Do We Really Need a Study Looking at That? A Best-Worst Scaling Study Assessing Methodological Research Priorities According to the Patient Preference Research Community

Speaker(s)

Smith I1, DiSantostefano R1, Falahee M2, Jimenez-Moreno C3, Oliveri S4, Veldwijk J5, De Wit GA6, Janssen E1, Berlin C7, Groothuis-Oudshoorn K8
1Janssen Research & Development LLC, Titusville, NJ, USA, 2Rheumatology Research Group, Institute of Inflammation and Ageing, College of Medical and Dental Sciences, University of Birmingham, Birmingham, UK, 3Patient-Centered Research, Evidera, London, UK, 4Applied Research Division for Cognitive and Psychological Science, Istituto Europeo di Oncologia, IEO IRCCS, Milan, Italy, 5Erasmus School of Health Policy & Management, Erasmus University Rotterdam, Rotterdam, Netherlands, 6Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, Utrecht University, Utrecht, Netherlands, 7Novartis Pharma AG, Basel, Switzerland, 8Health Technology and Services Research, Techmed Centre, University of Twente, Enschede, Netherlands

OBJECTIVES: There is growing interest from patients, advocacy groups, government agencies, and the pharmaceutical industry in the use of data from studies of patient preferences to inform decision making across the medical product lifecycle. However, there are unanswered questions related to methodological requirements for such studies. The PREFER project was launched in 2016 to address some of these questions. As PREFER ends there is a need to look to the future and see which research topics and methodological questions stakeholders prioritize to increase confidence in and acceptance of patient preference research for decision-making throughout the medical product lifecycle.

METHODS: 19 methodological topics and questions were identified as being high priority areas of research by PREFER consortium members. These were assessed in a survey containing a Best-Worst Scaling exercise and direct assessments of importance for future research which was sent to stakeholders active in the field of patient preference research.

RESULTS: 101 people responded to the survey invitation of which 66 complete responses and 2 partial responses to the BWS exercise were received. The most important questions related to which preference assessment method to use in a given context, synthesis of multiple preference studies, and changes in preferences over time. Differences in ranking were found between respondents who classified themselves as working in academia vs not in academia.

CONCLUSIONS: Changes in the questions and topic prioritization since the beginning of PREFER to indicate that there is growth not only in interest in the field, but also the evidence and methodological priorities that stakeholders have. We encourage the patient preference community to continue contributing toward methodological evidence around patient preference studies to ensure they are robust and able to inform medical product decisions.

Code

PCR76

Topic

Patient-Centered Research

Topic Subcategory

Instrument Development, Validation, & Translation, Patient Engagement, Patient-reported Outcomes & Quality of Life Outcomes, Stated Preference & Patient Satisfaction

Disease

No Additional Disease & Conditions/Specialized Treatment Areas