On Social Media in Health Literacy

Article ID: WMC002936 ISSN 2046-1690 On Social Media in Health Literacy Corresponding Author: Prof. Maged N Kamel Boulos, Associate Professor, Facul...
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Article ID: WMC002936

ISSN 2046-1690

On Social Media in Health Literacy Corresponding Author: Prof. Maged N Kamel Boulos, Associate Professor, Faculty of Health, University of Plymouth - United Kingdom Submitting Author: Prof. Maged N Kamel Boulos, Associate Professor, Faculty of Health, University of Plymouth - United Kingdom

Article ID: WMC002936 Article Type: Review articles Submitted on:28-Jan-2012, 04:21:37 PM GMT

Published on: 29-Jan-2012, 11:12:10 AM GMT

Article URL: http://www.webmedcentral.com/article_view/2936 Subject Categories:HEALTH INFORMATICS Keywords:Social media, Health literacy How to cite the article:Kamel Boulos M N. On Social Media in Health Literacy . WebmedCentral HEALTH INFORMATICS 2012;3(1):WMC002936 Copyright: This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited. Source(s) of Funding: None. Competing Interests: The author declares that he has no competing interests.

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On Social Media in Health Literacy Author(s): Kamel Boulos M N

Abstract This short, non-exhaustive article considers health literacy in the era of the Social and Mobile Web. We briefly discuss with some examples the important role that social media are playing today in health literacy, the associated risks, and the workarounds to mitigate those risks. We conclude by providing some guidelines and pointers to key online resources and bibliography about the subject.

Introduction In 2011, about 30.2% (2.1 billion) of the world’s population had access to the Internet (78.3% of North America’s and 58.3% of Europe’s populations) [1], and searching for health information online became increasingly common; for example, about two-thirds of US adults look online for health information according to figures released in 2010 by the Pew Internet & American Life Project [2,3]. Large proportions of adults in developed countries have limited health literacy skills (even among native, non-immigrant communities and some university graduates) [4]. For example, in the USA, 88% of adults do not have the necessary skills to manage their health and prevent disease, according to the US ‘2003 National Assessment of Adult Literacy (NAAL)’ survey [5]. In 2004, the US Institute of Medicine (IOM) published a shocking video (available on YouTube at [6]), based on their report released in the same year and entitled ‘Health Literacy: A Prescription to End Confusion’ [7]. Internet users include people with limited health literacy skills, although a US ‘2007 Health Information National Trends Survey’ found that Internet users tended to be more educated, with higher income, and preferred numbers rather than words to describe chance [8]. There have been many definitions of ‘health literacy’ [9], but for the purpose of discussing the role of social media in health literacy, we will refer to the following working definition of health literacy from the US Department of Health and Human Services’ report ‘ Healthy People 2010’ [10]: “The degree to which individuals have the capacity to obtain, process and understand basic health information and services needed to make appropriate health decisions”.

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Skills needed for health literacy on the Internet include all the conventional health literacy skills, in addition to computer and Internet literacy skills, and skills for locating and appraising online health information [11]. But having access to the Internet and mastering the essential computer and Web skills does not automatically guarantee that a person will be able to properly evaluate and understand online health information.

Role of social media Social media and social networking now reach four out of five (i.e., 80% of) active Internet users in the USA, according to a Q3 2011 report by Nielsen [12]. Using the above definition of health literacy, social media can potentially improve users’ capacity to (1) obtain, and (2) process and understand health information and services needed to make appropriate health decisions. But it is particularly the first of these two capacities, the capacity to obtain/access health information, which can be immediately improved by social media. The second capacity to process and understand health information depends on factors that vary widely across the Web, namely the content quality and presentation of online health information and the degree they match the needs and health literacy levels of target audiences. Viral social marketing (reaching out to many more people, more quickly and with minimal costs, compared to other forms of marketing/advertising) is among the strongest aspects of social media and can play an important role in health education, promotion and outreach programmes [13]. For example, viral marketing and other social media techniques have been successfully used to promote condom use in Turkey [14]. Online social networks and participatory communication methods can also provide excellent opportunities for peer-to-peer support (patients and members of the general public supporting each other) [15,16] (Figure 1), and thus contribute to reducing the burden on conventional healthcare systems. m-health (mobile health) A Morgan Stanley presentation published in 2010 is predicting that mobile Web access via smartphones and other small form factor Internet devices, such as the Apple iPad and clones of small touch-screen tablets, will overtake conventional desktop Internet use by 2015 [17]. UK mobile Internet use is already

