Community-Driven Conversations: Partnership Building through CHEC-Ins.

BACKGROUND: Chicago's systemically underserved communities have disproportionately high cancer rates. The Chicago Cancer Health Equity Collaborative (ChicagoCHEC) brings together academic and community partners to address these health inequities. The community conversations known as "CHEC-Ins" provide a space for community members to voice their experiences and needs and for ChicagoCHEC to fulfill its commitment to advancing health equity through collaboration and action. OBJECTIVE: This paper presents a community-generated approach to social networking about cancer health issues known as CHEC-Ins. Through this innovative approach, community members and organizations share cancer related information and experiences, as well as needs and concerns, which are then channeled to ChicagoCHEC academic and administrative members who incorporate them into outreach and research activities. In this way, community members set the agenda and the process and collect the information they deem relevant and important. This paper describes the process of organizing and conducting two pilot CHEC-Ins and the model of this approach, which we intend to employ moving forward to advance partnership building and collaborative research practice between academic institutions and community partners and organizations. This paper contributes a unique model of community-generated and led outreach as a cornerstone of the ChicagoCHEC approach to community engagement. METHODS: The leaders of the ChicagoCHEC Community Steering Committee spearheaded the design and implementation of CHEC-Ins, including developing the question guide and hosting events within their organizations. LESSONS LEARNED: CHEC-Ins proved to be a valuable strategy for defining the role of community partners and establishing the basis for a bi-directional flow of information, resources, and productive action. The two pilot CHEC-Ins revealed important insights related to sources of cancer information, meanings and associated attitudes, barriers to access and use of health services, and social support systems in the communities where ChicagoCHEC works. We will implement this approach and continue to refine it as we conduct CHECIns moving forward.

What does it mean to be affiliated with care?: Delphi consensus on the definition of "unaffiliation" and "specialist" in sickle cell disease.

Accruing evidence reveals best practices for how to help individuals living with Sickle Cell Disease (SCD); yet, the implementation of these evidence-based practices in healthcare settings is lacking. The Sickle Cell Disease Implementation Consortium (SCDIC) is a national consortium that uses implementation science to identify and address barriers to care in SCD. The SCDIC seeks to understand how and why patients become unaffiliated from care and determine strategies to identify and connect patients to care. A challenge, however, is the lack of agreed-upon definition for what it means to be unaffiliated and what it means to be a "SCD expert provider". In this study, we conducted a Delphi process to obtain expert consensus on what it means to be an "unaffiliated patient" with SCD and to define an "SCD specialist," as no standard definition is available. Twenty-eight SCD experts participated in three rounds of questions. Consensus was defined as 80% or more of respondents agreeing. Experts reached consensus that an individual with SCD who is unaffiliated from care is "someone who has not been seen by a sickle cell specialist in at least a year." A sickle cell specialist was defined as someone with knowledge and experience in SCD. Having "knowledge" means: being knowledgeable of the 2014 NIH Guidelines, "Evidence-Based Management of SCD", trained in hydroxyurea management and transfusions, trained on screening for organ damage in SCD, trained in pain management and on SCD emergencies, and is aware of psychosocial and cognitive issues in SCD. Experiences that are expected of a SCD specialist include experience working with SCD patients, mentored by a SCD specialist, regular attendance at SCD conferences, and obtains continuing medical education on SCD every 2 years." The results have strong implications for future research, practice, and policy related to SCD by helping to lay a foundation for an new area of research (e.g., to identify subpopulations of unaffiliation and targeted interventions) and policies that support reaffiliation and increase accessibility to quality care.

Pilot study of a culturally sensitive intervention to promote genetic counseling for breast cancer risk.

