A scoping review on the impact of austerity on healthcare access in the European Union: rethinking austerity for the most vulnerable.

BACKGROUND: There is consensus that the 2008 financial and economic crisis and related austerity measures adversely impacted access to healthcare. In light of the growing debt caused by the COVID-19 crisis, it is uncertain whether a period of austerity will return. OBJECTIVE: This study aims to provide a structured overview of the impact of austerity policies in the EU-28 zone, applied in response to the Great Recession, on access to health care for the adult population, using the five access dimensions by Levesque et al. (2013). METHODS: This study followed the PRISMA extension for Scoping Reviews guideline. Medline (PubMed) and Web of Science were searched between February 2021 and June 2021. Primary studies in the English language published after the 1st of January 2008 reporting on the possible change in access to the healthcare system for the adult population induced by austerity in an EU28 country were included. RESULTS: The final search strategy resulted in 525 articles, of which 75 studies were reviewed for full-text analysis, and a total of 21 studies were included. Results revealed that austerity policy has been primarily associated with a reduction in access to healthcare, described through four main categories: i) Increase in rates of reported unmet needs (86%); ii) Affordability (38%); iii) Appropriateness (38%); iv) and Availability and Accommodation (19%). Vulnerable populations were more affected by austerity measures than the general population when specific safeguards were not in place. The main affected adult vulnerable population groups were: patients with chronic diseases, elderly people, (undocumented) migrants, unemployed, economically inactive people and individuals with lower levels of education or socioeconomic status. CONCLUSION: Austerity measures have led to a deterioration in access to healthcare in the vast majority of the countries studied in the EU-28 zone. Findings should prompt policymakers to rethink the fiscal agenda across all policies in times of economic crisis and focus on the needs of the most vulnerable populations from the health perspective.

Using Digital Tools to Study the Health of Adults Born Preterm at a Large Scale: e-Cohort Pilot Study.

BACKGROUND: Preterm birth is a global health concern. Its adverse consequences may persist throughout the life course, exerting a potentially heavy burden on families, health systems, and societies. In high-income countries, the first children who benefited from improved care are now adults entering middle age. However, there is a clear gap in the knowledge regarding the long-term outcomes of individuals born preterm. OBJECTIVE: This study aimed to assess the feasibility of recruiting and following up an e-cohort of adults born preterm worldwide and provide estimations of participation, characteristics of participants, the acceptability of questions, and the quality of data collected. METHODS: We implemented a prospective, open, observational, and international e-cohort pilot study (Health of Adult People Born Preterm-an e-Cohort Pilot Study [HAPP-e]). Inclusion criteria were being an adult (aged ≥18 years), born preterm (<37 weeks of gestation), having internet access and an email address, and understanding at least 1 of the available languages. A large, multifaceted, and multilingual communication strategy was established. Between December 2019 and June 2021, inclusion and repeated data collection were performed using a secured web platform. We provided descriptive statistics regarding participation in the e-cohort, namely, the number of persons who registered on the platform, signed the consent form, initiated and completed the baseline questionnaire, and initiated and completed the follow-up questionnaire. We also described the main characteristics of the HAPP-e participants and provided an assessment of the quality of the data and the acceptability of sensitive questions. RESULTS: As of December 31, 2020, a total of 1004 persons had registered on the platform, leading to 527 accounts with a confirmed email and 333 signed consent forms. A total of 333 participants initiated the baseline questionnaire. All participants were invited to follow-up, and 35.7% (119/333) consented to participate, of whom 97.5% (116/119) initiated the follow-up questionnaire. Completion rates were very high both at baseline (296/333, 88.9%) and at follow-up (112/116, 96.6%). This sample of adults born preterm in 34 countries covered a wide range of sociodemographic and health characteristics. The gestational age at birth ranged from 23+6 to 36+6 weeks (median 32, IQR 29-35 weeks). Only 2.1% (7/333) of the participants had previously participated in a cohort of individuals born preterm. Women (252/333, 75.7%) and highly educated participants (235/327, 71.9%) were also overrepresented. Good quality data were collected thanks to validation controls implemented on the web platform. The acceptability of potentially sensitive questions was excellent, as very few participants chose the "I prefer not to say" option when available. CONCLUSIONS: Although we identified room for improvement in specific procedures, this pilot study confirmed the great potential for recruiting a large and diverse sample of adults born preterm worldwide, thereby advancing research on adults born preterm.

Record linkage of routine and cohort data of children in Portugal: challenges and opportunities when using record linkage as a tool for scientific research.

