29 research outputs found

    Democratic cultural policy : democratic forms and policy consequences

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    The forms that are adopted to give practical meaning to democracy are assessed to identify what their implications are for the production of public policies in general and cultural policies in particular. A comparison of direct, representative, democratic elitist and deliberative versions of democracy identifies clear differences between them in terms of policy form and democratic practice. Further elaboration of these differences and their consequences are identified as areas for further research

    Key stakeholder perceptions about consent to participate in acute illness research: a rapid, systematic review to inform epi/pandemic research preparedness

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    Background A rigorous research response is required to inform clinical and public health decision-making during an epi/pandemic. However, the ethical conduct of such research, which often involves critically ill patients, may be complicated by the diminished capacity to consent and an imperative to initiate trial therapies within short time frames. Alternative approaches to taking prospective informed consent may therefore be used. We aimed to rapidly review evidence on key stakeholder (patients, their proxy decision-makers, clinicians and regulators) views concerning the acceptability of various approaches for obtaining consent relevant to pandemic-related acute illness research. Methods We conducted a rapid evidence review, using the Internet, database and hand-searching for English language empirical publications from 1996 to 2014 on stakeholder opinions of consent models (prospective informed, third-party, deferred, or waived) used in acute illness research. We excluded research on consent to treatment, screening, or other such procedures, non-emergency research and secondary studies. Papers were categorised, and data summarised using narrative synthesis. Results We screened 689 citations, reviewed 104 full-text articles and included 52. Just one paper related specifically to pandemic research. In other emergency research contexts potential research participants, clinicians and research staff found third-party, deferred, and waived consent to be acceptable as a means to feasibly conduct such research. Acceptability to potential participants was motivated by altruism, trust in the medical community, and perceived value in medical research and decreased as the perceived risks associated with participation increased. Discrepancies were observed in the acceptability of the concept and application or experience of alternative consent models. Patients accepted clinicians acting as proxy-decision makers, with preference for two decision makers as invasiveness of interventions increased. Research regulators were more cautious when approving studies conducted with alternative consent models; however, their views were generally under-represented. Conclusions Third-party, deferred, and waived consent models are broadly acceptable to potential participants, clinicians and/or researchers for emergency research. Further consultation with key stakeholders, particularly with regulators, and studies focused specifically on epi/pandemic research, are required. We highlight gaps and recommendations to inform set-up and protocol development for pandemic research and institutional review board processes

    Health practice and relationships

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    The quality, resourcing and accessibility of healthcare is a key issue facing societies in the 21st century. Despite the system delivery focus of these factors it is critical to remember that healthcare is a human service and as such, people need to be placed at the centre of healthcare systems and processes. To do this we need to improve the way that people are valued and involved in healthcare practices. Professional relationships lie at the heart of such practices. This book illuminates and challenges professional healthcare relationships. The authors examine the nature, context and purpose of healthcare relationships, explore models through which these relationships are enacted, developed and critiqued, and provide narratives of health practice relationships in action. These narratives reveal how health practice relationships are experienced and created in real-world situations. The various chapters generate a range of implications and recommendations for healthcare practice and systems and for the education of health professionals. This is a book for practitioners, educators, clients, members of the community, advocacy and agency groups, regulatory bodies and those with power to shape the future direction of healthcare
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