Developing a data infrastructure for a learning health system: The PORTAL network

Journal of the American Medical Informatics Association

Volumn 21, Issue 4, 2014, Pages 596-601

  McGlynn, Elizabeth A ^a   Lieu, Tracy A ^b   Durham, Mary L ^c   Bauck, Alan ^c   Laws, Reesa ^c   Go, Alan S ^b   Chen, Jersey ^d   Feigelson, Heather Spencer ^e   Corley, Douglas A ^b   Young, Deborah Rohm ^f   Nelson, Andrew F ^g   Davidson, Arthur J ^h   Morales, Leo S ⁱ   Kahn, Michael G ^j,k  

^a KAISER PERMANENTE   (United States)

^b DIVISION OF RESEARCH   (United States)

^c CENTER FOR HEALTH RESEARCH   (United States)

^d Mid Atlantic Permanente Research Institute   (United States)

^e Kaiser Permanente Colorado   (United States)

^f Department of Research and Evaluation Kaiser Permanente Southern California ^*  (United States)

^g HEALTHPARTNERS INSTITUTE   (United States)

^h DENVER PUBLIC HEALTH   (United States)

ⁱ GROUP HEALTH RESEARCH INSTITUTE   (United States)

^j Nutrition Obesity Research Center at the University of Colorado   (United States)

^k NMR Metabolomics Core of Colorado Clinical Translational Science Institute   (United States)

more..

Author keywords

[No Author keywords available]

Indexed keywords

ARTICLE; CLINICAL PRACTICE; CLINICAL RESEARCH; CLINICAL TRIAL (TOPIC); COLORECTAL CANCER; COMPARATIVE EFFECTIVENESS; CONGENITAL HEART DISEASE; DIABETES MELLITUS; DISEASE SEVERITY; HEALTH CARE DELIVERY; HEALTH CARE ORGANIZATION; HEALTH CARE SYSTEM; HUMAN; LEARNING; MEDICAL RESEARCH; OBESITY; PATIENT OUTCOMES RESEARCH TO ADVANCE LEARNING; SELF REPORT;

COLON CANCER; COMPARATIVE EFFECTIVENESS RESEARCH; CONGENITAL HEART DEFECTS; DATA SHARING; DISTRIBUTED DATABASES; OBESITY;

AMBULATORY CARE; COMMUNITY NETWORKS; COMPUTER COMMUNICATION NETWORKS; ELECTRONIC HEALTH RECORDS; HUMANS; INFORMATION DISSEMINATION; MEDICAL RECORD LINKAGE; OUTCOME ASSESSMENT (HEALTH CARE); PATIENT-CENTERED CARE; UNITED STATES;

EID: 84902383532     PISSN: 10675027     EISSN: 1527974X     Source Type: Journal    
DOI: 10.1136/amiajnl-2014-002746     Document Type: Article

References (26)

