ArticleJournal of the American Medical Informatics Association : JAMIA
Don't take your EHR to heaven, donate it to science: legal and research policies for EHR post mortem.
Article in Journal of the American Medical Informatics Association : JAMIA. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 7 papers.
What it found
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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.
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Who cites it
7 citing papers in PubMed.
- Application of Bayesian networks to generate synthetic health data.Journal of the American Medical Informatics Association : JAMIA · 2021Article
- Examination and diagnosis of electronic patient records and their associated ethics: a scoping literature review.BMC medical ethics · 2020Article
- A two-site survey of medical center personnel's willingness to share clinical data for research: implications for reproducible health NLP research.BMC medical informatics and decision making · 2019Article
- Patient Data Sharing and Confidentiality Practices of Researchers in Jordan.Risk management and healthcare policy · 2019Article
- Ascertainment of Vital Status Among People With Criminal Justice Involvement Using Department of Corrections Records, the US National Death Index, and Social Security Master Death Files.American journal of epidemiology · 2017Article
- Development and validation of a classification approach for extracting severity automatically from electronic health records.Journal of biomedical semantics · 2015Article
- Piloting a deceased subject integrated data repository and protecting privacy of relatives.AMIA ... Annual Symposium proceedings. AMIA Symposium · 2014Article
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.
Funding
Abstract
Recently, an important public debate emerged about the digital afterlife of any personal data stored in the cloud. Such debate brings also to attention the importance of transparent management of electronic health record (EHR) data of deceased patients. In this perspective paper, we look at legal and regulatory policies for EHR data post mortem. We analyze observational research situations using EHR data that do not require institutional review board approval. We propose creation of a deceased subject integrated data repository (dsIDR) as an effective tool for piloting certain types of research projects. We highlight several dsIDR challenges in proving death status, informed consent, obtaining data from payers and healthcare providers and the involvement of next of kin.
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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.