Health Services Research Unit, University of Aberdeen, Aberdeen, Scotland.
School of Nursing, Midwifery and Health Systems, University College Dublin, Dublin, Ireland.
Health Expect. 2022 Dec;25(6):2609-2613. doi: 10.1111/hex.13576. Epub 2022 Sep 12.
Meaningful and inclusive involvement of all people affected by research in the design, management and dissemination of that research requires skills, time, flexibility and resources. There continue to be research practices that create implicit and explicit exclusion of some members of the public who may be 'seldom heard' or 'frequently ignored'. Our focus is particularly on the involvement of people living with cognitive impairment, including people with one of the many forms of dementia and people with learning disabilities. We reflect especially on issues relating to the precommencement stage of research. We suggest that despite pockets of creative good practice, research culture remains a distinct habitus that continues to privilege cognition and articulacy in numerous ways. We argue that in perpetuating this system, some researchers and the institutions that govern research are committing a form of bureaucratic violence. We call for a reimagining of the models of research governance, funding and processes to incorporate the time and flexibility that are essential for meaningful involved research, particularly at the precommencement stage. Only then will academic health and social science research that is truly collaborative, engaged, accessible and inclusive be commonplace. PUBLIC AND PATIENT CONTRIBUTION: This viewpoint article was written by a research network of academics with substantial experience in undertaking and researching patient and public involvement and codesign work with representatives of the public and patients right across the health system. Our work guided the focus of this viewpoint as we reflected on our experiences.
有意义和包容地让所有受研究影响的人参与到研究的设计、管理和传播中,需要技能、时间、灵活性和资源。仍有一些研究实践会导致一些公众成员被隐性或显性地排除在外,这些人可能是“很少被听到”或“经常被忽视”的。我们特别关注那些受认知障碍影响的人的参与,包括患有多种形式痴呆症的人和有学习障碍的人。我们特别反思了与研究启动前阶段有关的问题。我们认为,尽管存在一些创造性的良好实践,但研究文化仍然是一种独特的习惯,它以多种方式继续优先考虑认知和表达能力。我们认为,在延续这种体系的过程中,一些研究人员和管理研究的机构正在实施一种形式的官僚暴力。我们呼吁重新构想研究治理、资助和流程的模式,纳入对于有意义的参与式研究至关重要的时间和灵活性,特别是在研究启动前阶段。只有这样,真正具有合作性、参与性、可及性和包容性的学术健康和社会科学研究才会成为常态。公众和患者的贡献:这篇观点文章是由一个研究网络的学者撰写的,他们在与公众和患者代表进行患者和公众参与以及共同设计工作方面拥有丰富的经验,涉及整个卫生系统。我们的工作指导了这篇观点文章的重点,因为我们反思了我们的经验。