BACKGROUND: Despite the benefits of genetic counseling and testing, uptake of cancer genetic services is generally low and Black/African American (Black) women are substantially less likely to receive genetic services than non-Hispanic White women. Our team developed a culturally sensitive, narrative decision aid video to promote uptake of genetic counseling among Black women at risk for a hereditary breast cancer syndrome that can be incorporated in conjunction with population-based cancer risk assessment in a clinical setting. We report here a pilot study to demonstrate changes in intention to access genetic counseling and intervention satisfaction. METHODS: Black women who were personally unaffected by breast cancer and were recommended for genetic counseling based on family history screening in a mammography center were recruited at the time of the mammogram. A prospective, pre-post survey study design, guided by theoretical constructs, was used to evaluate baseline and immediate post-intervention psychosocial factors, including intention to participate in genetic counseling and intervention satisfaction. RESULTS: Pilot recruitment goals were met (n = 30). Pre-intervention, 50% of participants indicated that they were extremely likely to make a genetic counseling appointment, compared with 70% post-intervention (p = 0.05). After watching the intervention, 50% of participants indicated that the video changed their mind regarding genetic counseling. CONCLUSIONS: This study demonstrated cultural satisfaction with a decision aid intervention designed to motivate Black women with hereditary breast cancer risk to attend a genetic counseling appointment. Our study showed that intention may be a specific and key construct to target in interventions designed to support decision-making about genetic services. Study results informed the design of a subsequent large scale, randomized implementation study. TRIAL REGISTRATION: Trial registration: Clinicaltrials.gov NCT04082117 . Registered September 9, 2019. Retrospectively registered.

Association of Population Screening for Breast Cancer Risk With Use of Mammography Among Women in Medically Underserved Racial and Ethnic Minority Groups.

Importance: Black women bear a disproportionate burden of breast cancer mortality in the US, in part due to inequities in the use of mammography. Population screening for breast cancer risk in primary care is a promising strategy for mitigating breast cancer disparities, but it is unknown whether this strategy would be associated with increased mammography rates in underserved women of racial and ethnic minority groups. Objective: To examine whether providing individualized breast cancer risk estimates is associated with an increase in the rate of screening mammography. Design, Setting, and Participants: A cohort study was conducted in women receiving individualized risk estimates as part of routine primary health care at federally qualified health centers in medically underserved communities in Chicago, Illinois. The study was conducted from November 5, 2013, to December 19, 2014, with data acquisition completed on March 5, 2017; data analysis was performed from December 30, 2020, to February 2, 2021. A total of 347 women aged 25 to 69 years without a personal history of breast cancer presenting for an annual visit with their primary care clinician were enrolled. Exposures: Breast cancer risk estimates were obtained with validated risk assessment tools as a standard component of the clinic check-in process. One of 4 women at average risk and all women at high risk were invited to participate in the study. Main Outcomes and Measures: The primary outcome was the mammography rate during 18 months of usual care compared with the rate during 18 months after implementation of risk assessment. Results: Of the 347 women enrolled, 188 were age-eligible for mammography and were included in the analysis (mean [SD] age, 50.8 [7.04] years); 70 women (37.2%) were Hispanic, 114 (60.6%) were non-Hispanic African American, and 4 (2.1%) were from other racial and ethnic groups (4 non-Hispanic White women). Ninety-eight women (52.1%) had an average risk of developing breast cancer and 90 (47.9%) were at high risk. Overall, there was a nonsignificant increase in the mammography rate, from 38.8% during usual care to 48.9% following implementation of risk assessment (odds ratio, 1.37; 95% CI, 0.92-2.03). In preplanned subgroup analysis, the mammography rate among women at high risk was significantly higher after vs before risk assessment (51.1% vs 36.6%; odds ratio, 1.88; 95% CI, 1.10-3.23). Conclusions and Relevance: In this study, providing individualized breast cancer risk estimates as a component of primary health care in federally qualified health centers was associated with increased use of mammography among women of racial and ethnic minority groups who were at high risk. Implementation of this approach in underserved communities could promote equity in the use of mammography and reduce racial disparities in breast cancer mortality. This strategy warrants further investigation.

Development of a culturally sensitive narrative intervention to promote genetic counseling among African American women at risk for hereditary breast cancer.

BACKGROUND: African American women with hereditary breast cancer risk are less likely to undergo genetic counseling and testing compared with non-Hispanic White women. Inequities in the use of precision cancer care are likely to exacerbate racial disparities in cancer outcomes. A culturally sensitive multimedia narrative intervention was developed to motivate African American women at risk for hereditary breast cancer to engage in genetic counseling. METHODS: Development of the intervention was grounded in the Integrative Model of Behavioral Prediction using a phenomenological, deductive approach and employed multiple qualitative methods for data collection, including 1-on-1 interviews and story circles with members of the target audience to identify salient themes and lived experiences. Focus group testing was then conducted with members of the group of focus, primary care providers, and community stakeholders. RESULTS: Six themes that mapped to the theoretical model were identified. Lived experiences were abstracted from story circle data to create a narrative storyline. Educational content and motivational messaging derived from the 6 themes were embedded into the script. Focus group testing with stakeholder groups was used to refine the intervention. Testing of the final multimedia narrative with focus groups indicated that the intervention was culturally sensitive and authentic, and the messaging was effective. CONCLUSIONS: Multiple qualitative data collection methods and a robust theoretical framework of health behavior were key elements for this study to develop a culturally sensitive, narrative intervention that reflects lived experiences and motivates underserved African American women with hereditary breast cancer risk to engage in genetic counseling. This strategy can be applied to mitigate racial inequities in the use of other genomic approaches for personalizing cancer care.

