Casimir MacGregor

Stem cell miracles or Russian roulette?: patients’ use of digital media to campaign for access to clinically unproven treatments

In this article, we examine how patients use digital media to gain access to treatments that have yet to be clinically proven as safe and effective. Making reference to the case of an Australian patient who achieved notoriety following a 60 Minutes television programme in 2014 following her travel to Russia to undertake stem cell treatment, in the article we discuss the dynamic interplay of discourses of hope, risk and trust in this digitally mediated context. As we argue, Web 2.0 digital media provides patient activists with a powerful means to generate their own framings of the significance of treatments especially when linked with more traditional media such as television. Our findings underline how citizens may use digital media to create ‘communities of hope’ that sustain optimistic portrayals of treatments that may be resistant to official, regulatory discourses of risk-benefit and trust. Patients’ growing use of digital media, we conclude, necessitates a reconceptualisation of ‘health’ and ‘risk’ and approaches to regulating treatments that are unproven and hence deemed ‘risky’.

A Global Social Media Survey of Attitudes to Human Genome Editing

Ongoing breakthroughs with CRISPR/Cas-based editing could potentially revolutionize modern medicine, but there are many questions to resolve about the ethical implications for its therapeutic application. We conducted a worldwide online survey of over 12,000 people recruited via social media to gauge attitudes toward this technology and discuss our findings here.

Cognitive impairment is a risk factor for delayed analgesia in older people with long bone fracture: a multicenter exploratory study.

ABSTRACT Background: Older people who present to the emergency department (ED) often experience a significant delay to analgesia. This study compares the time to analgesia for cognitively impaired and cognitively intact older people diagnosed with a long bone fracture. Methods: The aim of the study was to determine if cognitive impairment is associated with a delayed analgesic response. A 12-month exploratory study, using patient data, was conducted across four EDs. Medical records of 264 patients with long bone fractures were randomly selected. Results: The majority of patients waited longer than 60 minutes for analgesia. The median time to analgesia was longer for the cognitively impaired (149 minutes) compared with cognitively intact (72 minutes; Mann-Whitney U test: p < 0.001). Conclusions: This study suggests that cognitive impairment is a significant risk factor for delayed analgesia response in the ED.

An Interactive Multimedia Approach to Improving Informed Consent for Induced Pluripotent Stem Cell Research.

Heralded as an ethical alternative to human embryonic stem cells, the derivation of induced pluripotent stem cells (iPSCs) has opened novel avenues for disease modeling and cell-based therapy; however, with the increasing capacity for large-scale collections of individual iPSC lines there is a pressing need to ensure that prospective tissue donors are adequately informed of the implications of their participation (Isasi et al., 2014). Although previous work has sought to outline the issues particular to iPSC research that are of interest to the general public (Dasgupta et al., 2014) and detailed consent guidelines have been described (Aalto-Setala et al., 2009; Dasgupta et al., 2014; Lomax et al., 2013), little attention has focused on systematically assessing the quality or efficacy of the informed consent process.

The experience of living with chronic illness for the haemodialysis patient: An interpretative phenomenological analysis

Abstract This study examines experiences of living with chronic illness for haemodialysis patients. In order to Understand these experiences the paper takes an existential-phenomenological approach. Interviews of seven participants (five males, two females) were collected in a haemodialysis clinic. Based upon the participants experiences three core themes emerged: (1) the challenges of living with chronic renal failure; (2) body changes and embodiment; (3) their illness experience and social relationships. The findings suggest that the illness experience of chronic renal failure is an on-going struggle to attain a sense of control. We suggest that where a sense of control is limited this can create a sense of powerlessness. Further, the illness experience was not solely restricted to the individual, but also affected wider social relationships. It is only through taking into account the context of patients experience of illness that clinicians/nurses can meaningfully draw on all aspects of evidence to reach integrated clinical judgement.

