Social care data in the UK; current landscape, challenges, and future recommendations

Figures & data

Table 1. Source classification requirements.

Key data requirements	Beneficial data requirements
HCRU Social care admissions, referrals, or both Admission or referral to all care settings, e.g. hospital or primary care Length of social care use Service use post-hospital discharge Social care service type for all facets of HCRU Demographics Age, sex, ethnicity, geographic location Diagnosis Non-specific	Specific diagnosis Demographics (comorbidities) Post-hospital discharge home visits HCRU (by service) Linkable to other RWD sources
Key care settings	Beneficial care settings
Community care (Community) Nursing Day care Residential care Care homes Hospice care Nursing homes Residential homes Domiciliary care Health visiting teams Support workers Supported independent living	Community care Community palliative care Occupational Residential care Disability care Rehabilitation center Other social care services Community support Childcare Therapy

HCRU, health-care resource use; RWD, real-world data.

Figure 1. Source selection process. Initial desk research identified 24 sources, of which 14 were initially classified as high priority, 4 as low priority, and 6 excluded. Following discussion among the authors, among the 4 low-priority sources, 2 were upgraded to high priority and the remaining 2 were combined and considered a single high priority source. Another source (Kent Integrated Care) was identified and included by the authors after the initial desk research and was considered a high-priority source. Eighteen high-priority sources remained at the conclusion of this process.

CRIS, Clinical Record Interactive Search; FNP, Family Nurse Partnership; HES, Hospital Episode Statistics; NHS, National Health Service; PARIS, Patient-Reported Indicator Surveys.

Figure 2. (a) overview and (b) breakdown of sources.

CRIS, Clinical Record Interactive Search; CQC, Care Quality Commission; CSDS, Community Services Data Set; DaSH, Data Safe Haven; GGC, Greater Glasgow and Clyde; GNCR, Great North Care Record; HIC, Health Informatics Centre; HSC, Health and Social Care; KERNEL, Kent Research Network for Education and Learning; KID, Kent Integrated Dataset; LHCRE, Local Health and Care Record Exemplar; LSC, Lancashire and South Cumbria; NHAIS, National Health Application and Infrastructure Services; NWEH, NorthWest EHealth; SAIL, Secure Anonymised Information Linkage; SC, Social Care; SCHC, Scottish Care Home Census; SUS, Secondary Uses Service; TVS, Thames Valley and Surrey; WCR, Wessex Care Records.

Table 2. National level 1 (high potential) sources.

Data type	Data period	Data lag	Data access	Linkages	Social care settings	Datasets	Measurements	Value
Community Services Data Set A patient-level data set for all people who are in contact with NHS-funded Community Health Services. Data are collected from clinical systems, acute trusts, mental health trusts, community health-care trusts, care trusts, social enterprises, independent sector providers, and local authorities.
A+L	Oct 2017-	1–2 mo	Direct (internal)^a	NHS digital datasets likely	District nursing Community bed-based care Home-based care Health visiting Respite care Care contacts/activities that occurred due to referral	Care Activities Care Plans Coded Scored Assessments Demographics Diagnoses Group Sessions Vaccinations Referrals	Comprehensive demographics Diagnoses (ICD-10, Read code, SNOMED) Detailed service use and pathways Vaccination status and date Treatments, procedures Referrals (source, discharge to, reason)	All NHS funded community health services captured National, comparable, standardized data about Community Health Services that are being delivered Detailed reference cost information
Scottish Care Home Census A yearly census using data collection forms, covering all adult care homes in Scotland. Data are collected in two parts; part 1 contains aggregate-level for the care homes and Part 2 contains individual-level for long-term residents (those who intend on staying ≥6 weeks on admission). Data collected includes basic resource use.
C+CS	2003- (linkable from 2013)	Annual	Direct (external)^b,c	National datasets (via CHI number)	Personal care (Y/N) Nursing (Y/N) Nursing care (Y/N)	N/A	Admission and discharge pathway and reasons Basic demographics Detailed service use and costs for long-term residents Funding type Select diagnoses (e.g. dementia)	Detailed resource use and cost information for long-term residents Highly linkable to external datasets
Source Social Care A revised social care dataset based on routine collection that can be linked with routinely collected health data (e.g. acute, mental health, and geriatric long-stay hospital admissions, A&E attendances, hospital outpatient appointments, community prescribing, and community health). The linked dataset can provide the basis for analysis of HCRU and outcomes across social and health care from individual to national level. Includes all Scottish social care that is at least partially publicly funded. Reviewed in 2018 and aligned with the Scottish Government’s Social Care Survey, resulting in a single data source.
A+L	Social care from financial year 2017/2018	6–12 mo	Direct (external)^b	National datasets (via CHI number)	Alarms and telecare Care home District nursing Home care Self-directed support	GP out of hours Homelessness Hospital activity (in/outpatient, day cases, delayed discharges, A&E) National Records Scotland Deaths Primary care	Comprehensive demographics Costs captured in Self-directed support dataset Detailed service use Diagnosis, vaccination, and treatment through linkage to primary care records	Designed to provide the basis for analysis of HCRU and outcomes across social and health care from individual to national level The only national social care database collected by Public Health Scotland

