Health expectations : an international journal of public participation in health care and health policy
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Neuromyelitis optica (NMO) is an auto-immune disease that can cause severe visual and mobility impairments. Research on health-related quality of life (HRQoL) in NMO is scarce, limiting knowledge on factors influencing HRQoL and support needs. ⋯ These findings further the conceptual understanding of HRQoL in NMO, informing patient-care approaches and the development of an NMO-specific patient-reported outcome measure.
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Priority setting and resource allocation across various healthcare functions are critical issues in health policy and strategic decision making. As health resources are limited while there are so many health challenges to resolve, consumers and payers have to make difficult decisions about expenditure allocation. ⋯ Government should encourage the citizens' participation in the decision-making process in order to eliminate the unveiled and significant disagreement between citizens' preferences and actual public health expenditure across all healthcare functions.
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There is widespread agreement that the public should be engaged in health-care decision making. One method of engagement that is gaining prominence is the citizens' jury, which places citizens at the centre of the deliberative process. However, little is known about how the jury process works in a health-care context. There is even less clarity about how consumer perspectives are heard within citizens' juries and with what consequences. ⋯ The potential role of consumer voices in influencing deliberations and recommendations of citizens' juries requires greater attention. Much needed knowledge about the nuances of deliberative processes will contribute to an assessment of the usefulness of citizens' juries as a public engagement mechanism.
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Patient question-asking is essential to shared decision making. We sought to describe patients' questions when faced with cancer prevention and screening decisions, and to explore differences in question-asking as a function of health literacy with respect to spoken information (health literacy-listening). ⋯ Patients' health literacy-listening is associated with distinctive patterns of question utilization following cancer screening and prevention counselling. Providers should not only be responsive to the question functions the patient favours, but also seek to ensure that the patient is exposed to the full range of information needed for shared decision making.
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Research into efforts to engage patients in the assessment of health-care teams is limited. ⋯ Patients perspectives are an important part of assessment in health care and suggest potential areas for improvement through team training.