Involving patients in quality indicator development – a systematic review

BACKGROUND: Quality indicators (QI) are used in many health care areas to measure, compare, and improve the quality of care. Ideas of quality differ between health care providers and patients, yet patients are not regularly involved in QI development nor does a methodological standard for patient involvement in QI development exist. In this study we systematically reviewed the medical journal articles and gray literature for published approaches for involving patients in QI development. METHODS: We searched medical literature databases (Medline, Excerpta Medica database, and Cumulative Index to Nursing and Allied Health Literature), screened websites, and contacted experts in the field of QI development for publications on approaches to patient involvement in QI development. RESULTS: Eleven relevant journal articles and four web-published documents were included. Four major approaches to patient involvement were extracted from the literature: (1) focus group interviews, (2) self-administered questionnaires, (3) individual interviews, and (4) participation in panels during systematic consensus processes. Patients’ views were collected by involving patients, patient representatives, or family members. CONCLUSION: Although there is a large body of literature on QI, publications that describe approaches to patient involvement in QI development are scarce. In principle, indirect and direct methods of patient involvement can be distinguished, and it seems most promising to combine different approaches. However, the limited number of publications identified clearly shows that further research in this field is overdue and that the quality of reporting found in studies within this field needs to be improved.