PURPOSE: Lesbian, gay, bisexual, transgender, and queer (LGBTQ+) individuals who receive primary care services at community health centers are often referred to external specialty care centers after cancer diagnosis, upon which primary care services are disrupted and may be discontinued because of gaps in communication between primary and oncologic care providers. This qualitative study evaluated barriers and facilitators to effective care coordination for LGBTQ+ patients with cancer and the utility of a novel cancer care coordination tool to mitigate identified barriers. MATERIALS AND METHODS: Semistructured interviews with LGBTQ+ cancer survivors, caregivers to LGBTQ+ persons, clinical team members who provide care to LGBTQ+ patients, and members of community-based organizations that work with LGBTQ+ patients were conducted. Interview analysis was a multistage process, wherein a constant comparison approach was used. Transcripts were reviewed and coded using Atlas.ti Cloud. RESULTS: A total of 26 individuals were interviewed: 10 patients, four caregivers, 10 clinical care team members, and two community organization representatives. Interview analysis yielded insight regarding (1) LGBTQ+ patient experiences engaging with primary and oncologic care at the clinic level and (2) perceptions of patient-provider and provider-provider communication and coordination. CONCLUSION: Interview findings indicate a need for further development of interventions aimed at improving care coordination, patient experience, and outcomes in the cancer care continuum for LGBTQ+ patients. Learning health systems, like the one studied, show great potential for contributing to the development of such interventions.

Background: Members of the lesbian, gay, bisexual, transgender, and queer (LGBTQ) community experience health disparities stemming from factors that include barriers to access, such as lack of LGBTQ-competent providers, discrimination, avoidance of care due to concerns about mistreatment, low income, unstable housing and lack of insurance. LGBTQ individuals have reduced rates of cancer screening which may lead to delayed diagnosis, have disproportionately higher rates of certain cancers, and are at elevated risk for many comorbidities, including mental health conditions, substance abuse, smoking-related diseases, cardiovascular disease and HIV. Community health clinics serve a critical role in the health of LGBTQ patients with cancer, however referral to institutionally-disconnected cancer specialists often disrupts care received at their primary care medical home, leaving a large gap in integrated primary care services. Thus, upon cancer diagnosis, LGBTQ patients become vulnerable to disruptions in support systems and fragmentation of cancer and primary care. The 4R model (Right information and Right Care for the Right Patient at the Right Time) is a novel approach our team developed to facilitate cancer planning, as a vehicle for patient enablement and team-based care delivery across the oncology and primary care continuum. The goal of our project is to identify barriers and facilitators to implementation of the 4R model as a component of care delivered to LGBTQ cancer survivors and later develop a protocol tailored to optimally meet the needs and preferences of LGBTQ cancer survivors, including overcoming barriers to optimal care that are presented by fragmentation of multi-level care at sites nationwide. Methods: In collaboration with one of the largest healthcare organizations caring primarily for an LGBTQ population, semi-structured interviews are being conducted with clinical care team members (N=10), patients (N=25), family/caregivers (N=10), and community organizations (N=5) in order to identify barriers and facilitators to implementation of the 4R model as a component of care delivered to LGBTQ cancer survivors. A Rapid Analysis Process, which is a qualitative analysis method recommended for circumstances in which a quick analysis is required to adopt changes to an ongoing process, will be utilized. Results: Interviews with clinical team members and stakeholder feedback with our FQHC partner site indicate a lack of research in and need to providing appropriate and effective cancer care coordination for the LGBTQ population. Interviews conducted with various stakeholder groups will reveal important considerations in (1) initiating cancer care, (2) providing appropriate supports and resources, (3) addressing comorbid conditions, and (4) providing follow up cancer monitoring, specifically for LGBTQ individuals. Citation Format: Nicolas Francone, Jonathan Alhalel, Will Dunne, Sankirtana Danner, Nihmotallahi Adebayo, Toni Madorsky, Cassandra Osei, Juan Rivera, Julia Trossman, Christine Weldon, Elizabeth Adetoro, Melissa Simon. Adapting a novel cancer care delivery model: identifying barriers unique to care coordination for LGBTQ cancer survivors [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2021; 2021 Apr 10-15 and May 17-21. Philadelphia (PA): AACR; Cancer Res 2021;81(13_Suppl):Abstract nr 2552.

