RESUMEN
BACKGROUND: Women 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. OBJECTIVE: This 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. METHODS: In 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. RESULTS: The 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. CONCLUSIONS: Developing 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.
RESUMEN
BACKGROUND: Practice-based population health (PBPH) management is the proactive management of patients by their primary care clinical team. The ability of clinics to engage in PBPH and the means by which they incorporate it in a clinical setting remain unknown. OBJECTIVE: We conducted the Canadian Population Health Management Challenge to determine the capacity and preparedness of primary care settings to engage in PBPH using their existing medical record systems and to understand the complexities that may exist in PBPH implementation. METHODS: We recruited a sample of electronic medical record (EMR) -enabled and paper-based clinics from across Canada to participate in the challenge. The challenge required clinic staff and physicians to complete time-controlled, evidence-based practice reviews of their patients who may benefit from evidence-informed care, treatment, or interventions across five different areas (immunization, postmyocardial infarction care, cancer screening, diabetes management, and medication recall). We formulated a preparedness index to measure the capacity of clinics to engage in PBPH management. Finally, we conducted follow-up qualitative interviews to provide richer understanding of PBPH implementation and related issues (ie, challenges and facilitators). RESULTS: A total of 11 primary care clinics participated, representing 21 clinician practices. EMR-enabled clinics completed a full review of charts in an average of 1.37 hours. On the contrary, paper-based clinics reviewed nearly 10% of their charts in an average of 3.9 hours, hinting that they would have required an estimated 40 hours to complete a review of charts in their practice. Furthermore, the index revealed a major gap in preparedness between the EMR and paper-based clinics (0.86-3.78 vs 0.05-0.12), as well as a broad range among the EMR clinics. Finally, building on the results of the qualitative analysis, we identified factors facilitating the integration of PBPH. CONCLUSIONS: Our results suggest that EMR usage is pivotal in setting the foundation to support PBPH. The wide range of performance variation among EMR-enabled clinics suggests that EMR functionality and optimization, its support of clinical practice workflow, and policy issues to ensure adoption of standards are critical issues to facilitate PBPH.