Submited on: 28 Jan 2012 04:21:37 PM GMT
Published on: 29 Jan 2012 11:12:10 AM GMT
Author's response to reviewers
Posted by Prof. Maged N Kamel Boulos on 07 Feb 2012 08:58:35 AM GMT

Comment on Sanjoy Sanyal's brief review

 
Posted by   Prof. Maged N Kamel Boulos on 07 Feb 2012 08:23:54 AM GMT
 

I thank the reviewer for his interest in this article and the above average rating he gave to it: a rating of 6/9, which is close to the rating of 8/9 given by the other reviewer (Prof. Robert Dellavalle). According to WMC rating scale descriptions, a rating of 5 is "equivalent to an article publishable in traditional journal".

 

 

Points 1 and 2: "there is very little mention of Social Media in the article. Facebook and Twitter are mentioned briefly, and YouTube mentioned in passing. Most of the article talks about Internet usage in geneeral" and "Insifficient hard data has been provided in the context of Social Media (FB, Myspace, Twitter, YouTube etc) to  justify any sort of interpretation or conclusion with regard to their role in Health Literacy"

 

The typo ('geneeral') aside, I respectfully disagree with this point and ask the reviewer to carefully read the article again and consult the resource pointers and references that are cited throughout the paper. For example, the risks of social media and workarounds are well articulated, despite the brief nature of this article. As I mentioned in my response to another reviewer, "this article is not about (the use of) social media in health or health education in general (readers wanting to learn more about these aspects are kindly referred to the cited literature and bibliography at the end of the paper). The article is only meant to be a brief (3000 words), non-exhaustive overview of social media in the context of health literacy". Facebook, Twitter and YouTube are the main social media tools today (by number of users, e.g., 845M for Facebook alone as of December 2011, and amount of content generated/consumed) and are frequently used for social and viral marketing purposes. Moreover, as Sir Tim Berners-Lee, the inventor of the Web, would say, the Web has been conceived as a social medium and a sharing and communication platform from the very start (1991). In other words, you cannot easily separate 'Web' (Internet) and 'Social'. The Web just grew more popular (see, for example, the statistics I have provided in the 'Introduction' section and in cited literature), and more affordable and usable over the past two decades, to become what we have today and what we currently observe as the prominent social aspects and opportunities of the Web. But the core principles and concepts of online communities and users' networking and sharing, repackaging and repurposing of online content have always been there in one form or another since the very early days of the Web (e.g., the first wiki, WikiWikiWeb, appeared 18 years ago, in 1994) and even predate the Web (e.g., could be recognised in the 1980s CompuServe dialup service).

 

 

Points 3 and 4: "It is more of a view-point article" and "Instead of writing, "The reader is referred to [25-32] for an overview of the different types of social media available today", the author should discuss them"

 

Not really; again, I ask you to carefully read the article one more time to identify the factual, non-(personal)-opinion-based nature of the paper. However, I would classify this article as a brief review or overview rather than an exhaustive narrative review of the subject (the latter type is usually 7,000-12,000 words in length), but WMC does not provide the option to choose among the two when submitting papers. This article is not about (the use of) social media in health or health education in general, and as I stated in my response to Prof. Dellavalle who gave this article a rating of 8, "the article's "mandate" (as it states in the beginning) was to be a brief (3000 words), non-exhaustive review (i.e., 'a starter'), while giving carefully hand-picked "pointers to key online resources and bibliography about the subject" for those who are interested to find out more. There are 49 references/bibliography items listed at the end of the paper for readers to follow".

 

 

Point 5: "There are too many complex, and complex-compund sentences"

 

(The typo ('compund') apart,) this is a 'general/health literacy' issue related to text readability (understandability or 'cognitive accessibility' of a document). Using shorter, simpler ('plain English') sentences is always recommended, but scholarly papers and daily tabloid articles (e.g., The Sun) are not the same. The former are targeting a select audience of specialised scientists, while the latter are addressing a much broader audience (the general public) with much lower 'average reading ages'.