Introduction: Community Scientist (CS) programs — often referred to as Citizen Scientist programs — that facilitate direct engagement between scientific researchers and community members have emerged as effective strategies for building community trust in scientists and better informing research design and dissemination to address true community needs. While population health research has increasingly incorporated community stakeholders into the research continuum, basic and translational sciences struggle to do the same and may contribute to cancer disparities. We designed and implemented a virtual CS program at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University (LCC). We report barriers, facilitators, and lessons learned. Methods: Translational scientists (TSs) were recruited from among LCC investigators, and CSs were identified for participation from among LCC community networks. We sought to recruit a CS cohort representing LCC's catchment area and a TS cohort whose research focuses on cancers most impacting LCC catchment. CS program interactions included monthly meetings between two CSs and one TS wherein the CS-TS triad discuss TS research in lay terms and work together to co-create educational infographics suitable for dissemination to the catchment and LCC scientists. Virtual attendance was tracked and meeting recordings retroactively reviewed to identify and create product development. Results: Six CSs and three TSs agreed to participate in the CS program. The CS cohort includes cancer survivors, patient advocates, community organization leaders, a nurse, and an educator, while the TS cohort includes breast, prostate, and lung cancer researchers. Currently, 11 of 18 triad meetings have been completed, with attendance averaging 97%. Barriers to program implementation have included technological difficulties, restrictions on in-person meeting, scheduling conflicts, time limitation, and language barriers, while facilitators have included small group meetings to promote comfortable group-member contribution, presence of a trained facilitator, articulation of achievable meeting goals and mission for product creation, and clear assignment of team roles. Conclusion: The COVID-19 pandemic has illuminated pre-existing needs for improved connectivity between communities impacted by cancer disparities and cancer researchers. By identifying current barriers and facilitators to successful virtual CS program implementation, our findings can be used to guide development and implementation of similar programs at LCC and other cancer centers that are aimed at mitigating cancer health disparities. Citation Format: Will Dunne, Kai Holder, Kevin Wamala, Magdalena Nava, Laura Tom, Catherine O'Brian, Sharon Post, Carmen Velasquez, Candace Henley, Rosemarie Rogers, Joanne Glenn, Jose Lopez, Jorge Girotti, Qi Cao, Yanis Boumber, Deyu Fang, Tarneka Manning, Adam B. Murphy, Melissa A. Simon. Connecting cancer research and communities: Assessing barriers and facilitators to the implementation of a community scientist program [abstract]. In: Proceedings of the AACR Virtual Conference: 14th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2021 Oct 6-8. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2022;31(1 Suppl):Abstract nr PO-037.

