The Electronic Data Methods (EDM) Forum for Comparative Effectiveness Research (CER)

Holve, Erin; Segal, Courtney; Lopez, Marianne Hamilton; Rein, Alison; Johnson, Beth

doi:10.1097/mlr.0b013e318257a66b

Cited by 25 publications

(15 citation statements)

References 5 publications

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“…A reusable research data infrastructure can reduce costs, accelerate study start-up and patient recruitment, and ensure broader participation and generalizability in patient populations and practice characteristics. [8][9][10] The Health Information Technology for Economic and Clinical Health (HITECH) Act, part of the 2009 American Recovery and Reinvestment Act, provides a significant financial investment for deploying EHRs, which has resulted in a substantial increase in EHR implementations across a variety of practice settings. As of 2012, nearly 3 in every 4 office-based physicians in the United States used an EHR system.…”

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confidence: 99%

Building a Common Pediatric Research Terminology for Accelerating Child Health Research

et al. 2014

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Longitudinal observational clinical data on pediatric patients in electronic format is becoming widely available. A new era of multiinstitutional data networks that study pediatric diseases and outcomes across disparate health delivery models and care settings are also enabling an innovative collaborative rapid improvement paradigm called the Learning Health System. However, the potential alignment of routine clinical care, observational clinical research, pragmatic clinical trials, and health systems improvement requires a data infrastructure capable of combining information from systems and workflows that historically have been isolated from each other. Removing barriers to integrating and reusing data collected in different settings will permit new opportunities to develop a more complete picture of a patient' s care and to leverage data from related research studies. One key barrier is the lack of a common terminology that provides uniform definitions and descriptions of clinical observations and data. A well-characterized terminology ensures a common meaning and supports data reuse and integration. A common terminology allows studies to build upon previous findings and to reuse data collection tools and data management processes. We present the current state of terminology harmonization and describe a governance structure and mechanism for coordinating the development of a common pediatric research terminology that links to clinical terminologies and can be used to align existing terminologies. By reducing the barriers between clinical care and clinical research, a Learning Health System can leverage and reuse not only its own

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confidence: 99%

Building a Common Pediatric Research Terminology for Accelerating Child Health Research

et al. 2014

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“…In 2011 [14,16] and again in 2012-2013, the EDM Forum conducted a set of exploratory site visits with seven complex research and QI networks funded by AHRQ to expand the use of electronic clinical data in healthcare (see Supplementary Table 1 for a description of the awards). All of the projects included in the 2012-2013 site visits (conducted in Year 3 of the ARRA grants) also participated in the 2011 site visits (conducted in Year 1 of the ARRA grants) to enable an understanding of progress over the three year grant period.…”

Section: Methodsmentioning

confidence: 99%

Infrastructure to support learning health systems: are we there yet? Innovative solutions and lessons learned from American Recovery and Reinvestment Act CER investments

Holve

Segal

2014

J. Comp. Eff. Res.

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The 11 big health data networks participating in the AcademyHealth Electronic Data Methods Forum represent cutting-edge efforts to harness the power of big health data for research and quality improvement. This paper is a comparative case study based on site visits conducted with a subset of these large infrastructure grants funded through the Recovery Act, in which four key issues emerge that can inform the evolution of learning health systems, including the importance of acknowledging the challenges of scaling specialized expertise needed to manage and run CER networks; the delicate balance between privacy protections and the utility of distributed networks; emerging community engagement strategies; and the complexities of developing a robust business model for multi-use networks.

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“…The challenges of using data from heterogeneous sources are increasingly recognized and include selection bias, varying timeframes for updating and linking data from different source systems, lack of agreement on common data elements or coding systems, and local variations in naming and coding data elements. [6, 7, 8•]. Examples of promising approaches to overcome these challenges are evident in the electronic medical records and genomics (eMERGE) network; a collaboration that is investigating the use of EHR data linked to DNA biorepositories to identify specific associations between genotypes and human phenotypes [9•, 10].…”

Section: Ehrs As a Source Of Data For Outcomes And Comparative Effectmentioning

confidence: 99%

Leveraging EHR Data for Outcomes and Comparative Effectiveness Research in Oncology

et al. 2012

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Along with the increasing adoption of electronic health records (EHRs) are expectations that data collected within EHRs will be readily available for outcomes and comparative effectiveness research. Yet the ability to effectively share and reuse data depends on implementing and configuring EHRs with these goals in mind from the beginning. Data sharing and integration must be planned both locally as well as nationally. The rich data transmission and semantic infrastructure developed by the National Cancer Institute (NCI) for research provides an excellent example of moving beyond paper-based paradigms and exploiting the power of semantically robust, network-based systems, and engaging both domain and informatics expertise. Similar efforts are required to address current challenges in sharing EHR data.

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The Electronic Data Methods (EDM) Forum for Comparative Effectiveness Research (CER)

Cited by 25 publications

References 5 publications

Building a Common Pediatric Research Terminology for Accelerating Child Health Research

Building a Common Pediatric Research Terminology for Accelerating Child Health Research

Infrastructure to support learning health systems: are we there yet? Innovative solutions and lessons learned from American Recovery and Reinvestment Act CER investments

Leveraging EHR Data for Outcomes and Comparative Effectiveness Research in Oncology

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