Balancing perspectives on the sentinel node.
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Biomedical subjects
Publications and source records attributed to Hazel Thornton.
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The pace of active involvement of patients in clinical research has increased over the last 10-15 years. Advocacy for this engagement between patients and health professionals is briefly traced, based on the author's experiences both as an independent advocate and as co-founder and chairman (1995-1999) of the Consumers' Advisory Group for Clinical Trials (CAG-CT). A brief history is outlined. As the benefits and minor drawbacks of collaborative working have become increasingly evident, attitudes have changed and methodologies have developed. A new professionalism in relationships with doctors is being sought: common vocabularies need to be defined. Some research governance problems are identified: forward thinking to solve them is advocated.
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OBJECTIVE: This paper offers 'consumer-led' reflections by steering group members of a patient-centred research study involving consumer advocates, patients' associations and patients, throughout the whole study, from pre- to post-study phases. ORIGINAL STUDY DESIGN: The study: 'Shared decision making and risk communication in general practice' incorporated systematic reviews, psychometric evaluation of outcome measures, and quantitative, qualitative and health economic analyses of a cluster randomized trial of professional skill development, all informed by consumer and patient engagement. SETTING AND PARTICIPANTS: The work was produced by a wide collaboration led by researchers from the Department of General Practice, University of Wales College of Medicine, Cardiff, including a consumers' advisory group and a patients' association. The study participants were 20 general practitioners from Gwent, their practice staff, and almost 800 patients at these practices. DISCUSSION: Consumers and patients contributed to several stages of the research from inception and design, securing of funding, implementation of the protocol, and interpretation and dissemination of the findings. 'Patient involvement' research initiatives that include an equally wide variety of 'user' participants as 'health-professional' participants, accountable to a 'Health in Partnership' funded project, require a user-led viewpoint to be presented and disseminated. This paper presents reflections on the processes of the research, the interpretations of study findings by the involved parties, and notes how this model is fundamental to effective research in the field of patient-centred health care if future practice, policy and research are to change.
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