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'船上海螺':患者和公众参与研究的时空动态。

'A limpet on a ship': Spatio-temporal dynamics of patient and public involvement in research.

机构信息

King's College London, London, UK.

University of Glasgow, Glasgow, Scotland.

出版信息

Health Expect. 2021 Jun;24(3):810-818. doi: 10.1111/hex.13215. Epub 2021 Mar 21.

Abstract

OBJECTIVE

To understand how current funding expectations that applied health research is undertaken in partnership with research institutions, health service providers and other stakeholders may impact on patient and public involvement (PPI).

BACKGROUND

While there is considerable research on the potential impact of PPI in health research, the processes of embedding PPI in research teams remain understudied. We draw on anthropological research on meetings as sites of production and reproduction of institutional cultures and external contexts to investigate how these functions of meetings may affect the potential contributions of patients, carers and the public in research.

METHODS

We present an ethnography of meetings that draws from a larger set of case studies of PPI in applied health research settings. The study draws on ethnographic observations, interviews with team members, analysis of documents and a presentation of preliminary findings through which feedback from informants was gathered.

RESULTS

We identified four means by which the oversight meetings regulated research and constrained the possibilities for PPI: a logic of 'deliverables' and imagined interlocutors, the performance of inclusion, positioning PPI in an 'elsewhere' of research, and the use of meetings to embed apprenticeship for junior researchers.

CONCLUSIONS

PPI is essentially out of sync from the institutional logic of 'deliverables' constituting research partnerships. Embedding PPI in research requires challenging this logic.

摘要

目的

了解当前应用健康研究与研究机构、医疗服务提供者和其他利益相关者合作的资金预期如何影响患者和公众参与(PPI)。

背景

虽然有大量关于 PPI 在健康研究中的潜在影响的研究,但将 PPI 嵌入研究团队的过程仍未得到充分研究。我们借鉴了关于会议的人类学研究,将会议视为机构文化和外部背景产生和再现的场所,以调查这些会议的功能如何影响患者、照顾者和公众在研究中的潜在贡献。

方法

我们呈现了一次对会议的民族志研究,该研究源自于对应用健康研究环境中 PPI 的更大案例研究集。该研究借鉴了民族志观察、对团队成员的访谈、对文件的分析以及通过初步发现的呈现,通过这些方式收集了信息提供者的反馈。

结果

我们确定了监督会议规范研究并限制 PPI 可能性的四种方式:“可交付成果”和想象中的对话者的逻辑、包容性的表现、将 PPI 置于研究的“其他地方”以及利用会议为初级研究人员提供实习。

结论

PPI 与构成研究伙伴关系的“可交付成果”的机构逻辑本质上不同步。将 PPI 嵌入研究需要挑战这一逻辑。

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