Patient and public involvement in liver disease management and research: insights into the development of a patient group

Abstract

Background: Patient and public involvement (PPI) is increasingly recognised as crucial for enhancing healthcare and research relevance. This case study aimed to describe the development of a PPI group within the context of liver disease management and research, highlighting opportunities and challenges encountered. Methods: Patients with liver disease were recruited from a gastroenterology department through an online survey. An initial group discussion meeting was held using a nominal group technique, focusing on establishing the group's purpose, identifying areas of interest for involvement and determining practical organisational aspects. Ongoing collaboration occurred through regular meetings and communication. Results: A total of 18 patients actively participated in the group. Their motivations included utilising lived experiences to support others, gain knowledge about liver disease and raise public awareness. The group contributed to developing patient information, nurse-led consultations and a patient application. Additionally, they identified a need for research on improving healthcare system pathways for liver disease patients. Conclusions: This case study demonstrates a sustainable model for PPI in liver disease. Opportunities included empowering patients as consultants, collaborators and potential patient-led researchers. Challenges included addressing diversity within the group and ensuring adequate resources for PPI activities. This study provides valuable insights for healthcare professionals and researchers seeking to implement PPI in their own settings.