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nearing 50%, according to a 2011 ONS (Office for National Statistics) report [18]. Smartphones and their applications or ‘apps’ (e.g., Figure 2) are rapidly and radically transforming healthcare, particularly the care of patients with long-term conditions, enabling it to become more mobile at the point of need and more participatory by engaging all involved stakeholders, including patients, non-clinical carers, the general public, clinicians and various organisations [19-22]. The potential of many of the available and planned specialised mobile apps in reducing healthcare costs and improving clinical outcomes is huge [23,24]. The reader is referred to [25-32] for an overview of the different types of social media available today and a more thorough discussion of the potential roles that social media, including 3-D virtual worlds such as Second Life® [27,28], can play in health literacy, education and ‘crowdreaching’ [32]. However, a discussion of the use of social media for health literacy purposes remains incomplete without also addressing the potential risks, pitfalls and workarounds that are involved in the process

Risks of social media and workarounds Social media pose higher risks compared to other conventional media (e.g., TV and print material), due to the much wider outreach of the Social Web and its partly uncontrollable/non-moderated nature (‘anyone can publish whatever they want’). The risks include spreading misinformation (very rapidly through viral messages and videos/e-WOM—Electronic Word of Mouth and/or through hacked/compromised social media accounts [33]), disseminating biased or incomplete (and thus potentially risky) information—see, for example, [32,34-39], or publishing information that is hard to understand by its intended audience or is presented in such a way that makes misunderstanding a likely possibility (misunderstanding can have serious negative consequences—see, for example, [6]). There is no easy way to remove or stop all the ‘bad’ information out there, but we can always provide and advertise good information and educate people about, and expose, misleading online material (or representative examples of it). Consumer education can be effectively done using the same social media tools, while “pushing” plenty of good material can be achieved by creating trustworthy social media channels for this purpose, and socially marketing these channels; see, for example, the official NHS Choices (National Health Service in England) and US

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CDC (Centers for Disease Control and Prevention) channels and special campaigns on Facebook [40,41]. (The NHS in England/DH (Department of Health) also spent £2.7m on a Google AdWords campaign in 2009/2010 to promote NHS Choices, but a few groups criticised them for doing so [42].) However, with users being able to freely write text and post comments on an organisation’s social media presence, e.g., on a Facebook ‘Wall’, maintainers of social media pages should regularly monitor and moderate their content for any forms of spam, abuse or patient privacy violations (turning off all user posting/commenting is not a good option as this will remove the ‘social’ from social media). Account admins should also protect their presences with strong passwords to avoid their accounts getting hacked by spammers [33]. Other workarounds and strategies include connecting social-media technologies to evidence-informed online resources, matching new applications with the correct user populations, and integrating health communication best practices, including addressing health literacy issues in the relevant social media content [4,30,31]. Organisations should allocate sufficient personnel time and resources to look after their social media presences (this can be a very demanding task), and develop and enforce clear policies and guidelines regarding what their members of staff can post on various social media [25].

Guidelines and resources Social media content and choice of medium (e.g., using a blog article vs. a YouTube video vs. using both media vs. a dedicated mobile app, etc.) need to be tailored to suit the profiles and preferences of target audiences and their ‘reading with understanding’ levels. Involving representatives from the target audiences in planning, implementing, disseminating and evaluating online health information and services is of prime importance [4]. A strategy based on ‘shared-audience information sets’ (based on evidence-based material originally compiled for clinicians) [43] can be adopted to maximise the efficiencies of content authoring and delivery vs. varying degrees of patient literacy, from the ‘expert patient’ to the completely illiterate layperson (Figure 3). The US CDC offers a number of excellent health literacy, social media and social marketing training materials, guidelines and toolkits that can prove very helpful to social media content developers and public health practitioners in general [44-47] (Figure 4).

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Coda Today, the question is no longer whether or not to use social media (among other tools) for health literacy purposes. Rather, the question is which social media to target (within available budget and resources) and how to best do so. With more than 800 million active Facebook users (half of them log on each day) [48] and 100 million active Twitter users [49], healthcare and public health organisations cannot afford to ignore social media as a powerful means for reaching out to their stakeholders, including patients, lay carers, and the general public. Health organisations should go where people already are online (on social media), rather than just build their own isolated Web islands of ‘read-only’ information and expect people to come and visit. Illustration legends Figure 1. Run jointly by UCLA School of Public Health and Health Net, Inc. in the United States, T2X (Teen2Xtreme - http://www.t2x.me/) offers a Facebook-linked, teen-only community of users, with teen and professionally produced content, competitions, games, quizzes, blogs, (YouTube) video sharing and other interactive and participatory communication methods. T2X covers lifestyle issues for teens, such as nutrition, fitness, stress management, substance abuse and sexual behaviour [16]. Figure 2. The Plain Language Medical Dictionary iPhone app from the University of Michigan's Taubman Health Science Library converts medical language jargon into everyday English. The app is free (http://itunes.apple.com/us/app/plain-language-medica l-dictionary/id443405990?mt=8). Figure 3. Shared-audience information sets for maximising the efficiencies of content authoring and delivery vs. varying degrees of patient literacy from the expert patient to the completely illiterate layperson (by the author; originally published in [43]). Figure 4. Screenshots of a US CDC online course (free) entitled ‘Health Literacy for Public Health Professionals’ [46].

