wisconsin.

INTRODUCTION: Significant disparities are apparent in geographic areas and among racial/ethnic minority groups in Wisconsin. Cancer disparities are complex and multifactorial and require collaborative, multilevel efforts to reduce their impact. Our objective was to understand cancer disparities and identify opportunities to collaborate across community and research sectors to address them. METHODS: From May 2017 through October 2018, we assembled groups of community members and researchers and conducted 10 listening sessions and 29 interviews with a total of 205 participants from diverse backgrounds. Listening sessions and interviews were scheduled on the basis of participant preference and consisted of a brief review of maps illustrating the breast and lung cancer burden across Wisconsin, and a semistructured set of questions regarding causes, solutions, and opportunities. Interviews followed the same structure as listening sessions, but were conducted between a facilitator and 1 or 2 individuals. Major themes were summarized from all sessions and coded. We used the Model for Analysis of Population Health and Health Disparities to identify areas for collaboration and to highlight differences in emphasis between community participants and researchers. RESULTS: Participants identified the need to address individual behavioral risks and medical mistrust and to build equitable multilevel partnerships. Communities provided insights on the impact of environment and location on cancer disparities. Researchers shared thoughts about societal poverty and policy issues, biologic responses, genetic predisposition, and the mechanistic influence of lifestyle factors on cancer incidence and mortality. CONCLUSION: Listening sessions and interviews provided insight into contributors to cancer disparities, barriers to improving outcomes, and opportunities to improve health. The unique perspectives of each group underscored the need for multisector teams to tackle the complex issue of cancer disparities.

Embracing an "African Ethos" to facilitate African immigrants participation in medical genetics and genomics research.

BACKGROUND: Limited published research exists on perceptions and potentials for black African immigrants' participation in medical genetics and genomics research. PURPOSE: This study explores the inclination and disinclination of African immigrants to be involved in genetics and genomics research. METHODS: In-depth qualitative interviews were employed in which a sample of black African immigrants 18 years and older (n = 34) were interviewed. DISCUSSION: Barriers included contrary beliefs and customs about disease and the human body that differs from Western conceptions, and lack of genuine connection to the health care system. Facilitators included promotion of an "African ethos," wherein Africans unite with one another in a communal extension of self and robust community involvement across the life span of genetic studies. CONCLUSION: It is important for researchers and genetic counselors to understand the sociocultural underpinnings of African immigrants about genetics and genomics research as an initial step to encouraging their participation.

Exploratory Study of Breast Cancer Screening Practices of Urban Women: A Closer Look at Who Is and Is Not Getting Screened.

Several initiatives have been embarked upon over the past decade to encourage breast cancer screening and follow-up among women who reside in urban communities. With these efforts, data revealed that many women do not receive the recommended breast cancer screening. Studies have been published in scientific literature that explored barriers faced by women relative to breast cancer screening. But, only a few reports have been published of efforts initiated to define the limits of characteristics of women who have and women who have not been screened. This cross-sectional exploratory study was designed to examine the breast cancer screening practices of women 40-74 years of age and older who reside in a densely populated metropolitan community of S.E. Wisconsin, and to identify and compare the characteristics of women who report breast cancer screening and with characteristics of women who report no breast cancer screening. The organizing framework for this study was derived from the United States Department of Health and Human Services Determinants of Health Model. An investigator-designed instrument was used to assess the influence of age, family history of breast cancer insurance status, characteristics of residential neighborhood and local access to breast care on breast cancer screening. While the majority of the women surveyed reported breast cancer screening, less than half of the women reported screening that was consistent with recommended breast cancer screening guidelines (i.e. annual mammography and annual clinical breast examination). Deficits in breast cancer screening were noted most among women who were uninsured, with no knownfamily history of breast cancer, who resided in low income neighborhoods, inner-city neighborhoods and neighborhoods without facilities for primary breast care. The results of this study demonstrate the needfor clinicians, health care administrators and advocates committed to breast cancer detection and control within targeted communities. They must carefully assess the impact of individual, social and structural factors on breast cancer screening, and the need to design initiatives specifically targeted to women who have received less than optimal or no breast cancer screening.

Randomized trial of therapeutic group by teleconference: African American women with breast cancer.

