By Andrea E. Schmidt1, Linda A. Abboud2, Petronille Bogaert2,3
1 Senior Health Expert, Department of Health Economics and Health Systems Analysis, Austrian National Public Health Institute, Stubenring 6, 1010 Vienna, Austria
2Department of Epidemiology and Public Health, Sciensano, Brussels, Belgium
3School of Social and Behavioral Sciences, Tilburg University, Tilburg, the Netherlands
For more information: Schmidt, A.E., Abboud, L.A. & Bogaert, P. Making the case for strong health information systems during a pandemic and beyond. Arch Public Health 79, 13 (2021). https://doi.org/10.1186/s13690-021-00531-5 (Open Access)
The Sars-CoV-2 pandemic exacerbates existing inequalities across health care systems globally. It also highlights, like no other crisis before, existing weaknesses in health information systems (HIS) – both in the health care sector as much as in the long-term care (LTC) (or ‘social care’) sector.
In general, HIS face two key challenges:
(1) Processing information directly related to health and social care use (such as information on the number of users in residential care settings or patients in hospitals, as well as information on treatments or diagnoses in each setting); and
(2) Processing additional holistic information not directly related to the health or social care sector, e.g. on socio-economic determinants of acquiring an infection, infrastructure with lab capacities around residential care homes or similar.
A key question is then also in how far information from (1) and (2) may be linked with each other. Further, it is essential to determine in how far information from health and social care may be linked with each other. For instance, are SARS CoV2 infections in residential care homes reported equally as infections in hospitals? Can residential care homes be identified in the data? Is information about LTC staff available so as to facilitate planning during emergencies in the pandemic?
We analysed information collected during a regular bi-weekly exchange forum with key national public health experts from 16 European countries in the context of the EU-funded Joint Action InfAct (https://www.inf-act.eu/) in 2020. Based on the analysis, we were able to draw six key lessons on how to improve HIS:
- First, capacity-building for health information systems in health and social care is crucial beforea pandemic hits. Countries with strong surveillance systems are, after all, better able to respond to a crisis. Sustainability in funding of routine data collection mechanisms, automated communication flows between institutions and government levels are key elements, as well as compliance with data protection laws. Other resources that are a precondition for strong HIS are a legal basis for all aspects concerning HIS, an adequate number of health and social care staff, and the necessary infrastructure with regard to health and LTC institutions and respective ICT infrastructure.
- Second, we need longitudinal information on vulnerable groups, including people in residential care, that can be linked to health information. Monitoring the wider effects of COVID-19 requires longitudinal data from health and LTC systems, such as surveys with reference points from before the time of the pandemic. People in need of long-term care are among the most vulnerable as the current pandemic has shown, with a large share of those most at risk of dying from COVID-19 being older people and/or those who live in care homes. Countries with HIS that integrate information from the health and the social care sector and acknowledge their interconnectedness are likely better able to respond to similar crises also in the future. In addition, also among older age groups, socially vulnerable groups (e.g. homeless people, drug users, sex workers) need to be monitored closely, as precarious working and living conditions have shown to foster the occurrence of outbreaks of COVID-19. Administrative data (e.g. registries) that allow for identification of specific social settings or socio-economic characteristics of the population, in addition to health-related characteristics, are particularly valuable in this context.
- Third, we need strong data reporting – on staff in health and social care, and on what is happening in primary care. Our analysis shows that countries which have comprehensive and complete reporting systems for staffing numbers in hospitals and residential care homes may be better able to manage and create separate teams (e.g. to avoid infections). Countries with sufficient capacities in primary health care (incl. documentation systems) are better able to monitor suspicious cases for SARS CoV2 in the phases following the peak. Countries like France or Spain monitored people with COVID-19 symptoms from the onset, including collection of information on time needed between occurrence of first symptoms until testing and/or diagnosis. In addition, where the health literacy of primary health care providers is strong, they may be better able to communicate potential risks during the pandemic to their patients, or reach out to patients at risk proactively. Equally, HIS that systematically collect information on available materials, hospitals or residential care homes, including medication, and collaborate with other sectors (e.g. trade, economic sector) are in a better position to respond to the crisis, and clarify logistical questions more rapidly than other countries.
- Fourth, linking data sources across settings helps identify unmet needs for essential health care, also among older people. Countries with strong HIS allow for detailed reporting on health care use in all settings and including for people in need of LTC. Reporting systems should cover ambulatory care use, as well as continuity of care between primary and secondary care, and care at the interfaces between health and social care sector. In many countries, during the peak of the crisis, demand for essential health care decreased. Older people postponed medical care for fear of infection or saw providers close down, despite being affected by chronic disease in need of continuous care. Adequate and reliable data management to make such gaps transparent is a crucial element of any HIS. Further, coordination of data collection across sectors, e.g. via a unique identifier or a centralised data storage platform for all health care sectors may be a crucial element in handling the pandemic, as it is done for instance in Denmark or Norway. But even there, data collection in the social care sector is not fully integrated yet.
- Fifth, HIS need to be flexible enough to allow for innovative solutions, linking people in need of care with their health and social care providers. For example, having the legal basis clarified for the use of video or phone consultations beforehand enabled some countries to rapidly reduce human contacts between patients and doctors substantially during the pandemic. It is important to ensure however that the digital divide does not exclude those in need of care from such solutions. The crisis has also shown the potential for the use of mobile services and digital technologies in the health and social care sector, as well as difficulties in harmonised data protection legalisation across EU countries.
- Sixth, transparent dissemination of data on health and social care utilisation (e.g. using dashboards) tends to create public trust. Good practice examples in this respect are Portugal and France. As the WHO recommends, data analytics on public health decisions must be data driven at all times. This pandemic has shown that reporting on mortality numbers, e.g. in residentical care homes, varies widely across European countries, and sometimes even at subnational level. It is therefore required that a strong HIS communicates in a clear and transparent language. This includes communicating on complex differences in reporting methodologies, transparent information on how numbers are being produced, and also the transparency with which evidence supporting re-opening after lockdown is communicated. Important questions for evaluating the HIS in this respect are: How does the government interact with experts in the field? How do experts report evidence to policy-makers? Are evidence-building documents available to the general public? How does interaction with public opinion take place as a consequence of measures taken (e.g. social media, press conferences)?
The country experiences reported here leave as a central message that successful reactions to the pandemic are (also) grounded in strong HIS in both health and social care, ultimately to the benefit of the health of the population while also creating a number of economic and psycho-social benefits.
Joint Action on Health Information Systems (JA InfAct): https://www.inf-act.eu/
Population Health Research Infrasturture (PHIRI): https://www.phiri.eu/