University of Bristol and University Hospitals Bristol and Weston NHS Foundation Trust, Bristol, United Kingdom.
Musculoskeletal Research Unit, Translational Health Sciences, Bristol Medical School, University of Bristol, Bristol, United Kingdom.
PLoS One. 2021 Dec 1;16(12):e0260617. doi: 10.1371/journal.pone.0260617. eCollection 2021.
Patient and public involvement work (PPI) is essential to good research practice. Existing research indicates that PPI offers benefits to research design, conduct, communication, and implementation of findings. Understanding how PPI works and its value helps to provide information about best practice and highlight areas for further development. This study used a values-based approach to reporting PPI at a Research Unit focused on musculoskeletal conditions within a UK medical school.
The study was conducted between October 2019 and January 2020 using Gradinger's value system framework as a theoretical basis. The framework comprises three value systems each containing five clusters. All PPI members and researchers who had attended PPI groups were invited to participate. Participants completed a structured questionnaire based on the value system framework; PPI members also provided further information through telephone interviews. Data were deductively analysed using a framework approach with data mapped onto value systems.
Twelve PPI members and 17 researchers took part. Views about PPI activity mapped onto all three value systems. PPI members felt empowered to provide their views, and that their opinions were valued by researchers. It was important to PPI members that they were able to 'give back' and to do something positive with their experiences. Researchers would have liked the groups to be more representative of the wider population, patients highlighted that groups could include more younger members. Researchers recognised the value of PPI, and the study highlighted areas where researchers members might benefit from further awareness.
Three areas for development were identified: (i) facilitating researcher engagement in training about the value and importance of PPI in research; (ii) support for researchers to reflect on the role that PPI plays in transparency of healthcare research; (iii) work to further explore and address aspects of diversity and inclusion in PPI.
患者和公众参与工作（PPI）是良好研究实践的基础。现有研究表明，PPI 为研究设计、进行、交流和研究结果的实施带来了益处。了解 PPI 如何发挥作用及其价值有助于提供有关最佳实践的信息，并突出进一步发展的领域。本研究采用基于价值观的方法，在英国一所医学院专注于肌肉骨骼疾病的研究单位报告 PPI。
该研究于 2019 年 10 月至 2020 年 1 月进行，使用 Gradinger 的价值体系框架作为理论基础。该框架包含三个价值体系，每个体系包含五个聚类。邀请所有 PPI 成员和参加过 PPI 小组的研究人员参与。参与者根据价值体系框架完成了一份结构化问卷；PPI 成员还通过电话访谈提供了更多信息。使用框架方法对数据进行演绎分析，将数据映射到价值体系上。
12 名 PPI 成员和 17 名研究人员参与了研究。关于 PPI 活动的观点映射到了所有三个价值体系。PPI 成员感到有能力表达自己的观点，并且他们的意见受到研究人员的重视。对 PPI 成员来说，重要的是他们能够“回馈”并利用他们的经验做一些积极的事情。研究人员希望小组能更能代表更广泛的人群，患者强调小组可以包括更多的年轻成员。研究人员认识到 PPI 的价值，该研究强调了研究人员成员可能需要进一步提高认识的领域。
确定了三个发展领域：（i）促进研究人员参与有关 PPI 在研究中的价值和重要性的培训；（ii）支持研究人员反思 PPI 在医疗保健研究透明度方面所起的作用；（iii）努力进一步探索和解决 PPI 中的多样性和包容性方面的问题。
