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"Exploring knowledge-user experiences in integrated knowledge translation: a biomedical investigation of the causes and consequences of food allergy".
Research Involvement and Engagement Pub Date : 2016-09-01 , DOI: 10.1186/s40900-016-0043-x
Jenna Dixon 1 , Susan J Elliott 1 , Ann E Clarke 2
Affiliation  

PLAIN ENGLISH SUMMARY Food allergy is a serious public health problem in Canada and other high-income countries, as it is potentially life threatening and severely impacts the quality of life for individuals and their families. Yet, many questions still remain as to its origins and determinants, and the best practices for treatment. Formed to tackle these very questions, the GET-FACTS research study centers on a novel concept in biomedical research: in order to make this science useful, knowledge creation must include meaningful interactions with knowledge-users. With this, knowledge-users are present at every stage of the research and are crucial, central and equal contributors. This study reflects on the early part of that journey from the perspective of the knowledge-users. We conducted interviews with all non-scientist members of the GET-FACTS steering committee, representing Canadian organizations that deal with patient advocacy and policy with regards to food allergy. Steering committee members had a clear sense that scientists and knowledge-users are equally responsible for putting knowledge into action and the importance of consulting and integrating knowledge-users throughout research. They also have high expectations for the GET-FACTS integrated process; that this model of doing science will create better scientists (e.g. improve communication skills) and make the scientific output more useful and relevant. Our work highlights both the unique contributions that knowledge-users can offer to knowledge creation as well as the challenges of trying to unify members from such different communities (policy/advocacy and biomedical science). There remains a real need to develop more touch points and opportunities for collaboration if true integration is to be achieved. Despite the obstacles, this model can help change the way knowledge is created in the biomedical world. ABSTRACT ᅟ. BACKGROUND Despite the burden of food allergic disease many questions remain as to its origins, determinants and best practices for treatment. Formed to tackle these very questions, the GET-FACTS (Genetics, Environment and Therapies: Food Allergy Clinical Tolerance Studies) research study centers around a novel concept in biomedical research: in order to make this science useful, knowledge creation must include meaningful interactions with knowledge-users, known as Integrated Knowledge Translation (IKT). In IKT, knowledge-users are present at every stage of the research and are crucial, central and equal contributors. This paper contributes to this exciting form of research by reflecting on the beginning of that journey from the perspective of the knowledge-users. METHODS Semi structured in-depth interviews were conducted in year 2 of the 5 year GET-FACTS project with all (n = 9) non-scientist members of the GET-FACTS steering committee, representing Canadian organizations that deal with patient advocacy and policy with regards to food allergy. Transcripts were coded and organized by themes developed both deductively and inductively. RESULTS Steering committee members indicated a clear sense that scientists and knowledge-users are equally responsible for the translation of knowledge into action and the importance of consulting and integrating knowledge-users throughout research. Overall, these knowledge-users have very high expectations for the GET-FACTS IKT process; they feel that this model of doing science will create better scientists (e.g. improve communication skills) and make the resulting science more useful and relevant; indeed, they reported that this model of knowledge creation can be paradigm shifting. CONCLUSIONS This study highlights both the unique contributions that knowledge-users can offer to knowledge creation as well as the challenges of trying to unify members from such different communities (policy/advocacy and biomedical science). While our steering committee has a strong conceptual grasp on IKT and vision for their contributions, execution is not without challenges. There remains a real need to develop more touch points and opportunities for collaboration if true integration is to be achieved. Despite the obstacles, the GET-FACTS IKT model represents a new approach to knowledge creation in Canadian biomedical research and can help foster a culture of openness to participant involvement.

中文翻译:

“探索综合知识翻译中的知识用户体验:对食物过敏原因和后果的生物医学调查”。

简明英语摘要 食物过敏是加拿大和其他高收入国家的一个严重公共卫生问题,因为它可能危及生命并严重影响个人及其家庭的生活质量。然而,关于其起源和决定因素以及治疗的最佳实践,仍然存在许多问题。为了解决这些问题,GET-FACTS 研究以生物医学研究中的一个新概念为中心:为了使这门科学有用,知识创造必须包括与知识用户的有意义的互动。有了这个,知识用户出现在研究的每个阶段,并且是至关重要的、中心的和平等的贡献者。本研究从知识用户的角度反映了该旅程的早期部分。我们采访了 GET-FACTS 指导委员会的所有非科学家成员,他们代表加拿大处理有关食物过敏的患者宣传和政策的组织。指导委员会成员清楚地认识到,科学家和知识使用者对将知识付诸实践负有同等责任,以及在整个研究过程中咨询和整合知识使用者的重要性。他们也对 GET-FACTS 集成流程寄予厚望;这种从事科学的模式将创造出更好的科学家(例如提高沟通技巧)并使科学产出更有用和相关。我们的工作既突出了知识用户可以为知识创造提供的独特贡献,也突出了试图统一来自不同社区(政策/宣传和生物医学科学)的成员的挑战。如果要实现真正的整合,仍然需要开发更多的接触点和合作机会。尽管存在障碍,但这种模式可以帮助改变生物医学界创造知识的方式。摘要 ᅟ。背景尽管食物过敏性疾病的负担,许多关于其起源、决定因素和治疗最佳实践的问题仍然存在。GET-FACTS(遗传学、环境和疗法:食物过敏临床耐受性研究)研究旨在解决这些问题,围绕生物医学研究中的一个新概念展开:为了使这门科学有用,知识创造必须包括与知识用户的有意义的互动,称为综合知识翻译(IKT)。在 IKT 中,知识用户出现在研究的每个阶段,并且是至关重要的、核心的和平等的贡献者。本文通过从知识用户的角度反思这一旅程的开始,为这种令人兴奋的研究形式做出了贡献。方法 在 5 年 GET-FACTS 项目的第 2 年,对 GET-FACTS 指导委员会的所有 (n = 9) 非科学家成员进行了半结构化深度访谈,代表加拿大处理患者宣传和政策的组织关于食物过敏。成绩单由演绎和归纳发展的主题编码和组织。结果 指导委员会成员明确表示,科学家和知识使用者对将知识转化为行动负有同等责任,以及在整个研究过程中咨询和整合知识使用者的重要性。总体而言,这些知识用户对 GET-FACTS IKT 流程抱有很高的期望;他们认为这种从事科学工作的模式将培养出更好的科学家(例如提高沟通技巧)并使由此产生的科学更加有用和相关;事实上,他们报告说这种知识创造模式可以改变范式。结论 本研究强调了知识用户可以为知识创造提供的独特贡献,以及试图统一来自不同社区(政策/宣传和生物医学科学)的成员所面临的挑战。虽然我们的指导委员会对 IKT 的概念有很强的把握并对其贡献有远见,但执行并非没有挑战。如果要实现真正的整合,仍然需要开发更多的接触点和合作机会。尽管存在障碍,GET-FACTS IKT 模型代表了加拿大生物医学研究中知识创造的一种新方法,并且可以帮助培养对参与者参与的开放文化。
更新日期:2019-11-01
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