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The COVID-19 pandemic had an abrupt impact on patient-oriented research early in the pandemic. CTSA Clinical Research Centers (CRCs) rapidly adapted to this challenge, but the continued impact of later phases of the pandemic on CRC operations is not clear.
Methods:
An online REDCap survey of CTSA CRCs was developed that covered the first 2 years of the pandemic. The survey focused on impact on CRC functions, mitigation strategies, recovery of CRC activities, CRC contributions to COVID-related research, and potential lessons for future public health emergencies. The survey was sent to CRC directors at 61 CTSA Hubs in May 2022.
Results:
Twenty-seven Hubs (44%) responded to the survey. Most CRCs reported greater than 50% declines in inpatient census in the first year of the pandemic, with less severe impacts on outpatient census. CRCs pivoted to support COVID-related research and adopted innovative technology-driven approaches to support clinical research. Census improved in the second year of the pandemic in most CRCs but often remained below pre-pandemic levels, and greater than half of CRCs reported decreased revenue.
Conclusions:
CTSA-supported CRCs faced unprecedented challenges at the onset of the COVID-19 pandemic and responded rapidly to support COVID-related research and implement innovative approaches that allowed patient-oriented research activities to resume. However, many CRCs continued to report decreased research activities in the second year of the pandemic, and the long-term effects on CRC operations on finances are not clear. CRCs will likely need to evolve to provide support in nontraditional ways.
To make pragmatic recommendations on best practices for the engagement of patients in emergency medicine (EM) research.
Methods
We created a panel of expert Canadian EM researchers, physicians, and a patient partner to develop our recommendations. We used mixed methods consisting of 1) a literature review; 2) a survey of Canadian EM researchers; 3) qualitative interviews with key informants; and 4) feedback during the 2017 Canadian Association of Emergency Physicians (CAEP) Academic Symposium.
Results
We synthesized our literature review into categories including identification and engagement, patients’ roles, perceived benefits, harms, and barriers to patient engagement; 40/75 (53% response rate) invited researchers completed our survey. Among respondents, 58% had engaged patients in research, and 83% intended to engage patients in future research. However, 95% stated that they need further guidance to engage patients. Our qualitative interviews revealed barriers to patient engagement, including the need for training and patient partner recruitment.
Our panel recommends 1) an overarching positive recommendation to support patient engagement in EM research; 2) seven policy-level recommendations for CAEP to support the creation of a national patient council, to develop, adopt and adapt training material, guidelines, and tools for patient engagement, and to support increased patient engagement in EM research; and 3) nine pragmatic recommendations about engaging patients in the preparatory, execution, and translational phases of EM research.
Conclusion
Patient engagement can improve EM research by helping researchers select meaningful outcomes, increase social acceptability of studies, and design knowledge translation strategies that target patients’ needs.
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