The use of research evidence on patient preferences in health care decision-making: issues, controversies and moving forward

Abstract

Patient preferences are increasingly considered important in health care decision-making. The consideration of patient preferences is mostly put into practice by giving patients a seat at the decision-making table, instead of using research evidence on patient preferences. The consideration of research evidence on patient preferences is justified and relevant for several reasons. The current limited use of this type of evidence suggests, however, that barriers for its use exist. This paper provides an overview of the issues and controversies related to the use of research evidence on patient preferences. Furthermore, an agenda for research and practice is proposed. The paper focuses on two decision contexts, clinical practice guideline development and reimbursement decision-making.

Keywords::

• clinical practice guideline
• coverage
• economic evaluation
• evidence-based medicine
• health technology assessment
• patient preference
• reimbursement

Acknowledgements

This paper is an adapted version of the inaugural speech of Dirksen, presented on September 20, 2013 at the Maastricht University, The Netherlands. The author’s colleagues, Cecile Utens, Manuela Joore and Trudy van der Weijden, are acknowledged for their important contributions in the patient-VIP study (the Netherlands Organisation for Health Research and Development [ZonMw], grant application number 152002046). Their valuable suggestions and those of three anonymous reviewers regarding an earlier draft of this paper are much appreciated.

Financial & competing interests disclosure

The author has no relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript. This includes employment, consultancies, honoraria, stock ownership or options, expert testimony, grants or patents received or pending, or royalties.

No writing assistance was utilized in the production of this manuscript.

Key issues

• Patient preferences are currently mainly considered through active patient participation strategies in health care decision-making.

• The current use of research evidence on patient preferences in clinical practice guideline development and reimbursement decision-making is limited.

• The integration of research evidence on patient preferences in health care decision-making is morally justified, and relevant for several reasons.

• The health technology assessment community and guideline developers do not necessarily experience the same barriers for the use of research on patient preferences.

• Normative, conceptual, methodological and practical work is needed to increase the uptake of research on patient preferences in guideline development and reimbursement decision-making.