Investigating the use of patient involvement and patient experience in quality improvement in Norway: rhetoric or reality?

BACKGROUND Patient involvement in health care decision making is part of a wider trend towards a more bottom-up approach to service planning and provision, and patient experience is increasingly conceptualized as a core dimension of health care quality.The aim of this multi-level study is two-fold: 1) to describe and analyze how governmental organizations expect acute hospitals to incorporate patient involvement and patient experiences into their quality improvement (QI) efforts and 2) to analyze how patient involvement and patient experiences are used by hospitals to try to improve the quality of care they provide. METHODS This multi-level case study combines analysis of national policy documents and regulations at the macro level with semi-structured interviews and non-participant observation of key meetings and shadowing of staff at the meso and micro levels in two purposively sampled Norwegian hospitals. Fieldwork at the meso and micro levels was undertaken over a 12-month period (2011-2012). RESULTS Governmental documents and regulations at the macro level demonstrated wide-ranging expectations for the integration of patient involvement and patient experiences in QI work in hospitals. The expectations span from systematic collection of patients' and family members' experiences for the purpose of improving service quality through establishing patient-oriented arenas for ongoing collaboration with staff to the support of individual involvement in decision making. However, the extent of involvement of patients and application of patient experiences in QI work was limited at both hospitals. Even though patient involvement was gaining prominence at the meso level - and to a lesser extent at the micro level - relevant tools for measuring and using patient experiences in QI work were lacking, and available measures of patient experience were not being used meaningfully or systematically. CONCLUSIONS The relative lack of expertise in Norwegian hospitals of adapting and implementing tools and methods for improving patient involvement and patient experiences at the meso and micro levels mark a need for health care policymakers and hospital leaders to learn from experiences of other industries and countries that have successfully integrated user experiences into QI work. Hospital managers need to design and implement wider strategies to help their staff members recognize and value the contribution that patient involvement and patient experiences can make to the improvement of healthcare quality.