Community Advocacy Research Articles

Exploring ownership of change and health equity implications in neighborhood change processes: A community-led approach to enhancing just climate resilience in Everett, MA

Traditional planning processes have perpetuated the exclusion of historically marginalized communities, imposing vulnerability to climate (health) crises. We investigate how ownership of change fosters equitable climate resilience and community well-being through participatory action research. Our study highlights the detrimental effects of climate gentrification on community advocacy for climate security and health, negatively impacting well-being. We identify three key processes of ownership of change: ownership of social identity, development and decision-making processes, and knowledge. These approaches emphasize community-led solutions to counter climate health challenges and underscore the interdependence of social and environmental factors in mental health outcomes in climate-stressed communities.

Editorial: The case for more action and more research into healthcare provision and health inequalities for people with intellectual disabilities

Accessible SummariesAge, Sex, and Constitutional Factors Whittle et al. identify how sex impacts mental health service use for women with intellectual disability. Sheerin et al. highlight how age‐specific needs are unmet due to service gaps. Burke et al. identify how age‐related healthcare risks for bone health are different for people with intellectual disability.Living and Working Conditions van den Bemd et al. reported the recording of management of long‐term conditions for patients with intellectual disabilities in long‐term care appears suboptimal. Skoss et al. report on the infrastructure of group home settings in Australia and how after COVID‐19 people living in these settings receive fewer healthcare services.Individual Lifestyle Factors Lunsky et al. explored the use of a ‘check‐in tool’ to support people with intellectual disability proactively.Community and Social Networks Donaldson et al. and Karas et al. highlight systemic issues with eyecare and examine the impact of peer‐to‐peer support and community advocacy on improving access to eye care. Schormans et al. examine the lack of social and community support for homeless youth with intellectual disability. Sykes et al. highlight reasonable adjustments and influence of community and familial attitudes in influencing breast and cervical cancer screening access. Earle et al. detail how broader societal and cultural norms affect menstrual health support. Heslop and Lauer found limited evidence about preventing specific avoidable causes of death in people with intellectual disability and outline the need for ‘whole population’ policy changes. Iffland et al. found that lung infections, choking, flu and heart problems were much more likely to be a contributing cause of deaths for people with intellectual disability. Hatton et al. explore the impact of COVID‐19 on access to health services and highlight severe disruptions during the pandemic which persisted and worsened postpandemic. Beeken et al. detail how stakeholder engagement in research and policymaking can improve health and address health inequalities.

Rural physician-community engagement: Building, supporting and maintaining resilient health care strategies in three rural Canadian communities.

To explore rural physician-community engagement through three case studies in order to understand the role that these relationships can play in increasing community-level resilience to climate change and ecosystem disruption. Qualitative secondary case study analysis. Three Canadian rural communities (BC n = 2, Ontario n = 1). Rural family physicians and community members. Twenty-eight semi-structured virtual interviews, conducted between November 2021 and February 2022, were included. Communities were selected from the larger data set based on data availability, level of physician engagement and demographic factors. Thematic analysis was completed in NVivo using deductive coding. The presented qualitative case studies shed light on the strategies employed by physicians to establish and foster relationships within rural communities during challenging circumstances. In Community A, the implementation of a Primary Care Society (PCS) not only addressed physician shortages but also facilitated the development of strong continuity of care through proactive recruitment efforts. Community B showcased the adoption of an 'intentional physician community' model, emphasising collaboration and community consultation, resulting in effective communication of public health directives and innovative interdisciplinary action during the COVID-19 pandemic. In Community C, engaged physicians and community advocates are aligned to contribute to the long-term sustainability of the rural community, particularly in the context of food security and climate change vulnerabilities. These findings underscore the significance of trust building, transparent communication and collaboration in addressing health care challenges in rural areas and emphasise the need to recognise and support physicians as agents of change.

