Introduction Patient and Public Involvement (PPI) has become an important part of health research, yet the existence of many different frameworks and terms, combined with a lack of consensus, has led to uneven implementation. In Sweden, there are currently no national guidelines for PPI in health research and the lack of common guidance may lead to inconsistencies in practices and tokenistic PPI. Aim and methods This study aimed to create an overview of key themes in PPI-related documents created by actors that govern, finance and influence the process of health research in Sweden, with the goal of identifying similarities and differences, as this may support the development of national guidelines. A strategic sampling strategy was utilized, and 23 documents were included in the thematic analysis that was conducted. Results Five themes were identified: the entanglement of culture and structure within PPI, the importance of flexible systematic procedures, laying the foundation for collaboration, the appraisal of knowledge and education and ethical aspects of PPI. Differences included terminology for collaboration and PPI itself, varying emphasis on ethics depending on actors and differing guidelines for financial compensation. Discussion These findings may guide future research and contribute to initiatives for national guidelines. The themes demonstrate that despite differences, many shared values and procedures exist, which is promising for creating shared guidance for PPI. At the same time, identified differences highlight the need for flexibility so that guidelines can be adapted to diverse health research contexts. Conclusion Overall, the results suggest that effective guidelines for PPI in health research should be adaptable to different contexts, include unified yet accommodating terminology and structures, and foster a culture of trust and respect for different types of knowledge.