Search

Crowdfunding involves raising money from large groups of individuals, often through the use of websites dedicated to this purpose. Crowdfunding campaigns aimed at raising money to pay for expenses related to receiving medical treatment are receiving increased media attention and there is evidence that medical crowdfunding websites are heavily used. Nonetheless, virtually no scholarly attention has been paid to these medical crowdfunding campaigns and there is no systematic evidence about how widely they are used and for what reasons, and what effects they have on the provision of medical care and individuals' relationships to their health systems. Ethical concerns have been raised in relation to these campaigns, focusing on issues for campaigners and donors such as exposure to fraudulent campaigns, loss of privacy, and fairness in how medical crowdfunding funds are distributed. Medical crowdfunding websites themselves have not been systematically studied, despite their significant influence on how these campaigns are developed and promoted. In this paper, we identify three very broad and pressing ethical questions regarding medical crowdfunding for social scientists to address and offer some preliminary insights into key issues informing future answers to each: Who benefits the most from medical crowdfunding and how does medical crowdfunding affect access to medical care; How does medical crowdfunding affect our understanding of the causes of inadequate access to medical care; and How are campaigner and donor privacy affected by website design? Our observations indicate the need for increased scholarly attention to the ethical and practical effects of medical crowdfunding for campaigners, recipients, donors, and the health system as a whole. [ABSTRACT FROM AUTHOR]

In recent years the academic landscape has been shifting and significantly affected by the introduction of an ‘impact agenda’. Academics are increasingly expected to demonstrate their broader engagement with the world and evidence related outcomes. Whilst different countries are at various stages along this impact journey, the UK is the first country to link impact to funding outcomes; here impact now accounts for 20% of an academic unit of assessment’s Research Excellence Framework (REF) result. This concept of ‘research impact’ implies that our work can effect change through one or more identifiable events in a direct, preferably linear and certainly measurable manner. In this paper, focusing on impact in social science, and policy-related impact in particular, we argue that such a cause and effect model is inappropriate. Furthermore that impact is not immediate or indeed linear within social science research. Drawing on recent work on alcohol and tobacco environments in Scotland we present a case study of impact, reflect on the process and respond to the challenges of moving beyond ‘business as usual’ public participation towards the measurement of outcomes. In doing so we critique the way in which ‘impact’ is currently measured and suggest a move towards an enlightenment model with greater recognition of process. [ABSTRACT FROM AUTHOR]

There has so far only been little research attention given to how families actively engage in promoting their health in everyday life. In this paper a theoretical framework is proposed for studies of the ‘health-promoting family’ with particular focus on children''s health and well-being. This paper sets out a conceptual model for understanding how the family can play a part in promoting both the health of children and children''s capacities as health-promoting actors. It draws on contemporary social science approaches to health, the family and children, suggesting a new emphasis on the family''s ecocultural pathway, family practices and the child as a health-promoting actor. [Copyright &y& Elsevier]

This paper explores social scientists' and humanities (SSH) scholars' integration within the academic medical research environment. Three questions guided our investigation: Do SSH scholars adapt to the medical research environment? How do they navigate their career within a culture that may be inconsistent with their own? What strategies do they use to gain legitimacy? The study builds on three concepts: decoupling, doxa, and epistemic habitus. Twenty-nine semi-structured interviews were conducted with SSH scholars working in 11 faculties of medicine across Canada. Participants were selected through purposeful and snowball sampling. The data were analyzed by thematic content analysis. For most of our participants, moving into medicine has been a challenging experience, as their research practices and views of academic excellence collided with those of medicine. In order to achieve some level of legitimacy more than half of our participants altered their research practices. This resulted in a dissonance between their internalized appreciation of academic excellence and their new, altered, research practices. Only six participants experienced no form of challenge or dissonance after moving into medicine, while three decided to break with their social science and humanities past and make the medical research community their new home. We conclude that the work environment for SSH scholars in faculties of medicine does not deliver on the promise of inclusiveness made by calls for interdisciplinarity in Canadian health research. [ABSTRACT FROM AUTHOR]

Abstract: Conducting anthropological research into situations where public health interventions are ongoing raises a number of complex ethical issues. This paper addresses this by focusing on recent debate around questions of informed consent in research situations into health care in the ‘developing’ world. Two issues are developed: firstly, that of anthropological engagement with medical research trials; and secondly, how medical ethics debates have impinged upon and influenced anthropological ideas of ethics. Drawing on personal anthropological research into the implementation of the WHO prescribed tuberculosis control programme (DOTS) in the context of Nepal, I outline a number of ethical dilemmas and issues that arose. This research context included other ongoing research into DOTS implementation, as well as the local culture of health care provision. It involved moving between a number of sites and subject positions while interacting with heath professionals and patients. In conclusion, rather than prescribing ethical norms for researchers in such situations, I argue that we need more ethnographic examples and case studies as a means of thinking through the issues. I suggest that we need to reflect on both the ethical issues that arise when undertaking research into multifaceted public health interventions and into the situations where ethical guidelines and stipulations are formulated. The best place for this may be the Internet, where we increasingly see the conditions emerging for open dialogue. [Copyright &y& Elsevier]