Facts and figures about patient associations in the Netherlands between 2007 and 2009: review of their activities and aims.

Introduction: To facilitate empowerment, the government encourages patient associations to participate in policy making discussions. To play a crucial role as one of the partners for the government in formulating policy on healthcare, information was needed about the activities and aims of Dutch patient associations. This article describes the development of the monitor in 2005 and 2006 and the most important outcomes and trends for 2007, 2008 and 2009.

Methods: Seven years ago, a yearly monitor of patient associations was started to quantify the activities of the patient and consumer movement in the Netherlands. We analyze individual Dutch patient associations focusing on empowerment and advocacy for their own members.

Results: Different types of associations pursue different goals to provide a 'voice' for their members. There was a very slight decline in individual members when comparing 2007 and 2009. More than a third of all associations have professional, paid employees. Organizations for disabled or mental disorders have the most volunteers. Peer support meetings for their own members remain the most popular activities. There are many small organizations and a few big ones. Advocacy remains important although the motives differ between patient associations.

Conclusion: Dutch patient organizations reported activities they are expected to perform. They try to reduce information asymmetry by informing patients better through several media. They also provide peer support groups to their members. They reach the general public through their social media activities. Their primary focus is providing services to their members.