NURS-05. CATALYZING AND INFORMING THE DEVELOPMENT OF MORE COMPREHENSIVE AND ACCESSIBLE PROGRAMS FOR CAREGIVERS OF YOUNG ADULT SURVIVORS OF CHILDHOOD BRAIN TUMORS

Abstract BACKGROUND The chronic and intensive care needs of young adult survivors of childhood brain tumors are most often addressed by their maternal caregivers with limited, specific psychosocial or other programs to reduce caregiving demands and enhance their family management. Using a social ecological perspective, the purpose of this study was to catalyze and inform the development of more comprehensive and accessible programs for caregivers of young adult survivors of childhood brain tumors. METHODS Semi-structured interviews were conducted with 21 maternal caregivers, 6 post baccalaureate students/professional coaches for a problem-solving intervention for maternal caregivers, and 16 neuro-oncology clinical experts using interview guides tailored to their roles and constructed based on the Consolidated Framework for Implementation Science. Qualitative. Interview data were analyzed using content analysis. RESULTS Barriers included: need for internet connected devices (microsystem level); lack of care matched to their identified needs (mesosystem); poor tracking of long-term survivors and lack of survivorship psychosocial services (macrosystem); and lack of supportive health care policies and funding mechanisms for individuals and organizations (exosystem). Facilitators included: web-based platform accessible to the individuals and population (microsystem); widespread acknowledgement regarding gaps in survivorship psychosocial care (mesosystem); partnerships with survivors of childhood brain tumors, caregivers, and organizations that treat them (macrosystem); and dissemination among childhood brain tumor treatment/survivorship programs, healthcare systems, and community organization and endorsement from them (exosystem). CONCLUSIONS Multilevel approaches that address barriers and facilitators for improving health equity for maternal caregivers of young adult survivors of childhood brain tumors incorporate the design and dissemination of accessible, web-based programs designed in partnership with survivors, caregivers, and organizations to build care matched to need, as well as organizational, political, and community advocacy.

Barriers and facilitators to screen for and address social needs in primary care practices in Maryland: a qualitative study.

Social needs screening can help modify care delivery to meet patient needs and address non-medical barriers to optimal health. However, there is a need to understand how factors that exist at multiple levels of the healthcare ecosystem influence the collection of these data in primary care settings. We conducted 20 semi-structured interviews involving healthcare providers and primary care clinic staff who represented 16 primary care practices. Interviews focused on barriers and facilitators to awareness of and assistance for patients' social needs in primary care settings in Maryland. The interviews were coded to abstract themes highlighting barriers and facilitators to conducting social needs screening. The themes were organized through an inductive approach using the socio-ecological model delineating individual-, clinic-, and system-level barriers and facilitators to identifying and addressing patients' social needs. We identified several individual barriers to awareness, including patient stigma about verbalizing social needs, provider frustration at eliciting needs they were unable to address, and provider unfamiliarity with community-based resources to address social needs. Clinic-level barriers to awareness included limited appointment times and connecting patients to appropriate community-based organizations. System-level barriers to awareness included navigating documentation challenges on the electronic health record. Overcoming barriers to effective screening for social needs in primary care requires not only practice- and provider-level process change but also an alignment of community resources and advocacy of policies to redistribute community assets to address social needs.

Using a smart city framework to advance justice: applying an equity lens to compare air quality in neighbourhoods of different socioeconomic profiles

ABSTRACT The smart city framework, while initially received with enthusiasm, has been critiqued for reproducing urban inequalities rather than reducing marginalisation. This paper demonstrates how application of an equity lens within a smart city framework can advance justice by addressing air quality inequities in a diverse coastal city. We conducted a pilot study in which integrated air quality sensors are deployed for criteria pollutants in two contrasting neighbourhoods, to demonstrate that the smart city framework can be used with an equity lens for baseline data collection and analysis to support communities of colour in advocating on their own behalf. Communities of colour are disproportionately impacted by poor air quality, pollution exposure, and health burdens. Research shows that marginalised communities often lack air quality sensors installed by traditional regulatory measures. Thus, smart city technology using targeted deployment of air quality sensors can aid neighbourhood-level sampling, and data can be leveraged by marginalised communities for policy development to address inequities in pollution exposure and health impacts. In this study, air quality sensors were deployed and integrated with a web-based interactive platform called Community Resiliency Information Systems (CRIS) to compare a white, affluent neighbourhood with a marginalised, predominantly Black neighbourhood in Saint Petersburg, Florida. Data collected indicates significant differences in concentrations of air pollutants in the study neighbourhoods; exposure levels are higher in the poor, minority-dominated neighbourhood. CRIS facilitates two-way communication between residents and policy makers, demonstrating that careful application of technology can produce data to support community advocacy and address environmental inequalities. Key policy highlights The smart city framework integrated with air quality sensors has the potential to advance justice when applied through an equity lens. This pilot project demonstrates air quality inequities at neighbourhood level comparisons (affluent vs marginalised) in a coastal city – exposure levels are higher in the poor, minority-dominated neighbourhood. The CRIS platform facilitates two-way communication between residents and policy makers, demonstrating that careful application of technology can produce data to support community advocacy and address environmental inequalities.

