Care Home Data Review - Full Report

Introduction and Background

Care home provision in Scotland

On 31 March 2024, there were just over 1,000 care homes for adults in Scotland, caring for around 34,000 residents^[1]. Care homes are an integral part of social care and support services, and also to our communities. Care homes provide 24-hour care and support for people with a range of (often complex) needs, including (for example) older adults, people with learning disabilities, people needing care and support for mental health reasons, and people with physical and sensory impairment. Care homes provide a home, nursing care, personal care, and/or personal support to adults who are unable to live independently. The vast majority of residents are long stay, but care homes also provide care and support for respite, intermediate care^[i], step-up and step-down services^[ii]. A small number of care homes provide Hospital Based Complex Clinical Care. These range from designated units within larger care homes which have NHS medical staff input through to specific care homes run by NHS providers^[2].

Around 50,000 people^[iii] were employed in care homes for adults as at the end of 2022, with the majority being employed by the private sector. Around three quarters of the care home workforce were employed in frontline care roles. The majority of the care home workforce were on permanent contracts. There were estimated to be just over 3,600 nurses employed by care homes for adults. Just under three-quarters of all adult care home staff have been retained in the same service and post type since the previous year (2022)^[3].

On 31 March 2024, the majority (65%) of care homes were run by the private sector, but care homes were also run by the public sector (Local Authority, NHS Board), and the voluntary / not for profit sector. The cost of a care home place can be funded by a resident themselves (self-funders), or following an assessment, the resident can be partially or fully publicly funded. On 31 March 2024, where data were available, approximately 64% of all long stay residents in care homes for older people in Scotland were fully or mainly publicly funded and 36% were fully or mainly self-funded.^[4] Personal care and nursing care are free to anyone who has been assessed as needing them by the Local Authority.

Care home data challenges

The 1,000 plus care homes in Scotland use a wide range of systems and processes to generate, capture and record data, from paper based records to a variety of different electronic Management Information Systems (MIS). In addition, there are a number of local and national organisations collecting care home data, for many different purposes including statutory functions, administrative functions as well as analysing and publishing care home data. In many cases the data collected by the different data producers can be very similar and often overlap. Data producers use a variety of systems and processes to capture data and there can be differences in the data definitions used and the timeliness of data collected across organisations. Furthermore, the large number of data controllers, collecting data for multiple purposes, means that the information governance around any potential data sharing is complex.

Data / Statistics Producer: In this report, these terms refer to the organisations responsible for collecting and / or publishing national level statistics on care homes (e.g. Scottish Government, Public Health Scotland, Care Inspectorate).

Data / Statistics Providers: In this report, these terms refer to the organisations that provide data to the data / statistics producers (e.g. Care Homes, Local Authorities, Health & Social Care Partnerships (HSCPs))

Data controller: The natural or legal person, public authority, agency or other body which, alone or jointly with others, determines the purposes and means of the processing of personal data. (Source: Information Commissioner’s Office)

This fragmented data landscape, with a multitude of data systems, processes, definitions and collections, along with limited data sharing, has led to significant burden on data providers and a confusing data landscape. Whilst current data collections meet some of the purposes for which they were established, despite the large volume of data collected, the current data landscape does not fully provide the timely and insightful data for all purposes required.

Vision for care home data

Working in partnership across the care home sector and care home analytical community, to achieve meaningful, timely, data and analysis to support positive outcomes for care home residents and workforce.

Aims of the review

The Care Home Data Review (CHDR) is multi-agency (Scottish Government, Public Health Scotland, and Care Inspectorate) review of the national data landscape relating to care homes for adults. It aims to ensure a coherent suite of data collections, reduce the burden on data providers and meet the existing and emerging needs of data users.

Key elements of the project are to:

• Review the care home data landscape and consider improvements to the content, quality and frequency of current data collections to ensure stakeholder needs are met as comprehensively and efficiently as possible. This will include considering alternative methods of data collection and areas for data rationalisation.
• Consider the asks of data providers (what, how & when) to ensure we both maximise the benefits of data provision and balance the need for evidence with respondent burden.
• Identify and prioritise actions to address any key gaps in care home data.
• Consider the current analytical insight about, and for, the care home sector and how this can be improved.
• Consider information governance issues and ethical review processes for care home data and propose solutions to address gaps and inefficiencies.

In addition, the review will consider how best to ensure data gathering is flexible enough to meet emerging data requirements and recommend a process to ensure any new data requirements are considered at a strategic level and met in an appropriate way.

The review provides both an important stock-take as we move towards the National Care Service (NCS) and supports us to meet the recommendations set-out in the Independent Review of Adult Social Care, the Health and Social Care Data Strategy and also in the report on Adult Social Care Statistics by the Office for Statistics Regulation (OSR).

By its nature, this review is focussed on the issues and challenges of the current care home data landscape. There have been a number of improvements made to address some of the points highlighted in the OSR report. This review considers how organisations involved in care home reporting can work together to address the issues that remain. In addition, throughout the course of the review, we have also seen examples of good practice and innovative solutions at local and national level and some of these examples have been highlighted in the report.

