Engaging and involving disabled people

This is the fourth episode of our series, Spotlight on community engagement and involvement (CEI): Leaving no one behind.

Host Mark Lutton, NIHR Assistant Director for Global Health Programmes is joined by Sweta Pal, Director of CEI for NAMASTE at Sangath, Dr Natasha Fothergill-Misbah, Research Associate at Newcastle University, and Dr Andrew Sentoogo Ssemata, Post-doctoral Scientist at MRC/UVRI & LSHTM Uganda Research Unit. Together, they discuss engaging disabled people in health care research. 

The guests share what is meant by leaving no one behind, challenges of engaging gender groups in their research, the impact of their research on communities and the impact on their research, and provide tips for leaving no one behind in CEI.  

Get to know our speakers

Sweta Pal is a public engagement professional. Her work has spanned youth mental health and early child development focusing on co-developing health promotion programmes which involve individuals with lived experience of a health concern into programme conception, design and implementation. Sweta employs participatory research methodologies to co-create health education programmes targeted at diverse audiences and communicate complex sociocultural subjects through accessible mediums and promote help-seeking. Through Sweta's work, she strives to create a world where all young people are able to thrive and enjoy good mental health without stigma and discrimination.

Andrew Sentoogo Ssemata is a post-doctoral socio-behavioural scientist under
the Disability Research Group (DRG) at the MRC/ UVRI & LSHTM Uganda
Research Unit, Entebbe. Andrew is also a member of the International
Centre for Evidence in Disability (ICED) and a Research fellow in the Department
of Global Health and Development at LSHTM.

Andrew has led on several community engagement initiatives for trials in Malaria,
HIV, menstrual health and disability. Currently, he is a co-researcher on the
NIHR professorship grant to Prof Hannah Kuper that is conducting a cluster randomized trial on improving access to healthcare for disabled people utilizing participatory learning and action for disability (PLA-D) groups in Uganda (2022-2026).

Dr Tash Fothergill-Misbah’s research has focused on Parkinson’s disease and ageing in Africa, stigma and access to healthcare. She is the CEI co-lead for the NIHR Global Health Research Group on Transforming Parkinson’s Care in Africa (TraPCAf), working across 7 countries. Tash has coordinated the grant’s CEI work alongside ‘Parkinson’s Africa’, the grant’s CEI partner. These activities have involved:

•  proposal development workshops 
• advocacy and awareness raising through community engagement and documentary films
• Parkinson’s training workshops
• the establishment of support groups for Parkinson’s
• patient advisory workshops to inform the research process

Mark Lutton is Assistant Director of Global Health programmes at the NIHR Academy. He is responsible for the delivery of NIHR’s Global Health capacity strengthening programmes and personal awards. Prior to joining NIHR, Mark was CEO of an FCDO funded research consortium aiming to strengthen health system resilience in fragile and shock prone settings. He has a background in capacity strengthening, programme management and Monitoring, Evaluation and Learning. Mark holds a BSc in Zoology (University of Edinburgh) and an MSc in Public Health (LSHTM). 

Please note this episode was recorded in late 2024. The views and opinions expressed in this podcast are those of the host and guests and do not necessarily reflect those of the NIHR or the Department of Health and Social Care.