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J Am Coll Cardiol. 2017 Dec 19;70(24):3018-3025. doi: 10.1016/j.jacc.2017.10.037.

Data Sharing and Cardiology: Platforms and Possibilities.

Author information

1
Section of Cardiovascular Medicine, Department of Internal Medicine, Yale School of Medicine, New Haven, Connecticut.
2
Section of General Internal Medicine, Department of Medicine, Yale School of Medicine, New Haven, Connecticut; Department of Health Policy and Management, Yale School of Public Health, New Haven, Connecticut; Center for Outcomes Research and Evaluation, Yale-New Haven Hospital, New Haven, Connecticut.
3
Center for Outcomes Research and Evaluation, Yale-New Haven Hospital, New Haven, Connecticut.
4
Section of Cardiovascular Medicine, Department of Internal Medicine, Yale School of Medicine, New Haven, Connecticut; Center for Outcomes Research and Evaluation, Yale-New Haven Hospital, New Haven, Connecticut.
5
Division of Cardiology, Scripps Clinic and Research Foundation, San Diego, California.
6
Section of Cardiovascular Medicine, Department of Internal Medicine, Yale School of Medicine, New Haven, Connecticut; Department of Health Policy and Management, Yale School of Public Health, New Haven, Connecticut; Center for Outcomes Research and Evaluation, Yale-New Haven Hospital, New Haven, Connecticut. Electronic address: harlan.krumholz@yale.edu.

Abstract

Sharing deidentified patient-level research data presents immense opportunities to all stakeholders involved in cardiology research and practice. Sharing data encourages the use of existing data for knowledge generation to improve practice, while also allowing for validation of disseminated research. In this review, we discuss key initiatives and platforms that have helped to accelerate progress toward greater sharing of data. These efforts are being prompted by government, universities, philanthropic sponsors of research, major industry players, and collaborations among some of these entities. As data sharing becomes a more common expectation, policy changes will be required to encourage and assist data generators with the process of sharing the data they create. Patients also will need access to their own data and to be empowered to share those data with researchers. Although medicine still lags behind other fields in achieving data sharing's full potential, cardiology research has the potential to lead the way.

KEYWORDS:

clinical trials; open science; research

PMID:
29241491
DOI:
10.1016/j.jacc.2017.10.037
[Indexed for MEDLINE]

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