Community-Based Social Media for Low-Income Pediatric Asthma Patients Jongmyung Choi1 and Rosa I. Arriaga2 1
Computer Engineering, Mokpo National University Jeonnam, South Korea
[email protected] 2 School of Interactive Computing, Georgia Institute of Technology Atlanta, GA, USA
[email protected]
Abstract. The social support has shown positive influence on self-management of chronic illness. With the advance of technology, there have been researches on the role of Social Media in healthcare. In this paper, we propose a community-based Social Media system, called Asthma411 for low-income children with asthma. Asthma411 is based on Short Message System (SMS) of cell phone because it is relatively inexpensive and it is ubiquitous. Because it is a community-based social media, it is tightly coupled with the real world. Though the traditional social media can share only general information for healthcare, Asthma411 allows people to watch the children with asthma and report their symptoms in real time, and makes it possible for people around the children to manage or help the children in asthma exacerbation. Due to the features of being ubiquitous, real time monitoring and caring of the children with asthma, Asthma411 is an advanced and proactive social media for chronic healthcare. Keywords: Chronic Illness, Asthma, Social Media, Community-based, Asthma411.
1
Introduction
Asthma is one of serious illness because of its high morbidity and mortality. The worse thing is that it is a prevalent chronic illness among children in the United States. In the United State, pediatric asthma rates have increased from 8% in 2009 to about 10% in 2011 [1]. According to another survey [2], asthma caused 10.6 million physician office visits and 1.7 million emergency room visits in the United States, in 2006. Asthma has been known that it is not curable, but according to Akinbami et al. [3] “its symptoms and adverse effects on children can be controlled.” Chronic illness such as asthma requires long-term treatment and self-management. Self-management includes “understanding of one’s disease, effective management of symptoms using a plan of action, medication, and appropriate psychological coping skills” [4]. However, children with asthma have difficulties in managing all the tasks G. Lee et al. (Eds.): ICHIT 2012, CCIS 310, pp. 203–210, 2012. © Springer-Verlag Berlin Heidelberg 2012
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of self-management by themselves, so that they need the support from their parents, schoolteachers, and other community members. The support includes “helping the children to avoid asthma trigger”, “medication regularly”, and “handling emergent situation”. There have been tries of social media (also called social network services or social network sites) for healthcare [5,6]. Most of them adopt social media for sharing information about experts and medical information, and sometimes for sharing experiences of being patients or being care givers. However, these social media cannot give them the features of real time monitoring or caring for patients, which are required when caring pediatric asthma patients. In this paper, we propose a community-based social media for pediatric asthma patients. The social media follows our Ubiquitous Community Care Model [7] for helping the children with asthma. In specific, it is a localized social media, which means that its members are limited to the people in the same town with the children. It is localized because only people who live together can monitor their symptoms and give them physical helps in emergency. It is designed to work on Short Message System (SMS) of cell phone because of practical reasons; it should be ubiquitous, and it should be not expensive. We contribute three folds to the pediatric asthma management. First, compared to the traditional social media for healthcare, it allows people to watch the children, and report their asthma symptoms in real time. Furthermore, in emergency such as asthma exacerbation, they can help the children with the proper knowledge of asthma management. Second, our system is based on SMS, so that it can be accessed almost anytime and anywhere by anyone who has a cellphone. Third, our system can be applied to other chronic conditions with little modification. This paper consists of five sections. In section 2, we summarize the related works and compare our work with them. In section 3, we describe the requirements of social media. In section 4, we discuss our community-based social media in detail. After that, we reveal our conclusions in section 5.
