Meaningful Public Involvement: Changing research institutions towards epistemic justice

Tomasz Krawczyk¹Jan Piasecki¹Jacqueline Galica²Marcin Waligora^1*

• ¹Jagiellonian University Medical College, Kraków, Poland
• ²Queens University, School of Nursing, Kingston, Canada

Public and patient involvement and engagement (PPIE) in research is increasingly expected and often formally required by the sponsors. However, creating and sustaining conditions for meaningful PPIE can be challenging. It requires efforts of all involved parties. While much attention is given for the ethical inclusion of individuals as research participants, their collaboration with researchers and design of accessible research processes, there is a question of how research institutions can support PPIE. We argue for comprehensive changes within research institutions to facilitate meaningful PPIE practice. These changes should include institutional culture and attitudes towards the public members involved in research, to foster meaningful encounters between people with different forms of knowledge and life experience, such as professionally-trained researchers and members of marginalized social groups. In this paper, we propose a framework of institutional changes for PPIE, which focuses on their sociocultural and epistemic features. We explore the context of PPIE and possible risks related to disregarding public members as owners of valid knowledge. We use the order of change model as a frame and emphasize the role of third-order changes, which involve raising awareness about diverse forms of knowledge. Such changes would allow for sustaining PPIE research as knowledge space, wherein public members and researchers can respectfully share knowledge to inform scientific inquiries. Based on these conceptualizations, we outline practical examples and future directions. Better conceptualizing of institutional changes can contribute to facilitating their implementation and thereby more ethical research practice.