Pre-print copy accepted at the IEEE 38th Annual International Conference of the Engineering in Medicine and Biology Society (EMBC), 2016 - IEEE Copyright (Please cite: http://ieeexplore.ieee.org/document/7592005/)
Lessons Learnt from a MOOC about Social Media for Digital Health Literacy Suleman Atique1,8, Mowafa Hosueh2, Luis Fernandez-Luque3, Elia Gabarron4, Marian Wan5, Onkar Singh1, Vicente Traver Salcedo6, Yu-Chuan (Jack) Li1,7, Syed-Abdul Shabbir*1,7
Abstract— Nowadays, the Internet and social media represent prime channels for health information seeking and peer support. However, benefits of health social media can be reduced by low digital health literacy. We designed a massive open online course (MOOC) course about health social media to increase the students’ digital health literacy. In this course, we wanted to explore the difficulties confronted by the MOOC users in relation to accessing quality online health information and to propose methods to overcome the issues. An online survey was carried out to assess the students’ digital health literacy. This survey was one of the activities for the enrolled learners in an online course entitled “Social Media in Health Care” on “FutureLearn”, one of the popular MOOC platforms. The course was hosted by Taipei Medical University, Taiwan. Data from a total of 300 respondents were collected through the online survey from 14 December 2015 to 10 January 2016. Most participants (61%) considered finding online health information is easy or very easy, while 39% were unsure or found it difficult to retrieve online health information. Most (63%) were not sure about judging whether available information can be used for making health decisions. This study indicates a demand for more training to increase skills to improve the capability of health consumers to identify trustworthy, useful health information. More research to understand the health information seeking process will be crucial in identifying the skillsets that need to be further developed. MOOCs about digital health can be a great source of knowledge when it comes to studying patients’ needs.
I. INTRODUCTION The Internet has been used for early health information seeking for the past two decades [1]. Nowadays, the Internet and healthcare professionals are two major sources of health *Corresponding author. Dr. Shabbir Syed-Abdul (
[email protected]) 1 Graduate Institute of Biomedical Informatics, College of Medical Science and Technology, Taipei Medical University, Taiwan, Wuxing Street 250, Taipei 11031, Taiwan (Suleman Atique:
[email protected]) 2 Department of Health Informatics, College of Public Health and Health Informatics, King Saud Bin Abdulaziz University for Health Sciences, National Guard Health Affairs, Riyadh, Saudi Arabia
[email protected] 3 Qatar Computing Research Institute, Hamad bin Khalifa University (HBKU), Qatar Foundation, Doha, Qatar
[email protected] 4 a-Norwegian Center for eHealth Research, University Hospital of North Norway, Tromsø, b-Department of Clinical Medicine, The Arctic University of Norway, Tromsø
[email protected] 5 Office of Information Technology, Taipei Medical University, Taiwan
[email protected] 6 Universitat Politècnica de València, Spain,
[email protected] 7 International Center for Health Information Technology, Taipei, Taiwan
[email protected] 8 Institute of Public Health, Heidelberg University, Germany
978-1-4577-0220-4/16/$31.00 ©2016 IEEE
information [2], where the Internet is often the first source chosen. Health consumers not only search for online health information but also seek and offer peer support, since the Internet is a major channel for socialization. However, it is not always easy to find high-quality health information, since relevant, trustworthy information coexists with misinformation, such as anti-vaccination propaganda or people promoting anorexia as a lifestyle [3]. Research spanning many years has shown that patients can turn the use of Internet into an experience to catalyze patient empowerment, allowing them to take on a more proactive, positive role in their health [4]. Therefore, the use of Internet is already part of the health decision making of many patients [5, 6]. The proportion of adult health information seekers in the United States who used the Internet as a source for health information increased from 25% in 2000 to 61% in 2008. Indeed, the Internet has emerged as the primary source used to gain health information regarding drugs, diseases, and health conditions [7]. There is an increasing trend and trust among the general population when it comes to using Internet as information source on cancer in England, although it has been reported that the primary preferred source continues to be physicians. Still, the Internet has emerged as popular tool in public’s eyes [8]. According to a Statistics Canada report from 2009, around 80% of Canadians over the age of 16 use the Internet for personal reasons, as well as to search for health information; for the latter purpose, the Internet was used 11% more frequently in 2009 compared to 2007 [9]. As the Internet is being used increasingly as a source of health information, there is a need to educate and empower individuals to determine the credibility and authenticity of online health information so that the patient empowerment