Adapting Clinical Systems to Enable Adolescents' Genomic ChoicesFunding This research is part of a single site eMERGE III network project initiated and funded by the NHGRI through grant U01HG8666 (Cincinnati Children's Hospital Medical Center).
Background We offered adolescents personalized choices about the type of genetic results they wanted to learn during a research study and created a workflow to filter and transfer the results to the electronic health record (EHR).
Methods We describe adaptations needed to ensure that adolescents' results documented in the EHR and returned to adolescent/parent dyads matched their choices. A web application enabled manual modification of the underlying laboratory report data based on adolescents' choices. The final PDF format of the laboratory reports was not viewable through the EHR patient portal, so an EHR form was created to support the manual entry of discrete results that could be viewed in the portal.
Results Enabling adolescents' choices about genetic results was a labor-intensive process. More than 350 hours was required for development of the application and EHR form, as well as over 50 hours of a study professional's time to enter choices into the application and EHR. Adolescents and their parents who learned genetic results through the patient portal indicated that they were satisfied with the method of return and would make their choices again if given the option.
Conclusion Although future EHR upgrades are expected to enable patient portal access to PDFs, additional improvements are needed to allow the results to be partitioned and filtered based on patient preferences. Furthermore, separating these results into more discrete components will allow them to be stored separately in the EHR, supporting the use of these data in clinical decision support or artificial intelligence applications.
Keywordsclinical information systems - implementation and deployment - general aspects - facilitators and barriers - electronic health records and systems - patient records - specific types
Protection of Human and Animal Subjects
The study was reviewed and approved by Cincinnati Children's Hospital Medical Center's Institutional Review Board.
C.A.P., member of application and abstract form development team, developed initial manuscript and drafts. K.M., a co-inventor and consultant for Hive Networks, Inc, led application development team, critical review, and edits to all manuscript drafts. K.M. also reports research support from Amgen and consulting support from Novartis. J.N., member of application development team, led critical review and edits to manuscript drafts. M.M. led genomic implementation study for which clinical adaptations were needed, critical review, and edits to manuscript drafts. E.H. oversight of systems developed for genomic implementation study and critical review of manuscript drafts.
Received: 18 March 2020
Accepted: 15 September 2020
13 November 2020 (online)
© 2020. The Author(s). This is an open access article published by Thieme under the terms of the Creative Commons Attribution License, permitting unrestricted use, distribution, and reproduction so long as the original work is properly cited. (https://creativecommons.org/licenses/by/4.0/).
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