Abstract: Aim: To show how involving patients at all stages of patient reported outcome (PRO) development improves the quality of PROs.
Method: The authors combined good practice examples from the literature with guideline recommendations, training or educational resources, and with their own experience to create detailed practical steps for the inclusion of patients throughout PRO development.
Findings: Patient can play an active role in shaping PROs that are meaningful to the patient. They can contribute to the content and the way the information is collected to avoid missing data. They can also help ensure research findings are disseminated in a way that is accessible to patients.
Conclusions: This practical guidance aims to optimise PRO development and their use in clinical trials, resulting in robust, relevant data that reflect the patient experience and that support decisions made by all stakeholders involved in research and health care.
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Categories: journal article researchers relevant to all service users guidance/guidelines lessons from direct experience of involvement designing of research
Date Entered: 2020/01/23
Date Edited: 2020/01/23