 

 

Point 6: "Illustration number 1 does not convey any information relevant to the text. Other illustrations are relevant, useful and illustrative"

 

Illustration 1 is meant to show how different social media have been successfully integrated into the T2X portal: you can see the Facebook login (Connect with Facebook - top right corner) and embedded YouTube video clip, as well as other social aspects such as the individual community member quotes ('What does xtreme teen mean to you?' - helps other teens relate to the service), as well as the 'Club' (http://www.t2x.me/club.aspx), 'Contests' and 'Invite Friends' (social media sharing) links near the bottom. In this way, the portal 'goes where teens already are (on the Social Web, Facebook, YouTube, etc.)', while providing a unique "wrapper", with carefully selected quotes, colours and style that would appeal to a teens audience and foster their engagement with one another and with the service content. The T2X portal (see reference #16 by Wongvipat Kalev et al.) was not publicly available until very recently (it used to run as a closed experiment, by invitation only) and this is another reason for providing a screenshot.

 

 

Point 7: "49 references for the short length of article is excessive. 20 to 25 would be adequate"

 

In this digital era of online-only journals with no print page limits, there is no reason why not to cite as many relevant references as would be useful to a mixed reader audience with different interests and information needs, and to properly link the current paper to previously published work. Moreover, the reference section in this article is also labelled as 'bibliography' and this has been done for a purpose...

 

 

Point 8: "It is necessary to mention when the author Accessed each Web-based reference."

 

This author is used to the BioMed Central style for citing Web links (no 'access date' is needed; see reason below):

http://www.biomedcentral.com/bmcmedinformdecismak/authors/instructions/researcharticle#formatting-references

Link / URL The Mouse Tumor Biology Database [http://tumor.informatics.jax.org/mtbwi/index.do]

Link / URL with author(s) Neylon C: Open Research Computation: an ordinary journal with extraordinary aims. [http://blogs.openaccesscentral.com/blogs/bmcblog/entry/open_research_computation_an_ordinary]

 

The access date is assumed to be the date the manuscript was published (as links are also rechecked one by one at this stage), unless otherwise stated in the article (e.g., for those Web pages that might have changed by the time a paper is published, offering different content than what has been cited, as is the case with reference #48 in the current article, hence the addition of 'accessed 27 December 2011' to it). This is unlike, for example, in a non-published university coursework/assignment with no formal/explicit publication date, where mentioning the 'last accessed date' becomes essential for every cited link. (BioMed Central also provides a cached snapshot of all cited Web links the way they looked at the time a paper was published using the WebCite service, but WMC does not subscribe to this service.)

 
 
Comment on SM Kadri's brief review
 
Posted by   Prof. Maged N Kamel Boulos on 04 Feb 2012 06:43:25 PM GMT
 

To answer your points:

 

The term 'Social media' refers to Social Web applications and networks such as Facebook and Twitter. The term is commonly used in the research literature (PubMed: http://www.ncbi.nlm.nih.gov/pubmed?term=%22social%20media%22) and does not include conventional print media; see, for example, reference #16: Wongvipat Kalev N, Quiter E, Prelip M, Glik D, Fiore M, Robinson-Frank E. T2X: Using Social Media to Improve Adolescents' Health Literacy. In Proceedings of IHA's 10th Annual Health Literacy Conference, 5-6 May 2011, Irvine, California. Available at http://ihahealthliteracy.org/index.php/en/poster-abstracts/doc_download/53-t2x-using-social-media-to-improve-adolescents-health-literacy

 

How to control the quality of online material available/recommendations: This is discussed under 'Risks of social media and workarounds' and is essentially done through (1) educating the general public (using the same social media tools to reach them)to critically appraise what they read and share, and by (2) creating and maintaining trustworthy social media channels for "pushing" good material (the article gives social media channel examples from the NHS in England and the US CDC).

