An empirical study of patient participation in guideline development: exploring the potential for articulating patient knowledge in evidence-based epistemic settings

Background Patient participation on both the individual and the collective level attracts broad attention from policy makers and researchers. Participation is expected to make decision making more democratic and increase the quality of decisions, but empirical evidence for this remains wanting. Objective To study why problems arise in participation practice and to think critically about the consequence for future participation practices. We contribute to this discussion by looking at patient participation in guideline development. Methods Dutch guidelines (n = 62) were analysed using an extended version of the AGREE instrument. In addition, semi-structured interviews were conducted with actors involved in guideline development (n = 25). Results The guidelines analysed generally scored low on the item of patient participation. The interviews provided us with important information on why this is the case. Although some respondents point out the added value of participation, many report on difficulties in the participation practice. Patient experiences sit uncomfortably with the EBM structure of guideline development. Moreover, patients who develop epistemic credibility needed to participate in evidence-based guideline development lose credibility as representatives for 'true' patients. Discussion and conclusions We conclude that other options may increase the quality of care for patients by paying attention to their (individual) experiences. It will mean that patients are not present at every decision-making table in health care, which may produce a more elegant version of democratic patienthood; a version that neither produces tokenistic practices of direct participation nor that denies patients the chance to contribute to matters where this may be truly meaningful.