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促进肝病患者为中心的研究范式:肝移植患者参与计划。

A paradigm for fostering patient-centered research in liver disease: The liver transplant patient-engagement program.

机构信息

Department of Medicine, Division of Digestive and Liver Diseases, University of Texas Southwestern (UTSW) Medical Center, Dallas, Texas, USA.

Division of Gastroenterology and Hepatology, Department of Medicine, University of Pennsylvania Perelman School of Medicine, Philadelphia, Pennsylvania, USA.

出版信息

Hepatol Commun. 2023 Mar 17;7(4). doi: 10.1097/HC9.0000000000000053. eCollection 2023 Apr 1.

DOI:10.1097/HC9.0000000000000053
PMID:36930873
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC10027036/
Abstract

BACKGROUND

Many federal funding and regulatory agencies require patient engagement to conduct patient-centered research and drug development. We developed a liver transplantation patient-engagement program, which can serve as a model for bringing the patient perspective to digestive diseases research.

METHODS

Six liver transplantation patient-engagement program advisors completed training in patient engagement; participated in several virtual sessions; and completed postsession surveys.

RESULTS

Qualitative and quantitative results elucidated patient-centered liver transplantation study outcomes and barriers/facilitators to conducting clinical research. Group satisfaction was very high.

CONCLUSIONS

The liver transplantation patient-engagement program model provides a paradigm for how to engage patients in the formative steps of patient-centered clinical research.

摘要

背景

许多联邦资助和监管机构要求患者参与,以进行以患者为中心的研究和药物开发。我们开发了一个肝移植患者参与计划,该计划可以作为将患者视角引入消化疾病研究的模式。

方法

六名肝移植患者参与计划顾问完成了患者参与培训;参加了几次虚拟会议;并完成了会议后的调查。

结果

定性和定量结果阐明了以患者为中心的肝移植研究结果,以及开展临床研究的障碍/促进因素。小组满意度非常高。

结论

肝移植患者参与计划模式提供了一个范例,说明如何让患者参与以患者为中心的临床研究的形成阶段。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/f2ac/10027036/ed799680f797/hc9-7-e0053-g001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/f2ac/10027036/ed799680f797/hc9-7-e0053-g001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/f2ac/10027036/ed799680f797/hc9-7-e0053-g001.jpg

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