Linking records could serve as a useful tool for scientific research and as a facilitator for local policymaking. This article examines the challenges and opportunities for researchers to lawfully link routinely collected health and education data with cohort data of children when using it as a tool for scientific research in Portugal. Such linking can be lawfully conducted in Portugal if three requirements are met. First, data processing pursues a legitimate purpose, such as scientific research. Secondly, data linking complies with the legal obligations of research entities and researchers, acting as data controllers or processors, and it respects the rights of children as data subjects. Finally, data linking is based on the explicit written consent of those with parental responsibility for the child. So far, the implementation of the General Data Protection Regulation in Portugal has not facilitated record linkage. It is argued that further harmonised implementation of that Regulation across European Union and European Economic Area Member States, establishing a minimum shared denominator for record linkage in scientific research for the common good, including without explicit consent, is needed.

Impact of macro-socioeconomic determinants on sustainable perinatal health care in Portugal: a qualitative study on the opinion of healthcare professionals and experts.

BACKGROUND: The WHO identified the importance of macro-socioeconomic determinants and political context as interlinked key factors affecting healthcare quality and health equity. As a response to the recent economic and financial crisis, Portugal approved in 2011 the Economic Adjustment Programme (EAP) to obtain financial assistance from the Troika in order to reduce public debt. This study aims to analyse the impact of the economic crisis and the EAP on perinatal healthcare quality for very preterm (VPT) and/or very low birth weight (VLBW) infants, as perceived by healthcare professionals and experts, within the health administrative regions of the two major metropolitan areas in Portugal. METHODS: A qualitative approach was applied to receive an in-depth understanding and accomplish perspective variability. A purposive sampling technique was used. Semi-structured interviews were conducted with twenty-one healthcare professionals and experts between October 2018-July 2019. Inductive thematic analysis was performed which encompassed a five-step categorization procedure. Data analysis was undertaken by utilizing Nvivo2011 software. Evolved themes were then associated with WHO's Quality Standards on Maternal and New-born Care. A framework on the impact of macro-socioeconomic determinants on perinatal health care quality was developed. RESULTS: Although participants did not perceive the quality of perinatal care had deteriorated, the analysis of their accounts on work experience revealed that it was indeed adversely modified in all WHO Quality Standards. Health care provision was perceived as detrimental in five main areas: 1) Availability of human resources; 2) Functional referral systems; 3) Competent and motivated human resources; 4) Emotional support; and 5) Essential physical resources available. Policy reforms by the EAP resulted in reduced timeliness of care, increased waiting times, cuts in sequence and duration of consultations, and deficiencies in follow-up care for VPT/VLBW infants and their mothers. The EAP directly influenced working environment of healthcare professionals by causing stress, burnout, work absence, and brain drain. CONCLUSION: An interrelation between macro-socioeconomic determinants and perinatal health care quality was disclosed. The economic crisis and EAP have adversely modified equitable perinatal health care quality for VPT/VLBW infants and their mothers. Our findings underlined the negative impact of austerity policies on vulnerable populations.

2008 economic crisis impact on perinatal and infant mortality in Southern European countries.

INTRODUCTION: The study of crisis events provides important lessons to prepare for upcoming events. The Great Recession's impact on perinatal health in Europe can provide relevant insights into the healthcare and social protection systems' response to the protection of the health of the most vulnerable groups. OBJECTIVE: To assess time trends and international disparities in perinatal mortality rates (PMR) and infant mortality rates (IMR), following the Great Recession, and their association with socioeconomic indicators in Portugal, Greece, Italy and Spain. METHODS: Associations were assessed through generalised linear models for all four countries. A Poisson joinpoint regression model was applied to explore PMR and IMR trend changes between 2000 and 2018. Country disparities were analysed using mixed-effects multilevel models. RESULTS: IMR and PMR have decreased overall in the four selected countries between 2000 and 2018. Still, whereas in Spain, Italy and Portugal the decreasing pace was attenuated after 2009, in Greece a positive trend was found after the 2008 crisis. IMR and PMR were significantly associated with socioeconomic indicators in all four countries. National disparities in the evolution of IMR and PMR were significantly associated with most socioeconomic indicators between 2000 and 2018. CONCLUSION: Our results confirm the impact of the Great Recession on PMR and IMR trends in all four countries, taking recurring associations between macroeconomic cycles, variations in mortality trends, macroeconomic volatility and stagnation of IMR and PMR into account. The association with socioeconomic indicators stresses the need to strengthen social protection and healthcare systems to better protect the population's health from the earliest days.

The influence of the Great Recession on perinatal health-an ecological study on the trend changes and regional differences in Portugal.

