Browne Jacqui, Dorris Emma R
Independent Researcher, Kerry, Ireland.
PPI Ignite Network at UCD, University College Dublin Research Office, University College Dublin, Dublin, Ireland.
Front Rehabil Sci. 2022 Apr 22;3:878231. doi: 10.3389/fresc.2022.878231. eCollection 2022.
Public and Patient Involvement can align both the research process and its outcomes with the values, needs and expectations of society. By fostering the design of inclusive, engaged, and sustainable practices, research and research integrity can be improved. Devolving power to involve patients and relevant publics in deliberative decision making can produce better research outcomes. Disabled people are often categorized as "Hard to Reach." There is a varied and complex ecosystem of societal challenges of living with a disability that reinforce this. However, if researchers are to meet their obligations under the UN Convention on the Rights of Persons with Disabilities, disabled people should be included in public and patient involvement for all research in which they have a stake. In this article we argue that a better understanding of rights-based approaches and the social model of disability within the wider research community can help to remove barriers to research involvement for disabled persons. We focus on articles 3, 4, and 9 of the Convention and discuss how the principles of participation, accessibility, and equality of opportunity can be applied to research involvement, and how their adoption can facilitate truly meaningful PPI in disability research.
公众和患者参与能够使研究过程及其成果与社会的价值观、需求和期望保持一致。通过促进包容性、参与性和可持续性实践的设计，可以提升研究及研究诚信水平。将权力下放，让患者和相关公众参与审议决策，能够产生更好的研究成果。残疾人常常被归类为“难以接触到的群体”。与残疾共存所带来的各种复杂的社会挑战构成了一个多样化且复杂的生态系统，进一步强化了这种情况。然而，如果研究人员要履行《联合国残疾人权利公约》规定的义务，那么在所有残疾人利害相关的研究中，都应将他们纳入公众和患者参与的范畴。在本文中，我们认为，在更广泛的研究界更好地理解基于权利的方法和残疾的社会模式，有助于消除残疾人参与研究的障碍。我们聚焦于《公约》的第三条、第四条和第九条，讨论参与、无障碍和机会平等原则如何应用于研究参与，以及采用这些原则如何促进残疾研究中真正有意义的公众和患者参与。
