Elliott Meghan J, Goodarzi Zahra, Sale Joanna E M, Wilhelm Linda A, Laupacis Andreas, Hemmelgarn Brenda R, Straus Sharon E
Department of Medicine, University of Calgary, AB, Canada.
Department of Community Health Sciences, University of Calgary, AB, Canada.
Can J Kidney Health Dis. 2018 Oct 19;5:2054358118807480. doi: 10.1177/2054358118807480. eCollection 2018.
Patients and other stakeholders are increasingly engaging as partners in research, although how they perceive such experiences, particularly over the long term, is not well understood.
To characterize how participants from a nondialysis chronic kidney disease (CKD) research priority-setting project conducted 2 years previously perceived the significance of their involvement.
Qualitative descriptive study with semi-structured, individual interviews.
Participants resided across Canada.
Eligible participants included stakeholders (ie, patients with nondialysis CKD, caregivers, health care professionals, and policy makers) who had taken part in a prior CKD research priority-setting project.
We explored stakeholder experiences and perspectives on engagement in CKD research prioritization.
We purposively sampled across stakeholder roles and engagement types (ie, involvement in the priority-setting workshop, wiki online tool, and/or steering committee). All interviews were conducted by a single investigator by telephone or face-to-face, and audio-recordings were transcribed verbatim. The data were inductively coded and analyzed by 2 investigators using a thematic analysis approach.
We conducted 23 interviews across stakeholder roles and engagement types. Participants appreciated the integration of distinct stakeholder communities of patients, researchers, and health care professionals that occurred through engagement in research priority setting. Their opportunity to interact with patients and others directly impacted by CKD outside of the clinical setting contributed to an enhanced understanding of the CKD lived experience and value of patient-oriented research. This interaction helped participants refine and refocus their commitment to patient-centered CKD care and research, characterized by enhanced knowledge and confidence (patients/caregivers), adaptations to existing clinical practices and policies (health care providers/policy makers), and subsequent research engagement.
The views of participants may not reflect those of individuals in other research or health care settings.
Stakeholder engagement in nondialysis CKD research prioritization encouraged the integration of stakeholder communities, an appreciation of the CKD experience, and a refocusing of participants' commitment to research and care. Findings highlight considerations for future health research engaging stakeholders, particularly those living with CKD, as research partners.
患者和其他利益相关者越来越多地作为合作伙伴参与研究，尽管他们如何看待此类经历，尤其是长期经历，目前还不太清楚。
描述两年前开展的非透析慢性肾脏病（CKD）研究优先级设定项目的参与者如何看待他们参与的意义。
采用半结构化个人访谈的定性描述性研究。
参与者居住在加拿大各地。
符合条件的参与者包括曾参与过先前CKD研究优先级设定项目的利益相关者（即非透析CKD患者、护理人员、医疗保健专业人员和政策制定者）。
我们探讨了利益相关者在参与CKD研究优先级设定方面的经历和观点。
我们有目的地对利益相关者的角色和参与类型（即参与优先级设定研讨会、维基在线工具和/或指导委员会）进行抽样。所有访谈均由一名调查员通过电话或面对面进行，并逐字转录录音。数据由两名调查员采用主题分析方法进行归纳编码和分析。
我们对不同利益相关者角色和参与类型进行了23次访谈。参与者赞赏通过参与研究优先级设定实现了患者、研究人员和医疗保健专业人员等不同利益相关者群体的整合。他们在临床环境之外与受CKD直接影响的患者及其他人互动的机会，有助于增强对CKD生活经历以及以患者为导向的研究价值的理解。这种互动帮助参与者完善并重新聚焦他们对以患者为中心的CKD护理和研究的承诺，其特点是知识和信心增强（患者/护理人员）、对现有临床实践和政策进行调整（医疗保健提供者/政策制定者）以及随后的研究参与。
参与者的观点可能无法反映其他研究或医疗保健环境中个人的观点。
利益相关者参与非透析CKD研究优先级设定鼓励了利益相关者群体的整合，增进了对CKD经历的理解，并使参与者重新聚焦对研究和护理的承诺。研究结果突出了未来让利益相关者，尤其是CKD患者作为研究伙伴参与健康研究时需要考虑的因素。
