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.

After-action review of the 2009-10 H1N1 Influenza Outbreak Response: Ohio's Public Health System's performance.

OBJECTIVE: In early 2009, H1N1 influenza was identified within the human population. Centers for Disease Control and Prevention (CDC) officials responded with focused assessment, policy development, and assurances. The response was mobilized through efforts including procurement of adequate vaccine supply, local area span of control, materials acquisition, and facilities and resource identification. METHODS: Qualitative evaluation of the assurance functions specific to the system's ability to assure safe and healthy conditions are reported. The methodology mirrors the Homeland Security Exercise and Evaluation Program used to assess system capability. RESULTS: Findings demonstrate the effectiveness of community responsive disease prevention efforts in partnership with the public health systems mission to unify traditional public sector systems, for-profit systems, and local area systems was accomplished. As a result of this response pharmaceutical industries, healthcare providers, healthcare agencies, police/safety, colleges, and health and human service agencies were united. CONCLUSIONS: Findings demonstrate the effectiveness of community response strategies utilizing feedback from system stakeholders. After-action review processes are critical in all-hazards preparedness. This analysis of local health district response to the H1N1 influenza outbreak informs future public health service delivery. Results provide a synthesis of local health department's emergency response strategies, challenges encountered, and future-focused emergency response strategy implementation. A synthesis is provided as to policy and practice developments which have emerged over the past seven years with regard to lessons learned from the 2009-10 H1N1 influenza outbreak and response.