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Data Acquisition, Management and Transparency

  • Arthur L. Caplan
  • Barbara K. Redman
Chapter

Abstract

Scientific practice and patient needs are rapidly accelerating the need for the interconnectivity of data and records. Fields especially active in this endeavor include genomic science, health outcomes research, developmental psychology, and neuroimaging studies, which generate and utilize large amounts of data housed on both public and private sites. Challenges in current efforts to build a more comprehensive data infrastructure include data stored in unconnected silos that are more or less accessible, data incompatibility, coding heterogeneity, and data storage and management too large for current infrastructures, especially as longitudinal data is added or links made to electronic health records or social media sites (Siu et al. 2016). Biobank policies and practices, data use and sharing, harmonization of definitions and policies to ease aggregation and comparison, and privacy regulations are under continuing development.

Keywords

Biobanking Data sharing Common data elements 

References

  1. Abbott A. Europe’s drug regulator opens vaults of clinical-trials data. Nature. 2016;538(7626):440.CrossRefPubMedGoogle Scholar
  2. Biering-Sorensen F, et al. Common data elements for spinal cord injury clinical research: a National Institute for Neurological Disorders and Stroke project. Spinal Cord. 2015;53(4):263–77.CrossRefGoogle Scholar
  3. Cohen M, Thompson C, Yates B, Zimmerman L, Pullen C. Integrating common data elements across studies to advance research. Nurs Outlook. 2015;63(2):181–8.CrossRefPubMedGoogle Scholar
  4. Cool A. Detaching data from the state: biobanking and building Big Data in Sweden. BioSocieties. 2015; epub ahead of print:1–19.Google Scholar
  5. Haring R, Henry W, Hudson M, Rodriguez E, Taualii M. Views on clinical trial recruitment, biospecimen collection, and cancer research: population science from landscapes of the Haudenosaunee (People of the Longhouse). J Cancer Educ. 2016; July 9 epub head of print.Google Scholar
  6. Mascalzoni D, et al. International Charter of principles for sharing bio-specimens and data. Eur J Hum Genet. 2016;23(6):721–8.CrossRefGoogle Scholar
  7. Siu L, et al. Facilitating a culture of responsible and effective sharing of cancer genome data. Nat Med. 2016;22(5):464–71.CrossRefPubMedPubMedCentralGoogle Scholar
  8. Thiel D, Plastt T, Platt J, King S, Kardia S. Community perspectives on public health biobanking: an analysis of community meetings on the Michigan BioTrust for Health. J Community Genet. 2014;5:125–38.CrossRefPubMedGoogle Scholar
  9. Toga A, Dinov I. Sharing big biomedical data. J Big Data. 2015;2:7.CrossRefPubMedPubMedCentralGoogle Scholar
  10. Vaught J. Biobanking comes of age: the transition to biospecimen science. Annu Rev Pharmacol Toxicol. 2016;56:211–28.CrossRefPubMedGoogle Scholar
  11. Zinner D, Pham-Kanter G, Campbell E. The changing nature of scientific sharing and withholding in academic life sciences research: Trends from national surveys I 2000 and 2013. Acad Med. 2016;91(3):433–40.CrossRefPubMedPubMedCentralGoogle Scholar

Additional Suggested Reading

  1. Cool A. Detaching data from the state: biobanking and building Big Data in Sweden. BioSocieties. 2015; epub ahead of print:1–19. (Describes reconsideration of data policies by Sweden in the wake of Big Data).Google Scholar
  2. Krumholz H. Big data and new knowledge in medicine: the thinking, training and tools needed for a learning health system. Health Aff. 2014;33(7):1163–1170. (Consolidates information from research and health care into tools for a learning health care system.) Google Scholar
  3. Metcalf J, Crawford K. Where are human subjects in Big Data research? The emerging ethics divide. Big Data Soc. 2016;1–14. (Describes growing discontinuities between data science in research and current research ethics regulation.) Google Scholar

Copyright information

© Springer International Publishing AG, part of Springer Nature 2018

Authors and Affiliations

  • Arthur L. Caplan
    • 1
  • Barbara K. Redman
    • 1
  1. 1.New York University Langone Medical CenterNew YorkUSA

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