Authors:

Guemes, A., DE Silva, T., MAKIN, T.R.

Reference:

Year of publication:

In Press

CBU number:

9123

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. 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, for example: 'Public and Patient Involvement and Engagement' (PPIE), 'lived experience', 'co-design', 'co-production'. Here we utilise the PPIE framework to develop clear guidelines for implementing a robust involvement process of current and future end-users in neurotechnology, with an emphasise of patient involvement. We present best practice guidance for researchers and engineers who are interested in developing and conducting a PPI strategy for their neurotechnology. We consolidate advice from various online sources to orient individual teams (and their funders) to carve up their own approach to meaningful 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 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 on how to quantify the outcomes of the engagement, as well as a check-list to ensure transparency and accountability at various stages. 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.