背景:自2011年加拿大卫生研究院推出以患者为导向的研究策略以来,越来越多的人期望将面向患者的研究(POR)嵌入加拿大的健康研究社区。为了满足这一期望,并在神经发育障碍和儿童健康领域建设POR的能力,2017年,CanChild儿童残疾研究中心的研究人员和家庭领袖,麦克马斯特大学与儿童大脑健康网络和麦克马斯特继续教育合作开发和实施为期10周的在线家庭参与研究(FER)课程。
方法:从一开始,FER课程已与家庭领袖和研究人员合作交付。FER课程在共同学习和社区建设方面具有创新性。该课程旨在将家庭伙伴和研究人员聚集在一起,共同学习和联系,并在家庭参与研究的理论和实践中发展能力和信心。课程包括四个实时在线小组讨论,课程材料的个人复习,每周小组活动,以及最后的小组项目和演示。FER课程完成后,毕业生获得麦克马斯特大学微证书。
结论:为了满足POR能力建设的需要,共同创建并交付了神经发育障碍和儿童健康领域的新课程。超过6年(2018-2023年),FER课程已培训了20个国家/地区的430多名研究人员和家庭伙伴。FER课程的独特成果是,毕业生表示希望保持联系,并继续在课程之外进行合作,从而创建一个基于需求不断发展的国际FER社区网络。FER课程正在创建一个不断发展的国际研究人员社区,学员,自我倡导者,和家庭伙伴谁是支持实施有意义的参与神经发育障碍和儿童健康研究和超越。该课程在国际上得到认可,并在POR建立了能力建设记录。它的吸收,可持续性迄今为止的可扩展性表明,像FER课程这样的培训计划对于建立家庭参与研究的能力和领导能力是必要的。
在过去的二十年中,加拿大(和世界)明确承诺将患者及其家人纳入健康研究-这一过程称为面向患者的研究或我们所说的-家庭参与研究。2011年,加拿大卫生研究院推出了以患者为导向的研究战略,以实现这一目标。为了支持POR在神经发育障碍和儿童健康方面,CanChild儿童残疾研究中心与儿童大脑健康网络和麦克马斯特继续教育合作。一起,一组家庭照顾者和研究人员共同创建了家庭参与研究(FER)课程,为期10周的在线课程。FER课程的目的是让研究人员和家庭伙伴了解家庭参与原则以及如何在研究中使用它们。该课程涵盖家庭参与的核心领域,包括如何找到彼此,家庭和研究人员如何一起工作,以及克服研究伙伴关系中共同挑战的方法。该课程使用在线小组会议,讨论委员会,以及研究论文和视频等各种资源。通过一个小组项目,家庭伙伴和研究人员合作创建家庭参与资源。完成FER课程研究人员和家庭成员获得麦克马斯特大学微证书,并成为不断增长的FER课程毕业生全球社区的一部分。超过6年(2018-2023年),FER课程培训了来自20个国家的430多名研究人员和家庭伙伴。该课程加强了家庭参与的能力,并正在建立一个全球研究人员社区,学员,自我倡导者,以及致力于通过有意义的参与改善神经发育障碍和儿童健康研究的家庭伙伴。
BACKGROUND: Since 2011 when the Canadian Institutes of Health Research launched the Strategy for Patient Oriented Research, there has been a growing expectation to embed patient-oriented research (POR) in the health research community in Canada. To meet this expectation and build capacity for POR in the field of neurodevelopmental disability and child health, in 2017 researchers and family leaders at CanChild Centre for Childhood Disability Research, McMaster University partnered with Kids Brain Health Network and McMaster Continuing Education to develop and implement a 10-week online Family Engagement in Research (FER) Course.
METHODS: From its inception, the FER Course has been delivered in partnership with family leaders and researchers. The FER Course is innovative in its co-learning and community building approach. The course is designed to bring family partners and researchers together to co-learn and connect, and to develop competency and confidence in both the theory and practice of family engagement in research. Coursework involves four live online group discussions, individual review of course materials, weekly group activities, and a final group project and presentation. Upon completion of the FER Course, graduates earn a McMaster University micro-credential.
CONCLUSIONS: To meet a need in building capacity in POR, a novel course in the field of neurodevelopmental disability and child health has been co-created and delivered. Over six years (2018-2023), the FER Course has trained more than 430 researchers and family partners across 20 countries. A unique outcome of the FER Course is that graduates expressed the wish to stay connected and continue to collaborate well beyond the course in turn creating an international FER Community Network that continues to evolve based on need. The FER Course is creating a growing international community of researchers, trainees, self-advocates, and family partners who are championing the implementation of meaningful engagement in neurodevelopmental disability and child health research and beyond. The course is internationally recognized with an established record of building capacity in POR. Its uptake, sustainability, and scalability to date has illustrated that training programs like the FER Course are necessary for building capacity and leadership in family engagement in research.
In the last two decades there has been a clear commitment in Canada (and the world) to include patients and their families in health research—a process called patient-oriented research or as we refer to it—family engagement in research. In 2011, the Canadian Institutes of Health Research introduced the Strategy for Patient-Oriented Research to make this happen. To support POR in neurodevelopmental disability and child health, CanChild Centre for Childhood Disability Research teamed up with Kids Brain Health Network and McMaster Continuing Education. Together, a team of family caregivers and researchers co-created the Family Engagement in Research (FER) Course, a 10-week online course.The purpose of the FER Course is for researchers and family partners to learn about family engagement principles and how to use them in research. The course covers core areas in family engagement including how to find each other, how families and researchers can work together, and ways to overcome common challenges in research partnerships. The course uses online group sessions, discussion boards, and various resources such as research papers and videos. Through a group project, family partners and researchers collaborate to create a resource on family engagement. Completing the FER Course researchers and family members earn a McMaster University micro-credential and become part of a growing global community of FER Course graduates.Over six years (2018–2023), the FER Course has trained more than 430 researchers and family partners from 20 countries. The course has strengthened capacity in family engagement and is building a worldwide community of researchers, trainees, self-advocates, and family partners who are dedicated to improving neurodevelopmental disability and child health research through meaningful engagement.