Abstract
BACKGROUND: This project arose from discussions between the NHS Intgrated Care Board, Leeds City Council and Universities in West Yorkshire, UK which recognised the need to develop a core outcome set to capture the impact of voluntary and community sector organisations’ (VCSO) activities on health and wellbeing, in a way that can be routinely integrated with existing datasets on health and care activity across the region. This is a public health priority because the reach and impact of community organisations is a crucial mechanism in tackling health inequalities, and the NHS Long term plan includes a shift to health provision in community settings. METHODS: Following public engagement workshops, and community conversations held between the WYICB Research Engagement Network community research champions and members of the public, a World Café event was held in a community venue to collect views from a range of stakeholders: academic, policy, health and care services, VCSOs and community champions. Discussions were grouped around 6 table themes: Administrative burden; Core data & outcomes; Relationships of trust; What would good look like; Measures into intelligence; Next steps for action and feedback. Discussions were recorded, transcribed and analysed using thematic analysis. RESULTS: 71 stakeholders attended from a range of sectors. Following line by line coding the data was organised under the following themes: Administrative burden; Appropriateness of outcome measures; Language issues; Data security concerns; Diversity and inclusiveness; Training; Infrastructure; Community engagement; Power dynamics; Communication; Ownership of the data. CONCLUSIONS: If a core outcomes set for VCSO activity in West Yorkshire is to be successful, community organisations must be supported to collect, manage and share ownership of the data. The data itself must be relevant, appropriate and of value to communities, and the reasons for collecting it must be clearly explained. KEY MESSAGES: • Involving community organisations as equal partners in developing core outcomes sets to monitor their impact on health and wellbeing gives valuable insights into concerns of underrepresented groups. • Co-developing a core outcome set with community organisations that is relevant, appropriate, shared and easy to explain may increase response rates and fill in knowledge gaps in diverse communities.