@phdthesis{01J1B61FW8A6Y3BYW0KKMKGAR3,
  abstract     = {{In this thesis I address specific challenges regarding the operationalization of person-centred care (PCC). Person-centred care is health care in which every individual is treated as a person. It is widely accepted that health care should be person-centred in this sense. Different means to make health care more person-centred are currently being explored. I focus on two technologies that are meant to personalize health care: Clinical Decision Support Systems (CDSSs) and Patient Decision Aids (PDAs). CDSSs are meant to support health care providers to deliver health care tailored to their patients’ needs. They can do so by offering treatment recommendations, highlighting drug interactions, etc. PDAs, by contrast, are meant to support patients in making decisions about their care by presenting information, stimulating them to reflect on what is most important to them, etc.
The central research question is how to assess the impact of these technologies on person-centred care. For as these technologies influence which decisions patients make and ultimately which care they receive, the question needs to be raised whether their influence renders health care more or less person-centred. Given person-centred care’s strong commitment to the ethical principle of respect for patient autonomy, the focus of this thesis lies on how to assess the impact of CDSSs and PDAs on patient autonomy. I thereby make use of different theories of autonomy such as Pugh’s theory of rational autonomy, Beauchamp and Childress’ theory of patient autonomy and McLeod’s views on the relationship between self-trust and patient autonomy.
The thesis consists of three parts. In Part I the relationship between CDSSs and patient autonomy is investigated. The importance of differentiating between different aspects of patient autonomy is highlighted as CDSSs might affect these various aspects of patient autonomy differently. In order to answer the question how we can empirically assess the impact of the use of particular CDSSs on patient autonomy, I draw an analogy with how the impact of PDAs on patient autonomy is assessed empirically. To that end, I investigate in part II how several measures of decision quality used in effectiveness research on PDAs relate to patient autonomy. Both the relevance of what these measures of decision quality trace as well as how they trace it seems to be in tension with patient autonomy. In Part III I first explore the possibility to build mid-level theories in order to reduce these tensions. Thereafter I bind together different strands of the thesis in relation to Alexandrova’s Implicit Logic of validation.
Two general conclusions can be drawn. First, the normative disputes surrounding person-centred care permeate technical matters regarding the development, validation and use of measures of decision quality. Second, research regarding the normative aspects of measuring decision quality straddles the disciplinary boundaries between ethics and philosophy of science. Besides highlighting a topic that deserves more attention than it gets, then, this thesis highlights the need for collaborations between ethicists and philosophers of science to tackle tricky questions regarding the normative aspects of measuring decision quality in times of person-centred care.}},
  author       = {{Debrabander, Jasper}},
  language     = {{eng}},
  pages        = {{XIV, 118}},
  publisher    = {{Ghent University. Faculty of Arts and Philosophy}},
  school       = {{Ghent University}},
  title        = {{Rationalizing patients : clinical decision support systems, patient decision aids and patient autonomy}},
  year         = {{2024}},
}