Unveiling Pakistan's transport problems: a call to safeguard public health.

Public transportation is an important mode of transportation in developing countries like Pakistan since it is accessible and convenient. But there are also serious health hazards associated with it, especially when it comes to the transmission of infectious diseases including COVID-19, TB, and Haemophilus influenzae. Worldwide transportation systems are vulnerable, as the COVID-19 pandemic has shown, underscoring the necessity for study and mitigating measures. The danger of disease transmission is increased in Pakistan by crowded metropolitan areas, inadequate sanitation, and low health awareness. In addition, congested public transportation and inadequate ventilation lead to reduced air quality and elevated stress levels among commuters. Comprehensive actions are needed to address these health hazards, such as promoting physical distance, improving cleanliness, enforcing traffic safety laws, and implementing policy changes that support sustainable transportation. Community involvement and advocacy are critical in campaigning for safer and more sustainable transportation networks. Pakistan can enhance public health outcomes and reduce the health hazards linked to public transportation by giving priority to these measures.

"Let him die. He caused it": A qualitative study on cancer stigma in Tanzania.

Cancer stigma presents a critical barrier to care seeking, contributing to delayed presentation and poor cancer outcomes worldwide. The burden of cancer in Tanzania is on the rise, with cancer being the third-leading cause of death in the country. Despite rising incidence and poor outcomes of cancer, cancer-related stigma interventions have received low prioritization. There is a need for sound research that focuses on understanding attitudes driving stigma, its impact on care-seeking and treatment adherence, and intervention models to reduce stigma. We used a cross-sectional qualitative study design. We administered three open-ended qualitative questions to 140 adults newly diagnosed with cancer in Moshi, Tanzania. The questions explored common attitudes toward people with cancer, the perceived impact of cancer-related stigma on care engagement, and ideas for reducing cancer stigma. Patients were recruited during routine appointments at the Cancer Center at Kilimanjaro Christian Medical Center. Data were analyzed using a team-based, applied thematic approach and NVivo 12 software. All participants described stigma as a significant challenge for treatment and receiving support from their social networks. Perceptions of financial burden, misconceptions about cancer, such as the belief that it is contagious, and fear of death, were common attitudes driving cancer stigma. Most participants feared that symptoms would prevent them from being able to work and that the cost of cancer care would drive away loved ones. Stigma was not a ubiquitous response, as some participants reported increased care and social support from family members after a cancer diagnosis. Experiences of stigma contributed to feelings of shame, fear of burdening the family, reduced resources to access treatment, and disengagement from care. Common substitutes to medical therapies included religious interventions and traditional medicine, perceived as less expensive and less stigmatizing. Many participants felt they would benefit from improved financial support, professional counseling, and education for families and communities to reduce stigmatizing attitudes and enhance social support. There is a need for intervention studies focused on improving cancer literacy, community advocacy to reduce cancer stigma, and increasing emotional and practical support for people with cancer and their families. There is also a clear need for policy efforts to make cancer care more affordable and accessible to reduce the financial burden on patients and families.

