The Impact of COVID-19 on Patient, Family Member, and Stakeholder Research Engagement: Insights from the PREPARE NOW Study.

BACKGROUND: Little is known about the impact of COVID-19 on patient, family member, and stakeholder patient-centered outcomes research engagement. OBJECTIVE: To answer the research questions: (1) What is the impact of COVID-19 on the lives of patients with kidney disease and their families? (2) What is the impact of COVID-19 on research engagement for patient and family member research team members who are themselves at very high risk for poor COVID-19 outcomes? and (3) How can we help patients, family members, and stakeholder team members engage in research during COVID-19? DESIGN: We conducted virtual semi-structured interviews with patient and family member co-investigators and kidney disease stakeholders from the PREPARE NOW study during November 2020. The interview guide included questions about participants' experiences with the impact of COVID-19 on research engagement. PARTICIPANTS: Seven patient and family member co-investigators and eight kidney disease stakeholders involved in a kidney disease patient-centered outcomes research project participated in the interviews, data analysis, and writing this manuscript. APPROACH: We used a content analysis approach and identified the main themes using an inductive process. KEY RESULTS: Respondents reported three main ways that COVID-19 has impacted their lives: emotional impact, changing behaviors, and changes in health care delivery. The majority of respondents reported no negative impact of COVID-19 on their ability to engage in this research project. Suggestions for patient-centered outcomes research during COVID-19 and other emergencies include virtual research activities; active engagement; and promoting trust, honesty, transparency, and authenticity. CONCLUSIONS: COVID-19 has had a significant negative impact on patient, family member, and stakeholder research team members; however, this has not resulted in less research engagement. TRIAL REGISTRATION: Clinicaltrials.gov NCT02722382.

Approaching the COVID-19 Pandemic Response With a Health Equity Lens: A Framework for Academic Health Systems.

Racially and ethnically diverse and socioeconomically disadvantaged communities have historically been disproportionately affected by disasters and public health emergencies in the United States. The U.S. Department of Health and Human Services' Office of Minority Health established the National Consensus Panel on Emergency Preparedness and Cultural Diversity to provide guidance to agencies and organizations on developing effective strategies to advance emergency preparedness and eliminate disparities among racially and ethnically diverse communities during these crises. Adopting the National Consensus Panel recommendations, the Johns Hopkins Medicine Office of Diversity, Inclusion, and Health Equity; Language Services; and academic-community partnerships used existing health equity resources and expertise to develop an operational framework to support the organization's COVID-19 response and to provide a framework of health equity initiatives for other academic medical centers. This operational framework addressed policies to support health equity patient care and clinical operations, accessible COVID-19 communication, and staff and community support and engagement, which also supported the National Standards for Culturally and Linguistically Appropriate Services in Health and Health Care. Johns Hopkins Medicine identified expanded recommendations for addressing institutional policy making and capacity building, including unconscious bias training for resource allocation teams and staff training in accurate race, ethnicity, and language data collection, that should be considered in future updates to the National Consensus Panel's recommendations.

Comparing Critical Care Admissions Among Urban Populations Before and During the COVID-19 Pandemic.

In the context of the COVID-19 pandemic, reassessing intensive care unit (ICU) use by population should be a priority for hospitals planning for critical care resource allocation. In our study, we reviewed the impact of COVID-19 on a community hospital serving an urban region, comparing the sociodemographic distribution of ICU admissions before and during the pandemic. We executed a time-sensitive analysis to see if COVID-19 ICU admissions reflect the regional sociodemographic populations and ICU admission trends before the pandemic. Sociodemographic variables included sex, race, ethnicity, and age of adult patients (ages 18 years and older) admitted to the hospital's medical and cardiac ICUs, which were converted to COVID-19 ICUs. The time period selected was 18 months, which was then dichotomized into pre-COVID-19 admissions (December 1, 2018 to March 13, 2020) and COVID-19 ICU admissions (March 14 to May 31, 2020). Variables were compared using Fisher's exact tests and Wilcoxon tests when appropriate. During the 18-month period, 1,861 patients were admitted to the aforementioned ICUs. The mean age of the patients was 62.75 (SD 15.57), with the majority of these patients being male (52.23%), White (64.43%), and non-Hispanic/Latinx (95.75%). Differences were found in racial and ethnic distribution comparing pre-COVID-19 admissions to COVID-19 admissions. Compared with pre-COVID-19 ICU admissions, we found an increase in African American versus White admissions (P = .01) and an increase in Hispanic/Latinx versus non-Hispanic/Latinx admissions (P < .01), during the COVID-19 pandemic. During the first 3 months of admissions to COVID-19 ICUs, the number of admissions among Hispanic/Latinx and African American patients increased while the number of admissions among non-Hispanic/Latinx and White patient decreased, compared with the pre-COVID-19 period. These findings support development of strategies to enhance allocation of resources to bolster novel, equitable strategies to mitigate the incidence of COVID-19 in urban populations.