experience can be maximized and potential harm from misleading information can be recognized and avoided [10]. As the Internet has emerged as an information retrieval tool for a variety of purposes, including medical reasons, questions about the authenticity and credibility of such information has been raised. Currently, there are no standards to validate information obtained through the Internet [11]. It is known that increasing digital health literacy can help patients seeking online health information [12, 13]. The quality of health information on the Internet is a public health issue and is related to other factors, such as accuracy and readability [9, 14]. There are two variables that account for confronting online health information that is not on par with quality, accuracy, and readability, including the amount of inappropriate information on the Web and the capacity of the general public to determine which sites lack
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the required reliability and validity of information. There is an established relationship between number of Web resources presenting health information with low quality and adverse health outcomes in the population of interest [15]. Danger to the population can be decreased to a considerable extent via enhancing the capacity of users to differentiate between information of interest that is reliable and unwanted and misleading health information, which can potentially cause harm. The objective of this paper is to explore people’s ability to find useful health information and their capacity to judge the credibility and usability of online information. It aims to explore the difficulties confronted by Web users in attempting to access quality Web-based health information and to propose methods to bridge the gap. Moreover, the study aims to improve e-health literacy among citizens, helping them to, evaluate and analyze information and distinguish whether it is right and wrong one, promote a healthy lifestyle, prevent the impact of misleading information, strengthen patient empowerment, and encourage participation, thereby improving health outcomes. II. METHODS Educators from Taipei Medical University conducted an online course entitled Social Media in Health Care: Benefits and Challenges, which was offered from 30 November 2015 to 8 January 2016. As a part of the course, we administered a questionnaire to the learners who enrolled and actively participated in this course. Although about 1,500 students were active learners among 4,114 students that enrolled in the course, only about 20% of the active learners responded to the survey. The purpose of the survey was to explore how easy or difficult it is to find and judge online health-related information. Ten questions were included in the survey; five related to finding online information, and five focused on judging information that has been online. Along with these questions demographic information like sex, profession, work experience, and location was collected. The 10 questions for this survey were taken and modified from the HLS-EU-Q47 questionnaire of the consortium for the European Health Literacy Survey (HLS-EU), which was designed for the assessment of health literacy in general [20]. III. RESULTS The survey population comprised students, medical professionals, and business-related people. Among the survey participants, 65% were females and 35% were males. Figure 1 shows the basic characteristics and geographical distribution of the participants. Most (66%) were frequent users of the Internet.
Figure 1: Basic description and demographic information of the participants
The survey results unveiled that most of the participants (61%) found it easy or very easy to find online health information that concerns them, while 39% were not sure or found it difficult. Moreover, while only 37% found it easy or very easy to judge whether available information can be used to make decisions about medical care plans for improving their health, 63% were not sure about this.
Figure 2: Responses regarding finding online health information
When searching for epidemic-related information within their region, approximately 40% (n=114) of the respondents reported that it was easy or very easy to perform the task. However, approximately 35% (n=100) of the respondents gave a neutral response, while 25% (n=72) reported that it was difficult or very difficult to search for online information about epidemics within their region. Approximately, 48% (n=107) of the respondents reported that was easy or very easy to determine the dosage, interactions, and contra-indications of the medications they were searching for. Meanwhile, 28% (n=63) of the patients had a neutral response, and 24% (n=52) of the respondents reported that it was difficult or very difficult to search for medication-related information.
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In terms of finding information on what to do in a medical emergency, approximately 62% (n=138) of the respondents reported that it was easy or very easy to access emergency-related information. Approximately 25% (n=55) of the respondents gave a neutral response on this topic. Finally, less than 15% (n=29) of the respondents reported that it was very difficult to find information relating to a medical emergency.
