e-ESAS: Evolution of a participatory design-based solution for breast cancer (BC) patients in rural Bangladesh

Abstract

Healthcare facility is scarce for rural women in the developing world. The situation is worse for patients who are suffering from diseases that require long-term feedback-oriented monitoring such as breast cancer. Lack of motivation to go to the health centers on patients' side due to sociocultural barriers, financial restrictions and transportation hazards results in inadequate data for proper assessment. Fortunately, mobile phones have penetrated the masses even in rural communities of the developing countries. In this scenario, a mobile phone-based remote symptom monitoring system (RSMS) with inspirational videos can serve the purpose of both patients and doctors. Here, we present the findings of our field study conducted on 39 breast cancer patients in rural Bangladesh. Based on the results of extensive field studies, we have categorized the challenges faced by patients in different phases of the treatment process. As a solution, we have designed, developed and deployed e-ESAS-the first mobile-based RSMS in rural context. Along with the detail need assessment of such a system, we describe the evolution of e-ESAS and the deployment results. We have included the unique and useful design lessons that we learned as e-ESAS evolved through participatory design process. The findings show how e-ESAS addresses NOT THE PUBLISHED VERSION; this is the author's final, peer-reviewed manuscript. The published version may be accessed by following the link in the citation at the bottom of the page.

Designing a reliable pain drawing tool: avoiding interaction flaws by better tailoring to patients’ impairments

“…As seen in other studies, many of these patients do not understand issues related to slow network and unreliable responses of the program [14]. Measures should be taken in order to reduce these types of problems.…”

“…To solve this issue, considerations relating to size of the screen and size of the target area should be made. The content on the screen should be based on minimalistic design in order to improve the precision and reduce the complexity of the task [14,34]. This issue should put more restraint on the interface of a mobile phone than a tablet device as seen in the development of a symptom assessment program [14].…”

“…Designing for persons with chronic pain and other distressing symptoms associated with advanced cancer represents an area with limited evidence in HCI. Recently, some studies describing empirically based design guidelines concerning this user group have been published [14,34]. In order to form a qualitative understanding of aspects that need to be taken into consideration when designing for advancedstage cancer patients, we have conducted an agile, iterative, user involving development process in which CPBM prototypes have been assessed in realistic clinical contexts of use.…”

“…Some recent studies have focused on design for cancer patients [14,26,34]. One common denominator is the patients' need for a simple interface.…”

Exploring the link between behaviour and health

“…The final paper ''e-ESAS: Evolution of a Participatory Design based Solution for Breast Cancer (BC) Patients in Rural Bangladesh'' describes the potential and challenges of pervasive health care in developing countries [7]. The authors performed a study with 39 breast cancer patients in rural Bangladesh, where the patients were equipped with low-cost mobile phones running symptom monitoring system.…”