RESUMO
BACKGROUND: Racial and ethnic disparities in COVID-19 infection and outcomes have been documented, but few studies have examined disparities in access to testing. METHODS: We conducted a mixed methods study of access to COVID-19 testing in the Somali immigrant community in King County, Washington, USA, early during the COVID-19 pandemic. In September 2020-February 2021, we conducted quantitative surveys in a convenience sample (n = 528) of individuals who had accessed PCR testing, recruited at King County testing sites near Somali population centers and through social media outreach in the Somali community. We compared self-identified Somali and non-Somali responses using Chi-square and Wilcoxon rank sum tests. We also conducted three Somali-language focus groups (n = 26) by video conference to explore Somali experiences with COVID-19 testing, and in-depth interviews with King County-based policymakers and healthcare workers (n = 13) recruited through the research team's professional network to represent key demographics and roles. Data were analyzed using qualitative rapid analysis to explore the county's COVID-19 testing landscape. RESULTS: Among 420 survey respondents who had received COVID-19 testing in the prior 90 days, 29% of 140 Somali vs. 11% of 280 non-Somali respondents tested because of symptoms (p = 0.001), with a trend for longer time from symptom onset to testing (a measure of testing access) among Somali respondents (median 3.0 vs. 2.0 days, p = 0.06). Focus groups revealed barriers to testing, including distrust, misinformation, stigma, language, lack of awareness, and transportation. Stakeholders responding from all sectors highlighted the importance of community partnership to improve access. CONCLUSION: Somali communities experience barriers to COVID-19 testing, as evidenced by the longer time from symptom onset to testing and corroborated by our qualitative findings. These barriers, both structural and community-derived, may be overcome through partnerships between government and community to support community-led, multilingual service delivery and racial representation among medical staff.
Assuntos
COVID-19 , Pandemias , Humanos , Somália , Teste para COVID-19 , Washington/epidemiologia , COVID-19/diagnóstico , COVID-19/epidemiologia , IdiomaRESUMO
BACKGROUND: Genetic test results will be increasingly made available electronically as more patient-facing tools are developed; however, little research has been done that collects data on patient preferences for content and design before creating results templates. OBJECTIVE: This study identifies patient preferences for the electronic return of genetic test results, including what considerations should be prioritized for content and design. METHODS: Following user-centered design methods, 59 interviews were conducted by using semistructured protocols. The interviews explored the content and design issues of patient portals that facilitated the return of test results to patients. We interviewed patients who received electronic results for specific types of genetics tests (pharmacogenetic tests, hereditary blood disorder tests, and tests for the risk of heritable cancers) or electronically received any type of genetic or nongenetic test results. RESULTS: In general, many of participants felt that there always needed to be some clinician involvement in electronic result returns and that electronic coversheets with simple summaries would be helpful for facilitating this. Coversheet summaries could accompany, but not replace, the more detailed report. Participants had specific suggestions for such results summaries, such as only reporting the information that was the most important for patients to understand, including next steps, and doing so by using clear language that is free of medical jargon. Electronic result returns should also include explicit encouragement for patients to contact health care providers about questions. Finally, many participants preferred to manage their care by using their smartphones, particularly in instances when they needed to access health information on the go. CONCLUSIONS: Participants recommended that a patient-friendly front section should accompany the more detailed report and made suggestions for organization, content, and wording. Many used their smartphones regularly to access test results; therefore, health systems and patient portal software vendors should accommodate smartphone app design and web portal design concomitantly when developing platforms for returning results.