Patient engagement (or patient and public involvement) in health research is becoming a requirement for many health research funders, yet many researchers have little or no experience in engaging patients as partners as opposed to research subjects. Additionally, many patients have no experience providing input on the research design or acting as a decision-making partner on a research team. Several potential risks exist when patient engagement is done poorly, despite best intentions. Some of these risks are that: (1) patients’ involvement is merely tokenism (patients are involved but their suggestions have little influence on how research is conducted); (2) engaged patients do not represent the diversity of people affected by the research; and, (3) research outcomes lack relevance to patients’ lives and experiences. Qualitative health research (the collection and systematic analysis of non-quantitative data about peoples’ experiences of health or illness and the healthcare system) offers several approaches that can help to mitigate these risks. Several qualitative health research methods, when done well, can help research teams to: (1) accurately incorporate patients’ perspectives and experiences into the design and conduct of research; (2) engage diverse patient perspectives; and, (3) treat patients as equal and ongoing partners on the research team. This commentary presents several established qualitative health research methods that are relevant to patient engagement in research. The hope is that this paper will inspire readers to seek more information about qualitative health research, and consider how its established methods may help improve the quality and ethical conduct of patient engagement for health research. Background Research funders in several countries have posited a new vision for research that involves patients and the public as co-applicants for the funding, and as collaborative partners in decision-making at various stages and/or throughout the research process. Patient engagement (or patient and public involvement) in health research is presented as a more democratic approach that leads to research that is relevant to the lives of the people affected by its outcomes. What is missing from the recent proliferation of resources and publications detailing the practical aspects of patient engagement is a recognition of how existing research methods can inform patient engagement initiatives. Qualitative health research, for example, has established methods of collecting and analyzing non-quantitative data about individuals’ and communities’ lived experiences with health, illness and/or the healthcare system. Included in the paradigm of qualitative health research is participatory health research, which offers approaches to partnering with individuals and communities to design and conduct research that addresses their needs and priorities. Discussion The purpose of this commentary is to explore how qualitative health research methods can inform and support meaningful engagement with patients as partners. Specifically, this paper addresses issues of: rigour (how can patient engagement in research be done well?); representation (are the right patients being engaged?); and, reflexivity (is engagement being done in ways that are meaningful, ethical and equitable?). Various qualitative research methods are presented to increase the rigour found within patient engagement. Approaches to engage more diverse patient perspectives are presented to improve representation beyond the common practice of engaging only one or two patients. Reflexivity, or the practice of identifying and articulating how research processes and outcomes are constructed by the respective personal and professional experiences of researchers and patients, is presented to support the development of authentic, sustainable, equitable and meaningful engagement of patients as partners in health research. Conclusions Researchers will need to engage patients as stakeholders in order to satisfy the overlapping mandate in health policy, care and research for engaging patients as partners in decision-making. This paper presents several suggestions to ground patient engagement approaches in established research designs and methods.

中文翻译：

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使用定性健康研究方法来提高患者和公众对研究的参与度和参与度

健康研究中的患者参与（或患者和公众参与）正在成为许多健康研究资助者的要求，但许多研究人员很少或根本没有将患者作为合作伙伴而不是研究对象的经验。此外，许多患者没有为研究设计提供意见或作为研究团队的决策伙伴的经验。尽管有最好的意图，但如果患者参与不佳，则会存在一些潜在风险。其中一些风险是：（1）患者的参与只是象征性的（患者参与，但他们的建议对研究的进行影响不大）；(2) 参与的患者不代表受研究影响的人群的多样性；(3) 研究结果与患者的生活和经历缺乏相关性。定性健康研究（收集和系统分析关于人们的健康或疾病经历和医疗保健系统的非定量数据）提供了几种有助于减轻这些风险的方法。几种定性健康研究方法，如果做得好，可以帮助研究团队：（1）准确地将患者的观点和经验纳入研究的设计和实施；(2) 吸引不同的患者观点；(3) 将患者视为研究团队中平等和持续的合作伙伴。本评论介绍了几种与患者参与研究相关的已建立的定性健康研究方法。希望这篇论文能激发读者寻求更多关于定性健康研究的信息，并考虑其既定方法如何有助于提高患者参与健康研究的质量和道德行为。背景 几个国家的研究资助者提出了一个新的研究愿景，让患者和公众作为资助的共同申请者，并在各个阶段和/或整个研究过程中作为决策的合作伙伴。健康研究中的患者参与（或患者和公众参与）被认为是一种更民主的方法，可以进行与受其结果影响的人们的生活相关的研究。最近详细介绍患者参与实践方面的资源和出版物的激增所缺少的是对现有研究方法如何为患者参与计划提供信息的认识。例如，定性健康研究已经建立了收集和分析有关个人和社区在健康、疾病和/或医疗保健系统方面的生活经验的非定量数据的方法。包括在定性健康研究范式中的是参与式健康研究，它提供了与个人和社区合作设计和开展研究以满足他们的需求和优先事项的方法。讨论 本评论的目的是探讨定性健康研究方法如何为患者作为合作伙伴提供信息和支持有意义的参与。具体来说，本文解决了以下问题： 严谨性（患者如何才能很好地参与研究？）；代表（是否有合适的患者参与？）；以及反思性（参与是否以有意义、合乎道德和公平的方式进行？）。提出了各种定性研究方法，以提高患者参与的严谨性。提出了让更多不同患者观点参与的方法，以提高代表性，而不是仅让一两个患者参与的常见做法。反身性，或通过研究人员和患者各自的个人和专业经验确定和阐明如何构建研究过程和结果的实践，以支持患者作为健康研究合作伙伴的真实、可持续、公平和有意义的参与的发展。结论 研究人员需要让患者作为利益相关者参与，以满足卫生政策、护理和研究方面的重叠任务，让患者作为合作伙伴参与决策。本文提出了一些建议，以在已建立的研究设计和方法中建立患者参与方法。患者作为健康研究的合作伙伴公平和有意义地参与。结论 研究人员需要让患者作为利益相关者参与，以满足卫生政策、护理和研究方面的重叠任务，让患者作为合作伙伴参与决策。本文提出了一些建议，以在已建立的研究设计和方法中建立患者参与方法。患者作为健康研究的合作伙伴公平和有意义地参与。结论 研究人员需要让患者作为利益相关者参与，以满足卫生政策、护理和研究方面的重叠任务，让患者作为合作伙伴参与决策。本文提出了一些建议，以在已建立的研究设计和方法中建立患者参与方法。