OBJECTIVES: Incorporating patient preferences into decision-making has become increasingly important in the goal to strengthen patient-centric healthcare. PREFER is a 5-year research project funded the Innovative Medicines Initiative (IMI), aiming to improve the integration of patient preferences throughout the medical product lifecycle MPLC. This phase of the project aimed to identify: 1) when patient preference (PP) studies can be most successful and useful in the MPLC, 2) which methods and instruments can be used to design and execute PP studies, 3) and what are key stakeholder insights into the challenges and opportunities for successful implementation.

METHODS: This phase of the project included diverse qualitative and quantitative steps, including 1) five systematic and scoping literature reviews of white and grey literature, 2) 153 semi-structured interviews with stakeholders (industry, regulatory authorities, reimbursement/health technology assessment bodies, physicians, academics, patient organisation representatives, caregivers, and patients), 3) 10 focus groups with stakeholders, 4) four Q-methodology surveys, 5) four analytic hierarchy process surveys, 6) two rounds of consultations with international health preference experts.

RESULTS: Key issues were identified surrounding: 1) why PP studies should be conducted, 2) where and when PP studies should be implemented, 3) how a PP study can be designed and planned, 4) how PP data can be collected, 5) how PP data can be analysed, 6) barriers and facilitators to wider PP study acceptance.

CONCLUSIONS: The key findings from this phase of the PREFER project, exploring how and when PP information can be successfully implemented into decision-making contexts, are rich and promising. These results will be evaluated in clinical case studies of different disease types and simulation studies in the next phases of the project in order to generate recommendations to guide stakeholders towards integrating PP information into MPLC decision-making.

Support received from EU/EFPIA IMI[2] Joint Undertaking PREFER grant n°115966