Awarded the University of Manchester 2024 “Making a Difference” honor for significant contributions to the ROSHNI2 NIHR-funded trial, this research foregrounds the needs of ethnic minorities, fostering meaningful inclusion and representation in mental health research in the UK.
Establishment of PPIE Advisory Groups
Patient Public Involvement and Engagement (PPIE) advisory groups have been established to support research across diverse mental health areas, including parental depression, self-harm, psychosis, bipolar disorder, learning disabilities, and dementia. These groups provide essential insights for study design, recruitment and retention strategies, toolkit refinement, and dissemination. Engagement extends to British South Asian and British African Caribbean communities, with current partnerships with the Ethnic Health Forum to establish a new Eastern European PPIE group for trauma-focused research in Ukraine.
Media Engagement and Short Films
To reduce stigma surrounding mental health, numerous public talks at mental health awareness events and appearances on platforms such as BBC Radio 4, Lancashire Radio, and TV shows (Takbeer, Dunya) have been delivered. Additionally, the research group produces short films involving individuals with lived experience. One example, a film from the YCMAP trial titled Bhai (meaning “brother” in Urdu/Hindi), addresses self-harm among young South Asians.
Dunya news:
https://www.facebook.com/watch/?v=1045940480518717&rdid=xiBqmG5PHSkZmD5L
Short films:
“Count Me In” (CMI) Initiative
Leading the “Count Me In” (CMI) initiative at Mersey Care NHS Trust (initially supported by Professor Andrea Ciprianni and currently headed by Dr. Oladayo Bifarin), this initiative offers service users structured opportunities to engage in research, with automatic opt-in unless individuals choose otherwise.
Global Leadership in Community Engagement and Involvement (CEI)
In Pakistan and Nigeria, where CEI infrastructures are underdeveloped, PPIE advisory groups report directly to a Global CEI group. Through the Moving on ABC RIGHT project, individuals with lived experience participate as co-applicants and members of the global scientific advisory committee, contributing to study material development, broader community engagement, and identifying critical project facilitators and barriers, especially for culturally sensitive topics such as breast cancer.
Integrating PPIE/CEI Feedback in Research
Community-driven research guides this work, integrating service user and community priorities into research agendas. For instance, the ROSHNI2 trial adapted to address domestic violence concerns raised by British South Asian communities during COVID-19. Theory of Change (ToC) workshops facilitated the development of relevant research directions, with PPIE members actively involved in organizing and contributing to workshop outcomes and research planning.
Addressing Gaps in Treatment and Research for LMICs and Ethnic Minorities
The Global Research Group targets the substantial treatment and academic gap in low- and middle-income countries (LMICs) and among ethnic minorities in high-income contexts, addressing mental health needs across the lifespan. PPIE advisory groups actively collaborate in defining research questions, co-writing applications, co-designing recruitment and retention strategies, refining toolkits, and disseminating findings to stakeholders.
UK and Global Project Examples
In the ROSHNI2 trial, active social media engagement supported the project’s reach (e.g., Facebook, Instagram, Twitter). During the CMAP2 study, which focused on self-harm and suicide prevention, young advisory groups participated in project planning and outreach, supporting engagement events and contributing to therapeutic content development. This advisory group also assists with dissemination to educational institutions and organizes roadshows for outreach to over two million out-of-school children. In dementia research, collaboration with Alzheimer’s Pakistan fosters national-level engagement.
Building Capacity in Research and Community Engagement
Regular training in research methodologies, including qualitative methods and photo voice techniques, are offered for service users and carers, both in the UK and internationally, in collaboration with World Photovoice. PPIE training programs are accessible in multiple languages, with the ROSHNI2 Positive Health Programme available in five South Asian languages. These sessions equip service users and carers to contribute as consultants, research staff, academic writers, and editorial team members, enhancing their capacity to influence mental health research actively and effectively.
