@文章{信息:doi/10.2196/25743,作者=“Aguayo, Gloria A和Goetzinger, Catherine和Scibilia, Renza和Fischer, Aur{\'e}lie和Seuring, Till和Tran,越南- thi和Ravaud, Philippe和Bereczky, Tam{\' A}s和Huiart, Laetitia和Fagherazzi, Guy”,标题=“产生创新研究想法和提高现代流行病学研究中患者和公众参与的方法:回顾、患者观点和实施数字队列研究指南”,期刊=“J Med Internet Res”,年份=“2021”,月份=“12月”,日期=“23”,卷=“23”,数=“12”,页数=“e25743”,关键词=“患者和公众参与;车间;调查;焦点小组;合作设计;数字队列研究;数字流行病学;社交媒体;背景:研究中的患者和公众参与(PPI)旨在通过纳入最终受研究影响的人的观点来提高研究的质量和相关性。 Despite these potential benefits, PPI is rarely included in epidemiology protocols. Objective: The aim of this study is to provide an overview of methods used for PPI and offer practical recommendations for its efficient implementation in epidemiological research. Methods: We conducted a review on PPI methods. We mirrored it with a patient advocate's viewpoint about PPI. We then identified key steps to optimize PPI in epidemiological research based on our review and the viewpoint of the patient advocate, taking into account the identification of barriers to, and facilitators of, PPI. From these, we provided practical recommendations to launch a patient-centered cohort study. We used the implementation of a new digital cohort study as an exemplary use case. Results: We analyzed data from 97 studies, of which 58 (60{\%}) were performed in the United Kingdom. The most common methods were workshops (47/97, 48{\%}); surveys (33/97, 34{\%}); meetings, events, or conferences (28/97, 29{\%}); focus groups (25/97, 26{\%}); interviews (23/97, 24{\%}); consensus techniques (8/97, 8{\%}); James Lind Alliance consensus technique (7/97, 7{\%}); social media analysis (6/97, 6{\%}); and experience-based co-design (3/97, 3{\%}). The viewpoint of a patient advocate showed a strong interest in participating in research. The most usual PPI modalities were research ideas (60/97, 62{\%}), co-design (42/97, 43{\%}), defining priorities (31/97, 32{\%}), and participation in data analysis (25/97, 26{\%}). We identified 9 general recommendations and 32 key PPI-related steps that can serve as guidelines to increase the relevance of epidemiological studies. Conclusions: PPI is a project within a project that contributes to improving knowledge and increasing the relevance of research. PPI methods are mainly used for idea generation. On the basis of our review and case study, we recommend that PPI be included at an early stage and throughout the research cycle and that methods be combined for generation of new ideas. For e-cohorts, the use of digital tools is essential to scale up PPI. We encourage investigators to rely on our practical recommendations to extend PPI in future epidemiological studies. ", issn="1438-8871", doi="10.2196/25743", url="//www.mybigtv.com/2021/12/e25743", url="https://doi.org/10.2196/25743", url="http://www.ncbi.nlm.nih.gov/pubmed/34941554" }
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