Network Power

07Nov14

I’m a sometime TwiFeatured imagetter user, always a little bemused by the platform. For me, Twitter is a swift flowing river where I occasionally dip my hand to catch information or add to the volume. Last week, however, while at the Canadian Patient Safety Institute 10th Anniversary Conference, I tweeted “The answer to increasing complexity is simplicity. Nikhil Joshi. #asklistentalk” and added this photo.

Andre Picard from the Globe and Mail retweeted it and within a few days, my tweet had 2,426 views, 16 favorites, 14 link visits, 27 retweets. Andre Picard – @picardonhealth – is a powerful node with 29,000 followers. I understand network theory, I know how these things work, but it was a little rush when I went just a bit viral.


I had the privilege of speaking with Sue Robins at the Canadian Patient Safety Institute last fall. Hers is an important and thoughtful voice. What she says here about compassion is so important. “The problem of hospital ED overcrowding may not go away anytime soon, but it is very important how patients and families are treated during their time in the ED.”

Log in at http://www.gowebcasting.com/events/cpsi-virtual-forum/2013/11/01/navigating-a-complex-system-tips-from-professional-communicators/play to view our presentation.

 

sue robins

littleprince

Today, I had the great pleasure of speaking to Emergency Department professionals at the WEDOC 2014 conference.  I think the most exceptional health professionals conferences are the ones that include a direct patient voice in their speaker lineup.

My levels of anxiety about public speaking seem to vary depending on the audience.  Today I drove white-knuckled to the hotel, and sat in a cold sweat for the 45 minutes before I stood up to speak.  I was in the rather intimidating position of speaking before Olympic gold medalist Jennifer Heil, but was grateful that I was scheduled early on the agenda.

Emergency department staff and physicians are an important audience to me.  Aaron has taken us to ED on several occasions.  I am grateful for the triage nurse who listens to my gut feeling when I say, ‘he is really really sick,’ and to the doctor who talks to Aaron directly…

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Yoga

30Sep13

https://judithdyck.files.wordpress.com/2013/09/f5ec7-snoopy-dance.jpeg

I just saw that the yoga studio I go to shows the history of all classes attended. In the last year, I’ve attended 104 classes, or as they say, brought myself to the mat 104 times. That’s about 3 times a week, factoring in holidays and other life events that threw me off track. I’ve never been much of a joiner and my past is littered with punch cards for fitness classes that still have an embarrassing number of visits left on them, so I find this remarkable. I think that yoga is holding my attention because I’m learning that the more I practice, the harder it gets as the difficulty of the simplicity reveals itself. And I’m really enjoying regaining the strength I used to take for granted.

YAY!


#APCC12

17Nov12

I’m off to attend the 2012 Accelerating Primary Care Conference where I’ll be writing daily summaries of what’s covered in the conference’s sessions. I’m also going to be presenting my poster on eHealth, Social Media and Chronic Disease Management: The Patient Perspective and looking at ways that clinicians and educators are using social media (or not) in their interactions with their patients with chronic disease.

Dr. Michael Evans is the keynote speaker on Sunday night. He’s online at My Favourite Medicine and is using the abundance of Web 2.0 to provide great advice to clinicians and people on ways to better manage their chronic conditions and improve their overall health. Check out his video the ABC’s of Diabetes. Great advice, but wonder if he will consider adding an information prescription to the social network component of his change prescription?

If you’re interested in the conference, check it out on Twitter #APCC12 or #primarycare. We’ll be posting the daily summaries so you can find out what’s happening. I’ll post links on my blog and tweet them out, too. “See” you there.


Well, maybe not final thoughts. There are a lot of things that I want to follow up as a result of what I’ve learned about social media for people with chronic conditions. A few that might be interesting include:

  • While Weitzman et al.(2010) and Greene et al. (2010) developed research frameworks for analyzing online information and sites, there are other ways to analyze sites, including Martin-Niemi and Greatbanks’ (2010) ten enabling conditions. Establishing a rating system was beyond the scope of this course but is one that I may explore further.
  • Developing an easy to administer questionnaire for patients would help health educators in developing an information prescription. The market segmentation done for commercial interests may or may not hold true for people with a chronic disease.
  • It would be interesting to analyze user perceptions of various sites and compare them to clinical assessments of their utility and usefulness.
  • It would be good to look further at the connection between the increased use of peer-to-peer health connections online and better health outcomes.
  • It would also be useful to look further at best practices in social media use by health advocacy organizations.

