通过终端用户参与加强神经技术研究和发展的基本指南。

Amparo Güemes, Tiago da Silva Costa, Tamar R Makin
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引用次数: 0

摘要

神经技术正日益与我们的日常生活、身体和精神状态融为一体。随着神经技术的普及和影响的增长,我们也有责任确保我们理解它对最终用户的特殊影响,以及更广泛的伦理和社会影响。让最终用户和其他利益相关者参与到神经技术的开发中,即使是在其概念的早期阶段,也将帮助我们更好地围绕这些严肃的考虑来设计,并提供更有影响力的技术。有许多不同的术语和框架来阐明让最终用户参与技术开发生命周期的概念,例如:“公众和患者参与和参与”(PPIE)、“生活体验”、“共同设计”、“共同生产”。在这里,我们利用PPIE框架来制定明确的指导方针,以实现当前和未来神经技术最终用户的强大参与过程,重点是患者参与。我们为有兴趣开发和实施神经技术PPI策略的研究人员和工程师提供最佳实践指导。我们整合来自各种在线资源的建议,以指导各个团队(及其资助者)制定自己的有意义的参与方法。在介绍了用户参与的实际和概念上的好处之后,我们首先引导读者制定一个建立自己的过程的一般策略。然后,我们帮助读者描绘出他们的相关利益相关者,并就如何考虑用户多样性和代表性提供建议。我们还就如何量化审计业务的成果提供建议,并提供一份检查清单,以确保各阶段的透明度和问责制。总体目标是建立黄金标准的方法,以确保患者和公众的见解处于我们科学探究和产品开发的最前沿。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Foundational guidelines for enhancing neurotechnology research and development through end-user involvement.

Neurotechnologies are increasingly becoming integrated with our everyday lives, our bodies and our mental states. As the popularity and impact of neurotechnology grows, so does our responsibility to ensure we understand its particular implications on its end users, as well as broader ethical and societal implications. There are many different terms and frameworks to articulate the concept of involving end users in the technology development lifecycle, for example: 'Public and Patient Involvement and Engagement' (PPIE), 'lived experience', 'co-design' or 'co-production'. The objective of this tutorial is to utilise the PPIE framework to develop clear guidelines for implementing a robust involvement process of current and future end-users in neurotechnology, with emphasis on patient involvement. After an introduction that coveys the tangible and conceptual benefits of user involvement, we first guide the reader to develop a general strategy towards setting up their own PPIE process. We then help the reader map out their relevant stakeholders and provide advice on how to consider user diversity and representation. We also provide advice and tools on how to quantify the outcomes of the engagement. We consolidate advice from various online sources to orient individual teams (and their funders) to carve up their own approach to meaningful involvement. Key outputs include a stakeholder mapping tool, methods to measure the impact of engagement, and a structured checklist for transparent reporting. Enabling end-users and other stakeholders to participate in the development of neurotechnology, even at its earliest stages of conception, will help us better navigate our design around ethical, social, and usability considerations, and deliver more impactful technologies. The overall aim is the establishment of gold-standard methodologies for ensuring that patient and public insights are at the forefront of our scientific inquiry and product development.

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