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Összefoglaló. Bevezetés: A ritka betegséggel élők ellátásában fontos előrelépések történtek az elmúlt években. Egy következő lépés lehetne hazánkban a Ritka Betegségek Nemzeti Erőforrás (Uni-Versum) Központjának (a továbbiakban: Központ) létrehozása, amely az egészségügyi, szociális és köznevelési szolgáltatásokat összehangolva és kiegészítve személyközpontú ellátást nyújtana a betegek és támogatóik részére. Célkitűzés: Célunk az volt, hogy egy nemzetközi tudományos módszertan alapján javaslatokat tegyünk arra, hogy milyen eszközökkel lehet feloldani a Központ megvalósításának lehetséges korlátozó tényezőit. Módszer: A Központ megvalósíthatóságának értékelésére interdiszciplináris szakmai egyeztetést szerveztünk különböző érintett érdekcsoportok részvételével, a SELFIE H2020 kutatási projekt által kidolgozott módszertan alapján. Az előzetesen rangsorolt legfontosabb korlátozó tényezőkre lehetséges megoldási javaslatokat tettünk. Eredmények: A lehetséges korlátozó tényezőket a résztvevők relevánsnak tartották a Központ létrehozásával kapcsolatban, és ezekre összesen 17 olyan konkrét javaslat született, amelyben a résztvevők között egyetértés alakult ki. A javaslatok kiterjedtek az ellátás tartalmára, az alkalmazott technológiák támogató szerepére, a humánerőforrás-korlátok megoldására, a hatékony vezetés és szervezés kialakítására, az összetett finanszírozási struktúra kialakítására és a kutatási lehetőségek megteremtésére is. Megbeszélés: A Központ megvalósítása esetén a ritka betegséggel élők ellátása az egészségügyi, szociális és köznevelési tevékenységeket integráló megközelítés felé mozdulna el. A kutatás során megfogalmazott javaslatok hozzájárulhatnak a Központ létrehozásához, amennyiben megvan az ehhez szükséges szakpolitikai támogatás is. Ezen túlmutatóan, a leírt munkamódszer más integrált ellátási modellek bevezethetőségének elemzéséhez is mintaként szolgálhat. Következtetés: Összefoglalva megállapíthatjuk, hogy a Központ létrehozásához számos, előzetesen is látható korlátozó tényezőt kell feloldani. Az érdekcsoportok közös javaslatai alapján kialakítható egy olyan működési forma, amely az ellátórendszerek kiegészítésével és összehangolásával jelentős társadalmi értéktöbbletet eredményezhet. Orv Hetil. 2021; 162(45): 1818–1825. Summary. Introduction: In Hungary, significant achievements have been made in the care of patients with rare diseases in recent years. A next step could be the establishment of the National Resource Centre for Rare Diseases (hereinafter: Centre) to facilitate patient-centered complex care by the integration and supplementation of existing health, social and educational services. Objective: This research aimed to develop recommendations based on international scientific methodology to overcome potential implementation barriers of the aforementioned Centre. Method: To evaluate the feasibility of the implementation, we organized an interdisciplinary workshop with representatives of different stakeholder groups, adopting the methodology developed in the SELFIE H2020 research project. During the workshop, we discussed the previously ranked, most significant implementation barriers and made recommendations for potential solutions. Results: The potential implementation barriers were considered relevant by the participants and, reflecting on these barriers, altogether 17 recommendations were developed by consensus. These recommendations were related to the content of service delivery, use of supportive technologies, overcoming workforce issues, establishing effective leadership, implementing a complex financing structure and creating research opportunities. Discussion: Implementation of the Centre would shift the care of rare diseases towards personalized and integrated health, social and educational services. Our recommendations will contribute to the establishment of the Centre, subject to positive policy decision. Furthermore, our methodological approach could support the feasibility assessment of future integrated care solutions and programs. Conclusion: Several predictable barriers must be overcome to establish the Centre. Recommendations developed by representatives of relevant stakeholders could support successful implementation and societal value generation. Orv Hetil. 2021; 162(45): 1818–1825.