References/bibliography 1. World Internet Usage Statistics News and World Population Stats. Miniwatts Marketing Group, 31 March 2011. Available at http://www.internetworldstats.com/stats.htm 2. Fox S, Jones S. The social life of health information. Pew Internet & American Life Project, June 2009. Available at

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http://www.pewinternet.org/Reports/2009/8-The-Social -Life-of-Health-Information 3. Fox S. Crowdsourcing a Survey: Health Topics (Commentary). Pew Internet & American Life Project, July 2010. Available at http://www.pewinternet.org/Commentary/2010/July/Cr owdsourcing-a-Survey-Health-Topics.aspx 4. Kamel Boulos MN. British Internet-derived Patient Information on Diabetes Mellitus: Is it Readable? Diabetes Technology & Therapeutics. 2005 Jun;7(3):528-35. http://dx.doi.org/10.1089/dia.2005.7.528 5. National Assessment of Adult Literacy (NAAL) What is NAAL? Available at http://nces.ed.gov/naal/ 6. IOM Health Literacy Video. Available at http://www.youtube.com/watch?v=39A9oU-gOOA 7. Nielsen-Bohlman L, Panzer AM, Kindig DA, eds. Health Literacy: A Prescription to End Confusion. Washington, DC: Board on Neuroscience and Behavioral Health, Institute of Medicine, National Academies Press, 2004. Available at http://www.nap.edu/openbook.php?isbn=0309091179 8. Koch-Weser S, Bradshaw YS, Gualtieri L, Gallagher SS. The Internet as a Health Information Source: Findings from the 2007 Health Information National Trends Survey and Implications for Health Communication. Journal of Health Communication. 2010; 15(S3):279-293. http://dx.doi.org/10.1080/10810730.2010.522700 9. Berkman ND, Davis TC, McCormack L. Health Literacy: What Is It? Journal of Health Communication. 2010;15(S2):9-19. http://dx.doi.org/10.1080/10810730.2010.499985 10. US Department of Health and Human Services. Healthy People 2010. Washington, DC: US Government Printing Office, 2000. Originally developed for Ratzan SC, Parker RM. Introduction. In: Selden CR, Zorn M, Ratzan SC, Parker RM, eds. National Library of Medicine Current Bibliographies in Medicine: Health Literacy, January 1990 Through 1999. NLM Pub. No. CBM 2000–1. Bethesda, MD: National Institutes of Health, US Department of Health and Human Services, 2000. Available at http://www.healthypeople.gov/2010/Document/HTML/ Volume1/11HealthCom.htm 11. Glassman P. Health Literacy. US National Network of Libraries of Medicine, June 2011. Available at http://nnlm.gov/outreach/consumer/hlthlit.html 12. Social Media Report: Q3 2011. Nielsen, September 2011. Available at http://blog.nielsen.com/nielsenwire/social/ 13. Gosselin P, Poitras P. Use of an internet “viral” marketing software platform in health promotion. J Med Internet Res. 2008 Nov 26;10(4):e47.

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July 2009. Available at http://www.cdc.gov/healthcommunication/ToolsTempla tes/HealthLiteracy.pdf 45. Simply Put—A guide for creating easy-to-understand materials. US CDC, April 2009. Available at http://www.cdc.gov/healthcommunication/ToolsTempla tes/Simply_Put_082010.pdf 46. Health Literacy for Public Health Professionals. US CDC online course. Available at http://www.cdc.gov/healthliteracy/training/index.html 47. US CDC Gateway to Health Communication & Social Marketing Practice. Available at http://www.cdc.gov/healthcommunication/ 48. Facebook Statistics (accessed 27 December 2011). Available at https://www.facebook.com/press/info.php?statistics 49. One hundred million voices (Twitter blog, 8 September 2011). Available at http://blog.twitter.com/2011/09/one-hundred-million-voi ces.html

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