JMIR Publications

ABSTRACT

Background:

Lung cancer remains the leading cause of cancer-related mortality worldwide, with low-dose computed tomography (LDCT) screening demonstrating an approximately 20% reduction in mortality among high-risk individuals. Despite this benefit, screening prevalence remains suboptimal with often less than 20% of eligible individuals reported to be up-to-date on screening. Shared decision-making is essential for effective lung cancer screening implementation, with decision aids shown to enhance patient knowledge and engagement.

Objective:

To describe the findings identified during the user-centered design of MyLungHealth, a personalized patient-facing educational tool for lung cancer screening that integrates with electronic health records.

Methods:

We employed qualitative research methods through focus groups (n=34) and individual interviews (n=18) with individuals who met screening eligibility criteria. Participants were recruited from University of Utah Health and New York University Langone Health between May and December 2023. Feedback was analyzed using Braun and Clarke’s thematic analysis principles.

Results:

Six major themes emerged from participant feedback: (1) difficulties interpreting personalized risk information, (2) varied impacts of risk information on motivation, (3) desire for autonomy and control over personal health data, (4) preference for straightforward language and multiple information formats, (5) expectations for integration with healthcare provider workflows, and (6) mixed experiences with personal health record systems. These insights led to key design modifications, including simplified risk presentation, multimodal content delivery options (video and text), and implementation of electronic health record alerts for clinicians.

Conclusions:

The user-centered design process for MyLungHealth revealed important considerations for developing effective patient education tools for lung cancer screening. Findings highlighted the need for simplified risk presentation, personalized information delivery, and integration with clinical workflows. The resulting tool was evaluated through a multi-site randomized controlled trial to assess its impact on screening rates and patient engagement.