Developing recommendations
The point of PREFER is to develop evidence-based recommendations on how and when to include patient perspectives on benefits and risks of medicinal products. The aim is to support development of guidelines for industry, Regulatory Authorities and HTA bodies.
We begin by defining the scope of the recommendations and preparing operational requirements and best practices for conducting clinical case studies. By the middle of 2019, we will have drafted recommendations and asked stakeholder advisory groups to test them to see how they work for other disease areas and decision points. By the middle of 2021 we expect to have a refined draft. Final recommendations will be presented in the spring of 2022.
Our recommendations will be based on the results of our work with methodology and clinical case studies.
Find out who is doing the work
Progress
Assessing methods
We start our work with a literature review, interviews and focus group meetings with patient organisations, physicians, regulatory authorities, health technology assessment bodies, industry experts and academics on their key concerns, needs, expectations and desires on the assessment and use of patient preferences.
Through clinical case studies
We are running three core PREFER patient preference studies looking at lung cancer, rheumatoid arthritis and neuromuscular disorders. Both academic and industry partners have added studies to the PREFER portfolio that will help us cover different disease areas, methods and research questions.
Developing recommendations
By the middle of 2019, we will have drafted recommendations and asked stakeholder advisory groups to test them to see how they work for other disease areas and decision points. By the middle of 2021 we expect to have a refined draft. Final recommendations will be presented in the autumn of 2021.