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The public and patients are primary contributors and beneficiaries of pandemic-relevant clinical research. However, their views on research participation during a pandemic have not been systematically studied. We aimed to understand public views regarding participation in clinical research during a hypothetical influenza pandemic. This is an international cross-sectional survey. We surveyed the views of nationally representative samples of people in Belgium, Poland, Spain, Ireland, the United Kingdom, Canada, Australia and New Zealand, using a scenario-based instrument during the 2017 regional influenza season. Descriptive and regression analyses were conducted. Of the 6804 respondents, 5572 (81.8%) thought pandemic-relevant research was important, and 5089 (74.8%) thought 'special rules' should be applied to make this research feasible. The respondents indicated willingness to take part in lower risk (4715, 69.3%) and higher risk (3585, 52.7%) primary care and lower risk (4780, 70.3%) and higher risk (4113, 60.4%) intensive care unit (ICU) study scenarios. For primary care studies, most (3972, 58.4%) participants preferred standard enrolment procedures such as prospective written informed consent, but 2327 (34.2%) thought simplified procedures would be acceptable. For ICU studies, 2800 (41.2%) preferred deferred consent, and 2623 (38.6%) preferred prospective third-party consent. Greater knowledge about pandemics, trust in a health professional, trust in the government, therapeutic misconception and having had ICU experience as a patient or carer predicted increased willingness to participate in pandemic-relevant research. Our study indicates current public support for pandemic-relevant clinical research. Tailored information and initiatives to advance research literacy and maintain trust are required to support pandemic-relevant research participation and engagement. • There is strong public support for pandemic-relevant clinical research initiatives. • Willingness to take part and to sign up under permissive approaches depends on type of research and key participant factors. • Knowledge of pandemics, trust in doctors and government, and experience of critical illness influence research participation. [ABSTRACT FROM AUTHOR]

Little has been written about interviewing policy-makers in health promotion and public health research. This article explores the process, pitfalls and profits of semi-structured interviews with policy-makers in 10 research projects conducted in New Zealand. Key members of each research team were surveyed about their research and findings verified against research publications. Key aspects of the process of policy-maker interviews include gaining ethical approval, navigating gatekeepers, using personal contacts and multiple research dissemination methods. Pitfalls of interviewing policy-makers include interviewers not having enough knowledge of the topic so efforts were made to use knowledgeable researchers or up-skill others. Interviews provide access to specialist knowledge of the policy process which cannot be obtained by other methods. While this study was conducted in one jurisdiction, it has implications for other countries. Effective policy-maker interviews in health promotion policy research could contribute to improvements in the quality of data collected and uptake of research by policy-makers. [ABSTRACT FROM AUTHOR]

Commonalities are presented from the experiences of U.S. nurse researchers who conducted studies in India, Jordan, Aotearoa/New Zealand, and Trinidad and Tobago. While planning research, it is important to engage collaborators who are members of the culture to be studied to understand what are culturally appropriate aims and methods. It is also vital to observe cultural etiquette, especially while gaining entrée and collecting data. Issues related to data collection include timing it around local holidays and events, and adapting individualist methods for obtaining consent and data to be more respectful for those in a collectivist culture. Care must be taken to give back, to sharing findings, and insure sustainability for future research in the host culture. Based on these and other reflections, recommendations are offered to support investigators planning research in a culture that is not their own. [ABSTRACT FROM AUTHOR]