2
Related Work
There have been various research topics on pediatric asthma patients and social media for healthcare. We surveyed related research to our work and categorized them into two groups: social media for general healthcare and web-based systems for asthma management. There have been web-based systems [6,8,9] for patients and doctors to share health related information and QnA patients’ symptoms. According to Melanie Swan [10], these systems provide emotional support, information sharing, physician Q&A, qualified self-tracking, and even clinical trials access. Furthermore, physician-onlysites provide opportunities for physicians to discuss specific illness and its therapy, and share healthcare related information [10]. Gunther Eysenbach [11] suggests Personal Health Record (PHR) model that adopts Web 2.0 features: Social Networking, Collaboration, Participation, Apomediation, and Openness. Some researches [12,13] suggest the usage of social media for education of healthcare. Tara Lagu and his colleagues [14] analyzed the web sites that provide the evaluation of
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physicians, and the evaluation information was accepted as helpful for patients to determine physicians when they were sick. The other group of research is related to web-based self-management programs for asthma management. Victor van der Meer and his colleagues [15] argue that internetbased asthma self-management can utilize electronic monitoring, accessibility to information, e-mail, and an electronic action plan. Victor van der Meer's another work [16] shows that Internet based asthma self-management improves asthma control and lung function, but not exacerbations. Compared to the existing researches, our work has uniqueness. First, the existing social media for healthcare basically aim at sharing general health related information, but our system is for community members to care the children with asthma in the real world. Second, the existing systems are web-based, so that they have to use computers or smartphones. However, our system is based on SMS of cellphones, so almost everybody can use our system at any time and everywhere.
3
Requirements of Social Media for Pediatric Asthma Care
In our previous study [17], we found out that there were various caregivers including parents, family members, schoolteachers, school nurses, and community health workers (CHWs), and that they needed more efficient communication for caring the child with asthma. Based on the study, we also proposed the Ubiquitous Community Care Model [7] for monitoring the child, reporting his/her asthma symptoms, and caring for him/her in emergency situations. In current practice, the caregivers are grouped into five categories (e.g. home, school, hospital, neighbors, and community health workers), and there is communication within a group and between groups: home-school, home-hospital, home-CHWs, parents-neighbors, and school-hospital. For media, they use various communication media including face-to-face talks, sticky notes, phone calls, emails, SMS, and even fax. However sometimes they cannot reach the others in time. For example, parents cannot contact the schoolteacher via phone calls while she is in class. Fig. 1 shows the communication path within a group and among four groups – home, school, CHWs, and neighbors (including other parents of asthmatic children). We omit hospital in the communication path because we want to focus on the community supports in asthma management.
Fig. 1. Communication for Caring a Child with Asthma
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In the figure, the dashed lines indicate monitoring and caring the child with asthma. People in the community can monitor the child and help him/her when she/he needs helps from them. The solid arrows represent communication among groups and within a group. The communications are about the asthma symptoms of the child, general information about asthma management, and the child specific information of asthma. They also need the information from public media including weather and pollen count. Asthma management has unique features that are supposed to be reflected to any asthma management systems. 1) Asthma exacerbations have symptoms, but we cannot predict it. On the exacerbation, it should be managed in time, or the child with asthma may be in danger even to death. 2) Environmental conditions such as weather and smoking are critical to asthma patients, and 3) they have to avoid their asthma triggers. 4) Children with asthma have their own routine tasks to manage asthma such as taking medicine and checking lung capacity. The social media systems may helpful for asthma management because they share healthcare information with patients and caregivers. Therefore, we classify functional requirements which are elicited in our previous study [18] into two groups: location sensitive and location independent. We have five location sensitive requirements, nine location independent requirements, and three non-functional requirements. Location sensitive requirements are related to the system’s features for caring the child with asthma: (R1) being ubiquitous, (R2) accessibility to the child’s health information, (R3) knowledge for the treatment, (R4) constant monitoring the child, and (R11) sensing asthma triggers around the child. These location sensitive requirements allow people to watch the child, report his/her asthma symptoms, and help the child to manage asthma exacerbation in time. (R2) and (R3) are classified into location sensitive requirements because people around the child can perform the tasks. Location independent requirements are about functions for processing information for asthma management: (R5) keeping updated asthma status information, (R6) recording asthma symptoms, (R7) summarizing the symptoms information for doctors, (R8) unified communication media, (R9) a mechanism to cooperate each other to keep daily routines, (R10) reminder mechanism not to miss the daily routines, (R12) providing weather information, (R13) medical information sharing.
4 4.1
Design Issues for Ubiquitous Community Care System Community-Based Social Media Model
The traditional social media including PatientsLikeMe [8], CureTogether [9], and Facebook can share healthcare information, but the friends of a user are not related to the location or the physical distance between them. Fig. 2 shows the traditional social media connection. In the figure, circles are persons, and filled circles are friends of big circles. The lines are the friendship relation between persons. In the traditional social media, the friends are connected through the web, and they may locate in remote distance or even in other country. Furthermore, the number of friends is large. For example, according to Lars Backstrom [19], 50% of Facebook users have over 100 friends.
