评估患者家属顾问在以患者为导向的研究中的体验。

Evaluating the Patient Family Advisor Experience in Patient-Oriented Research.

作者信息

Flowers Michelle, Gunderson Janet, Hall Dale

机构信息

A patient engagement specialist with SCPOR working out of the Saskatchewan Health Quality Council. Her work focuses on supporting patients and research teams in patient-oriented research projects. She can be contacted at

A patient family advisor with the SCPOR Patient Family Advisory Council and the Strategy for Patient-Oriented Research's (SPOR) Chronic Pain Network. She also volunteers with the Canadian Arthritis Patient Alliance and the Cochrane Collaboration.

出版信息

Healthc Q. 2020 Apr;23(1):28-33. doi: 10.12927/hcq.2020.26142.

DOI:10.12927/hcq.2020.26142

PMID:32249736

Abstract

As part of the Saskatchewan Centre for Patient-Oriented Research (SCPOR)'s commitment to improving the experience of patient and family advisors (PFAs) who engage with local patient-oriented research teams, one of the supports offered is an evaluation that assesses the experiences and effectiveness of PFAs as research team members. In a recent evaluation project, SCPOR used an academically validated questionnaire and a survey co-designed by local PFAs. The results showed that PFAs wanted more frequent updates throughout the research project and greater role clarity. They also reported that the best part of their engagement was feeling like a valued team member.

摘要

作为萨斯喀彻温省患者导向研究中心（SCPOR）致力于改善参与当地患者导向研究团队的患者及家属顾问（PFA）体验的一部分，提供的支持之一是一项评估，该评估旨在评估PFA作为研究团队成员的体验和有效性。在最近的一个评估项目中，SCPOR使用了经过学术验证的问卷以及由当地PFA共同设计的调查。结果显示，PFA希望在整个研究项目中能更频繁地获得进展更新，并且角色能更清晰明确。他们还表示，参与研究最棒的部分是感觉自己是有价值的团队成员。