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Table 4 Key recommendations for PROM developers

From: Public involvement in health outcomes research: lessons learnt from the development of the recovering quality of life (ReQoL) measures

Recommendations for PROM developers:
• Consider how to involve service users in every phase of the development process
• Extensive service user involvement needs to be adequately planned and budgeted for
• Outcome measures from which items are taken are first checked that they have been co-constructed by service users and if not whether the items are acceptable to service users
• Include expert service users who are diverse
• Include expert service users who are able to reflect the views of other service users
• Involve expert service users in recruitment to studies, in data collection and analysis
• Provide service users with an opportunity to meet independently to voice their views and concerns and ensure that they are appropriately briefed
• Research teams should prepared to resolve disagreements by having some clear guidelines from the beginning about how to reach a resolution
• Researchers should be prepared to devote time and effort to make technical materials accessible to expert users
• How the impact of service user involvement throughout the PROM developmental process should be considered.