 

This article is not about (the use of) social media in health or health education in general (readers wanting to learn more about these aspects are kindly referred to the cited literature and bibliography at the end of the paper). The article is only meant to be a brief (3000 words), non-exhaustive overview of social media in the context of health literacy. This is a very timely topic; the most recent figures show that almost half of Europeans (47%) have limited health literacy: http://www.euractiv.com/health/health-literacy-helping-patients-help-linksdossier-496951?display=normal

 

Mobile apps in low and mid-income countries: Reference #32 (http://dx.doi.org/10.1186/1476-072X-10-67), for example, mentions InSTEDD RemindEm http://remindem.instedd.org/, a free 'crowdreaching' tool that can target the simplest mobile phones using plain text messages. It is the content/language of those text messages that would matter the most in the context of health literacy ('reading with understanding'). Reference #4 (http://dx.doi.org/10.1089/dia.2005.7.528) discusses these readability aspects in detail.

 

Thank you for declaring 'No' under 'Publications in the same or a related area of science'.

 
 
Comment on Prof. Robert Dellavalle's note
 
Posted by   Prof. Maged N Kamel Boulos on 03 Feb 2012 10:29:28 AM GMT
 

I am glad the article "left you wanting more", which means it helped arouse the reader's interest. However, the article's "mandate" (as it states in the beginning) was to be a brief (3000 words), non-exhaustive review (i.e., 'a starter'), while giving carefully hand-picked "pointers to key online resources and bibliography about the subject" for those who are interested to find out more. There are 49 references/bibliography items listed at the end of the paper for readers to follow!

  • Invited by the author to make a review on this article? :
  • Experience and credentials in the specific area of science: None
  • Publications in the same or a related area of science: Yes
  • References: None
 
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Author's response to reviewers (2)
Posted by Prof. Maged N Kamel Boulos on 16 Feb 2012 12:01:07 PM GMT

I thank the reviewer for taking the time to write these points and enrich the debate with additional pointers and references. I am glad she does not believe that “there is not enough new information in this paper”. (As a side note, a ‘double negative’ might be fine in scholarly writing (use of two negatives in same sentence, so that they cancel each other and affirm a positive), although in the context of health literacy (writing for patients and the general public) and ‘plain English’ consumer health information, I would avoid using a double negative.)

 

The reviewer declares she has no ‘publications in the same or a (directly) related area of science’. Even though reviewers with immediate expertise (and publications) in the topic of a refereed article are often regarded as an advantage, I believe that having a reviewer pool with a broader (generalist) range of expertise can additionally help ensure that a paper is viewed and assessed from different perspectives (to reflect the variations that are often seen in the target readership).

 

Reviewer: The citations in the first paragraph refer to technology use in general. The author uses the term social media, which denotes collaboration and the co-creation of new knowledge.

 

Response: The first paragraph serves as an introduction to the growing penetration and importance of the Internet (the “container” of the Social Web) as a source of health information. The Social Web is definitely (a big) part of this and is probably the most widely used component and most popular aspect of the Internet today. According to recent figures from Nielsen (see reference #12), people (in USA) now spend more time on Facebook (53.5 billion minutes a month) than on Yahoo!, Google, YouTube, Blogger, Tumblr and Twitter combined. Most of the latter Web sites used in that comparison with Facebook also belong to the Social Web. (In addition to this, the Social Web is growing in popularity among older generations according to recent Pew Internet findings (http://tinyurl.com/6olbxjb), so it is not just for young adults and teens.)

 

Social media penetration is then explicitly mentioned later in the article: “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]” and key literature and examples are properly cited, which specifically cover the Social Web (and unique aspects of it such as ‘viral social marketing’) rather than technology or the Internet in general.

 

 

Reviewer: In the second paragraph it is identified that the focus will be on heath literacy. In relation to social media and m-health it may have been useful to also include an acknowledgement of a concept known as eHealth literacy.

 

Response: Norman and Skinner’s (2006) concept of ‘eHealth Literacy’ is a renaming of an old concept (‘health literacy in the Internet/WWW age’; see, for example, reference #4 by Kamel Boulos (2005): http://dx.doi.org/10.1089/dia.2005.7.528 and the references cited by it). Their ‘Lily Model’ is a nice graphical way to depict the well-known hierarchy of skills that are involved in health literacy. In the ‘Introduction’ of my short article, I am already stating the following: “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”.