BACKGROUND: The effects of a therapeutic group by teleconference for African American women with breast cancer have not been documented, although the benefits of therapeutic groups for European women are well established. African American women with breast cancer may experience social disconnection, a sense of being cut off from partners, family, and friends because of side effects of treatment and fatalistic beliefs about cancer. A therapeutic group by teleconference may counteract these problems and improve social connection. METHODS: A randomized trial design stratified by treatment type was used. Data were collected at baseline, at the end of the intervention, and 16 weeks from baseline. Repeated-measures, fixed-factor analyses of covariance were used for each outcome. The between-subject factors were group and replicate set, and the within-subject factor was time. Physical well being and educational level differed significantly between the 2 groups at baseline and were used as covariates. RESULTS: The mixed-model analysis of the outcome variables revealed significant changes over time for knowledge (P ≤ .001), with higher scores on knowledge observed for the control group. Group-by-time interactions were observed for fatalism (P = .0276), fear (P = .0163), and social connection (P = .0174) as measured by the Social Well Being subscale from the Functional Assessment of Cancer Treatment-Breast Cancer Version. No group-by-time interaction was observed for social connection as measured by the Social Support Questionnaire. Social connection measured with the Social Well Being subscale improved significantly in the intervention group, whereas fatalism and fear significantly decreased. CONCLUSIONS: In this study, the authors documented the benefits of a therapeutic group by teleconference, a novel way to provide support for African American women with breast cancer. Further research should include a behavioral outcome, such as treatment adherence.

The Effect of Racism and Discrimination on the Health of Milwaukee's African American Population.

BACKGROUND: This scoping review focuses on the intersections of racism, health, and health care, as well as interventions for the African American population in Milwaukee, Wisconsin-one of the most hypersegregated regions in the country. We investigate what existing research provides about the impact of segregation and racism on health and consider how community setting informs health interventions, practice, and policy. METHODS: We analyzed studies that address racism and health in Milwaukee to assess the state of the science in this area. We searched databases using the terms "African American," "racism," "segregation," and "health." A total of 296 studies resulted, and 54 met the inclusion criteria. RESULTS: Racism is a known determinant of health. However, a lack of research investigating the impact of racism on health in Milwaukee County leaves a knowledge gap necessary for improving health among African American residents. The adverse effects of racism on health are compounded by the social, economic, and policy context of geographic and social segregation that limit access to care and resilience. Themes identified in the review include measures of physical and mental health, community factors related to health (eg, housing, environmental contamination, economic and social exclusion), intervention strategies, and theoretical gaps. DISCUSSION: Professionals must work across disciplines and social sectors to address the effects of racism on the physical and mental health of African American individuals in urban metropolitan environments. Health research and medical interventions in hypersegregated communities must center structural racism in their analysis.

National Institutes of Health State-of-the-Science Conference Statement: Family History and Improving Health.

National Institutes of Health consensus and state-of-the science statements are prepared by independent panels of health professionals and public representatives on the basis of 1) the results of a systematic literature review prepared under contract with the Agency for Healthcare Research and Quality (AHRQ); 2) presentations by investigators working in areas relevant to the conference questions during a 2-day public session; 3) questions and statements from conference attendees during open discussion periods that are part of the public session; and 4) closed deliberations by the panel during the remainder of the second day and morning of the third. This statement is an independent report of the panel and is not a policy statement of the National Institutes of Health or the U.S. government. The statement reflects the panel's assessment of medical knowledge available at the time the statement was written. Thus, it provides a "snapshot in time" of the state of knowledge on the conference topic. When reading the statement, keep in mind that new knowledge is inevitably accumulating through medical research.

Breast cancer screening behaviors of African American women: a comprehensive review, analysis, and critique of nursing research.

Breast cancer is particularly burdensome on African American women (AAW) ranking second among the cause of cancer deaths in AAW. Although the incidence of breast cancer is highest in White women, AAW have a higher breast cancer mortality rate at every age and a lower survival rate than any other racial or ethnic group. Statistics indicate that the gap is widening. The results of several studies suggest that breast cancer mortality among AAW would be reduced if breast cancer screening recommendations were more effectively utilized. Results of research studies aimed at identifying variables relating to AAW acceptance of breast cancer screening activities have not had an impact on the disparity in mortality rates. The goals of this paper are to summarize the accumulated state of the nursing science and knowledge concerning breast cancer screening behavior of African American women, and to highlight important issues that research has left unresolved.

Eliminating cancer-related disparities: how nurses can respond to the challenge.

OBJECTIVES: To review disparities in cancer incidence and mortality among several distinct population groups in the US and the challenges nurses face in eliminating these disparities. DATA SOURCES: Journal articles, books, and government reports. CONCLUSION: Despite the phenomenal progress in cancer detection and control, many populations in the US suffer needlessly and die from potentially curable cancers. IMPLICATIONS FOR NURSING PRACTICE: Nurses can address cancer care needs of population groups at increased risk for developing and/or dying from cancer.

