Güemes Amparo, Costa Tiago da Silva, Makin Tamar R
Electrical Engineering Division, Department of Engineering, University of Cambridge, Cambridge, United Kingdom.
Newcastle University Translational and Clinical Research Institute, Newcastle upon Tyne, United Kingdom.
J Neural Eng. 2025 Feb 4;22(1). doi: 10.1088/1741-2552/adac0d.
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.
神经技术正日益融入我们的日常生活、身体和精神状态。随着神经技术的普及和影响不断扩大，我们确保理解其对终端用户的特殊影响以及更广泛的伦理和社会影响的责任也在增加。有许多不同的术语和框架来阐述让终端用户参与技术开发生命周期的概念，例如：“公众和患者参与及介入”（PPIE）、“生活经验”、“共同设计”或“共同生产”。本教程的目的是利用PPIE框架制定明确的指导方针，以实施当前和未来神经技术终端用户的有力参与过程，重点是患者参与。在介绍了用户参与的实际和概念性好处之后，我们首先引导读者制定一个建立自己的PPIE过程的总体策略。然后，我们帮助读者梳理出相关利益相关者，并就如何考虑用户多样性和代表性提供建议。我们还提供关于如何量化参与结果的建议和工具。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）规划出自己的有意义参与方式。关键成果包括一个利益相关者映射工具、衡量参与影响的方法，以及一份用于透明报告的结构化清单。让终端用户和其他利益相关者参与神经技术的开发，即使在其构思的最早阶段，将有助于我们在伦理、社会和可用性考虑方面更好地进行设计，并推出更具影响力的技术。总体目标是建立黄金标准方法，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前沿。
