Using a Facebook Forum to Cope With Narcolepsy After Pandemrix Vaccination: Infodemiology Study.

BACKGROUND: In 2010, newly diagnosed narcolepsy cases among children and adolescents were seen in several European countries as a consequence of comprehensive national vaccination campaigns with Pandemrix against H1N1 influenza. Since then, a large number of people have had to live with narcolepsy and its consequences in daily life, such as effects on school life, social relationships, and activities. Initially, the adverse effects were not well understood and there was uncertainty about whether there would be any financial compensation. The situation remained unresolved until 2016, and during these years affected people sought various ways to join forces to handle the many issues involved, including setting up a social media forum. OBJECTIVE: Our aim was to examine how information was shared, and how opinions and beliefs about narcolepsy as a consequence of Pandemrix vaccination were formed through discussions on social media. METHODS: We used quantitative and qualitative methods to investigate a series of messages posted in a social media forum for people affected by narcolepsy after vaccination. RESULTS: Group activity was high throughout the years 2010 to 2016, with peaks corresponding to major narcolepsy-related events, such as the appearance of the first cases in 2010, the first payment of compensation in 2011, and passage of a law on compensation in July 2016. Unusually, most (462/774, 59.7%) of the group took part in discussions and only 312 of 774 (40.3%) were lurkers (compared with the usual 90% rule of thumb for participation in an online community). The conversation in the group was largely factual and had a civil tone, even though there was a long struggle for the link between the vaccine and narcolepsy to be acknowledged and regarding the compensation issue. Radical, nonscientific views, such as those expounded by the antivaccination movement, did not shape the discussions in the group but were being actively expressed elsewhere on the internet. At the outset of the pandemic, there were 18 active Swedish discussion groups on the topic, but most dissolved quickly and only one Facebook group remained active throughout the period. CONCLUSIONS: The group studied is a good example of social media use for self-help through a difficult situation among people affected by illness and disease. This shows that social media do not by themselves induce trench warfare but, given a good group composition, can provide a necessary forum for managing an emergency situation where health care and government have failed or are mistrusted, and patients have to organize themselves so as to cope.

Mobile health treatment support intervention for HIV and tuberculosis in Mozambique: Perspectives of patients and healthcare workers.

BACKGROUND: Studies have been conducted in developing countries using SMS to communicate with patients to reduce the number of missed appointments and improve retention in treatment, however; very few have been scaled up. One possible reason for this could be that patients or staff are dissatisfied with the method in some way. This paper reports a study of patients' and healthcare workers' (HCW) views on an mHealth intervention aiming to support retention in antiretroviral therapy (ART) and tuberculosis (TB) treatment in Mozambique. METHODS: The study was conducted at five healthcare centres in Mozambique. Automated SMS health promotions and reminders were sent to patients in a RCT. A total of 141 patients and 40 HCWs were interviewed. Respondents rated usefulness, perceived benefits, ease of use, satisfaction, and risks of the SMS system using a Likert scale questionnaire. A semi-structured interview guide was followed. Interviews were transcribed and thematic analysis was conducted. RESULTS: Both patients and HCW found the SMS system useful and reliable. Most highly rated positive effects were reducing the number of failures to collect medication and avoiding missing appointments. Patients' confidence in the system was high. Most perceived the system to improve communication between health-care provider and patient and assist in education and motivation. The automatic recognition of questions from patients and the provision of appropriate answers (a unique feature of this system) was especially appreciated. A majority would recommend the system to other patients or healthcare centres. Risks also were mentioned, mostly by HCW, of unintentional disclosure of health status in cases where patients use shared phones. CONCLUSIONS: The results suggest that SMS technology for HIV and TB should be used to transmit reminders for appointments, medications, motivational texts, and health education to increase retention in care. Measures must be taken to reduce risks of privacy intrusion, but these are not a main obstacle for scaling up systems of this kind.