When I set out the parameters for this blog series as part of independent coursework at the University of Alberta Masters in Communications and Technology, I wanted to review the use of health condition-related social networking sites and how people interact and use them. One of the challenges I found was defining a social networking site, which is why I devoted some time to developing definitions. There really didn’t seem to be very much in the literature on the different kinds of sites and their pros and cons. Another gap appeared to be in addressing the privacy implications of using Facebook for health-related community building.

I had also hoped to look at the proceedings of COACH’s ehealth conference held earlier in 2012. COACH is Canada’s health informatics association. However, the organization didn’t make full proceedings available.

In a third part of the course, I submitted an abstract for a poster presentation at the Accelerating Primary Care Conference November 19-22, 2012, which was accepted and I hope to blog from the Conference. Click here is you’d like to view the poster Accelerating Primary Care 2012 Poster: Judith Dyck.

And a heartfelt thanks to Dr. Ann Curry and Dr. Fay Fletcher for their patience and acting as supervisors for this project. As people with a chronic disease and students always discover, one doesn’t journey alone.

References

Greene, J., Choudrhy, N., Kilabuk, E., & Shrank, W. (2010). Online social networking by patients with diabetes: A qualitative evaluation of communication with facebook. Journal of General Internal Medicine 26(3), 287-292.

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), 7-23.

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, 292-297.


Like any endeavour in life, it’s best to be armed with some awareness of what to do and what not to do before proceeding. What follows are my tips for patients going online that clinicians might want to pass along. If you do, please acknowledge the source.

 Ten Tips for Patients Going Online

  1. Inform yourself on what’s available.  There are lots of different options.
  2. Try different applications. Download a monitoring app. Log your workouts. Follow a blog.
  3. Find a site that’s checked by health professionals and community participants. Look for a commitment to removing or identifying misleading, inaccurate and abusive posts.
  4. Find a site that allows you to post with a user name. It’s almost always better not to use your own name if you are going to share your experiences about your health.
  5. Find out who is giving advice. Know if it’s a patient, a clinician or someone interested in selling or promoting something. Factor that into what you do with the information. If you can’t find out or have concerns, proceed with caution. Like everything in life, you have to assess the risks and benefits.
  6. Find out who owns the site. It provides a lot of insight into what is featured on the site.
  7. Check with your health team before making changes to your treatment plan. A reputable site will recommend that you do this. Your health team considers all aspects of your health. What works for one person may not work for you.
  8.  Read the privacy policies on sites before you join a site. Are their policies clearly written? Can you figure out if your personal information will be shared with advertisers and how that might happen? Will you be contacted by other organizations? Who can access your information? You need to know and be comfortable.
  9. Use Facebook pages as an information source. ‘Liking’ Facebook pages is a great way to get information delivered to your page on Facebook. However, think twice before sharing health related information. That’s your ‘real’ identity on Facebook; people can track back and link it with other aspects of your life.
  10. And finally, participate. That’s how you will get the most benefit. Interaction can help you feel happier, improve your health outcomes and help answer your questions.

If you’re interested in another take, an article on Weitzman et al.’s (2010) work on analyzing sites offered the following safety tips:

Safety Tips for Patients Using Online Social Networks

  1. Look for sites where the basic description of the disease and how to care for it is consistent with information provided by your doctor. Be very cautious of sites that advertise miracle “cures.”
  2. Find the privacy policy of any website where you register as a member, and make sure that you understand it.
  3. Try to use sites where you have maximal control over the sharing of your health data — where you can designate whether the information you disclose will be available to anyone online, members only or members who are “friends.”
  4. Look for websites that clearly label advertisements and disclose conflicts of interest.
  5. Try to use sites that have moderators and at least periodically undergo external review.
  6. Always remember that going online is not a replacement for visiting your doctor.

Remember, a caution sign is not a stop sign. There’s a lot of good online for people with chronic disease. Health care providers can do a lot to help their patients benefit from social media use.

References

Boston Children’s Hospital. (2011, February 8). Quality varies in social networking websites for diabetics. Accessed at (http://childrenshospital.org/newsroom/Site1339/mainpageS1339P687.html)

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, 292-297.


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


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.


Photograph by Patrick Doyle, Canadian Press

In just the same way that medication and a treatment regimen need to take into account a range of factors, so does the choice of social media sites and approaches. The internet has been rightly criticized as providing a lot of misinformation and even dangerous information. Those are good reasons to be cautious. They also are a compelling call to action to providers to assist their patients in becoming discerning consumers and participants. For clinicians, that means understanding what’s on offer.

