Creative methods: anonymity, visibility and ethical re-representation

Researchers employ creativity in their studies when designing, conducting, and presenting their data; in this way creativity is central to academic practice. Within this more general sense of being creative, “creative methods,” as presented in this chapter, refer to creativity in the literal sense, where researchers and participants are involved in producing visual images, artefacts, or other representations, through a range of arts-based or performative techniques. This creative and novel “making” is often associated with the field of creative methods in visual studies, particularly in relation to photography and film. The recognizability of people and places in these photographic modes has invoked tensions between revealing and concealing the visual images we produce in social research, in relation to confidentiality and anonymity. This becomes more problematic in a climate where the burgeoning use of new technologies means that images are more easily shared, disseminated, and distorted. Accordingly, once a visual image is created, it becomes very difficult to control its use or remove it from public view if participants decide that they no longer want to be represented in a fixed visual trope for time immemorial or if they decide to withdraw their data from a study. Arguments around anonymity and participant visibility are most closely related to photographs and film. However, it remains important to explore the ethical issues around other creative practices where researchers and participants make something new and understand that such issues can also be contentious. This chapter focuses on techniques of data production, including drawing, collaging, and sandboxing, where participants are involved in creating some form of artefact to represent aspects of their lives and experiences. It examines how these creative approaches generate a number of uncertainties around voice, confidentiality, informed consent, avoidance of harm, and future use. The chapter also explores the opportunities that creative approaches, which produce novel outputs, can offer in re-representing and revisualizing research data, engaging audiences in nontraditional formats, and increasing the impact of research studies. In this way, the chapter offers an insight into the ethical risks and potentialities of creative methods as tools of both data production and dissemination

The International Network for Evaluating Outcomes (iNeo) of neonates: evolution, progress and opportunities

Neonates born very preterm (before 32 weeks’ gestational age), are a significant public health concern because of their high-risk of mortality and life-long disability. In addition, caring for very preterm neonates can be expensive, both during their initial hospitalization and their long-term cost of permanent impairments. To address these issues, national and regional neonatal networks around the world collect and analyse data from their constituents to identify trends in outcomes, and conduct benchmarking, audit and research. Improving neonatal outcomes and reducing health care costs is a global problem that can be addressed using collaborative approaches to assess practice variation between countries, conduct research and implement evidence-based practices. The International Network for Evaluating Outcomes (iNeo) of neonates was established in 2013 with the goal of improving outcomes for very preterm neonates through international collaboration and comparisons. To date, 10 national or regional population-based neonatal networks/datasets participate in iNeo collaboration. The initiative now includes data on >200,000 very preterm neonates and has conducted important epidemiological studies evaluating outcomes, variations and trends. The collaboration has also surveyed >320 neonatal units worldwide to learn about variations in practices, healthcare service delivery, and physical, environmental and manpower related factors and support services for parents. The iNeo collaboration serves as a strong international platform for Neonatal-Perinatal health services research that facilitates international data sharing, capacity building, and global efforts to improve very preterm neonate care