ABSTRACT
Use of telerheumatology has increased significantly due to the circumstances surrounding the COVID-19 pandemic. This period of widespread adoption of telerheumatology represents an opportunity to improve access to care in the future by leveraging the newfound experience with and acceptance of telerheumatology achieved during this time. In order to optimize telerheumatology use and efficacy moving forward, the experience of patients and providers with the current state of technology must be considered. In this chapter, we summarize the available evidence describing patient and provider experience with telerheumatology across its lifespan. Patients generally have reported high satisfaction with their telerheumatology visits, citing increased convenience and improved access to care as the primary benefits. Noted barriers included apprehension and nervousness about the process, technologic barriers, and concerns regarding the quality of care. Physicians' opinions were more mixed but overall reported being satisfied with delivering care via telerheumatology. Perceived benefits included shorter waiting times, whereas barriers included impaired communication, inaccurate diagnosis, and possibility for delay in care. Patient and physician attitudes regarding telerheumatology have changed positively in the setting of the COVID-19 pandemic. Future studies should assess whether this positive attitude is temporary or whether it continues in future years. © The Author(s), under exclusive license to Springer Nature Switzerland AG 2022. All rights reserved.
ABSTRACT
INTRODUCTION Under-representation in health-related research is one of a multitude of factors that contribute to cancer disparities experienced by African American and Latinx communities. Barriers to research participation stem from historical social injustices, are multi-faceted and include factors specific to the research process, research team members and community experiences and expectations about research participation. Informed consent is a longitudinal process and represents an opportunity to address these barriers and potentially improve access to research by individuals from underrepresented groups. The purpose of the Strengthening Translational Research in Diverse Enrollment (STRIDE) study was to develop and test an integrated, literacy- and culturally-sensitive, multi-component intervention that addresses barriers to research participation during the informed consent process. METHODS A multi-pronged community engaged approach was used to inform the development the three components of the STRIDE intervention. At each of the three study sites, Community Investigators, local community members of diverse racial/ethnic backgrounds, contribute to intervention development, pilot testing and dissemination activities. Community engagement studios provided a semi-structured opportunity to solicit feedback from community experts in a facilitated group regarding the relevance, usability and understandability of the STRIDE intervention components. Additionally, component-specific approaches to obtaining community input were utilized. RESULTS The three components were developed and refined with community input. The STRIDE intervention includes: (1) an electronic consent (eConsent) framework within the REDCap software platform that incorporates tools designed to facilitate material comprehension and relevance, (2) a storytelling intervention in which prior research participants from diverse backgrounds share their experiences, and (3) a simulation-based training program for research assistants that emphasizes cultural competency and communication skills for assisting in the informed consent process. CONCLUSIONS The STRIDE project had produced an integrated set of interventions that are available to support researchers across the CTSA hubs and beyond in efforts to enhance diversity in clinical research. Early dissemination of STRIDE intervention components include utilization in national COVID-19 trials and research networks.