Leveraging human-centered design and causal pathway diagramming toward enhanced specification and development of innovative implementation strategies: a case example of an outreach tool to address racial inequities in breast cancer screening.

BACKGROUND: Implementation strategies are strategies to improve uptake of evidence-based practices or interventions and are essential to implementation science. Developing or tailoring implementation strategies may benefit from integrating approaches from other disciplines; yet current guidance on how to effectively incorporate methods from other disciplines to develop and refine innovative implementation strategies is limited. We describe an approach that combines community-engaged methods, human-centered design (HCD) methods, and causal pathway diagramming (CPD)-an implementation science tool to map an implementation strategy as it is intended to work-to develop innovative implementation strategies. METHODS: We use a case example of developing a conversational agent or chatbot to address racial inequities in breast cancer screening via mammography. With an interdisciplinary team including community members and operational leaders, we conducted a rapid evidence review and elicited qualitative data through interviews and focus groups using HCD methods to identify and prioritize key determinants (facilitators and barriers) of the evidence-based intervention (breast cancer screening) and the implementation strategy (chatbot). We developed a CPD using key determinants and proposed strategy mechanisms and proximal outcomes based in conceptual frameworks. RESULTS: We identified key determinants for breast cancer screening and for the chatbot implementation strategy. Mistrust was a key barrier to both completing breast cancer screening and using the chatbot. We focused design for the initial chatbot interaction to engender trust and developed a CPD to guide chatbot development. We used the persuasive health message framework and conceptual frameworks about trust from marketing and artificial intelligence disciplines. We developed a CPD for the initial interaction with the chatbot with engagement as a mechanism to use and trust as a proximal outcome leading to further engagement with the chatbot. CONCLUSIONS: The use of interdisciplinary methods is core to implementation science. HCD is a particularly synergistic discipline with multiple existing applications of HCD to implementation research. We present an extension of this work and an example of the potential value in an integrated community-engaged approach of HCD and implementation science researchers and methods to combine strengths of both disciplines and develop human-centered implementation strategies rooted in causal perspective and healthcare equity.

Study Protocol for the Social Interventions for Support During Treatment for Endometrial Cancer and Recurrence (SISTER) study: a community engaged national randomized trial.

Aim: Social isolation in cancer patients is correlated with prognosis and is a potential mediator of treatment completion. Black women with endometrial cancer (EC) are at increased risk for social isolation when compared with White patients. We developed the Social Interventions for Support during Treatment for Endometrial Cancer and Recurrence (SISTER) study to compare and evaluate interventions to address social isolation among Black women with high-risk EC in USA. The primary objective of the SISTER study is to determine whether virtual support interventions improve treatment completion compared with Enhanced Usual Care. Secondary objectives include comparing effectiveness virtual evidence-based interventions and evaluating barriers and facilitators to social support delivery. Patients & methods: This is a multi-site prospective, open-label, community-engaged randomized controlled trial, consisting of three intervention arms: enhanced usual care, facilitated support group and one-to-one peer support. Primary outcome will be measured using relative dose. Qualitative semi-structured interviews will be conducted with a subset of participants to contextualize the relative degree or lack thereof of social isolation, over time. Data analysis: Primary analysis will be based on an intent-to-treat analysis. Multivariable analysis will be performed to determine the effect of the intervention on the primary and secondary outcomes of interest, relative dose and social isolation score. Semi-structured interviews will be qualitatively analyzed using inductive and deductive approaches of content analysis. Discussion/conclusion: Endometrial cancer mortality disproportionately affects Black women, and social isolation contributes to this disparity. The SISTER study aims to identify whether and to what extent differing social support vehicles improve key outcomes for Black women in the United States with high-risk EC. Clinical Trial Registration: NCT04930159 (ClinicalTrials.gov).

The Integration of Value Assessment and Social Network Methods for Breast Health Navigation Among African Americans.

