Table 1 Summary table of health register vision/aim categories from survey and web scan data
Category | Survey | Web scan |
|---|---|---|
Involvement in activities | Research, knowledge generation, collaboration, planning services, creating clinical tools (n = 9) | Research, knowledge generation, collaboration, planning, responding to queries, surveillance, informing future care, informing resource needs, prevention programmes (n = 9) |
Improve / optimise | Incidence, quality of care and healthcare-related outcomes, healthcare delivery / services, health outcomes, data quality, management of healthcare / health condition, participation, quality of life (n = 8) | Incidence, quality of care, access to the register and clinical services, outcomes, care pathways, health and wellbeing, health professional awareness of health condition, treatment (n = 7) |
Descriptive epidemiology | Prevalence, incidence, outcome, predictors of outcome, mortality, causal pathways, access to care / treatment (n = 10) | Prevalence, causal pathways, management, severity, mortality / morbidity, condition impacts / effects (n = 4) |
Being/ becoming a high-quality register | Complete data, providing “equal treatment”, being sustainable, having a well-coordinated team, aligning with best practice (n = 7) | Complete data, “equal treatment”, consistent coding, sustainable funding, research / initiatives (n = 4) |
Monitoring | Data quality, quality of care, performance of healthcare / treatment / management, performance of health service delivery (n = 7) | Quality of care, clinically high-risk families (n = 2) |