Background: Implementation science research, especially when using participatory and co-design approaches, raises unique challenges for research ethics committees. Such challenges may be poorly addressed by approval and governance mechanisms that were developed for more traditional research approaches such as randomised controlled trials.Discussion: Implementation science commonly involves the partnership of researchers and stakeholders, attempting to understand and encourage uptake of completed or piloted research. A co-creation approach involves collaboration between researchers and end users from the onset, in question framing, research design and delivery, and influencing strategy, with implementation and broader dissemination strategies part of its design from gestation. A defining feature of co-creation is its emergent and adaptive nature, making detailed pre-specification of interventions and outcome measures impossible. This methodology sits oddly with ethics committee protocols that require precise pre-definition of interventions, mode of delivery, outcome measurements, and the role of study participants. But the strict (and, some would say, inflexible) requirements of ethics committees were developed for a purpose - to protect participants from harm and help ensure the rigour and transparency of studies. We propose some guiding principles to help square this circle. First, ethics committees should acknowledge and celebrate the diversity of research approaches, both formally (through training) and informally (by promoting debate and discussion); without active support, their members may not understand or value participatory designs. Second, ground rules should be established for co-design applications (e.g. how to judge when 'consultation' or 'engagement' becomes research) and communicated to committee members and stakeholders. Third, the benefits of power-sharing should be recognised and credit given to measures likely to support this important goal, especially in research with vulnerable communities. Co-design is considered best practice, for example, in research involving indigenous peoples in New Zealand, Australia and Canada. [ABSTRACT FROM AUTHOR]

Concerns have been expressed about adult behaviour at children's sporting events in New Zealand. As a consequence, covert observation was identified as the optimal research method to be used in studies designed to record the nature and prevalence of adult sideline behaviour at children's team sporting events. This paper explores whether the concerns raised by the ethics committee about the use of this controversial method, particularly in relation to the lack of informed consent, the use of deception, and researcher safety, were effectively managed. This is achieved by reflecting on the conduct and findings of the research and by drawing on the perspectives of research assistants who carried out the covert observation. The authors argue that in the context of these studies, the ends have justified the means and with careful attention to the design of the study the complex ethical tensions arising from the use of this method can be managed. [ABSTRACT FROM AUTHOR]

Organ donation and transplantation has the potential to save lives. Organ transfer also raises a number of ethical and emotional issues, especially in discussions around anonymity protocol and in relation to the invisible but tangible presence of shared corporeality in the course of organ transfer. In this article, which is based on in-depth interviews with organ transplant recipients and members of donor families, these issues are addressed from the perspective of a sociologist interviewing people about their experiences in this domain. In particular, the article examines what it means to do sociological research on sensitive topics with vulnerable groups in light of institutional ethics guidelines that require protecting the emotional safety of researchers and research participants during the research process. In so doing, I identify several problems with formal ethics approval procedures for researchers engaging with vulnerable groups such as organ donor family members and transplant recipients, and some of the risks associated with taking an empathic approach to social research interviewing. [ABSTRACT FROM AUTHOR]

In 2004 the Health Research Council of New Zealand (HRC) published a set of 'Guidelines on Pacific health research'. The Guidelines were an attempt to articulate the features of ethical research relationships with Pacific peoples living in Aotearoa New Zealand. This article describes the process of developing these guidelines, using Pacific knowledge paradigms and concepts as a starting point. Central to the discussion are two spatial metaphors, the Pacific concept of Va and Smith, Hudson, et al.'s (2008) contemporary concept of the negotiated space. It is asserted that via a conceptual negotiated space, traditional Pacific indigenous ethics were explored and respected in the development of the Guidelines. However, this was balanced with the desire for worldview expansion, knowledge innovation and the development of new philosophies, which required drawing from other knowledge paradigms. The process of deliberating, negotiating and, to some extent, integrating and synthesising values and ideas from different knowledge paradigms characterise the Guidelines as not only a project of restoration but also a project of transformation. [ABSTRACT FROM AUTHOR]

Indigenous peoples have expressed concerns about conventional forms of research into their lives. In response, some researchers have developed culturally appropriate models of social science research. This article reviews the author's experiences in addressing indigenous peoples' concerns about research, and hence her work toward developing a culturally appropriate and collaborative approach to cross-cultural research. A number of methodological and conceptual issues arise in cross-cultural collaborative research, including the importance of adopting a culturally appropriate research methodology, the role of the researcher, participation in the research process, rights to "traditional" indigenous knowledge, and, indeed, the nature of research-based knowledge. Each of these issues is discussed in the context of undertaking collaborative research into the lives of New Zealand's indigenous peoples, the Maori. The article also reviews the issues that arose when negotiating a research agreement between the University of Otago and local Maori for undertaking collaborative research. [ABSTRACT FROM AUTHOR]