PREFER

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.

Progress report

progress: understanding stakeholder concerns

progress: methodologies and assessment criteria