Challenges and opportunities for HIV prevention and care: insights from focus groups of HIV-infected African American men.

Given the inordinate burden of HIV illness borne by African American men, investigations of HIV prevention and care in this population are urgently needed. In this qualitative study, a sample of 20 HIV-infected African American men participated in two focus groups in which they exchanged experiences and ideas about living with HIV. They shared details about how they were personally impacted by HIV, and together they constructed a perspective on the larger societal context in which the HIV infection rate among African American men continues unabated. The men focused on growing complacency about HIV/AIDS in the United States, underfunding of supports and services, stigmas operative in African American communities, and differential care based on race, gender, and diagnosis. They saw opportunity in personal strategies that help individual men infected with HIV to take a more empowered stance to deal with the disease and improve their health but looked for changes undertaken by African Americans at the community level to make a real difference in the epidemic. Their vision included enhanced support for HIV prevention and care from influential community institutions like Black churches, more open dialogue about drugs and sexual behavior, and capacity-building for families whose members are HIV-infected or at risk for HIV.

Community leaders' perspectives on engaging African Americans in biobanks and other human genetics initiatives.

There is limited information about what African Americans think about biobanks and the ethical questions surrounding them. Likewise, there is a gap in capacity to successfully enroll African Americans as biobank donors. The purposes of this community-based participatory study were to: (a) explore African Americans' perspectives on genetics/genomic research, (b) understand facilitators and barriers to participation in such studies, and (c) enlist their ideas about how to attract and sustain engagement of African Americans in genetics initiatives. As the first phase in a mixed methods study, we conducted four focus groups with 21 African American community leaders in one US Midwest city. The sample consisted of executive directors of community organizations and prominent community activists. Data were analyzed thematically. Skepticism about biomedical research and lack of trust characterized discussions about biomedical research and biobanks. The Tuskegee Untreated Syphilis Study and the Henrietta Lacks case influenced their desire to protect their community from harm and exploitation. Connections between genetics and family history made genetics/genomics research personal, pitting intrusion into private affairs against solutions. Participants also expressed concerns about ethical issues involved in genomics research, calling attention to how research had previously been conducted in their community. Participants hoped personalized medicine might bring health benefits to their people and proposed African American communities have a "seat at the table." They called for basic respect, authentic collaboration, bidirectional education, transparency and prerogative, and meaningful benefits and remuneration. Key to building trust and overcoming African Americans' trepidation and resistance to participation in biobanks are early and persistent engagement with the community, partnerships with community stakeholders to map research priorities, ethical conduct of research, and a guarantee of equitable distribution of benefits from genomics discoveries.

Enhancing the participation of african americans in health-related genetic research: findings of a collaborative academic and community-based research study.

The involvement of African Americans in research has long been expressed as a concern by the scientific community. While efforts have been undertaken to identify factors inhibiting the participation of African Americans in health-related research, few efforts have been undertaken to have highlight factors associated with their engagement of health-related research. An exploratory study of factors presumed to be associated with participation in health-related research was conducted among a nonprobability sample of African Americans (n = 212) from a large urban community in the Midwest. The study was guided by a framework that hypothesized the influence of knowledge, beliefs, and perceptions about genetics and the involvement of providers in decision-making on willingness to participate in health-related genetic research. The results revealed that knowledge, beliefs, and perceptions about genetics and the involvement of providers were associated with willingness to engage in health-related genetic research (P < .05). The most interesting, however, was that 88.7% of the participants who had not previously been involved in a health-related study who expressed a willingness to participate reported that they "had never been asked." Study findings suggest the need for research that further examines factors associated with the involvement of African Americans in health-related genetic research.

Randomized trial of a lay health advisor and computer intervention to increase mammography screening in African American women.

BACKGROUND: Low-income African American women face numerous barriers to mammography screening. We tested the efficacy of a combined interactive computer program and lay health advisor intervention to increase mammography screening. METHODS: In this randomized, single blind study, participants were 181 African American female health center patients of ages 41 to 75 years, at < or =250% of poverty level, with no breast cancer history, and with no screening mammogram in the past 15 months. They were assigned to either (a) a low-dose comparison group consisting of a culturally appropriate mammography screening pamphlet or (b) interactive, tailored computer instruction at baseline and four monthly lay health advisor counseling sessions. Self-reported screening data were collected at baseline and 6 months and verified by medical record. RESULTS: For intent-to-treat analysis of primary outcome (medical record-verified mammography screening, available on all but two participants), the intervention group had increased screening to 51% (45 of 89) compared with 18% (16 of 90) for the comparison group at 6 months. When adjusted for employment status, disability, first-degree relatives with breast cancer, health insurance, and previous breast biopsies, the intervention group was three times more likely (adjusted relative risk, 2.7; 95% confidence interval, 1.8-3.7; P < 0.0001) to get screened than the low-dose comparison group. Similar results were found for self-reported mammography stage of screening adoption. CONCLUSIONS: The combined intervention was efficacious in improving mammography screening in low-income African American women, with an unadjusted effect size (relative risk, 2.84) significantly higher (P < 0.05) than that in previous studies of each intervention alone.

