Department of Biobehavioral Nursing and Health Informatics, University of Washington School of Nursing, Seattle, Washington, United States.
Department of Medicine, Weill Cornell Medicine, New York, New York, United States.
Appl Clin Inform. 2024 Oct;15(5):1013-1024. doi: 10.1055/a-2402-5832. Epub 2024 Aug 23.
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 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.
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.
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).
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.
N-of-1 试验作为一种以患者为中心的个性化方法，已经崭露头角，患者可以使用自己的数据来比较基于证据的治疗方法。然而，对于如何向患者展示与药物相关的 N-of-1 试验的个体数据，以促进决策，人们知之甚少。
我们对接受 N-of-1 试验的射血分数保留型心力衰竭患者进行了定性访谈，以迭代、完善和优化一种用于显示 N-of-1 药物试验结果的面向患者的数据可视化工具。优化该工具的目的是促进患者对自身健康信息的理解，最终促进关于继续或停止药物治疗的共同决策。
我们对 9 名参与者进行了 32 次半结构化定性访谈，这些参与者在接受 N-of-1 试验的过程中参与了试验。进行 N-of-1 试验是为了促进比较继续或停止使用β受体阻滞剂。在每个治疗期结束后，通过面对面或电话进行访谈，评估参与者对数据可视化工具原型的看法。数据由两位独立审查员使用定向内容分析进行编码，如果需要，还包括第三位审查员达成共识。提取主要主题并将其迭代纳入面向患者的数据可视化工具。
9 名参与者就可视化工具中如何显示其数据提供了反馈。经过定性分析，出现了三个主要主题，为我们的最终界面提供了信息。参与者更喜欢：（1）清楚说明个体症状评分，（2）带有标签的参考图像，以指导他们对症状信息的解释，以及（3）定性语言而不是仅用数字传达他们分数变化的含义（例如，更好，更差）。
反馈为药物相关 N-of-1 试验的面向患者的数据可视化工具的设计提供了信息。未来的工作应包括在更大范围内对该界面的可用性和理解进行测试。
