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Towards a comprehensive strategy for the management of rare diseases in Slovenia : outlining an IT-enabled ecosystemic approach
ID Stanimirović, Dalibor (Avtor), ID Murko, Eva (Avtor), ID Battelino, Tadej (Avtor), ID Grošelj, Urh (Avtor), ID Žerjav-Tanšek, Mojca (Avtor)

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Izvleček
Rare diseases (RDs), with distinctive and complex features, pose a serious public health concern and represent a considerable challenge for the Slovenian healthcare system. One of the potential approaches to tackling this problem and treating patients with RDs in a quality and effective manner is to form an RD ecosystem. This represents a functional environment that integrates all stakeholders, procedures, and relationships required for the coordinated and effective treatment of patients. This paper explores the current situation in the field of RDs, especially in light of the proposed ecosystemic arrangement, and provides an outline for the design of an RD ecosystem in Slovenia. The research applies a case-study design, where focus groups are used to collect evidence from the field, assess the state of affairs, and generate ideas. Structured focus group discussions were conducted with preeminent experts affiliated with the leading institutions in the field of RDs in Slovenia. Analyses and interpretations of the obtained data were carried out by means of conventional content analysis. Setting up an RD ecosystem in Slovenia would lead to significant benefits for patients, as it could promote the coordination of healthcare treatment and facilitate extensive monitoring of the treatment parameters and outcomes. A well-organized RD ecosystem could garner considerable systemic benefits for evidence-informed policymaking, a better utilization of resources, and technological innovation. Delivering quality healthcare in this complex field is largely reliant on the effective integration and collaboration of all entities within the RD ecosystem, the alignment of related systemic factors, and the direction of healthcare services to support the needs and well-being of patients with RDs.

Jezik:Angleški jezik
Ključne besede:rare diseases, patient treatment, ecosystemic approach, case study, Slovenia
Vrsta gradiva:Članek v reviji
Tipologija:1.01 - Izvirni znanstveni članek
Organizacija:MF - Medicinska fakulteta
Status publikacije:Objavljeno
Različica publikacije:Objavljena publikacija
Leto izida:2021
Št. strani:17 str.
Številčenje:Vol. 18, iss. 23, art. 12395
PID:20.500.12556/RUL-136711 Povezava se odpre v novem oknu
UDK:616
ISSN pri članku:1660-4601
DOI:10.3390/ijerph182312395 Povezava se odpre v novem oknu
COBISS.SI-ID:86668291 Povezava se odpre v novem oknu
Datum objave v RUL:17.05.2022
Število ogledov:392
Število prenosov:78
Metapodatki:XML RDF-CHPDL DC-XML DC-RDF
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Gradivo je del revije

Naslov:International journal of environmental research and public health
Skrajšan naslov:Int. j. environ. res. public health
Založnik:MDPI
ISSN:1660-4601
COBISS.SI-ID:1818965 Povezava se odpre v novem oknu

Licence

Licenca:CC BY 4.0, Creative Commons Priznanje avtorstva 4.0 Mednarodna
Povezava:http://creativecommons.org/licenses/by/4.0/deed.sl
Opis:To je standardna licenca Creative Commons, ki daje uporabnikom največ možnosti za nadaljnjo uporabo dela, pri čemer morajo navesti avtorja.
Začetek licenciranja:01.12.2021

Sekundarni jezik

Jezik:Slovenski jezik
Ključne besede:redke bolezni, obravnava pacienta, javno zdravje, slovenski zdravstveni sistem, zdravljenje

Projekti

Financer:ARRS - Agencija za raziskovalno dejavnost Republike Slovenije
Številka projekta:P3-0343
Naslov:Etiologija, zgodnje odkrivanje in zdravljenje bolezni pri otrocih in mladostnikih

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