Holly Peay, PhD, on Patient Preference Research as a Means of Patient Expression
The senior research scientist at RTI International discussed how patient preference studies can help patients with rare diseases have their voices heard.
This is the second part of an interview with Holly Peay, PhD. For the first part,
“One of the things that we find often in preference research is that people living with conditions think differently than we might expect about what they want out of a treatment, what they hope for out of treatment, and what they will tolerate out of a treatment. I often work with different patient advocacy groups when I do these and often we find things that even advocate leadership who engage with people regular really didn't expect. Doing this kind of study is a really central way of getting patient voices [heard]—and not just the advocates who are at every meeting—but getting a broader group of patients who are able to make their preferences known in a systematic way.”
When it comes to the development of products belonging to relatively novel therapeutic modalities like gene therapy and cell therapy, especially for rare disease indications, it can be difficult to know what types of effect from such products patients would consider meaningful changes to their disease, and what risks they are willing to tolerate to receive this benefit. One way government agencies and academic institutions gather more information about this topic is through patient preference studies, in which members of the patient community for a particular disease are asked to give their own opinion on potential treatment options and outcomes. Notably, patient preference studies require skilled experts to conduct and can get quite expensive depending on the scale of the study and the number of patients involved.
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