Responses to 1.08. Information and monitoring systems 


The Department of Health facilitates an Australian National Notifiable Diseases Surveillance System, which tracks a list of specific communicable diseases. The Department of Health also publishes weekly traffic light reports of the COVID-19 situation across Australia, which includes details about cases, testing, and capacity nationwide and in individual states (source:

Last updated: August 5th, 2021


The portal was launched in 2003 as a partnership between the Ministry of Health, the five administrative regions and municipalities, this platform integrates information from 85 different sources and aims to improve communication between patients and the health systems enabling beneficiaries to access their medical records. Beneficiaries can consult laboratory results, prescription information and scheduled visits and enter or complement data on patient-reported outcomes. Hospitals share discharge summaries and outpatient notes, laboratory work, and medical imaging results with other hospitals, general practitioners and other medical specialists. A national medication database includes data on dispensed products in public and private (non-hospital) pharmacies (source:

Last updated: August 5th, 2021

England (UK)

There is no national minimum dataset for care homes, or social care in England (source: UK Report).During the pandemic, the limited existing data was supplemented by data collections from several bodies (the NHS, providers themselves, the death registration system, Public Health England, and the regulator, CQC). Those working in the sector report that this has led to repeated collection of similar data, by multiple stakeholders. This reflects the lack of data and technology infrastructure in the social care sector, which by comparison with the health care sector in England and Wales, has received little investment.

The COVID-19 crisis has stimulated some technological innovation in care homes; for example, the NHS has expanded the use of encrypted NHS email to care home staff, developed a web portal for Personal Protection Equipment (PPE) emergency procurement, and has piloted ‘remote’ social care interventions. Some care homes and General Practices (GP) have also used tablets and video calling to allow GP visits and to communicate with families. However, this is in the context of fundamental issues with capacity of the care home sector to engage in these initiatives due to a lack of infrastructure (e.g. broadband), or low usage of digital technology among home care staff.

At a provider and individual level, data and information sharing are limited. There have been several successful partnerships between the health and local authority sector across England to link social care data collected by councils with health care data. However, this only covers people whose social care provision is provided by local authorities, not those who pay themselves. There are no national datasets on social care utilisation or individual expenditure and the complex and fragmented nature of the provider market makes data collection difficult. The development of the Capacity Tracker (source: About Capacity Tracker – NECS ( for care homes, mandated during Covid-19, is a welcome addition with potential to provide market intelligence, although there are concerns about the accuracy of data entered, with implications for planning and prioritisation in central government (source:  Covid story_v5.docx ( It remains impossible to obtain an accurate estimate of the number of self-funders or total social care spend across all care settings (source: Adult social care statistics: the potential for change | The Nuffield Trust).

Last updated: August 5th, 2021


There are limited information systems at a national level. The regional administrations (ARS) have some level of information collecting. There have been efforts to transfer the recording of deaths away from paper records to a secure app available to doctors (source:

Last updated: August 5th, 2021


Reports show that the health and long-term care insurance funds collect data on clients’ service use. Some of the information can be accessed (anonymised) for research purposes.

Last updated: August 5th, 2021


The National Insurance Institute publishes annual reports and regular studies on LTC resource allocation and service outcomes. Information on vulnerable and older adult populations in need of care services is also gathered through various social policy think tanks and NGOs: JDC (Joint Distribution Committee)-Eshel (source:, which conducts an extensive study of care users and produces annual reports on the aging and uses its evaluations of resource allocation and services in partnership with the Israeli government (source: MJB-Facts_and_Figures_Elderly-65_in_Israel-2018_English.pdf (  JDC-Eshel in partnership with Mashav produce an annual statistical yearbook of Israel’s aging and care user populations (source:

Last updated: August 5th, 2021


Italy has a comprehensive information and monitoring system (National Healthcare Information System) – using 130 indicators and covering population health status, budgetary and economic efficiency, organisation climate and staff satisfaction, patient satisfaction, performance indicators (appropriateness, quality) and effectiveness in reaching regional targets. Several regions have adopted the system (Source: update_joint-report_it_en.pdf (

Last updated: August 5th, 2021


As almost all people in need of care go through the municipality-funded needs assessment process to qualify for care, there is good data available on numbers of service users that is used to inform policy and reviews of care benefits by Ministry of Health, Labour & Welfare. It’s not clear whether the data is used for evaluation (source:

Last updated: August 5th, 2021


Sweden overall has extensive information management and statistics systems on health and social care, data is provided at county/ region and municipal level and compiled by the Swedish Association of Local Authorities and Regions together with the National Board of Health and Welfare (source: joint-report_se_en_2.pdf (

Last updated: August 5th, 2021

United States

While states differ in their collection of data, federal evaluations of LTC services and needs use the Center for Disease Control’s (CDC) recently renamed National Post-Acute and Long-Term Care Studies (NPALS). Information and statistics on adult day centre services and participants as well as residential care communities can be accessed dating back to 2012 on the CDC website (source:

Last updated: August 5th, 2021