Mobile health treatment support intervention for HIV and tuberculosis in Mozambique: perspectives of patients and healthcare workers

Background Studies have been conducted in developing countries using SMS to communicate with patients to reduce the number of missed appointments and improve retention in treatment, however; very few have been scaled up. One possible reason for this could be that patients or staff are dissatisfied with the method in some way. This paper reports a study of patients' and healthcare workers' (HCW) views on an mHealth intervention aiming to support retention in antiretroviral therapy (ART) and tuberculosis (TB) treatment in Mozambique. Methods The study was conducted at five healthcare centres in Mozambique. Automated SMS health promotions and reminders were sent to patients in a RCT. A total of 141 patients and 40 HCWs were interviewed. Respondents rated usefulness, perceived benefits, ease of use, satisfaction, and risks of the SMS system using a Likert scale questionnaire. A semi-structured interview guide was followed. Interviews were transcribed and thematic analysis was conducted. Results Both patients and HCW found the SMS system useful and reliable. Most highly rated positive effects were reducing the number of failures to collect medication and avoiding missing appointments. Patients' confidence in the system was high. Most perceived the system to improve communication between health-care provider and patient and assist in education and motivation. The automatic recognition of questions from patients and the provision of appropriate answers (a unique feature of this system) was especially appreciated. A majority would recommend the system to other patients or healthcare centres. Risks also were mentioned, mostly by HCW, of unintentional disclosure of health status in cases where patients use shared phones. Conclusions The results suggest that SMS technology for HIV and TB should be used to transmit reminders for appointments, medications, motivational texts, and health education to increase retention in care. Measures must be taken to reduce risks of privacy intrusion, but these are not a main obstacle for scaling up systems of this kind.

Mobile health treatment support intervention for HIV andtuberculosis in Mozambique: Perspectives of patients and healthcare workers

Studies have been conducted in developing countries using SMS to communicate with patients to reduce the number of missed appointments and improve retention in treatment, however; very few have been scaled up. One possible reason for this could be that patients or staff are dissatisfied with the method in some way. This paper reports a study of patients' andhealthcare workers' (HCW) views on an mHealth intervention aiming to support retention in antiretroviral therapy (ART) and tuberculosis (TB) treatment in Mozambique. Methods Thestudy wasconducted atfive healthcare centres in Mozambique. Automated SMS health promotions and reminders were sent to patients in a RCT. A total of 141 patients and 40 HCWswereinterviewed. Respondents rated usefulness, perceived benefits, ease of use, satisfaction, and risks of the SMS system using a Likert scale questionnaire. A semi-structured interview guide was followed. Interviews were transcribed and thematic analysis was conducted. Results Both patients and HCWfoundtheSMSsystemusefulandreliable. Most highly rated positive effects were reducing the number of failures to collect medication and avoiding missing appointments. Patients' confidence in the system was high. Most perceived the system to improve communication between health-care provider and patient and assist in education andmotivation. The automatic recognition of questions from patients and the provision of appropriate answers (a unique feature of this system) was especially appreciated. A majority would recommend the system to other patients or healthcare centres. Risks also were mentioned, mostly by HCW, of unintentional disclosure of health status in cases where patients use shared phones. Conclusions Theresults suggest that SMS technology for HIV and TB should be used to transmit reminders for appointments, medications, motivational texts, and health education to increase retention in care. Measures must be taken to reduce risks of privacy intrusion, but these are not a mainobstacle for scaling up systems of this kind.

The Development of the Recovery Assessments by Phone Points (RAPP): A Mobile Phone App for Postoperative Recovery Monitoring and Assessment.

BACKGROUND: In Sweden, day surgery is performed in almost 2 million patients per year. Patient satisfaction is closely related to potential adverse events during the recovery process. A way to empower patients and give them the opportunity to affect care delivery is to let them evaluate their recovery process. The most common evaluation method is a follow-up telephone call by a nurse one or two days after surgery. In recent years, mHealth apps have been used to evaluate the nurse-patient relationship for self-management in chronic diseases or to evaluate pain after surgery. To the best of our knowledge, no previous research has explored the recovery process after day surgery via mobile phone in a Swedish cohort. OBJECTIVE: The objective of the study is to describe the process of developing a mobile phone app using a Swedish Web-based Quality of Recovery (SwQoR) questionnaire to evaluate postoperative recovery after day surgery. METHODS: The development process included five steps: (1) setting up an interdisciplinary task force, (2) evaluating the potential needs of app users, (3) developing the Swedish Web version of a QoR questionnaire, (4) constructing a mobile phone app, and (5) evaluating the interface and design by staff working in a day-surgery department and patients undergoing day surgery. A task force including specialists in information and communication technology, eHealth, and nursing care worked closely together to develop a Web-based app. Modifications to the QoR questionnaire were inspired by instruments used in the field of recovery for both children and adults. The Web-based app, Recovery Assessment by Phone Points (RAPP) consists of two parts: (1) a mobile app installed on the patient's private mobile phone, and (2) an administrator interface for the researchers. RESULTS: The final version of the SwQoR questionnaire, which includes 31 items, was successfully installed in RAPP. The interface and the design were evaluated by asking for user opinions about the design and usefulness of the app with 10 day surgery patients. Some minor adjustments were made concerning text size and screen color. CONCLUSIONS: Taking advantage of joint expertise, a useable Web-based app adaptable to different technical platforms was constructed. In addition, the SwQoR was successfully transferred into digital format for use on mobile phones.