OBJECTIVES: A major strategy to reduce the impact of breast cancer (BC) among African Americans (AA) is patient navigation, defined here as individualized assistance for reducing barriers to healthcare use. The primary focus of this study was to estimate the added value of incorporating breast health promotion by navigated participants and the subsequent BC screenings that network members may obtain. METHODS: In this study, we compared the cost-effectiveness of navigation across 2 scenarios. First, we examine the effect of navigation on AA participants (scenario 1). Second, we examine the effect of navigation on AA participants and their networks (scenario 2). We leverage data from multiple studies in South Chicago. Our primary outcome (BC screening) is intermediate, given limited available quantitative data on the long-term benefits of BC screening for AA populations. RESULTS: When considering participant effects alone (scenario 1), the incremental cost-effectiveness ratio was $3845 per additional screening mammogram. When including participant and network effects (scenario 2), the incremental cost-effectiveness ratio was $1098 per additional screening mammogram. CONCLUSION: Our findings suggest that inclusion of network effects can contribute to a more precise, comprehensive assessment of interventions for underserved communities.

Increasing Racial and Ethnic Diversity in Cancer Clinical Trials: An American Society of Clinical Oncology and Association of Community Cancer Centers Joint Research Statement.

A concerted commitment across research stakeholders is necessary to increase equity, diversity, and inclusion (EDI) and address barriers to cancer clinical trial recruitment and participation. Racial and ethnic diversity among trial participants is key to understanding intrinsic and extrinsic factors that may affect patient response to cancer treatments. This ASCO and Association of Community Cancer Centers (ACCC) Research Statement presents specific recommendations and strategies for the research community to improve EDI in cancer clinical trials. There are six overarching recommendations: (1) clinical trials are an integral component of high-quality cancer care, and every person with cancer should have the opportunity to participate; (2) trial sponsors and investigators should design and implement trials with a focus on reducing barriers and enhancing EDI, and work with sites to conduct trials in ways that increase participation of under-represented populations; (3) trial sponsors, researchers, and sites should form long-standing partnerships with patients, patient advocacy groups, and community leaders and groups; (4) anyone designing or conducting trials should complete recurring education, training, and evaluation to demonstrate and maintain cross-cultural competencies, mitigation of bias, effective communication, and a commitment to achieving EDI; (5) research stakeholders should invest in programs and policies that increase EDI in trials and in the research workforce; and (6) research stakeholders should collect and publish aggregate data on racial and ethnic diversity of trial participants when reporting results of trials, programs, and interventions to increase EDI. The recommendations are intended to serve as a guide for the research community to improve participation rates among people from racial and ethnic minority populations historically under-represented in cancer clinical trials. ASCO and ACCC will work at all levels to advance the recommendations in this publication.

"We Are a Powerful Movement": Evaluation of an Endometrial Cancer Education Program for Black Women.

BACKGROUND: U.S. Black women with endometrial cancer (EC) have a 90% higher mortality rate than White women, driven in part by advanced stage at diagnosis. Black women have expressed reasons for care-seeking delay: misattribution of postmenopausal bleeding, symptom endurance, and community silence regarding vaginal bleeding. OBJECTIVES: In this community-based participatory research study, we adapted, implemented, and evaluated an education program addressing these factors. METHODS: We adapted an evidenced-based education curriculum-Community Empowerment Partners (CEPs©)-using Public Health Critical Race Praxis and the Health Belief Model. Black EC survivors completed CEPs-EC training and committed to lead community sessions. Our mixed-methods evaluation measured baseline and follow-up knowledge (10-point scale) and social and clinical empowerment (three Likert-scaled items) and assessed change in each construct with linear mixed-effects models and Generalized Estimating Equation models, respectively. The process evaluation examined fidelity, feasibility, and acceptability using qualitative data from coaching and national peer educator calls, with directed content analysis. RESULTS: Thirteen ambassadors completed training; 10 completed community sessions with 109 total attendees, 62 with complete data. Among community participants, CEPs-EC participation was associated with increased knowledge of 2.02 points (95% confidence interval [CI], 1.06-2.99; p = 0.0001). Social empowerment increased (odds ratio, 8.85; 95% CI, 1.90-41.20), reinforced by qualitative data. There was no change in clinical empowerment. Process data illustrated facilitators of success: session tailoring, leveraging social networks, mentorship, and group-level motivation. CONCLUSIONS: This is the first intervention addressing EC survival among Black women. Results demonstrate efficacy in improving EC knowledge and empowerment, providing the evidence base for a larger public health campaign.

Oncology provider and African-American breast cancer survivor perceptions of the emotional experience of transitioning to survivorship.

