Addressing data collection challenges in ICT for development projects

This paper equips researchers for addressing a wide range of data collection challenges experienced when interacting with marginalized communities as part of ICT4D projects in developing countries. This secondary research categorizes data collection challenges reported in multiple disciplines, and summarizes the guidance from the past literature to deal with the challenges. The open, axial, and selective coding of data collection challenges reported by the past literature suggests that it is necessary to manage scope, time, cost, quality, human resources, communication, and risks for addressing the data collection challenges. This paper illustrates the ways to manage these seven dimensions using (a) the success stories of data collection in the past, (b) the lessons learned by researchers during data collection as documented by the past literature, and (c) the advice they offer for collection data from marginalized communities in developing countries

e-ESAS: Evolution of a Participatory Design-based Solution for Breast Cancer (BC) Patients in Rural Bangladesh

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 several challenges faced by patients and doctors and positively impact their lives

MOBILE BASED SYMPTOM MANAGEMENT FOR PALLIATIVE CARE

The goal of palliative care is to improve the quality of life of terminally ill patients through the management of pain and other symptoms. Though the term `palliative care\u27 is well known in the developed world, it is relatively a new term in the developing world. According to WHO, each year 4.8 million people suffering from severe pain caused by cancer, fail to receive treatment due to lack of resources and other barriers. In this thesis we have elaborated on the challenges faced by the rural breast cancer (BC) patients of Bangladesh and a solution for their palliative care treatment. Although breast cancer is commonly thought of as a disease of the developed world, the WHO statistics show that 69% of all BC deaths occur in developing countries. Unlike western countries where 89% of the women have a survival rate of more than 5 years, most BC patients in Bangladesh die because the majority of cases are diagnosed in late stages. These patients need palliative care which is almost absent in rural Bangladesh. These issues show the desperate need of a low cost palliative care system solution for the terminally ill patients of the developing world. Based on detailed field studies, we have developed and deployed a mobile based remote symptom monitoring and management system named e-ESAS. Design of e-ESAS has evolved through continuous feedback from both the patients and doctors. e-ESAS is being used by 10 breast cancer patients to submit symptom values from their home for the last 10 months (Nov\u2711- Sep \u2712). Our results show how e-ESAS with motivational videos not only helped the patients to have a `dignified\u27 life but also helped the doctors to achieve the goals of palliative care. Also the analyzed results are shown in 4 categories to appropriately measure the contribution of e-ESAS in improving the QoL. This thesis also focuses on developing a mobile based pain intensity detection tool which is a first step in replacing the manual paper based scale for measuring pain. The tool also might play a big role in assessing the pain level of verbally impaired patients

Computational Approaches for Remote Monitoring of Symptoms and Activities

We now have a unique phenomenon where significant computational power, storage, connectivity, and built-in sensors are carried by many people willingly as part of their life style; two billion people now use smart phones. Unique and innovative solutions using smart phones are motivated by rising health care cost in both the developed and developing worlds. In this work, development of a methodology for building a remote symptom monitoring system for rural people in developing countries has been explored. Design, development, deployment, and evaluation of e-ESAS is described. The system’s performance was studied by analyzing feedback from users. A smart phone based prototype activity detection system that can detect basic human activities for monitoring by remote observers was developed and explored in this study. The majority voting fusion technique, along with decision tree learners were used to classify eight activities in a multi-sensor framework. This multimodal approach was examined in details and evaluated for both single and multi-subject cases. Time-delay embedding with expectation-maximization for Gaussian Mixture Model was explored as a way of developing activity detection system using reduced number of sensors, leading to a lower computational cost algorithm. The systems and algorithms developed in this work focus on means for remote monitoring using smart phones. The smart phone based remote symptom monitoring system called e-ESAS serves as a working tool to monitor essential symptoms of patients with breast cancer by doctors. The activity detection system allows a remote observer to monitor basic human activities. For the activity detection system, the majority voting fusion technique in multi-sensor architecture is evaluated for eight activities in both single and multiple subjects cases. Time-delay embedding with expectation-maximization algorithm for Gaussian Mixture Model was studied using data from multiple single sensor cases

