Development and formative evaluation of patient research partner involvement in a multi-disciplinary European translational research project.
Development and formative evaluation of patient research partner involvement in a multi-disciplinary European translational research project.
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DOI：
10.1186/s40900-020-0178-7
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发表时间：
2020-01-01
影响因子：
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通讯作者：
Falahee, Marie
中科院分区：
文献类型：
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作者：
Birch, Rebecca;Simons, Gwenda;Falahee, Marie
简单英语摘要：患者和公众参与 (PPI) 提高了健康研究的质量，并确保研究与患者的需求相关。尽管 PPI 在临床和卫生服务研究中越来越明显，但在转化和实验室研究中有效 PPI 的研究文献中却很少有例子。在本文中，我们描述了欧洲多中心项目（EuroTEAM - 关节炎管理中的早期生物标志物）中 PPI 的开发和评估，该项目包括转化研究、基于实验室的研究以及心理社会研究。我们发现，尽管 EuroTEAM 中的大多数 PPI 都以心理社会研究为中心，但实验室研究中也有 PPI 的例子。随着项目的发展，研究人员越来越善于适应 PPI 并识别 PPI 机会。人们普遍认为 PPI 对整个项目产生了积极影响，特别是对公众参与研究的影响。我们得出的结论是，将心理社会研究和基于实验室的研究纳入同一项目促进了研究各个方面的 PPI。在未来的项目中，我们将尝试在项目规划阶段更详细地指定个人 PPI 活动，并更好地适应非英语母语的患者伙伴。 摘要：背景 患者和公众参与 (PPI) 提高了研究质量和相关性，是当代卫生政策的核心。尽管在基础科学和转化科学中 PPI 的例子有限，但 PPI 的价值已在风湿病学研究中得到认可。欧盟 FP7 资助的“EuroTEAM”（关节炎管理中的早期生物标志物）项目旨在开发基于生物标志物的方法来预测类风湿性关节炎的未来发展，并结合社会心理研究来调查“高危”个体对预测测试的看法，并开发有关类风湿性关节炎 (RA) 风险的信息资源。从项目一开始，患者的参与就是 EuroTEAM 的核心。本文的目的是描述 EuroTEAM 中 PPI 的发展，从研究人员和患者研究合作伙伴 (PRP) 的角度形成性评估 PPI 的影响，反思成功和经验教训，并制定指导未来项目的建议。 方法 进行了两次混合方法调查（针对 PRP 和研究人员）和一次电话会议，以评估 PPI 对个人工作包和 EuroTEAM 整体的影响。 结果 对于 PPI 对研究和参与者的经验的积极影响达成了共识。特别强调了 PPI 对研究人员个人发展以及公众有效参与 EuroTEAM 研究的积极影响。研究人员描述了在未来的项目中调整他们的做法以促进 PPI。衍生项目以及 PRP 和研究人员之间持续的合作反映了 PPI 对参与者的价值。尽管也描述了实验室/转化科学中 PPI 的例子，但 PPI 更频繁地融入心理社会研究。 PRP 要求有更多机会为基础科学研究做出有意义的贡献，并就其贡献提供更广泛的反馈。 结论 研究结果用于制定建议，指导患者有效参与未来的类似项目，包括确定 PRP 和研究人员的具体培训要求、在项目规划阶段确定 PRP 重点任务/可交付成果，以及支持所有 PRP 参与。重要的是，EuroTEAM 独特的多学科方法结合了基础科学和心理社会研究，促进了患者对整个项目的参与。
PLAIN ENGLISH SUMMARY: Patient and public involvement (PPI) improves the quality of health research and ensures that research is relevant to patients' needs. Though PPI is increasingly evident in clinical and health services research, there are few examples in the research literature of effective PPI in translational and laboratory-based research. In this paper, we describe the development and evaluation of PPI in a multi-centre European project (EuroTEAM - Towards Early biomarkers in Arthritis Management) that included both translational and laboratory-based and psychosocial research. We found that although most PPI in EuroTEAM was centred around the psychosocial research, there were examples of PPI in the laboratory studies. As the project evolved, researchers became better at accommodating PPI and identifying PPI opportunities. It was generally agreed that PPI had a positive impact on the project overall, particularly on public engagement with the research. We concluded that the inclusion of both psychosocial and laboratory-based research in the same project facilitated PPI across all aspects of the research. In future projects, we would try to specify individual PPI activities in more detail at the project-planning stage, and better accommodate patient partners who are not native speakers of English.ABSTRACT: Background Patient and public involvement (PPI) enhances research quality and relevance and is central to contemporary health policy. The value of PPI has been recognised in rheumatology research, though there are limited examples of PPI in basic and translational science. The EU FP7 funded 'EuroTEAM' (Towards Early biomarkers in Arthritis Management) project was established to develop biomarker-based approaches to predict the future development of rheumatoid arthritis and incorporated psychosocial research to investigate the perceptions of 'at risk' individuals about predictive testing, and to develop informational resources about rheumatoid arthritis (RA) risk. Patient involvement was central to EuroTEAM from the inception of the project. The objective of this paper is to describe the development of PPI in EuroTEAM, formatively assess the impact of PPI from the perspectives of researchers and patient research partners (PRPs), reflect on successes and lessons learned, and formulate recommendations to guide future projects.Methods Two mixed-methods surveys (for PRPs and researchers) and a teleconference were undertaken to assess the impact of PPI on individual work packages and on EuroTEAM overall.Results There was consensus about the positive impact of PPI on the research and on the experiences of those involved. In particular, the positive impact of PPI on the personal development of researchers, and on effective public engagement with EuroTEAM research were highlighted. Researchers described adapting their practice in future projects to facilitate PPI. Spin-off projects and ongoing collaborations between PRPs and researchers reflected the value of PPI to participants. PPI was more frequently integrated in psychosocial research, though examples of PPI in laboratory/translational science were also described. PRPs asked for more opportunities to contribute meaningfully to basic scientific research and for more extensive feedback on their contributions.Conclusions The findings were used to formulate recommendations to guide effective involvement of patients in future similar projects, including identifying specific training requirements for PRPs and researchers, the identification of PRP focused tasks/deliverables at the project planning stage, and supporting access to involvement for all PRPs. Importantly, the distinctive multidisciplinary approach of EuroTEAM, incorporating both basic science and psychosocial research, facilitated patient involvement in the project overall.