'Is it worth doing?' Measuring the impact of patient and public involvement in research.
'Is it worth doing?' Measuring the impact of patient and public involvement in research.
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DOI：
10.1186/s40900-015-0008-5
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发表时间：
2015-01-01
影响因子：
--
通讯作者：
Staley, Kristina
中科院分区：
文献类型：
--
作者：
Staley, Kristina
摘要：目前关于患者/公众参与对研究的影响的争论主要集中在缺乏经验数据上。虽然一些系统性的文献综述报告了参与对研究和参与者产生影响的各种方式，但这一证据被批评为薄弱和轶事。有人认为，仍然需要强有力的证据。本次审查反映了使用量化方法来评估影响。它的结论是，由于没有充分注意参与的背景和方式，统计证据被削弱了。然而，如果科学（系统的、定量的、经验的）方法的设计考虑到这些因素，它们可能不会产生超出原始背景的有用知识。因此，这种做法可能不会提高我们对参与何时、为何以及如何产生作用的理解。在研究人员与患者/公众合作的个人研究项目的背景下，研究人员经常获得有关健康状况的生活的“新”知识。这种新的理解可以被描述为经验性知识--"情境中的知识"--研究人员通过与患者/公众合作的直接经验获得。在此基础上，研究人员对他们的经验的描述可能提供了一个洞察力和学习影响他人的来源，就像病人的经验有助于塑造研究一样。可以通过提供更多关于背景和机制的细节来改进这些说明。影响参与结果的最重要的背景因素之一是研究人员本身以及他们开始时的技能，假设，价值观和优先事项。在任何研究项目的开始，研究人员“不知道他们不知道什么”，直到他们涉及患者/公众。这意味着参与任何特定项目的影响都是不可预测的。问题的答案是"参与值得吗？永远都是"看情况"对影响结果的背景和机制因素的进一步探索可以为研究人员提供更强的指导，但可能永远无法准确预测任何具体的影响。到目前为止公布的证据被批评为薄弱和轶事。有些人认为，我们需要从参与的科学研究中获得强有力的证据。在这篇评论中，我考虑了使用统计方法测量影响的例子。我的结论是，统计证据是薄弱的，如果研究不考虑的背景下，参与发生的方式，它是这样做。考虑到这一点的研究使我们更加相信，参与确实对该特定项目产生了影响。它们没有告诉我们同样的影响是否会以同样的方式发生在其他项目中，因此价值有限。研究人员通过与患者和公众合作的直接经验来了解参与。这是“背景知识”或“洞察力”，与患者通过直接体验健康状况获得专业知识的方式相同。这意味着研究人员对参与的详细描述已经为其他人提供了有价值的学习，就像患者的见解有助于塑造研究一样。然而，参与的影响总是有些不可预测的，因为在任何项目开始时，研究人员“不知道他们不知道什么”-他们不知道他们可能会遇到什么问题，直到患者/公众告诉他们。
ABSTRACT: Much of the current debate around the impact of patient/public involvement on research focuses on the lack of empirical data. While a number of systematic literature reviews have reported the various ways in which involvement makes a difference to research and the people involved, this evidence has been criticised as being weak and anecdotal. It is argued that robust evidence is still required. This review reflects on the use of quantitative approaches to evaluating impact. It concludes that the statistical evidence is weakened by not paying sufficient attention to the context in which involvement takes place and the way it is carried out. However, if scientific (systematic, quantitative, empirical) approaches are designed in a way to take these factors into account, they might not generate knowledge that is useful beyond the original context. Such approaches might not therefore enhance our understanding of when, why and how involvement makes a difference. In the context of individual research projects where researchers collaborate with patients/the public, researchers often acquire 'new' knowledge about life with a health condition. This new understanding can be described as experiential knowledge-'knowledge in context'-that researchers gain through direct experience of working with patients/the public. On this basis, researchers' accounts of their experience potentially provide a source of insight and learning to influence others, in the same way that the patient experience helps to shape research. These accounts could be improved by increasing the detail provided about context and mechanism. One of the most important contextual factors that influence the outcome of involvement is the researchers themselves and the skills, assumptions, values and priorities they start with. At the beginning of any research project, the researchers 'don't know what they don't know' until they involve patients/the public. This means that the impact of involvement within any particular project is somewhat unpredictable. The answer to the question 'Is involvement worth doing?' will always be 'It depends'. Further exploration of the contextual and mechanistic factors which influence outcomes could give a stronger steer to researchers but may never accurately predict any specific impact.PLAIN ENGLISH SUMMARY: In recent years, there has been considerable interest in finding out what difference patient and public involvement makes to research projects. The evidence published so far has been criticised for being weak and anecdotal. Some people argue we need robust evidence of impact from scientific studies of involvement. In this review, I consider examples of where impact has been measured using statistical methods. I conclude that the statistical evidence is weak, if the studies do not consider the context in which involvement takes place and the way that it is done. Studies designed to take this into account give us more confidence that the involvement did make a difference to that particular project. They do not tell us whether the same impact will occur in the same way in other projects and therefore have limited value. Researchers gain an understanding of involvement through their direct experience of working with patients and the public. This is 'knowledge in context' or 'insight' gained in the same way that patients gain expertise through their direct experience of a health condition. This means that detailed accounts of involvement from researchers already provide valuable learning to others, in the same way that patients' insights help shape research. However, the impact of involvement will always be somewhat unpredictable, because at the start of any project researchers 'don't know what they don't know'-they do not know precisely what problems they might anticipate, until the patients/public tell them.