A Learning Health System Approach to Cancer Survivorship Care Among LGBTQ+ Communities

Abstract

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.

Teams, Teaming, and Complex Systems in Cancer Care

“…21 Maintaining clear roles and responsibilities becomes more complex in MTSs, and many things can fall in the cracks between teams, even among the main and satellite locations of the same system. 20 Therefore, mechanisms such as the 4R Oncology models (Dunne, Liu) 22,23 prove beneficial.…”

Technology Supports to Cancer Care Teams: Promises and Pitfalls

“…Despite numerous calls for a more patient-centered cancer care delivery system, technologies to care delivery remain primarily in the hands of clinicians, with few meaningful patient contributions. More inclusive models of health care teams rightly include patients and families from diverse backgrounds (eg, Medicaid/Medicare and LGBTQ1 communities) [6][7][8] When considering implementation, clinicians have reported adverse experiences as practices introduce new technology. In a multisite study, clinicians reported suboptimal technology training that technology is additive-as opposed to substitutive-to workloads and that team members adopt technology unevenly, which collectively result in unreliable system processes and outcomes.…”

“…Despite numerous calls for a more patient-centered cancer care delivery system, technologies to care delivery remain primarily in the hands of clinicians, with few meaningful patient contributions. More inclusive models of health care teams rightly include patients and families from diverse backgrounds (eg, Medicaid/Medicare and LGBTQ+ communities) 6-8 as active and essential members of the cancer care team. Currently, patient and caregiver technology use to navigate care remains largely transactional.…”