Background: Few studies examine the relationship between socioeconomic factors and trends in mortality in high-income European countries. Due to the lack of regional-level data, most recent studies on social inequality in Portugal do not investigate regional differences. This study analyses time trends and regional disparities in the evolution of perinatal mortality (PMR) and infant mortality (IMR) associated with demographic and socioeconomic indicators following Portugal's 2008 economic and financial crisis. Methods: Associations were assessed using generalised linear models. A Poisson joinpoint regression model was applied to identify relevant PMR and IMR changes between 2000 and 2018. Country regional disparities were analysed using Mixed Effect Multilevel models. Findings: IMR and PMR significantly decreased in the pre-crisis period but not in the post-crisis period. The significant differences between regions in IMR and PMR in 2000 were followed by a different evolution of regional IMR after 2008. PMR and IMR were not significantly associated with socioeconomic indicators. A significant positive association with maternal age at first birth was identified. Interpretation: Results confirm the influence of the crisis on PMR and IMR trends in Portugal, taking into account recurring associations between macroeconomic cycles, variations in mortality trends, macroeconomic volatility, and stagnation of IMR and PMR. Regional inequalities confirm the internal variability of the crisis influence and persistent spatial inequalities affecting IMR patterns. Funding: FCT, under the Institute of Public Health of the University of Porto (ISPUP)-EPIUnit (UIDB/04750/2020) and ITR (LA/P/0064/2020), Maastricht University's external PhD programme under the Care and Public Health Research Institute (CAPHRI), and the RECAP preterm project (grant agreement no 733280).

Increased interaction and procedural flexibility favoured participation: Study across European cohorts of preterm born individuals.

OBJECTIVE: To understand participation and attrition phenomena variability in European cohorts of individuals born preterm through in-depth exploration of the interplay of situational elements involved. METHODS: Multi-situated qualitative design, using focus groups, semi-structured interviews and collaborative visual methodology with a purposive sample of adults born preterm, parents and professionals (n = 124) from eight cohorts in seven European countries. RESULTS: Most cohort participants were motivated by altruism/solidarity and gratitude/sense of duty to reciprocate (only absent in adults aged 19 - 21), followed by expectation of direct benefit to one's health and knowledge amongst participating adults. Common deterrents were perceived failure in reciprocity as in insufficient/inadequate interaction and information sharing, and postal questionnaires. Combining multipurpose, flexible strategies for contact and assessment, reminders, face-to-face and shorter periodicity and not simply adding retention strategies or financial incentives favoured participation. Professionals' main challenges entailed resources, funding and, European societal changes related to communication and geopolitical environment. CONCLUSION: Retention would benefit from tailoring inclusive strategies throughout the cohorts' life cycle and consistent promotion of reciprocal altruistic research goals. Investing in regular interaction, flexibility in procedures, participant involvement and return of results can help mitigate attrition as well as considering mothers as main facilitators to participating children and impaired adults.

Record linkage of population-based cohort data from minors with national register data: a scoping review and comparative legal analysis of four European countries.

Background: The GDPR was implemented to build an overarching framework for personal data protection across the EU/EEA. Linkage of data directly collected from cohort participants, potentially serving as a prominent tool for health research, must respect data protection rules and privacy rights. Our objective was to investigate law possibilities of linking cohort data of minors with routinely collected education and health data comparing EU/EEA member states. Methods: A legal comparative analysis and scoping review was conducted of openly accessible published laws and regulations in EUR-Lex and national law databases on GDPR's implementation in Portugal, Finland, Norway, and the Netherlands and its connected national regulations purposing record linkage for health research that have been implemented up until April 30, 2021. Results: The GDPR does not ensure total uniformity in data protection legislation across member states offering flexibility for national legislation. Exceptions to process personal data, e.g., public interest and scientific research, must be laid down in EU/EEA or national law. Differences in national interpretation caused obstacles in cross-national research and record linkage: Portugal requires written consent and ethical approval; Finland allows linkage mostly without consent through the national Social and Health Data Permit Authority; Norway when based on regional ethics committee's approval and adequate information technology safeguarding confidentiality; the Netherlands mainly bases linkage on the opt-out system and Data Protection Impact Assessment. Conclusions: Though the GDPR is the most important legal framework, national legislation execution matters most when linking cohort data with routinely collected health and education data. As national interpretation varies, legal intervention balancing individual right to informational self-determination and public good is gravely needed for health research. More harmonization across EU/EEA could be helpful but should not be detrimental in those member states which already opened a leeway for registries and research for the public good without explicit consent.