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, Patel D, 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.
Data availability presented a key challenge in managing pandemic, for example, lack of baseline data made it difficult to calculate excess staffing needs and costs during COVID-19 (source: https://news.gov.bc.ca/files/1.25.2021_LTC_COVID-19_Response_Review.pdf).
Last updated: February 11th, 2022
The sundhed.dk portal was launched in 2003 as a partnership between the Ministry of Health, five administrative regions and municipalities. The platform gathers information from 85 sources to enable individuals to access their medical records such as laboratory results, prescription information and scheduled visits, individuals can also enter or complement data on patient-reported outcomes. Hospitals share various information including discharge summaries and outpatient notes, and medical results with other hospitals, general practitioners and other specialists (WHO, 2019).
WHO (2019), ‘Denmark: Country case study on the integrated delivery of long-term care’. Accessed at: https://www.euro.who.int/2019/denmark-country-case-study-on-the-integrated-delivery-of-long-term-care-2019).
Last updated: February 1st, 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
Data collected by Long-Term Care Insurance Funds
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 (Wissenschaftliche Institut der AOK, 2022).
Wissenschaftliches Insitut der AOK (2022) Publikationsdatenbank. Available at: Publikationsdatenbank | WIdO – Wissenschaftliches Institut der AOK (Accessed: 31 January 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 (European Commission, 2016).
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 (Ministerio della Salute, 2021). The status of LTC information system is poor (particularly compared to heathcare), which led to negative consequences during the Covid-19 outbreak. As of November, 2021 there was no official data on the pandemic outbreak in LTC services (Notarnicola et al., 2021).
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. Retrieved from: update_joint-report_it_en.pdf (europa.eu)
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. Retrieved from: C_17_pubblicazioni_3111_allegato.pdf (salute.gov.it)
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: February 4th, 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: February 10th, 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: 2021: Ageing policies – access to services in different EU Member States).
Sweden has extensive information management system which captures comprehensive health and care data. Data is provided at regional and municipal level, and compiled by the Swedish Association of Local Authorities and Regions and The National Board of Health and Welfare (source: European Commission Report).
Last updated: February 10th, 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 (Digital Lifeline Fund, 2021)
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 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: LaingBuisson). 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).
Digital Lifeline Fund, (2021). DCMS Digital Lifeline Fund: Interim Report
Burton, J., Goodman, C., Quinn, T. (2020). The invisibility of the UK care home population – UK care homes and a minimum dataset. LTCcovid.org
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: February 11th, 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 firstname.lastname@example.org
Elisa Aguzzoli, Liat Ayalon, David Bell, Shuli Brammli-Greenberg, Erica Breuer, Jorge Browne Salas, Jenni Burton, William Byrd, Sara Charlesworth, Adelina Comas-Herrera, Natasha Curry, Gemma Drou, Stefanie Ettelt, Maria-Aurora Fenech, Thomas Fischer, Nerina Girasol, Chris Hatton, Kerstin Hämel, Nina Hemmings, David Henderson, Kathryn Hinsliff-Smith, Iva Holmerova, Stefania Ilinca, Hongsoo Kim, Margrieta Langins, Shoshana Lauter, Kai Leichsenring, Elizabeth Lemmon, Klara Lorenz-Dant, Lee-Fay Low, Joanna Marczak, Elisabetta Notarnicola, Cian O’Donovan, Camille Oung, Disha Patel, Martina Paulikova, Eleonora Perobelli, Daisy Pharoah, Stacey Rand, Tine Rostgaard, Olafur H. Samuelsson, Maximilien Salcher-Konrad, Benjamin Schlaepfer, Cheng Shi, Cassandra Simmons, Andrea E. Schmidt, Agnieszka Sowa-Kofta, Wendy Taylor, Thordis Hulda Tomasdottir, Sharona Tsadok-Rosenbluth, Sara Ulla Diez, Lisa van Tol, Patrick Alexander Wachholz, Jae Yoon Yi, 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.