Measuring patient dependency - Performance of the Jones Dependency tool in an Australian emergency department

BACKGROUND The emergency department (ED) is a dynamic environment, in which a high volume of undifferentiated patients with varying levels of urgency must be assessed and treated in a timely manner, primarily by nurses. Nurses not only provide initial but also continuing care for all patients presenting to the ED. Predicting the number of nurses required and the ideal ratio of nursing staff to patients presenting is complex. Current methods of predicting ED nursing workforce fail to reflect the severity and variability of illness/injury or case mix. In addition, they exclude the realities of patients have different nursing requirements, that patient stability changes frequently and that issues such as patient surge (sudden high volumes of presentations) do occur. The aim of this study was to examine the potential for using the Jones Dependency Tool (JDT) for determining patient dependency in the Australian context. METHODS A prospective cohort study design based upon a convenience sample of patients was conducted over a randomly selected two-week period. RESULTS The JDT proved both valid, reliable and sensitive to changes in patients status. The majority of patient presentations occurred from 6 am to 3 pm, patient dependency peaked from 3 pm to 6 pm, and then continued to rise over night when the least nursing staff are allocated to work. The majority (n=321, 50%) of the patients presenting to the ED were of moderate dependency. As patient dependency increased, patients were allocated to treatment areas with higher nurse-patient ratios. Patients allocated to the ambulance bay, which is not routinely staffed by nurses, were found to have similar levels of moderate to high dependency as those managed in the acute or resuscitation bay, therefore patients are reliant upon ambulance personnel for their care needs. Patient dependency was found to increase with age and degree of immobility. The JDT is sensitive to changes in patients dependency over time, and may assist with discharge planning or ward handover. CONCLUSIONS This study has demonstrated that the JDT can consistently measure patient dependency within one Australian adult ED. Further testing of the JDT needs to be undertaken in order to explore the potential for the tool to contribute to nurse-patient ratio models and patient communication handover.

Confidence and impact on clinical decision-making and behaviour in the emergency department

BACKGROUND Clinical competency is underpinned by the self-confidence of nurses to act. Confidence may be critical to the understanding of how practice choices are made and not made by nurses in extended practice roles. The aim of this study was to explore how emergency nurses perceived (i) self-confidence in undertaking an extended practice role; and (ii) the factors associated with confidence within clinical practice. METHODS A multicentred qualitative exploratory study. Fifty two participants were included in the study. Across three sites 36 (28 females, 8 males) face to face interviews and 16 non-participant observations (13 females, 3 males) were conducted. RESULTS The study generated new knowledge about self-confidence, self-efficacy and the role that contextual factors have in regulating behaviour. It shows that self-confidence is an important resource that sustains a nurses ability to problem solve and to critically think in order to determine how best to act. CONCLUSIONS The development of self-confidence is important if we are to promote effective clinical decision-making. Education programmes need to identify strategies that can promote and support the development of self-confidence and resilience.

The Immortal Life of Ethics? The Alienation of Body Tissue, Ethics and the Informed Consent Procedure Within Induced Pluripotent Stem Cell Research

In this chapter, we discuss the creation, in 2007, of induced pluripotent stem cells (iPSCs) as an ethical alternative to human embryonic stem cells . In so doing, we raise a series of questions around the social, ethical and legal issues associated with iPSC. Drawing on empirical research, we explore results from an in-depth study into participant motivations for donating tissue for the generation of patient-specific iPSCs, and discuss participant attitudes and understanding of ethical issues surrounding iPSC research. We suggest that current ethical and informed consent practices and guidelines are not adequate for emerging biotechnologies, such as iPSCs, and argue that new methods of communicating informed consent to research participants are required.

The right to life: Human life, bio-power and the performativity of law

This article considers the performativity of law in regard to constructing life as either human or non-human; personifying a 15-days group of cells while transforming a fully formed foetus to hospital waste. I suggest that the practice of a human rights approach to a sociology of bio-knowledge needs to attend to the contested nature of humanness and the question of how law is operationalised within power/knowledge. I argue that such an approach would include recognition of the process of the creation and the bearing of rights, especially the right to life that is based upon a particular relationship between nature and culture. Finally, I argue that law is central to constituting humanness, as human life can be paradoxically both included and excluded by law. The practice of a human rights approach to a sociology of bio-knowledge must focus on the performativity of law, as law is a tool of bio-power that regulates the right to life.

‘Choice’, Hope, and Stem Cell Treatments

As perhaps the most visible aspect of an increasingly global healthcare market, medical tourism would seem to epitomise the ‘consumer choice’ of free-market capitalism and everything that is seen to entail—namely, self-determination via freedom to decide treatments and travel, freedom of mobility, and the consumption of products and services that are ‘personalised’. In societies governed by neoliberal philosophies and policies, ‘freedom of choice’ has strong appeal, suggesting the absence of personal constraint or self-control over one’s circumstances and destiny. But what does ‘choice’ mean for patients and their carers in contexts where there are few or no clinically proven treatment options available to them, or where options that are presented are perceived as equally undesirable or unaffordable?