Part of the key to finding the right online connections is locating places that meet a person’s social and informational needs while helping them understand how to safeguard their online privacy. One size won’t fit all. People have different levels of trust and comfort in participating online. They learn differently. They socialize differently. The good news is that there are a variety of social media sites aimed at people with chronic conditions.

Understanding the Social Media User

It’s important to not think narrowly about who might benefit from social media interactions; the use of social media is widespread. Brenner (2012) found that two-thirds of people in the United States with internet access also used social media.

 We expect younger people to be online, but one in three patients over 65 with a chronic disease is likely to be familiar with and using social media. That’s a sizable portion of any cohort, but it stretches to a high of 86% for people ages 18-29 with a chronic disease. Brenner (2012) reports that in the U.S., one in four people with chronic illnesses use the Internet to find people with similar conditions, or what is called peer-to-peer health.

 Rozen, Askalani and Senn (2012) at the marketing firm Aimia, have developed a social segmentation model that provides some insights into U.S. social media types. While based on the United States market, it likely has some utility for the Canadian marketplace; Canadians are as or more likely to use the internet, as discussed in part one of this series.

Rozen et al. (2012) describe six categories of users:

  • No shows (41%) – likely men over 65 who haven’t been on a social network in the last thirty days, have low levels of trust and no interest in letting others know what they’re doing.
  • Newcomers (15%) –passive users of a single site, usually Facebook.
  • Onlookers (16%) – sometimes called lurkers, they keep up to date on what others do but don’t like to share personal information.
  • Cliquers (6%) – active single network users who are usually on Facebook, are generally female, and are active within their small network of close friends and family.
  • Mix-n-Minglers (19%) – actively participate on multiple platforms and are likely to follow brands, understand the importance of privacy and are influential users amongst their friends.
  • Sparks (3%) – are the most engaged users. They use social media to express their views and act as ambassadors for their favorite products and sites.

Zinc Research (2010) provided a similar segmentation for the Canadian market. Zinc broke out the market as follows:

  • Heavy users (Online/Real time): 6% of users
  • Casual users (“Samplers & Lurkers”): 29%
  • Business users (“Suits & Strategy”): 5%
  • Socializers (“3Cs – Chat, Chill and Connect”): 14%
  • Friend & family circles (Facebook Friends): 24%”

Rozen et al. (2012) base their segmentation on an analysis that posits that the two main emotional drivers for social media use are control over personal information and trust.

  • The desire for control over one’s personal information tends to correlate with a willingness to participate on social media. The more control people feel they have over what they do on social media, the more likely they are to engage online.
  • Trust is the level to which people feel their personal information is safe and that their networks are supportive. The more trust they have in the sites they use and their networks, the more willing they are to share (p. 6).

This has important implications for the information prescription. Educating users on how to safeguard themselves online and engage appropriately should make it more likely that people who could benefit from the use of social media will do so. As well, by researching sites and then recommending them to patients with chronic disease, the more likely people are to trust the sites and use them to their advantage.

As discussed in part one of this series, Canadians over 55 are the fastest growing segment of online users. And the person with the diagnosis isn’t necessarily the only beneficiary. As discussed in the second post in this series, when one person in a household is diagnosed with a chronic disease, the whole family lives with the diagnosis (Diabetic Connect, n.d.). So even if the person with the diagnosis doesn’t want to access social media, someone else in their family may be interested and can become a source of information for the person with the disease. As well, the family member may find support and understanding regarding his or her own struggle living with someone with a chronic disease. For example, parents of children with diabetes are active on many sites and some are very active bloggers.

Like any other cohort, people with a chronic disease cohort will fall somewhere along a social media continuum that goes from non-user through lurker to participant. More people are using social media all the time and by understanding and recommending good sites and applications – making the information prescription – health care providers can help people feel comfortable with their social media use. AFter all, they are the number one information source for almost all patients with a chronic disease – 93% in the United States (Fox & Purcell, 2010).

In my next post, I explore what’s on offer online.

