Patient Participation in Development of Quality Indicators using the Example of National Disease Management Guidelines for Chronic Heart Failure - A Qualitative Analysis of Collective Perspectives

Purpose: In this qualitative study it was investigated by group discussions with patients suffering from chronic heart failure, how relevant the existing quality indicators of the National Disease Management Guidelines for Chronic Heart Failure are being estimated. Methods: 6 group discussions were performed. The sample was formed from 4 mixed-gender groups, a male group and a female group. Participants were recruited from local heart sports groups. For the interpretation a method similar to the grounded theory was used. Results: The main conclusion is that in principle quality indicators are accepted. However, many of these indicators neglect the everyday aspects of patients' life. Participants show a disposition of yes - but regarding the quality indicators. This phenomenon could be theoretically grasped using the concept of order of knowledge. While participants keep referring to an order of everyday knowledge, quality indicators make recourse to a medical order of knowledge. Both orders of knowledge may compete with each other. Conclusions: The professional knowledge order of medicine needs to open up to a patients' knowledge order. Patient representatives in health care bodies need to be trained to develop a reflexive point of view to different knowledge orders enabling them to represent patients' every-day knowledge more confidently. Otherwise there is danger of conformation to the professional knowledge order of medicine only for reasons of being recognised as equal partners.