JMIR Publications

ABSTRACT

Background:

Women diagnosed with breast cancer are often bombarded with information about illness and treatment. Such information overload can lead to misunderstandings and hamper women’s capacities to make informed decisions about their care. For women with breast cancer, this uncertainty is particularly acute in the period prior to surgery. Personalized narratives about others’ experiences can help patients better understand the disease course, quality and type of care to be expected, and clinical decision-making processes, as well as strategies for coping. Existing resources and eHealth applications 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 patient-centered solutions in this area.

Objective:

To design and pilot a mobile application that will improve information access about surgery for breast cancer patients, drawing on a qualitative collection of personal narratives from a diverse sample of Canadian women and using video/audio recording (published on www.healthexperiences.ca).

Methods:

In a previous study, we conducted in-depth interviews with 36 women using video/audio recording to collect Canadian stories about lived experiences of breast cancer. Participants highlighted the need for more specific information between diagnosis and surgery relevant to their personal situation and preferences. They also wanted to learn from other women’s experiences. We have worked with patients, clinicians, and informatics experts to develop a mobile application that provides access to tailored experiential information relevant to women’s personal situations and preferences. We completed focus groups and qualitative interviews, conducted further analysis of the original qualitative data, designed novel software, and evaluated a pilot application using focus groups and the e-Health Impact Questionnaire (eHIQ).

Results:

Secondary analysis of the breast cancer narratives revealed key themes, and their interconnections relevant to the experience of surgery, including: preparation, treatment decisions, impact on life, after care, reconstruction, prostheses, lumpectomy and mastectomy, and complications. These themes informed the development of the structure and content for the application. We developed a recommender system within the app using content-matching (user and speaker profiles; user interests and video content), as well as collaborative filtering, to identify clips marked as relevant by the user and by similar users. Key messages from clinical experts and patient experiences were synthesized into a two-minute animated introductory video for users. Pilot testing revealed generally positive responses regarding the content and value of this type of e-tool.

Conclusions:

Developing reliable, evidence-based tools and electronic applications that are based on diverse collections of other peoples’ experiences of illness offers a novel approach to help manage the plethora of information women face soon after a diagnosis of breast cancer. Clinical Trial: NA