Minimum Data Sets (MDSs) are like buses – you wait for ages for one and then they all suddenly appear!
Liz Jones – Policy Director; National Care Forum
Julienne Meyer – Professor of Nursing: Care for Older People; City, University of London
Data and information in social care has gone from the wilderness, pre-pandemic when no-one was really interested and it was a bit of a niche subject, to the sunlit uplands of enthusiasm and focus. This presents huge opportunities and some big risks.
There is a real opportunity now to co-create with social care providers, researchers, commissioners, regulators, national and local policy makers and other key stakeholders a data and information picture that will help monitor and improve quality in social care settings. However, this must be done with the people who use social care services now and those who may in the future, their families and service providers if we are to produce something that is meaningful and useful in practice. Monitoring alone is not enough, it needs to inform quality improvement. Imagine the potential influence for good if social care had a platform to describe its customer base, support its offer, identify unmet need, share records across agencies, reduce duplication of paperwork, identify gaps in health and social care provision, inform work force planning, and transparently benchmark care for the benefit of individuals and wider society.
The risks are also potentially great – especially if those busy shaping the sunlight uplands have learnt nothing from our times in the wilderness, nor from the lack of available data during the pandemic. Suddenly, there is a huge interest in creating a Minimum Data Set for social care – DACHA started its research pre-pandemic – co-creating and piloting an MDS; but now government is forging ahead with its own MDS and we need to ensure that this is informed by research. Before we are seduced by any vision, let’s just take stock a bit.
So far, the DACHA study in England has carefully researched, in partnership with residents, relatives and staff in care homes, together with other interested parties, what information is important when measuring residents’ health and wellbeing and how that information can be shared and used by different practitioners and organisations. This has led to a draft MDS that we are about to pilot and test in practice, using a shared care record in three geographically dissimilar areas that are already working to integrate health and social care data. This pilot will investigate:
- if it is possible to collect data directly from care homes and then match this to data already being collected about residents in health and social care settings
- what is the quality of the data collected
- how can the data be used to provide better, joined up health and social care for residents and
- what must be in place to enable wider roll out of a minimum data set for care homes in England?
Post-pandemic, the government in England is also devoting some effort to produce an MDS for social care and have invested in a couple of projects. The first is the Digital Social Care Record project, being led by National Health Service England Improvement (NHSEI) which is exploring what data should be held on individuals in receipt of care and shared through a digital social care record. The focus is on supporting social care providers to capture real-time information about the people using their service, including their direct health and social care needs, which can be shared with other health and care services they use, so that they do not have to spend time providing the same information about themselves repeatedly. Care providers will also be able to view relevant information about the people for whom they care on the NHS record.
The second project is led by the Department of Health and Social Care (DHSC) to create a social care data collection set to replace the ‘mish-mash’ of data collected during the pandemic, using the Capacity Tracker. This MDS focuses on understanding better the social care workforce and the experiences of care users, as well as seeking to offer the benefit of providing standardised, sector-wide data to enable benchmarking and knowledge sharing for care providers. The aim is to streamline data requests so that information can be captured once and shared with all those that need it, such as commissioners and inspectors in the National Health Service and local authorities, Care Quality Commission, national government, and others.
How is all this coming together and where is the voice of the person whose data it is? It is time not only to take stock on who is doing what but also how it is being undertaken. People developing data sets need to work together and ask what we want to understand from an MDS, whose data it is, who will gather it, who will interpret it, and who will pay for it.
The Public Records Standards Body (PSRB) has already done sterling work and plan to do more. For example, they have created an ‘About Me’ standard covering the most important details that a person wants to share with professionals in health and social care – this might include how best to communicate with the person, how to help them feel at ease or details about how they like to take their medication. This standard also covers how the information should be documented and shared in health and care records.
In addition, there are some key learnings from the DACHA study which have considered carefully the voice of people living in care homes. These include some key principles highlighting the importance of having a focus on measuring what matters most to support those living in care homes, any MDS being based on evidence, and that data sharing with external users of the MDS must have an agreed purpose with care home residents’ privacy rights being protected and data sharing being defined and formalised in data sharing agreements.
The DACHA study also recognises that data is not free and so any MDS must reduce data burden and duplication of effort for the care home; it finds that digital care records are critical underpinnings of any proposed MDS and that care homes must be supported to access and use MDS data. It also finds that any MDS must bring together different data sources, which this means that the MDS should join up data from the care home together with data held elsewhere about residents and care services. There is a lot of data about people in care homes in other systems, especially the NHS. This data is very important and needs to be shared more broadly to improve quality of care.
Developing an MDS is complicated and should not be hurried. It is key that this work is done well, underpinned by good evidence and includes co-production with people using care and support services, together with social care providers delivering those services.
The experience of the Capacity Tracker for social care (see previous DACHA blog, ‘Suddenly social care data matters! So let’s future proof it properly’, July 7, 2021) during the pandemic no doubt offers a lure to commissioners, policy makers and ministers, with the impression that data can be required from providers as and when it is deemed ‘necessary’, without a strategic consideration of what data, why, for whom, from whom, how supplied (interoperability challenges abound), how it is interpreted and used and how it is resourced.
Alongside this, we have the passing of the Health & Care Act which brings powers for the government to require data from social care providers with potential penalties for failing to comply – this raises the data stakes considerably!
It is essential that we together take the time to think about what we want to understand from an MDS, whose data it is, who will gather it, who will interpret it and who will pay for it. Otherwise, the sunlight uplands will become a disillusioned desert and tax-payers money will be wasted. Having waited a long time for the bus to come, we are at risk of being run over!
Funding Acknowledgement and Disclaimer
This study/project is funded by the National Institute for Health and Care Research (NIHR) Health Service Research and Delivery programme (HS&DR NIHR127234) and supported by the NIHR Applied Research Collaboration (ARC) East of England.
The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.