A, administrative; A&E, accident and emergency; C, census; CHI, community health index; CS, cross-sectional; GP, general practitioner; HCRU, health-care resource use; L, longitudinal, mo, month; N/A, not applicable.

^aVia NHS Digital’s Data Access Request Service; a legal basis is required.

^bVia Electronic Data Research and Innovation Service; data must be stored/processed externally through a Safe Haven.

^cAnalysis of ‘stay-level’ outputs must be conducted in-house by Public Health Scotland (i.e. indirect).

Table 3. Regional level 1 (high potential) sources.

Data type	Data period	Data lag	Data access	Linkages	Social care settings	Datasets	Measurements	Value
Care City Cohort A linked dataset of routinely collected, retrospective, pseudonymized data for the population of the London Borough of Barking and Dagenham. The dataset contains detailed service use information from five settings of care (hospital, primary care, community care, mental health, and social care), from CCG, Council, NHS Trust, GP, and HES records. The cohort was established by a community interest company to study the benefits of community and social care in health care.
Co+L	2011- (Social care from 2014, community/mental care from 2016.	Annual	Direct (external)^a	N/A; already extensively linked	Weekly packages: Crisis intervention Home care Residential and nursing home Supported living All community and social care captured in CCG or NHS Trust data.	Barking and Dagenham or Havering CCG Council records GP HES NELFT (community services) NHS Trust	Comprehensive demographics Detailed service use and costs Vaccinations Prescriptions Primary diagnosis from hospital data Treatment	Extensively linked primary, secondary, and social care data Detailed resource use information with costs/tariffs recorded Is the most deprived borough of London, and one of the most deprived in England, with a young population Custodians are eager to collaborate and have pharmaceutical industry requirements shape the cohort direction
Discover-NOW Discover-NOW is a linked, longitudinal, costed, patient-level database and the NHS real-world evidence generation hub of the 7 Health Data Research Hubs. Discover-NOW specializes in conducting or facilitating clinical pathway mapping and decision making, and is tailored to population health and health resource use studies. Led by Imperial College, Discover-NOW provides access to one of the largest depersonalized linked data sets in Europe (2.5 million currently) and holds preconcerted databases for patient recruitment. Data are collected from NW London.
A+MR+L	1980- (Up to 40 years for some areas; social care from 2015)	Monthly^b	Direct (external)^c	Possible (already extensively internally linked)	Service type (e.g. care home, home care, residential, nursing, short and long stay) Social care package (costs, units, and units of measure) Provider of care (location, organization) All social care and community care settings captured.	Community Health GP (events and prescriptions) Hospital (outpatient, admitted patient care episode, A&E) Mental health Pathology Data	Comprehensive demographics Diagnosis (primary and secondary settings) Health-care resource use and costs captured Primary care prescriptions Treatments, procedures Vaccinations dataset	Population matches age-sex distribution of the UK and CPRD, but with more ethnic diversity Care organizations and postcodes identifiable, thus linkable to health-care provider variables and patient pathway derivable. Contains a consent-to-contact register for prospective studies
Kent Integrated Dataset KID is a historically linked dataset of patient-level records from multiple services, including general practices, hospitals, community health services and social care. KID is now closed to further data collection but is linkable to KERNEL, a new, larger dataset in creation that will allow re-identification of patients and external analytics. Coverage include Kent and Medway.
A+MR+L	2014–2019 (Social care data up to 2018)	N/A	Direct (internal)^d	Possible (already extensively linked)	Domiciliary care Help at Home Nursing care	Community health services (NHS Foundation Trust) Mental Health Primary care (GP) Population register Social care (Kent County Council) Secondary care (Acute NHS Trusts)	Admissions, procedures Comprehensive demographics Detailed service use, costs, and pathways Diagnosis (ICD-10), diagnostic tests, and results Prescriptions Risk factors (e.g. alcohol) Vaccinations	Extensively linked primary, secondary, and social care data. Dataset is well situated for costs and morbidity groups Linkable to KERNEL, which will contain more recent data

