Abstract
In Hungary, the National Health Insurance Fund provides health care coverage for nearly all residents, but healthcare spending is below the EU’s average (6.4% versus 9.9% of the GDP in 2019, respectively). In 1997, patients’ rights were established by laws of the healthcare system. The patients’ voice, however, has remained weakly embedded in decision-making processes both on the system and individual patient levels. Policy progress achieved in the past years may foster patient-centeredness in health policy decision-making. However, people-reported data are not yet embedded in the Hungarian health information system and national population or household surveys, thus undermining the monitoring of the performance of the health system regarding patient-centred aspects. From the academic research side, several advances have occurred regarding the availability of validated instruments for the measurement of patient-centred aspects. These recent studies have placed Hungary in a uniquely advanced position compared with other countries in the Central and Eastern European (CEE) region. The use of those instruments in clinical guidelines and practices, to the education curricula of future health workers, is still in an early stage.
Zusammenfassung
In Ungarn sind nahezu alle Bürgerinnen und Bürger im Nationalen Krankenversicherungsfonds krankenversichert, jedoch liegen die Gesundheitsausgaben unter dem EU-Durchschnitt (2019 waren dies 6,4 % gegenüber 9,9 % des Bruttoinlandsprodukts). Im Jahr 1997 wurden die Rechte von Patienten in Gesetzen zum Gesundheitssystem niedergelegt. Ihre Stimme findet in den Entscheidungsfindungsprozessen sowohl auf der Systemebene als auch auf der Ebene individueller Patienten jedoch noch immer zu wenig Gehör. Der in den vergangenen Jahren erreichte politische Fortschritt könnte zur Förderung von Patientenzentriertheit in gesundheitspolitischen Entscheidungen beitragen. Von den Patienten berichtete Daten haben bislang jedoch weder Eingang in das ungarische Gesundheitsinformationssystem noch in nationale Bevölkerungs- oder Haushaltsumfragen gefunden, was die Überwachung der Leistungsfähigkeit des Gesundheitssystems im Hinblick auf patientenzentrierte Merkmale beeinträchtigt. Auf Seiten der akademischen Forschung sind etliche Fortschritte im Hinblick auf die Verfügbarkeit von validierten Instrumenten zur Erfassung patientenzentrierter Parameter zu verzeichnen. Diese neueren Studien sehen Ungarn im Vergleich zu anderen mittel- und osteuropäischen Ländern in einer eindeutig verbesserten Position. Die Verwendung solcher Instrumente in klinischen und Praxisleitlinien bis hin zu den Ausbildungslehrplänen für zukünftige Gesundheitsfachkräfte steckt noch in der Anfangsphase.
Keywords
Schlüsselwörter
Introduction to Hungary’s healthcare system
Since 2004, Hungary has been a European Union member state located in Central Europe. The population in Hungary was 9.1 million people in 2020 and almost a fifth was aged 65 years old and over. In 2020, the GDP per capita was 22.103 EUR (power purchasing parity), which is below the EU’s average (29.801 EUR). Life expectancy at birth increased by nearly two years between 2010 and 2019 (72.2 for males and 78.7 for females) [
[1]
]. Yet, despite improvements in life expectancy, the average person in Hungary lives nearly five years less compared with the EU average [Hungarian Central Statistical Office. 2022; Available from: https://www.ksh.hu/?lang=en.
