Russo Fiona, Sherburn Isabella, Finlay Keri, Nunn Jack, Ferrie Monica, McKenzie Anne, Murray Sean, Cannings John, Pratt Greg, Boughtwood Tiffany
Centre for Health Research, University of Southern Queensland, Toowoomba, QLD, Australia.
Australian Genomics, Murdoch Children's Research Institute, Melbourne, VIC, Australia.
Res Involv Engagem. 2024 Nov 28;10(1):126. doi: 10.1186/s40900-024-00633-8.
There is increasing global support from governments and other funding bodies for community involvement in research, alongside a scientific and moral imperative for responsible and ethical research practice. Ninety per cent of Australian patient-led organisations in rare diseases have clearly articulated research priorities, indicating a desire among people affected by disease to be involved in research that impacts their communities. Philanthropic research, which is likely to have predominantly community-minded priorities, is worth over AU$1 billion annually and increased more than 100% between 2007 and 2017.
This research aimed to understand public perspectives on community involvement in health-related research activities, and to inform the development of guidelines for genomic researchers to improve this involvement.
A 37-question survey was completed by 1,156 members of the Australian public via Dynata. The survey was co-designed by the Involve Australia Working Group of community members within Australian Genomics. Results from 1156 responses were analysed.
Key themes emerging from the survey data that impact potential involvement were low community confidence to contribute, a limited understanding of community involvement, roles and recognition, trust and governance of data, perceived trustworthiness of research funders, and factors related to time and personal resources. A variety of motivations for involvement were also stated.
Members of the Australian public are interested in research involvement; however the differences between involvement and participation are poorly understood and a variety of barriers still exist. Researchers must actively reach out into communities and offer opportunities to engage with research and identify community priorities.
政府和其他资助机构在全球范围内对社区参与研究的支持日益增加，同时对于负责任和符合伦理的研究实践也存在科学和道德上的要求。澳大利亚90%由患者主导的罕见病组织已经明确阐述了研究重点，这表明受疾病影响的人们渴望参与对其社区有影响的研究。慈善研究可能主要以社区意识为优先事项，每年价值超过10亿澳元，在2007年至2017年间增长超过100%。
本研究旨在了解公众对社区参与健康相关研究活动的看法，并为基因组研究人员制定指导方针以改善这种参与提供信息。
1156名澳大利亚公众通过Dynata完成了一项包含37个问题的调查。该调查由澳大利亚基因组学领域的社区成员组成的澳大利亚参与工作组共同设计。对1156份回复的结果进行了分析。
调查数据中出现的影响潜在参与的关键主题包括社区贡献信心低、对社区参与、角色和认可的理解有限、数据的信任和治理、对研究资助者可信度的认知以及与时间和个人资源相关的因素。还阐述了各种参与的动机。
澳大利亚公众对参与研究感兴趣；然而对参与和参与之间的差异理解不足，仍然存在各种障碍。研究人员必须积极深入社区，提供参与研究的机会并确定社区优先事项。
