Values and value in patient and public involvement: moving beyond methods

Abstract

Patient and public involvement (PPI) in research has evolved over recent years, yet it often remains an 'optional extra' and, in some cases, tokenistic. Discussions are often focused on processes and methods, and are yet to make PPI the norm; we argue that the conversation needs to change to one of 'value': a culture of common values and principles across all types of research. Taking a reflexive, personalised approach, we reflect on how our team's experiences as patients, healthcare professionals and academics have changed over time and shaped what we value, our involvement in research and the way we involve people in research. We illustrate, through our work together, the productive tensions we experience, our efforts to resolve these through analytic conversations and our ethic of responsibility to each other. Moving forward, embracing reflexivity and supporting relationships can help PPI to become integral to research; a value as opposed to a method.