Connecting communities to advanced therapies: North East Mahan Gurmat Samagam
Researchers from the NIHR Newcastle Clinical Research Facility (CRF) are bringing advanced therapies research into local communities to increase public awareness. Advanced therapy investigational medicinal products (ATIMPs) are medicinal products that are either:
- a gene therapy – a technique that uses a gene to treat, prevent or cure a disease or medical disorder
- a somatic cell therapy – a technique that transfers the genetic material into cells not involved in reproduction so that they treat the individual but are not passed on to future generations
- a tissue engineered product – a medicine containing engineered cells or tissues, which is intended to regenerate, repair or replace human tissue.
Through the new connecting communities to advanced therapies project, the team is working with groups who are currently underrepresented in research and may be disproportionately affected by conditions that could be treated with ATIMPs.
To kick off the project, members of Newcastle CRF attended the North East Mahan Gurmat Samagam at Gurdwara Siri Guru Singh Sabha. The multi-day event brings together Sikh families and community members from across the North East for spiritual reflection, learning, and community activities.
Representing the CRF were Mukul Verma, trials manager for ATIMPs, and Judith McGuinness, patient and public involvement and engagement (PPIE) manager, who joined the event to speak with attendees about health research and the future of advanced therapies.
Starting the conversation about advanced therapies
ATIMPs are a rapidly evolving area of medicine with the potential to transform the treatment of a range of conditions. Despite their promise, public awareness and understanding remains relatively limited compared with more established areas of clinical research.
Advanced therapies can also raise important questions around ethics, trust, cultural values, and the use of donated human cells and tissues. Recognising this, the connecting communities project focuses on creating a welcoming space where community members can learn more about research and ask questions without fear of prejudice.
As part of the event, attendees were invited to complete a questionnaire exploring awareness of advanced therapies, perceptions of their potential use in healthcare, and confidence to take part in future research.
The insights gathered will help us better understand community needs and develop targeted patient and public involvement and engagement (PPIE) activities as well as accessible resources shaped around the perspectives of the people we aim to engage.
“Meaningful conversations like these are essential to building trust, improving awareness, and ensuring that future healthcare innovations are developed with communities, not just for them.”
– Mukul Verma, ATIMP trials manager, The Newcastle upon Tyne Hospitals NHS Foundation Trust.
Research that meets people where they are
The visit reflects Newcastle CRF’s commitment to making research more accessible and inclusive by engaging directly with communities across the region. By taking research into community spaces, the connecting communities project aims to increase awareness of ATIMPs and, equally importantly, ensure a wider range of voices help shape the future of healthcare research.
The CRF team will continue its connecting communities to advanced therapies project throughout the year, attending community events across the North East thanks to funding from the Midlands and Wales advanced therapy treatment centre (MW-ATTC) and Advanced Therapy Treatment Centre (ATTC).