Figure 5: Detailed responses to 'To Judge'
In terms of judging the reliability of social media data in relation to illness, approximately 29% (n=64) of the respondents reported that it was easy or very easy to judge the reliability of social media data relating to illness. Approximately 30% (n=67) gave a neutral response, while 41% (n=93) reported that it was difficult or very difficult to rate the reliability of social media data. Almost 51% (n=113) of the respondents reported that it was easy or very easy for them to judge when they needed to go for a checkup after searching online health information. Almost 29% (n=65) reported a neutral response, while 20% (n=44) of the respondents noted that it was very difficult or difficult to judge when they needed to visit a physician after searching online for health information. Figure 3: Responses regarding judging online health information
In terms of diet-related information in helping with illness, 32% (n=71) reported that it was easy or very easy to judge the information. Meanwhile, 33% (n=74) gave a neutral response, and 35% (n=77) reported that it was difficult or very difficult to find diet-related information online. In relation to judging the reliability of vaccination-related online information, 37% (n=82) of the respondents reported that it was easy or very easy to retrieve such information. About 33% (n=74) of the respondents gave a neutral response, and 30% reported that it was difficult or very difficult to judge the reliability of vaccination information online.
Figure 4: Detailed responses to 'To Find' information
Our survey results showed that most of the respondents— over 80% and 72%—reported that it was easy or very easy to find information relating to symptoms and treatments online, respectively. Only a minority of the respondents, at less than 5.25% and 7.35%, found it difficult or very difficult to find online information about symptoms and treatment of illnesses. Close to 33% (n=73) of the respondents reported that it was easy or very easy to judge the advantages and disadvantages of different treatment options when using the Internet. Approximately 35% (n=78) of the respondents reported a neutral response, while 32% reported that it was difficult or very difficult to determine the advantages and disadvantages of different treatment options.
IV. DISCUSSION We conducted a survey to explore health consumers’ perception and knowledge regarding digital health literacy and the difficulties health consumers face in accessing quality health information. We investigated 10 dimensions relating to usability and evaluation that we identified through the literature and domain experts in the field of usability and the judgment capacity of health consumers relating to online health information. These dimensions were as follows: finding online information relating to symptoms and treatments; the advantages and disadvantages of different treatment options; finding online information on epidemics; retrieving medication-related information; emergency department access; assessing the reliability of social media, vaccination, and diet-related data; and the ability to obtain appropriate information to decide when to visit a physician for a regular checkup. In general, our MOOC learners found it easy to search and find health information but found it difficult to judge the
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reliability of the information they found online. Our study and the study of Diviani et al. [16] highlight the importance of consumer health literacy in this regard. Diviani et al. reported that when health information seekers have low health literacy and other related skills, this lack of skills influences how they evaluate and trust online health information. The authors concluded that the topic of health literacy has been largely ignored and is need of more scholarly attention. Feufel and Stahl [17] also conducted a study on health information literacy comparing younger, more educated, and more expert Web users to an older group of participants that were less educated and less experienced with the use of the Internet. We hypothesized that two types of interventions can be used to help improve access and judgement of good-quality online health information. Basically, these would involve improving overall Internet search skills and training on how to evaluate the evidence of health claims. Our study is similar to those of Diviani et al. [16] and Feufel and Stahl [17] in that they all suggest that health consumers need support in enhancing their ability to search for credible and trustworthy health information Although organizations like Health on the Net (HON) have developed criteria to assess the reliability and trustworthiness of online health information, not all health sites are evaluated, and some may place the HON logo on their site without approval from this organization [18]. Furthermore, there is continuing debate on the appropriate rating tools for evaluating the reliability of online health information and how to create good-quality health information [19]. In our opinion, more attention should be paid into improving the skillsets of health information seekers, and MOOC offers a good opportunity to do so.
[11] Craan, F. and D.M. Oleske, Medical information and the Internet: do you know what you are getting? J Med Syst, 2002. 26(6): p. 511-8.
[12] AlGhamdi, K.M. and N.A. Moussa, Internet use by the public to [13] [14] [15] [16] [17] [18] [19] [20] [21]
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