Exploring Key Themes of Patient and Public Involvement (PPI) in Swedish Health Research Documents

Abstract

Introduction: Patient and Public Involvement (PPI) has become an important part of health research, but the existence of many different frameworks and guidelines for the process and the lack of consensus has led to fragmented procedures and terminology. There are currently no national guidelines for PPI in Sweden, and an overview of current PPI related documents could aid in the development of a common framework. Aim: The aim of this study was to explore the key themes in PPI related documents created by Swedish health research actors as well as explore any similarities and differences between them. Methods: A thematic analysis of PPI related documents created by Swedish health research actors was conducted. Results: The result of this study includes five themes constructed from the data: the entanglement of culture and structure within PPI, the importance of flexible systematic procedures, laying the foundation for collaboration in PPI, the appraisal of knowledge and education and ethical aspects of PPI. The similarities found are illustrated by the themes as they were constructed based on similarities and patterns found between the documents. The main differences found include terminology used for collaboration and PPI itself, differences in emphasis put on ethical considerations depending on actors involved and different guidelines for financial compensation. Conclusions: The key themes highlight the many similarities that exist between the documents, and considering these along with the differences can aid in constructing a common framework for PPI in Swedish health research.