Data Collection in Care Homes for Older Adults: A National Survey in England

Context: In many countries, there is a specification for information that should be collected by care homes. So-called ‘minimum data-sets’ (MDS) are often lengthy, and report on resident health and wellbeing, staff, and facilities. In the UK, the absence of any easily accessible data on the care home population was highlighted at the start of the COVID-19 pandemic. Care homes faced multiple requests for data from external agencies who had little knowledge of what care homes were already collecting. Objective: This study aimed to identify the range (and method) of data collected by care home organisations, in a country without a mandated MDS. Methods: Online survey of care homes (with/without nursing) in England. Care homes recruited via research and care home networks, social media. Questions covered data content, storage, and views on data sharing, analysed with descriptive statistics. Findings: 273 responses were received, representing over 5,000 care homes. Care homes reported extensive data on the health, care and support needs of individual residents, their preferences, and activities. Clinical measures and tools adopted from health were commonly used, but few collected information on quality-of-life. Care homes reported uses of these data that included monitoring care quality, medication use, staff training needs, budgeting, and marketing. Concerns over privacy and data protection regulations are potential barriers to data sharing. Implications: These findings challenge the notion that incentives or mandates are required to stimulate data collection in care homes. Care home organisations are collecting an extensive range of resident-level information for their own uses. Countries considering introducing social care records or an MDS could start by working with care home organisations to review existing data collection and evaluate the implications of collecting and sharing data. A critical approach to the appropriateness of health-related tools in this setting is overdue.