%0期刊文章%a bianco,brooke%patel,huziafa%a shaw nunez,emma%a brennan,amanda%kirk,susan%a hssley,Alex%T患者中心研究:涉及囊性纤维化(CF)的模型(CF)研究计划中的患者D 2019%R 10.1183/13993003.Congress-2019.PA4526%J欧洲呼吸期Journal%P PA4526%V 54%N Suppl 63%X背景:患者的参与是任何未来研究的成功。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). %U