Research Funded in 2024/25

Authors: Lloyd, Alex (alexander.lloyd@ucl.ac.uk, PI); Richards, Mya; Perowne, Rachel; Fearon, Pasco; Viding, Essi.

Summary: Collaborating with individuals with lived experience of mental health problems is important when conducting research on this topic. Known as Patient and Public Involvement (PPI), collaborating with ‘experts by experience’ can provide researchers with insight into how to develop research questions that matter to those who experience mental health problems, ensure that studies are designed appropriately for research participants, and support in appropriately communicating research findings to diverse audiences. However, a widely recognised limitation of PPI methods is that experts by experience who collaborate with researchers often do not reflect the diversity of individuals that experience mental health problems ([1,4]). This project will examine barriers to increasing diversity in PPI and identify opportunities to sustainably influence practice in PPI that will encourage diverse groups of experts by experience to collaborate in academic research.

To address this topic, we plan to recruit experts by experience, academics, and community organisations (e.g., charities) with experience of PPI methods to understand their views about barriers to diversity in PPI. We will use a method known as a ‘Delphi study’, which asks experts to submit their views over several rounds of questionnaires, with the aim of reaching a consensus across participants. In this project, we will ask experts about their views on barriers to ensuring diversity in PPI methods. Importantly, we will also ask participants to suggest potential actions institutions (e.g., universities) and individual researchers can take to promote diversity in future research using PPI. The Delphi study first involves asking participants their views using open ended (i.e., free text) responses about a subject. For example, we will ask participants to describe in their own words what they think are the barriers to recruiting more diverse experts by experience to collaborate on research. Responses to these questions are then used to develop subsequent questionnaires, in which participants rate the extent to which they agree with the views expressed in the first questionnaire. These questionnaires are repeated until a consensus across participants has been reached [10]. These findings will provide a clear definition of barriers to ensuring diversity in PPI and tangible actions that can be implemented to reduce underrepresentation in PPI.

Authors: Gutman, Leslie (l.gutman@ucl.ac.uk, PI); Feese, Avili.

Summary: The degree awarding gap in higher education is the difference in the proportion of two student groups receiving a first (i.e. Distinction) or second-class (i.e. Merit) degree. This gap

is called an ‘awarding gap’ instead of an ‘attainment gap’ to highlight that such differences are not the fault of individual students but reflect more systemic issues including racism and discrimination.

Across UK universities, there are long-standing awarding gaps for some groups of students including those who are ethnic minorities, those with disabilities, mature students and those from socio-economically deprived backgrounds. These gaps persist after factors like prior attainment or household income are considered. For example, at University College London (UCL) in 2022-23, there was an awarding gap of 4.6 percentage points for a first degree between UK Black, Asian and Minority Ethnic and White undergraduate students. Awarding gaps are likely present for postgraduate students too, but UCL has not provided the data to examine the awarding gap and understand how the size of the gap differs across programmes. This has prevented us from being able to design and deliver targeted strategies to reduce the awarding gap for postgraduate students.

Fortunately, the Faculty of Brain Sciences (FBS) Equality, Diversity and Inclusion (EDI) team has obtained FBS postgraduate data for the last five years. These data include the student’s final award mark, gender, ethnicity, country of domicile, programme and year of study. So, we can now examine the awarding gap in detail and understand who experiences an awarding gap, the size of the gap, and whether the gap varies across programmes and different years (such as during the pandemic). We can also analyse how intersecting identities may impact these awarding gaps.

In addition, we want to hear the stories of postgraduate taught students. We want to understand their lived experiences at UCL and what factors they think might influence the awarding gap. So, we plan to interview 20 postgraduate taught students. We will conduct these interviews after we examine the data so we can talk to students whom the data show as being more likely to experience an awarding gap. Listening to students and being able to highlight their voices will add an important depth to our project. It will allow us to understand the barriers they face and how we might better support them to succeed in their postgraduate studies. We will be able to express ideas in students’ own words, but we will be careful that no interviewee will be able to be identified. We will also provide the interviewees a voucher as a token of our appreciation.

We will also have a co-production team, who will provide feedback on all stages of the study and can be involved in collecting and analysing the data. We have two FBS postgraduate alumni who are enthusiastic about being on the co-production team. They are from different backgrounds and have lived experience to inform our project. They have read this application and provided feedback. Both are planning to apply for a PhD so this work will be useful for their own development as early career researchers. We will also recruit two current FBS postgraduate students from diverse backgrounds to be part of the co-production team. The project lead, Professor Leslie Gutman, has experience leading co-production teams. She will make certain that everyone on the co-production team feels included, is listened to and their input is valued. Everyone who is part of our co-production team will be paid for their time.

