TY - JOUR
T1 - Empowering quality data - the Gordian knot of bringing real innovation into healthcare system
AU - Horgan, Denis
AU - Hamdi, Yosr
AU - Lal, Jonathan A.
AU - Nyawira, Teresia
AU - Meyer, Salomé
AU - Kondji, Dominique
AU - Francisco, Ngiambudulu M.
AU - De Guzman, Roselle
AU - Paul, Anupriya
AU - Nallamalla, Krishna Reddy
AU - Park, Woong Yang
AU - Triapthi, Vijay
AU - Tripathi, Ravikant
AU - Johns, Amber
AU - Singh, Mohan P.
AU - Phipps, Maude E.
AU - Dube, France
AU - Abu Rasheed, Hadi Mohamad
AU - Kozaric, Marta
AU - Pinto, Joseph A.
AU - Stefani, Stephen Doral
AU - Aponte Rueda, Maria Eugenia
AU - Alarcon, Ricardo Fujita
AU - Barrera-Saldana, Hugo A.
N1 - Funding Information:
Research funding: This research received a grant from PROMISE-Personalized Medicine Inquiry-Based Education Co-funded by the Erasmus+ Programme of the European Union, Grant Agreement No. 2019-1-HR01-KA203-061010.
Publisher Copyright:
© 2022 Walter de Gruyter GmbH, Berlin/Boston.
PY - 2023/5
Y1 - 2023/5
N2 - Objectives: The introduction of Personalised Medicine (PM) into healthcare systems could benefit from a clearer understanding of the distinct national and regional frameworks around the world. Recent engagement by international regulators on maximising the use of real-world evidence (RWE) has highlighted the scope for improving the exploitation of the treasure-trove of health data that is currently largely neglected in many countries. The European Alliance for Personalised Medicine (EAPM) led an international study aimed at identifying the current status of conditions. Methods: A literature review examined how far such frameworks exist, with a view to identifying conducive factors - and crucial gaps. This extensive review of key factors across 22 countries and 5 regions revealed a wide variety of attitudes, approaches, provisions and conditions, and permitted the construction of a comprehensive overview of the current status of PM. Based on seven key pillars identified from the literature review and expert panels, the data was quantified, and on the basis of further analysis, an index was developed to allow comparison country by country and region by region. Results: The results show that United States of America is leading according to overall outcome whereas Kenya scored the least in the overall outcome. Conclusions: Still, common approaches exist that could help accelerate take-up of opportunities even in the less prosperous parts of the world.
AB - Objectives: The introduction of Personalised Medicine (PM) into healthcare systems could benefit from a clearer understanding of the distinct national and regional frameworks around the world. Recent engagement by international regulators on maximising the use of real-world evidence (RWE) has highlighted the scope for improving the exploitation of the treasure-trove of health data that is currently largely neglected in many countries. The European Alliance for Personalised Medicine (EAPM) led an international study aimed at identifying the current status of conditions. Methods: A literature review examined how far such frameworks exist, with a view to identifying conducive factors - and crucial gaps. This extensive review of key factors across 22 countries and 5 regions revealed a wide variety of attitudes, approaches, provisions and conditions, and permitted the construction of a comprehensive overview of the current status of PM. Based on seven key pillars identified from the literature review and expert panels, the data was quantified, and on the basis of further analysis, an index was developed to allow comparison country by country and region by region. Results: The results show that United States of America is leading according to overall outcome whereas Kenya scored the least in the overall outcome. Conclusions: Still, common approaches exist that could help accelerate take-up of opportunities even in the less prosperous parts of the world.
KW - cancer
KW - empowerment
KW - health data
KW - infrastructure
KW - personalized medicine
KW - policy framework
KW - public trust
KW - real world evidence
UR - http://www.scopus.com/inward/record.url?scp=85145166311&partnerID=8YFLogxK
U2 - 10.1515/dx-2022-0115
DO - 10.1515/dx-2022-0115
M3 - Article
C2 - 36548810
AN - SCOPUS:85145166311
SN - 2194-8011
VL - 10
SP - 140
EP - 157
JO - Diagnosis
JF - Diagnosis
IS - 2
ER -