A, administrative; A&E, accident and emergency; CCG, clinical commissioning group; Co, cohort; CPRD, clinical practice research datalink; CS, cross-sectional; GP, general practitioner; HES, hospital episode statistics; HCRU, health-care resource use; KERNEL, Kent Research Network for Education and Learning; KID, Kent Integrated Dataset; L, longitudinal, mo, month; MR, medical record; N/A, not applicable, NELFT, North East London NHS Foundation Trust.

^aResearch purpose must be in line with values and purposes of this cohort; data must be stored/processed externally through a Safe Haven.

^bSocial care updated monthly, vaccination daily.

^cData must be stored/processed externally through the Trusted Research Environment since late 2021 (previously indirect access only).

^dData can be stored/processed on researchers’ own environment (i.e. internal) or through an external secure environment.

Table 4. Barriers and challenges of high-potential sources.

Barrier or challenge	Data sources affected	Details
Data access	Discover-NOW	Indirect access through Discover-NOW team only; looking to allow direct access through Trusted Research Environments
	Care City Cohort	Direct access through data safe haven only; studies must have public benefit for population of Barking and Dagenham specifically
	Kent Integrated Dataset	Direct access through secure environment or researcher’s own environment; lawful basis required with public benefit
	Source Social Care	Indirect access through Source Social Care team or directly via data safe haven
	Community Services Data Set	Direct access through NHS Digital’s Data Access Request Service; requires data governance standard to be met and a legal basis for processing; previous releases were for councils, academia, and health informatics companies
	Scottish Care Home Census	Direct access through data safe haven only; application via Electronic Data Research and Innovation Service; requires approval from the Public Benefit and Privacy Panel.
Linkage to health data	Scottish Care Home Census	No routine linkage
	Source Social Care
	Discover-NOW
	Kent Integrated Dataset	Linkage not yet established (Kent Research Network for Education and Learning has plans to link to data from NHS Digital)
	Care City Cohort	External linkage not possible (already well linked internally)
Limited published research	Community Services Data Set	N/A
	Discover-NOW
Incomplete data capture	Kent Integrated Dataset	Social care data capture ended in 2018; Kent Research Network for Education and Learning to integrate social care data from 2022)
	Scottish Care Home Census	Data on short-term patients available at aggregated level only
Limit score of data captured	Scottish Care Home Census	Data collected for adult care homes only
Data quality issues	Source Social Care	Patients can be lost to follow-up; extensive missing/unknown data

N/A, not applicable.

The barriers and challenges identified may also affect other data sources not shown here. It is possible that a given barrier or challenge affects different sources to different degrees, and the information provided herein was dependent on the volume and quality of information provided by data custodians. For example, more sources may have incomplete data capture (beyond the Kent Integrated Dataset and Scottish Care Home Census), but this was not identified as a key barrier or challenge during data custodian discussions.