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 emphasis on 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.
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http://dx.doi.org/10.1088/1741-2552/adac0d | DOI Listing |
Am J Sports Med
January 2025
Rothman Orthopaedic Institute, Philadelphia, Pennsylvania, USA.
Background: Ruptures of the distal biceps tendon (DBT) can affect the range of motion and strength of the elbow, raising concerns for patients seeking to restore normal function and engage in their regular activities, particularly returning to previous levels of sport participation.
Purpose: To characterize and assess the rate and timing of return to sport (RTS) after DBT repair.
Study Design: Systematic review; Level of evidence, 4.
Clin Rheumatol
January 2025
Department of Medical Laboratory Science, Faculty of Health Sciences, Hokkaido University, Sapporo, Hokkaido, Japan.
Microscopic polyangiitis (MPA) affects small and medium vessel, which sometimes leads to arterial aneurysms. In English database, only 15 reports refer to ruptured aneurysms in MPA. We experienced a fatal case with MPA who developed multiple visceral aneurysms, resulting in rupture of the hepatic aneurysm.
View Article and Find Full Text PDFNeuroinformatics
January 2025
Laboratory for Applied Genomics and Bioinnovations, Instituto Oswaldo Cruz - Fiocruz, Rio de Janeiro, RJ, Brazil.
Multiple sclerosis (MS) is a neurological disease causing myelin and axon damage through inflammatory and autoimmune processes. Despite affecting millions worldwide, understanding its genetic pathways remains limited. The choroid plexus (ChP) has been studied in neurodegenerative processes and diseases like MS due to its dysregulation, yet its role in MS pathophysiology remains unclear.
View Article and Find Full Text PDFRheumatol Int
January 2025
Department of Rheumatology, Clinical Immunology, Geriatrics and Internal Medicine, Medical University of Gdansk, Gdansk, Poland.
Sjogren's disease (SjD) is a chronic and disabling autoimmune disease, predominantly characterized by dryness of the mouth and eyes, resulting from lymphocytic infiltration of exocrine glands. While these are the most prominent symptoms, extra-glandular manifestations are also common. Studies suggest that up to 70% of SjD patients experience neurological symptoms, which interestingly often precede the hallmark dryness.
View Article and Find Full Text PDFEur Arch Otorhinolaryngol
January 2025
Department of Pediatric and Adolescent Medicine, Haukeland University Hospital, Bergen, Norway.
Introduction: Exercise- Induced Laryngeal Obstruction (EILO) can lead to disabling exercise related dyspnea and hamper participation in physical activity. In this study, we aimed to investigate the effects of a standardized speech therapy protocol as treatment for EILO.
Methods: Patients diagnosed with EILO at our institution were invited to participate.
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