[2]
]. This difference is partly attributable to poor adoption of healthy lifestyle habits as depicted in indicators such as mortality rates from preventable causes, which were the highest among EU member states before the COVID-19 pandemic [[2]
]. Thus, there is a clear need for public health strategies and healthcare interventions to foster healthy choices among citizens and strengthen their (e)health literacy, for which citizens’ involvement in decision-making processes is crucial.The National Health Insurance Fund, administered by the National Institute of Health Insurance Fund Management (NEAK), provides health care coverage for nearly all residents. Healthcare spending was 6.4% of the GDP in 2019 in contrast with the EU’s average of 9.9%, and the health expenditure per capita is also staggeringly low compared with the EU’s average [
[2]
]. GPs are financed on a capitation basis with some practice location and performance considerations. County hospitals are supervised by the National Directorate-General for Hospitals. Most inpatient care spending is publicly funded but out-of-pocket expenses (as full or co-payment) are remarkably present in the outpatient care sector (outpatient clinics, dental care), as well as in financing pharmaceuticals and medical devices [[2]
].Legislative efforts
In 1997, patients’ rights were established in the healthcare system’s by laws covering many dimensions, such as the right to be informed about risks and benefits of treatment options, self-determination, care refusal, and filing complaints related to the care received [
[3]
]. Since then, however, the patient’s voice has remained weakly embedded in decision-making processes either in the system as a whole or in the medical doctor-patient relationship [Integrált Jogvédelmi Szolgálat. Patients’ rights. 1997 [12 March 2022]; Available from: https://www.patientsrights.hu/patients-rights.html.
[4]
]. During the past years, policy progress has been achieved in Hungary that may foster the patient’s voice in health policy decision-making. One example is the consolidation of a health system performance assessment (HSPA) framework and its use to monitor the performance of the health system [[5]
]. The National Healthcare Service Centre (ÁEEk) conducts the performance assessment using a set of 75 indicators from the HSPA framework in Hungary. From the 75 indicators in Hungary’s HSPA framework, only two indicators seek to measure how responsive the healthcare system is to the patients’ needs, preferences, and expectations [[6]
]. One indicator measures the number of complaints filed by patients and received by the National Centre for Patients’ Rights (OBDK). The other indicator measures the satisfaction with health care providers based on data collected via the European Health Interview Survey. Data on people-reported data, notably on experiences of care and outcomes from the perspective of patients, are not yet embedded in the Hungarian health information system and national population or household surveys, thus undermining the monitoring of the performance of the health system regarding patient-centred aspects [[7]
].Research efforts and public opinion surveys
The contribution of scholars and academia, often supported by public funding, are key to strengthening the patient-centred agenda in Hungary. Notably, several advances have occurred regarding the availability of validated instruments and measures to support clinical assessment and economic evaluations, and the measurement and monitoring of patient-centred aspects such as care experiences and shared decision-making.
Validation of people-reported measures for Hungary
Here we provide a non-exhaustive list of relevant patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) that have been validated for Hungary, which are available for use within and across levels of the healthcare system:
- -Shared Decision Making 9-item Questionnaire (SDM-Q-9). This tool is one of the most used to assess SDM in healthcare settings. Since its development in 2010, the tool has been available in 32 languages, including Hungarian since 2019 [[8]]. Using a cross-sectional population-based online survey (n = 537), findings showed the share of positive responses regarding involvement during a health-related decision of the participants in the previous 6 months varied between 42% and 66% across the 9 items measured with the tool, signalling room for improvement regarding patients’ involvement in medical decision-making in Hungary [[8]].
- -Patient Activation Measure (PAM-13). This tool measures patients’ skills, knowledge, and motivation to manage their health [[9]]. The Hungarian version of the PAM-13 was developed in 2020 showing excellent validity and moderate test-retest reliability in an online cross-sectional survey among a sample (n = 779) of the general population aged 40 and over [[10]].
- Zrubka Z.
- Vekas P.
- Nemeth P.
- Dobos A.
- Hajdu O.
- Kovacs L.
- et al.
Validation of the PAM-13 instrument in the Hungarian general population 40 years old and above.Eur J Health Econ. 2022; https://doi.org/10.1007/s10198-022-01434-0 - -The Mother-centred Pregnancy Care Survey aims at measuring maternity care experiences and draws from the surveys Listening to Mothers 3 and Changing Childbirth in British Columbia [[11]]. The findings showed significant differences between care models regarding informed consent practices and women's perceptions of autonomy, and priority areas to enhance maternity care experiences were outlined.
