How should we measure the use of social care and informal care?

Meaningful economic evaluation relies on the accurate assessment of not only patient-relevant outcomes but also resource use affected by a choice of intervention. Economic evaluations conducted from the societal perspective, which is standard in some jurisdictions (e.g. The Netherlands [Citation1] and the US [Citation2]) require all relevant societal costs and benefits to be assessed, including social care and informal care, alongside healthcare resources. Formally defining social care is challenging [Citation3] but, broadly, it describes care that is intended to help people to live independently, and can include help with bathing or eating, for example. The definition of informal care is also complex [Citation4], but was described as ‘care provided by a relative, friend or the community in an unpaid role’ by a public advisory group convened by the authors.

Typically, healthcare resource use is well characterized in economic evaluation and relatively easy to measure, with a range of measurement methods at the analyst’s disposal. These include patient self-report and the use of routinely collected data in mature data collection systems such as the Hospital Episode Statistics dataset in England or the National Patient Register in Sweden. When it comes to measurement of social care, however, the picture is far less clear. In the UK, routinely collected social care datasets exist, but in fragmented independent sources rather than a coherent national format, which makes them challenging to use in economic evaluation. Furthermore, little work has been conducted to ascertain their fitness for research purposes, considering that the data are collected in order to run the services effectively, and are not designed to be used for research.

Informal care is indelibly linked to social care; where social care services are lacking, informal care may be substituted. The inclusion of informal care can also change the cost-effectiveness outcomes of a study [Citation5]. For informal care, there has been much written about the nature of the caregiving burden [Citation6]. However, less attention has been paid to measurement of the informal care costs for economic evaluation, with a systematic review by Grosse et al finding a lack of consensus arising from both the difficulty in distinguishing caregiving activities from everyday activities and the lack of an agreed definition leading to variability in what is collected in economic evaluations [Citation7]. Furthermore, there is no possibility of using routine datasets that capture the full extent of caring activities and the economic impact of informal care, and participant self-report will therefore remain necessary.