The Institutional Hearing Program and the Incarceration-to-Deportation Pipeline

Through our study of the Institutional Hearing Program (IHP), we examine how immigration courts within prisons enforce immigration law over individuals serving criminal sentences. Drawing from interviews with legal services providers, community advocates, and impacted immigrants in New York City, we examine due process, inequality, and legal strategies in the context of the IHP. Findings demonstrate the disproportionate punishment of Black and Brown incarcerated immigrants, as well as restricted access to information, distant placement of IHP prisons, and scarce funding for representing incarcerated individuals in immigration proceedings, all of which create challenges for legal advocates' chances of success. We argue that sanctuary provisions in NYC exclude certain migrants by marking them with the stigma of criminal records in over-surveilled neighborhoods and physically exporting them outside city borders to state prisons, where specific policies toward their expedited deportation (such as the IHP) take place. The IHP is a key site on a pipeline from incarceration to deportation that must be drastically limited, or ultimately eradicated, to ensure justice for criminalized immigrants.

Leveraging Patient Engagement Through Collaboration for Improved Global Health Outcomes in Sarcoma.

In the dynamic landscape of oncology, collaborative efforts between the medical community and patient advocacy groups are pivotal in shaping standards of care and advancing research. Nowhere is this collaboration more evident than in sarcoma, a group of rare cancers posing unique challenges to diagnosis, management, and treatment, which profoundly affect patient outcomes. Here, we explore the vital role of patient-centric collaboration in improving global health outcomes in sarcoma, emphasizing the transformative power of collective action and shared expertise. Challenges in sarcoma care, including diagnostic complexities, disparities in access to care, and genomic tumor heterogeneity, underscore the urgent need for collaborative solutions. Initiatives like the Sarcoma European and Latin American Network (SELNET) and The Life Raft Group (LRG) exemplify successful models of collaborative research and patient advocacy, driving advancements in diagnosis, treatment, and disease understanding. Stakeholders across disciplines are uniting to improve sarcoma care and outcomes through the development of clinical practice guidelines, continuous medical education, patient registries, virtual tumor boards, and consortium-driven research endeavors, all of which foster the growth of global collaborative groups. The success of these collaborative efforts serves as a model for other rare diseases, highlighting the potential of collective action to drive progress and innovation in health care.

MAKNA PASTORAL KONSELING DALAM ADAT PEMINANGAN SANGIHE: DALENG’U WERA

Pastoral Counseling is a reciprocal process that occurs between the counselor and the client to achieve a common goal, namely what the counselee himself hopes, namely to get out of the problem. Pastoral counseling also in ministry cannot be limited by time, where and whenever it can be done. The meaning of pastoral counseling in the Sangihe community's pemingan tradition is: Daleng'u Wera is one of the pastoral services that can be carried out where there are pastoral functions that can be applied, namely: guiding, supporting, empowering and preventive or prevention functions. So that pastoral counseling and customs become one of the new things that can influence each other and also complement each other in their services. In this case, pastoral counseling can play an important role in the Dalengu Wera customs to facilitate open dialogue and communication, provide understanding, provide spiritual support and emotional so that both families and couples can get the right decision before entering the wedding procession. This research uses a descriptive qualitative research method to see the meaning of pastoral counseling in the Daleng'u Wera betrothal tradition.

Menopause depression: Under recognised and poorly treated.

Menopause is a biological process experienced by all people assigned female at birth. A significant number of women experience mental ill health related to the major brain gonadal hormone shifts that occur in their midlife. There is poor understanding and management of the complex mental ill health issues, with the biological brain hormone changes receiving little formal attention. The current treatment advice is to manage this special type of mental ill health in the same way that all mental ill health is managed. This leads to poor outcomes for women and their families. Many women leave the workforce earlier than expected due to menopause-related depression and anxiety, with subsequent loss of salary and superannuation. Others describe being unable to adequately parent or maintain meaningful relationships - all ending in a poor quality of life. We are a large and diverse group of national and international clinicians, lived experience and social community advocates, all working together to innovate the current approaches available for women with menopausal mental ill health. Above all, true innovation is only possible when the woman with lived experience of menopause is front and centre of this debate.

