Literature Review on Health Emigration in Rare Diseases—A Machine Learning Perspective

Author:

Skweres-Kuchta Małgorzata1ORCID,Czerska Iwona2ORCID,Szaruga Elżbieta3ORCID

Affiliation:

1. Department of Organization and Management, Institute of Management, University of Szczecin, Cukrowa 8 Street, 71-004 Szczecin, Poland

2. Department of Marketing Research, Faculty of Management, Wroclaw University of Economics and Business, 118/120 Komandorska Str, 53-345 Wroclaw, Poland

3. Department of Transport Management, Institute of Management, University of Szczecin, Cukrowa 8 Street, 71-004 Szczecin, Poland

Abstract

The article deals with one of the effects of health inequalities and gaps in access to treatments for rare diseases, namely health-driven emigration. The purpose of the paper is to systematize knowledge about the phenomenon of health emigration observed among families affected by rare diseases, for which reimbursed treatment is available, but only in selected countries. The topic proved to be niche; the issue of “health emigration in rare diseases” is an area for exploration. Therefore, the further analysis used text mining and machine learning methods based on a database selected based on keywords related to this issue. The results made it possible to systematize the guesses made by researchers in management and economic fields, to identify the most common keywords and thematic clusters around the perspective of the patient, drug manufacturer and treatment reimbursement decision-maker, and the perspective integrating all the others. Since the topic of health emigration was not directly addressed in the selected sources, the authors attempted to define the related concepts and discussed the importance of this phenomenon in managing the support system in rare diseases. Thus, they indicated directions for further research in this area.

Publisher

MDPI AG

Subject

Health, Toxicology and Mutagenesis,Public Health, Environmental and Occupational Health

Reference398 articles.

1. The European Parliament and the Council (2000). Regulation

2. (EC) No 141/2000 of the European Parliament and of the Council of 16 December 1999 on Orphan Medicinal Products. Off. J. Eur. Communities, L18/1.

3. Libura, M., Władusiuk, M., Małowicka, M., Grabowska, E., Gałązka-Sobotka, M., and Gryglewicz, J. (2016). Choroby Rzadkie w Polsce: Stan Obecny i Perspektywy, Uczelnia Łazarskiego.

4. Estimating cumulative point prevalence of rare diseases: Analysis of the Orphanet database;Wakap;Eur. J. Hum. Genet.,2020

5. EURORDIS-Rare Diseases Europe (2022). High-Level Ministerial Conference: Care and Innovation Pathways for a European Rare Diseases Policy, EURORDIS-Rare Diseases Europe.

Cited by 2 articles. 订阅此论文施引文献 订阅此论文施引文献,注册后可以免费订阅5篇论文的施引文献,订阅后可以查看论文全部施引文献

1. Federated learning for rare disease detection: a survey;Rare Disease and Orphan Drugs Journal;2023-10-10

2. Rare diseases in developing countries: Insights from China's collaborative network;The International Journal of Health Planning and Management;2023-09-30

同舟云学术

1.学者识别学者识别

2.学术分析学术分析

3.人才评估人才评估

"同舟云学术"是以全球学者为主线,采集、加工和组织学术论文而形成的新型学术文献查询和分析系统,可以对全球学者进行文献检索和人才价值评估。用户可以通过关注某些学科领域的顶尖人物而持续追踪该领域的学科进展和研究前沿。经过近期的数据扩容,当前同舟云学术共收录了国内外主流学术期刊6万余种,收集的期刊论文及会议论文总量共计约1.5亿篇,并以每天添加12000余篇中外论文的速度递增。我们也可以为用户提供个性化、定制化的学者数据。欢迎来电咨询!咨询电话:010-8811{复制后删除}0370

www.globalauthorid.com

TOP

Copyright © 2019-2024 北京同舟云网络信息技术有限公司
京公网安备11010802033243号  京ICP备18003416号-3