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Public involvement could usefully inform ethical review but rarely does: what are the implications?

机译:公众参与可以有益地指导道德审查但很少这样做:这意味着什么?

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摘要

Plain English summaryResearchers carrying out research in the NHS in England have to obtain approval for their study from an NHS Research Ethics Committee (REC). Involving the public in research helps to ensure studies are ethically acceptable to the people taking part, and therefore supports the REC review. The form used by RECs asks researchers to describe any involvement that has taken place before the review or any planned for the future. We analysed researchers’ reports of involvement in 2748 applications to RECs in 2014, to assess how well their approaches to involvement are informing the review process. We found that researchers rarely describe involvement in enough detail to help REC members. It is difficult to judge whether previous involvement has shaped the research design in any way, and whether plans for future involvement are meaningful. It also seems that some researchers remain unclear about involvement and its purpose at different stages. This may be severely limiting its impact.So that public involvement can usefully inform REC reviews in future, the Health Research Authority, which oversees RECs, will carry out further work to find out what information RECS need about involvement. This information will be used to change the application form and to develop guidance and training for REC members and the wider research community. Researchers may also benefit from clearer guidance on the value and purpose of involvement at key research stages: early design, data collection and the dissemination of results.
机译:简单的英语摘要在英格兰的NHS中进行研究的研究人员必须获得NHS研究道德委员会(REC)的批准。使公众参与研究有助于确保研究在伦理上被参与的人们接受,因此支持REC审查。 RECs使用的表格要求研究人员描述在审查之前发生的任何参与或未来计划的参与。我们分析了研究人员在2014年参与REC的2748项申请的报告,以评估他们的参与方式对审查过程的通知程度。我们发现研究人员很少描述参与程度足以帮助REC成员。很难判断以前的参与是否以任何方式影响了研究设计,以及未来参与的计划是否有意义。似乎还有些研究者不清楚参与的阶段及其目的。这可能会严重限制其影响。为了使公众参与将来可以对REC审查提供有用的信息,监督REC的卫生研究局将进一步开展工作,以找出RECS需要哪些有关参与的信息。这些信息将用于更改申请表,并为REC成员和更广泛的研究界提供指导和培训。在关键的研究阶段:早期设计,数据收集和结果传播,对参与的价值和目的进行更清晰的指导,研究人员也可能会从中受益。

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