LTCcovid Country Profiles
Responses to 4.03. Reforms to develop or improve Long-Term Care data and information 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.
As part of the reforms following the Segur de la sante, 2 billion euros have been invested into digital infrastructure, including 600 million euros for care and nursing homes. These investments will enable the creation of an online health and care portal including a shared health and care records, shared messaging system, records and information relative to hospital discharge, etc. (l’Espace numerique de sante).
Funding for digital and technical innovations
The LTC insurance funds can provide home care and residential care providers between 2019 and 2021 with partial funding (up to €12,000) to support the purchasing of technical tools aimed at improving working conditions and reducing bureaucratic load (European Commission; 2021; Bundesministerium für Gesundheit, 2021).
Bundesministerium fuer Gesundheit (2021) Sofortprogramm Pflege. Available at: https://www.bundesgesundheitsministerium.de/sofortprogramm-pflege.html (Accessed 4 February 2022).
European Commission (2021) 2021 Long-term care report – Trends, challenges and opportunities in an ageing society. Country profiles Vol. 2. Available at: Publications catalogue – Employment, Social Affairs & Inclusion – European Commission (europa.eu) (Accessed 4 February 2022).
The primary national-level strategy for forward looking long term care data policy in England is outlined in the UK Government’s Data Saves Lives (DSL): reshaping health and social care with data (DHSC, 2021). DSL aims to bring a coherent data strategy to a large and diverse range of stakeholders across both health and care sectors, traditionally sectors with different data needs, different data practices and different levels of digital maturity. DSL was launched in June 2021 and aims to feed into primary legislation through the Health and Social Care Bill, and also influence secondary legislation. The strategy is being run by NHS England & Improvement following the merger of NHSE&I with NHS X and NHS Digital in November 2021 (Source: DHSC).
Much of the strategy is given over to building on what it perceives as momentum gained during the pandemic in health data. Specifically the linkage, integration, interoperability of data within health systems and between health and social care systems for the purposes of informing decisions with population health data and creating efficiencies in the aggregation and use of health data by researchers.
One chapter of seven is given over to long term care, Chapter 4 Improving data for adult social care. General commitments are made to addressing the following issues: access to basic information for providers of adult social care; addressing gaps in data collected by local authorities (for instance, all those they don’t fund); integration of health and social care data; expanding the use of care technologies. The problems are discussed at a high level and financial costings, committed budgets and delivery dates are not included and have been absent from subsequent policy announcements on social care planning and spending (O’Donovan, 2021).
A survey and consultation on the strategy ran throughout the summer of 2021 and attracted submissions from a broad set of stakeholder organisations such as health and care think tanks and data specialists such as the Information Commissioners Office, The National Data Guardian and the UK Pandemic Ethics Accelerator.
A webinar hosted by LTCcovid on 18th October 2021 brought together a panel of leading practitioners and academics from different parts of social care and across the UK. They identified seven data issues for policy makers working on digital transformation in the sector:
- Lessons about social data use during the pandemic are not agreed by everyone. For instance, data infrastructure such as the adult social care capacity tracker has had unforeseen consequences such as increased burdens on staff. These are often unacknowledged in plans for future data policy.
- The continued lack of data on people who pay for their own care or do not receive services from local authorities remains a priority issue across social care.
- Tensions between conflicting desires for private data, more data, minimal data and no data must be addressed in future policy plans if trust in public social care data is to be built.
- New tensions have arisen due to decisions that are being made with the data today that were not agreed with the providers from the start.
- At the same time, robust data infrastructures are a prior condition of wider reform across UK social care, critical for anticipatory appraisal, ongoing monitoring and evaluation of innovation in services and practices.
- Opportunities for optimism include building social care data that is designed around the wellbeing of people in communities – such data would go beyond the existing principles and values of population data in health to report on the relationships and values that matter for care.
- For this, new measures with which to assess data quality and new ways of assessing and improving data operations within councils will be needed.
DHSC (2021). Data saves lives: reshaping health and social care with data. Department of Health and Social Care Policy Paper. Retrieved from: Data saves lives Accessed on 28/03/2022
O’Donovan, C. (2021). Getting the basics right in digital social care transformations. The BMJ Opinion.
Last updated: March 28th, 2022 Contributors: Cian O'Donovan |
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 email@example.com
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.