"It attracts your eyes and brain": Refining visualizations for shared decision-making with heart failure patients.


Journal

Applied clinical informatics
ISSN: 1869-0327
Titre abrégé: Appl Clin Inform
Pays: Germany
ID NLM: 101537732

Informations de publication

Date de publication:
23 Aug 2024
Historique:
medline: 24 8 2024
pubmed: 24 8 2024
entrez: 23 8 2024
Statut: aheadofprint

Résumé

N-of-1 trials have emerged as a personalized approach to patient-centered care, where patients can compare evidence-based treatments using their own data. However, little is known about optimal methods to present individual-level data from medication-related N-of-1 trials to patients to promote decision-making. We conducted qualitative interviews with patients with heart failure with preserved ejection fraction (HFpEF) undergoing N-of-1 trials to iterate, refine, and optimize a patient-facing data visualization tool for displaying results of N-of-1 medication trials. The goal of optimizing this tool was to promote patients' understanding of their individual health information, and to ultimately facilitate shared decision-making about continuing or discontinuing their medication. We conducted 32 semi-structured qualitative interviews with 9 participants over the course of their participation in N-of-1 trials. The N-of-1 trials were conducted to facilitate a comparison of continuing versus discontinuing a beta-blocker. Interviews were conducted in-person or over the phone after each treatment period to evaluate participant perspectives on a data visualization tool prototype. Data were coded using directed content analysis by two independent reviewers and included a third reviewer to reach consensus when needed. Major themes were extracted and iteratively incorporated into the patient-facing data visualization tool. Nine participants provided feedback on how their data was displayed in the visualization tool. After qualitative analysis, three major themes emerged that informed our final interface. Participants preferred: 1) clearly stated individual symptom scores, 2) a reference image with labels to guide their interpretation of symptom information, and 3) qualitative language over numbers alone conveying the meaning of changes in their scores (e.g., better, worse). Feedback informed the design of a patient-facing data visualization tool for medication-related N-of-1 trials. Future work should include usability and comprehension testing of this interface on a larger scale.

Sections du résumé

BACKGROUND BACKGROUND
N-of-1 trials have emerged as a personalized approach to patient-centered care, where patients can compare evidence-based treatments using their own data. However, little is known about optimal methods to present individual-level data from medication-related N-of-1 trials to patients to promote decision-making.
OBJECTIVES OBJECTIVE
We conducted qualitative interviews with patients with heart failure with preserved ejection fraction (HFpEF) undergoing N-of-1 trials to iterate, refine, and optimize a patient-facing data visualization tool for displaying results of N-of-1 medication trials. The goal of optimizing this tool was to promote patients' understanding of their individual health information, and to ultimately facilitate shared decision-making about continuing or discontinuing their medication.
METHODS METHODS
We conducted 32 semi-structured qualitative interviews with 9 participants over the course of their participation in N-of-1 trials. The N-of-1 trials were conducted to facilitate a comparison of continuing versus discontinuing a beta-blocker. Interviews were conducted in-person or over the phone after each treatment period to evaluate participant perspectives on a data visualization tool prototype. Data were coded using directed content analysis by two independent reviewers and included a third reviewer to reach consensus when needed. Major themes were extracted and iteratively incorporated into the patient-facing data visualization tool.
RESULTS RESULTS
Nine participants provided feedback on how their data was displayed in the visualization tool. After qualitative analysis, three major themes emerged that informed our final interface. Participants preferred: 1) clearly stated individual symptom scores, 2) a reference image with labels to guide their interpretation of symptom information, and 3) qualitative language over numbers alone conveying the meaning of changes in their scores (e.g., better, worse).
CONCLUSIONS CONCLUSIONS
Feedback informed the design of a patient-facing data visualization tool for medication-related N-of-1 trials. Future work should include usability and comprehension testing of this interface on a larger scale.

Identifiants

pubmed: 39178891
doi: 10.1055/a-2402-5832
doi:

Types de publication

Clinical Trial Journal Article

Langues

eng

Sous-ensembles de citation

IM

Subventions

Organisme : NINR NIH HHS
ID : T32NR016913
Pays : United States
Organisme : NIA NIH HHS
ID : K76AG064428 ,R21AG077092,R24AG064025
Pays : United States

Informations de copyright

Thieme. All rights reserved.

Déclaration de conflit d'intérêts

Dr. Goyal has received consulting fees from Sensorum Health; and has received personal fees for medicolegal consulting related to heart failure.

Auteurs

Sabrina Mangal (S)

University of Washington, Seattle, United States.

Maryam Hyder (M)

Department of Medicine, Weill Cornell Medicine, New York, United States.
Program for the Care and Study of the Aging Heart, Weill Cornell Medicine, New York, United States.

Kate Zarzuela (K)

Department of Medicine, Weill Cornell Medicine, New York, United States.
Program for the Care and Study of the Aging Heart, Weill Cornell Medicine, New York, United States.

William McDonald (W)

Department of Medicine, Weill Cornell Medicine, New York, United States.

Ruth M Masterson Creber (RMM)

School of Nursing, Columbia University, New York, United States.

Ian M Kronish (IM)

Department of Medicine, Columbia University, New York, United States.

Stefan Konigorski (S)

Digital Health Cluster, Hasso Plattner Institute for Digital Engineering, University of Potsdam, Potsdam, Germany.
Hasso Plattner Institute for Digital Health at Mount Sinai, Icahn School of Medicine at Mount Sinai, New York, United States.

Mathew S Maurer (MS)

Department of Medicine, Columbia University, New York, United States.

Monika M Safford (MM)

Department of Medicine, Weill Cornell Medicine, New York, United States.

Mark S Lachs (MS)

Department of Medicine, Weill Cornell Medicine, New York, United States.

Parag Goyal (P)

Department of Medicine, Division of General Internal Medicine, Weill Cornell Medicine, New York, United States.
Program for the Care and Study of the Aging Heart, Weill Cornell Medicine, New York, United States.

Classifications MeSH