Between funder requirements and 'jobbing scientists': the evolution of patient and public involvement in a mental health biomedical research centre - a qualitative study.
Between funder requirements and 'jobbing scientists': the evolution of patient and public involvement in a mental health biomedical research centre - a qualitative study.
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DOI：
10.1186/s40900-020-00185-7
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发表时间：
2020-01-01
影响因子：
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通讯作者：
Papoulias, Stan Constantina
中科院分区：
文献类型：
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作者：
Evans, Joanne;Papoulias, Stan Constantina
背景：在英国，有一个强大的驱动器对病人和公众参与（PPI）的健康研究。其好处包括提高研究的质量、相关性和可接受性，增强服务用户的能力、自尊和价值。组织环境可以显着影响PPI的操作。研究强调了临床医生，研究人员和服务用户之间的权力不对称。对权力分享、象征主义和同化到现有文化中的抵制表明，在卫生研究环境中正在运作一种咨询性的技术官僚形式的PPI。本研究的目的是探讨PPI的发展在一个伦敦的心理健康生物医学研究中心（BRC）在一段时间内的10年从initiation.METHODS：本定性研究比较了数据从52个组织文件和16个半结构化的采访与工作人员和服务用户与PPI内的莫兹利BRC。采用归纳专题分析法对数据进行了分析。研究设计，数据收集，分析和写了由服务用户researchers.RESULTS：我们的分析显示了图片的活动和接受PPI，其与更广泛的BRC研究议程，逐步参与服务用户的治理，并在研究过程中的协作文化的发展。该组织中受薪服务用户研究人员的存在是这一进展的关键。然而，生产者保护协会仍然是地方性的，资源不足，不愿意改变工作做法，导致人们认为它只是象征性的。服务用户面临着相互冲突的期望，并预计同化，而不是挑战组织的“生物医学领域”。结论：服务用户的研究人员可能会发挥关键作用，建立PPI在一个科学的，分层的研究环境。采取更民主的参与方式将在已经开展的良好工作的基础上更进一步，并有助于改变文化和研究进程。然而，这样做需要对卫生研究的供资和政策环境进行相当大的改变。
BACKGROUND: In the UK, there has been a strong drive towards patient and public involvement (PPI) in health research. Its benefits include improvements in the quality, relevance and acceptability of research, and empowerment, self-respect and value for service users. Organisational context can significantly influence the operationalisation of PPI. Research has highlighted power asymmetries between clinicians, researchers and service users. A resistance to power sharing, tokenism and assimilation into the existing culture suggest that a consultative, technocratic form of PPI is operating within health research settings. The aim of the study was to explore the development of PPI within a London based mental health biomedical research centre (BRC) over a period of 10 years from its inception.METHODS: This qualitative study compared data from 52 organisational documents and 16 semi-structured interviews with staff and service users associated with PPI within the Maudsley BRC. The data were analysed using inductive thematic analysis. Study design, data collection, analysis and write up were conducted by service user researchers.RESULTS: Our analysis showed a picture of increasing activity and acceptance of PPI, its alignment with the broader BRC research agenda, progressive involvement of service users in governance, and the development of a collaborative culture in research processes. The presence of salaried service user researchers in the organisation was key to this progress. However, PPI remained localised and under resourced and there was a reluctance to change working practices which resulted in perceptions of tokenism. Service users faced conflicting expectations and were expected to assimilate rather than challenge the organisation's 'biomedical agenda'.CONCLUSIONS: Service user researchers may play a key role in establishing PPI in a scientific, hierarchical research environment. Adoption of a more democratic approach to involvement would build on the good work already being done and help to transform the culture and research processes. However, such an adoption requires considerable changes to the funding and policy environment orienting health research.