The Information Prescription Part Five: Knowing the Options

14Nov12

In choosing a site or sites to recommend or use, it’s important to know something about the range of options available. I’ve categorized the kinds of sites into four categories:

  • social networking sites,
  • blogs,
  • health monitoring sites
  •  informational websites

The lines between the different types of sites tend to blur. Most social networking sites have a blog as one of their features. Blogs will have connections to informational websites and social networking sites. Health monitoring sites will have connections to other sites as well. This isn’t surprising; web 2.0 is about connections (see my May 22 post). Nevertheless, all have their uses and it’s important to understand the range of online resources available and their strengths and drawbacks.

Social Networking Sites

Weitzman et al. (2011) defined social networking sites as “internet-based social systems that allow a distributed community of individuals to connect, communicate and share information, and establish a stable personal identity or profile by which individuals can be recognized and connect to other individuals, groups or collectives” (p. 292). Pew Internet defines online social networks as spaces on the internet where users can create a profile and connect that profile to others (individuals or entities) to create a personal network (Lenhart, 2009).  These interaction-focused sites are arguably better options for people seeking an online community than blog communities. In fact, sites targeted to a single disease state and a very specific population may be the best options for people looking for an online community because of the enhanced opportunities for interaction.

Social networking sites may be standalone sites or hosted on a platform such as Facebook. The primary difference between a standalone site and one hosted on Facebook is how individuals are identified: on Facebook, a person is mostly likely identified by their real name and not a user name that masks their personal information. Also on Facebook, a person participating on a page can be traced back to their home by any other Facebook member, and depending on the privacy options chosen by the individual, others they don’t know may be able to access a significant amount of  personal information including where they live, went to school, work, etc. Standalone sites often reproduce the ease of interactivity of Facebook with its likes and easy interaction within the safety of a ‘gated’ community. (See my previous post for an expanded discussion on the use of Facebook as a hosting site.)

Facebook dominates social media use, with two-thirds of online adults using the site (Brenner, 2012). Other popular social media platforms include Twitter and Pinterest. Twitter can be an excellent information gathering tool by following interest groups or thought leaders.  Its strength for many lies in its ability to provide access to trending information on topics of interest. The 140 character limit per each tweet may seem brief, but conversation is often lively and a search by keyword on Twitter can be a good way to access the latest developments on any topic.

As for Pinterest, think of it as an electronic bulletin board where people ‘pin’ photos and info that they find interesting, amusing or descriptive of their life. Google search ‘diabetes pinterest’ and you’ll get a quick introduction into the visual richness Pinterest holds. Both Twitter and Pinterest allow members to participate with a user name.

YouTube is another social networking platform where people with chronic diseases are sharing information and providing understanding and emotional support. People create and post videos on YouTube, but there is an active community of people who comment as well. Video can be a powerful way to communicate and as the cost of producing video is reduced, more people can become producers of material. As well, video can be a preferred way to learn, particularly for people who don’t like to or have difficulty reading. Video can help overcome issues of health literacy by providing information in a verbal/visual format. Videos are available in many languages as well.

Here are two examples sourced through Dr. Blumer’s website http://www.ourdiabetes.com/:

 Both offer valuable perspectives and ways of dealing with diabetes.

 Blogs

Kolari, Finin and Joshi (2006) describe blogs as websites with dated entries in reverse chronological order. They are commonly personal or organized around a particular topic of interest. Blogs may have one or more contributors, but members are generally not contributors of articles and are limited to commenting. Membership is usually optional unless someone wants to post a comment, unlike social networking sites where many features are often available to members only.

Martin-Nieme and Greatbanks (2010) explain that blogs have largely replaced discussion boards and newsgroups. It can be useful to think of blog sites as online magazines with one or more contributors where people can make editorial comments.

While blogs are social media because of the opportunity to post comments, the number of comments made by people reading blogs appears low in comparison to social networking sites. Martin-Nieme and Greatbanks (2010) cite Baumer et al.’s finding that people felt part of a blog community even if they never commented (p. 12). Leaving comments is a secondary activity in a blog community. Blogs have as their main purpose the provision of information, with interaction and sense of community as an important, but secondary, feature. Further, the credentials of bloggers vary widely, as does the veracity of information. In a study on Finnish blogs on dietary issues, Savolainen (2010) found that the blogs were sources of support that emphasized sharing experiences and opinions, and not primarily sources of factual information. Nonetheless, many, if not most, are informative and engaging.

Informational Websites

Websites that primarily provide information have a primary goal of curating information and making it accessible to anyone interested in the organization or subject. For example, organizations such as the Canadian Diabetes Association have websites that are primarily informational. On informational websites, people are not encouraged to comment and there are no logins or membership requirements. Contacting the organization is generally limited to an email address provided under a “Contact Us” information page.

Health Monitoring Sites

These are sites that can be used to track health, lifestyle and fitness information. Some are websites and others are apps which can be downloaded to tablets or mobile devices and used to track weight, exercise, food intake, blood sugars, etc. Fox (2011) cites Pew research that found wireless users (generally smartphones and tablets) are more likely to track health data online, however, more than one in four adult internet users had tracked data online, either on a mobile device or a desktop.

The choices are many: a search of iPhone apps using the search term ‘diabetes’ turned up 541 options. A Google search using the phrase “most popular diabetes app” brought up many reviews done by dietitians, users and app creators. Apps can be social or not, depending on whether the user wants to connect with others. I use an app called “Map My Dogwalk”, and while I could share information on Facebook by enabling that feature, my dog and I choose to walk alone.

One desktop option for people with diabetes is PCMDR.ca, a Canadian website that offers free storage of personal health information, along with a blog and forum that members can utilize. The site endorses the Declaration of Health Data Rights from the Society for Participatory Medicine, which provides insight into the site’s philosophy:

  1. Have the right to our own health data.
  2. Have the right to know the source of each health data element.
  3. Have the right to take possession of a complete copy of our individual health data, without delay, at minimal or no cost; if data exist in computable form, they must be made available in that form.
  4. Have the right to share our health data with others as we see fit.

 The different types of sites offer different experiences and information. The key is finding those that work for the individual. In my next post, I’ll provide some pointers on what to consider and a review of some options. 

References

Brenner, J. (2012, November 13).Pew Internet: Social Networking (full detail). Accessed November  14, 2012 at http://pewinternet.org/Commentary/2012/March/Pew-Internet-Social-Networking-full-detail.aspx

Kolari, P., Finin, T., & Joshi, A. (2006). SVMs for the blogosphere: Blog identification and splog detection. American Association for Artificial Intelligence Proceedings. Accessed at http://www.aaai.org/Papers/Symposia/Spring/2006/SS-06-03/SS06-03-019.pdf

Lenhart, A. (2009, January 14). Pew Internet Project Data Memo. Accessed October 29, 2012 at http://www.pewinternet.org/~/media/Files/Reports/2009/PIP_Adult_social_networking_data_memo_FINAL.pdf.pdf

Martin-Niemi, F. & Greatbanks, R. (2010). The ba of blogs: enabling conditions for knowledge conversion in blog communities. Journal of Information and Knowledge Management Systems, 40(1), pp. 7-23.

Savolainen, R. (2010). Dietary blogs as sites of informational and emotional support. Information Research, 15(4). Accessed from http://dialnet.unirioja.es/servlet/articulo?codigo=3648464

Weitzman, E., Cole, E., Kaci, L., & Mandl, K. (2010). Social but safe? Quality and safety of diabetes-related online social networks. Journal of American Medical Informatics Association 2011; 18, pp 292-297.

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