The professional perspective on patient involvement in the development of quality indicators: a qualitative analysis using the example of chronic heart failure in the German health care setting

PURPOSE: There is an international consensus that quality indicators (QIs) of health care ought to represent patient-relevant aspects. Therefore, patient involvement in the development process is essential. However, there is no methodological gold standard for involving patients in QI development. The aim of this study is to explore experts’ views on the representation of patient-relevant aspects in the QI development process using the QIs developed in the context of the German National Disease Management Guideline for Heart Failure as an example. METHODS: Semi-structured, open telephone interviews were conducted with 15 German experts (patient representatives, physicians, researchers, and methodologists involved in guideline development or quality assessment). Interview themes were the relevance of the exemplary set of QIs for patients, as well as the legitimacy of, competence of, and collaboration with the patient representative who participated in the development process. Interviews were fully transcribed and content analyzed. Deductive categories derived from the research questions were supplemented by inductively formed categories during the review of the interview material. RESULTS: The qualitative analysis suggests a discrepancy between the guidelines’ QIs and those relevant to patients from an expert’s point of view, such as physician-patient communication and quality of counseling. Experts reported only minor communication and cooperation problems while working together in the guideline/QI development team. Concerns existed, for example, regarding the recruitment of patient representatives for diseases without self-help organizations, the financing of patient representation, and the training of patient representatives. Only few potential strategies for improving the process of patient involvement were mentioned. CONCLUSION: Integrating the patients’ perspectives through the recruitment of a patient representative to participate in the development team was well established and broadly accepted. However, experts stated that the finally selected QIs represent only a small part of the patient-relevant aspects of medical care. According to the experts’ perceptions, the current processes provide a very limited scope for integrating the patients’ perspectives in a more extensive way. Supplementing the set of “conventional” QIs with additional, separately developed, “patient-side” QIs might help to include patient priorities in quality measurement.