@Article {Biancopa4526，作者= {Bianco，Brooke和Patel，Huziafa和Shaw Nunez，Emma和Brennan和Brennan，Amanda和Kirk和Kirk，Susan和Horsley，Alex}，title = {患者中心研究：涉及半纤维化（CF）的模型研究计划的患者}，音量= {54}，number = {Suppt 63}，Elocation-id = {pa4526}，年= {2019}，doi = {10.1183/13993003.Congress-2019.pa4526}，Publisher = {188bet官网地址欧洲呼吸社会}，摘要= {背景：患者的参与对于任何未来研究的成功至关重要。詹姆斯·林德联盟（James Lind Alliance）优先设定伙伴关系确定了与CF患者最直接相关的研究问题。持续的患者和公众（PPI）将其进一步发展，并提供了与患者进行研究的机会。持续评估对于衡量影响是必要的。在这里，我们报告了P​​PI在研究计划阶段的应用。目标：1让患者参与CF男性父亲身份的混合方法研究。2报道PPI在整个研究的生命中的影响。讨论了PPI的关键原则。由于跨感染的风险，患者无法直接接触彼此，这是将PPI纳入CF研究的特殊挑战。保证了赠款资金以偿还患者的旅行和时间。回报：现在已经与三名患者进行了重复的个人会议。 Key principles and features have been co-established: sharing power; including all perspectives; respecting and valuing knowledge; reciprocity; building and maintaining relationships; roles \& expectations; personal development; flexibility in plan; and evaluation. A method to incorporate PPI into the study has been jointly developed.Conclusion: PPI positively impacts the research planning phase. Patients have helped develop research that is timely, addresses meaningful questions and that they are willing to take part in. Co-design is possible even when infection control limits patient-patient interactions.FootnotesCite this article as: European Respiratory Journal 2019; 54: Suppl. 63, PA4526.This is an ERS International Congress abstract. No full-text version is available. Further material to accompany this abstract may be available at www.ers-education.org (ERS member access only).}, issn = {0903-1936}, URL = {//www.qdcxjkg.com/content/54/suppl_63/PA4526}, eprint = {//www.qdcxjkg.com/content}, journal = {European Respiratory Journal} }