Lung Cancer Screening and Epigenetics in African Americans: The Role of the Socioecological Framework.

Lung cancer is the leading cause of cancer morbidity and mortality in the U.S. and racial/ethnic minorities carry the greatest burden of lung cancer disparities with African Americans (AAs) impacted disproportionately. Inequities in lung cancer health disparities are often associated with multiple bio-behavioral and socio-cultural factors among racial/ethnic minorities. Epigenetic research has advanced the understanding of the intersectionality between biological and socio-cultural factors in lung cancer disparities among AAs. However, gaps exist in the engagement of diverse populations in epigenetic lung cancer research, which poses a challenge in ensuring the generalizability and implementation of epigenetic research in populations that carry an unequal cancer burden. Grounding epigenetic lung cancer research within a socio-ecological framework may prove promising in implementing a multi-level approach to community engagement, screening, navigation, and research participation among AAs. The University of Illinois Cancer Center (UI Cancer Center) is employing an evidence-based (EB) model of community/patient engagement utilizing the socio-ecological model (SEM) to develop a culturally sensitive epigenetic lung cancer research program that addresses multiple factors that impact lung cancer outcomes in AAs. By implementing epigenetic research within a group of Federally Qualified Health Centers (FQHCs) guided by the SEM, the UI Cancer Center is proposing a new pathway in mitigating lung cancer disparities in underserved communities. At the individual level, the framework examines tobacco use among patients at FQHCs (the organizational level) and also tailors epigenetic research to explore innovative biomarkers in high risk populations. Interpersonal interventions use Patient Navigators to support navigation to EB tobacco cessation resources and lung cancer screening. Community level support within the SEM is developed by ongoing partnerships with local and national partners such as the American Lung Association (ALA) and the American Cancer Society (ACS). Lastly, at the policy level, the UI Cancer Center acknowledges the role of policy implications in lung cancer screening and advocates for policies and screening recommendations that examine the current guidelines from the United States Preventive Services Task Force (USPTF).

A feasibility study of breast cancer genetic risk assessment in a federally qualified health center.

BACKGROUND: The US Preventive Services Task Force (USPSTF) endorses routine screening for genetic risk of breast and/or ovarian cancer as a component of primary health care. Implementation of this recommendation may prove challenging, especially in clinics serving disadvantaged communities. METHODS: The authors tested the feasibility of implementing the USPSTF mandate at a federally qualified health center (FQHC) to identify women who were eligible for genetic counseling (GC). A 12-month usual-care phase was followed by a 12-month intervention phase, during which time cancer genetic risk assessment (CGRA) was systematically performed for all women aged 25 to 69 years who presented for an annual examination. Women who were eligible for GC were recruited to participate in the study. RESULTS: After initiating CGRA, 112 women who were eligible for GC consented to study participation, and 56% of them received a referral for GC from their primary care physician. A subgroup of 50 participants were seen by the same primary care physician during both the usual-care and intervention phases. None of these patients was referred for GC during usual care, compared with 64% after the initiation of CGRA (P < .001). Only 16% of referred participants attended a GC session. CONCLUSIONS: Implementing USPSTF recommendations for CGRA as a standard component of primary health care in FQHCs is feasible and improves referral of minority women for GC, but more work is needed to understand the beliefs and barriers that prevent many underserved women from accessing cancer genetic services.

Facilitating primary care provider use in a patient-centered medical home intervention study for chronic hemodialysis patients.