Human Rights Violation in India’s Hijab Ban and the Need for Community Advocacy

The Karnataka state government banned the hijab in schools on February 5, 2022, and several women petitioned the Karnataka High Court to overturn it. A panel of three judges concluded on March 15, 2022, that the hijab is not an important Islamic practice. By punishing females for their wardrobe choices, the court stressed conformity above girls' access to education. The hijab prohibition is part of a pattern of discrimination against Muslim women that violates their human rights. With the rise of authoritarianism, a new form of feminism is emerging in which Muslim girls in India are challenging the authorities and resisting asserting their identity and preferences. Previous research has described human rights violations experienced by Indian female students regarding court decisions. Therefore, the purpose of the research is to investigate the human rights violations that have been disclosed as a result of India's hijab ban which employs normative juridical research methodologies. The method refers to a legal research approach that involves the examination of written law from multiple perspectives. The High Court's verdict worsens Muslim girls and women's education-related harassment, trauma, and prejudice. Muslim students removing their hijabs and burqas before entering schools is a difficult topic that requires neutrality. The verdict would affect the Indian Constitution and the Muslim population, especially hijab-wearing women. United Nations (UN) Women has backed all initiatives of India's Ministry of Women and Child Development that seek to advocate for those affected by the hijab ban to promote gender equality and prevent discrimination against women.

Nothing about us without us: Advocacy and engagement in genetic medicine.

The development of new genetic medicines to treat sickle cell disease highlights the need for greater collaboration between researchers and people with lived experiences. Drawing on the adage "Nothing about us, without us," we call for increased investments in community advocacy and engagement.

Factors Driving Exclusion and Discrimination of Elmolo in Kenya: A Case of El Molo in Turkana County

The indigenous peoples in Kenya face a huge hurdle in protecting their fundamental rights and freedoms due to lack recognition as distinct groups with specific needs, cultures, and ways of life. This study sought to address to identify and map the El-Molo community in Turkana County, documenting varying levels of marginalization among different demographics and understanding the structure through which the community coordinates and advocates for their rights and development. The study focused on 1,104 El Molo residents in Kalokol, Longech, and Kapua, and utilized a descriptive research design. The researcher employed key informant interviews as well as Focus Group Discussions to collect primary data. To ensure the reliability of the findings, a triangulation of methods was utilized, including interviews with local chiefs, ministry officials, and representatives of faith-based organizations in Central Turkana. During public Baraza and FGD, a checklist was used to guide the discussions. The El-Molo community, the smallest ethnic group in Kenya, is at risk of losing their distinct identity through intermarriage and the adoption of Western practices from neighbouring tribes. Without intervention, their traditional food, clothing, housing, and cultural practices will disappear. Therefore, it is crucial to expose the community to methods of preserving their heritage, including material culture, music, and dance

Towards Sustainable Practices of Diversity and Inclusion of SOGIESC in Japanese Language Education & Japanese Studies

ABSTRACT Research into Japanese language education and the intersections of gender and sexuality has demonstrated the importance of critiquing heteronormative biases in teaching materials and resources. We propose that collaborative approaches which decentre regimental heteronormative understandings of the Japanese language and which facilitate inclusivity and affirmation of sexual orientation, gender identity, gender expression, and sex characteristics (SOGIESC) are crucial to sustainable practices in Japanese language education at all levels. Adopting a critical reflexive stance, we first trace the community advocacy which has resulted in changes to representations of sexual identities in Japanese dictionaries. We next critically examine Japanese language education materials which are used across a diversity of locales before offering some practical ways in which small changes can be made to ensure greater inclusion and affirmation of SOGIESC in local learning environments. Further, we discuss the importance of developing metalinguistic awareness in relation to gendered speech styles and language ideologies. We argue that collaboration and co-construction are fundamental to sustainable practices which learn from histories of advocacy and research, are responsive to shifts in Japanese society and culture, and adaptable to a diversity of learning environments.

