Patient-reported outcomes (PROs) are an essential element to demonstrate the value of a health intervention. In many ways, PROs represent the ultimate “real-world” data, yet the drive towards “Big Data” has focused on
routinely collected data from healthcare databases, which often do not include assessments of PROs or the patient voice. Effective planning of PRO publications requires an in-depth understanding of the planned
studies, the opportunities these provide for publications, and how clinicians, patients, and caregivers may contribute as authors to provide validation of results. Mainstream clinical journals and conferences should be targeted wherever possible, considering the availability and objectives of “enhanced publication” options and open access to increase reach, comprehension, and impact. PRO publications must be written in a clear and engaging way, explaining the instrument in simple terms, and addressing the “so what?” question – ideally with an accompanying plain language summary. And PRO publications must always thank the patients.
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Victoria White
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