Collins Karen, Boote Jonathan, Ardron David, Gath Jacqui, Green Tracy, Ahmedzai Sam H
Faculty of Health and Wellbeing, Centre for Health and Social Care Research, Sheffield Hallam University, Sheffield, UK.
Centre for Research into Primary and Community Care, University of Hertfordshire, College Lane, Hatfield, Hertfordshire, UK.
BMJ Support Palliat Care. 2015 Jun;5(2):203-6. doi: 10.1136/bmjspcare-2014-000750. Epub 2014 Sep 24.
Patient and public involvement (PPI) has become an established theme within the UK health research policy and is recognised as an essential force in the drive to improve the quality of services and research. These developments have been particularly rapid in the cancer field.
This paper outlines a model of PPI in research (known as the North Trent Cancer Research Network Consumer Research Panel, NTCRN CRP; comprising 38 cancer and palliative care patients/carers) and the key benefits and challenges to effective PPI in cancer research.
The PPI model has become a sustainable, inclusive and effective way of implementing PPI within the cancer context. Challenges include (1) a lack of time and funding available to support the PPI model; (2) tensions between different stakeholder groups when developing and conducting health research; (3) panel members finding it difficult to effectively integrate into research meetings when their role and contribution is not made clear at the outset or when unfamiliar language and jargon are used and not explained; (4) some professionals remain unclear about the role and practical implications of PPI in research. However, notwithstanding its financial and organisational challenges, the way that the NTCRN CRP is supported has provided a solid base for it to flourish.
PPI provides considerable opportunities for patients and the public to work collaboratively with professionals to influence the cancer research agenda, with the contribution of PPI to the research process being integral to the entire process from the outset, rather than appended to it.
患者及公众参与（PPI）已成为英国卫生研究政策中的既定主题，并被视为推动改善服务和研究质量的重要力量。这些发展在癌症领域尤为迅速。
本文概述了一种研究中的PPI模式（称为北特伦特癌症研究网络消费者研究小组，NTCRN CRP；由38名癌症及姑息治疗患者/护理人员组成）以及癌症研究中有效实施PPI的主要益处和挑战。
PPI模式已成为在癌症背景下实施PPI的一种可持续、包容且有效的方式。挑战包括：（1）缺乏支持PPI模式的时间和资金；（2）在开展卫生研究时不同利益相关者群体之间存在紧张关系；（3）如果小组成员的角色和贡献从一开始就不明确，或者使用了陌生的语言和行话且未作解释，他们会发现难以有效融入研究会议；（4）一些专业人员仍不清楚PPI在研究中的作用及实际影响。然而，尽管存在财务和组织方面的挑战，但NTCRN CRP获得支持的方式为其蓬勃发展提供了坚实基础。
PPI为患者和公众提供了大量机会，使其能够与专业人员合作以影响癌症研究议程，PPI对研究过程的贡献从一开始就是整个过程不可或缺的一部分，而非附加于其上。