Voice, access, and ownership: enabling environments for nutrition advocacy in India and Nigeria

What constitutes an enabling environment for nutrition advocacy in low- and middle-income countries? While a sizeable body of scholarship considers the enabling environment for nutrition policy, we focus specifically on the necessary conditions for advocacy. We argue that three factors—voice, access, and ownership—provide a useful lens into the advocacy enabling environment. These are operationalized, respectively, as the space to articulate and frame policy positions, entry points to interact with policy decision makers, and the existence of committed decision makers rather than those responding to pressures from external actors. These three factors are explored vis-à-vis a comparative analysis of two federal democracies—India and Nigeria—that each have vibrant advocacy communities confronting persistent malnutrition. Drawing on more than 100 structured interviews with nutrition advocates, government actors, donors, and researchers in the two countries, we highlight the ways in which voice, access, and ownership interactively shape advocacy efforts. In doing so, we find that Nigeria has a less ideological approach to certain nutrition issues than in India but also perceived to be more beholden to external actors in defining its nutrition actions. Recent restrictions on freedom of speech and association shrunk the civic space in India but these were less problematic in Nigeria. In both countries, the multi-tiered, multi-party system offers many different points of access into the policy arena, with sometimes negative implications for coordination. Overall, the paper contributes more broadly to the literature on enabling environments by highlighting potential indicators to guide nutrition advocates in other settings.

Abstract PO3-28-01: More Than a Diagnosis: An Untold Story of Quality of Life

Abstract Background Advocates for Collaborative Education, a global coalition of patient, community, research, and policy advocates, initiated an anonymous, online survey to assess Quality of Life (QoL) impacts of cancer diagnosis and treatment to inform research, clinical care, and the broader cancer community. Identifying what matters most to individuals can potentially guide improvements in supportive care to effectively address QoL impacts. Methods A six-section, 93 question survey was co-created by patients, survivors, and advocates. Co-creation was instrumental in determining categories, specific questions, and measurement scales used to assess severity and impact of QoL challenges. Beyond demographic, treatment, and cancer diagnosis data, co-creation participants identified seventeen (17) treatment-related side effects. Survey questions asked about these side effects, their perceived severity, how well informed they felt about possibilities of experiencing these side effects, supportive care access, side effects of supportive care therapies, and personal preferences for receiving cancer-related information. Recruitment efforts for this online survey were conducted through advocacy groups and social media platforms. Results Across a wide range of demographic subsets, including age, race, stage of cancer, and treatment modalities, 334 respondents with a history of breast cancer reported a decline in QoL scores pre cancer vs post cancer according to the co-created measurement tool. Physical and emotional well-being emerged as top priorities for most respondents, 47.9% and 27.5% respectively. Of 17 listed side effects, respondents cited fatigue (49%), muscle/joint pain (36%), and emotional distress (35%) as primary concerns, with sexual dysfunction and cognitive impairment ranking prominently. Forty-six percent reported severe (frequent & highly disruptive) to very severe (constant & severely impacting quality of life) emotional distress, but only 55% of those felt informed or well informed about the possibility of emotional distress. Among respondents, only 41% received a plan to address emotional distress. Many felt unprepared for physical side effects as well. While 54% of individuals experienced diarrhea or fecal incontinence as a treatment side effect, 22% of affected individuals did not feel informed about the possibility of such side effects. Survey findings also highlight consequences of treatments to manage side effects. For example, 37% of respondents were prescribed treatment to address diarrhea and 100% of these patients reported additional side effects stemming from this supportive care including nausea, constipation, and fatigue. Detailed results for all categories as well as stratification by subsets of age, race, metastatic vs. early stage, treatment type, and others will be available for presentation and publication. Conclusion This study sheds light on an underexplored area of cancer research. Management of treatment side effects is integral to supportive care, yet supportive medications can introduce a cascade of their own side effects, exacerbating the overall burden on patients. Information and education are critical to bridge the gap. The collaboration with patients and survivors in developing this survey represents a pivotal step in determining areas that demand attention for improving QoL and offers valuable insights aimed at enhancing the well-being of individuals affected by cancer and additional research will pursue collaborative solutions. Demographic and High Level QoL Responses from MTAD (Breast) Detailed data on perceived severity, impact to QoL, perceived preparation for, and relevant supportive care is available for each side effect Citation Format: Stacey Tinianov, Kelly Shanahan, Catherine Thomsen, Ginny Mason, Laura Carfang, Joanne Mika Hayashi, Laurie Hutcheson. More Than a Diagnosis: An Untold Story of Quality of Life [abstract]. In: Proceedings of the 2023 San Antonio Breast Cancer Symposium; 2023 Dec 5-9; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2024;84(9 Suppl):Abstract nr PO3-28-01.

