Putting it into Practice

Title: Including the patient voice in the development and implementation of patient‐reported outcomes in cancer clinical trials.
Author: Bonnie Addario, Jan Geissler, Marcia K. Horn, Linda U. Krebs, Deborah Maskens, Kathy Oliver, Ananda Plate, Erin Schwartz, Nicole Willmarth.
Date Published: 2019
Reference: Health Expectations, [Epub ahead of print] doi.org/10.1111/hex.12997
Are service users or carers authors: Yes

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

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