Project scope

This project focuses on national data collections and outputs relating to care homes and will form one strand that feeds into a wider review of social care data, analytical requirements and products/outputs. Specifically, this review covers:

• All nationally collected data (published & unpublished), including administrative data and management information, relating to care homes.
• Data quality, coherence and completeness across all data sources to highlight areas for potential rationalisation.
• Establishing current and emerging data requirements and evidence gaps, including those due to data quality issues.
• Consideration of alternative sources of information, methods of collection and the potential for reusing data already available.

Data used for the daily operational needs for the running of care homes and internal care home reports are out of the scope of the review. However, whilst the review covers only national care home data collections, it will take account of, and may impact on, how data are collected and used locally.

This review is about understanding people’s experiences of providing or using nationally collected data about Scotland’s care homes and care home residents. For simplicity in the report, we often refer to ‘care home data’ instead of stating ‘data about Scotland’s care homes / care home residents’ each time.

Delivery partners for review

Scottish Government (SG), Public Health Scotland (PHS) and Care Inspectorate (CI) have collectively undertaken this review as all organisations are responsible for the suite of national care home data collections. This approach has enabled consideration of care home data as a whole, rather than focussing on certain data products / collections in isolation. The review aims to bring all data producers together to work to improve data quality & coherence, and address data gaps, across the whole data landscape.

Having all organisations involved in this review has also enabled us to pool resources and expertise to propose solutions which aim to benefit the whole care home data landscape.

For this review to ultimately lead to improvements in care home data, it will take a collective effort across the care home data and analytical community. Care homes, local authorities, Health & Social Care Partnerships, and NHS Boards, as data providers (and sometimes data producers at a local level) will all bring expertise and have an essential role in helping shape care home data in the future. The many data users - including care home residents and their families, the care home workforce, and the care home sector - will also bring expertise and have a pivotal role in maximising data to ultimately provide better insight and evidence to benefit care homes, residents and the care home workforce.

Key stages & outputs from review

(i) Mapping of the data landscape

In order to understand the current data landscape, a compilation of all the national data sources and definitions relating to care homes has been produced. The mapping covers mandatory data captured by the sector’s regulators, administrative data as well as both official statistics and management information. The data mapping increases the transparency around the data collected and its usage. It also allows us to identify similarities and overlaps between data collections, which can both help facilitate rationalisation between collections and inform work on producing standardised data definitions. The mapping is published on the Care Home Data Review webpage.

(ii) Stakeholder Engagement & Literature Review

Discussions have been held with a wide range of stakeholders asking for their views about care home data. This includes meetings with individual organisations and attending existing stakeholder group meetings. In March 2023, we held a Care Home Data Review workshop which had over 100 participants from a range of care home data providers and users.

Care home data providers and users were also invited to respond to an online questionnaire regarding their experiences of providing and/or using care home data.

Further details on the stakeholder engagement are available on the Care Home Data Review webpage.

In addition to gathering the views of stakeholders, the Review has also drawn on published literature as part of the evidence gathering. This includes articles in academic journals, publications from public bodies (e.g. Audit Scotland), and publications from the social care sector (e.g. Scottish Care).

(iii) Report of Recommended Actions

This report is the main output from the first phase of the review. The report is structured around the key topics which have emerged from the review. Within each topic, there is a summary of the evidence, case studies (some demonstrate positive examples whilst some demonstrate current challenges), and finally, the desired outcomes from any improvements and the recommended actions needed to bring about these outcomes.

The recommendations range from those that could be achieved in the short term to medium term, for example the setting up of data provider/user networks and increasing the transparency of data collections, to more complicated but impactful actions likely to take a number of years to complete, for example potentially establishing a core minimum dataset for care home data.

Next steps

This report represents only the end of the first phase of the review. It is acknowledged that many of the themes identified in the review are not new and throughout the review, stakeholders expressed frustration with the perceived lack of progress in either making, or producing a co-ordinated plan to take forward, substantive improvements for both data users and providers.

It is also recognised that some of the recommendations from the review may lead to fundamental changes to the way that data are collected, shared, communicated and used across the sector. Implementing these recommendations will require a phased programme of work and will require the input and help of all organisations involved in providing/producing care home data to lead on taking forward the various work strands from the review.

A number of the recommendations from the review are likely to require significant resource to implement, with some sequencing required due to the interdependence between recommendations. With resources limited by existing work pressures, taking forward the next stages of the review will require prioritisation of the recommendations and consideration of how best to free up resource to focus on data and process development.

For the next phase of the review, we have set up a Care Home Data (CHD) Working Group. The Working Group has representatives from a wider range of stakeholders across the sector. The group will be responsible for prioritising the recommendations from the review and developing a phased programme of work for implementation. This will help ensure that we can embed joint priorities across organisations to improve the care home data landscape. It is anticipated that a number of Short Life Working Groups will be set up to take forward the various work strands of the review.

Future updates

Information relating to the Care Home Data Review and subsequent programmes of work can be found on the Care Home Data Review webpage, or requested by emailing SWStat@gov.scot.