Liberating health data for clinical research applications

Science Translational Medicine

Volumn 2, Issue 18, 2010, Pages

  Nadler, Jessica J ^a   Downing, Gregory J ^a  

^a Department of Health and Human Services   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

ACCESS TO INFORMATION; CLINICAL RESEARCH; DECISION SUPPORT SYSTEM; EVIDENCE BASED MEDICINE; HEALTH CARE POLICY; HEALTH CARE PRACTICE; HEALTH CARE QUALITY; INFORMATION DISSEMINATION; KNOWLEDGE DISCOVERY; MEDICAL INFORMATION; MEDICAL RECORD; NOTE; PATIENT CARE; PRIORITY JOURNAL; PROCESS DEVELOPMENT;

BIOMEDICAL RESEARCH; DELIVERY OF HEALTH CARE; ELECTRONIC HEALTH RECORDS; HEALTH POLICY; MEDICAL INFORMATICS; ORGANIZATIONAL INNOVATION;

EID: 77952977592     PISSN: 19466234     EISSN: 19466242     Source Type: Journal    
DOI: 10.1126/scitranslmed.3000764     Document Type: Note

References (25)

1. L. M. Etheredge, A rapid-learning health system. Health Aff. (Millwood) 26, w107-w118 (2007).
2. L. Olsen, D. Aisner, J. M. McGinnis, The Learning Healthcare System: Workshop Summary, Institute of Medicine, Roundtable on Evidence-Based Medicine (National Academies Press, Washington, DC, 2007).
3. R. D. Atkinson, S. M. Andes, in The Atlantic Century: Benchmarking EU & U.S. Innovation and Competitiveness (The Information Technology and Innovation Foundation, Washington, DC, 2009), pp. 17-28.
4. American Recovery and Reinvestment Act (U.S. Congress, 2009).
5. D. Blumenthal, Stimulating the adoption of health information technology. N. Engl. J. Med. 360, 1477-1479 (2009).
6. International Communications Satellite Systems Conference Committee, IEEE Standard Computer Dictionary: A Compilation of IEEE Standard Computer Glossaries, 610 (Institute of Electrical and Electronics Engineers, New York, 1990).
7. A. J. McMurry, C. A. Gilbert, B. Y. Reis, H. C. Chueh, I. S. Kohane, K. D. Mandl, A self-scaling, distributed information architecture for public health, research, and clinical care. J. Am. Med. Inform. Assoc. 14, 527-533 (2007).
8. M. D. Greenberg, M. S. Ridgely, R. J. Hillestad, Crossed wires: How yesterday's privacy rules might undercut tomorrow's nationwide health information network. Health Aff. (Millwood) 28, 450-452 (2009).
9. Healthcare Information Technology Standards Panel (HITSP), HITSP Clinical Research Interoperability Specification (HITSP, New York, 2010).
10. International Health Terminology Standards Development Organisation (http://www.ihtsdo.org/about-ihtsdo).
11. Office for Human Research Protections (OHRP), International Compilation of Human Research Protections (OHRP, U.S. Department of Health and Human Services, Rockville, MD, 2010).
12. Innovative Medicines Initiative 2009 available at http://imi.europa.eu/ docs/imi-ju-2009-call-topics-14092009-en.pdf).
13. National Cancer Research Institute Oncology Information Exchange (http://www.ncri-onix.org.uk/portal/#S1).
14. BioGrid Australia (http://www.biogrid.org.au/).
15. G. S. Ginsburg, H. F. Willard, Genomic and personalized medicine: Foundations and applications. Transl. Res. 154, 277-287 (2009).
16. S. Murphy, S. Churchill, L. Bry, H. Chueh, S. Weiss, R. Lazarus, Q. Zeng, A. Dubey, V. Gainer, M. Mendis, J. Glaser, I. Kohane, Instrumenting the health care enterprise for discovery research in the genomic era. Genome Res. 19, 1675-1681 (2009).
17. M. J. Khoury, M. Gwinn, P. W. Yoon, N. Dowling, C. A. Moore, L. Bradley, The continuum of translation research in genomic medicine: How can we accelerate the appropriate integration of human genome discoveries into health care and disease prevention? Genet. Med. 9, 665-674 (2007).
18. F. H. Wehbe, S. H. Brown, P. P. Massion, C. S. Gadd, D. R. Masys, C. F. Aliferis, A novel information retrieval model for high-throughput molecular medicine modalities. Cancer Inform. 8, 1-17 (2009).
19. L. Hinman, B. Spear, Z. Tsuchihashi, J. Kelly, P. Bross, F. Goodsaid, F. Kalush, Drug-diagnostic codevelopment strategies: FDA and industry dialog at the 4th FDA/DIA/PhRMA/PWG/BIO Pharmacogenomics Workshop. Pharmacogenomics 10, 127-136 (2009).
20. S. E. Taube, G. M. Clark, J. E. Dancey, L. M. McShane, C. C. Sigman, S. I. Gutman, A perspective on challenges and issues in biomarker development and drug and biomarker codevelopment. J. Natl. Cancer Inst. 101, 1453-1463 (2009).
21. G. J. Downing, S. N. Boyle, K. M. Brinner, J. A. Osheroff, Information management to enable personalized medicine: Stakeholder roles in building clinical decision support. BMC Med. Inform. Decis. Mak. 9, 44 (2009).
22. A. Wright, D. F. Sittig, SANDS: An architecture for clinical decision support in a National Health Information Network. AMIA Annu. Symp. Proc. 816-820 (2007).
23. K. H. Buetow, J. Niederhuber, Infrastructure for a learning health care system: CaBIG. Health Aff. (Millwood) 28, 923-924, author reply 924-925 (2009).
24. PatientsLikeMe (http://www.patientslikeme.com/).
25. Army of Women (http://www.armyofwomen.org/).