Patient and public engagement in health-related quality of life and patient-reported outcomes research: what is important and why should we care? Findings from the first ISOQOL patient engagement symposium
Patient and public engagement in health-related quality of life and patient-reported outcomes research: what is important and why should we care? Findings from the first ISOQOL patient engagement symposium
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DOI：
10.1007/s11136-014-0796-3
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发表时间：
2015-05-01
影响因子：
3.5
通讯作者：
Staniszewska, Sophie
中科院分区：
文献类型：
--
作者：
Haywood, Kirstie;Brett, Jo;Staniszewska, Sophie
近年来，国际上对患者和公众积极参与卫生服务研究的兴趣日益浓厚。然而，关于PE在健康相关生活质量（HRQL）和患者报告结局（PRO）研究中的程度或影响的证据有限。因此，2013年10月，国际生活质量研究协会（ISOQOL）举办了第一次研讨会，旨在探索体育在这一领域的潜力。“世界咖啡馆”的形式鼓励围坐在圆桌上的小组探讨三个“菜单”问题。意见、意见和关切都被收集起来。进行了专题分析，并列出了关键主题。60名与会者参加了持续90分钟的“体育咖啡吧”。交流了各种各样的经验，大多数参与者对体育的潜力持积极态度。确定了方法、障碍和解决办法的异同。然而，一个关键的信息集中在如何在整个研究过程中有效地与患者接触的不确定性上。此外，缺乏证明PE影响的证据基础是一个重大问题。没有病人参加会议。本研究是国际上首次在HRQL和PRO研究中探索PE。讨论强调，在缺乏良好实践指南的情况下，需要一个框架或工具包来将PE嵌入HRQL和PRO研究中。此外，该框架应支持对体育教育影响的严格评估。ISOQOL应该在推动这些想法方面发挥重要作用，积极与有耐心的合作伙伴合作，共同制定ISOQOL未来的PE战略。
Recent years have witnessed growing international interest in the active involvement, or engagement [patient engagement (PE)], of patients and the public in health services research. However, there is limited evidence of the extent or impact of PE in health-related quality of life (HRQL) and patient-reported outcomes (PRO) research. Therefore, in October 2013, the International Society for Quality of Life research (ISOQOL) hosted its first symposium, which sought to explore the potential for PE in this field.A 'World Caf,' format encouraged the exploration of three 'menu' questions' in small groups at round tables. Views, opinions and concerns were captured. A thematic analysis was undertaken, and key themes listed.Sixty conference attendees participated in the 'PE Caf,', which lasted for 90 min. A diversity of experience was communicated, with most participants positive about the potential for PE. Similarities and differences in approaches, barriers and solutions were identified. However, a key message focused on the uncertainty about how to effectively engage with patients throughout the research process. Moreover, the lack of evidence-base demonstrating the impact of PE was a significant concern. No patient partners participated in the meeting.This study describes the first international exploration of PE in HRQL and PRO research. Discussions highlighted that, in the absence of good practice guidelines, a framework or toolkit of how to embed PE within HRQL and PRO research is required. Moreover, this framework should support the rigorous evaluation of PE impact. ISOQOL should be instrumental in taking these ideas forward, actively engaging with patient partners towards shaping a future ISOQOL PE strategy.