Patient and Public Involvement

Since 2013 the INHA has held the role of “Patient and Public Involvement” (PPI) in many research studies in Ireland and internationally.

Patient and public involvement (PPI) in research is where research is being carried out ‘with’ or ‘by’ members of the public not just ‘to’, ‘about’ or ‘for’ them. The slogan ‘nothing about us without us’, which is believed to be over five centuries old encapsulates this argument.

Involving the public in research in this way is important for both moral and pragmatic reasons. Morally, PPI is advocated on the grounds that people affected by a condition, or the wider public in the case of public health research, have a right to have a say in decisions about research that may affect them. This includes how research is designed and undertaken and how research findings are disseminated and implemented once a study is complete.

PPI in research envisages a relationship built throughout the lifespan of a research project between academics, clinicians and PPI colleagues in order to inform, plan, execute and, in due course, disseminate and translate research. There is a growing consensus that effective public and patient involvement (PPI) in research is instrumental in improving the quality of research projects, strengthening their relevance and impact and is beneficial to patients, the public and the health service.

Traditional views of PPI in research have placed patients in a consulting role, where major decisions are made by academics and clinicians, rather than in a meaningful and engaged dialogue, collaborating from the outset and ensuring that the patient voice is heard throughout the research lifecycle.

PPI ensures a focus on topics that concern health service users the most, and conversations between PPI and researchers promote learning for both parties. PPI has also helped create participant documentation and adapt academic language into plain English, thereby widening accessibility. Presentation of findings by PPI groups can also encourage further implementation of research findings and more effective dissemination. These positive developments have contributed to a significant drive to embed PPI within health and social care research, and it is becoming a prerequisite in funding applications.

Researchers who have embedded PPI in their studies report gaining a greater understanding of patients’ experiences and an appreciation of the problems they face, hence reinforcing motivation to continue their research.