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Rare Disease Policy in High-Income Countries: An Overview of Achievements, Challenges, and Solutions.
Value Health
January 2025
Canadian Organization for Rare Disorders.
Objectives: To provide an overview of policy initiatives in high-income countries aimed at supporting the development and accessibility of treatments for rare diseases.
Methods: We examine how legislative, research, and pricing policies in high-income countries address barriers that have historically hindered innovation and access to rare disease treatments. By analysing examples from the EU, UK, US, Canada, Japan, and Australia, the article identifies ongoing initiatives, outlines current challenges, and explores proposed solutions to foster a sustainable, innovative, and accessible rare disease treatment ecosystem.
Health and tuberculosis systems resilience, the role of the private sector and pandemic preparedness: insights from a cross-country qualitative study with policy-makers in India, Indonesia and Nigeria.
BMJ Glob Health
January 2025
School of Public Health Sciences, University of Waterloo, Waterloo, Ontario, Canada.
Introduction: The COVID-19 pandemic was an unprecedented challenge to health systems worldwide and had a severe impact on tuberculosis (TB) case notifications and service delivery. India, Indonesia and Nigeria are high TB-burden countries where the majority of initial care-seeking happens in the private health sector. The objectives of this study were to (1) explore policy-makers' perspectives on the impact of the COVID-19 pandemic on private sector TB service delivery in India, Indonesia and Nigeria and (2) identify cross-cutting insights for pandemic preparedness with respect to TB service delivery.
View Article and Find Full Text PDFAdvancing personalized medicine: key priorities for clinical studies and funding systems based on a Europe-China collaborative Delphi survey.
Eur J Public Health
January 2025
Section of Hygiene, University Department of Life Sciences and Public Health, Università Cattolica del Sacro Cuore, Rome, Italy.
Personalized medicine (PM) has the potential to revolutionize healthcare by delivering treatments tailored to individual patients based on their unique characteristics. However, ensuring its effective implementation presents complex challenges, particularly in terms of long-term sustainability. To address these challenges, the IC2PerMed project fosters collaboration between the European Union and China.
View Article and Find Full Text PDFProfessional training of prison service workers in the Czech Republic: historical development, aspects of importance and current challenges.
Int J Prison Health (2024)
January 2025
Department of Pedagogy, AMBIS vysoká škola, a.s./ AMBIS University, Prague, Czech Republic.
Purpose: The purpose of this paper is to analyse the historical development and current challenges of professional training for prison service staff in the Czech Republic. This study focuses on the transition from a repressive system under communism to a democratic approach emphasising human rights, ethics and professionalisation. It aims to assess the effectiveness of the current training programmes and their alignment with international standards, highlighting their impact on safety, recidivism reduction and prisoner re-socialisation.
View Article and Find Full Text PDFA Unified Approach to Health Data Exchange: A Report From the US DHHS.
JAMA
January 2025
Assistant Secretary for Technology Policy/Office of the National Coordinator for Health IT, Washington, DC.
Importance: Health information technology, such as electronic health records (EHRs), has been widely adopted, yet accessing and exchanging data in the fragmented US health care system remains challenging. To unlock the potential of EHR data to improve patient health, public health, and health care, it is essential to streamline the exchange of health data. As leaders across the US Department of Health and Human Services (DHHS), we describe how DHHS has implemented fundamental building blocks to achieve this vision.
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