An Equitable Approach to Improve Mental Health During the Autoimmune Disease Diagnosis Journey.

Lead Applicants: Rohini Mathur & Chloe Pasin

Lead Member: QMUL

Autoimmune diseases are conditions where the body wrongly attacks its own tissues. Some common autoimmune diseases include inflammatory bowel disease, lupus, and rheumatoid arthritis. Approximately 4 million people in the UK live with at least one autoimmune disease. Autoimmune diseases often take a long time to diagnose (around 6-8 years). A long, complicated diagnosis process can create mistrust in healthcare providers. It can worsen both physical and mental health. Women and people from Black or South Asian heritage groups often wait longer for autoimmune diseases diagnoses. More than half people with autoimmune disease face mental health issues, but there is still not enough formal mental health support during the long diagnosis process.

 At Queen Mary University of London, we are planning a new research project to improve the mental health and well-being of people with autoimmune diseases along their diagnosis journey. This project will use a co-production approach: people with lived experience will be equal partners with researchers to design and conduct the study. Our goal is to create recommendations for interventions and advocate for changing care guidelines.

 With this funding, we propose to hold two three-hour long co-production meetings. Each meeting will have five participants – women and individuals from racially minoritised backgrounds living with an autoimmune disease. These meetings will guide future funding applications. The first of these would be Dr Pasin’s postdoctoral fellowship application to NIHR. The meetings will shape the research questions and methods. They will ensure that the NIHR proposal is relevant, use appropriate language, and can lead to highly impactful research. We will discuss:

• the relevance of the proposed research questions and whether the project aligns with lived experiences
• the quality of the plain English summary
• the co-production and dissemination plans
• the project’s limitations, risks, and possible mitigation strategies

We will also encourage participants to consider joining the steering group of the project if funded.

 We will reach out to people with lived experience through charities (e.g., The Wren Project, the Autoimmune Support & Awareness Foundation, the National Rheumatoid Arthritis Society, Chron’s and colitis UK, Lupus UK), posting on the NIHR “people in research” website and the Wolfson Institute of Population Health PPI Opportunities Newsletter. We will encourage participation of women and people from Black and South Asian communities to ensure diverse experiences. We will hold one meeting online and one in person at an accessible location at Queen Mary University of London, if we can reach enough people in the London area. We will collect anonymous written feedback from the participants with a short questionnaire after the meeting. We anticipate participants to potentially share painful experiences during these sessions. We will consider the sensitivity of the topic when planning the meeting and prepare signposting for mental health support.

Amount: £1,940