Patient-Initiated Data: Our Experience with Enabling Patients to Initiate Incorporation of Heart Rate Data into the Electronic Health RecordFunding This work was funded in part through a research award from Cedars-Sinai Precision Health. J.P. was supported by the National Institute on Aging, United States of the National Institutes of Health, United States under award K23AG049181. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.
Background Provider organizations increasingly allow incorporation of patient-generated data into electronic health records (EHRs). In 2015, we began allowing patients to upload data to our EHR without physician orders, which we henceforth call patient-initiated data (PAIDA). Syncing wearable heart rate monitors to our EHR allows for uploading of thousands of heart rates per patient per week, including many abnormally low and high rates. Physician informaticists expressed concern that physicians and their patients might be unaware of abnormal heart rates, including those caused by treatable pathology.
Objective This study aimed to develop a protocol to address millions of unreviewed heart rates.
Methods As a quality improvement initiative, we assembled a physician informaticist team to meet monthly for review of abnormally low and high heart rates. By incorporating other data already present in the EHR, lessons learned from reviewing records over time, and from contacting physicians, we iteratively refined our protocol.
Results We developed (1) a heart rate visualization dashboard to identify concerning heart rates; (2) experience regarding which combinations of heart rates and EHR data were most clinically worrisome, as opposed to representing artifact; (3) a protocol whereby only concerning heart rates would trigger a cardiologist review revealing protected health information; and (4) a generalizable framework for addressing other PAIDA.
Conclusion We expect most PAIDA to eventually require systematic integration and oversight. Our governance framework can help guide future efforts, especially for cases with large amounts of data and where abnormal values may represent concerning but treatable pathology.
Protection of Human and Animal Subjects
The study was approved by Cedars-Sinai Institutional Review Board.
Received: 24 March 2020
Accepted: 05 August 2020
14 October 2020 (online)
© 2020. Thieme. All rights reserved.
Georg Thieme Verlag KG
Stuttgart · New York
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