Tuberculosis laboratory information systems for resource-poor settings

Thesis (Ph. D.)--Harvard-MIT Division of Health Sciences and Technology, February 2009.Includes bibliographical references (p. 132-143).Multi-drug resistant tuberculosis (MDR-TB) patients in resource-poor settings experience large delays in starting appropriate drug regimens and are often not monitored appropriately due to an overburdened health care system, communication delays, and missing or error-prone data. Medical information systems can be used to alleviate these problems by increasing the timeliness and quality of laboratory information available. The research reported in this thesis developed, implemented, and evaluated two such systems in the urban, resource-poor setting of Lima, Peru in institutions with and without internet. The first part addresses the electronic collection of tuberculosis (TB) laboratory information from multiple institutions without internet. A handheld computer-based system was developed and implemented. A cluster randomized controlled trial and before-and-after comparison showed that this system had a significant effect in reducing processing times from 23 to 8 days, the proportion of cultures with delays >90 days from 9.2% to 0.1%, the number of errors by 57.1%, and the work-hours necessary to process results by 60%. A cost and timeline framework was developed to allow other organizations in resource-poor settings to implement this technology. The second part addresses a web-based system, e-Chasqui, developed to provide electronic communication and reporting of TB laboratory information to health care personnel within institutions with internet. A cluster randomized controlled trial showed that access to e-Chasqui resulted in significantly less time to receipt of test results, a 56% reduction in tests taking over 60 days to arrive and a 98% reduction of results that never arrived, as well as a significantly faster time to culture conversion among patients in intervention versus control centers.(cont.) These two parts describe verified medical informatics tools and an implementation methodology for settings both with and without internet connectivity.by Joaquin Andres Blaya.Ph.D

mHealth in Practice

This book is available as open access through the Bloomsbury Open Access programme and is available on www.bloomsburycollections.com. There has recently been an explosion of interest around the application of mobile communication technologies to support health initiatives in developing countries (mHealth). As a result, there is a need to promote and share rigorous research for better informed policy, programming, and investment. There are, however, few platforms for the exchange of information and proven practice between practitioners and researchers. The subtopic of prevention, well-being, and health promotion within mHealth is particularly ripe for deeper exploration. While many reports tout the potential of mobiles to influence behaviour change for health, there is limited knowledge about what works (and what does not work), and about how to evaluate current and future programs. This is a focused edited volume with contributions from leading researchers and practitioners to identify best practices in using mobile technologies to promote healthy behaviours (and reduce unhealthy ones) in resource-constrained settings with a special focus on developing countries. This topic is inherently interdisciplinary. Though the opportunities to leverage mobile phones for health are new, the challenges confronting researchers and practitioners are well-established and theoretically complex, with roots in decades of work on mediated behaviour change campaigns and theories

mHealth in Practice

This book is available as open access through the Bloomsbury Open Access programme and is available on www.bloomsburycollections.com. There has recently been an explosion of interest around the application of mobile communication technologies to support health initiatives in developing countries (mHealth). As a result, there is a need to promote and share rigorous research for better informed policy, programming, and investment. There are, however, few platforms for the exchange of information and proven practice between practitioners and researchers. The subtopic of prevention, well-being, and health promotion within mHealth is particularly ripe for deeper exploration. While many reports tout the potential of mobiles to influence behaviour change for health, there is limited knowledge about what works (and what does not work), and about how to evaluate current and future programs. This is a focused edited volume with contributions from leading researchers and practitioners to identify best practices in using mobile technologies to promote healthy behaviours (and reduce unhealthy ones) in resource-constrained settings with a special focus on developing countries. This topic is inherently interdisciplinary. Though the opportunities to leverage mobile phones for health are new, the challenges confronting researchers and practitioners are well-established and theoretically complex, with roots in decades of work on mediated behaviour change campaigns and theories

The effect of the inclusion of a computer-based interviewing system on patient-clinician communication during the subsequent consultation

