期刊名称：International Journal of Population Data Science
电子版ISSN：2399-4908
出版年度：2020
卷号：5
期号：3
页码：1-10
DOI：10.23889/ijpds.v5i3.1364
出版社：Swansea University
摘要：This article explores the approach that ICES (formerly the Institute for Clinical Evaluative Sciences)uses to encourage public engagement at both the research study and corporate level. ICES is anindependent not-for-profit research institute in the province of Ontario, Canada. This article wasco-written by ICES’ public engagement team and four members of the ICES Public AdvisoryCouncil (PAC). As part of the process of writing this article PAC members provided theirreflections on why they got involved, what worked well and the limitations and challenges of ICES’approach. ICES described the development of its public engagement strategy to inform how the institutionwould capture and incorporate the values of Ontarians in ICES activities and research. ICES provideddetails on two key elements of its strategy: the formation of a PAC to advise its leadership, andthe creation of resources and supports to encourage researchers to incorporate public engagementin their projects. PAC members and ICES provided perspectives on what impact they perceive as a result ofthe public engagement strategy. PAC members expressed that ICES has demonstrated listening toand using their input, but it is too early to evaluate if their feedback has changed the way ICESconducts its work. ICES discussed the challenges and successes in building and implementing thepublic engagement strategy, including recruiting a diverse council, aligning with public prioritiesand creating a culture of engagement. As a result of public input, ICES has restructured theway the institution explains its privacy and cybersecurity approach to build trust and confidence.ICES has also seen an increase in researchers using public engagement resources, and early datasuggests that in 2019 about 20% of scientists included some form of public engagement in theirprojects. ICES’ journey to public engagement resulted in important changes to processes and activitiesat the institution, but there is much more that needs to be done. PAC members advocate thatpublic members should be engaged in health data research and hope that public input will bea core element in health data research in the future. ICES will continue its efforts to addresspublic priorities and will seek to further evaluate the impact of public engagement across theorganisation.
关键词：public engagement; health data research; research institute
