Foundational guidelines for enhancing neurotechnology research and development through end-user involvement

Abstract

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.

Keywords: co-development; engagement; ethics; involvement; neurotechnology.