ArticleJournal of the American Medical Informatics Association : JAMIA2023
Patient and researcher stakeholder preferences for use of electronic health record data: a qualitative study to guide the design and development of a platform to honor patient preferences.
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 8 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
8 citing papers in PubMed.
- Exploring patient motivations and preferences for medical data sharing with researchers: a simulation study using the iAgree platform.Journal of the American Medical Informatics Association : JAMIA · 2026Article
- Article
- U.S. Vietnamese Parents' Perceptions of Different Approaches for Confirming Adolescent HPV Vaccination Records in Research Studies.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Collaborative coding in inductive content analysis: Why, when, and how to do it.Journal of genetic counseling · 2025Article
- Ethical Dimensions of Clinical Data Sharing by U.S. Health Care Organizations for Purposes beyond Direct Patient Care: Interviews with Health Care Leaders.Applied clinical informatics · 2025Article
- "I Just Assumed This Was Already Being Done": Canadian Patient Preferences for Enhanced Data Sharing for Precision Oncology.JCO precision oncology · 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
- Physicians' Perspectives on HL7 Information Policy Sensitive Value Set: A Validation Study through Health Concept Categorization.Healthcare (Basel, Switzerland) · 2023Article
Corrections and comments
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Authors and funding
8 authors.
Funding
Abstract
objectiveThis qualitative study aimed to understand patient and researcher perspectives regarding consent and data-sharing preferences for research and a patient-centered system to manage consent and data-sharing preferences. MATERIALS AND
methodsWe conducted focus groups with patient and researcher participants recruited from three academic health centers via snowball sampling. Discussions focused on perspectives on the use of electronic health record (EHR) data for research. Themes were identified through consensus coding, starting from an exploratory framework.
resultsWe held two focus groups with patients (n = 12 patients) and two with researchers (n = 8 researchers). We identified two patient themes (1-2), one theme common to patients and researchers (3), and two researcher themes (4-5). Themes included (1) motivations for sharing EHR data, (2) perspectives on the importance of data-sharing transparency, (3) individual control of personal EHR data sharing, (4) how EHR data benefits research, and (5) challenges researchers face using EHR data. DISCUSSION: Patients expressed a tension between the benefits of their data being used in studies to benefit themselves/others and avoiding risk by limiting data access. Patients resolved this tension by acknowledging they would often share their data but wanted greater transparency on its use. Researchers expressed concern about incorporating bias into datasets if patients opted out.
conclusionsA research consent and data-sharing platform must consider two competing goals: empowering patients to have more control over their data and maintaining the integrity of secondary data sources. Health systems and researchers should increase trust-building efforts with patients to engender trust in data access and use.
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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.