This study is important to us because we steer and oversee the FBS EDI team. Leslie Gutman is the Vice Dean EDI and Avili Feese is the EDI Manager. Our roles involve providing strategic leadership and direction for EDI work across the faculty and ensuring support and organisation in achieving our EDI goals. One of our priorities is to identify, with a view to reduce, inequalities in the degree awards for all students. The findings of this project will help to inform our EDI plans and goals in the coming years. Understanding the awarding gap for postgraduate students will help us to reduce inequalities using tailored strategies to support those groups who are more likely to experience an awarding gap.

Authors: Zeina, Mohamad (m.zeina@ucl.ac.uk, PI); Nelson, Amy; Parashkev, Nachev.

Summary: Research must be representative of the population it serves, and maximally leverage diverse viewpoints, backgrounds and skillsets to make the most difference to people’s lives. All too often, some researchers’ voices are less rewarded by traditional markers of success – we know for example that women are more likely to focus on societal benefit, attracting more readers but fewer citations, and that minority ethnic groups receive less citations – a key metric used to guide promotions and grants (Heidt, 2023; Zhang et al., 2021). We also know from my 2020 study on BMJ letters to the editor, that both gender and ethnic disparities significantly affected the odds of publication, even when controlling for various content-based features such as reading ease, word count, and the presence of references (Zeina et al., 2020). But there are few existing studies on whether protected characteristics affect the ‘next-steps’ of research – “did that paper help patients by influencing policy, guidelines or patents?”.

This project will investigate the existence of an “Impact Gap” in neuroscience research, focusing on whether authors with different protected characteristics (e.g., authors with different perceived gender or race) result in different levels of real-world impact, even when producing papers with similar content. This is an ambitious goal, as critics may ask if we can truly compare academics who work on very different research problems. We propose a highly technical solution to this issue, using advances in AI to group papers with similar research content, allowing us to control for the wide variety of academic work and look only at the effect of protected characteristics. We will use Large Language Models (LLMs), that have been trained to process language on trillions of data points, enabling a far more nuanced understanding of text. These models can now capture subtle patterns in language and context that were opaque to previous analysis, allowing us to analyse content in much greater depth and across vast datasets. For example, whereas previous techniques would have counted two abstracts similar if they had similar word lengths, LLM based techniques allow us to group together abstracts based on writing style, clarity of expression, and fine grained topics.

Our lab has already published work that uses language models to predict the downstream impact of papers, years ahead of time. We propose to use these predictions, that are by design blind to author characteristics, to look for differences between predicted impact and real impact in published research in neuroscience.

Our findings will be valuable not only for individual researchers, but also for academic institutions, funding bodies, policymakers, and other stakeholders committed to promoting fairness and inclusivity in scientific research. This study will add to the growing body of literature exploring the role of systemic biases in academic publishing and provide actionable recommendations for addressing these inequities. Our ultimate goal is to uncover disparities, inform strategies for fairer impact assessment, and foster a more inclusive scientific community.

While focused and practical in scope, this project has the potential to deliver highly significant results for both neuroscience and the broader academic landscape. Through this research, we aim to contribute to a better understanding of how bias affects academic careers and to develop concrete strategies to mitigate these effects.

Authors: Scior, Katrina (k.scior@ucl.ac.uk); Maclure, Matthew; Robinson, Louisa.

Summary: Over 200,000 people in the UK are living with a stoma and there is strong evidence outlining the negative psychological impact following stoma surgery with difficulties including anxiety, depression, poor body image, sexual problems and adjustment problems. Stigma and feelings of self-disgust have been shown to affect stoma acceptance and how confident people feel about stoma care and about engaging with social and leisure activities. Furthermore, research has shown that people who are members of stigmatised groups who self-stigmatise experience a ‘why try’ effect, with ensuing beliefs such as ‘I’m not worthy’ and ‘I’m not able’.

