Abstract
Patient burden surveys capture patient reported outcome (PRO) data, but can be limited by poor understanding of the disease area and a lack of patient access. Patient advocacy groups’ (PAGs) unique understanding of, and access to, their patient community can facilitate PRO research on the patient experience. However, there is a lack of research exploring effective methods for collaboration with PAGs. Here we establish a best practice framework for successful PAG engagement in future PRO research.
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