Initiative, NL SUPPORT, Strategy for Patient-Oriented Research (SPOR-CIHR), Faculty of Medicine, Memorial University of Newfoundland, St. John's, NL, Canada.
School of Pharmacy and Faculty of Medicine, NL SUPPORT, Strategy for Patient-Oriented Research (SPOR-CIHR), Memorial University of Newfoundland, St. John's, NL, Canada.
Methods Mol Biol. 2021;2249:537-552. doi: 10.1007/978-1-0716-1138-8_29.
Engaging with patients and families is largely routine at the healthcare service or provision level. The concept of patient engagement in health research has a more recent history but is now often endorsed by leading journals and funders. Often described as research being done with patients, rather than "to" or "about" them, patient-oriented research is distinguished by patients serving as research partners rather than passive study subjects. It is generally accepted that patient engagement in health research is worthwhile and can contribute to better quality research. However, questions remain about how to do it, what values underlie it, and how patients can be engaged as partners in health research. In this chapter, we attempt to answer these questions and provide tangible examples of patient-oriented research in our province of Newfoundland and Labrador (NL), Canada. While there is no single approach to patient engagement in health research, we hope the examples provided herein help demonstrate how it might be done and assist research teams to better integrate and utilize patients' valuable input.
与患者和家属的互动在医疗服务或提供层面上基本是常规操作。患者参与健康研究的概念出现的时间较晚,但现在已得到许多权威期刊和资助者的认可。通常情况下,将其描述为与患者一起进行研究,而不是“针对”或“关于”他们的研究,以患者为中心的研究的特点是让患者充当研究伙伴,而不是被动的研究对象。人们普遍认为,患者参与健康研究是有价值的,可以促进更好质量的研究。然而,如何进行患者参与健康研究、其背后的价值观是什么以及如何让患者作为健康研究的合作伙伴参与进来等问题仍有待探讨。在本章中,我们试图回答这些问题,并提供加拿大纽芬兰和拉布拉多省(NL)以患者为中心的研究的具体实例。虽然没有单一的方法可以用于健康研究中的患者参与,但我们希望本文提供的实例能够说明如何进行患者参与,以及帮助研究团队更好地整合和利用患者有价值的意见。