Patients with chronic kidney disease have a high disease burand may benefit from primary care services and care coord A medical home model with direct access to primary care services is one approach that may address this need, yet has not been examined. As a substudy of the Patient-Centered Outcomes Research Institute (PCORI) patient-centered medical home for kidney disease (PCMH-KD) health system intervention study, we examined the uptake of free primary care physician (PCP) services. The PCORI PCMH-KD study was an initial step toward integrating PCPs, a nurse coordinator, a pharmacist, and community health workers (CHWs) within the health care delivery team. Adult chronic hemodialysis (CHD) at two urban dialysis centers were enrolled in the intervention. We examined trends and factors associated with the use of the PCMH-KD PCP among two groups of patients based on their report of having a regular physician for at least six months (established-PCP) or not (no-PCP). Of the 173 enrolled patients, 91 (53%) patients had at least one visit with the PCMH-KD PCP. The rate of visits was higher in those in the no-PCP group compared with those in the established-PCP group (62% vs. 41%, respectively). Having more visits with the CHW was positively associated with having a visit with the PCMH-KD PCPs for both groups. Embedded CHWs within the care team played a role in facilithe uptake of PCMH-KD PCP. Lessons from this health system intervention can inform future approaches on the integration of PCPs and care coordination for CHD patients.

Racial Disparities in Breast Cancer Survival: The Mediating Effects of Macro-Social Context and Social Network Factors.

This study attempts to clarify the associations between macro-social and social network factors and the continuing racial disparities in breast cancer survival. The study improves on prior methodologies by using a neighborhood disadvantage measure that assesses both economic and social disadvantage and an ego-network measurement tool that assesses key social network characteristics. Our population-based sample included 786 breast cancer patients (nHWhite=388; nHBlack=398) diagnosed during 2005-2008 in Chicago, IL. The data included census-derived macro-social context, self-reported social network, self-reported demographic and medically abstracted health measures. Mortality data from the National Death Index (NDI) were used to determine 5-year survival. Based on our findings, neighborhood concentrated disadvantage was negatively associated with survival among nHBlack and nHWhite breast cancer patients. In unadjusted models, social network size, network density, practical support, and financial support were positively associated with 5-year survival. However, in adjusted models only practical support was associated with 5-year survival. Our findings suggested that the association between network size and breast cancer survival is sensitive to scaling of the network measure, which helps to explain inconsistencies in past findings. Social networks of nHWhites and nHBlacks differed in size, social support dimensions, network density, and geographic proximity. Among social factors, residence in disadvantaged neighborhoods and unmet practical support explained some of the racial disparity in survival. Differences in late stage diagnosis and comorbidities between nHWhites and nHBlacks also explained some of the racial disparity in survival. Our findings highlight the relevance of social factors, both macro and inter-personal in the racial disparity in breast cancer survival. Findings suggest that reduced survival of nHBlack women is in part due to low social network resources and residence in socially and economically deprived neighborhoods. To improve survival among breast cancer patients social policies need to continue improving health care access as well as racially patterned social and economic disadvantage.

Evaluating a novel health system intervention for chronic kidney disease care using the RE-AIM framework: Insights after two years.

INTRODUCTION: Using a quasi-experimental design, we implemented the Patient-Centered Medical Home for Kidney Disease (PCMH-KD), a comprehensive, multidisciplinary care team to improve quality of life and healthcare coordination for adult chronic hemodialysis (CHD) patients. This paper highlights our experience in the first two years of the study. We focus on the process dimensions of Reach, Adoption, and Implementation within the context of the RE-AIM framework. MATERIALS AND METHODS: We established a new PCMH-KD model at two outpatient dialysis centers. During the intervention phase, adult patients were recruited for participation and data collection. We monitored RE-AIM measures to identify areas for potential adaptation of the care model. RESULTS: During the start-up phase, we engaged patients and stakeholders in planning the intervention, established the new PCMH-KD team, and trained new and continuing clinicians and staff at two dialysis centers. In the intervention phase we recruited 155 patients to participate. Patients had individual visits with the PCP (40%) and the CHWs (92%) (Reach). Patient feedback informed procedures for appointment scheduling (Adoption). The new PCMH-KD team members were consistent in their roles. With staff changes, some responsibilities were adapted for cross coverage (Implementation). IMPLICATIONS: After one year of start-up and one year of intervention, active monitoring of Reach, Implementation and Adoption measures have facilitated necessary adaptions in the planned intervention to accommodate scheduling demands and patient feedback in the PCMH-KD model. Insights from this trial may inform care of CHD patients more broadly.