Abstract Background: Patients are demanding a bigger role in the management of their own health and health care. Methods: The Dutch Federation of Patient and Consumer Organizations (NPCF) has initiated several projects in this area. One project started in 2001 and aims at contributing to the development of a nation-wide EPR system. Results: the NPCF participates in the National Institute for the Care Sector (NICTIZ). The NPCF plays an important role in defining the requirements regarding authorization and security of the EPR as well as for the legal framework in which optimal use can be made of the EPR. NPCF strongly promotes an active role of NICTIZ in developing a master plan for the EPR and an active role in its implementation. Conclusion: Patients and their organizations have to play an active role in designing and implementation of an ICT infrastructure for health care and in particular of the EPR.