How patient/public involvement impacts the research journey – an overview of the visual impairment research field

Abstract

Importance – Optimized communication between patients and public, specifically the visually impaired (VI) and VI researchers, is vital for effective patient/public involvement (PPI) in health research. Objectives - We reviewed evidence outlining effective bidirectional communication strategies in research that improve connectivity between researchers and the public, with specific reference to visual impairment perspectives. Evidence review - In health research, a disconnect exists between research outcomes and informing patients and public about research advances and novel pre-clinical research, an interaction that is fundamental for mutual benefit. This creates barriers between patients or service-users and the researcher, as researchers are perceived to have higher level technical knowledge but limited know-how of the real-world experience of service users that might impact on the translation of their research. Findings - Active PPI is endorsed by funding bodies/agencies to facilitate proactive and productive engagement between service users and researchers. Effective communication strategies/tools can help researchers facilitate this engagement. Conclusions and relevance - PPI inception into mainstream research is protracted but contemporary communication strategies can effectively overcome these issues. We strongly advocate that pre-doctoral students receive PPI training at early career stages, and that patients and public have access to similar training, while Principal Investigators (PIs) are key actors ensuring PPI becomes mainstream in health research.