QM Participatory Research Fund

Project lead: Abigail Thomson, Wolfson Institute of Population Health

Youth mental health research is most effective when a diverse group of young people are actively included at every stage of the research process – from design through to dissemination. However, there is a recognised need to improve engagement with underrepresented youth, particularly those from communities with higher ethnic density or economic and social disadvantages, such as East London. The AMPLIFY network, co-created with young people, sought to facilitate the meaningful application of community-based participatory methods in current research for young people aged 16 to 18 within East London. Thus far, AMPLIFY has been successful in engaging underrepresented youth and exploring the challenges young people from East London face in engaging in research. Building on this work, the AMPLIFY team take forward learning to develop participatory research that addresses the issues and experiences of young people, with a focus on three core aspects: opportunities for participatory research, best practice, and legacy building.

There were several impacts of this project, both for young people, and for the researchers involved.  

Researchers 

• Best practice guide: This output will encourage mental health researchers working with young people to engage in best practice, based on the advice of the young people in this study, and support the involvement of young people who voices are rarely heard in research. We plan to monitor the impact of these resources - who uses them and how useful they find them – by inviting researchers to share details of their studies and how the resources will be used when they are downloaded online. We will also monitor usage through citations and website analytics.  
• Research Sessions: All researchers involved shared feedback on their involvement in the study. We have collated this feedback to determine the impact of young people’s involvement in the studies.  

Young People  

• AMPLIFY involvement: We carried out regular check-ins with young people in the group to ensure that the sessions were having a positive impact, or if they had any suggestions to improve their experience. We made amendments accordingly. 
• Training and Skills development: One of the largest impacts on young people is the payment they received for their involvement – but we wanted to offer incentives beyond this too. We provided opportunities for training, attending lectures and skills development. Their role in the group could also be added to CVs and UCAS applications for further employment and education
• Best practice guide: Though this resource is not for young people directly, the ultimate aim is to increase the accessibility of mental health research and ultimately generate positive impacts for underserved communities of young people. We will measure its impact as outlined above

Project lead: Dr Maggie Inchley, QMUL Drama and Half Moon Theatre Collaborative Project

Feeling Futures was a series of artist-led participatory workshops at QMUL that brought together diverse students from schools in Tower Hamlets and from across the university.  

This group co-designed a creative project around the themes of Transitions, which aimed to share experiences of life changes intergenerationally (whether that be in respect to education, career, environment, ambitions or emotions), and to foster mutual support.  

A final event, the creative collage, shared people's responses using verbatim performance and other creative techniques, including scene work, spoken-word poetry, movement, and filmed interview material. By creatively and democratically sharing everyone’s experiences of entering different phases of life, this work extended and developed support for the transitions that young people and young adults face as they pass through different stages and contexts of education, training and work. 

This project built upon last year’s delivery of Feeling Places, which QMUL Drama Department collaborated on with local partner Half Moon Theatre. Feeling Places was a psychogeography participatory project where young people from schools in Tower Hamlets creatively explored and documented how higher education spaces made them feel and how they could be improved to be more inclusive. 

Evaluation was done via pre- and post-evaluation forms. The young people expressed that through this project, they have begun to feel more confident in expressing their creative ideas and in working within a team environment. While they may feel a bit nervous about their future, they are less nervous than before. They feel more positive about their future and about the prospect of going to university. 100% of participants who completed the forms were definitely pleased to be a part of this project.  

The young people participants, in general: 

• Feel more hopeful about the future 
• Are expressing more interest in applying for university programs 
• Recognize the value in the arts/drama/theatre projects 
• Dream of making their loved ones proud 
• Stress over exam and academic pressures  
• Have not previously been encouraged to imagine the future 
• Have not considered what the long-term future might look like 
• Desire freedom and autonomy over choices 
• Are learning of new career paths 
• Can combine various, disparate interests into one career (like medicine and the arts, for example) 
• Are learning that they don’t need to have it all figured out 
• They are curious about what’s in store for them and how the climate crisis may factor into their futures 
• They have big aspirations (for example, to achieve fame or grow up to become a Prime Minister, a professional actor in West End musicals like Wicked, or be a professional footballer for Chelsea) 

Project Lead: Dr Francesca Cornaglia 

This project aimed to support artists in researching the key ingredients of their practice that are relevant to arts in health. As proposed, the research team organised 4 research workshops with a group of 9 artists based in East London and with at least 5 years of experience in this field. The workshops were of 2h and 15 min each, with a 15 min coffee break in the middle. They took place between May and June 2024. 

The team ran 2 networking meetings, one on 10^th May and one on 26^th June 2024. We shared our preliminary findings at the meeting on 26^th June with the contributions of participating artists. The team is still finalising data analysis and therefore they expect that the framework will be discussed at a networking meeting in the autumn (outside of the scope of this grant).

The project had a direct impact on our artists participating. They related the benefits of participation as enhancing their practice, contributing to reflective practice, and serving as a template for future forms of connection and reflective practice they may want to implement. 

The project also identified key ingredients that will help artists shape their arts activities towards maximising therapeutic potential. Some of the knowledge about the key ingredients has been already disseminated to our East London Arts-based social prescribing network. Further dissemination through the network and through academic publication will happen at the ned of analysis. 

Project Lead: Dr Lucy Johnson

Young black men (YBM) are a group that experience multiple, intersectional health inequalities  (Nazroo, 2003; Gilbert et al., 2016). YBM are more likely to DNA (did not attend) hospital appointments than other groups. This means there is a gap between the care that should be provided, and the care that is provided.  

