Integrating consumer engagement in health and medical research - an Australian framework.
Integrating consumer engagement in health and medical research - an Australian framework.
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DOI：
10.1186/s12961-017-0171-2
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发表时间：
2017-02-10
影响因子：
4
通讯作者：
Wesselingh S
中科院分区：
文献类型：
--
作者：
Miller CL;Mott K;Cousins M;Miller S;Johnson A;Lawson T;Wesselingh S
在医学研究的许多领域，消费者参与的质量实践仍处于初级阶段。南澳大利亚健康和医学研究所(SAHMRI)在其发展初期就确定了将以证据为导向的消费者和社区参与纳入其业务的机会。SAHMRI与健康消费者联盟和消费者在证据生成方面进行了合作。为该项目成立了一个由研究人员和消费者组成的伙伴关系指导委员会。使用迭代的混合方法定性过程来生成消费者参与的框架。这一过程包括对文献进行审查，然后对消费者参与方面的专家和主要医学研究人员进行半结构化访谈、小组讨论和由健康消费者联盟推动的与伙伴关系指导委员会的协商一致讲习班。这些文献揭示了关于有效的消费者参与方法的证据匮乏。据报告，有四个组织层面有助于取得成功，即治理、基础设施、能力和宣传。通过与利益相关者的面谈确定的关键主题包括持续的领导、切实的利益、参与战略应该多样化、资源分配、道德层面和挑战。协商一致研讨会提出了一个框架和切实的战略。消费者参与健康和医学研究的全面例子有限。关于哪些技术是有效的，几乎没有书面研究。这个以证据为导向的框架是与消费者合作开发的，正在与一家健康和医学研究机构整合，该研究所拥有各种研究计划。这一框架是对围绕有意义的消费者参与的证据基础的贡献，并作为其他研究机构使用的模板。
Quality practice of consumer engagement is still in its infancy in many sectors of medical research. The South Australian Health and Medical Research Institute (SAHMRI) identified, early in its development, the opportunity to integrate evidence-driven consumer and community engagement into its operations. SAHMRI partnered with Health Consumers Alliance and consumers in evidence generation. A Partnership Steering Committee of researchers and consumers was formed for the project. An iterative mixed-method qualitative process was used to generate a framework for consumer engagement. This process included a literature review followed by semi-structured interviews with experts in consumer engagement and lead medical researchers, group discussions and a consensus workshop with the Partnership Steering Committee, facilitated by Health Consumer Alliance. The literature revealed a dearth of evidence about effective consumer engagement methodologies. Four organisational dimensions are reported to contribute to success, namely governance, infrastructure, capacity and advocacy. Key themes identified through the stakeholder interviews included sustained leadership, tangible benefits, engagement strategies should be varied, resourcing, a moral dimension, and challenges. The consensus workshop produced a framework and tangible strategies. Comprehensive examples of consumer participation in health and medical research are limited. There are few documented studies of what techniques are effective. This evidence-driven framework, developed in collaboration with consumers, is being integrated in a health and medical research institute with diverse programs of research. This framework is offered as a contribution to the evidence base around meaningful consumer engagement and as a template for other research institutions to utilise.