Patients, researchers, clinicians and policymakers came together on 8 June 2026 in Liverpool for the HDR UK High Cost and Biosimilar Biologics Medicines Frontiers Meeting, a national event focused on how health data can improve the use of high-cost medicines and ultimately deliver better care for patients.
The day opened with a patient and public involvement panel, co-chaired by Ali Timmons from the Big Data for Complex Disease Driver Programme and PIONEER’s Public Involvement Officer Faduma Zahra-Gure. Patient representatives Hilary, Sue Trant and Ellen Forty from Asthma + Lung UK shared valuable perspectives on what matters most to people living with long-term health conditions.
The discussion highlighted that biologic medicines are only one part of a patient’s wider care journey. Panellists stressed that fragmented data remains one of the biggest barriers to research, limiting opportunities to improve treatment and outcomes. They also drew attention to the often-overlooked costs patients face, including caring responsibilities, travel and time away from work.
A strong theme throughout the session was the importance of honouring patients whose data makes research possible by ensuring findings lead to meaningful, patient-centred improvements in care. The meeting generated a number of valuable insights and future outputs, which will be shared in the coming months.