A computer interview has been found to be valuable in eliciting information. This thesis describes the use of a CIS in two different clinical settings (GP surgery and chiropractic clinic), with the aims of aiding recognition of patients with anxiety or depression and enhancing communication between patient and clinician. The Hospital Anxiety and Depression Scale (HADS) was included in the computer interview. 60 patients used the CIS in both settings, 6 GPs and 3 chiropractors were involved in the study. A high level of acceptance of the CIS was found in patients and clinicians in both settings. 99% of patients rated the system as “easy” or “extremely easy to use”. In the GP surgery, 80% of patients felt that they were “possibly” (68.33%) or “definitely” (11.67%) more focussed for the consultation. In the chiropractic clinic, 41.7% of patients said they disclosed new information and 33.3% felt better prepared for the consultation. The CIS aided the recognition of some individuals with anxiety or depression, more so within the chiropractic clinic than in the GP surgery. The information in the interview transcript was considered more useful by the chiropractors than the GPs (85% v 21.67%); this could be partially attributable to the fact that the chiropractors added 15 reassessment questions to the question set, whilst the GPs only added 4, more general, questions. The CIS also helped to highlight communication issues and show trends within the patient populations. Although the CIS was found to be of benefit in both settings, the GPs felt that it was more appropriate for use with specific patient groups. In the chiropractic clinic, the CIS was an effective addition to the periodic patient reassessment process. It would be possible to deliver other, individualised screening interviews using the CIS, delivery of which could be enhanced using handheld devices.EThOS - Electronic Theses Online ServiceGBUnited Kingdo

Closing the digital gap: handheld computing, adult first-time users, and a user experience metric model

This thesis assesses the speed of adaptation and adoption of computing systems from an adult first-time user perspective in South Africa, with the aim of determining if it could ultimately lead to the reduction of the existing digital gap. As is evident from the social, educational, and economical gap for some observers, the reality of the existence of the digital gap in South Africa is undeniable. Constant non-targeted progress is made toward addressing imbalances, which seem to be more visible as the number of constant and permanent users is visibly increasing. These observed phenomena are mostly noticed amongst urban, educated, younger, middle-class citizens. The forgotten “missing middle” are left to fend for themselves. These are people who are still outside the digital drive the world is experiencing based on their schooling grade, geographical location, income level, and age. They were not in school when computer literacy was introduced, and they were too poor to teach themselves how to use a computer, too remote to observe the digital drive, and too old to learn from their peers. As citizens, their welfare matters, and when assessing the penetration of ICT in the country, their numbers also matter. One cannot ignore their presence and the difficulties and frustration that they experience when coming into contact with a computing system for the first time. The researcher is of the view that the presence of a computing system may not simply translate to the closure of the digital gap. In other words, people may gain access to a computer, but without computing usability skills or Internet connectivity it may not add value to their daily activities. Closing the digital gap in South Africa can be seen as political propaganda, but the reality is, how do we measure and assess it? It comes down to users, and in this particular case, attention is turned to the “missing middle”, here referred to as the adult first-time user. This is simply someone who is over the age of 18 years, lives in a rural community in South Africa, never completed school, and is using a computer for the first time. The researcher used a handheld tablet system as a tool to assess the participants’ adequacy in terms of the rate at which they complete tasks by developing mathematical equations which were placed together within an assessment metric that was later used to determine user proficiency, as well as their adaptation and user experience in order to determine if the participant can later adopt the device and take advantage of it. By so doing, the metric will comprise variables such as the user movement time, task completion success rate, task completion speed, user satisfaction, user reaction time, user completion rate per activity, time-based efficiency, and the assessment of the level of frustration any adult first-time user may experience while interacting with the system for the first time. The term “digital gap” may not be new to the ICT sphere, but no one has taken the step towards assessing it. The digital gap is no longer the absence of computing systems in many communities but rather the presence of inadequate user experience, which has not been properly measured and documented. The user experience metric (UXM) that was developed in this study provided the researcher with the opportunity to reassess the issue of systems adaptation, adoption, and usability by adult first-time users. This research is particularly driven by sound interaction design principles, user adaptation, and usability and user experiencePh. D. (Information Systems)School of Computin