- -Patient-Reported Experience Measures (PREMs). Based on the work of the OECD with the Patient-Reported Indicator Surveys initiative, a series of studies on care experiences using international standardised measures were conducted in Hungary. Following a population-based survey in 2019, several studies followed measuring care experiences in outpatient care settings [[12]], unmet medical needs [[13]], waiting times [[14]], and preference elicitation for attributes of the care experience [
- Brito Fernandes O.
- Lucevic A.
- Pentek M.
- Kringos D.
- Klazinga N.
- Gulacsi L.
- et al.
Self-Reported Waiting Times for Outpatient Health Care Services in Hungary: Results of a Cross-Sectional Survey on a National Representative Sample.Int J Environ Res Public Health. 2021; 18https://doi.org/10.3390/ijerph18052213[15]].- Brito Fernandes O.
- Pentek M.
- Kringos D.
- Klazinga N.
- Gulacsi L.
- Baji P.
Eliciting preferences for outpatient care experiences in Hungary: A discrete choice experiment with a national representative sample.PLoS One. 2020; 15https://doi.org/10.1371/journal.pone.0235165 - -eHealth Literacy Scale (eHEALS). This 8-item tool measures a person’s ability to find, evaluate, and apply electronic health information to their health problems. This tool was adapted to the Hungarian population in 2019 [[16]] and more recently the association between eHealth literacy and PREMs were explored [[17]].
- Zrubka Z.
- Brito Fernandes O.
- Baji P.
- Hajdu O.
- Kovacs L.
- Kringos D.
- et al.
Exploring eHealth Literacy and Patient-Reported Experiences With Outpatient Care in the Hungarian General Adult Population: Cross-Sectional Study.J Med Internet Res. 2020; 22https://doi.org/10.2196/19013 - -ICEpop CAPability measure for Adults/Older people (ICECAP-A and ICECAP-O). These two tools measure the capability well-being of adults and older adults, respectively. Both hold preference values thus can be used in economic evaluations. Validation to the Hungarian population has been published recently [18,19].
- -Care-related quality of life of informal caregivers (CarerQol). This preference-based tool has been developed to assess informal care-related quality of life of informal caregivers and can be used in economic evaluations [[20]]. The Hungarian version was developed as part of a three-country study (Hungary, Poland, Slovenia) in a cross-sectional population-based survey involving a sample of 1000 persons from each country [[21]].
This vast body of work developed in the past five years can contribute to positioning the patient-centred agenda at the core of the health policy debate, placing Hungary in a uniquely advanced position compared with other countries in the Central and Eastern European (CEE) region in terms of availability of measurement tools to explore patients’ preferences and to assess the performance of the healthcare system from a patient-centred perspective. For instance, the SDM-Q-9 is available in Bulgarian, Czech, Hungarian, Romanian and Slovakian language, but the CarerQol has been validated only for Hungary, Poland and Slovenia, while the ICECAP-A/-O and PAM-13 only for Hungary.
Population surveys
The PROM and PREM instruments above have been applied in population-based surveys. From a public health perspective, normative population data obtained using the SDM-Q-9 [
[8]
], eHEALS [[16]
], PREMs [12
, 13
, 14
], CarerQol [- Brito Fernandes O.
- Lucevic A.
- Pentek M.
- Kringos D.
- Klazinga N.
- Gulacsi L.
- et al.
Self-Reported Waiting Times for Outpatient Health Care Services in Hungary: Results of a Cross-Sectional Survey on a National Representative Sample.
