Suddenly social care data matters! So let’s future proof it properly

For those of us who have been working for the last few years in the wilderness focusing on the importance of digital data and intelligence from social care, the pandemic has rightfully catapulted this issue into the spotlight!

As the recent National Audit Office report[1] highlights, the first wave of the pandemic demonstrated just how little data both central and local government held about adult social care, including people paying for their own care.

Very early on in the pandemic, the Department of Health and Social Care (DHSC) adopted the Capacity Tracker; this was originally a voluntary digital tool for care homes to share information about their vacancies with local authority and health commissioners looking for suitable places for people whose levels of frailty and ill health meant that they needed to move into a care home setting.   The Capacity Tracker then became the ‘pandemic data capture tool’ and was then regularly amended, with many additional questions, to require and capture a wider range of data from the wider adult social care sector to inform the emergency   response to COVID-19.

In February 2021, the Government announced plans in the white paper which set out legislative proposals for a Health and Care Bill[2], to build on the Capacity Tracker by consolidating and centralising data collection from adult social care providers for DHSC and other parts of the health and social care system – the creation of a new data strategy for health and care. Whilst this is welcome, we must learn from experience of the Capacity Tracker and find a better long-term solution.

In June 21, the government then published its draft data strategy for health and care which, on an initial read, does not appear to have benefitted from and used the learnings from the Capacity Tracker experience.

The Capacity Tracker represents an amalgamation of emergency pandemic data collection, built on short-term requests for pieces of data to answer urgent pandemic related policy questions. It is not the basis from which to build a meaningful data strategy for the health and social care sector. It has been incredibly burdensome for providers to complete and there have been a range of other challenges, including[3]:

• The ‘relentlessness’ of responding to daily information submission requirements which absorbs significant valuable staff time
• Duplication of data requests by different commissioners who do not share information with each other or access the Tracker data properly which again absorbs valuable staff time
• Interpreting frequently changing requirements for data collection and communicating these changes to staff, service users and their families
• Receiving additional, frequent and unscheduled phone calls requesting the data already asked for in the Capacity Tracker.
• Little perceived benefit to sharing data, as it often did not result in any tangible advantage for providers

These pressures and challenges have been consistently echoed by National Care Forum (NCF) members (not for profit care providers) and we (representing both NCF and other care providers (e.g. the Care Provider Alliance) have played a pivotal role in giving voice to these issues.

A fundamental rethink of the aim and purpose of data collection is required if the DHSC is to build a coherent data strategy for health and care. The opportunity here is very real and exciting, but the key to success is to question and agree what purpose the data strategy is serving and therefore the minimum data needed for mutual benefit. Are we seeking to inform future national policy or local commissioning of health and social care? Are we using it to monitor services or for quality improvement purposes? How will these data impact quality of life and quality of care for those using care and support services? How will they ensure better partnership working across the health and social system? Whose data are they and what permission do we have to share with others?

The final data strategy must look beyond a centralised data collection for DHSC and ensure that those using care and support services also benefit. We also need to mindful of the different ‘data philosophies’ in the health and social care sectors. The sorts of data desired by NHS commissioners and clinicians will be very different to that desired by LA commissioners and the regulator which is again different to that desired by independent social care providers and by people using care and their families. We must ensure that meaningful data is captured that benefits all. Data burden must be balanced with data benefit and a clear indication of how the effort needed for data flows will be resourced. Ultimately it must add value not only to national and local policy makers, but also, to the people who use care and support services and those who provide it.

This highlights the importance of the NIHR funded DACHA study (http://dachastudy.com/), which seeks to develop, pilot and test a minimum data set for care homes and is therefore a timely and important part of the social care data landscape. DACHA will:

1. establish what data need to be in place to support research, service development and uptake of innovation in care homes and
2. synthesise existing evidence and data sources with care home generated resident data to deliver a minimum data set (MDS) that is usable and authoritative for different user groups (residents, relatives, business, practitioners, academics, regulators and commissioners).

It is vital that the DHSC’s final data strategy for health and care is informed by the emergent findings from the DACHA study. The social care sector agrees that more robust data collection and analysis is needed. However, we first need to build a shared view of what shared data matters to improve care delivery and create more evidence-informed procurement and commissioning practices. We need an approach which engages the whole sector, including those using care services now (both self-funders and publicly funded), and those who may need to use it in the future and their families. Decisions must be co-created with social care providers, as well as, users of care and support services. This is the welcome focus of the DACHA study, led by Professor Claire Goodman (University of Hertfordshire) in collaboration with the social care sector.

Co-authors

Liz Jones, Policy Director, National Care Forum

Julienne Meyer, Emeritus Professor of Nursing, R&D Advisor to the National Care Forum

Funding Acknowledgement and Disclaimer

This study/project is funded by the National Institute for Health 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.

 

[1] National Audit Office (2020) Readying the NHS and adult social care in England for COVID-19, The National Audit Office (NAO) External Relations , London (Available at: https://www.nao.org.uk/report/summary-of-uk-governments-response-to-the-covid-19-pandemic/)

[2] DHSC (2021) Working together to improve health and social care for all, Department of Health and social care, London (Available at: https://www.gov.uk/government/publications/working-together-to-improve-health-and-social-care-for-all