 

 

Reviewer: In the section, "Risks of social media and workarounds" the first sentence defines risks in terms of the spread of 'misinformation'. This concept in relation to ehealth has been discussed in the literature for many years, generally using the term "credibility".

 

Response: I respectfully disagree with the reviewer on this (terminology) point. ‘Misinformation’ and ‘credibility’ are two distinct terms, related but not the same. ‘Misinformation’ describes the distortions or flaws in information (errors, inaccuracies and incomplete/missing critical information). But unlike ‘disinformation’, the motive behind ‘misinformation’ is generally not malicious or intended to mislead. Credibility on the other hand refers to the expertise/credentials, authority and trustworthiness of the source of information, which affect our ‘believability’ of that source and their information. On the Social Web, the ‘source’ is often omitted or lost (e.g., in retweets, where only a limited number of characters, 140, are allowed) and the information is sometimes paraphrased in a way that distorts the original message or takes it out of its intended context. We discuss these issues in detail in reference #32 by Kamel Boulos et al. (2011): http://dx.doi.org/10.1186/1476-072X-10-67, and we do so in the specific context of social media rather than in relation to technology-based health information in general. I am glad to see that the reviewer has already tweeted that particular paper (reference #32) yesterday to her 500+ Twitter followers: http://twitter.com/#!/ogradylaura/status/169850303003377664.

 

 

Reviewer: In reference to misunderstandings please see the following article for some evidence in how this issue is often corrected by the community itself

 

Response: The concept of self-correction by the community (‘Darwikinism’) is also very well covered in the above mentioned reference #32, as well as in reference #26 by Kamel Boulos and Wheeler (2007): http://dx.doi.org/10.1111/j.1471-1842.2007.00701.x and in one of our earlier papers back in 2006: http://dx.doi.org/10.1186/1472-6920-6-41.

 

 

Reviewer: "Bad" information is everywhere. This point could have been more strongly made if citations had been provided on how many instances there have been showing patiens have been negatively affected by information they have read on the Internet (and proof it is only the Internet was the source).

 

Response: The article is already providing many citations and examples of social media misinformation and disinformation (references #33 to 39), but finding peer reviewed literature documenting (negative) individual patient experiences in this respect will always be hard. Some of the cited studies documented the popularity of negative information on social media, e.g., number of ‘likes’ or YouTube ‘views’, which may serve as a crude proxy for the impact of such information. The reviewer is kindly referred to reference #39 about HPV vaccine coverage on YouTube: http://dx.doi.org/10.1080/10410236.2011.610258, as well as to the discussion in our 2008 paper (reference #34) on the ‘Scope, completeness, and accuracy of drug information in Wikipedia’ at http://dx.doi.org/10.1345/aph.1L474.

 

The ‘viral nature’ of the Social Web means that (mis)information can travel and get boosted (‘water ripple effect’) very fast, especially during times of ‘mass stress’ (there is an interesting piece at http://www.poynter.org/latest-news/making-sense-of-news/144848/social-media-editor-role-expands-to-include-fighting-misinformation-during-breaking-news/). A person might read and act/make decisions based on the wrong or incomplete information in a way that causes harm, before that information gets corrected by the community (or without the person also finding/seeing any corrections that followed the original message; the Internet is very vast and can be confusing or hard for some users to navigate and locate/track related pieces of information). For this reason, lawyers will frequently identify this as a ‘liability’ issue that requires careful attention by online health information providers, particularly those sites that include Social Web elements (see also my note on HONcode below).

 

 

Reviewer: Regarding the list of organizations in the section, "Risks of social media and workarounds" I think Health on the Net should also be included.

