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Appl Clin Inform 2024; 15(05): 1013-1024
DOI: 10.1055/a-2402-5832
Research Article

“It Attracts Your Eyes and Brain”: Refining Visualizations for Shared Decision-Making with Heart Failure Patients

Sabrina Mangal
1   Department of Biobehavioral Nursing and Health Informatics, University of Washington School of Nursing, Seattle, Washington, United States
,
Maryam Hyder
2   Department of Medicine, Weill Cornell Medicine, New York, New York, United States
3   Program for the Care and Study of the Aging Heart, Weill Cornell Medicine, New York, New York, United States
,
Kate Zarzuela
2   Department of Medicine, Weill Cornell Medicine, New York, New York, United States
3   Program for the Care and Study of the Aging Heart, Weill Cornell Medicine, New York, New York, United States
,
William McDonald
2   Department of Medicine, Weill Cornell Medicine, New York, New York, United States
,
Ruth M. Masterson Creber
4   Columbia University School of Nursing, New York, New York, United States
,
Ian M. Kronish
5   Department of Medicine, Columbia University, New York, New York, United States
,
Stefan Konigorski
6   Digital Health Cluster, Hasso Plattner Institute for Digital Engineering, University of Potsdam, Potsdam, Germany
7   Hasso Plattner Institute for Digital Health at Mount Sinai, Icahn School of Medicine at Mount Sinai, New York, New York, United States
,
Mathew S. Maurer
5   Department of Medicine, Columbia University, New York, New York, United States
,
Monika M. Safford
2   Department of Medicine, Weill Cornell Medicine, New York, New York, United States
,
Mark S. Lachs
2   Department of Medicine, Weill Cornell Medicine, New York, New York, United States
,
Parag Goyal
2   Department of Medicine, Weill Cornell Medicine, New York, New York, United States
3   Program for the Care and Study of the Aging Heart, Weill Cornell Medicine, New York, New York, United States
› Author Affiliations Funding P.G. is supported by National Institute on Aging grants K76AG064428 and R21AG077092. P.G. was a member of the Junior Investigator Intensive Program of the U.S. Deprescribing Research Network and is supported by a U.S. Deprescribing Research Pilot Grant, which are funded by the National Institute on Aging (R24AG064025). S.M. is supported by the National Institute of Nursing Research (T32 NR016913).
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Abstract

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 We conducted qualitative interviews with patients with heart failure with preserved ejection fraction undergoing N-of-1 trials to iterate, refine, and optimize a patient-facing data visualization tool for displaying the 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 We conducted 32 semistructured 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 β-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 a consensus when needed. Major themes were extracted and iteratively incorporated into the patient-facing data visualization tool.

Results Nine participants provided feedback on how their data were 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).

Conclusion 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.

Keywords

heart failure - data visualization - shared decision-making - symptom management

Protection of Human Subjects

The study was reviewed and approved by the Institutional Review Board at Weill Cornell Medicine.


Supplementary Material



Publication History

Received: 16 January 2024

Accepted: 22 August 2024

Accepted Manuscript online:
23 August 2024

Article published online:
27 November 2024

© 2024. Thieme. All rights reserved.

Georg Thieme Verlag KG
Rüdigerstraße 14, 70469 Stuttgart, Germany

 

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