National Institutes of Health State-of-the-Science Conference statement: Diagnosis and Management of Ductal Carcinoma In Situ September 22-24, 2009.

OBJECTIVE: To provide health-care providers, patients, and the general public with a responsible assessment of currently available data on the diagnosis and management of ductal carcinoma in situ (DCIS). PARTICIPANTS: A non-Department of Health and Human Services, nonadvocate, 14-member panel representing the fields of oncology, radiology, surgery (general and reconstructive), pathology, radiation oncology, internal medicine, epidemiology, biostatistics, nursing, obstetrics and gynecology, preventative medicine and population health, and social work. In addition, 22 experts from pertinent fields presented data to the panel and conference audience. EVIDENCE: Presentations by experts and a systematic review of the literature prepared by the Minnesota Evidence-based Practice Center, through the Agency for Healthcare Research and Quality. Scientific evidence was given precedence over anecdotal experience. CONFERENCE PROCESS: The panel drafted its statement based on scientific evidence presented in open forum and on published scientific literature. The draft statement was presented on the final day of the conference and circulated to the audience for comment. The panel released a revised statement later that day at http://consensus.nih.gov. This statement is an independent report of the panel and is not a policy statement of the National Institutes of Health or the Federal Government. CONCLUSIONS: Clearly, the diagnosis and management of DCIS is highly complex with many unanswered questions, including the fundamental natural history of untreated disease. Because of the noninvasive nature of DCIS, coupled with its favorable prognosis, strong consideration should be given to elimination of the use of the anxiety-producing term "carcinoma" from the description of DCIS. The outcomes in women treated with available therapies are excellent. Thus, the primary question for future research must focus on the accurate identification of patient subsets diagnosed with DCIS, including those persons who may be managed with less therapeutic intervention without sacrificing the excellent outcomes presently achieved. Essential in this quest will be the development and validation of accurate risk stratification methods based on a comprehensive understanding of the clinical, pathological, and biological factors associated with DCIS.

NIH state-of-the-science conference statement: diagnosis and management of ductal carcinoma in situ (DCIS).

OBJECTIVE: To provide health care providers, patients, and the general public with a responsible assessment of currently available data on the diagnosis and management of ductal carcinoma in situ (DCIS). PARTICIPANTS: An non-DHHS, nonadvocate 14-member panel representing the fields of fields of oncology, radiology, surgery (general and reconstructive), pathology, radiation oncology, internal medicine, epidemiology, biostatistics, nursing, obstetrics and gynecology, preventative medicine and population health, and social work. In addition, 22 experts from pertinent fields presented data to the panel and conference audience. EVIDENCE: Presentations by experts and a systematic review of the literature prepared by the Minnesota Evidence-based Practice Center, through the Agency for Healthcare Research and Quality. Scientific evidence was given precedence over anecdotal experience. CONFERENCE PROCESS: The panel drafted its statement based on scientific evidence presented in open forum and on published scientific literature. The draft statement was presented on the final day of the conference and circulated to the audience for comment. The panel released a revised statement later that day at http://consensus.nih.gov. This statement is an independent report of the panel and is not a policy statement of the NIH or the Federal Government. CONCLUSIONS: The diagnosis and management of DCIS is highly complex with many unanswered questions, including the fundamental natural history of untreated disease. Because of the noninvasive nature of DCIS, coupled with its favorable prognosis, strong consideration should be given to remove the anxiety-producing term "carcinoma" from the description of DCIS. The outcomes in women treated with available therapies are excellent. Thus, the primary question for future research must focus on the accurate identification of patient subsets diagnosed with DCIS, including those persons who may be managed with less therapeutic intervention without sacrificing the excellent outcomes presently achieved. Essential in this quest will be the development and validation of accurate risk stratification methods based on a comprehensive understanding of the clinical, radiological, pathological, and biological factors associated with DCIS.