Abstract

BackgroundWomen diagnosed with breast cancer are often bombarded with information. Such information overload can lead to misunderstandings and hamper women’s capacity for making informed decisions about their care. For women with breast cancer, this uncertainty is particularly severe in the period before surgery. Personalized narratives about others’ experiences can help patients better understand the disease course, the quality and type of care to be expected, the clinical decision-making processes, and the strategies for coping. Existing resources and eHealth apps rarely include experiential information, and no tools exist that tailor information for individual preferences and needs—offering the right information at the right time and in the right format. Combining high-quality experiential evidence with novel technical approaches may contribute to patient-centered solutions in this area.ObjectiveThis study aims to design and seek preliminary feedback on a mobile app that will improve information access about surgery for patients with breast cancer, by drawing on a qualitative collection of personal narratives from a diverse sample of Canadian women and using video and audio recordings or audio recordings from the Canadian Health Experiences Research Network.MethodsIn a previous study, we conducted in-depth interviews with 35 Canadian women and used video and audio recordings or audio recordings to collect stories about the lived experiences of breast cancer. The participants highlighted the need for more specific information between diagnosis and surgery that was relevant to their personal situations and preferences. They also wanted to learn from other women’s experiences. We worked with patients, clinicians, and informatics experts to develop a mobile app that provides access to tailored experiential information relevant to women’s personal situations and preferences. We completed focus groups and qualitative interviews, conducted a further analysis of the original qualitative data, designed novel software using artificial intelligence, and sought preliminary feedback from users on a new app via focus groups and a survey.ResultsThe secondary analysis of the breast cancer narratives revealed key themes and their interconnections relevant to the experience of surgery, including preparation, treatment decisions, aftercare, reconstruction, prostheses, lumpectomy and mastectomy, and complications. These themes informed the development of the structure and content of the app. We developed a recommender system within the app by using content matching (user and speaker profiles and user interests and video content) and collaborative filtering to identify clips marked as relevant by the user and by similar users. A 2-minute animated introductory video for users was developed. Pilot testing revealed generally positive responses regarding the content and value of this type of e-tool.ConclusionsDeveloping reliable, evidence-based tools and apps that are based on diverse collections of people’s experiences of illness offers a novel approach to help manage the plethora of information that women face after a diagnosis of breast cancer.

Highlights

  • BackgroundThe last few decades have been marked by the rapid expansion of web-based health information [1], and breast cancer has been noted as the most searched for health topic on the web [2]

  • We developed a recommender system within the app by using content matching and collaborative https://formative.jmir.org/2021/6/e22970

  • The use of recommender systems is still sparse in the health sector, it has the potential to contribute to tailored health interventions [32], and mobile apps for breast cancer could contribute to reducing information overload by offering tailored information and machine learning

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Summary

Introduction

The last few decades have been marked by the rapid expansion of web-based health information [1], and breast cancer has been noted as the most searched for health topic on the web [2] This has helped to promote the availability of relevant breast cancer information and exacerbated challenges related to information overload [3]. Tailoring information to individual needs can better support patients in their search and retrieval efforts for securing appropriate information [8]. This will reduce information overload and ensure that patients do not miss important treatment information, which is another factor that negatively impacts the health and well-being of women with breast cancer [9,10]. Combining high-quality experiential evidence with novel technical approaches may contribute to patient-centered solutions in this area

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