Empowering quality data - the Gordian knot of bringing real innovation into healthcare system

Denis Horgan, Yosr Hamdi, Jonathan A. Lal, Teresia Nyawira, Salomé Meyer, Dominique Kondji, Ngiambudulu M. Francisco, Roselle De Guzman, Anupriya Paul, Krishna Reddy Nallamalla, Woong Yang Park, Vijay Triapthi, Ravikant Tripathi, Amber Johns, Mohan P. Singh, Maude E. Phipps, France Dube, Hadi Mohamad Abu Rasheed, Marta Kozaric, Joseph A. PintoStephen Doral Stefani, Maria Eugenia Aponte Rueda, Ricardo Fujita Alarcon, Hugo A. Barrera-Saldana

Research output: Contribution to journalArticleResearchpeer-review

1 Citation (Scopus)

Abstract

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.

Original languageEnglish
Pages (from-to)140-157
Number of pages18
JournalDiagnosis
Volume10
Issue number2
DOIs
Publication statusPublished - May 2023

Keywords

  • cancer
  • empowerment
  • health data
  • infrastructure
  • personalized medicine
  • policy framework
  • public trust
  • real world evidence

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