Background: The emergence of COVID-19 has particularly disrupted the lives of vulnerable patients needing comprehensive care, including cancer survivors. Moreover, patients receiving immunosuppressive treatment for cancer are at heightened infection risk and when infected, cancer survivors are at higher risk of serious infection. Further complicating matters, surgeries with curative intent have been significantly limited and systemic therapies for patients with cancer have been delayed to minimize patient and staff exposure to SARS-CoV-2. Preexisting gaps in cancer screening, treatment, and follow up as well as in the monitoring of primary care needs for patients at Federally Qualified Health Centers (FQHCs) have become more apparent due to the COVID-19 pandemic. The 4R model (Right information and Right Care for the Right Patient at the Right Time) is a novel approach our team developed to facilitate cancer planning, as a vehicle for patient enablement and team-based care delivery across the oncology and primary care continuum. The innovative cancer care delivery model has been successfully implemented and used in a pre-COVID setting. The COVID-19 pandemic provides an urgent need to study the ways in which preexisting cancer care delivery models have been disrupted and to adapt processes in order to provide quality care. Methods: Semi-structured interviews are being conducted with clinical care team members (N=10), patients (N=25), family/caregivers (N=10), and community organizations (N=5) in order to identify areas in which care for patients with cancer in a primary care setting have changed and how clinics are adapting to their patients' needs in the setting of the COVID-19 pandemic. A Rapid analysis process, which is a qualitative analysis method recommended for circumstances in which a quick analysis is required to adopt changes to an ongoing process, will be utilized. Results: Preliminary results from stakeholder feedback and clinical care team interviews have revealed changes in the FQHC's approach to cancer care coordination during the COVID-19 pandemic. In the spring/early summer of 2020, clinical team members were overburdened with clinical operation changes and the need to swiftly re-allocate resources towards COVID-19 testing. Non-emergent appointments transitioned to telehealth and care coordinators, the keystone of the 4R model, were working remotely and were met with significant obstacles in referring cancer survivors to specialty care and community resources. Conducting additional interviews will help elucidate the receptivity of the recently implemented 4R cancer care delivery model and inform how telehealth can be harnessed during this time to meet the complex needs and coordinating care for patients with cancer. Citation Format: Nicolas Francone, Will Dunne, Jonathan Alhalel, Sankirtana Danner, Nihmotallahi Adebayo, T Madorsky, Cassandra Osei, Juan Rivera, J Trossman, Christine Weldon, Elizabeth Adetoro, Melissa Simon. The emergence of the COVID-19 pandemic and its impact on a novel cancer care delivery model at Federally Qualified Health Centers [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2021; 2021 Apr 10-15 and May 17-21. Philadelphia (PA): AACR; Cancer Res 2021;81(13_Suppl):Abstract nr 719.

Background: Lesbian, gay, bisexual, transgender, and queer (LGBTQ) individuals experience health disparities at disproportionate rates which drive reduced cancer screenings and late-stage cancer diagnoses. These disparities are the result of barriers to care including a lack of LGBTQ-competent providers, lack of health insurance, unstable housing, and avoidance of care due to medical trauma and concerns about abuse and mistreatment. Community health centers are critical for providing primary care to LGBTQ+ patients with cancer. Unfortunately, once a patient is diagnosed with cancer and referred to specialty care outside the health center, primary care services are often disrupted or even discontinued as a result of gaps in communication between primary and oncological care providers. The © 4R Oncology Model (Right Information and Right Care for the Right Patient at the Right Time) is a novel, patient-centric care coordination tool developed to facilitate cancer planning and serve as a longitudinal primary care checklist for patients and their care team. Our project aims to assess the benefits and limitations of the 4R as a component of care delivered to LGBTQ cancer survivors. Methods: In collaboration with Howard Brown Health, we conducted semi-structured interviews with clinical care team members (N=10) to assess the benefits and limitations of the 4R implementation as a component of care delivered to LGBTQ cancer survivors. A Rapid analysis process, a method used when a quick analysis is required to adopt changes to ongoing processes, will be utilized. Results: Clinical care team members indicate that a lack of adequate research on solutions to the disruption of primary care services caused by cancer care for LGBTQ cancer patients is a significant barrier for this patient population. Team members agree that the 4R is a necessary intervention for addressing primary care gaps caused by inadequate care coordination. Conclusions: The 4R shows promise as a solution for initiating and sustaining more continuous communication between primary care and cancer care delivery for LGBTQ cancer survivors. Future interviews with patients, caregivers, and community organization members will further elucidate the barriers and facilitators to cancer care coordination for this population and how iterations of the 4R can improve access to care and outcomes. Citation Format: Nihmotallahi Adebayo, Will Dunne, Toni Madorsky, Sankirtana Danner, Juan Rivera, Elena Molina, Abbey Ekong, Elizabeth Adetoro, Cassandra Osei, Julia Trosman, Christine Weldon, Melissa Simon. LGBTQ cancer care: Assessing the benefits and limitations of a novel cancer care coordination tool [abstract]. In: Proceedings of the AACR Virtual Conference: 14th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2021 Oct 6-8. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2022;31(1 Suppl):Abstract nr PO-021.