研究患者参与如何影响研究:混合方法研究。

IF 3.4 3区 医学 Q1 HEALTH CARE SCIENCES & SERVICES
Deborah A Marshall, Nitya Suryaprakash, Danielle C Lavallee, Tamara L McCarron, Sandra Zelinsky, Karis L Barker, Gail MacKean, Maria J Santana, Paul Moayyedi, Stirling Bryan
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引用次数: 0

摘要

背景:有证据表明,患者参与研究(PE)对患者和研究人员都有价值。然而,关于患者参与对整个研究过程的影响以及研究参与的结果的研究证据却很少。我们的研究旨在补充这方面的证据:我们采用聚合混合方法设计来指导调查数据和观察数据的整合,以评估患者研究伙伴(PRP)、临床医生和研究人员组成的两个小组中 PE 的影响。患者研究伙伴领导一个小组(PLG),学术研究人员领导另一个小组(RLG)。两组都有相同的研究问题,任务是设计并开展一项与炎症性肠病 (IBD) 相关的患者偏好研究。我们在三个时间点使用了经过验证的评估工具,并观察了进行 IBD 研究的两个小组的患者参与情况:结果:两个小组中的患者参与人都承担了许多操作角色,并影响了 IBD 相关定性研究的所有阶段:启动、设计、实施和知识转化。项目实施者进一步明确了研究设计、目标人群、纳入-排除标准、数据收集方法和结果。项目实施者帮助落实项目问题、开发研究材料和数据收集工具、收集数据,并以相关和易于理解的方式向患者群体展示数据。协作伙伴关系的协同作用促成了两个以患者为中心、有意义、可理解、合法、严谨、适应性强、可行、合乎道德、透明、及时和可持续的项目:结论:患者和研究人员的合作和有意义的参与可以影响定性研究的各个阶段,包括设计、方法和产出。
本文章由计算机程序翻译,如有差异,请以英文原文为准。

Studying How Patient Engagement Influences Research: A Mixed Methods Study.

Studying How Patient Engagement Influences Research: A Mixed Methods Study.

Background: There is evidence supporting the value of patient engagement (PE) in research to patients and researchers. However, there is little research evidence on the influence of PE throughout the entire research process as well as the outcomes of research engagement. The purpose of our study is to add to this evidence.

Methods: We used a convergent mixed method design to guide the integration of our survey data and observation data to assess the influence of PE in two groups, comprising patient research partners (PRPs), clinicians, and researchers. A PRP led one group (PLG) and an academic researcher led the other (RLG). Both groups were given the same research question and tasked to design and conduct an inflammatory bowel disease (IBD)-related patient preference study. We administered validated evaluation tools at three points and observed PE in the two groups conducting the IBD study.

Results: PRPs in both groups took on many operational roles and influenced all stages of the IBD-related qualitative study: launch, design, implementation, and knowledge translation. PRPs provided more clarity on the study design, target population, inclusion-exclusion criteria, data collection approach, and the results. PRPs helped operationalize the project question, develop study material and data collection instruments, collect data, and present the data in a relevant and understandable manner to the patient community. The synergy of collaborative partnership resulted in two projects that were patient-centered, meaningful, understandable, legitimate, rigorous, adaptable, feasible, ethical and transparent, timely, and sustainable.

Conclusion: Collaborative and meaningful engagement of patients and researchers can influence all stages of qualitative research including design and approach, and outputs.

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来源期刊
Patient-Patient Centered Outcomes Research
Patient-Patient Centered Outcomes Research HEALTH CARE SCIENCES & SERVICES-
CiteScore
6.60
自引率
8.30%
发文量
44
审稿时长
>12 weeks
期刊介绍: The Patient provides a venue for scientifically rigorous, timely, and relevant research to promote the development, evaluation and implementation of therapies, technologies, and innovations that will enhance the patient experience. It is an international forum for research that advances and/or applies qualitative or quantitative methods to promote the generation, synthesis, or interpretation of evidence. The journal has specific interest in receiving original research, reviews and commentaries related to qualitative and mixed methods research, stated-preference methods, patient reported outcomes, and shared decision making. Advances in regulatory science, patient-focused drug development, patient-centered benefit-risk and health technology assessment will also be considered. Additional digital features (including animated abstracts, video abstracts, slide decks, audio slides, instructional videos, infographics, podcasts and animations) can be published with articles; these are designed to increase the visibility, readership and educational value of the journal’s content. In addition, articles published in The Patient may be accompanied by plain language summaries to assist readers who have some knowledge of, but not in-depth expertise in, the area to understand important medical advances. All manuscripts are subject to peer review by international experts.
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