The invisibility of the UK care home population – UK care homes and a minimum dataset
Jenni Burton, Claire Goodman, Terry Quinn
14 May 2020
While we cannot roll back the clock, it is worth pondering what could have been possible if a UK Care Home Minimum DataSet (MDS) had been in widespread use. We would know the core fundamentals – how many residents, live in how many care homes, across which sectors, in which regions. We would understand the health and social care needs of the adult care home population and we would understand usual care home mortality. Early signs of non-specific presentations of COVID-19 would have been recognised and associated features of delirium, falls, anorexia identified early. Data at care home level could have been used to understand the dynamics of the care home – new arrivals from the community or hospital; visits to A&E; returning residents after inpatient stays – this natural epidemiology could have been studied in context, generating evidence to support practice. A UK care home minimum dataset will never replace stories from the frontline about the compassionate person-centred care which takes place up and down the country, every day. It would, however, have supplied the numbers to have supported a more intelligence-led, co-ordinated response and could have been a tool for generating evidence and developing best practice in this new world.
If you don’t understand a population how can you possibly succeed in anticipating and responding to their needs? Sadly, this feels to be at the root of the national failures to adequately support UK care homes in response to the challenges of the Covid-19 pandemic. There is a gap between what care home providers, managers and staff know are the needs of their residents and politicians, policymakers and NHS staff, recognise is needed to support the sector. The issue is compounded by fragmentation of information, cross-sectoral data-sharing restrictions and a lack of sustained national investment, particularly with respect to digital technologies. In this blog UK researchers involved in the DACHA study (developing research resources and minimum dataset for care homes’ adoption and use) (@DACHA_study) discuss how the situation may have been different and how they are hoping to facilitate positive change.
As has been highlighted in the international data profiles shared on the LTC Covid website,(1) defining the model of care provided within a long-term care setting is fundamental in understanding the population and how they are supported. In the UK, the majority of care homes are independently owned by care home providers in the private and not-for-profit sectors.(2, 3) UK care homes provide social care, first and foremost, rather than the medicalised models seen in the Netherlands and USA. As a consequence, the provision of healthcare for residents requires interactions with the NHS, a fully-state-funded system of health provision. The majority of healthcare is provided by General Practitioners (GPs) and community healthcare teams, including district nurses, community therapists and pharmacies. Access to these services is variable, both in terms of range and frequency of available input.(2) There is no shortage of data about care home residents held by the NHS and social care.
Data and UK Care Homes
Care homes collect and use data every day on the care needs, health and wellbeing of their residents and for their own quality and regulatory purposes. They are not collated and published. These are in varied paper and electronic formats, with an array of electronic-data collection systems in use. Primary and secondary care hold and collect data on care home residents, but these are remote from the homes and inaccessible to the staff providing care. NHS data systems poorly identify care home residency,(4) as recording of residency, a fundamental characteristic, is not standardised. This issue can be overcome by utilisation of algorithms and data intelligence,(5, 6) but these systems are not in routine use across NHS hospitals to pool useful data quickly. The data which would be needed to look at applied, everyday questions such as prescribing data, at the care home level, are not easily obtained for evaluation or research purposes.
Care homes also collect and report large volumes of data on their residents, their care processes and organisational structures. Data collected includes established mandatory reporting of outbreaks and of the death of their residents to the regulatory bodies.(7, 8) Never before have these been requested and certainly not at the pace and scale required to inform the dynamic situation we find ourselves in.
Considerable investment of time and skill is required when repurposing routinely collected data, particularly from social care sources, to ensure meaning and salience is retained.(9, 10) Use of routine data for health and care analytics work has huge potential for benefit to individuals.(11) While significant advances have been made using health data sources, social care data has remained underutilised and poorly understood in comparison, with the pandemic exposing this more than ever before.(12) This perpetuates the invisibility of the care home population and fails to make effective use of an inobtrusive method of quantifying need, identifying and describing variation and characterising this complex and vast population.