Aim To develop pragmatic recommendations for Central and Eastern European (CEE) policymakers about transfer - ability assessment of integrated care models established in higher income European Union (EU) countries. Methods Draft recommendations were developed based on Horizon 2020-funded SELFIE project deliverables relat - ed to 17 promising integrated care models for multimorbid patients throughout Europe, as well as on an online survey among CEE stakeholders on the relevance of implemen - tation barriers. Draft recommendations were discussed at the SELFIE transferability workshop and finalized together with 22 experts from 12 CEE countries. Results Thirteen transferability recommendations are pro - vided in three areas. Feasibility of local implementation covers the identification and prioritization of implemen - tation barriers and proposals for potential solutions. Per - formance measurement of potentially transferable models focuses on the selection of models with proven benefits and assurance of performance monitoring. Transferability of financing methods for integrated care explores the rel - evance of financing methodologies and planning of ad - equate initial and long-term financing. Conclusions Implementation of international integrated care models cannot be recommended without evidence on its local feasibility or scientifically sound and locally rel - evant performance assessment in the country of origin. However, if the original financing method is not transfer - able to the target region, development of a locally relevant alternative financing method can be considered.

Objective: Palliative Care Consult Service (PCCS) programme was established in Hungary to provide palliative care to hospitalised patients with complex needs and to coordinate integrated care across providers. The aim of this study was to measure the association of PCCS with healthcare costs from payer's perspective. Methods: Study population consisted of patients with metastatic cancer, who were admitted to the Clinical Centre of the University of Pécs between 2014 and 2016. Patients who did not die within 180 days from enrolment were excluded. Patients receiving services from PCCS team (intervention patients) were compared to patients receiving usual care (controls). The two populations were matched using propensity scores. Data were obtained from electronic medical records linked to claims data. Results: For patients who were involved in PCCS at least 60 days before their death, the costs of care outside the acute hospital were higher. However, this was offset by savings in hospital costs so that the total healthcare cost was significantly reduced (p = 0.034). The proportion of patients who died in the hospital was lower in the PCCS group compared to the usual care group (66% vs. 85%, p = 0.022). Conclusion: Timely initiation of palliative care for hospitalised patients is associated with cost savings for the healthcare system.

Background The Palliative Care Consult Service (PCCS) programme was among the first initiations in Hungary to provide palliative care for patients admitted to hospital. The PCCS team provides palliative care for mainly cancer patients and their family members and manages the patient pathway after being discharged from the hospital. The service started in 2014 with 300–400 patient visits per year. The aim of this study is to give a comprehensive overview of the PCCS programme guided by a conceptual framework designed by SELFIE (“Sustainable intEgrated chronic care modeLs for multi-morbidity: delivery, FInancing, and performancE”), a Horizon2020 funded EU project and to identify the facilitators and barriers to its wider implementation. Methods PCCS has been selected by the SELFIE consortium for in-depth evaluation as one of the Hungarian integrated care models for persons with multi-morbidity. The qualitative analysis of the PCCS programme was based on available documents of the care provider and interviews with different stakeholders related to the programme. Results The integrated, multidisciplinary and patient-centred approach was well-received among the patients, family members and clinical departments, as verified by the increasing number of requests for consultations. As a result of the patient pathway management across providers (e.g. from inpatient care to homecare) a higher level of coordination could be achieved in the continuity of care for seriously-ill patients. The regulatory framework has only partially been established, policies to integrate care across organizations and sectors and adequate financial mechanism to support the enhancement and sustainability of the PCCS are still missing. Conclusions The service integration of palliative care could be implemented successfully in an academic hospital in Hungary. However, the continuation and enhancement of the programme will require further evidence on the performance of the integrated model of palliative care and a more systematic approach particularly regarding the evaluation, financing and implementation process.