1. Kahn MG, Batson D, Schilling LM. Data model considerations for clinical effectiveness researchers. Med Care 2012;50(Suppl):S60-7.
2. Brown JS, Lane K, Moore K, et al. Defining and evaluating possible database models to implement the FDA Sentinel initiative. 2009. http://www.regulations.gov/contentStreamer?objectId=0900006480e6cd93&disposition=attachment&contentType=pdf (accessed 15 Feb 2014).
3. Pace WD, West DR, Valuck RJ, et al. Distributed Ambulatory Research in Therapeutics Network (DARTNet): Summary Report. 2009. http://effectivehealthcare.ahrq.gov/ehc/products/53/151/2009_0728DEcIDE_DARTNet.pdf (accessed 15 Feb 2014).
4. Brown JS, Holmes JH, Shah K, et al. Distributed health data networks: a practical and preferred approach to multi-institutional evaluations of comparative effectiveness, safety, and quality of care. Med Care 2010;48:S45-51.
5. Platt R, Davis R, Finkelstein J, et al. Multicenter epidemiologic and health services research on therapeutics in the HMO Research Network Center for Education and Research on Therapeutics. Pharmacoepidemiol Drug Saf 2001;10:373-7.
6. Anonymous. HMO Research Network. Top Tools & Materials. http://www.hmoresearchnetwork.org/en/(accessed 21 Apr 2014).
7. Anonymous. HMO Research Network-VDW Data Model. http://www.hmoresearchnetwork. org/en/Tools%20&%20Materials/VDW/(accessed 12 Feb 2014).
8. Bauck A, Bachman D, Riedlinger K, et al. Developing a Structure for Programmatic Quality Assurance Checks on the Virtual Data Warehouse [abstract]. Clinical Medicine & Research 2011;9:184.
9. Center for Quality Assessment and Improvement in Mental Health. The Patient Health Questionnaire (PHQ-9)-Overview. http://www.cqaimh.org/pdf/tool_phq9.pdf (accessed 15 Mar 2014).
10. Tan G, Jensen MP, Thornby JI, et al. Validation of the Brief Pain Inventory for chronic nonmalignant pain. J Pain 2004;5:133-7.
11. Garde S, Knaup P, Hovenga E, et al. Towards semantic interoperability for electronic health records. Methods Inf Med 2007;46:332-43.
12. Olson S, Downey AS. Sharing Clinical Research Data: Workshop Summary. The National Academies Press, 2013. http://www.nap.edu/openbook.php?record_ id=18267.
13. Institute of Medicine. Data Harmonization for Patient-Centered Clinical Research -A Workshop. Washington, DC: Institute of Medicine, 2013. http://www.iom.edu/Activities/Quality/VSRT/~/media/Files/Activity%20Files/Quality/VSRT/Data-Harmonization/VSRT-WIB-DataHarmonization.pdf (accessed 29 Jan 2014).
14. Gardner SP. Ontologies and semantic data integration. Drug Discov Today 2005;10:1001-7.
15. Kunapareddy N, Mirhaji P, Richards D, et al. Information integration from heterogeneous data sources: a semantic web approach. AMIA Annu Symp Proc 2006;2006:992.
16. Sinaci AA, Laleci Erturkmen GB. A federated semantic metadata registry framework for enabling interoperability across clinical research and care domains. J Biomed Inform 2013;46:784-94.
17. Office of the National Coordinator. Meaningful Use Stage 2. 2013. http://www.healthit.gov/policy-researchers-implementers/meaningful-use-stage-2 (accessed 15 Feb 2014).
18. Meaningful Use Regulations. http://www.healthit.gov/policy-researchersimplementers/meaningful-use-regulations (accessed 12 Feb 2014).
19. Centers for Medicare & Medicaid Services. EHR Incentive Programs: Stage 2. 2013. http://www.cms.gov/Regulations-and-Guidance/Legislation/EHRIncentivePrograms/Stage_2.html (accessed 15 Feb 2014).
20. Toh S, Platt R, Steiner JF, et al. Comparative-effectiveness research in distributed health data networks. Clin Pharmacol Ther 2011;90:883-7.
21. Brown JS, Kahn M, Toh S. Data quality assessment for comparative effectiveness research in distributed data networks. Med Care 2013;51:S22-9.
22. Kahn MG, Raebel MA, Glanz JM, et al. A pragmatic framework for single-site and multisite data quality assessment in electronic health record-based clinical research. Med Care 2012;50(Suppl):S21-9.
23. Kahn MG. Data Quality Collaborative. Data Quality Collaborative. 2012. http://repository.academyhealth.org/dqc/(accessed 15 Feb 2014).
24. De Moor JS, Mariotto AB, Parry C, et al. Cancer survivors in the United States: prevalence across the survivorship trajectory and implications for care. Cancer Epidemiol Biomarkers Prev 2013;22:561-70.
25. Oster ME, Riehle-Colarusso T, Simeone RM, et al. Public health science agenda for congenital heart defects: report from a Centers for Disease Control and Prevention experts meeting. J Am Heart Assoc 2013;2:e000256.
26. CDC. 2011 National Diabetes Fact Sheet-Publications-Diabetes DDT. http://www.cdc.gov/diabetes/pubs/factsheet11.htm (accessed 12 Feb 2014).