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        Research

        Development of the Consumer Involvement & Engagement Toolkit: a digital resource to build capacity for undertaking patient-centred clinical trials in Australia

        This paper describes the novel approach to developing a toolkit to support meaningful consumer involvement in clinical trials in Australia to help guide others in considering the development of similar resources.The toolkit aims to support greater consumer involvement in shaping how clinical research is prioritised, designed and conducted. Type of program or service: A working group of researchers, research organisations and consumers was established to co-develop the Consumer Involvement and Engagement Toolkit (the 'Toolkit'), a digital resource to guide researchers and organisations regarding consumer involvement in clinical trials. ...

        Research

        A snapshot of consumer engagement in clinical trials in Australia: results of a national survey of clinical trial networks and research organisations

        Little is known about the extent, perceptions or experiences of consumers involved in clinical trials across Australia. The purpose of this National study was to better understand the activity and perceptions of clinical trial networks (CTNs), research co-ordinating centres and their consumers, around consumer involvement in clinical trials. ...

        Research

        Involving consumers and the community in the development of a diagnostic instrument for fetal alcohol spectrum disorders in Australia

        Australia's commitment to consumer and community participation in health and medical research has grown over the past decade. ...

        Research

        Identifying the asthma research priorities of people with asthma, their carers and other stakeholders

        People living with asthma, their carers, clinicians and policymakers are the end-users of research and need research that address their individual healthcare needs. We aimed to understand the research priorities of end-users of asthma research. ...

        Research

        Experiences of Caregivers and At-Risk Children Enrolled in a Prospective Pregnancy-Birth Cohort Study into the Causes of Type 1 Diabetes: The ENDIA Study

        We sought research experiences of caregivers and their children were enrolled in the Environmental Determinants of Islet Autoimmunity (ENDIA) study. ...

        Research

        Participant and caregiver perspectives on health feedback from a healthy lifestyle check

        The usual output following health consultations from paediatric services is a clinical letter to the referring professional or primary care provider, with a copy sent to the patient's caregiver. There is little research on how patients and caregivers perceive the letter content. ...

        Research

        Collaborating with consumers: the key to achieving statutory notification for birth defects and cerebral palsy in Western Australia

        The Western Australian Birth Defects Registry and the Western Australian Cerebral Palsy Register used multiple sources of voluntary notification without... ...

        Research

        Acceptability of integrating traditional tuberculosis care with modern healthcare services in the Amhara Regional State of Northwest Ethiopia: A qualitative study

        Many people with tuberculosis (TB) rely solely on traditional healthcare services. Integrating traditional healthcare with modern healthcare services can increase access, quality, continuity, consumer satisfaction, and efficiency. However, successful integration of traditional healthcare with modern healthcare services requires stakeholder acceptance. ...

        Research

        Improving the capacity of researchers and bereaved parents to co-design and translate stillbirth research together

        Working with bereaved parents in co-designed stillbirth research, policy and practice is essential to improving care and outcomes.  ...

        Research

        Unpacking the application of Q methodology for use in occupational therapy research

        Occupational therapy research has not fully utilized available research methods when exploring occupational therapists' views on specific interventions and service provision nor when exploring consumer priorities and the impact of occupational therapy services. Q methodology, a quantitative method for the systematic assessment of qualitative data, is an approach that can be used to examine viewpoints related to occupational therapy. ...

        Research

        A critical discussion of pediatric gender measures to clarify the utility and purpose of “measuring” gender

        Pediatric gender clinics and researchers commonly use scales to measure different dimensions of gender (e.g. identity, dysphoria, satisfaction). There has been little investigation into the relevance and consumer acceptability of these scales within contemporary understandings and experiences of gender.  ...

        Research

        Improving Wellbeing for Young People Living with Rheumatic Heart Disease: A peer support program through Danila Dilba Health Service

        Rosemary Wyber R MBChB MPH FRACGP PhD Senior Research Fellow Senior Research Fellow Dr Rosemary Wyber is a general practitioner and researcher focusing on Aboriginal and Torres Strait Islander cardiovascular health. Dr Wyber completed her medical ...

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