Background OnkoNetwork is a recently established integrated care model with a personalized pathway system to manage patients with first suspect of a solid tumour in secondary care, that evolved as a regional initiative in Hungary. The primary aim of OnkoNetwork is the improvement of clinical outcomes via timely access to quality assured and defragmented healthcare services. The Horizon 2020 funded SELFIE project has selected OnkoNetwork for in-depth qualitative and quantitative evaluation. The aim of this study was to provide a qualitative evaluation of OnkoNetwork along the six components of the SELFIE conceptual framework: 1) service delivery, 2) leadership and governance, 3) workforce, 4) financing, 5) technologies and medical products, and 6) information and research. Methods Analysis of published and grey programme documentation, followed by 20 semi-structured interviews with representatives of programme initiators, general and financial managers, involved physicians and non-physician professionals, patients and their informal caregivers. Transcripts of all interviews were analysed by Mayring’s content analysis method by two independent researchers. Results This study yielded the first comprehensive description of the programme. OnkoNetwork is a blue dahila in Central and Eastern Europe, providing timely and quality-assured healthcare services for the target patients by personalized patient path monitoring and management in a financially sustainable manner without macro-level financing of its operation. Innovative professional roles were implemented for non-physicians and physicians, and a supporting information technology application was developed. Conclusions This paper provides a systematic description of OnkoNetwork on the six components of the SELFIE conceptual framework for integrated care in multimorbidity to understand how and why OnkoNetwork was implemented and cares (better) for its patients. Because integrated care models are designed and adjusted to their specific local needs and context, those few successful and sustainable models that were established in Central and Eastern European countries represent important benchmarks for other initiatives in this region. Experience with OnkoNetwork during its planning, implementation and operation including the description of key success factors and barriers as perceived by various stakeholder groups, may support the development of further integrated care models especially in countries with similar economic status and healthcare settings. Electronic supplementary material The online version of this article (10.1186/s12913-019-3957-9) contains supplementary material, which is available to authorized users.

ObjectivesThe prevalence of multimorbidity is increasing in many Western countries. Persons with multimorbidity often experience a lack of alignment in the care that multiple health and social care organisations provide. As a response, integrated care programmes are appearing. It is a challenge to evaluate these and to choose appropriate outcome measures. Focus groups were held with persons with multimorbidity in eight European countries to better understand what good health and a good care process mean to them and to identify what they find most important in each.MethodsIn 2016, eight focus groups were organised with persons with multimorbidity in: Austria, Croatia, Germany, Hungary, the Netherlands, Norway, Spain and the UK (total n=58). Each focus group followed the same two-part procedure: (1) defining (A) good health and well-being and (B) a good care process, and (2) group discussion on prioritising the most important concepts derived from part one and from a list extracted from the literature. Inductive and deductive analyses were done.ResultsOverall, the participants in all focus groups concentrated more on the care process than on health. Persons with multimorbidity defined good health as being able to conduct and plan normal daily activities, having meaningful social relationships and accepting the current situation. Absence of shame, fear and/or stigma, being able to enjoy life and overall psychological well-being were also important facets of good health. Being approached holistically by care professionals was said to be vital to a good care process. Continuity of care and trusting professionals were also described as important. Across countries, little variation in health definitions were found, but variation in defining a good care process was seen.ConclusionA variety of health outcomes that entail well-being, social and psychological facets and especially experience with care outcomes should be included when evaluating integrated care programmes for persons with multimorbidity.

Background : When evaluating innovative integrated care programmes for persons with multi-morbidity a broader approach is necessary than the traditional cost-per-QALY analysis. Namely, it’s important to gain better insight into what persons with multi-morbidity value in health and in care, in order to let evaluations capture this. The aim of this study is to determine what is important to persons with multi-morbidity when it comes to health and care. Methods : In the context of the EU Horizon2020 SELFIE project (www.selfie2020.eu) 8 focus groups were conducted in 8 European countries: the Netherlands, Austria, Croatia, Germany, Hungary, Norway, Spain, and the UK. In total, 58 persons with multi-morbidity participated the focus group discussions between June and September 2016. During these focus groups participants discussed how they defined good health and well-being and subsequently how they defined a good care process. Participants listed facets of health/well-being and care and next tried to make a prioritisation in what was most important to them. Preliminary results : Persons with multi-morbidity in the different European countries placed a lot of emphasis on having ‘enjoyment and pleasure in life’, ‘freedom and independence’, and ‘maintaining social relationships and contacts’. Interestingly, clinical health-type indicators were mentioned to a much lesser extent. Furthermore, a lot of value was placed on the interactions with care providers: a respectful treatment, shared decision-making, and good communication both between provider and participant as between multiple providers. Especially relevant in the case of multi-morbidity and mentioned by participants was that the care providers had insight into and attention for their entire situation. Not only their different health problems but also their preferences and wishes should be taken seriously. These findings will be elaborated on during the presentation, and cross-country similarities and differences will also be described. Conclusions : When evaluating integrated care programmes for persons with multi-morbidity, it is important to define outcomes that correspond to what persons with multi-morbidity define as good health/well-being and a good care process. This is necessary in order to enable better design, implementation and evaluation of these programmes that match the needs and desires of their target group.