Guidelines for Public and Patient Involvement in Neurotechnology in the United Kingdom

Amparo Guemes Gonzalez,Tiago da Silva Costa, Tamar Makin

arxiv(2024)

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摘要
Neurotechnologies are increasingly becoming integrated in our everyday lives, our bodies and minds. As the popularity and impact of neurotech grows, so does our responsibility to ensure we understand its particular ethical and societal implications. 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 these serious considerations, and deliver more impactful technologies. There are many different terms and frameworks to articulate the concept of involving end users in the technology development lifecycle: 'Public and Patient Involvement and Engagement' (PPIE), 'lived experience', 'co-design', 'co-production'. What is lacking are clear guidelines for implementing a robust PPIE process in neurotechnology. While general advice is available online, it is down to individuals (and their funders) to carve up their own approach to meaningful involvement. Here we present guidance for UK-based researchers and engineers to conduct PPI for neurotechnology. The overall aim is the establishment of gold-standard PPIE methodologies in the neurotechnology space that bring patient and public insights at the forefront of our scientific inquiry and product development.
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