Miller Caroline L, Mott Kathy, Cousins Michael, Miller Stephanie, Johnson Anne, Lawson Tony, Wesselingh Steve
South Australian Health and Medical Research Institute (SAHMRI), North Terrace, Adelaide, South Australia, 5000, Australia.
School of Public Health, University of Adelaide, Adelaide, Australia.
Health Res Policy Syst. 2017 Feb 10;15(1):9. doi: 10.1186/s12961-017-0171-2.
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.
在医学研究的许多领域，消费者参与的优质实践仍处于起步阶段。南澳大利亚健康与医学研究所（SAHMRI）在其发展早期就发现了将循证驱动的消费者和社区参与融入其运营的机会。
SAHMRI与健康消费者联盟及消费者在证据生成方面展开合作。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。采用了迭代式混合方法定性过程来生成消费者参与框架。这一过程包括文献综述，随后对消费者参与方面的专家和首席医学研究人员进行半结构化访谈、小组讨论以及在健康消费者联盟的协助下与伙伴关系指导委员会举行共识研讨会。
文献显示缺乏关于有效消费者参与方法的证据。据报告，四个组织维度有助于取得成功，即治理、基础设施、能力和宣传。通过利益相关者访谈确定的关键主题包括持续领导力、切实利益、参与策略应多样化、资源配置、道德层面以及挑战。共识研讨会产生了一个框架和切实可行的策略。
消费者参与健康和医学研究的全面实例有限。关于哪些技术有效的文献记载研究很少。这个与消费者合作开发的循证框架正在被整合到一个开展各种研究项目的健康与医学研究所。该框架是对围绕有意义的消费者参与的证据基础的贡献，也是供其他研究机构使用的模板。
