Evidence map›Paper›PMID 37860921›Full record

ArticleJournal of the American Medical Informatics Association : JAMIA2024

Participant-guided development of bilingual genomic educational infographics for Electronic Medical Records and Genomics Phase IV study.

Aimiel Casillan, Michelle E Florido, Jamie Galarza-Cornejo, Suzanne Bakken, John A Lynch, Wendy K Chung, Kathleen F Mittendorf, Eta S Berner, John J Connolly, Chunhua Weng and 7 more

Abstract read
In one paragraph

Article in Journal of the American Medical Informatics Association : JAMIA, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.

0numbers the graph read from it
0cells of the map it votes in
3citing 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

3 citing papers in PubMed.

  1. Designing visual hierarchies for the communication of health data.Journal of the American Medical Informatics Association : JAMIA · 2024
    Article
  2. Celebrating Eta Berner and her influence on biomedical and health informatics.Journal of the American Medical Informatics Association : JAMIA · 2024
    Article
  3. Advancing the science of visualization of health data for lay audiences.Journal of the American Medical Informatics Association : JAMIA · 2024
    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

17 authors.

Aimiel CasillanGenetic Counseling Graduate Program, Vagelos College of Physicians and Surgeons, Columbia University, New York, NY 10032, United States.ORCID 0000-0002-1537-6874
Michelle E FloridoGenetic Counseling Graduate Program, Vagelos College of Physicians and Surgeons, Columbia University, New York, NY 10032, United States.
Jamie Galarza-CornejoDepartment of Pediatrics, Columbia University Irving Medical Center, New York, NY 10032, United States.
Suzanne BakkenDepartment of Nursing Scholarship and Research, School of Nursing, Columbia University Irving Medical Center, New York, NY 10032, United States.ORCID 0000-0001-6202-6001
John A LynchDepartment of Communication, School of Communication, Film, and Media Studies, University of Cincinnati, Cincinnati, OH 45221, United States.ORCID 0000-0001-6457-620X
Wendy K ChungDepartment of Pediatrics, Columbia University Irving Medical Center, New York, NY 10032, United States.
Kathleen F MittendorfVanderbilt-Ingram Cancer Center, Vanderbilt University Medical Center, Nashville, TN 37232, United States.
Eta S BernerDepartment of Health Services Administration, School of Health Professions, University of Alabama at Birmingham, Birmingham, AL 35294, United States.ORCID 0000-0003-4319-2949
John J ConnollyCenter for Applied Genomics, Children's Hospital of Philadelphia, Philadelphia, PA 19104, United States.
Chunhua WengDepartment of Biomedical Informatics, Columbia University Irving Medical Center, New York, NY 10032, United States.ORCID 0000-0002-9624-0214
Ingrid A HolmDivision of Genetics and Genomics and Manton Center for Orphan Diseases Research, Boston Children's Hospital, Boston, MA 02115, United States.
Atlas KhanDepartment of Medicine, Columbia University Irving Medical Center, New York, NY 10032, United States.
Krzysztof KirylukDepartment of Medicine, Division of Nephrology, Vagelos College of Physicians & Surgeons, Columbia University, New York, NY 10032, United States.
Nita A LimdiDepartment of Neurology, Heersink School of Medicine, University of Alabama at Birmingham, Birmingham, AL 35233, United States.
Lynn PetukhovaDepartment of Epidemiology, Columbia Mailman School of Public Health, New York, NY 10032, United States.
Maya SabatelloDepartment of Medicine, Center for Precision Medicine and Genomics, Columbia University Irving Medical Center, New York, NY 10032, United States.ORCID 0000-0003-4444-5389
Julia WynnGenetic Counseling Graduate Program, Vagelos College of Physicians and Surgeons, Columbia University, New York, NY 10032, United States.