 

Response: The NHS in England and the US CDC channels (and their anti-tobacco campaign examples) on Facebook (references #40 and 41) are provided as model examples of mature social media channels created and maintained by trustworthy organisations (for example, the US CDC main presence on Facebook had more than 180,000 ‘likes’ as of February 2012). HON is mainly a code of ethics (including a version specially tailored for social media sites: http://www.hon.ch/cgi-bin/HONcode/guidelines_comments_en.pl), with an associated search engine of HON-certified sites. It is not a social media outlet per se, although they have their own fledgling social media presences on Facebook (less than 1000 ‘likes’ as of February 2012) and Twitter, which might cover some public/patient education topics and can potentially play a role in teaching consumers how to critically appraise online health information and in guiding them to where they can find good information online.

 

HONcode is a code of conduct rather than a true quality benchmarking tool (see our 2001 paper on the topic at http://dx.doi.org/10.2196/jmir.3.1.e5), and while their search engine for HON-certified sites can be useful, user information seeking behaviour on the Internet is witnessing rapid and significant changes these days. The role of conventional search engines has been shaken,* with users now increasingly discovering new information through Facebook and other social media outlets (e.g., themed signposting by other users on Scoop.it) in place of searching using ‘old-fashioned’ classic search engines.

 

(*As I always tell my colleagues and students these days, “searching and learning on the Web are now crowdsourced. We ask people; we interact with real, intelligent people. We follow people on Twitter and create specific lists for this purpose. We source our information in many different ways. ‘Signposting’ is the name of the “new” (Social Web) game, but wasn’t this the librarian’s or teacher’s classic duty in the old good days before search engines and the Web? Now humans are back on the driving seat, but the Social Web has unprecedented powers in ‘amplifying’ what a single human can say or teach”.)

 

 

Reviewer: In reference to, "maintainers of social media pages" please see this article as it provides more information about how online communities can be "maintained" by the use of facilitators

 

Response: Social media moderation is not really the main focus of this brief article, but is also well covered elsewhere in the literature that the paper is citing, including in reference #26 by Kamel Boulos and Wheeler (2007): http://dx.doi.org/10.1111/j.1471-1842.2007.00701.x, as well as in http://dx.doi.org/10.1186/1472-6920-6-41. It should be noted that moderation and facilitation of conventional Web forums/groups and discussion boards/lists are not exactly the same as moderating Facebook walls and Twitter feeds, as the latter forms of social media pose their own additional set of challenges.

 

 

Reviewer: In the section that states, "A strategy based on ‘shared-audience information sets’…

 

Response: Full details about what is meant by ‘shared-audience information sets’ can be found in the cited reference #43 by Kamel Boulos et al. (2006): http://dx.doi.org/10.1016/j.cmpb.2006.07.003.

 

 

Reviewer: Figures 1 and 2 do not add much value to the premise of the paper.

 

Response: I have explained the value of Figure 1 in my response to another reviewer (my explanation is quoted again below). Regarding Figure 2, this is directly related to the main focus of this article on ‘health literacy’ (‘plain English’ health information) in the era of the Social and Mobile Web. The app shown in Figure 2 can be a very useful tool in this context. The few terms shown in this screenshot of the app, such as ‘abdomen’,’ ability’, ‘absorption’, and ‘accelerate’, remind us, clinicians and scholars with a professional background, how such terms that we treat as easy, simple, and self-explanatory can be a source of confusion for many other people, even highly literate people, hence the importance of such online dictionary apps and tools. For example, the word ‘unsweetened’ could cause much confusion to diabetic patients with low reading skills (such readers may only recognise the ‘sweetened’ part in ‘unsweetened’ and skip the ‘un’, thus leading to the opposite behaviour (see http://www.pfizerhealthliteracy.com/media/WordsToWatch.aspx and reference #4 by Kamel Boulos (2005): http://dx.doi.org/10.1089/dia.2005.7.528).

 

Figure 2 is also about a smartphone app. One important aspect of the Social Web is that people can now easily share, rate, recommend and find software applications or ‘apps’ about almost any topic under the sun (see, for example, reference #19 by Kamel Boulos et al. (2011): http://dx.doi.org/10.1186/1475-925X-10-24). Before the advent of smartphones, tablets and operating systems and Web browsers that support the concept of apps and associated app stores or markets, downloading and installing software was not as easy or popular as it is today. Again, this is one of the most important changes introduced by the growing popularity and usability of the Social Web and mobile Internet devices (sales of smartphones are said to have overtaken PCs in 2011: http://t.co/3tg5e7YA).

