Evidence map›Paper›PMID 29272408›Full record

ArticleJournal of the American Medical Informatics Association : JAMIA2018

Patient preferences toward an interactive e-consent application for research using electronic health records.

Christopher A Harle, Elizabeth H Golembiewski, Kiarash P Rahmanian, Janice L Krieger, Dorothy Hagmajer, Arch G Mainous, Ray E Moseley

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Journal of the American Medical Informatics Association : JAMIA, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 25 papers, 2 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
25citing papers in PubMed, 2 pooled it
–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

25 citing papers in PubMed, 2 syntheses or guidelines pooled it.

  1. Pooled it
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  11. Embedding research study recruitment within the patient portal preCheck-in.Journal of the American Medical Informatics Association : JAMIA · 2023
    Article
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  13. Review
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  16. Article
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  18. Preferences for Accessing Electronic Health Records for Research Purposes: Views of Parents Who Have a Child With a Known or Suspected Genetic Condition.Value in health : the journal of the International Society for Pharmacoeconomics and Outcomes Research · 2020
    Article
  19. Review
  20. Article
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

7 authors.

Christopher A HarleDepartment of Health Policy and Management, Indiana University, Indianapolis, IN, USA.
Elizabeth H GolembiewskiDepartment of Health Policy and Management, Indiana University, Indianapolis, IN, USA.
Kiarash P RahmanianDepartment of Community Health and Family Medicine, University of Florida, Gainesville, FL, USA.
Janice L KriegerDepartment of Advertising, University of Florida, Gainesville, FL, USA.
Dorothy HagmajerDepartment of Advertising, University of Florida, Gainesville, FL, USA.
Arch G MainousDepartment of Community Health and Family Medicine, University of Florida, Gainesville, FL, USA.
Ray E MoseleyDepartment of Community Health and Family Medicine, University of Florida, Gainesville, FL, USA.

Funding

An Interactive Patient-Centered Consent for Research Using Medical RecordsR01HD086700 · NICHD · UNIVERSITY OF FLORIDA · PI HARLE, CHRISTOPHER ALBERT, MAINOUS, ARCH G · 2015 to 2017
$1.2M
NICHD NIH HHS R01 HD086700
6 · The paper itself

Abstract

objectiveThe purpose of this study was to assess patient perceptions of using an interactive electronic consent (e-consent) application when deciding whether or not to grant broad consent for research use of their identifiable electronic health record (EHR) information. MATERIALS AND

methodsFor this qualitative study, we conducted a series of 42 think-aloud interviews with 32 adults. Interview transcripts were coded and analyzed using a modified grounded theory approach.

resultsWe identified themes related to patient preferences, reservations, and mixed attitudes toward consenting electronically; low- and high-information-seeking behavior; and an emphasis on reassuring information, such as data protections and prohibitions against sharing data with pharmaceutical companies. Participants expressed interest in the types of information contained in their EHRs, safeguards protecting EHR data, and specifics on studies that might use their EHR data. DISCUSSION: This study supports the potential value of interactive e-consent applications that allow patients to customize their consent experience. This study also highlights that some people have concerns about e-consent platforms and desire more detailed information about administrative processes and safeguards that protect EHR data used in research.

conclusionThis study contributes new insights on how e-consent applications could be designed to ensure that patients' information needs are met when seeking consent for research use of health record information. Also, this study offers a potential electronic approach to meeting the new Common Rule requirement that consent documents contain a "concise and focused" presentation of key information followed by more details.

Indexed as

broad consentCommon Rulee-consentelectronic health recordinformation systems designresearch informatics

Identifiers

PMID29272408
PMCPMC5992814

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.