Thornton Hazel, Edwards Adrian, Elwyn Glyn
Department of Epidemiology and Public Health, University of Leicester, Leicester, UK.
Health Expect. 2003 Sep;6(3):189-97. doi: 10.1046/j.1369-6513.2003.00231.x.
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.
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.
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.
本文呈现了以患者为中心的研究指导小组成员的“消费者主导”反思。该研究涵盖消费者倡导者、患者协会和患者，涉及从研究前到研究后的整个阶段。
“全科医疗中的共同决策与风险沟通”研究纳入了系统评价、结果测量的心理测量评估，以及专业技能发展整群随机试验的定量、定性和健康经济分析，所有这些均受到消费者和患者参与的影响。
这项工作是由威尔士大学医学院全科医学系的研究人员牵头进行的广泛合作成果，其中包括一个消费者咨询小组和一个患者协会。研究参与者包括来自格温特郡的20名全科医生及其执业人员，以及这些诊所的近800名患者。
消费者和患者参与了研究的多个阶段，从研究的启动和设计、资金的获取、方案的实施，到研究结果的解读与传播。“患者参与”研究倡议包含与“健康专业人员”参与者数量相当的各类“用户”参与者，由“伙伴关系中的健康”资助项目负责，需要呈现并传播用户主导的观点。本文对研究过程、相关方对研究结果的解读进行了反思，并指出如果未来的实践、政策和研究要有所改变，这种模式对于以患者为中心的医疗保健领域的有效研究至关重要。