Int J Environ Res Public Health. 2021; 18https://doi.org/10.3390/ijerph18052213
[22]
] and ICECAP-A/-O [[18]
] instruments in Hungary allow comparisons between subgroups (e.g., by location, specific populations), the design of interventions targeting specific problems, and foster cross-national comparisons. Additionally, these can be embedded in health economic evaluation initiatives.Assessment of patients’ health- and healthcare-related preferences using PROMs and PREMs
The use of population preferences in health economic evaluations (cost-utility analyses) deserve further attention. The EQ-5D measure reflects the preferences (utility) that the public attaches to different health states. The EQ-5D is the most widely used measurement tool to express health gains in the form of quality-adjusted life years (QALYs). For Hungary, country-specific tariffs (utility scores) have been developed both for the EQ-5D-3L and EQ-5D-5L reflecting the preferences of the Hungarian general population [
[23]
]. Similarly, country-specific tariffs have been computed for the ICECAP-A [[24]
] and CarerQol [[25]
] instruments, which has created room for preference-based multi-attribute decision-making. Having these preference-based tools with country-specific tariffs is rather exceptional as, besides Hungary, only the UK and the Netherlands have all three.Exploring patients’ subjective thoughts on future health and age-related acceptability of health states
Subjective expectations regarding future health and the level of health problems patients find acceptable at different ages may determine their health-related decisions [
26
, 27
]. For instance, subjective life-expectancy may shape patients’ agreement for major surgical interventions (e.g., hip arthroplasty, cataract surgery). Acceptability of a health problem at a specific age may determine patients’ participation in healthcare, or even reflect (at least to some extent) their preferences on resource allocation [27
, 28
]. Exploring these specific aspects can contribute to a better understanding of the determinants of patients’ health-related decision-making. In the past years, several studies (among the general population and in different patient groups (e.g., rheumatoid arthritis, age-related macular degeneration, Crohn’s disease, psoriasis, osteoporosis) were performed in Hungary [- Hermann Z.
- Pentek M.
- Gulacsi L.
- Kopcsone Nemeth I.A.
- Zrubka Z.
Measuring the acceptability of EQ-5D-3L health states for different ages: A new adaptive survey methodology.
Eur J Health Econ. 2022; https://doi.org/10.1007/s10198-021-01424-8
29
, 30
, 31
, 32
, 33
].Future challenges and opportunities for Hungary
Patient-centred care and the involvement of patients in shared decision-making processes are still in an early phase of development in Hungary. However, the work that has been developed in the past years signals an opportunity for a policy agenda to be discussed about the patient-centredness of the healthcare system. Broad engagement of stakeholders is needed for meaningful changes. These changes are cross-cutting, from how professional associations translate evidence-based intelligence into clinical guidelines and practices to the education curricula of future health workers. Additionally, closer ties within academia and between research groups and policymakers can accelerate the learning process. Particularly, learning from and collaborating with international research programs (e.g., Healthcare performance intelligence professionals - HealthPros [
[34]
]) and research groups (CarerQol research [HealthPros. HealthPros: A Marie Sklodowska-Curie Innovative Training Network for Healthcare Performance Intelligence Professionals. 2021 [August 14, 2021]; Available from: https://www.healthpros-h2020.eu.
[25]
] and EQ-5D-3L population norm initiative [[35]
] together with Poland and Slovenia). We believe, however, that besides these fruitful collaboration initiatives coming from individual research teams, it is time to develop national and regional strategies to address barriers, join and harmonise efforts, thus speeding up the implementation of patient-centred care in Hungary.Conflict of interest
In connection with writing this article, MP and ÁH received grant support from the National Research, Development, and Innovation Fund of Hungary, financed under the TKP2021-NKTA-36 funding scheme (‘Development and evaluation of innovative and digital health technologies’; ‘Evaluation of digital medical devices: efficacy, safety, and social utility’ subproject) at Óbuda University. MP is a member of the EuroQol Group, a not-for-profit organisation that develops and distributes instruments that assess and value health. OBF declared no conflict of interest.
CRediT author statement
OBF: Conceptualization, Methodology, Writing-Original draft preparation, Writing-Reviewing and Editing. ÁH: Conceptualization, Methodology, Writing-Original draft preparation. MP: Conceptualization, Methodology, Writing-Original draft preparation, Writing-Reviewing and Editing.
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Article info
Publication history
Published online: May 23, 2022
Accepted:
April 12,
2022
Received in revised form:
March 22,
2022
Received:
March 18,
2022
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