Abstract Background/Aims Digital technologies, including mobile applications, wearables, virtual reality and AI-driven platforms, are rapidly emerging to support chronic pain management. Despite this, many technologies are designed without meaningful collaboration alongside people living with pain, limiting usability, trust and equity. To address this gap, the UKRI Chronic Pain Neurotechnology Network + (CPNN+) funded the creation of the National Co-Development Hub to promote and support meaningful public and patient involvement in digital-health innovations for pain. The project aims to build a cross-sector network, co-develop an accessible online hub highlighting best practice in co-design, and embed lived-experience perspectives throughout. Methods Two full-day PPIE workshops were held at the University of East Anglia in January 2025. Ten adults living with diverse chronic pain conditions (fibromyalgia, inflammatory arthritis, osteoarthritis, lupus, chronic pelvic pain) participated (age 25-68 years; M:F 3:6 with one transgender participant). Participants used relevant digital technologies, including virtual reality systems, wrist-worn wearables, AI-based applications and mobile symptom-tracking tools, before taking part in focus groups, filmed semi-structured interviews and feedback sessions regarding the hub’s website. Audio recordings were transcribed and underwent inductive thematic analysis. Results Across focus groups, three overarching themes were identified: trust and transparency, empowerment through representation, and ease of use through inclusivity and adaptability. Participants highlighted requirements for openness in how digital tools are developed and used, expressing that technologies “miss the mark” because they are created about people with pain rather than with them. Technology was seen as a means of legitimising invisible symptoms through letting “the tech do the talking when words fail”, and improving understanding amongst professionals “who often don’t see beyond the diagnosis”. Participants expressed frustration with complex or costly systems, advocating for frictionless designs that “just work” and are accessible regardless of ability or resource. They valued adaptive and personalised features, “a wearable that tells me I’ve done too much before I crash”, and highlighted the role of digital tools in reducing isolation by promoting social connection and belonging. One-to-one interviews added further depth, capturing individual journeys that reinforced the need to avoid one-size-fits-all designs and tailor approaches to unique experiences. Website feedback confirmed clarity and usability, and directly informed four key portals: Patient Portraits, Best Practices, Resources, and Contact J.T. has a flexible unpaid position as Chief Medical Officer for Revolve Labs Ltd. Consultancies; J.T. has received consultancy fees from Revolve Labs Ltd for education and virtual reality consulting. Honoraria; J.T. has received honoraria for non-promotional speaking commitments for Novartis. Grants/research support; J.T has received research funding from British Society for Rheumatology, NIHR, EPSRC and Revolve Labs Ltd.
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Jordan Tsigarides
University of East Anglia
Lara D. Veeken
University of East Anglia
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Jordan Tsigarides (Wed,) studied this question.
synapsesocial.com/papers/69f2f1be1e5f7920c63875d6 — DOI: https://doi.org/10.1093/rheumatology/keag121.306
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