The Role of Clinical Researchers During COVID-19: Balancing Individual, Scientific, and Social Benefits of Research

Abstract

Clinical and research psychologists around the world are experiencing various challenges due to the COVID-19 pandemic. Quarantine, mobility restrictions and health risks associated with the new SARS-CoV-2 virus have disrupted studies, which has impacted data collection, project coordination and monitoring efforts. Researchers have had to shift and adapt their fields of research. Consequently, various studies regarding COVID-19 have emerged. In Panama, a multidisciplinary research group, the Panama Aging Research Initiative (PARI), has been studying the characteristics associated with aging among the Panamanian population for the last 10 years. Due to the COVID-19 pandemic, enrollment and assessment of elderly participants came to a halt being as they are most vulnerable to COVID-19. As the team became involved in pandemic-related studies, it faced an unfamiliar challenge: to collect data from hospitalized patients who had tested positive to SARS-CoV-2. This opinion article aims to present our experience with COVID-19 patients and critically explore the role of clinical researchers in emergency situations as they balance between the individual, scientific and social benefits of research. Conducting research during health emergency situations is an ethical responsibility for researchers, institutions and countries (1). From vaccine and pharmaceutical clinical trials to psychology and social research, obtaining scientific data is critical to create guidelines, adequately clarify or identify risk factors and clinical symptoms, evaluate tests and generate appropriate interventions (2). Nevertheless, collecting clinical data in emergencies requires adaptation to extreme settings, flexibility, and agility (3, 4). Health emergencies imply special ethical circumstances above and beyond normal. Initially, protocols must undergo evaluation and approval from a bioethics committee. Nevertheless, in some countries ethic reviews can take months; therefore, in emergencies it is crucial that institutions accelerate review processes of research protocols while maintaining quality (1, 5). Also, in health crises, the perception of risks and benefits must be taken into account, as these can change over time. Moreover, accountability and transparency must be carefully monitored (5). Informed consents as well as other ethics considerations such as ensuring ethical treatment of vulnerable groups, guaranteeing scientific validity and social value, benefit vs. risks assessments, are fundamental in researching during critical conditions (6). Conducting research in health emergencies poses many challenges, particularly for low- and middle-income countries. These obstacles can include the unpredictable nature of the crisis itself, limited healthcare systems and infrastructures, ruptured communication between the scientific and political systems, limited funding, and inadequate policies in response to epidemics (1). In Asian and African countries, previous pandemics such as Ebola, SARS-CoV1 and MERS-CoV gave researchers an idea of what to expect during COVID-19 pandemic (7, 8). Formerly, in the Latin American and Caribbean (LAC) region, a Zika outbreak forced researchers to generate research networks rapidly in order to be able to respond to the different needs as the outbreak unraveled (9). Nevertheless, the LAC region was unprepared for the current pandemic's magnitude and has become one of the most affected regions (10). In the case of Panama, as in most countries, COVID-19 revealed many social, health, economic and educational inequalities and has mainly affected the most disadvantaged individuals (10). Data collection in the hospital research context revealed insufficient medical personnel and infrastructure. Also, researchers encountered complex challenges in enrollment, such as difficulties reaching patients eligible for the study, as well as participants' fears and psychological distress. In Panama, in April 2020, the PARI group began a seroprevalence antibody study in three different groups, namely healthcare workers, healthy controls recruited from a blood donor clinic and SARS-CoV-2 positive hospitalized patients from public hospitals (11). The research instruments included an initial informed consent, an interview to obtain sociodemographic information, previous diseases and COVID-19 related symptoms and the collection of a blood sample. Data collection in the current health emergency, specifically from positive hospitalized patients posed a series of adversities. As it was the beginning of the pandemic, different situations hindered research conditions; knowledge on the virus was scarce, there was a high mortality rate and there were no approved treatments. Additionally, as in many countries, we faced situations such as limited personal protection equipment and poor conditions in hospital facilities. In this high uncertainty, high risk context, we also faced limitations regarding participant selection. Patients' level of illness varied. Some patients were delirious, cognitively impaired or experiencing psychological distress affecting their ability to talk. This required a careful evaluation of which participants were eligible to be offered participation in the study. We had to seek the balance between being just and offering the study to everyone, but also recognizing whether or not some people in a situation of vulnerability can be contemplated as research participants. Second, as we addressed the COVID-19 patients, we were faced with realities that included educational, cultural and language barriers. Such challenges are common to many studies in Panama. One of the main difficulties was a low literacy level. Even though literacy rates in the last 12 years have increased in 50% and currently adult literacy rates are ~95.4%, the mean number of years of schooling is 10 (12) and education quality has been reported to be deficient (13). Moreover, some of the patients belonged to indigenous groups,...