Talking to the people that really matter about their participation in pandemic clinical research: A qualitative study in four European countries (original) (raw)
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BMC Medical Research Methodology
Background Virtual data collection methods and consent procedures adopted in response to the COVID-19 pandemic enabled continued research activities, but also introduced concerns about equity, inclusivity, representation, and privacy. Recent studies have explored these issues from institutional and researcher perspectives, but there is a need to explore patient perspectives and preferences. This study aims to explore COVID-19 patients’ perspectives about research recruitment and consent for research studies about COVID-19. Methods We conducted an exploratory qualitative focus group and interview study among British Columbian adults who self-identified as having had COVID-19. We recruited participants through personal contacts, social media, and REACH BC, an online platform that connects researchers and patients in British Columbia. We analyzed transcripts inductively and developed thematic summaries of each coding element. Results Of the 22 individuals recruited, 16 attended a focus...
Carrying Out Rapid Qualitative Research During a Pandemic Emerging Lessons From COVID-19
2020
Social scientists have a robust history of contributing to better understandings of and responses to disease outbreaks. The implementation of qualitative research in the context of infectious epidemics, however, continues to lag behind in the delivery, credibility, and timeliness of findings when compared with other research designs. The purpose of this article is to reflect on our experience of carrying out three research studies (a rapid appraisal, a qualitative study based on interviews, and a mixed-methods survey) aimed at exploring health care delivery in the context of COVID-19. We highlight the importance of qualitative data to inform evidence-based public health responses and provide a way forward to global research teams who wish to implement similar rapid qualitative studies. We reflect on the challenges of setting up research teams, obtaining ethical approval, collecting and analyzing data in real-time and sharing actionable findings.
2020
Supplemental material, sj-pdf-1-qhr-10.1177_1049732320951526 for Carrying Out Rapid Qualitative Research During a Pandemic: Emerging Lessons From COVID-19 by Cecilia Vindrola-Padros, Georgia Chisnall, Silvie Cooper, Anna Dowrick, Nehla Djellouli, Sophie Mulcahy Symmons, Sam Martin, Georgina Singleton, Samantha Vanderslott, Norha Vera and Ginger A. Johnson in Qualitative Health Research
International Journal of Qualitative Methods
Qualitative research is integral to the pandemic response. Qualitative methods are ideally suited to generating evidence to inform tailored, culturally appropriate approaches to COVID-19, and to meaningfully engaging diverse individuals and communities in response to the pandemic. In this paper, we discuss core ethical and methodological considerations in the design and implementation of qualitative research in the COVID-19 era, and in pivoting to virtual methods—online interviews and focus groups; internet-based archival research and netnography, including social media; participatory video methods, including photo elicitation and digital storytelling; collaborative autoethnography; and community-based participatory research. We identify, describe, and critically evaluate measures to address core ethical challenges around informed consent, privacy and confidentiality, compensation, online access to research participation, and access to resources during a pandemic. Online methods nee...
International Journal of Scientific Reports
Research is a vital driver of the response to health emergencies. This scoping review aimed to characterize the application of qualitative research during the COVID-19 pandemic, with two primary objectives: identifying the qualitative research methods and adaptations applied, and summarizing the research questions which the studies sought to answer. CINAHL and PsycINFO were systematically searched for qualitative studies relating to COVID-19 and published between January 2020 and November 2021. Articles were screened and included in the review using pre-defined eligibility criteria. A total of 535 articles met the inclusion criteria, mostly from North America and Europe. An observed methodological adaptation was a surge in virtually conducted research – most studies collected data through interviews, 52% of which were conducted virtually using telephone or teleconferencing technology. Similarly, 27% of the focus group discussions and 20% of the ethnographies were conducted virtually...
BACKGROUND The COVID-19 pandemic is a threat to global health and requires collaborative health research efforts across organizations and countries to address it. Although routinely collected digital health data are a valuable source of information for researchers, benefiting from these data requires accessing and sharing the data. Health care organizations focusing on individual risk minimization threaten to undermine COVID-19 research efforts, and it has been argued that there is an ethical obligation to use the European Union’s General Data Protection Regulation (GDPR) scientific research exemption during the COVID-19 pandemic to support collaborative health research. OBJECTIVE This study aims to explore the practices and attitudes of stakeholders in the German federal state of Bavaria regarding the secondary use of health data for research purposes during the COVID-19 pandemic, with a specific focus on the GDPR scientific research exemption. METHODS Individual semistructured qua...