Abstract PO2-09-10: Addressing Breast Cancer Disparities: Co-Creating Digital Interventions with Patients, Navigators & the Community to Address Social Determinants of Health in the Memphis Statistical Area

Abstract Background: The Memphis Statistical Area, which covers counties in Arkansas, Mississippi, and Tennessee, leads in disparities in mortality rates between Black breast cancer patients compared to White counterparts1. Urban Health Education & Support Services (UHESS), in partnership with RabbleHealth, and West Cancer Center & Research Institute (WCCRI), initiated a solutions-oriented, community-based scalable initiative in January 2023 to measurably address social determinants of health (SDOH), which often drive cancer inequities that disproportionately impact individuals of marginalized communities. By leveraging a community-driven, co-creation sustainable approach, the team sought to measurably improve breast cancer equality utilizing digital enablement and the knowledge of local breast cancer survivors and leading healthcare professionals, including navigators. Methods: A four-phase approach was leveraged to 1. improve access to locally available breast cancer services in communities that are traditionally underserved and 2. measure the public health impact against root causes of breast inequities (i.e., care pathway metrics), and 3. create a repeatable, scalable model to expand to other underserved communities. In Phase 1, UHESS leveraged the Mid-South Regional Breast Cancer Coalition, which convenes ten local breast cancer patient advocacy organizations, to recruit focus groups for co-creation throughout all phases of the initiative. The working group consisted of eight representatives from a variety of Memphis-based cancer organizations, faith-based organizations, navigator programs, and WCCRI. This phase centered around establishing trust with the local patient advocacy community. In Phase 2, an initial patient survey was circulated to identify key resources that reduce health inequities and barriers to access. Human-centered design facilitators supported a series of Listen & Learn workshops with patients to convey root causes of gaps in access to relevant services and with navigators to understand professional needs of navigators and scale the ability improve patient access to resources. To co-create a solution, facilitated patient and navigator workshops were held in Phase 3 to gather patient-centric user experience and design enhancements for a digital patient engagement app. These requirements as well as navigator-defined metrics needs were digitized and organized by SDoH. Phase 4, the Deploy & Measure phase, will begin in September of 2023 and the community-based deployment model focuses on three drivers including: (a) embedding within navigator workflow, (b) activating faith-based organizations, and (c) leveraging societies. Health equity performance data will be analyzed weekly to rapidly target those ZIP codes with the greatest need. Results: Co-design efforts included over 50 members of the Greater Memphis community and final initiative results will be presented at the meeting. Planning for further research regarding community impact and model scalability is already underway. Conclusion: By leveraging a community-driven, co-creation sustainable approach, this model enables a better way to measurably improve breast cancer equality utilizing digital enablement and the knowledge of local breast cancer survivors and leading healthcare professionals, including navigators. Initiative Funding Acknowledgements: Gilead Life Sciences & Blue Cross Blue Shield of Tennessee Foundation 1. Vidal G, Bursac Z, Miranda-Carboni G, White-Means S, Starlard-Davenport A. Racial disparities in survival outcomes by breast tumor subtype among African American women in Memphis, Tennessee. Cancer Med. 2017 Jul;6(7):1776-1786. doi: 10.1002/cam4.1117. Epub 2017 Jun 14. PMID: 28612435; PMCID: PMC5504313. Citation Format: Gregory Vidal, Stacey Tinianov, Aubrey Kelly, Andrea Curry, Carla Baker. Addressing Breast Cancer Disparities: Co-Creating Digital Interventions with Patients, Navigators & the Community to Address Social Determinants of Health in the Memphis Statistical Area [abstract]. In: Proceedings of the 2023 San Antonio Breast Cancer Symposium; 2023 Dec 5-9; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2024;84(9 Suppl):Abstract nr PO2-09-10.

