Department of Management, HEC Montreal, 3000 chemin de la Cote-Ste-Catherine, Montreal, QC, H3T2A7, Canada.
University of Montreal, Montreal, Canada.
BMC Med Ethics. 2020 May 11;21(1):34. doi: 10.1186/s12910-020-0460-0.
Partnering with patients in healthcare research now benefits from a strong rationale and is encouraged by funding agencies and research institutions. However, this new approach raises ethical issues for patients, researchers, research professionals and administrators. The main objective of this review is to map the literature related to the ethical issues associated with patient partnership in healthcare research, as well as the recommendations to address them. Our global aim is to help researchers, patients, research institutions and research ethics boards reflecting on and dealing with these issues.
We conducted a scoping review of the ethical issues and recommendations associated with partnering with patients in healthcare research. After our search strategy, 31 peer reviewed articles published between 2007 and 2017 remained and were analyzed.
We have identified 58 first-order ethical issues and challenges associated with patient partnership in research, regrouped in 18 second-order ethical themes. Most of the issues are transversal to all phases and stages of the research process and a lot of them could also apply to patient-partnership in other spheres of health, such as governance, quality improvement, and education. We suggested that ethical issues and challenges of partnered research can be related to four ethical frameworks: 1) Research ethics; 2) Research integrity; 3) Organizational ethics, and 4) Relational ethics.
We have identified numerous ethical issues associated with the recent approach of patient-partnership in research. These issues are more diverse than the issues associated with a more traditional research approach. Indeed, the current discussion on how we address ethical issues in research is anchored in the assumption that patients, as research participants, must be protected from risk. However, doing research with, and not on, the patient involves changes in the way we reflect on the ethical issues associated with this approach to research. We propose to broaden the ethical discussion on partnered research to not only rely on a research ethics framework, but to also frame it within the areas of research integrity, organizational ethics and relational ethics.
如今，在医疗保健研究中与患者合作有其充分的理由，并得到了资助机构和研究机构的鼓励。然而，这种新方法给患者、研究人员、研究专业人员和管理人员带来了伦理问题。本综述的主要目的是绘制与医疗保健研究中患者合作相关的伦理问题的文献，并提出解决这些问题的建议。我们的总体目标是帮助研究人员、患者、研究机构和研究伦理委员会思考和处理这些问题。
我们对与医疗保健研究中的患者合作相关的伦理问题和建议进行了范围界定审查。在我们的搜索策略之后，2007 年至 2017 年间发表的 31 篇同行评审文章仍然存在，并进行了分析。
我们确定了 58 个与研究中的患者合作相关的第一级伦理问题和挑战，这些问题被归为 18 个第二级伦理主题。大多数问题贯穿研究过程的所有阶段和阶段，其中许多问题也可能适用于医疗保健领域的其他领域，如治理、质量改进和教育。我们认为，合作研究的伦理问题和挑战可以与四个伦理框架相关联：1）研究伦理；2）研究诚信；3）组织伦理；4）关系伦理。
我们已经确定了与研究中患者合作的新方法相关的许多伦理问题。这些问题比与更传统的研究方法相关的问题更加多样化。事实上，目前关于我们如何解决研究中的伦理问题的讨论是以这样一种假设为基础的，即作为研究参与者的患者必须免受风险的影响。然而，与患者一起开展研究而不是针对患者进行研究，这涉及到我们对这种研究方法相关伦理问题的反思方式的改变。我们建议将关于合作研究的伦理讨论扩大到不仅依赖于研究伦理框架，而且还将其纳入研究诚信、组织伦理和关系伦理领域。
