Current projects
6 Projects were funded as part of the 2024/25 Participatory Research Fund. You can read more about the projects below.
"They don't believe you": neurodivergent adults' experiences of diagnosis and the application of computer-aided diagnostic techniques
Dr Ekaterina Ivanova (School of Electronic Engineering and Computer Science), Daniel Gill (School of Electrical Engineering and Computer Science), Prof Etienne Burdet (Imperial College London)
Many neurodivergent adults report negative experiences with the diagnostic process, citing challenges related to time commitment, complexity, and personal wellbeing. Through a participatory research approach, these challenges will be explored in collaboration with neurodivergent adults. Inclusive workshop sessions, led by an autistic researcher, will incorporate activities designed to facilitate discussions on these key issues.
In addition, the suitability of computer- and robotic-aided techniques for diagnosing neurodivergent conditions will be examined, focusing on the analysis of motion patterns. Considerations include the level of trust neurodivergent individuals may have in such tools and whether a reduced reliance on verbal communication would be beneficial or limiting. To enable direct engagement with these technologies, community members will be invited to a robotics lab to participate in a user-centred development process, testing the system through a simple motor coordination task. This research aims to provide a foundation for the development of future diagnostic systems, incorporating insights from community members, clinicians, and researchers.
Despite ongoing technological advancements in the diagnosis of neurodivergent conditions, limited attention has been given to whether these innovations align with the needs and preferences of the community. Engaging neurodivergent individuals from the early stages of development ensures that technology is designed both for and with the people it seeks to support, prioritizing their lived experiences and specific requirements.
Co-developing patient and public facing materials to explain large language models and how they are used in health research
Dr Mel Ramasawmy (Wolfson Institute of Population Health), Elizabeth Remfry (William Harvey Research Institute) Ceri Durham (Social Action for Health), Jaya Chaturvedi (King’s College London), Dr Elizabeth Ford (Brighton and Sussex Medical School), Sarah Markham (King’s College London)
This project forms part of an interdisciplinary collaboration between researchers and a PPIE collaborator from QMUL, KCL, and Brighton and Sussex Medical School. The project aims to co-develop an animated resource to explain how large language models (LLMs) work and their use in healthcare for patients and the wider public. LLMs have a variety of applications in health including communication, documentation, and risk prediction. Research has highlighted clinicians and patients are using LLMs as a form of health advice and to provide a second opinion.
It is key that members of the public understand how LLMs work to: foster safe use of these tools; build trust in their use; and to facilitate meaningful patient and public involvement and engagement (PPIE) in LLM research. Much of the existing materials developed to explain LLMs are highly technical and assume some prior level of knowledge of artificial intelligence (AI). They are also mainly not focused on the use of LLMs in health.
Four pilot workshops are currently being conducted with PPIE contributors, with support from Social Action for Health (SAfH). These contributors reflect the demographic composition of Tower Hamlets in terms of ethnic group, age, and social background. The workshops have introduced foundational concepts of LLMs, and the process of co-producing a script and drawings for an LLM explainer is underway. Building on this pilot work, the proposed project aims to co-produce, test, and refine an animated resource designed to enhance AI literacy. This animation will serve both as a general educational tool about LLMs and as a resource for PPIE initiatives in research involving LLMs.
Bridging the gap: Enhancing mental health support for neurodivergent young people by centring lived experience
Dr Giorgia Michelini, Emma Hayashibara, Chiara Caserini (School of Biological and Behavioural Sciences), Dr Georgina Hosang, Dr Laura Havers (Wolfson Institute of Population Health)
Neurodivergent individuals, including those with neurodevelopmental traits and diagnoses such as autism and ADHD, experience significantly higher rates of mental health challenges, including depression and anxiety, compared to neurotypical individuals. These challenges are particularly prevalent during adolescence and young adulthood, impacting educational, occupational, and social outcomes. However, neurodivergent young people encounter substantial barriers in accessing timely mental health support within NHS, community, and school settings.
Previous work (CPE Participatory Grant 2023) identified a key factor contributing to these disparities: mental health challenges manifest and are experienced differently in neurodivergent young people compared to neurotypical individuals. Despite this, awareness of these differences remains limited, and existing clinical tools, such as diagnostic interviews, do not adequately account for how mental health challenges present in neurodivergent individuals.
The proposed participatory study aims to establish the foundation for a new approach to identifying and supporting mental health challenges in neurodivergent young people, ensuring their lived experiences are reflected. In co-production with neurodivergent young people and parents/carers, the study will evaluate ways to improve mental health assessments to better recognise these experiences (Aim 1) and collaboratively design a follow-on project to develop a new assessment tool tailored for neurodivergent young people (Aim 2). Co-dissemination activities will further enhance awareness among healthcare professionals, educators, researchers, policymakers, and the public regarding the mental health needs of neurodivergent young people (Aim 3).
