title: The Missing Stakeholder Group: Why Patients Should be Involved in Health Economic Modelling.
abstract: Evaluations of healthcare interventions, e.g. new drugs or other new treatment strategies, commonly include a cost-effectiveness analysis (CEA) that is based on the application of health economic (HE) models. As end users, patients are important stakeholders regarding the outcomes of CEAs, yet their knowledge of HE model development and application, or their involvement therein, is absent. This paper considers possible benefits and risks of patient involvement in HE model development and application for modellers and patients. An exploratory review of the literature has been performed on stakeholder-involved modelling in various disciplines. In addition, Dutch patient experts have been interviewed about their experience in, and opinion about, the application of HE models. Patients have little to no knowledge of HE models and are seldom involved in HE model development and application. Benefits of becoming involved would include a greater understanding and possible acceptance by patients of HE model application, improved model validation, and a more direct infusion of patient expertise. Risks would include patient bias and increased costs of modelling. Patient involvement in HE modelling seems to carry several benefits as well as risks. We claim that the benefits may outweigh the risks and that patients should become involved.
authors.affiliation: Biometris, Wageningen University and Research Center, P.O. Box 16, 6700 AA, Wageningen, The Netherlands. george.vanvoorn@wur.nl.
authors.forename: George A K
authors.initials: GA
authors.lastname: van Voorn
authors.affiliation: Groningen University, Pharmacoepidemiology and Pharmacoeconomics (PE2), Groningen, The Netherlands.|Department of Epidemiology, University Medical Center Groningen, Groningen University, Groningen, The Netherlands.
authors.forename: Pepijn
authors.initials: P
authors.lastname: Vemer
authors.affiliation: Lung Foundation Netherlands, Amersfoort, The Netherlands.
authors.forename: Dominique
authors.initials: D
authors.lastname: Hamerlijnck
authors.affiliation: Institute for Medical Technology Assessment (iMTA), Erasmus University, Rotterdam, The Netherlands.
authors.forename: Isaac Corro
authors.initials: IC
authors.lastname: Ramos
authors.affiliation: Lung Foundation Netherlands, Amersfoort, The Netherlands.|Department of Medical Humanities, VU University Medical Center, EMGO+, Amsterdam, The Netherlands.
authors.forename: Geertruida J
authors.initials: GJ
authors.lastname: Teunissen
authors.affiliation: Institute for Medical Technology Assessment (iMTA), Erasmus University, Rotterdam, The Netherlands.
authors.forename: Maiwenn
authors.initials: M
authors.lastname: Al
authors.affiliation: Department of Epidemiology, University Medical Center Groningen, Groningen University, Groningen, The Netherlands.|Center for Nutrition, Prevention and Health Services Research, National Institute for Public Health and the Environment (RIVM), Bilthoven, The Netherlands.
authors.forename: Talitha L
authors.initials: TL
authors.lastname: Feenstra
mesh_terms: D003362:Cost-Benefit Analysis / Q000706:statistics & numerical data*; D004470:Economics, Medical / Q000706:statistics & numerical data*; D006296:Health Services / Q000191:economics*; D006801:Humans; D018803:Models, Economic; D009426:Netherlands; D010358:Patient Participation