The Information Prescription Part Six: Weighing the Options

14Nov12

Understanding the range of resources and platforms on the web is critical when advising people about the kinds of opportunities they will find there for support, information and resources. Using the categories developed by Rozen et al. (2012) described in Part Four of the Information Description, here are some starting points for thinking about what information to prescribe to whom:

  • The “no show” who can’t see the point of Facebook or Twitter may benefit from starting to access blogs, which are more like a newsfeed and could act as a non-threatening way for them to get information and start to feel connected with a community.
  • “Newcomers”, “onlookers” and “cliquers” may benefit from being directed to social networking sites for people with which they share a chronic condition in addition to the communities of which they are already aware.
  • “Sparks” and “mix-n-minglers” will be way ahead of everyone else and able to offer a lot of insights into good resources.

Site Reviews

The internet has been rightly criticized as providing a lot of misinformation and even dangerous information. Those are good reasons to be cautious and a compelling call to action to providers to assist patients in becoming discerning consumers and participants. That means understanding what’s on offer.

 Despite having spent months looking into the use of the internet for people with chronic conditions, I know that I have only scratched the surface or perhaps have only begun to see where the surface might actually begin. Providers need to accept that when it comes to online communities for their patients, they are unlikely to ever know more than a bit about what’s on offer.

In researching social networking sites, I took a personal approach by searching the way I would usually look for personal information. I first looked for a Canadian site using the phrase “Canadian diabetes sites” on Google, assuming that this was likely the way that most people would begin their search. Three were recommended at http://www.dummies.com/how-to/content/best-diabetes-web-sites-for-canadians.html; all were more informational than oriented towards social networking, which got me looking further.

  • Dr. Ian Blumer’s site offers general information and advice about diabetes, tips, new developments, and answers to questions. (Dr. Blumer’s biography notes that he wrote Diabetes for Canadians for Dummies. )
  • The Canadian Diabetes Association’s looks at diabetes issues from a Canadian perspective. Particularly helpful is the listing of resources available in your province or territory or even within your community, but again, it wasn’t an interactive community building site. For that, the Association appears to rely on its Facebook page.
  • The Juvenile Diabetes Research Foundation of Canada also provided information, but again, not a community building experience nor with  opportunities for interaction with other diabetics.

Further searches turned up social networking sites:

  • The Diabetes Care Community. The Community is a Canadian site that blends the informational and interactive aspects of social media and traditional websites. It describes itself as “a network of family and friends of people living with diabetes, who share experiences, learn from others and find credible information from some of Canada’s leading diabetes healthcare professionals” (http://www.diabetescarecommunity.ca/Home.aspx, n.d.). There is some interaction happening in the discussion sections, with people sharing information. However, interestingly, the discussion comments on emotional support were about people looking for in-person support groups. It didn’t appear to occur to the members that they could act as an online support group for each other.
  • Another Canadian social networking site is PeoplewithDiabetes.ca, which has its roots in advocacy. While people do post questions and significant information is provided on a range of issues, it doesn’t appear that there is significant peer to peer interaction on the site.
  • Diabetes Innovations is an interesting, engaging and informative Facebook page supported by BD.  BD is a medical technology company that manufactures and sells a broad range of medical supplies, devices, laboratory equipment and diagnostic products. Some of the information on the site has been tagged as self-serving by at least one user, who complained that BD was promoting the use of shorter needles that he hadn’t found to be effective, but were a product of BD. “Oh wait…your (sic) one of those organizations profiteering off diabetics (sic)misfortunes by inventing redundant products.”
  • Diabetic Connect is a comprehensive site owned by Alliance Health. It has the most extensive interactive community that I found, with thousands of responses to diabetes discussions started by members. Discussions can be accessed by topic, most popular, those that are active and the ones most liked. The discussions are monitored by patient/community advocates. There is also a section where questions can be asked of a nurse, dietitian and endocrinologist. The privacy policies are clearly posted, along with guidelines on how to participate. The site offers recipes, news articles, product reviews, videos and more. The Health Centre offers articles on different aspects of diabetes that have been reviewed by clinicians.  Diabetic Connect posts ads and offers, but members on the site have to opt to receive more information or offers. I joined this site after receiving written permission from Diabetic Connect to do so, which allowed me to delve deeper into the site that I would have otherwise been able to. To date, Diabetic Connect appears to be the gold standard in social networking sites.
  • Diabetes Self Management is an award winning site owned by R.A. Rapaport Publishing. People can subscribe to a magazine or read the blog online. Comments to blog posts are welcome and membership in the site is not required. Commentators are asked not to publish personal information. The editorial board includes clinicians and researchers from across the United States. There does not appear to be a significant volume of commenting on the blog posts.
  • WebMD is a popular site that has a diabetes community page with over 5000 members. They describe their community as a safe place where people with similar health issues “can meet each day to talk, share stories, and make new friends” as well as interact with health experts. Personal information is used primarily for administrative purposes, to customize advertising, and for research. Personal information is aggregated.

What follows isn’t even an attempt to scratch the surface of blogs. Perhaps the best way to find blogs that you want to follow or recommend is to go to the websites above and start following links from ones you find to be better resources.

Assessing the Quality of a Social Media Site

While confidentiality and privacy are two primary concerns, quality of information, community norms and issues of ownership of social media sites are other concerns. Check out who owns a site and who sponsors it. Look for transparency about the credentials of those posting articles. Find sites that are moderated and where misleading and abusive posts are removed. Look for symbols on sites that show that they have been certified.

One of the voluntary certification organizations is Honour Code. Its principles include giving the qualifications of authors so you know who wrote the article, respecting the privacy of users, citing the sources and dates of medical information, transparency and financial disclosure, among others. For more information go to http://www.hon.ch/HONcode/Patients/Visitor/visitor.html

TRUSTe offers a privacy “best practices” seal. Diabetic Connect, for example, displays their seal and has a very clear and informative privacy policy. More information on Diabetic Connect’s certification and Truste can be found at http://privacy.truste.com/privacy-seal/Alliance-Health-Networks/validation?rid=fbf340a1-6401-40cd-9968-31e73635a8b8.

In my seventh post in this series, I will be talking about best practices for going online and offering my ten tips for patients and clinicians.

References

Rozen, Askalani and Senn (2012). Staring at the sun. Identifying, understanding and influencing social media users. Aimia. Accessed October 30, 2012 at http://www.pamorama.net/wp-content/uploads/2012/06/Aimia-Social-Media-White-Paper-6-types-of-social-media-users.pdf

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