 

Figure 1—From my earlier response to another reviewer: Illustration 1 is meant to show how different social media have been successfully integrated into the T2X portal: you can see the Facebook login (Connect with Facebook - top right corner) and embedded YouTube video clip, as well as other social aspects such as the individual community member quotes ('What does xtreme teen mean to you?' - helps other teens relate to the service), as well as the 'Club' (http://www.t2x.me/club.aspx), 'Contests' and 'Invite Friends' (social media sharing) links near the bottom. In this way, the portal 'goes where teens already are (on the Social Web, Facebook, YouTube, etc.)', while providing a unique "wrapper", with carefully selected quotes, colours and style that would appeal to a teens audience and foster their engagement with one another and with the service content. The T2X portal (see reference #16 by Wongvipat Kalev et al.) was not publicly available until very recently (it used to run as a closed experiment, by invitation only) and this is another reason for providing a screenshot.

 

 

Reviewer: what is it about social media (as opposed to ehealth or web 1.0 that requires more (or less) health literacy?, what is unique about the way social media works in a health care context that can facilitate literacy

 

Response: The reviewer is kindly referred again to the article. After quoting a commonly used standard definition of health literacy [10], I stated the following (using the same verbs used in the definition): “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”. I then proceeded to briefly discuss the challenges (as well as opportunities) associated with the Social Web and its ‘viral’ properties.

 

(Please note how I am now avoiding in all my writings the terms ‘Web 1.0’ and ‘Web 2.0’ (versioning the Web), since the Web was always meant to be social since ‘day 1’ (1991). The technology has just evolved and become more mature, usable, affordable and (therefore more) popular over the years, but the core principles and concepts of online social communities and users’ networking and sharing, repackaging and repurposing of online content have always been there in one form or another since the very early days of the Web (e.g., the first wiki, WikiWikiWeb, appeared 18 years ago, in 1994) and even predate the Web (e.g., could be recognised in the 1980s CompuServe dialup service).)

 

 

Reviewer: This article provides a start but would have benefited greatly from a literature review.

 

Response: I see this article more as an introductory Editorial, the first piece (brief overview) in a multi-author ‘special issue’ or book about the subject (to be completed by others and maybe this author, as time permits). I just wanted to experiment with WMC’s platform upon Kamal Mahawar’s (CEO of WMC) personal invitation to me to join their WMC Plus Board and Faculty.* I noted the absence of a ‘health informatics’ section at that time and when I asked Kamal, he kindly had it added. But as I don’t have enough time left for me to undertake additional editorial tasks these days (become responsible for the new section),* I told him I will just upload a short ‘seed article’, as an experiment and as a gesture of support to their effort, hoping that this will help getting the new section populated by attracting further submissions from other parties. (*I take such editorial tasks seriously, and not just as honorary ‘do nothing’ titles.)

 

If the reviewer is looking for a recent ‘mega-literature review’ and more about social media in health and healthcare that is not just focused on health literacy, I suggest that she consults reference #25 by Kamel Boulos (2011), which consists of a long expert paper and several accompanying appendices and presentations that were commissioned by the WHO EURO/Graduate Institute Geneva as part of a larger study on ‘Governance for Health in the 21st Century’ to inform the European Health 2020 Policy.

 

__________________

P.S. Punctuation erratum: In the formatting of my paper by the WMC platform, I note that a period is missing at the end of the last sentence in the section entitled ‘Role of social media’ (the sentence that reads “…remains incomplete without also addressing the potential risks, pitfalls and workarounds that are involved in the process”).

  • Invited by the author to make a review on this article? :
  • Experience and credentials in the specific area of science: None
  • Publications in the same or a related area of science: Yes
  • References: None
 
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