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      Rapid Development of Specialty Population Registries and Quality Measures from Electronic Health Record Data : An Agile Framework

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          Summary

          Background: Creation of a new electronic health record (EHR)-based registry often can be a “one-off” complex endeavor: first developing new EHR data collection and clinical decision support tools, followed by developing registry-specific data extractions from the EHR for analysis. Each development phase typically has its own long development and testing time, leading to a prolonged overall cycle time for delivering one functioning registry with companion reporting into production. The next registry request then starts from scratch. Such an approach will not scale to meet the emerging demand for specialty registries to support population health and value-based care.

          Objective: To determine if the creation of EHR-based specialty registries could be markedly accelerated by employing (a) a finite core set of EHR data collection principles and methods, (b) concurrent engineering of data extraction and data warehouse design using a common dimensional data model for all registries, and (c) agile development methods commonly employed in new product development.

          Methods: We adopted as guiding principles to (a) capture data as a byproduct of care of the patient, (b) reinforce optimal EHR use by clinicians, (c) employ a finite but robust set of EHR data capture tool types, and (d) leverage our existing technology toolkit. Registries were defined by a shared condition (recorded on the Problem List) or a shared exposure to a procedure (recorded on the Surgical History) or to a medication (recorded on the Medication List). Any EHR fields needed - either to determine registry membership or to calculate a registry-associated clinical quality measure (CQM) - were included in the enterprise data warehouse (EDW) shared dimensional data model. Extract-transform-load (ETL) code was written to pull data at defined “grains” from the EHR into the EDW model. All calculated CQM values were stored in a single Fact table in the EDW crossing all registries. Registry-specific dashboards were created in the EHR to display both (a) real-time patient lists of registry patients and (b) EDW-gener-ated CQM data. Agile project management methods were employed, including co-development, lightweight requirements documentation with User Stories and acceptance criteria, and time-boxed iterative development of EHR features in 2-week “sprints” for rapid-cycle feedback and refinement.

          Results: Using this approach, in calendar year 2015 we developed a total of 43 specialty chronic disease registries, with 111 new EHR data collection and clinical decision support tools, 163 new clinical quality measures, and 30 clinic-specific dashboards reporting on both real-time patient care gaps and summarized and vetted CQM measure performance trends.

          Conclusions: This study suggests concurrent design of EHR data collection tools and reporting can quickly yield useful EHR structured data for chronic disease registries, and bodes well for efforts to migrate away from manual abstraction. This work also supports the view that in new EHR-based registry development, as in new product development, adopting agile principles and practices can help deliver valued, high-quality features early and often.

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          Most cited references7

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          Review of 103 Swedish Healthcare Quality Registries.

          In the past two decades, an increasing number of nationwide, Swedish Healthcare Quality Registries (QRs) focusing on specific disorders have been initiated, mostly by physicians. Here, we describe the purpose, organization, variables, coverage and completeness of 103 Swedish QRs.
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            Caring for High-Need, High-Cost Patients - An Urgent Priority.

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              Use of 13 disease registries in 5 countries demonstrates the potential to use outcome data to improve health care's value.

              As health care systems worldwide struggle with rising costs, a consensus is emerging to refocus reform efforts on value, as determined by the evaluation of patient outcomes relative to costs. One method of using outcome data to improve health care value is the disease registry. An international study of thirteen registries in five countries (Australia, Denmark, Sweden, the United Kingdom, and the United States) suggests that by making outcome data transparent to both practitioners and the public, well-managed registries enable medical professionals to engage in continuous learning and to identify and share best clinical practices. The apparent result: improved health outcomes, often at lower cost. For example, we calculate that if the United States had a registry for hip replacement surgery comparable to one in Sweden that enabled reductions in the rates at which these surgeries are performed a second time to replace or repair hip prostheses, the United States would avoid $2 billion of an expected $24 billion in total costs for these surgeries in 2015.
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                Author and article information

                Journal
                Methods of Information in Medicine
                Methods Inf Med
                Georg Thieme Verlag KG
                0026-1270
                2511-705X
                January 31 2018
                2017
                January 31 2018
                2017
                : 56
                : S 01
                : e74-e83
                Article
                10.3414/ME16-02-0031
                5608102
                28930362
                ff654ba7-45f2-4977-905c-fc73fb50ce87
                © 2017
                History

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