Patient participation: Is there a need to change direction? An explorative evaluation from the Netherlands

2014 Conference

Abstract: From 2009 until 2013 the program ‘Patient participation within research, quality and policy’ was funded by the Netherlands Organization for Health Research and Development (ZonMw). Near the end of this program, an inquiry of the current state of patient participation in the Netherlands was carried out. The main questions of this inquiry were: ‘What did we gain in the last decades, but also what did we lose? When is participation good or good enough? What loose ends exist and what can be learned from the many frictions that occur in the field?’

In our research on the frictions and ‘raffles’ of participation we asked people involved in patient participation in research, health policy and quality improvement to help us. We asked them about their experiences and any friction they had encountered. From this, two main issues arose:

1. Often there is ‘tamed’ participation. This means that participation is organised and defined by one stakeholder. This is problematic because it hampers the intrinsic value of participation.
2. The duties and responsibilities that come with the organization of participation is often ‘outsourced’ to patients. This means that participation is less successful, not structurally embedded in the organisation and that patients have to put in much more energy than other stakeholders.

In this paper we want to discuss these issues with the participants to see if these issues apply only in the Netherlands or can be recognised in other countries as well. We then want to examine and to make concrete what this means for patient participation in the future.