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Partnering with frail or seriously ill patients in research: a systematic review.在研究中与体弱或重病患者合作:一项系统综述。
Res Involv Engagem. 2020 Sep 11;6:52. doi: 10.1186/s40900-020-00225-2. eCollection 2020.
2
Patients as Partners in Research: How to Talk About Compensation With Patient Partners.患者作为研究的伙伴:如何与患者伙伴谈论补偿。
J Orthop Sports Phys Ther. 2020 Aug;50(8):413-414. doi: 10.2519/jospt.2020.0106.
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Study protocol for a hospital-to-home transitional care intervention for older adults with multiple chronic conditions and depressive symptoms: a pragmatic effectiveness-implementation trial.医院到家庭过渡性护理干预对患有多种慢性病和抑郁症状的老年人的研究方案:一项实用有效性-实施试验。
BMC Geriatr. 2020 Jul 10;20(1):240. doi: 10.1186/s12877-020-01638-0.
4
Defining Patient Engagement in Research: Results of a Systematic Review and Analysis: Report of the ISPOR Patient-Centered Special Interest Group.定义研究中的患者参与:系统评价和分析的结果:ISPOR 以患者为中心的特别兴趣小组的报告。
Value Health. 2020 Jun;23(6):677-688. doi: 10.1016/j.jval.2020.01.019. Epub 2020 May 23.
5
Meaningful Engagement of Older Adults in Long-Term Care: A Call for Action.老年人在长期护理中的有意义参与:行动呼吁。
Can J Nurs Res. 2021 Jun;53(2):91-93. doi: 10.1177/0844562120932328. Epub 2020 Jun 9.
6
Preparing for patient partnership: A scoping review of patient partner engagement and evaluation in research.准备患者合作:患者伙伴参与和评估研究的范围综述。
Health Expect. 2020 Jun;23(3):523-539. doi: 10.1111/hex.13040. Epub 2020 Mar 10.
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Engaging patients in primary care design: An evaluation of a novel approach to codesigning care.让患者参与初级保健设计:对一种共同设计护理新方法的评估。
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Depression and multimorbidity: Considering temporal characteristics of the associations between depression and multiple chronic diseases.抑郁与多种疾病共存:考虑抑郁与多种慢性疾病关联的时间特征。
Health Psychol. 2019 Sep;38(9):802-811. doi: 10.1037/hea0000737. Epub 2019 Apr 22.
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Practical guidance for engaging patients in health research, treatment guidelines and regulatory processes: results of an expert group meeting organized by the World Health Organization (WHO) and the European Society for Clinical and Economic Aspects of Osteoporosis, Osteoarthritis and Musculoskeletal Diseases (ESCEO).参与健康研究、治疗指南和监管流程的患者参与实用指南:世界卫生组织(WHO)和欧洲临床与经济骨质疏松、骨关节炎和肌肉骨骼疾病学会(ESCEO)组织的专家组会议的结果。
Aging Clin Exp Res. 2019 Jul;31(7):905-915. doi: 10.1007/s40520-019-01193-8. Epub 2019 Apr 16.
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A Patient-Centered Approach to Comparative Effectiveness Research Focused on Older Adults: Lessons From the Patient-Centered Outcomes Research Institute.以老年患者为中心的比较效果研究方法:来自患者为中心的结局研究学会的经验。
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让患有多种疾病的老年人作为患者研究伙伴参与其中:一项以患者为导向的研究项目的经验教训。

Engagement of older adults with multimorbidity as patient research partners: Lessons from a patient-oriented research program.

作者信息

Markle-Reid Maureen, Ganann Rebecca, Ploeg Jenny, Heald-Taylor Gail, Kennedy Laurie, McAiney C, Valaitis Ruta

机构信息

School of Nursing, McMaster University, Hamilton, Ontario, Canada.

Health Research Methods, Evidence and Impact, Faculty of Health Sciences, McMaster University, Hamilton, Ontario, Canada.

出版信息

J Multimorb Comorb. 2021 Mar 17;11:2633556521999508. doi: 10.1177/2633556521999508. eCollection 2021 Jan-Dec.

DOI:10.1177/2633556521999508
PMID:33796472
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC7975523/
Abstract

BACKGROUND

Patient "engagement" in health research broadly refers to including people with lived experience in the research process. Although previous reviews have systematically summarized approaches to engaging older adults and their caregivers in health research, there is currently little guidance on how to meaningfully engage older adults with multimorbidity as research partners.

OBJECTIVES

This paper describes the lessons learned from a patient-oriented research program, the Aging, Community and Health Research Unit (ACHRU), on how to engage older adults with multimorbidity as research partners. Over the past 7-years, over 40 older adults from across Canada have been involved in 17 ACHRU projects as patient research partners.

METHODS

We developed this list of lessons learned through iterative consensus building with ACHRU researchers and patient partners. We then met to collectively identify and summarize the reported successes, challenges and lessons learned from the experience of engaging older adults with multimorbidity as research partners.

RESULTS

ACHRU researchers reported engaging older adult partners across many phases of the research process. Five challenges and lessons learned were identified: 1) actively finding patient partners who reflect the diversity of older adults with multimorbidity, 2) developing strong working relationships with patient partners, 3) providing education and support for both patient partners and researchers, 4) using flexible approaches for engaging patients, and 5) securing adequate resources to enable meaningful engagement.

CONCLUSION

The lessons learned through this work may provide guidance to researchers on how to facilitate meaningful engagement of this vulnerable and understudied subgroup in the patient engagement literature.

摘要

背景

患者参与健康研究大致是指让有实际经历的人参与到研究过程中。尽管之前的综述系统总结了让老年人及其护理人员参与健康研究的方法,但目前对于如何让患有多种疾病的老年人作为研究伙伴切实参与其中,几乎没有指导意见。

目的

本文描述了一个以患者为导向的研究项目——衰老、社区与健康研究单位(ACHRU),在让患有多种疾病的老年人作为研究伙伴方面所吸取的经验教训。在过去7年里,来自加拿大各地的40多名老年人作为患者研究伙伴参与了17个ACHRU项目。

方法

我们通过与ACHRU研究人员和患者伙伴进行反复的共识构建,制定了这份经验教训清单。然后我们共同会面,确定并总结从让患有多种疾病的老年人作为研究伙伴的经历中所报告的成功之处、挑战和经验教训。

结果

ACHRU研究人员报告称,在研究过程的多个阶段都让老年伙伴参与其中。确定了五个挑战和经验教训:1)积极寻找能够反映患有多种疾病的老年人多样性的患者伙伴;2)与患者伙伴建立牢固的工作关系;3)为患者伙伴和研究人员提供教育和支持;4)采用灵活的方法让患者参与;5)确保有足够的资源以实现有意义的参与。

结论

通过这项工作吸取的经验教训可能会为研究人员提供指导,告诉他们如何促进这一在患者参与文献中易受伤害且研究不足的亚群体进行有意义的参与。