PURPOSE: To examine the emotional experience of African American breast cancer survivors (BCS), and the information exchange between providers and patients, during transitioning to post-treatment survivorship. RESEARCH APPROACH: We conducted a qualitative study using interviews and focus groups. PARTICIPANTS: We sought perspectives of oncology providers (n = 27) and African-American breast cancer survivors (BCS) (n = 45) who provided and received care in three counties in Washington State. METHODS: African-American community consultants conducted interviews and focus groups. Thematic coding and constant comparison were applied to identify emergent themes. FINDINGS: Participants reported emotional health information and support were needed but not consistently provided, resulting in a sense of survivor isolation. Systemic challenges limited providers' ability to deliver emotional support information. Survivors and providers expressed similar understandings of the emotional impact of transition, but each group highlighted different, yet complementary priorities to address emotional needs of African-American BCS. CONCLUSIONS: There is congruence between African-American BCS and oncology providers perceptions of the emotional experience of transitioning to post-treatment survivorship, but patients are not receiving adequate information and resources to help them adequately address their emotional needs. IMPLICATIONS FOR POLICY: Improved care continuity, team-based approaches, and partnerships between health systems and community organization partnerships may help patients and providers recognize and address emotional needs during the transition.

Assessment of Prediagnostic Experiences of Black Women With Endometrial Cancer in the United States.

Importance: Black women with endometrial cancer have a 90% higher mortality rate than white women with endometrial cancer. The advanced disease stage at which black women receive a diagnosis of endometrial cancer is a major factor in this disparity and is not explained by differences in health care access. Objective: To describe the prediagnostic experiences of symptoms and symptom disclosure among black women with endometrial cancer. Design, Setting, and Participants: This community-engaged qualitative study developed an interview guide to collect data during semistructured interviews among a sample of 15 black women with endometrial cancer in the United States. Interviews were conducted in person or via a secure conferencing platform. An exploratory and descriptive content analysis was performed using iterative rounds of inductive coding, case summaries, and coanalysis with community input to identify emergent themes. Data were collected from October 3, 2017, to April 15, 2019, and the descriptive content analysis was performed from October 11, 2017, to May 6, 2019. Main Outcomes and Measures: Beliefs, interpretations, and experiences of black women with endometrial cancer from symptom onset to diagnostic confirmation of cancer. Results: Participants included 15 women who self-identified as black or African American and ranged in age from 31 to 72 years. Eight participants lived in the Puget Sound region of Washington, 2 participants lived in California, and 1 participant each lived in Alabama, Michigan, Louisiana, Georgia, and New York. Twelve participants were receiving adjuvant therapy during the study, which indicated that they were either in a high-risk group and/or had advanced-stage disease. Thirteen participants had health insurance at the time of symptom onset, and all participants had elected to receive cancer treatment. Participants described knowledge gaps and silence about menopause, misinterpretation of vaginal bleeding, and responses by first-line health care practitioners that were not aligned with the risk of endometrial cancer among black women in the United States. Conclusions and Relevance: The responses of interviewed black women with endometrial cancer suggest that several mechanisms may be associated with a delay in care before diagnosis among this high-risk population and represent modifiable factors that may be useful in the development of targeted interventions to improve the rates of early diagnosis among black women with endometrial cancer.

Seeking Black Women's Voices in Endometrial Cancer Research via Deliberate Community Engagement.

BACKGROUND: Black women with endometrial cancer (EC) are diagnosed at advanced stages and have markedly high mortality rates compared with women of other races. EC disparities research lacks both qualitative work and engagement of Black women. We sought to describe developing a community-research partnership to examine EC among Black women. METHODS: We apply the Public Health Critical Race (PCHR) praxis to examine how race and racism shaped our partnership development. We used story telling, goal setting, and iterative collaboration tools to build our relationship and research study. RESULTS: Common racial and gender identities played an important role in establishing partnership. Active management of historical institutional discrimination, co-learning activities, and transparency were critical to successful collaboration and research development. CONCLUSIONS: Using community engagement and race-conscious approaches, we laid the groundwork for addressing a major knowledge gap in racial inequity in EC.

Community Empowerment Partners (CEPs): A Breast Health Education Program for African-American Women.

