Centre for Disability Research and Policy, The University of Sydney, Sydney, New South Wales, Australia
University Centre for Rural Health, The University of Sydney, Lismore, New South Wales, Australia.
BMJ Glob Health. 2023 Mar;8(3). doi: 10.1136/bmjgh-2022-011561.
To date, the exclusion of people with disability participating in research has limited the evidence base informing health system strengthening policy and practice more generally, and addressing disability-related inequalities in access to health services and better health outcomes more particularly. Given that more than 1 billion people, or 16% of the world's population, have a disability, we may fail to respond to the needs of a large proportion of the population unless we are purposeful with inclusion. Our research in this area indicates that online qualitative methods can be effective in engaging under-represented groups and are essential to ensure their input into health policy and systems research. This has important implications for researchers whose responsibility it is to make all health research disability inclusive, for ethical and methodological reasons, so they do not perpetuate the under-representation of people with disability in health policy and systems research. Our paper puts forward several recommendations to facilitate more people with disability participating in health policy and systems research. By critically reflecting on a health system strengthening research project, in which we purposefully aimed to support the participation of people with disability, we identify lessons learnt and issues to consider when planning and conducting accessible research. We also propose a set of actions for moving the agenda forward.
迄今为止,将残疾人士排除在研究之外,限制了为加强卫生系统政策和实践提供证据的基础,更具体地说,也限制了解决与残疾相关的获取卫生服务机会不平等和改善健康结果不平等的证据基础。鉴于全世界有超过 10 亿人,即 16%的人口,有残疾,除非我们有意识地进行包容,否则我们可能无法满足大部分人口的需求。我们在这一领域的研究表明,在线定性方法可以有效地让代表性不足的群体参与进来,对于确保他们对卫生政策和系统研究的投入至关重要。这对研究人员来说具有重要意义,他们有责任出于道德和方法上的原因,使所有卫生研究都具有包容性,以免残疾人士在卫生政策和系统研究中继续代表性不足。我们的论文提出了若干建议,以促进更多的残疾人士参与卫生政策和系统研究。通过批判性地反思一项旨在支持残疾人士参与的卫生系统强化研究项目,我们确定了在规划和开展无障碍研究时需要考虑的经验教训和问题。我们还提出了一系列行动方案,以推动议程的进展。