Patient Preferences in the Medical Product Life Cycle: What do Stakeholders Think? Semi-Structured Qualitative Interviews in Europe and the USA

Rosanne Janssens (), Selena Russo, Eline van Overbeeke, Chiara Whichello, Sarah Harding, Jürgen Kübler, Juhaeri Juhaeri, Karin Schölin Bywall, Alina Comanescu, Axel Hueber, Matthias Englbrecht, Nikoletta Nikolenko, Gabriella Pravettoni, Steven Simoens, Hilde Stevens, Richard Hermann, Bennett Levitan, Irina Cleemput, Esther de Bekker-Grob, Jorien Veldwijk and Isabelle Huys
Additional contact information
Rosanne Janssens: KU Leuven
Selena Russo: IEO European Institute of Oncology
Eline van Overbeeke: KU Leuven
Chiara Whichello: Erasmus University Rotterdam
Sarah Harding: Takeda International
Jürgen Kübler: QSciCon
Juhaeri Juhaeri: Sanofi
Karin Schölin Bywall: Uppsala University
Alina Comanescu: Community Health Association Romania
Axel Hueber: Friedrich-Alexander-Universität Erlangen-Nürnberg and Universitätsklinikum Erlangen
Matthias Englbrecht: Friedrich-Alexander-Universität Erlangen-Nürnberg and Universitätsklinikum Erlangen
Nikoletta Nikolenko: Newcastle University
Gabriella Pravettoni: IEO European Institute of Oncology
Steven Simoens: KU Leuven
Hilde Stevens: Université libre de Bruxelles
Richard Hermann: AstraZeneca
Bennett Levitan: Janssen Research & Development
Irina Cleemput: Belgian Health Care Knowledge Centre (KCE)
Esther de Bekker-Grob: Erasmus University Rotterdam
Jorien Veldwijk: Erasmus University Rotterdam
Isabelle Huys: KU Leuven

The Patient: Patient-Centered Outcomes Research, 2019, vol. 12, issue 5, No 7, 513-526

Abstract: Abstract Background Patient preferences (PP), which are investigated in PP studies using qualitative or quantitative methods, are a growing area of interest to the following stakeholders involved in the medical product lifecycle: academics, health technology assessment bodies, payers, industry, patients, physicians, and regulators. However, the use of PP in decisions along the medical product lifecycle remains limited. As the adoption of PP heavily relies on these stakeholders, knowledge of their perceptions of PP is critical. Objective This study aimed to characterize stakeholders’ attitudes, needs, and concerns with respect to PP in decision making along the medical product lifecycle. Methods Semi-structured interviews (n = 143) were conducted with academics (n = 24), health technology assessment/payer representatives (n = 24), industry representatives (n = 24), patients, caregivers and patient representatives (n = 24), physicians (n = 24), and regulators (n = 23) from seven European countries and the USA. Interviews were conducted between April and August 2017. The framework method was used to organize the data and identify themes and key findings in each interviewed stakeholder group. Results Interviewees reported being unfamiliar (43%), moderately familiar (42%), or very familiar (15%) with preference methods and studies. Interviewees across stakeholder groups generally supported the idea of using PP in the medical product lifecycle but expressed mixed opinions about the feasibility and impact of using PP in decision making. Interviewees from all stakeholder groups stressed the importance of increasing stakeholders’ understanding of the concept of PP and preference methods and ensuring patients’ understanding of the questions asked in PP studies. Key concerns and needs in each interviewed stakeholder group were as follows: (1) academics: investigating the validity, reliability, reproducibility, and generalizability of preference methods; (2) health technology assessment/payer representatives: developing quality criteria for evaluating PP studies and gaining insights into how to weigh them in reimbursement/payer decision making; (3) industry representatives: obtaining guidance on PP studies and recognition on the importance of PP from decision makers; (4) patients, caregivers, and patient representatives: providing an incentive and adequate information towards patients when participating in PP studies; (5) physicians: avoiding bias as a result of commercial agendas in PP studies and clarifying how to deal with subjective and emotional elements when measuring PP; and (6) regulators: avoiding the misuse of PP study results to overrule the traditional efficacy and safety criteria used for marketing authorization and obtaining robust PP study results. Conclusions Despite the interest all interviewed stakeholder groups reported in PP, the effective use of PP in decision making across the medical product lifecycle is currently hampered by a lack of standardization and consensus on how to both measure and use PP.

Date: 2019
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DOI: 10.1007/s40271-019-00367-w

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