The outputs of this and future co-produced projects aim to improve the early identification of mental health challenges in neurodivergent young people and inform the development of new policies and clinical guidelines.
"Voices", co-produced psychosis soundworld
Viet-Xuan Ellen Williams (Wolfson Institute for Population Health), Dr Natalie Shoham (Wolfson Institute for Population Health), Winston Obi (CoreArts), Iain Chambers (Composer)
This innovative and pioneering project aims to reduce the stigma faced by voice-hearers. Awareness of psychosis symptoms will be raised, contributing to a reduction in the duration of untreated psychosis, which research indicates improves outcomes. This will be achieved through the co-production of an artistic representation of psychosis, creating a soundworld that evokes warmth and kindness towards voice-hearers. Designed to be sonically engaging, the soundworld will specifically appeal to young adults from ethnic minorities, who are at the highest risk of experiencing psychosis. A short version, a few minutes in length, will be created for accessibility and easy sharing on social media, while a longer version will be produced for performances at festivals and other events, as well as for national radio and podcast broadcasts.
Voice-hearers in East London will collaborate on this project alongside a critically acclaimed Tower Hamlets composer known for creating award-winning soundworlds. Co-production workshops will be co-facilitated by Dr. Williams, a Tower Hamlets GP with over a decade of co-production research experience and personal connections to psychosis through family, and Dr. Shoham, a QMUL lecturer and Hackney-based psychiatrist experienced in working with voice-hearers. These workshops will also involve CoreArts, a Hackney-based not-for-profit organization that runs successful musical and creative programs for voice-hearers.
Voice-hearers participating in the project will benefit by creating a sonic representation of their inner experiences, fostering greater understanding among others. Their involvement will contribute to reducing stigma surrounding psychosis while providing a platform to establish or enhance professional profiles. Participants will also receive lifetime membership to the Performing Rights Society, enabling them to earn royalties from the soundworld beyond the initial compensation for their time.
An insight into the experiences of Bengali women in their oral and facial recovery journey
Prof Sharan Sidhu (Institute of Dentistry), Dr Ophelia Phillips, Maria Langridge, Leigh Simpson (North East London NHS Foundation Trust),
Recovery from traumatic facial injuries and rebuilding lives is challenging and lengthy. The Royal London Dental Hospital’s facial trauma team consists of clinicians from QMUL, Barts Health and North-East London Foundation Trust (NELFT). Although care quality is subject to compliance frameworks, patients’ perspectives are not routinely considered and there is a particular gap in understanding diverse populations’ experiences of intersectionality during recovery. This is especially relevant to the multicultural locality of the Dental Institute/Hospital in Whitechapel.
It is imperative that we desist from capturing Eurocentric data, towards better understanding our diverse populations’ experiences, thereby influencing positive, equitable health outcomes. BAME trauma survivors are at high risk of poor health, poor care, being marginalised, social isolation etc and this is under-researched.
This participatory action project aims to capture the voices and narratives of women of Bengali origin as this is the most commonly presenting ethnic minority group in our clinics. We aim to gather rich experiential data of patients’ lived experiences about all aspects of recovery (physical, spiritual, psychological and social), to co-design a research project for funding applications addressing their priority needs. The ultimate goal/change is to break down barriers, improve support and develop interventions in the future that are meaningful for this group/community.
The specific aims are to:
- gain an insight into and understanding regarding experiences/perspectives of care and recovery in these trauma survivors
- identify any barriers to support their recovery journey
- highlight areas for future trauma-informed research with diverse patient populations, developing the research questions and trialling interventions.
Mapping contemporary British South Asian theatre
Dr Jaswinder Blackwell-Pal (Lecturer in Drama at QMUL and BBC New Generation Thinker 2024), Rukhsana Ahmad (playwright, founder of Kali Theatre and former QMUL Royal Literary Fellow) and Shiroma Silva (BBC World Service producer/presenter and Kali board member)
The past decade has seen a resurgence of British South Asian theatre, with a new generation of playwrights, whose work speaks to contemporary themes and stories, coming into the spotlight. The success of these plays is notable given the relative lack of British Asian plays in the decades prior, with the Guardian lamenting in 2008 ‘Where are our modern British Asian Plays?’. Similarly, it has been 20 years since any sustained academic research into this field.
This project maps the new landscape of British South Asian theatre by co-producing research with playwrights and their audiences. It will explore and document how they co-create meaning in these plays together. The project explores the materials, experiences and theatrical forms employed by these emerging writers, alongside questions of how these texts are being interpreted and understood by British Asian audiences today.
8 writers will be asked to trace the influences, formal and thematic qualities of their own work, and consider their plays in the context of a pre-existing British Asian theatre cannon. The writers will then participate in a series of ‘long table’ discussions with audiences, a format designed by Professor Lois Weaver to blend theatricality with public engagement. The research will be documented through a publicly available podcast series.