Background To date researchers have given little attention to the use of quality of life (QOL) data for organization and systems-level change. This article presents two state-level examples of how QOL data are currently used in the USA.
Method Individuals with intellectual disability (ID) were assessed on an ongoing basis using two multidimensional QOL instruments. Data were analysed at the individual and organizational level.
Results Examples of statewide data utilization include: (1) determining significant predictors of quality outcomes; (2) developing provider profiles; (3) comparing individuals with ID with those without ID; (4) developing state-level performance standards; and (5) implementing continuous programme improvement.
Conclusions The availability of this type of data allows service delivery systems to: (1) significantly alter the relationship between individual consumers and service providers; (2) open the system to scrutiny by citizens with and without ID; (3) improve responsiveness and quality outcomes; and (4) shape future directions of the service delivery system for people with ID.