This is a guest blog by Dr Elizabeth Lemmon (University of Edinburgh) and Dr David Henderson (Edinburgh Napier University).
The Unanswered Questions
Do older people in need of care in Scotland get it? Do social care services prevent unnecessary hospital admissions? What is the quality of life like for an older person with dementia who lives at home with their partner? Indeed, what is the quality of life for their partner?
These are just some of the questions in the health and social care system that we don’t have answers to. As the population continues to age and as local government budgets continue to be squeezed, the need to answer these questions is ever increasing.
In this area there is good news, better news and, unfortunately, some not so good news.
The Good News
Scotland is in a unique position to answer these questions.
In particular, for many years, the Scottish Government routinely collected data on all social care services delivered across the thirty-two local authorities in Scotland via its Social Care Survey (SCS). There are no comparable national-level social care data collections elsewhere in the UK. From 2010/11, the survey collected individual-level data from each local authority including information on the types and amounts of social care provided and commissioned by each local authority.
The collection and quality of the SCS data improved over time and in 2017 a new adult social care data collection, administered by the Information Services Division (ISD) of NHS Scotland, replaced the SCS. ISD have plans to increase the frequency of data recording by local authorities and improve the quality of the data collected. This should help us provide an even clearer picture of care delivery in Scotland.
The data that has been collected, like other administrative data sources, was not designed for research purposes, but the potential for it to be used in a research environment is ample.
The Better News
Researchers can request access to use SCS data directly from the Scottish Government. The potential for research using the SCS is boosted further by the possibility of data linkage. That is, linking individual-level data from multiple sources e.g. health and social care records. Approval for this sort of research is granted via the Public Benefit and Privacy Panel (PBPP).
Linkage opens a host of avenues to researchers that can help tackle those pressing questions about our ageing population in ways that were previously impossible.
Over the past decade, Scotland has made major advances in developing infrastructure to provide a data linkage service, which has enabled such research to take place in a secure setting. This has occurred in tandem with strict Information Governance (IG) procedures ensuring the privacy of individuals information.
The PBPP was set up to review and scrutinise applications from researchers wishing to use NHS data and any projects which link NHS data to other sources e.g. social care data. The purpose of the panel is to ensure that the public benefit and privacy implications of projects have been fully thought through by applicants, and to ensure that the small risk to the privacy of individuals is even further minimised.
We were in fact two of the very first researchers to successfully gain access to linked SCS and health data (albeit for two separate projects). There is also future work planned to take advantage of improved data collections and assess any variations in access to social care services that may exist. Despite these advances, there is a dearth of research in this area in Scotland. You might wonder why that would be? Let us elaborate….
The Not so Good News
We put this down to a couple of reasons. Firstly, access to linked SCS and health data takes considerable time before becoming available to researchers. In our experience, from the point of receiving approval from the PBPP to accessing data, took approximately two years. These kinds of time scales simply aren’t conducive to producing timely and policy relevant research (nor to early career researcher’s funding deadlines). Efforts are underway to improve this process but progress is slow, and no firm plans have been released.
Secondly, as we have mentioned, the data are not designed for research purposes. This often means there are large differences in recording practices across the country. Data quality issues include missing information and a lack of important variables which may be crucial to answering research questions. With the SCS in particular, the measures of client need are deficient, the information on the living arrangements of a client are poorly completed, as is information on support from unpaid carers.
Although we acknowledge that historically data has not been collected with research in mind, we wonder if it would be helpful to engage researchers in the design of the collection of data. This is not just to benefit researchers, but also to assist service delivery and answer the vital policy questions that government has.
From our perspective, we are lucky in Scotland to have a social care data-pudding. Most other countries only have crumbs of data that, when mixed, often taste a little sour. Whilst some pudding is always better than none, and we count ourselves very lucky to have had a taste of ours, it was a complex process to obtain it and when we eventually got there, we found it to be missing some key ingredients.
Going forward, we welcome the Office for Statistics Regulation’s new report into adult social care statistics in Scotland. In particular, their recommendation for Public Health Scotland and Scottish Government to convene a social care data user summit in 2020. A summit of this kind would allow researchers to share their experiences and knowledge in working with Scottish social care data, providing an opportunity to improve the use of this data in research and more importantly open up the discussion around common challenges associated with working with and accessing Scottish social care data. More broadly, the recommendation for a user summit aligns well with the recent Early Career Researchers Using Scottish Administrative Data (eCRUSADers) movement among the academic community, a platform which recognises the need and desire to share knowledge and experiences in using Scottish administrative data for research.
Dr Elizabeth Lemmon (University of Edinburgh) and Dr David Henderson (Edinburgh Napier University)