Research has suggested that psychosocial and exercise-based interventions can improve mental health outcomes, specifically around acceptance, confidence and supporting a mindset shift for individuals with stomas. This led us to the #12HourWalk, an outdoor walking initiative started by the explorer Colin O’Brady in 2022, the key aim of which is to shift individuals from an ‘‘I can’t’’ to an ‘’I can’’ mindset. A #12HourWalk offers an opportunity to step outside of everyday life by spending 12 hours outdoors, alone, unplugged and free of usual distractions. It has been credited with offering a mindful walking retreat and encouraging a ‘can do’ mindset. This simple intervention was chosen because of its central goal of shifting mindsets, challenging self-limiting beliefs and low self-efficacy. Furthermore, it tackles a frequent reluctance among ostomates to engage with exercise, despite exercise being seen as very beneficial for ostomates.

We have partnered with Colostomy UK, a nationwide charity to deliver this intervention to those with stomas across the country. The partnership will be beneficial across numerous areas. The research team will receive stoma awareness training from Colostomy UK; the charity will support recruitment of experts by experience and relevant professionals to sit on a steering committee to advise on areas such as accessibility, inclusivity and risk management; the charity will support project engagement and recruitment with the aim for participants to be recruited from a range of socio-economic and geographical backgrounds to ensure appropriate and representative diversity; and to produce a plan of how findings can be shared and disseminated outside of academia to deliver practical change in people’s lives

Authors: Batla, Amit (a.batla@ucl.ac.uk), PI; Gandhi, Sonia; Collins, Hannah; Manoharan, Angelina.

Summary: It is well known that ethnic minority groups are underrepresented in many areas of research in UK, including movement disorders such as Parkinson’s disease, atypical parkinsonism, dystonia, and other rare movement disorders. In particular, ethnic minorities are underrepresented in Parkinson’s research1 and have lower quality of life than white

patients2’3. Parkinson’s can have a wide spectrum of symptoms that may manifest differently across ethnicities. Lack of ethnic representation in Parkinson’s research raises concerns about the applicability of the results to ethnic minorities and the wider population4. If specific ethnic groups are excluded, researchers are unable to determine whether potential treatments (e.g. new drugs) differ in outcomes based on ethnicity. MDC has been actively recruiting patients for clinical research for over 5 years and have hosted over 20 PPIE activities. Despite our awareness of the importance of ethnic inclusion, we have only included under 5% of patients in our research less than 10% of active participants in our PPIE activities. We have observed some previously reported barriers, like language, literacy levels, and mistrust in the medical community due to historical mistreatment5 but we anticipate that there may be other barriers that could be reversible, and identification and addressing these may positively contribute to improving research inclusion.

We aim to identify the barriers that ethnic minority patients with movement disorders face when deciding to participate in research at UCL. First, our team will hold two PPIE focus groups with patients and carers to identify barriers to participation in research. We will then invite a few patients to join us to analyse the data and examine any sources of mistrust or gaps in communication about research. Thirdly, we will hold a focus group with neurology consultants and researchers to present the results and analysis and work with participants to identify modifiable factors and create solutions to overcome the identified barriers. Based on the proposed solutions we will review and revise the MDC strategy for research recruitment and communications.

For the first part, we will organise two half-day focus groups and include 20 patients from the ethnic minorities and their partners or carers. Prior to the focus group, participants will be provided with an information sheet of an MDC clinical trial testing new drug treatments for Parkinson’s disease, called Accelerating Clinical Trials in Parkinson’s Disease (ACT-PD). To mimic a real scenario where MDC patients may be initially invited to participate in a research study, the information sheet will detail the objectives of ACT-PD and the requirements of participants (e.g. taking the study medication, providing blood samples, genetic testing, study visits). Participants will be asked to answer a questionnaire rating their likeliness to participate in ACT-PD, their general feelings towards research, and any barriers that may prevent them from participating. Participants will also provide demographic information (e.g. age, sex, medical diagnosis, ethnicity).

During PPIE focus groups, we will facilitate a discussion based on the barriers to research participation that participants identified in the questionnaire. We will discuss participants’ feelings toward participating in ACT-PD and learn more about participants’ reasons for or against participating. We will then provide more detail about the ACT-PD trial and answer any questions participants have. We will listen to participant’s thoughts about changes or adjustments that researchers can implement that may decrease or remove barriers to research participation.

We will work with participants to analyse the discussion of the focus group to identify key themes. At the end of the focus group, participants will be asked to complete the questionnaire about likeliness to participate in the study and barriers to participation again. Questionnaire responses before and after the focus group will be analysed to identify any changes in willingness to participate in the ACT-PD clinical trial after discussing it with

researchers, and if their general opinions about research had changed after the focus group.

