PhD Defence Shannon van Hoorn

Value-based healthcare in inherited bleeding disorders

Value-based healthcare (VBHC) was first introduced in 2006 as a strategy to combat the rising healthcare cost and unwanted variation in outcomes and quality of care. According to VBHC framework, healthcare organizations should aim to maximize patient value, where value is defined as the health outcomes that matter to patients relative to the cost of achieving those outcomes. From 2011 onwards, hospitals in the Netherlands have been implementing VBHC principles to improve the care for patients with various medical conditions. The Dutch interpretation of VBHC, however, deviates slightly from the original concept. While the objective of maximizing patient value through the routine collection of outcomes that matter to patients prevails, Dutch healthcare organizations often bypass the immediate need to measure cost. In addition, in the Dutch context, emphasis is placed on the use of outcome information to improve shared decision making and to create a culture of continuous learning and quality improvement.

This PhD thesis aimed to assess the added value of the implementation of VBHC, as defined within the Dutch healthcare context, in routine clinical care for patients with an inherited bleeding disorder. To achieve this aim, this thesis includes research on all the steps necessary to facilitate the implementation and evaluation of VBHC in this patient population. This thesis provides a recommendation on which patient-reported outcomes should be measured in the care for patients with inherited bleeding disorders, and which patient-reported outcomes should be used to collect these outcomes. In addition, this thesis provides insight into the possible variation in the care provision for patients with hemophilia which can be used as both a starting point for continuous learning and quality improvement initiatives, as well as guide the collection and use of outcome information. Moreover, this thesis provides insight into patient experiences with the collection of outcome information in routine care provision.