Developing a person-centred healthcare system does not occur in individual patient encounters; patients need to be involved at all levels. However, there is limited knowledge about patient participation at the system level in a Swedish context. This study contributes by gathering the experiences of almost 500 patient representatives and regional and organizational representatives, such as politicians and government officials, who are involved in patient participation in healthcare governance. Our main data collection method has been a questionnaire sent to people identified as members of, for example patient councils. To our knowledge, this is the first survey of this magnitude in this field. We draw three forward-looking conclusions: 1. The regions need clear governance and systematic working methods for patient participation to create value. The majority of respondents believe that patient representatives offer valuable perspectives and should play a significant role in healthcare development. However, there are differing views on how patients should be involved. To maximize its potential, it is important to determine early on why the patient perspective is needed and the level of influence of the patient participants. 2. The patient organisations need to strive to continue to be relevant collaborative partners. Membership numbers in patient organisations are decreasing, particularly among younger people. The organisations, therefore, need to work actively with expanded recruitment and knowledge acquisition in order to represent broad patient groups. 3. Patient participation needs to be coordinated nationally to a greater degree than today. There is a growing tendency to emphasize the patient’s perspective, also at the system level. The regions have handled this in different ways, resulting in a fragmented system. A government strategy could enhance coordination across regions, providing more equal conditions for patient representatives. Additionally, we see a need for a national platform that includes best practices and supports recruitment.