LTCcovid Country Profiles

Responses to 1.07. Information and monitoring systems 

The LTCcovid International Living report is a “wiki-style” report addressing 68 questions on characteristics of Long-Term Care (LTC) systems, impacts of COVID-19 on LTC, measures adopted to mitigate these impacts and new reforms countries are adopting to address structural problems in LTC systems and to improved preparedness for future events. It is compiled and updated voluntarily by experts on LTC all over the world. Members of the Social Care COVID-19 Resilience and Recovery project are moderating the entries and editing as needed.

The report can be read by question/topic (below) or by country: COVID-19 and Long-Term Care country profiles.

To cite this report (please note the date in which it was consulted as the contents changes over time):

Comas-Herrera A, Marczak J, Byrd W, Lorenz-Dant K, Pharoah D (eds.) and LTCcovid contributors. LTCcovid International living report on COVID-19 and Long-Term Care. LTCcovid, Care Policy & Evaluation Centre, London School of Economics and Political Science. https://doi.org/10.21953/lse.mlre15e0u6s6

Copyright is with the LTCCovid and Care Policy and Evaluation Centre, LSE.

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 (sources: Department of Health 1Department of Health 2).

Last updated: January 6th, 2022


The sundhed.dk 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: https://www.euro.who.int/en/health-topics/Life-stages/healthy-ageing/publications/2019/denmark-country-case-study-on-the-integrated-delivery-of-long-term-care-2019).

Last updated: January 6th, 2022


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: https://www2.assemblee-nationale.fr/static/15/pdf/rapport/i3633.pdf).

Last updated: January 6th, 2022


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: January 6th, 2022


The Israeli National Insurance (IN) publishes annual reports and regular studies on community-based 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: The Joint), which conducts an extensive study of care users and produces annual reports on aging. The evaluations of resource allocation and services are shared with the Israeli Government (source: Myers-JDC-Brookdale Institute.  JDC-Eshel in partnership with Mashav produce an annual statistical yearbook of Israel’s aging and care user populations (source: Myers-JDC-Brookdale Institute).

Last updated: January 6th, 2022


For healthcare, Italy has a comprehensive information and monitoring system (National Healthcare Information System) 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.

Out of the 33 indicators that monitor and assess regions’ health and LTC systems’ quality, there are only three LTC-related measures: number of care home beds and residents, number of hours of home care delivered and day care centres. Hence, the current status of LTC information system is really poor, compared to heathcare, and this led to critical consequences during the Covid-19 outbreak. As of November, 2021 we still lack official data on the pandemic outbreak in LTC services.

Sources:

European Commission (2016) Italy – Health Care & Long-Term Care Systems. Excerpt from Joint Report on Health Care and Long-Term Care Systems & Fiscal Sustainability. Institutional Paper 37, volume 2, country documents. Economic and Financial Affairs, Economic Policy Committee.

Ministerio della Salute (2021) Monitoraggio di LEA attraverso la cd. Grillia LEA. Metodologia e Risultati dell’anno 2019. Direzione Generale della Programmazione Sanitaria – Ufficio VI.

Notarnicola, E., Perobelli, E., Rotolo, A., & Berloto, S. (2021). Lessons Learned from Italian Nursing Homes during the COVID-19 Outbreak: A Tale of Long-Term Care Fragility and Policy Failure. Journal of Long-term Care, (2021), 221–229. DOI: http://doi.org/10.31389/jltc.73

Last updated: January 6th, 2022


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: https://www.mhlw.go.jp/english/policy/care-welfare/care-welfare-elderly/dl/ltcisj_e.pdf).

Last updated: January 6th, 2022


The Law on Older Persons, introduced in 2015, requires that the Council of Ministers of the Republic of Poland must provide annual information on the situation of older people (60+) regarding, among other things,  their health status, access to healthcare and long-term care services. The report also contains information about the implementation of the tasks of local governments in providing support for older people. The information is publicly available on the website of the Ministry of Family and Social Policy and the Central Statistical Office (source: Ageing policies – access to services in different EU Member States).

Last updated: January 6th, 2022   Contributors: Joanna Marczak  |  Agnieszka Sowa-Kofta  |  


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: January 6th, 2022


There is no national minimum dataset for care homes, or social care in England. 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 Care Quality Commission (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 emails 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. The digital lifeline initiative during the COVID-19 crisis enabled over 5,000 adults with intellectual disabilities in England to receive internet-enabled devices, with data and local support to help people learn how to use their device, with promising impact in the short term. 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 (necsu.nhs.uk) 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 (laingbuisson.com). 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).

Source:

https://ltccovid.org/2020/05/14/the-invisibility-of-the-uk-care-home-population-uk-care-homes-and-a-minimum-dataset/

Last updated: January 6th, 2022   Contributors: Chris Hatton  |  Nina Hemmings  |  


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: https://www.cdc.gov/nchs/npals/reports.htm).

Last updated: January 6th, 2022


Contributors to the LTCcovid Living International Report, so far:

this list is regularly updated to reflect contributions to the report, if you’d like to contribute please email a.comas@lse.ac.uk

Elisa Aguzzoli, Liat Ayalon, David Bell, Shuli Brammli-Greenberg, Jorge Browne Salas, Jenni Burton, William Byrd, Sara CharlesworthAdelina Comas-Herrera, Natasha Curry, Gemma Drou, Stefanie Ettelt, Maria-Aurora Fenech, Thomas Fischer, Nerina Girasol, Chris Hatton, Kerstin HämelNina Hemmings, David Henderson, Stefania Ilinca, Margrieta Langins, Shoshana Lauter, Kai Leichsenring, Elizabeth Lemmon, Klara Lorenz-Dant, Lee-Fay Low, Joanna Marczak, Elisabetta Notarnicola, Cian O’DonovanCamille Oung, Disha Patel, Eleonora Perobelli, Daisy Pharoah, Stacey Rand, Tine Rostgaard, Olafur H. Samuelsson, Maximilien Salcher-Konrad, Benjamin Schlaepfer, Cheng Shi, Cassandra Simmons, Andrea E. SchmidtAgnieszka Sowa-Kofta, Wendy Taylor, Thordis Hulda Tomasdottir, Sharona Tsadok-Rosenbluth, Sara Ulla Diez, Lisa van Tol, Patrick Alexander Wachholz, Jessica J. Yu

This report has built on previous LTCcovid country reports and is supported by the Social Care COVID-19 Resilience and Recovery project, which is funded by the National Institute for Health Research (NIHR) Policy Research Programme (NIHR202333) and by the International Long-Term Care Policy Network and the Care Policy and Evaluation Centre at the London School of Economics and Political Science. The views expressed in this publication are those of the author(s) and not necessarily those of the funders.