Patient preferences: why, how and when
Patient preferences can give us information that is critical for developing medical treatments. But they can also tell us how much risk patients think is acceptable for a given benefit. The methods to find out, or ‘elicit’ patients preferences are there, but decision makers are not sure how to assess and use them.
Most patients have to accept treatments that come with both benefits and harms. The pharmaceutical industry, regulatory authorities, health technology assessment bodies, reimbursement agencies and patient organisations all agree that their perspective, or what is known as ‘patient preferences’, needs to be part of decision making on benefit and risk. But how? When? And what are the regulatory requirements for preference studies?
There are many methods to elicit patient preferences and large amounts of scientific literature. What is missing is a structured approach that takes all these perspectives into account. The PREFER project will find out what the key stakeholders think is important.
Finding out what stakeholders want
We will start 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. This work will help us determine what needs to be addressed in the next step, where we conduct clinical case studies and simulations of preference studies. This work ensures that the final recommendations from this project addresses the issues all stakeholders raise.
Identifying methods and criteria for testing
The literature review will identify methods for preference elicitation, education and psychological measures methods. We will look at both quantitative and qualitative methods. The review will be based on a set of criteria to determine which methods are suitable at different decision points in the drug life cycle. The result will be a report on candidate methodologies and assessment criteria to go forward for testing in the next project step.
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.
Coming soon: Clinical case studies
PREFER is planning patient preference studies in three disease areas where patients and clinical research partners already provide expertise: cancer, rheumatoid arthritis and neuromuscular disorders. Further on, both academic and industry partners will add more patient preference studies studies that will help us cover different disease areas, methods and research questions.
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.