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A Metadata Extraction Approach for Clinical Case Reports to Enable Advanced Understanding of Biomedical Concepts

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Published on: September 20, 2018

Sharing data under the 21st Century Cures Act.

Mary A Majumder¹, Christi J Guerrini¹, Juli M Bollinger¹

¹Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas, USA.

Genetics in Medicine : Official Journal of the American College of Medical Genetics

|May 26, 2017

Summary

The 21st Century Cures Act promotes genomic data sharing for research and clinical use. While a positive step, challenges remain in data complexity, financial sustainability, and commercialization for full data utilization.

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Area of Science:

Biomedical Informatics
Health Policy
Genomic Data Science

Background:

The 21st Century Cures Act enacted in 2016 aims to advance medical research and patient care.
Key provisions support the development of an "Information Commons" for open data sharing.

Purpose of the Study:

To evaluate the impact of the 21st Century Cures Act on genomic and health data sharing.
To identify provisions that facilitate or hinder the creation of an "Information Commons".

Main Methods:

Analysis of the 21st Century Cures Act provisions related to data sharing.
Review of initiatives supported by the Act, such as the "All of Us" program.
Assessment of challenges and opportunities presented by the Act for data utilization.

Main Results:

The Act mandates data sharing and provides funding for national cohort programs like "All of Us".
It strengthens patient access to health information and automates certificates of confidentiality for research.
However, the Act introduces definitional complexities and does not address financial sustainability or commercialization scope.

Conclusions:

The 21st Century Cures Act represents a significant advancement in promoting genomic and health data sharing.
Further work is necessary to overcome implementation challenges and fully realize the Act's potential for research and clinical applications.