Enhancing Eating Disorder research networks: The Eating Disorders and Autism Collaborative (EDAC)
Lead Research Organisation:
University of Edinburgh
Department Name: Sch of Health in Social Science
Abstract
Eating disorders (EDs) are serious mental health problems associated with poor quality of life and a wide range of psychological, social and medical complications. Rates of EDs are on the rise, with increasing numbers of people seeking treatment. Compared to other mental health conditions there is very little research into EDs, limiting our understanding of these conditions and our ability to develop new, effective treatments. Importantly, EDs commonly occur alongside other conditions and neurotypes (e.g., obesity and autism) and yet the majority of research on EDs is carried out without drawing on expertise and innovations from these other topic areas. There is a pressing need for new ED research, with wider and more diverse collaborations to make progress in this field.
This proposal aims to increase ED research capacity by:
1) Facilitating collaborations across diverse academic disciplines with a specific target on researching EDs in autistic individuals.
2) Supporting the development of interdisciplinary research networks bridging academia, autistic peer researchers, the third sector, policy, clinicians and individuals with lived experience of ED.
3) Developing a series of networking, priority setting and research events that are firmly embedded in lived experience.
4) Increasing research capacity and career development via both early career researchers and peer researchers, supporting the next generation of ED researchers.
5) Developing a unique Scottish research collaboration that provides a key opportunity to develop and diversify ED research expertise across the UK.
At the heart of this project will be a new interdisciplinary network hosted in Scotland that aims to use different methods and approaches to carry out collaborative research led by autistic people with lived experience of EDs. More specifically, we will develop four streams of work:
1) Coming Together: We will host collaborative events which bring together researchers, clinicians and autistic individuals with lived experience of EDs to exploring the ethical challenges and best practice approaches of research in this area.
2) Setting the Agenda: We will use an arts-based methodology called photovoice to allow autistic individuals with EDs to share their experiences and set the priorities for research in this area. This will involve an exhibition showcasing the images created by these participants.
3) Testing the Approach: Researchers will come together to try out new approaches and collaborations based on the priority areas identified in the second work stream. We will carry out a series of interdisciplinary networking events to explore and share these learning from these trial studies.
4) Research into Practice: We will host a think tank event for policy makers and those working in clinical practice. This will focus on how we can make sure this research impacts the lives of autistic people with EDs, including how we best to develop clinical services for this population in Scotland.
This proposal aims to increase ED research capacity by:
1) Facilitating collaborations across diverse academic disciplines with a specific target on researching EDs in autistic individuals.
2) Supporting the development of interdisciplinary research networks bridging academia, autistic peer researchers, the third sector, policy, clinicians and individuals with lived experience of ED.
3) Developing a series of networking, priority setting and research events that are firmly embedded in lived experience.
4) Increasing research capacity and career development via both early career researchers and peer researchers, supporting the next generation of ED researchers.
5) Developing a unique Scottish research collaboration that provides a key opportunity to develop and diversify ED research expertise across the UK.
At the heart of this project will be a new interdisciplinary network hosted in Scotland that aims to use different methods and approaches to carry out collaborative research led by autistic people with lived experience of EDs. More specifically, we will develop four streams of work:
1) Coming Together: We will host collaborative events which bring together researchers, clinicians and autistic individuals with lived experience of EDs to exploring the ethical challenges and best practice approaches of research in this area.
2) Setting the Agenda: We will use an arts-based methodology called photovoice to allow autistic individuals with EDs to share their experiences and set the priorities for research in this area. This will involve an exhibition showcasing the images created by these participants.
3) Testing the Approach: Researchers will come together to try out new approaches and collaborations based on the priority areas identified in the second work stream. We will carry out a series of interdisciplinary networking events to explore and share these learning from these trial studies.
4) Research into Practice: We will host a think tank event for policy makers and those working in clinical practice. This will focus on how we can make sure this research impacts the lives of autistic people with EDs, including how we best to develop clinical services for this population in Scotland.
Technical Summary
There is a lack of visibility of eating disorder (ED) research in comparison to other mental health conditions (Solmi, et al. 2021). This project will create an interdisciplinary network hosted in Scotland that aims to use multi-methodological approaches to carry out collaborative and Person with Lived Experience (PWLE)-led research in ED and autism via four cross-disciplinary work streams: 1) Coming Together: ethics and collaborative working event. PWLE will join academics and clinicians to outline best collaborative practices, ethical issues that cut across the proposed work streams, and ideas for collaborative community engagement and dissemination. 2) Setting the Agenda: Using photovoice, an arts based methodology, to carry out priority setting amongst autistic individuals with eating disorders. We will use photovoice and arts based methodologies to carry out priority setting around clinical risk and assessment with autistic PWLE. This will be the basis of a photovoice exhibition to act as a platform to bring together individuals in both the autism and ED fields to support collaborations and to build further networks that will be further exploited in the next event. 3) Testing the Approach: A series of interdisciplinary networking events showcasing proof of concept work. This will be a series of 3 events extending existing networks and tackling the priorities identified via WS2. Events will showcase innovative, interdisciplinary, proof-of-concept work with the aim of pump-priming collaborative working in the key area of autism and EDs. 4) Knowledge Mobilisation: A policy and clinical think tank on integration of research into policy and clinical practice and building pathways for autistic individuals with EDs in clinical services. We identify barriers and facilitators to incorporating research into policy and clinical practice including implementation of the Pathway for Eating Disorders and Autism (PEACE) in Scottish Eating Disorders Services.