Funding

Clinical and Translational Science AwardUL1TR001873 · NCATS · COLUMBIA UNIVERSITY HEALTH SCIENCES · PI REILLY, MUREDACH P · 2016 to 2025
$99.0M
National Dissemination of I-Corps@NCATS: Accelerating Translation through CommercializationUL1TR003096 · NCATS · UNIVERSITY OF ALABAMA AT BIRMINGHAM · PI GUTIERREZ, ORLANDO M, KIMBERLY, ROBERT P. · 2019 to 2023
$43.6M
OMOP information model for eMERGE phenotypingU01HG008680 · NHGRI · COLUMBIA UNIVERSITY HEALTH SCIENCES · PI Wendy K Chung, GEORGE M HRIPCSAK · 2015 to 2026
$13.3M
Utilizing Polygenic Risk to Understand and Improve Outcomes: A Model For Overturning Health Disparities Through Minority-Enriched Genomics HealthcareU01HG011175 · NHGRI · CHILDREN'S HOSP OF PHILADELPHIA · PI Hakon Hakonarson · 2020 to 2026
$10.3M
Integrating Genomic Risk Assessment for Disease Management in a Clinical PopulationU01HG011167 · NHGRI · UNIVERSITY OF ALABAMA AT BIRMINGHAM · PI JAMES J CIMINO, NITA A LIMDI · 2020 to 2026
$9.3M
Polygenic Risk Scores for Healthier African American FamiliesU01HG011172 · NHGRI · CINCINNATI CHILDRENS HOSP MED CTR · PI Leah Claire Kottyan, LISA J MARTIN · 2020 to 2026
$7.2M
Identification of biologically relevant subtypes of hidradenitis suppurativaK01AR075111 · NIAMS · NEW YORK UNIVERSITY SCHOOL OF MEDICINE · PI PETUKHOVA, LYNN · 2020 to 2024
$534k
NCATS NIH HHS UL1 TR001873NCATS NIH HHS UL1 TR003096NHGRI NIH HHS 2U01 HG008680-05NHGRI NIH HHS U01 HG011167NHGRI NIH HHS U01 HG011172NHGRI NIH HHS U01 HG011175NIAMS NIH HHS K01 AR075111NIAMS NIH HHS K01-AR075111NIH HHSNIH HHS UL1TR001873
6 · The paper itself

Abstract

objectiveDeveloping targeted, culturally competent educational materials is critical for participant understanding of engagement in a large genomic study that uses computational pipelines to produce genome-informed risk assessments. MATERIALS AND

methodsGuided by the Smerecnik framework that theorizes understanding of multifactorial genetic disease through 3 knowledge types, we developed English and Spanish infographics for individuals enrolled in the Electronic Medical Records and Genomics Network. Infographics were developed to explain concepts in lay language and visualizations. We conducted iterative sessions using a modified "think-aloud" process with 10 participants (6 English, 4 Spanish-speaking) to explore comprehension of and attitudes towards the infographics.

resultsWe found that all but one participant had "awareness knowledge" of genetic disease risk factors upon viewing the infographics. Many participants had difficulty with "how-to" knowledge of applying genetic risk factors to specific monogenic and polygenic risks. Participant attitudes towards the iteratively-refined infographics indicated that design saturation was reached. DISCUSSION: There were several elements that contributed to the participants' comprehension (or misunderstanding) of the infographics. Visualization and iconography techniques best resonated with those who could draw on prior experiences or knowledge and were absent in those without. Limited graphicacy interfered with the understanding of absolute and relative risks when presented in graph format. Notably, narrative and storytelling theory that informed the creation of a vignette infographic was most accessible to all participants.

conclusionEngagement with the intended audience who can identify strengths and points for improvement of the intervention is necessary to the development of effective infographics.

Indexed as

Data VisualizationElectronic Health RecordsCommunicationGenomicsHealth EducationHumansgenomic literacyhealth literacyinfographics and visualizationparticipatory design

Identifiers

PMID37860921
PMCPMC10797276

What OpenQuestion holds

Textmetadata
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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.