ArticleJournal of general internal medicine2015
Designing a patient-centered user interface for access decisions about EHR data: implications from patient interviews.
Article in Journal of general internal medicine, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT01862133 (Aspiring to Awesome- Patient Preference Privacy Selections in EMR), which is not on this map. Cited by 36 papers, 3 of them syntheses that pooled it.
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.
Aspiring to Awesome- Patient Preference Privacy Selections in EMR
Who cites it
36 citing papers in PubMed, 3 syntheses or guidelines pooled it.
- Patient and Public Willingness to Share Personal Health Data for Third-Party or Secondary Uses: Systematic Review.Journal of medical Internet research · 2024Pooled it
- State of the art and a mixed-method personalized approach to assess patient perceptions on medical record sharing and sensitivity.Journal of biomedical informatics · 2020Pooled it
- Patient Portals Facilitating Engagement With Inpatient Electronic Medical Records: A Systematic Review.Journal of medical Internet research · 2019Pooled it
- Article
- Using Medication Management Technologies in Swiss Primary Care: Mixed Methods Study.Journal of medical Internet research · 2025Article
- The Impact of Trust and the Role of the Opt-Out Mechanism in Willingness to Share Health Data via Electronic Health Records in Germany: Telephone Survey Study.JMIR human factors · 2025Article
- Experiences of Older Mental Health Patients and Their Care Partners Using a Proxy Account to Access Open Notes: Qualitative Interview Study.JMIR aging · 2025Article
- Collection and sharing of health information in mental health and related systems in Australia: perspectives of people who access mental health services.BMC psychiatry · 2024Article
- Supporting Patients in Managing Electronic Health Records and Biospecimens Consent for Research: Insights from a Mixed-Methods Usability Evaluation of the iAGREE Portal.AMIA ... Annual Symposium proceedings. AMIA Symposium · 2024Article
- Patients' and Members of the Public's Wishes Regarding Transparency in the Context of Secondary Use of Health Data: Scoping Review.Journal of medical Internet research · 2023Article
- Public Deliberation Process on Patient Perspectives on Health Information Sharing: Evaluative Descriptive Study.JMIR cancer · 2022Article
- Practices and Attitudes of Bavarian Stakeholders Regarding the Secondary Use of Health Data for Research Purposes During the COVID-19 Pandemic: Qualitative Interview Study.Journal of medical Internet research · 2022Article
- Behavioral Health Professionals' Perceptions on Patient-Controlled Granular Information Sharing (Part 1): Focus Group Study.JMIR mental health · 2022Article
- Behavioral Health Professionals' Perceptions on Patient-Controlled Granular Information Sharing (Part 2): Focus Group Study.JMIR mental health · 2022Article
- Mental health professional perspectives on health data sharing: Mixed methods study.Health informatics journal · 2020Article
- Mental health professionals' perceptions on patients control of data sharing.Health informatics journal · 2020Article
- Pilot evaluation of sensitive data segmentation technology for privacy.International journal of medical informatics · 2020Article
- Patient Privacy Perspectives on Health Information Exchange in a Mental Health Context: Qualitative Study.JMIR mental health · 2019Article
- Perceptions and Preferences About Granular Data Sharing and Privacy of Behavioral Health Patients.Studies in health technology and informatics · 2019Article
- Secure Sharing of mHealth Data Streams through Cryptographically-Enforced Access Control.Smart health (Amsterdam, Netherlands) · 2019Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors.
Funding
Abstract
backgroundElectronic health records change the landscape of patient data sharing and privacy by increasing the amount of information collected and stored and the number of potential recipients. Patients desire granular control over who receives what information in their electronic health record (EHR), but there are no current patient interfaces that allow them to record their preferences for EHR access.
objectiveOur aim was to derive the user needs of patients regarding the design of a user interface that records patients' individual choices about who can access data in their EHRs.
designWe used semi-structured interviews.
settingThe study was conducted in Central Indiana.
participantsThirty patients with data stored in an EHR, the majority of whom (70 %) had highly sensitive health EHR data, were included in the study. APPROACH: We conducted a thematic and quantitative analysis of transcribed interview data. KEY
resultsPatients rarely knew what data were in their EHRs, but would have liked to know. They also wanted to be able to control who could access what information in their EHR and wanted to be notified when their data we re accessed.
conclusionsWe derived six implications for the design of a patient-centered tool to allow individual choice in the disclosure of EHR: easy patient access to their EHRs; an overview of current EHR sharing permissions; granular, hierarchical control over EHR access; EHR access controls based on dates; contextual privacy controls; and notification when their EHRs are accessed.
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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.