Patient input for more valuable patient preferences


Patients want to be involved in research about them. In a paper recently published in Frontiers in Medicine, PREFER researchers explore how patients want to be involved in patient preference studies, how they want it to work in practice and where they think their contribution will add most value to a patient preference study. 

Involving patients in the design and evaluation of patient preference studies has clear benefits. But patient involvement also needs to happen the right way. Roles, time commitments, and compensation need to be agreed on early on, and patients’ personal situations have to be considered.

Patient advisors and collaborators can be useful throughout the process of conducting a patient preference study. Not only can they help formulate relevant questions, they can also be involved for optimal interpretation of study results.

Return of results to patients is another important issue and can be an incentive for participation. According to the authors, patients want to know what they helped create. A brief and lay summary of results, and an opportunity to get a more detailed explanation of results is important.

“Patients helping researchers ask the right questions in patient preference studies ensures the results will be relevant; which makes them valuable to support decision-making. Spending time setting up clear agreements on patient involvement at the beginning of a patient preference study can have clear benefits at the end,” Eline van Overbeeke, one of the authors, concludes.

By Anna Holm

van Overbeeke, E., Vanbinst, I., Jimenez-Moreno, A.C., and Huys, I., Patient Centricity in Patient Preference Studies: The Patient Perspective, Frontiers in Medicine, 20 March 2020. 

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