This project consisted of a service evaluation that built on previous exploratory work undertaken in partnership between QMUL and Barts Health NHS Trust, alongside a broader 5-year, £1.3m NIHR-funded research study on health equity and quality improvement at QMUL (EQUALQI). Working with an East London based community partner, the project team’s aim was to use a participatory photovoice methodology to understand in more detail the barriers to hospital appointment attendance for YBM. Photovoice follows the principle that ‘images teach, pictures can influence policy, and community people ought to participate in creating and defining the images that shape healthful public policy’ (Wang, 1999: 186). By using photovoice, they hoped to facilitate young black men communicating the different barriers to care they experience, on their own terms.   

The end goal of this project was to combine academic, community and clinical knowledge to harness the power of photovoice. The project team sought to communicate the barriers YBM face when seeking healthcare to clinicians, policymakers and other decision makers. Through this, they hope to help make access to healthcare in East London more equitable.

Project Lead - Dr Ekaterina Ivanova & Daniel Gill

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. 

Project lead: Dr Giorgia Michelini in collaboration with Emma Hayashibara, Chiara Caserini, Dr Georgina Hosang and Dr Laura Havers

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 (Aim 1) and co-design a follow-on project to develop a new assessment tool to identify mental health challenges with/for neurodivergent young people (Aim 2). Co-dissemination activities further promoted greater awareness of neurodivergent young people’s mental health among healthcare professionals, educators, researchers, policymakers and the public (Aim 3). 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. 

Project Lead: Dr Viet-Xuan (Elen) Williams

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 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. sical and creative programmes for voice-hearers. 

Project Lead: Dr Mel Ramasawmy 

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

Project Lead: Prof Sharan Sidhu, in collaboration with Dr Opelia Phillips, Maria Langridge and 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 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

Project Lead: Dr Jaswinder Blackwell-Pal, in collaboration with Rukshama Ahmed and Shiroma Silva

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. 

Project Lead: Dr Heater McMullen

Young black men (YBM) are a group that experience multiple, intersectional health inequalities  (Nazroo, 2003; Gilbert et al., 2016). YBM are more likely to DNA (did not attend) hospital appointments than other groups. This means there is a gap between the care that should be provided, and the care that is provided.  

This project consists of a service evaluation that builds on previous exploratory work undertaken in partnership between QMUL and Barts Health NHS Trust, alongside a broader 5-year, £1.3m NIHR-funded research study on health equity and quality improvement at QMUL (EQUALQI). Working with an East London based community partner, our aim is to use a participatory photovoice methodology to understand in more detail the barriers to hospital appointment attendance for YBM. Photovoice follows the principle that ‘images teach, pictures can influence policy, and community people ought to participate in creating and defining the images that shape healthful public policy’ (Wang, 1999: 186). By using photovoice, we hope to facilitate young black men communicating the different barriers to care they experience, on their own terms.   

The end goal of this project is to combine academic, community and clinical knowledge to harness the power of photovoice. We will communicate the barriers YBM face when seeking healthcare to clinicians, policymakers and other decision makers. Through this, we hope to help make access to healthcare in East London more equitable.

Project Lead: Dr Stephen Hibbs

This East London based project will use participatory methods to explore and improve care for people living with sickle cell disease (SCD) who experience painful sickle cell crises. It builds on the PI’s ethnographic research study, funded by a Health Advances in Underrepresented Populations (HARP) Doctoral Clinical Fellowship, which investigates what constitutes good sicklecell crisis care and how this can be achieved.

Working in partnership with people living with SCD, healthcare professionals (HCPs), and creative practitioners, we seek funding to co-produce a forum theatre production and an accompanying documentary film about sickle cell crises.

Forum Theatre is a participatory method that invites audiences to intervene in dramatised scenes of oppression to explore alternative strategies and outcomes. This project thus aims to:

- Surface diverse forms of knowledge (lived knowledge and professional knowledge);

- Facilitate dialogue and collective problem-solving between people living with SCD and HCPs;

- Create new understanding of what good crisis care means in practice for HCPs and people living with SCD;

- Contribute to long-term change in healthcare training and delivery in sickle cell care.

The planned documentary film will:

• capture the collaborative process of creating the theatre production
• provide a resource for future advocacy, education and research.

This project uses creative co-production in multiple ways: a mode of inquiry, dissemination, and research impact. It will extend and showcase the transformative potential of participatory methods to critique assumptions, reframe power relations, and produce useful knowledge around sickle cell as a complex under-researched health condition.

Project lead: Dr Sara Paparini

Between 2023 and 2024, a team of 4 academic, 4 clinical and 11 public co-applicants worked together on a public-academic partnership-building project funded by NIHR, named The Partnership for Black People’s Health (NIHR205178), (also known as ‘The Partnership’). The Partnership established a community of practice for patient and public involvement and engagement (PPIE) activities to understand the health  nd health research priorities with Black communities. This new project builds directly on the insights from these activities with over 200 Black community members in Birmingham, London and Nottingham.

Whilst there were a range of calls to action, for this project we wish to focus on the need to improve learning amongst academics on best approaches and methodologies for public engagement with Black communities. The project for this new application thus consists of the establishment of a Panel for Black People’s Health in which current community members of the Partnership will organise workshops for QMUL academics, so the two groups can come together to: 1) co- create new research projects or, 2) adapt aspects of current research projects taking place at QMUL that pertain to Black People’s Health.

To better integrate marginalised and minoritised communities into existing healthcare and health research systems, it is vital to understand communities as designers of innovations that benefit them. For this application we focus on demonstrating and acknowledging respect to the ways different Black communities are developing their own approaches to complex health issues and their needs in relation to health research participation and collaboration with academics.

The project aims to create dialogue regarding the enabling and hindering factors for co-creation and co-production experienced by health research institutions and community-based organisations (CBOs) when designing and implementing health studies aimed at improving Black People's Health, or health issues disproportionately impacting Black people in the UK.