Challenges to Using Big Data in Cancer

Author:

Sweeney Shawn M.1ORCID,Hamadeh Hisham K.2ORCID,Abrams Natalie3ORCID,Adam Stacey J.4ORCID,Brenner Sara5ORCID,Connors Dana E.4ORCID,Davis Gerard J.6ORCID,Fiore Louis7ORCID,Gawel Susan H.6ORCID,Grossman Robert L.8ORCID,Hanlon Sean E.9ORCID,Hsu Karl10ORCID,Kelloff Gary J.11ORCID,Kirsch Ilan R.12ORCID,Louv Bill13ORCID,McGraw Deven14ORCID,Meng Frank15ORCID,Milgram Daniel16ORCID,Miller Robert S.17ORCID,Morgan Emily4ORCID,Mukundan Lata16ORCID,O'Brien Thomas18ORCID,Robbins Paul18ORCID,Rubin Eric H.19ORCID,Rubinstein Wendy S.5,Salmi Liz20ORCID,Schaller Teilo13ORCID,Shi George6ORCID,Sigman Caroline C.15ORCID,Srivastava Sudhir21ORCID

Affiliation:

1. 1American Association for Cancer Research, Philadelphia, Pennsylvania.

2. 2Genmab, Princeton, New Jersey.

3. 3Division of Cancer Prevention, Early Detection Research Network, National Cancer Institute, Rockville, Maryland.

4. 4Foundation for the National Institutes of Health, Bethesda, Maryland.

5. 5Office of In Vitro Diagnostics, Center for Devices and Radiological Health, U.S. Food and Drug Administration, Silver Spring, Maryland.

6. 6Abbott Diagnostics Division, Abbott Laboratories, Lake Forest, Illinois.

7. 7Boston University School of Medicine, Boston and New England Department of Veterans Affairs, Bedford, Massachusetts.

8. 8Center for Translational Data Science, The University of Chicago, Chicago, Illinois.

9. 9Center for Strategic Scientific Initiatives, National Cancer Institute, Bethesda, Maryland.

10. 10Sanofi, Bridgewater, New Jersey.

11. 11Division of Cancer Treatment and Diagnosis, National Cancer Institute, Bethesda, Maryland.

12. 12Adaptive Biotechnologies, Seattle, Washington.

13. 13Project Data Sphere, Morrisville, North Carolina.

14. 14Ciitizen Platform at Invitae, San Francisco, California.

15. 15Boston University and Veterans Administration Boston Healthcare System, Boston, Massachusetts.

16. 16CCS Associates, San Jose, California.

17. 17CancerLinQ, American Society of Clinical Oncology, Alexandria, Virginia.

18. 18Pfizer, Brooklyn, New York.

19. 19Merck, New York, New York.

20. 20Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, Massachusetts.

21. 21Cancer Biomarkers Research Group, Division of Cancer Prevention, National Cancer Institute, Rockville, Maryland.

Abstract

AbstractBig data in healthcare can enable unprecedented understanding of diseases and their treatment, particularly in oncology. These data may include electronic health records, medical imaging, genomic sequencing, payor records, and data from pharmaceutical research, wearables, and medical devices. The ability to combine datasets and use data across many analyses is critical to the successful use of big data and is a concern for those who generate and use the data. Interoperability and data quality continue to be major challenges when working with different healthcare datasets. Mapping terminology across datasets, missing and incorrect data, and varying data structures make combining data an onerous and largely manual undertaking. Data privacy is another concern addressed by the Health Insurance Portability and Accountability Act, the Common Rule, and the General Data Protection Regulation. The use of big data is now included in the planning and activities of the FDA and the European Medicines Agency. The willingness of organizations to share data in a precompetitive fashion, agreements on data quality standards, and institution of universal and practical tenets on data privacy will be crucial to fully realizing the potential for big data in medicine.

Funder

Foundation for the National Institutes of Health

Publisher

American Association for Cancer Research (AACR)

Subject

Cancer Research,Oncology

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