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Keywords:

  • collective health care;
  • decision making;
  • patient organizations;
  • patient participation

Abstract

Objective  To study whether the Dutch participation model is a good model of participation.

Background  Patient participation is on the agenda, both on the individual and the collective level. In this study, we focus on the latter by looking at the Dutch model in which patient organizations are involved in many formal decision-making processes. This model can be described as neo-corporatist.

Design  We did 52 interviews with actors in the healthcare field, 35 of which were interviews with representatives of patient organizations and 17 with actors that involved patient organizations in their decision making.

Results  Dutch patient organizations have many opportunities to participate in formal healthcare decision making and, as a result, have become institutionalized. Although there were several examples identified in which patient organizations were able to influence decision making, patient organizations remain in a dependent position, which they try to overcome through professionalization.

Discussion  Although this model of participation gives patient organizations many opportunities to participate, it also causes important tensions. Many organizations cannot cope with all the participation possibilities attributed to them. This participation abundance can therefore cause redistribution effects. Furthermore, their dependent position leads to the danger of being put to instrumental use. Moreover, professionalization causes tensions concerning empowerment possibilities and representativeness.

Conclusion  Although the Dutch model tries to make patient organizations an equal party in healthcare decision making, this goal is not reached in practice. It is therefore important to study more closely which subjects patients can and should contribute to, and in what way.