The first phase of PREFER has been focused on the elicitation of stakeholders concerns and priorities, the identification of medical decision points across the medical products life cycle, the examination and prioritization of patient preference methods and methodological research questions. 33 preference exploration and elicitation methods were characterized and appraised. 56 instruments for measuring 29 psychological constructs were identified and assessed with regard to how they may explain patient’s preferences heterogeneity and psychological factors affecting preference formation. 33 publications so far provide reports of the project. In addition, PREFER has contributed at several international scientific conferences with organisations such as IAHPR, ISPOR, ECQI, HTAi, SMDM and DIA.
Based on discussions with the Scientific Advisory Group and the different stakeholder groups associated with PREFER (Regulators, HTA, Patients) a focused strategy identifying a selected number of methods and research questions that may lead to effective recommendations has been adopted. The second phase of PREFER aimed at evaluating preference methods and research questions in clinical context where there is a preference sensitive decision to be made, i.e. one where information about patient preferences may provide an added value to regulators, HTA and industry when making their decisions. Three core clinical case studies have provided results which informed the PREFER Recommendations. Data have been gathered on the use of Discrete Choice Experiments (DCE), Best-Worst Scaling, Threshold techniques, and Swing-Weighting with comparisons of a number of other methods for the elicitation of patient preferences. Four additional industry led case studies have presented interesting results both from explorative studies and quantitative based methods. Four additional case studies have been conducted from academic partners. 10 of these 11 case studies have delivered their final reports. One industry led case study will soon be finalised. One case study on eye-tracking could not be carried through due to the COVID-19 situation that has prevented meetings both with patients and health care professionals. These clinical case studies responded to a great number of the PREFER methodological research questions identified in the first phase of the project and results have been integrated in the PREFER recommendations and in the Qualification Opinion process that PREFER has initiated jointly with EMA and EUnetHTA.
While PREFER focussed on scientific questions, operational aspects are equally important for the credibility of patient preference studies. To that end, PREFER developed an operational best practice document that got informed by stakeholder needs and learnings from case studies. A set of training materials have been published to inform researchers on how to conduct patient preference studies.
