ArticleJournal of the American Medical Informatics Association : JAMIA2023
"I don't think it should take you three days to tell me my baby is dead." A case of fetal demise: unintended consequences of immediate release of information.
Article in Journal of the American Medical Informatics Association : JAMIA, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers, 1 of them a synthesis that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
5 citing papers in PubMed, 1 synthesis or guideline pooled it, 6 citations in OpenAlex.
- Large language models for simplifying radiology reports: a systematic review and meta-analysis of patient, public, and clinician evaluations.The Lancet. Digital health · 2026Pooled it
- Patient-Friendly Test Results and Patient-Initiated Messaging Among Adult Outpatients.JAMA network open · 2025Article
- "Everything is electronic health record-driven": the role of the electronic health record in the emergency department diagnostic process.JAMIA open · 2025Article
- Repeated Access to Patient Portal While Awaiting Test Results and Patient-Initiated Messaging.JAMA network open · 2025Article
- Timing of Liver Imaging Result Release Is Associated with Patients with Cirrhosis Reviewing Results Prior to Providers.Applied clinical informatics · 2025Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
2 authors at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
The 21st Century Cures Act (Cures Act) information blocking regulations mandate timely patient access to their electronic health information. In most healthcare systems, this technically requires immediate electronic release of test results and clinical notes directly to patients. Patients could potentially be distressed by receiving upsetting results through an electronic portal rather than from a clinician. We present a case from 2018, several years prior to the implementation of the Cures Act. A patient was notified of fetal demise detected by ultrasound through her electronic health record (EHR) patient portal before her clinician received the result. We discuss the patient's ensuing complaint and healthcare system response. This unusual and dramatic case of fetal demise is relevant today because it underscores the importance of involving a patient and family advisory council in decision-making. It also highlights the value of "anticipatory guidance" as a routine clinical practice in this era of immediate access to test results.
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What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.