Evidence map›Paper›PMID 41726511›Full record

ArticleAMIA ... Annual Symposium proceedings. AMIA Symposium2024

Supporting Patients in Managing Electronic Health Records and Biospecimens Consent for Research: Insights from a Mixed-Methods Usability Evaluation of the iAGREE Portal.

Di Hu, Xi Lu, Yunan Chen, Michelle Keller, An T Nguyen, Vu Le, Tsung-Ting Kuo, Lucila Ohno-Machado, Kai Zheng

Abstract read
PubMed Full text at PMC
In one paragraph

Article in AMIA ... Annual Symposium proceedings. AMIA Symposium, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from 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.

2 · The registry

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.

3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

9 authors.

Di HuUniversity of California, Irvine, Irvine, CA, USA.
Xi LuUniversity at Buffalo, Amherst, NY, USA.
Yunan ChenUniversity of California, Irvine, Irvine, CA, USA.
Michelle KellerUniversity of Southern California, Los Angeles, CA, USA.
An T NguyenCedars-Sinai Medical Center, Los Angeles, CA, USA.
Vu LeUniversity of California, Irvine, Irvine, CA, USA.
Tsung-Ting KuoYale University, New Haven, CT, USA.
Lucila Ohno-MachadoYale University, New Haven, CT, USA.
Kai ZhengUniversity of California, Irvine, Irvine, CA, USA.

Funding

iAGREE: A Multi-Center, Networked Patient Consent StudyR01HG011066 · NHGRI · YALE UNIVERSITY · PI OHNO-MACHADO, LUCILA · 2020 to 2024
$4.2M
NHGRI NIH HHS R01 HG011066
6 · The paper itself

Abstract

De-identified health data are frequently used in research. As AI advances heighten the risk of re-identification, it is important to respond to concerns about transparency, data privacy, and patient preferences. However, few practical and user-friendly solutions exist. We developed iAGREE, a patient-centered electronic consent management portal that allows patients to set granular preferences for sharing electronic health records and biospecimens with researchers. To refine the iAGREE portal, we conducted a mixed-methods usability evaluation with 40 participants from three U.S. health systems. Our results show that the portal received highly positive usability feedback. Moreover, participants identified areas for improvement, suggested actionable enhancements, and proposed additional features to better support informed granular consent while reducing patient burden. Insights from this study may inform further improvements to iAGREE and provide practical guidance for designing patient-centered consent management tools.

Indexed as

Electronic Health RecordsInformed ConsentPatient PortalsBiomedical ResearchConfidentialityHumansPatient PreferenceUnited StatesUser-Computer Interface

Identifiers

PMID41726511
PMCPMC12919580

What OpenQuestion holds

Textmetadata
Read underepoch 390

Registered trials

None linked

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.