Developing CASCID, a new centralised catalogue for social care data
Social care research has historically struggled with a lack of social care data, but in recent years there has been a welcome increase in both collection and availability. A challenge now is to help researchers and other interested users to use the data: to help them to know what data are available on what social care issues. Here Ed Stubbs, Martin Knapp, Raphael Wittenberg and Derek King, all researchers at the LSE Care Policy and Evaluation Centre, discuss how they developed the Catalogue of Social Care Data (CASCID) to make it easier for people to find social care data and encourage its use in research and other contexts.
According to the Department of Health and Social Care’s 2023 Roadmap for transforming adult social care data, data ‘matters for making sure people get the right care, for planning how care is organized and for joining up health and social care services around people. It can make lives better and, ultimately, can save lives.’ Emergency measures to enable more data to be collected from providers during the COVID pandemic, the Department notes, produced a ‘step change in our understanding of care’ and ‘sector wide benefits’; something their Roadmap aims to build upon over forthcoming years.
However, the elements of the UK’s social care system remain diverse. They include those people and organisations who pay for or commission care; individuals and organisations who provide it; the care needs that people experience; and the models of care that are available. This diversity makes data collection, and its aggregation, extremely difficult.
Developing the catalogue
To meet this challenge, we have developed the new Catalogue of Social Care Data (CASCID) with funding support from NIHR SSCR. Open for anyone to use, it provides users with a range of methods to search through measures related to social care from 43 datasets.
The development of CASCID was inspired by the work of researchers at King’s College London’s (KCL) who had already developed the Catalogue of Mental Health Measures. Professor Louise Arseneault, Lily Strange, Bridget Bryan and Georgia Andrews taught our team how to collect measures as we toiled through a seemingly endless consignment of study documentation from many datasets (often long surveys) to find data items which concerned needing, receiving, or providing social care.
The resulting website resembles an online marketplace which collects products from across a wide range of companies. Ask our search function a query and it will search through all of the datasets on the website and bring back all measures from prominent UK datasets which feature any social care questions relevant to the specified query. Our catalogue website then gives a weblink to, and detailed information about, the organisation which holds the data for the measures found.
The catalogue is useful in not just displaying what social care data exists but also in bringing back null results to queries, showing researchers what data is currently lacking in the sector. If catalogue users do not know what they want to search for, there is also the option of browsing inside datasets or across all the recorded measures on the website; a form of ‘window-shopping’ for social care data.
How to use the catalogue
So, what types of measures does the catalogue actually contain? Here are three examples. If you search for questions that relate to ‘carer’ you will be met with a list of 261 measures from 19 of the datasets. The topics of such carer-related questions include length of time caring each week, views about the carer’s control over life, and information about the support services they access. Suppose you ran a second search, specifying that data items must be a ‘standard measure’ (an established set of measures widely used by researchers to assess a topic). That search would currently bring up 75 new measures across three datasets concerning the ability to complete activities of daily living (ADLS), the quality of life of care recipients and more.
For our third example let’s suppose you are not an expert on the social care sector, but interested in the mental health of service users and carers? You could run a search specifying that the response scale (answer options given for a question) must include the word ‘depressed’. This gives 11 measures across three datasets concerning the ‘current physical and mental health’ of care users, the effect of caring on a carer’s health amongst many other topics. The second measure, related to the carer, would have come up in my first search example but it would have been hard to spot alongside 260 other measures, especially when searching through every entry’s response scale manually.
As the three search examples above illustrate, the amount and types of searches website users can run are limitless. We hope our catalogue will enhance the usage of existing social care data by enabling users to see what data currently exists through displaying measures from multiple data sources. We anticipate harmonisation of data (using similar or identical measures to collect information) will also be encouraged as researchers see the types of measures already collected and subsequently design the data they collect to be comparable. Noticeable gaps in social care data – evident after a quick search of the website – might entice researchers to fill them. Finally, the catalogue offers an opportunity for researchers from other specialisms to find social care data without requiring prior knowledge of what datasets exist or where to find them.
Please do look at CASCID and see if it can support your own work. There is a feedback form on the website for you to send us your comments. We welcome recommendations of other datasets that we should include, as well as general opinions about the catalogue.
The team will add more datasets in coming months and keep the website updated when new sweeps are released for the included datasets. This will ensure that CASCID identifies and describes the most up-to-date social care data, driving better-informed practice across the sector which we hope works in harmony with the government’s ambitions for enhancing routine data collection.
Visit CASCID, the Catalogue of Social Care Data
Watch a short video demo of CASCID
Read NIHR Social Care Speciality posts here →