RESUMO
Background: Lupus, known as a chronic multisystem autoimmune disease, has become more common in China currently. Above all, most Chinese Lupus patients haven't ample knowledge and adequate understanding of this complicated chronic disease. In recent years, social networking sites have created an interactive environment in which patients can obtain health information and also can exchange personal experiences with others having similar health concerns. Objective: The overall aim of this study is to develop a better understanding of the social support requested and received during the routine social media use of lupus activists and their referents. In other words. This paper seeks to explore whether the lupus-related posts disseminated on the Sina microblog platform can serve and satisfy the needs of this group. Methods: Content analysis and descriptive analysis were conducted to ascertain the core topics of lupus-related posts on the Sina microblog. Chi-square tests were performed to determine the differences in types of social support between provision and request groups, as well as engaged and non-engaged groups. Finally, negative binomial regression was undertaken to investigate which types of social support generated more audience engagement. Results: By analyzing 9822 lupus-related posts derived from the Sina microblog, disease description was the most prominent theme. Evidence is presented which shows that information support was requested and supplied more frequently than emotional and instrumental support. Specifically, information support was provided more than requested, while the instrumental and emotional support provisions were less numerous than the requests. Analysis revealed that posts containing information support provisions attracted more engagement than those with the other five types of social support. Conclusions: Social networking sites play a critical role on disseminating lupus-related information and provide an interactive space in which users can freely communicate their health conditions and seek peer support. However, health practitioners not only have to present more communication strategies to provide emotional and instrumental support through social media, but also have to boost audience engagement.
RESUMO
The use of Information and Communications Technology (ICT) in health systems is increasing worldwide. While it is assumed that ICT holds great potential to make health services more efficient and grant patients more empowerment, research on these trends is at an early stage. Building on a study of the impact of ICT on physicians and patients in Israel, a Short Term Scientific Mission (STSM) sponsored by COST Net in conjunction with CIES/ISCTE IUL (Portugal) facilitated a comparison of ICT in health in Israel and Portugal. The comparison focused on patient empowerment, physician behavior and the role of government in implementing ICT. The research in both countries was qualitative in nature. In-depth interviews with the Ministry of Health (MOH), the private sector, patients associations, health plans and researchers were used to collect data. Purposeful sampling was used to select respondents, and secondary sources were used for triangulation. The findings indicate that respondents in both countries feel that patient empowerment has indeed been furthered by introduction of ICT. Regarding physicians, in both countries ICT is seen as providing more information that can be used in medical decision making. Increased access of patients to web-based medical information can strengthen the role of patients in decision making and improve the physician-patient relationship, but also shift the latter in ways that may require adjustments in physician orientation. Physician uptake of ICT in both countries involves overcoming certain barriers, such as resistance to change. At the national level, important differences were found between the two countries. While in Israel, ICT was promoted and adopted by the meso level of the health system, in particular the health plans and government intervention can be found in a later stage, in Portugal the government was the main developer and national strategies were built from the beginning. These two approaches present different advantages and disadvantages. Government involvement in earlier stages could provide benefit in terms of interoperability of systems between different healthcare organizations. However, innovation could be slowed down due to government bureaucracy or lack of leadership. The work provides information in order to understand and improve ICT services. Additionally, it provides input regarding impact of ICT on the physician/patient relationship and national policies in the area.
RESUMO
Based on the experience of a Short Term Scientific Mission (STSM) promoted by COST Net and developed in CIES/ISCTE-IUL (Portugal), this paper presents a reflection about the implementation of Information & Communication Technologies (ICT) in the healthcare sector in Israel and Portugal. Specifically, we focus on the impacts of ICT or eHealth on patient empowerment, as perceived by doctors and managers in order to better comprehend the role of national policy and explore the options for building a national strategy regarding ICT in healthcare. The experience of the Portuguese healthcare system was selected and compared to the results found in a similar research in Israel. Methodologically, in-depth interviews with the Ministry of Health, the private sector, patients associations and researches were used to collect data. Purposeful sampling was used to select respondents, and secondary sources were used for triangulation. The findings of the research work show that the increased deployment of ICT has furthered patient empowerment (1). From the doctors' perspective, while ICT has provided more information in the long-run, changes of these magnitudes were not easy in the beginning. These findings were similar in both countries. The work concludes that ICT tools were successfully implemented and the general perception is that they have been beneficial. The work provides information in order to understand and improve ICT services. Additionally, the results suggest alternatives for future investments in these technologies.
