On 19 April 2024, the first-ever Multiple Long-Term Conditions (MLTC) Patient and Public Involvement, Engagement and Participation (PPIEP) Event was held at Leeds Teaching Hospitals.
The event highlighted the significant role of PPIEP in Research, emphasising the importance of comprehending MLTC from the perspective of affected individuals and exploring how medical records can be utilised to advance the knowledge of complex conditions. The event was attended by healthcare professionals, researchers, caregivers, and individuals living with multiple long-term conditions. A total of 35 PPIEP members participated in the event, all living with multiple long-term conditions or serving as caregivers.
Dr Kevin Franks, Medical Oncologist and Deputy Director of the Leeds Clinical Research Facility, and Professor Sue Pavitt, Professor in Translational and Applied Health Research and Director of the Dental Translational Clinical Research Unit, opened the event.
Their remarks were followed by insightful presentations from a distinguished panel of experts, including Dr Hanif Ismail, Research & Innovation / Leeds Clinical Research Facility PPIEP Manager, Julie Corrigan, Leeds Clinical Research Facility Inclusion Lead, Prof Alistair Hall, Consultant in Cardiology, Professor of Cardiovascular Epidemiology, Clinical Director Yorkshire & Humber, Dr Marlous Hall, Associate Professor of Epidemiology, University of Leeds, Dr Jonathan Batty, Clinical Research Fellow, University of Leeds, and Dr Sunil Daga, Consultant Nephrologist and Renal Transplant Physician.
One of the most impactful sessions of the day featured patients with MLTC, who bravely shared their journeys. Their candid insights into the challenges of managing MLTC in their daily lives was inspirational. These testimonials set the stage for dynamic interactive group discussions, which focused on strategies for raising awareness of MLTC, the potential establishment of an MLTC Action Group, and how such a group could help shape research priorities and develop a comprehensive MLTC research strategy.
Attendees were enthusiastic in their praise for the event, with feedback including:
“Thank you for the meeting and knowledge.”
“Probably more events similar to today.”
“Need to include ethnic minority group and groups from deprived
areas.”
“I thought the event was very good.”
“Hearing what brought people to research”
“Seeing the different disciplines and how to access each service.”
Acknowledgement:
This event was made possible through generous funding from the NIHR Leeds Clinical Research Facility (CRF) at Leeds Teaching Hospitals NHS Trust. The CRF is a dedicated space that facilitates cutting-edge early-stage and experimental clinical trials and research studies involving patients. We are deeply grateful for their invaluable support in enabling this important work.