2022
Background. Science communication can provide people with more accurate information on pandemic health risks by translating complex scientific topics into language that helps people make more informed choices on how to protect themselves and others. During pandemics, experts in medicine, science, public health, and communication are important sources of knowledge for science communication. This study uses the COVID-19 pandemic to explore these experts opinions and knowledge of what to communicate to the public during a pandemic. The research question is: What are the key topics to communicate to the public about health risks during a pandemic? Method. We purposively sampled 13 experts in medicine, science, public health, and communication for individual interviews, with a range of different types of knowledge of COVID-19 risk and communication at the national, regional and hospital levels in Norway. The interview transcripts were coded and analysed inductively in a qualitative thema...
Journal of Medical Internet Research, 2022
Background: The COVID-19 pandemic is a threat to global health and requires collaborative health research efforts across organizations and countries to address it. Although routinely collected digital health data are a valuable source of information for researchers, benefiting from these data requires accessing and sharing the data. Health care organizations focusing on individual risk minimization threaten to undermine COVID-19 research efforts, and it has been argued that there is an ethical obligation to use the European Union's General Data Protection Regulation (GDPR) scientific research exemption during the COVID-19 pandemic to support collaborative health research. Objective: This study aims to explore the practices and attitudes of stakeholders in the German federal state of Bavaria regarding the secondary use of health data for research purposes during the COVID-19 pandemic, with a specific focus on the GDPR scientific research exemption. Methods: Individual semistructured qualitative interviews were conducted between December 2020 and January 2021 with a purposive sample of 17 stakeholders from 3 different groups in Bavaria: researchers involved in COVID-19 research (n=5, 29%), data protection officers (n=6, 35%), and research ethics committee representatives (n=6, 35%). The transcripts were analyzed using conventional content analysis. Results: Participants identified systemic challenges in conducting collaborative secondary-use health data research in Bavaria; secondary health data research generally only happens when patient consent has been obtained, or the data have been fully anonymized. The GDPR research exemption has not played a significant role during the pandemic and is currently seldom and restrictively used. Participants identified 3 key groups of barriers that led to difficulties: the wider ecosystem at many Bavarian health care organizations, legal uncertainty that leads to risk-adverse approaches, and ethical positions that patient consent ought to be obtained whenever possible to respect patient autonomy. To improve health data research in Bavaria and across Germany, participants wanted greater legal certainty regarding the use of pseudonymized data for research purposes without the patient's consent. Conclusions: The current balance between enabling the positive goals of health data research and avoiding associated data protection risks is heavily skewed toward avoiding risks; so much so that it makes reaching the goals of health data research extremely difficult. This is important, as it is widely recognized that there is an ethical imperative to use health data to improve care. The current approach also creates a problematic conflict with the ambitions of Germany, and the federal state of Bavaria, to be a leader in artificial intelligence. A recent development in the field of German public administration known as norm screening
Restrictive Measures in an Influenza Pandemic: A Qualitative Study of Public Perspectives
Canadian Journal of Public Health, 2012
Objectives: Recent experiences have demonstrated that restrictive measures remain a useful public health tool during infectious disease outbreaks. However, the use of restrictive measures is not without controversy, as there is no agreed-upon threshold for when and how to invoke restrictive measures. The objectives of this study are to solicit perspectives from Canadians on the ethical considerations of using restrictive measures in response to influenza pandemics, and in turn, to use public views to contribute to a better understanding of what is considered to be the justifiable use of restrictive measures. Methods: A series of town hall focus groups with Canadian residents from June 2008 to May 2009, in three Canadian regions, in order to achieve broad public engagement (n=3 focus groups with a total of 17 participants). Results: Two key themes emerged from all town hall focus groups: 1) create an environment for compliance through communication rather than enforcement, and 2) est...