We will invite a small number of patients from the PPIE focus groups to join us in analysing the data from the focus groups, evaluate MDC communications, and strategize ways to overcome barriers and improve communications. A third focus group will be conducted with three consultant neurologists, researchers, a research nurse, and a patient representative. We will discuss issues they may have with recruiting ethnic minority participants to their studies, and how to feasibly implement the solutions identified by the participants and carers to help facilitate increased participation of ethnic minority groups in research.

Authors: Nevins, Andrew (a.nevins@ucl.ac.uk, PI); Di Prete, Davide.

This project examines how speech and language therapists (SLTs) are taught to understand and work with different speech sounds (phonetics), suprasegmental features (prosody) and the rules of sound in language (phonology) in the UK. We are focusing on 18 SLT programmes approved by the Royal College of Speech and Language Therapists (RCSLT). Our aim is to find out if these courses help future SLTs understand and work with accents, dialects, and languages spoken across the UK, especially in bilingual communities and not limiting their knowledge to standard varieties. 

Currently, the RCSLT guidance (2021) on SLT training includes general recommendations for teaching phonetics (e.g., the guidance outlines theoretical concepts and practical skills in phonetic analysis, covering articulatory description, perception, transcription, and production of sounds using the IPA chart). However, these recommendations are broad, allowing accredited programmes across the UK to shape their teaching in many ways, based on the programme's duration, available funding, and number of students. 

Whilst ‘multilingualism’ is present and highlighted as a separate subject in the RCSLT guidance, it is not linked to the teaching of phonetics or speech sounds, as well to any other linguistic components. Our aim is to bridge this gap by integrating multilingualism into the study of linguistics, ensuring that inclusion and diversity are embedded in the foundational training of SLTs.

Addressing the problem

We will start by reviewing what SLTs are currently being taught in their phonetics and phonology lessons, the main linguistic process studied in SLT. We want to know if students are learning about Englishes and/or other sounds of the world languages or if their knowledge and practice is limited to standard English. We will ask teachers and students from these courses about their experiences. Teachers will share how they teach phonetics, and students will explain how well prepared they feel to work with people from different linguistic backgrounds, now representing a majority of their caseload in some areas of the country. This will help us suggest adaptation to make the curriculum more inclusive and effective for the future generation of SLTs practicing in the UK and beyond. 

SLTs who speak more than one language often face unique challenges in the profession. Many feel pressure to speak perfect English (Gréaux et al., 2023) and other are not feeling confident of their training. However, we believe being multilingual should be seen as a strength in the profession. Multilingual SLTs can understand clients’ needs in a more personal and culturally sensitive way, and they have the linguistic competence to address assessing and planning for intervention in multilingual clients. Gréaux et al., 2023 show that multilingual SLTs are more aware of the cultural context of the people they work with, emphasising the need for on-going learning and self-reflection.

Beneficiaries

This research will help SLT students, educators, and future clients. By improving the way phonetics and phonology are taught, future SLTs will be better equipped to support people from all linguistic backgrounds. We aim to make sure that people who speak different languages or dialects are better understood and treated fairly when they access SLT services. Our project aligns with the RCSLT’s strategic vision for equality, diversity, and inclusion (EDI) 2022–2027. By focusing on language diversity in SLT training, we support RCSLT’s goals for a more inclusive profession. We also hope this research will help biling SLTs feel more valued and less pressured to meet unrealistic standards of perfect English. Finally, this work will help challenge the focus on ‘only one way of speaking English’ in SLT training. By embracing the rich diversity of languages and dialects in the UK, we hope to make SLT services more effective and fairer for everyone.

Outcome

We will draft a report for the RCSLT, highlighting best practices and including recommendations on how to improve SLT training to better reflect linguistic diversity. Additionally, we will share our findings in an article for the RCSLT Bulletin, encouraging more discussion within the SLT community. We also plan to apply for more funding to continue this research. In the future, we want to create a practical guideline for educators to help them teach phonetics and phonology in a more inclusive way, the booklet could be like this “NHS handbook speech sound awareness therapy pack” with guidelines for clients, carers/parents, and therapists. In addition, we would like to compare SLT education in the UK with other countries to identify the best ways of teaching about language diversity in SLT training. This will help ensure the long-term impact of our work.

Conclusion

This research will have a lasting impact on SLT education in the UK. By improving how phonetics and phonology are taught, we aim to make SLT services more inclusive and reflective of the linguistic diversity in the UK. Our findings will help future SLTs provide better care to clients from different linguistic and cultural backgrounds, contributing to a more diverse and inclusive healthcare profession