RT期刊文章SR电子T1患者中心研究：涉及囊性纤维化（CF）患者的模型研究计划JF欧洲呼吸杂志JO EUR RESSIR J FD欧洲呼吸社会SP PA4526 DO 10.1183/13993003188bet官网地址Suppl 63 A1 Bianco，Brooke A1 Patel，Huziafa A1 Shaw Nunez，Emma A1 Brennan，Amanda A1 Kirk，Susan A1 Horsley，Alex YR 2019 UL //www.qdcxjkg.com/content/54/54/54/suppl_63/pa abstract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。 Grant funding was secured for reimbursement of patient travel and time.Results: Repeated individual meetings have now taken place with three patients. 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).