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公众参与初级卫生研究设计阶段:案例分析叙述性综述。

Public involvement at the design stage of primary health research: a narrative review of case examples.

机构信息

Research Design Service for Yorkshire and the Humber, University of Sheffield, Regent Court, 30 Regent Street, Sheffield S1 4DA, United Kingdom.

出版信息

Health Policy. 2010 Apr;95(1):10-23. doi: 10.1016/j.healthpol.2009.11.007. Epub 2009 Dec 5.

DOI:10.1016/j.healthpol.2009.11.007
PMID:19963299
Abstract

OBJECTIVE

To review published examples of public involvement in research design, to synthesise the contributions made by members of the public, as well as the identified barriers, tensions and facilitating strategies.

DESIGN

Systematic literature search and narrative review.

FINDINGS

Seven papers were identified covering the following topics: breast-feeding, antiretroviral and nutrition interventions; paediatric resuscitation; exercise and cognitive behavioural therapy; hormone replacement therapy and breast cancer; stroke; and parents' experiences of having a pre-term baby. Six papers reported public involvement in the development of a clinical trial, while one reported public involvement in the development of a mixed methods study. Group meetings were the most common method of public involvement. Contributions that members of the public made to research design were: review of consent procedures and patient information sheets; outcome suggestions; review of acceptability of data collection procedures; and recommendations on the timing of potential participants into the study and the timing of follow-up. Numerous barriers, tensions and facilitating strategies were identified.

CONCLUSIONS

The issues raised here should assist researchers in developing research proposals with members of the public. Substantive and methodological directions for further research on the impact of public involvement in research design are set out.

摘要

目的

回顾已发表的公众参与研究设计的实例,综合公众成员的贡献,以及已确定的障碍、紧张局势和促进策略。

设计

系统的文献搜索和叙述性评论。

发现

确定了七篇论文,涵盖以下主题:母乳喂养、抗逆转录病毒和营养干预;儿科复苏;运动和认知行为疗法;激素替代疗法和乳腺癌;中风;以及父母对早产儿的经历。六篇论文报告了公众参与临床试验的制定,而一篇论文报告了公众参与混合方法研究的制定。小组会议是公众参与的最常见方法。公众成员对研究设计的贡献包括:审查同意程序和患者信息表;结果建议;审查数据收集程序的可接受性;以及对潜在参与者进入研究的时间和随访时间的建议。确定了许多障碍、紧张局势和促进策略。

结论

这里提出的问题应该有助于研究人员与公众一起制定研究提案。为进一步研究公众参与研究设计对研究的影响提出了实质性和方法性的方向。

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