Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2016 May;23(3):635-43.
doi: 10.1093/jamia/ocv176. Epub 2015 Dec 31.

Development of a large urban longitudinal HIV clinical cohort using a web-based platform to merge electronically and manually abstracted data from disparate medical record systems: technical challenges and innovative solutions

Alan E Greenberg  1 , Harlen Hays  2 , Amanda D Castel  3 , Thilakavathy Subramanian  2 , Lindsey Powers Happ  3 , Maria Jaurretche  3 , Jeff Binkley  2 , Mariah M Kalmin  3 , Kathy Wood  2 , Rachel Hart  2 ; DC Cohort Executive Committee
Affiliations

Development of a large urban longitudinal HIV clinical cohort using a web-based platform to merge electronically and manually abstracted data from disparate medical record systems: technical challenges and innovative solutions

Alan E Greenberg et al. J Am Med Inform Assoc. 2016 May.

Abstract

Objective: Electronic medical records (EMRs) are being increasingly utilized to conduct clinical and epidemiologic research in numerous fields. To monitor and improve care of HIV-infected patients in Washington, DC, one of the most severely affected urban areas in the United States, we developed a city-wide database across 13 clinical sites using electronic data abstraction and manual data entry from EMRs.

Materials and methods: To develop this unique longitudinal cohort, a web-based electronic data capture system (Discovere®) was used. An Agile software development methodology was implemented across multiple EMR platforms. Clinical informatics staff worked with information technology specialists from each site to abstract data electronically from each respective site's EMR through an extract, transform, and load process.

Results: Since enrollment began in 2011, more than 7000 patients have been enrolled, with longitudinal clinical data available on all patients. Data sets are produced for scientific analyses on a quarterly basis, and benchmarking reports are generated semi-annually enabling each site to compare their participants' clinical status, treatments, and outcomes to the aggregated summaries from all other sites.

Discussion: Numerous technical challenges were identified and innovative solutions developed to ensure the successful implementation of the DC Cohort. Central to the success of this project was the broad collaboration established between government, academia, clinics, community, information technology staff, and the patients themselves.

Conclusions: Our experiences may have practical implications for researchers who seek to merge data from diverse clinical databases, and are applicable to the study of health-related issues beyond HIV.

Keywords: DC Cohort; EMR; HIV; cohort; electronic medical record.

PubMed Disclaimer

Figures

Figure 1:
Figure 1:
DC Cohort organizational structure. DC PFAP EC: District of Columbia Partnership for AIDS Progress executive committee; DC Cohort PI: District of Columbia Cohort principal investigator; DSCC: Data and Statistics Coordinating Center; DC Cohort EC: DC Cohort executive committee; Site PIs: site principal investigators; GW: George Washington University; NIH: National Institutes of Health; DC DOH: District of Columbia Department of Health; Patient CAB: Patient Community Advocacy Board.
Figure 2:
Figure 2:
Overall view of agile data abstraction from EMR platforms. Gap analysis is an assessment of the EMR at each DC Cohort site EMR to determine which variables of interest to the DC Cohort can be captured electronically through the export programs, and which will need to be entered manually. Scrum master is a rugby analogy for the facilitating role that Cerner plays in the development and maintenance of the export programs through regular calls and meetings with the IT staff at each DC Cohort site. EMR: electronic medical record.
Figure 3:
Figure 3:
Typical workflow of participant data entry into Discovere and process efficiency outline. PID: participant identification number; EMR: electronic medical record.
Figure 4
Figure 4
Cumulative enrollment in the DC cohort, January 2011 through April 2015. aWithdrawn: 14 patients have withdrawn to date. bUndecided; Patients who have not yet decided whether to consent or refuse. Site staff may approach patients up to four times for consent.
See this image and copyright information in PMC

References

    1. Kurian AW, Mitani A, Desai M, et al. Breast cancer treatment across health care systems: Linking electronic medical records and state registry data to enable outcomes research. Cancer. 2014;120(1):103–111. - PMC - PubMed
    1. Choi IY, Park S, Park B, et al. Development of prostate cancer research database with the clinical data warehouse technology for direct linkage with electronic medical record system. Prostate Int. 2013;1(2):59–64. - PMC - PubMed
    1. Arous EJ, McDade TP, Smith JK, et al. Electronic medical record: research tool for pancreatic cancer? J Surg Res. 2014;187(2):466–470. - PubMed
    1. Botsis T, Hartvigsen G, Chen F, Weng C. Secondary use of EHR: data quality issues and informatics opportunities. AMIA Joint Summits on Translational Science proceedings AMIA Summit on Translational Science. 2010;2010:1. - PMC - PubMed
    1. Lau EC, Mowat FS, Kelsh MA, et al. Use of electronic medical records (EMR) for oncology outcomes research: assessing the comparability of EMR information to patient registry and health claims data. Clin Epidemiol. 2011;3(1):259–272. - PMC - PubMed

Publication types