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. |