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患者和公众参与（PPI）在临床前脊髓研究中的作用：一项访谈研究。

The role of Patient and public involvement (PPI) in pre-clinical spinal cord research: An interview study.

机构信息

School of Pharmacy and Biomolecular Science, Royal College of Surgeons in Ireland University of Medicine and Health Sciences, Dublin, Ireland.

Department of Anatomy and Regenerative Medicine, Tissue Engineering Research Group (TERG), Royal College of Surgeons in Ireland University of Medicine and Health Sciences, Dublin, Ireland.

出版信息

PLoS One. 2024 Apr 29;19(4):e0301626. doi: 10.1371/journal.pone.0301626. eCollection 2024.

DOI:10.1371/journal.pone.0301626
PMID:38683786
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11057720/
Abstract

BACKGROUND

Patient and public involvement in research (PPI) has many benefits including increasing relevance and impact. While using PPI in clinical research is now an established practice, the involvement of patients and the public in pre-clinical research, which takes place in a laboratory setting, has been less frequently described and presents specific challenges. This study aimed to explore the perspectives of seriously injured rugby players' who live with a spinal cord injury on PPI in pre-clinical research.

METHODS

Semi-structured interviews were conducted via telephone with 11 seriously injured rugby players living with spinal cord injury on the island of Ireland. A purposive sampling approach was used to identify participants. Selected individuals were invited to take part via gatekeeper in a charitable organisation that supports seriously injured rugby players. Interviews were transcribed verbatim and analysed thematically.

FINDINGS

Six themes were identified during analysis: 'appreciating potential benefits of PPI despite limited knowledge', 'the informed perspectives of people living with spinal cord injury can improve pre-clinical research relevance', 'making pre-clinical research more accessible reduces the potential for misunderstandings to occur', 'barriers to involvement include disinterest, accessibility issues, and fear of losing hope if results are negative', 'personal contact and dialogue helps people feel valued in pre-clinical research, and 'PPI can facilitate effective dissemination of pre-clinical research as desired by people living with spinal cord injury.'

CONCLUSION

People affected by spinal cord injury in this study desire further involvement in pre-clinical spinal cord injury research through dialogue and contact with researchers. Sharing experiences of spinal cord injury can form the basis of PPI for pre-clinical spinal cord injury research.

摘要

背景

患者和公众参与研究（PPI）有许多好处，包括提高相关性和影响力。虽然在临床研究中使用 PPI 现在已经是一种既定的做法，但在实验室环境中进行的临床前研究中，患者和公众的参与程度较低，且存在一些特殊的挑战。本研究旨在探讨生活在爱尔兰岛的 11 名患有脊髓损伤的严重受伤橄榄球运动员对临床前研究中的 PPI 的看法。

方法

通过电话对半结构访谈进行了 11 名生活在爱尔兰岛的患有脊髓损伤的严重受伤橄榄球运动员。采用目的抽样方法确定参与者。通过支持严重受伤橄榄球运动员的慈善组织的守门员邀请选定的个人参加。访谈逐字转录并进行主题分析。

结果

在分析过程中确定了六个主题：“尽管知识有限，但仍能理解 PPI 的潜在好处”、“生活在脊髓损伤中的人的知情观点可以提高临床前研究的相关性”、“使临床前研究更容易获得可以减少误解发生的可能性”、“参与的障碍包括不感兴趣、可及性问题以及如果结果为阴性则丧失希望的恐惧”、“个人联系和对话有助于使人们在临床前研究中感到被重视”，以及“PPI 可以促进脊髓损伤临床前研究的有效传播，满足生活在脊髓损伤中的人的需求。”

结论

在这项研究中，脊髓损伤患者希望通过与研究人员的对话和联系，进一步参与临床前脊髓损伤研究。分享脊髓损伤的经验可以作为临床前脊髓损伤研究 PPI 的基础。