Peer educators have been shown to provide effective interventions in breast cancer screening. Few studies have compared the effects of peer education on breast cancer knowledge among peer educators and the community members who are subsequently reached through the peer education. Further, little is known as to whether those who received the education then go on to educate others in the community. The purpose of this study is to address those gaps. Using a pre- and post-test study design, we trained peer educators, provided the educators with resources to train community members, and assessed changes in knowledge. We sought to train ten educators and recommended each train ten community members in breast cancer knowledge and screening strategies. A total of 14 peer educators were trained, who subsequently trained a total of 121 community members, of whom 94 were African American women. Peer educators and community members, showed comparable increases in knowledge. Community members who were educated also increased intention to discuss breast cancer and breast cancer screening with their family, friends, and acquaintances. Our study suggests that it is feasible to train peer educators to increase knowledge among community members to the same level that they themselves experience when trained. Further, community members are interested in sharing information learned related to how much they learn from peer educators.

Ethnic differences in social support after initial receipt of an abnormal mammogram.

OBJECTIVES: We examine access to and type of social support after initial receipt of an abnormal mammogram across non-Latina White (NLW), African American, and Latina women. METHOD: This cross-sectional study used a mixed method design, with quantitative and qualitative measures. Women were recruited through 2 community advocates and 3 breast-health-related care organizations. RESULTS: With regard to access, African American women were less likely to access social support relative to NLW counterparts. Similar nonsignificant differences were found for Latinas. Women did not discuss results with family and friends to avoid burdening social networks and negative reactions. Networks' geographic constraints and medical mistrust influenced Latina and African American women's decisions to discuss results. With regard to type of social support, women reported emotional support across ethnicity. Latina and African American women reported more instrumental support, whereas NLW women reported more informational support in the context of their well-being. CONCLUSIONS: There are shared and culturally unique aspects of women's experiences with social support after initially receiving an abnormal mammogram. Latina and African American women may particularly benefit from informational support from health care professionals. Communitywide efforts to mitigate mistrust and encourage active communication about cancer may improve ethnic disparities in emotional well-being and diagnostic resolution during initial receipt of an abnormal mammogram. (PsycINFO Database Record

Medical advocacy among African-American women diagnosed with breast cancer: from recipient to resource.

PURPOSE: Medical advocacy at multiple levels (self, community/interpersonal, national/public health interest) may be helpful to address the disproportionate burden of breast cancer African-American women encounter. Little, however, is known about the interplay of medical advocacy at different levels. METHODS: We analyzed qualitative data from two studies focused on the psychosocial experiences of breast cancer among 38 African-American women living in Western Washington State. RESULTS: Emergent themes suggested that survivors received community/interpersonal advocacy from different members of social networks in the form of social support (appraisal, emotional, informational, instrumental). Survivors indicated that receiving this support was associated with greater self-advocacy in terms of their own care experiences, as well as greater community/interpersonal advocacy on their part as resources to other women diagnosed with breast cancer, their family, friends, and larger communities. CONCLUSION: Our findings suggest that community/interpersonal advocacy, including providing different types of support, may lead to improved self-advocacy as well as health-protective impacts for the networks in which survivors are embedded. Future quantitative research is warranted to support these findings and assess how this interplay is associated with improved outcomes among this marginalized and resilient population.

Medical Advocacy and Supportive Environments for African-Americans Following Abnormal Mammograms.

African-American women experience disproportionately adverse outcomes relative to non-Latina White women after an abnormal mammogram result. Research has suggested medical advocacy and staff support may improve outcomes among this population. The purpose of the study was to understand reasons African-American women believe medical advocacy to be important and examine if and how staff can encourage and be supportive of medical advocacy. A convenience-based sample of 30-74-year-old women who self-identified as African-American/Black/of African descent and who had received an abnormal mammogram result was recruited from community-based organizations, mobile mammography services, and the local department of health. This qualitative study included semi-structured interviews. Patients perceived medical advocacy to be particularly important for African-Americans, given mistrust and discrimination present in medical settings and their own familiarity with their bodies and symptoms. Respondents emphasized that staff can encourage medical advocacy through offering information in general in a clear, informative, and empathic style. Cultural competency interventions that train staff how to foster medical advocacy may be a strategy to improve racial disparities following an abnormal mammogram.