Abstract PO1-01-01: ECOG-ACRIN EA1211: Interim FDG-PET/CT for predicting response of HER2-positive breast cancer to neoadjuvant therapy (DIRECT Trial)

Abstract Background: Strategies to optimize treatment decision-making in early stage HER2-positive breast cancer are a current priority for the oncology and patient advocacy community. Recent studies suggest that early metabolic changes on FDG-PET/CT (imaging biomarker) predict response to HER2-directed therapy. The TBCRC026 trial showed that participants not obtaining a 40% reduction in SULmax by cycle 1 day 15 (C1D15) following neoadjuvant trastuzumab/pertuzumab (HP) were unlikely to obtain pCR [negative predictive value (NPV) 91%]. The ECOG-ACRIN EA1211/DIRECT trial aims to validate FDG-PET/CT as a neoadjuvant interim (niFDG-PET/CT) imaging integral biomarker in patients treated with standard HER2-directed regimens (NCT05710328). Design: EA1211/DIRECT is a multicenter, single-arm, primary imaging phase 2 study enrolling patients with stage II/III HER2-positive breast cancer. Patients undergo standard skull base-thigh FDG-PET/CT at baseline and C1D15 and receive standard of care pertuzumab-based neoadjuvant therapy followed by surgery. Eligibility: Age ≥18 years, ECOG performance status 0-2, stage IIa-IIIc, untreated HER2-positive breast cancer with known hormone receptor status, suitable to undergo FDG-PET/CT imaging and neoadjuvant therapy. Methods: ΔSULmaxD15 will be computed as: (D15 SULmax – baseline SULmax)/baseline SULmax. The primary objective is to estimate the NPV of niFDG-PET/CT for pCR using ΔSULmaxD15 of the primary breast cancer at a threshold of 40%, in patients treated with neoadjuvant HER2-directed therapy. NPV is defined as the probability that pCR will not be achieved by participants with ΔSULmaxD15 < 40%. Secondary endpoints include evaluating the sensitivity, specificity, and positive predictive value of ΔSULmaxD15 of the primary breast cancer at a threshold of 40% and the ability of the niFDG-PET/CT biomarker to predict 3-year event free survival (EFS). Sample Size: We expect that 50% of patients will not reach the ΔSULmax threshold of 40% and a pCR rate of 40-60%. The proposed sample size is 210 participants, adjusted to 235 to account for missing data in 10% of cases. Computation of exact, two-sided 95% confidence intervals (CI) for NPV determined the lower limit of the CI is at least 80% when the true NPV is at least 88%. The lower limit is 84% when the true NPV has the value of 91%, which was estimated in the TBCRC026 study. Current Status: EA1211/DIRECT was activated in May 2023 across the NCI National Clinical Trials Network (NCTN), and accrual is anticipated to complete in March 2025. Those interested in the clinical trial can email ea1211team@ecog-acrin.org. Conclusion: The EA1211/DIRECT trial is the first step in implementing a Response-Guided Treatment Strategy by validating the ΔSULmax threshold of 40% as the optimum cut point across standard of care HER2-directed neoadjuvant regimens. If EA1211/DIRECT meets its objectives, the results will be used to design clinical utility studies, and thus hoping to change practice. Citation Format: Heather Jacene, Constantine Gatsonis, Roisin Connolly, Brian Burnette, Erica Stringer-Reasor, Maeve Hennessy, Justin Romanoff, Alexander Taurone, Ciara O'Sullivan, H. T. Carisa Le-Petross, Courtney Lawhn Heath, Vered Stearns, Amy Fowler, Shou-Ching Tang, Karla A Sepulveda, Angela DeMichele, David Mankoff, Antonio Wolff. ECOG-ACRIN EA1211: Interim FDG-PET/CT for predicting response of HER2-positive breast cancer to neoadjuvant therapy (DIRECT Trial) [abstract]. In: Proceedings of the 2023 San Antonio Breast Cancer Symposium; 2023 Dec 5-9; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2024;84(9 Suppl):Abstract nr PO1-01-01.