Scotland does have national level social care data, with an annual Care Home Census and a Social Care Survey.(13) The Scottish Care Home Census is a collaborative data collection exercise, run by the regulator (The Care Inspectorate) in conjunction with the Scottish Government Health and Social Care Analysis Team and analysed by the National Statistics Provider, Information Services Division a branch of the NHS National Services for Scotland.(14) Critically, the data are collected by the care homes about their long-stay residents (>6 weeks) and aim to capture the experiences of care throughout the year. The information contained within the Census data is a useful foundation platform, which has been under-utilised to-date.(3) These have allowed a more informed appreciation of the scale of the sector, but dynamic real-time information to support a data intelligence response have not been forthcoming. The most robust data which have been collated are those produced by National Records for Scotland (NRS) on death certification data, which identify deaths in a care home setting and have been produced on a weekly basis since 15th April.(15)
Minimum dataset (MDS)
Internationally, the concept of a minimum dataset is well-established. Yet attempts to introduce this to the UK have proved unsuccessful. Where minimum data sets (MDS) have been adopted research has demonstrated their value to commissioners, researchers and service providers in enabling identification of care needs and residents at risk of ill health.(16-20) They provide a comprehensive account of resident characteristics, resource use, and care outcomes in key areas (e.g. activities of daily living, cognitive performance, pain, cost of care, and infection).(21) What is less clear is how their use affects the everyday work and care practices of care home staff and how the different priorities of social care providers, residents and family members, clinicians and commissioner are met. Nor is it known how staff or residents themselves act on resident data for the delivery of personalised day to day care.(22-24) In countries where MDS are routinely completed how and if the data have informed pandemic planning and response needs to be reviewed.
In November 2019 the DACHA Project was launched. Funded by the National Institute for Health Research (NIHR), DACHA (developing research resources and minimum dataset for care homes’ adoption and use)(25) was formed by a collaboration of care home researchers, care home organisations and providers and NHS practitioners. The overarching aims of DACHA are: to establish what data need to be in place to support research, service development and uptake of innovation in care homes and to 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). The project is facilitated by robust stakeholder engagement and involvement of residents, relatives, staff and care home providers. By working closely with resident representatives, the care home industry, NHS England, Local Authorities, commissioners and the regulator this study addresses policy objectives of integrated care for this group with a paradigm shift towards individual and care home level information being routinely shared and used to underpin research, innovation and intervention. When funding was confirmed we were unsure how much discussion and persuasion different organisations would need to recognise the value of the project. The pandemic, sadly, has done some of that work for us. The imperative to work together and standardise data is widely understood.
Critical to the success of any UK Care Home MDS will be its feasibility and acceptability within the UK context. This includes addressing questions around access to digital technologies; data security; safeguarding privacy in a setting where individuals may lack capacity to consent to data sharing; capacity for integration of information across the primary, secondary and community health and care sectors and utility for improvement. Much of the data collected about care home residents focuses on health parameters and metrics focused around the needs of the NHS, e.g. unscheduled care utilisation. A UK MDS has potential to include measures which value the social care contribution which supports residents, allowing them to live and thrive, such as the ASCOT (Adult Social Care Outcome Tool).(26) The UK care home landscape is complex and has received inadequate public and political attention and consequently funding. Data alone will not resolve all of these issues, but, an MDS designed together and managed with appropriate safeguards could help bring visibility to those living and working in care homes which is much overdue.
DACHA Study Research Management Team
University of Hertfordshire: Professor Claire Goodman, Dr Gizdem Akdur, Lisa Irvine, Massirfufulay Musa
University of Cambridge: Dr Sarah Kelly, Andy Cowan
University of East Anglia: Dr Guy Peryer, Dr Anne Killett, Priti Biswas, Jessica Blake
University of Exeter: Dr Iain Lang
University of Glasgow: Dr Jenni Burton
University of Kent: Ann-Marie Towers
University of Leeds: Professor Karen Spilsbury
Newcastle University: Professor Barbara Hanratty
University of Nottingham: Professor Adam Gordon
National Care Forum: Professor Julienne Meyer, Liz Jones
The Health Foundation: Arne Wolters
PPI Representative/Alzheimer’s Society Research Network Volunteer: Sue Fortescue
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.
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