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Fig. 2. Traditional Social Media
Compared to the traditional social media, our proposal, community-based social media, is a localized social media. In this social media, all friends are people who live in the same town with the child with asthma. Therefore the number of friends is much smaller than the traditional social media. This social media allows users to share information about events which happen in the local area with community members including family and neighbors. Therefore this social media are more tightly coupled with the real life than the traditional social media are.
Fig. 3. Community-based Social Media
4.2
Social Media User Profile
In social media, user profile is an important feature, and users use their profiles to represent themselves to others [20]. In the social media for pediatric asthma patients, there are two types of profiles: patients and caregivers. The patient’s profile may include his/her basic information, parents’ contact information, his/her asthma triggers, emergency plans, medication information, and his/her caregivers list. The caregiver’s profile may include his/her basic information, the patients who she/he cares for, and his/her role (e.g. parent and schoolteacher) in care. According to the profile, the social network is built, and the proper information is transferred to the right persons. 4.3
Mobile Social Media on SMS Platform
The traditional social media are based on the web, and mobile apps are developed for smart phone users. However, our proposal system starts from mobile social media, and the web-based system is proposed for additional usages such as re-reading
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messages and providing analyzed view. The basic structure of our proposal system is based on Short Message System (SMS, also known as text). This architecture is caused by the most important requirement, ‘cost’, because the system is for lowincome families. SMS has limitations in functions and usability, but it has one big advantage: being ubiquitous. Almost every cell phones support SMS, so that lowincome families can use the system without much extra costs. Furthermore, it can be used in developing countries. Fig. 4 shows the mapping social media and the real world. In the real world, there are communities for helping children with asthma. Each community is constructed according to its geographical region. The community includes parents, schoolteachers, school nurses, coaches, and neighbors within the geographical region.
Fig. 4. SMS Plarform Bridge
As a social media, the SMS platform has basic two operations (read and write), which cover most of social media services: to access the child’s asthma triggers and emergency plans, and to report his/her symptoms. In fact, there have been successful efforts using SMS in healthcare, and we extend SMS to a social media platform for chronic illness management. When a user wants to share information, he/she can use the system following a simple text message format: . For example, following two messages are for reading John’s information and reporting John’s symptom at school: “R John’s action plan” and “W John had a bad cough at school”. 4.4
Extending SMS Platform to Multi-platform
We can extend the SMS-based social media to multi-platform system in order to adopt other communication media such as smartphone app and the web. In order to support the diverse media, we use “Front End” module, which can handle multiple message types including SMS, the web requests, and the app requests. Every message is transferred to “Social Media Manager”, and it processes the message. It also determines the message receivers when some events such as asthma exacerbation or mild symptoms according to the relationship in the social media. Basically, Astham411 follows the centralized client server architecture as shown in Fig. 5.
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Fig. 5. Asthma411 System Architecture
In Ashtma411, there are three types of clients: SMS client, smartphone app client, and web client accessed from desktops. All clients are connected to the “Front End”. For the web and app client, the requests to “Front End” are fixed, so that it is easy to process. However, SMS client’s messages require a command interpreter because the text messages from people are not well formed. TaskManager executes time-specific tasks such as reminder jobs. Routine tasks are very important to chronic patients. “Abstractor” allows for doctors to see the abstracted information about the pediatric asthma patients.
5
Conclusions
Pediatric asthma is a widely prevalent chronic illness, and it requires management strategies that mediate communication between numbers of caregivers. In this paper we propose a community-based social media for pediatric asthma patients, Asthma411. It has three features. First, it is based on SMS platform, so that it costs little and it is ubiquitous. Furthermore, this feature makes it possible for people to watch the children and report their asthma symptoms. Second, it is community-based, and all members of the social media are our neighbors or friends in the same town or city. Third, Asthma411 is easy to be extended from SMS platform to multi-platform which supports SMS, smartphone app, and the web. Our work in this study is very meaningful because of three reasons. First, we extend the social media in healthcare from information providing to real time monitoring, real time reporting, and real time caring of patients. Second, we propose the cell phone based social media rather than the web based social media. Third, our work can be easily extended to other chronic illness such as diabetes and smoking. In the future, we will implement the system and conduct user test with the system.
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