Participatory Research Fund Projects 2024-25

“They Don’t Believe You”: neurodivergent adults’ experiences of diagnosis and the application of computer-aided diagnostic techniques

Led by Dr Ekaterina Ivanova (School of Electronic Engineering and Computer Science)

Drawing on a participatory research lens, this project sought to work with neurodivergent adults to identify the challenges of diagnosis: their experiences of the time commitment, complexity, and their wellbeing during the process. Led by an autistic researcher, the project team ran inclusive workshop sessions with activities to encourage discussion of these important topics. Secondly, they also explored the suitability of computer- and robotic-aided techniques in the diagnosis of neurodivergent conditions based on the analysis of motion patterns. Would neurodivergent people have trust in such alternative tools? Would a lesser reliance on verbal communication be beneficial or a hinderance? To help community members think practically and try such a system out, the team invited participants to their robotics lab to take part in a user-centred development of the system, where they could use their interface through a simple motor coordination task. This research could provide a starting point for developing future diagnostic systems, with input from community members, clinicians and researchers.

The project was led by Dr Ekaterina Ivanova and Daniel Gill, in collaboration with Professor Etienne Burdet at Imperial College.

Projects Partners

• Professor Etienne Burdet (Imperial College London)
• MINDS network (Mutual Inclusion through Neurodiversity in Science)
• RESPECT 4 Neurodevelopment network
• National Autistic Society

Bridging the gap: Enhancing mental health support for neurodivergent young people

Led by Dr Giorgia Michelini (School of Biological and Behavioural Sciences)

This participatory study built the foundation for a new approach to promptly identify and support mental health challenges in neurodivergent young people, reflecting their lived experiences. Working in co-production with neurodivergent young people and parents/carers, the project team aimed to evaluate how mental health assessments could better recognise their lived experiences, and co-design a follow-on project to develop a new assessment tool to identify mental health challenges with/for neurodivergent young people. Co-dissemination activities further promoted greater awareness of neurodivergent young people’s mental health among healthcare professionals, educators, researchers, policymakers and the public. Ultimately, the outputs of this and follow-on co-produced projects promise to improve early identification of neurodivergent young people’s mental health challenges and influence new policies and clinical guidelines.

This project was led by Dr Giorgia Michelini (School of Biological and Behavioural Sciences) in collaboration with Emma Hayashibara (SBBS), Chiara Caserini (SBBS), Dr Georgina Hosang (Wolfson Institute of Population Health) and Dr Laura Havers (Wolfson Institute of Population Health).

Project Partners

• Embracing Complexity

“Voices”, co-produced psychosis world

Led by Dr Viet-Xuan (Elen) Williams (Wolfson Institute of Population Health)

This innovative and pioneering project sought to help reduce stigma facing voice-hearers. It sought to raise awareness of psychosis symptoms, which research shows reduces duration of untreated psychosis thereby improving outcomes. The project team achieved this through the co-production of an artistic representation of psychosis, creating a soundworld evoking warmth and kindness towards voice-hearers. The sonically exciting soundworld will appeal to young adults from ethnic minorities, who are most at risk from psychosis. The soundworld created was a few minutes long, making it accessible and easily-shared through social media. A longer version will be created for performance at other events including festivals, as well as broadcast through national radio/podcasts.

The project team worked with voice-hearers based in East London and a critically-acclaimed Tower Hamlets composer Iain Chambers with a track record in creating award-winning soundworlds. Co-production workshops were co-facilitated by Dr Williams (a Tower Hamlets GP whose two brothers have experienced psychosis, bringing over 10 years of co-production research experience) and Dr Shoham (QMUL lecturer, Hackney psychiatrist highly skilled in working with voice-hearers) alongside CoreArts, an established Hackney-based not-for-profit running successful musical and creative programmes for voice-hearers. 

Project Partners

• Dr Williams (Tower Hamlets GP)
• CoreArts
• Iain Chambers
• Rainy Days Festival

Co-developing patient and public facing activities to explain large language models and how they are used in health research

Led by Dr Mel Ramasawmy (Wolfson Institute of Population Health)

This project formed part of an interdisciplinary collaboration between researchers and a PPIE collaborator from QMUL, KCL, and Brighton and Sussex Medical School. The project team aimed 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.

The project team conducted four pilot workshops with PPIE contributors with the assistance of Social Action for Health (SAfH). These PPIE contributors are representative of the demographic of Tower Hamlets in terms of ethnic group, age and social background. During these workshops the project team introduced the basics of LLMs and started co-producing a script and drawings for an LLM explainer. The project built on this pilot work to co-produce, test, and refine an animated resource to support AI literacy. This animation supports both general education about LLMs, and PPIE work in research which uses LLMs.

The project was led by Dr Mel Ramasawmy.

Project Partners

• King's College London
• Brighton and Sussex Medical School
• Social Action for Health
• Really Bright Media

An insight into the experiences of Bengali women in their oral and facial trauma recovery journey

Led by Professor Sharan Sidhu (Institute of Dentistry)

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 aimed to capture the voices and narratives of women of Bengali origin as this is the most commonly presenting ethnic minority group in the research team’s clinics.

They aimed 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 desired was to break down barriers, improve support and develop interventions in the future that are meaningful for this group/community. 

This project was led by Professor Sharan Sidhu, in collaboration with Dr. Ophelia Phillips, Maria Langridge, and Leigh Simpson (North East London NHS Foundation Trust).

Project Partners

• The Royal London Dental Hospital

Mapping contemporary British South Asian theatre

Led by Jaswinder Blackwell-Pal (School of English and Drama)

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.  Drawing on this backdrop, this project sought to map the new landscape of British South Asian theatre by co-producing research with playwrights and their audiences. It sought to explore and document how they co-create meaning in these plays together. The project explored 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. 

Eight writers were 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 then participated in a series of ‘long table’ discussions with audiences, a format designed by Professor Lois Weaver to blend theatricality with public engagement. The research was documented through a publicly available podcast series.

The project was led by Dr Jaswinder Blackwell-Pal, in collaboration with Rukhsama Ahmed and Shiroma Silva.

Project Partners

• Mohamed-Zain Dada
• Azma Dar
• Sonali Bhattacharyya
• Iman Qureshi
• Neil D'Souza
• Waleed Akhtar
• Satinder Chohan
• Naylah Ahmed