Abstract
The National Health Plan (2007-2010) establishes that users should participate in development of all parts of the health services. We have investigated whether and how patients participate in development of guidelines in Norway. Nine doctors and one nurse, trained in the AGREE instrument (an international tool for evaluation of clinical guidelines), evaluated patient involvement in development of key guidelines in Norway, on a scale from 1 (patient views not mentioned) to 4 (patients participate). 127 guidelines (published in the period 2000-2009) were assessed. The average score for extent of patient involvement was 1.8. Guidelines from public institutions scored higher than those developed by professional medical organizations; mean 2.4 (95 % CI 2.2-2.7) versus 1.5 (1.2-1.7). Guidelines on cancer, mental health, musculoskeletal disorders and pediatrics had the highest scores. There were no differences between older (2000-05) and more recent (2006-09) guidelines. Norwegian guidelines developers seldom involve patients in guideline development. Patient views are mainly not taken into account in literature searches or systematic collection of information.
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