SMSaúde: Design, Development, and Implementation of a Remote/Mobile Patient Management System to Improve Retention in Care for HIV/AIDS and Tuberculosis Patients.

BACKGROUND: The widespread and low cost of mobile phones and the convenience of short message service (SMS) text messaging suggest potential suitability for use with alternative strategies for supporting retention in care and adherence to the treatment of various chronic diseases, such as HIV and tuberculosis (TB). Despite the growing body of literature reporting positive outcomes of SMS text message-based communication with patients, there is yet very little research about the integration of communication technologies and electronic medical records or electronic patient tracking systems. OBJECTIVE: To design, develop, and implement an integrated mobile phone text messaging system used to follow up with patients with HIV and TB in treatment in Mozambique. METHODS: Following the design science research methodology, we developed a Web-based system that provides support to patients. A case study involving three health care sites in Mozambique was a basis for discussing design issues for this kind of system. We used brainstorming techniques to solicit usability requirements, focus group meetings to discuss and define system architecture, and prototyping to test in real environments and to improve the system. RESULTS: We found six sets of system requirements that need to be addressed for success: data collection, telecommunication costs, privacy and data security, text message content, connectivity, and system scalability. A text messaging system was designed and implemented in three health facilities. These sites feed data into a central data repository, which can be used for analysis of operations and decision support. Based on the treatment schedule, the system automatically sent SMS text message appointment reminders, medication reminders, as well as motivational and educational messages to patients enrolled in antiretroviral therapy and TB treatment programs. CONCLUSIONS: We successfully defined the requirements for, designed, and implemented a mobile phone text messaging system to support HIV and TB treatments. Implementation of this system could improve patients' self-management skills and strengthen communication between patients and health care providers.

Mobile technologies and geographic information systems to improve health care systems: a literature review.

BACKGROUND: A growing body of research has employed mobile technologies and geographic information systems (GIS) for enhancing health care and health information systems, but there is yet a lack of studies of how these two types of systems are integrated together into the information infrastructure of an organization so as to provide a basis for data analysis and decision support. Integration of data and technical systems across the organization is necessary for efficient large-scale implementation. OBJECTIVE: The aim of this paper is to identify how mobile technologies and GIS applications have been used, independently as well as in combination, for improving health care. METHODS: The electronic databases PubMed, BioMed Central, Wiley Online Library, Scopus, Science Direct, and Web of Science were searched to retrieve English language articles published in international academic journals after 2005. Only articles addressing the use of mobile or GIS technologies and that met a prespecified keyword strategy were selected for review. RESULTS: A total of 271 articles were selected, among which 220 concerned mobile technologies and 51 GIS. Most articles concern developed countries (198/271, 73.1%), and in particular the United States (81/271, 29.9%), United Kingdom (31/271, 11.4%), and Canada (14/271, 5.2%). Applications of mobile technologies can be categorized by six themes: treatment and disease management, data collection and disease surveillance, health support systems, health promotion and disease prevention, communication between patients and health care providers or among providers, and medical education. GIS applications can be categorized by four themes: disease surveillance, health support systems, health promotion and disease prevention, and communication to or between health care providers. Mobile applications typically focus on using text messaging (short message service, SMS) for communication between patients and health care providers, most prominently reminders and advice to patients. These applications generally have modest benefits and may be appropriate for implementation. Integration of health data using GIS technology also exhibit modest benefits such as improved understanding of the interplay of psychological, social, environmental, area-level, and sociodemographic influences on physical activity. The studies evaluated showed promising results in helping patients treating different illnesses and managing their condition effectively. However, most studies use small sample sizes and short intervention periods, which means limited clinical or statistical significance. CONCLUSIONS: A vast majority of the papers report positive results, including retention rate, benefits for patients, and economic gains for the health care provider. However, implementation issues are little discussed, which means the reasons for the scarcity of large-scale implementations, which might be expected given the overwhelmingly positive results, are yet unclear. There is also little combination between GIS and mobile technologies. In order for health care processes to be effective they must integrate different kinds of existing technologies and data. Further research and development is necessary to provide integration and better understand implementation issues.