References

 Brenner, J. (2012, September 17).Pew Internet: Social Networking (full detail). Accessed October 26, 2012 at http://pewinternet.org/Commentary/2012/March/Pew-Internet-Social-Networking-full-detail.aspx

Fox, S., & Purcell, K. (2010). Chronic Disease and the Internet. Accessed at http://www.pewinternet.org/Reports/2010/Chronic-Disease.aspx

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

Zinc Research. (2010). ZINC Research releases Canadian social media segmentation research findings. Accessed October 30, 2012 at http://www.zincresearch.com/modules/news/newsitem.php?ItemId=16


Part Three was to have looked at several social media sites in more detail and discuss their pros and cons, but the question of the use of Facebook took over the post.

Facebook is accessible. Most people are familiar with it. Organizations can quickly and inexpensively build pages  that allow them to connect with their stakeholders online through social media. There’s just one big problem: it’s very easy on Facebook to disclose personal health information in a very public forum.

Many online communities give people the opportunity to create a user name and therefore to mask their identity. This gives people a greater degree of anonymity in their online communities than offline. This advantage doesn’t exist on Facebook. Most people use their real names on Facebook; it’s one of the requirements that Facebook makes of its users (Facebook, n.d.).

While it’s always possible to create an anonymous identity on Facebook, people generally don’t because they want people to be able to find them. It’s also possible to create private groups, but those have the disadvantage of not being readily accessible to anyone who may wish to participate. Private pages accessible only by invitation have limited usefulness to organizations trying to build connections online.

By using one’s real name and discussing health concerns on Facebook, there is a very real risk that personal information is disclosed with little opportunity to maintain confidentiality. By going on the Canadian Diabetes Association Facebook page, for example, and responding to an article, anyone can access an individual’s personal identity and likely learn something about their health status. This isn’t as great a concern on Diabetic Connect or similar sites which allow for the creation of a user name and where participation takes place behind barriers to casual access through logins and needing to be a member.

When you ‘like’ a Facebook page, postings from that page will show up on your ‘wall’. So by liking the Canadian Diabetes Association Facebook page, people receive news that the organization posts to the page. Diabetic Connect uses its Facebook page to provide information much the way that the Canadian Diabetes Association does. When people ask a question, the page administrators respond by informing the person that they’ve asked a great question and inviting them to “the community”, which is what they call their social networking site.

In another use of Facebook, the Canadian Diabetes Association has recently launched a campaign that invites people to share their stories about what a cure means to them. In return, people are entered to win prizes, including a trip to Disneyland (http://whatacuremeans2me.com/). People are sharing stories about their struggle with diabetes or that of their children, often too young to give meaningful consent to having their information shared. This raises ethical concerns about the posting someone else’s health information. The Association’s privacy policy states that “If you provide information about a family medical history, this information will be considered as your information only, and not personal information of other family members” (Diabetes.ca, n.d.). So eyes wide open. Presumably by posting, people have agreed to this use of their information.  People are posting pictures of their family along with significant health history, which the Association is utilizing as part of a fundraising campaign. This may have unintended consequences for them if and when someone unscrupulous uses this information for their own purposes. In a recent Forbes article, Connor cautioned that hackers can pose as us more easily and commit identity fraud and skip tracers can sell our information to investigators, journalists and others. The advice given is not to post too much information and don’t let your kids, either (“Sharing too much?”, 2012).

Weitzman et al. (2011) examined online diabetes-oriented social networking sites. One aspect of the sites examined was their privacy policies. They describe the dominant assumption of sites’ privacy provisions was ‘proceed at your own risk’ and where terms of use were a substitute for informed consent (p. 296). Part of their recommendations was that sites emphasize the protection of personal health information. Facebook would not seem to facilitate protection, but by now, organizations and individuals need to have thought this through when using Facebook. Greene et al. (2010) examined fifteen Facebook groups focused on diabetes management. There was evidence of emotional support and information seeking and sharing, but they cautioned that information being posted was not verified for accuracy and that people posting could not be identified. It may be that they weren’t aware that most people on Facebook use their own names. They also didn’t identify concerns that people might be sharing too much personal health information in an online environment, which warrants further investigation.

So Facebook or not? The answer for people and organizations is to be aware of the strengths and limitations of Facebook. A good rule of thumb is not to post personal health information or clues to your personal health status on Facebook. Even if the information seems benign, posting to Facebook pages leaves a trail that anyone can follow. With a few clicks it’s often simple to find out where someone went to school, where they live and who they’re connected with. That’s unsettling at any time, but what if the person looking is a co-worker and you haven’t disclosed your health condition at work?  What if it is a recruiter deciding whether to contact you and just wanting to know more about you? While your medical condition or that of your family shouldn’t screen you out of the opportunity to apply for a job, for example, it still could in ways that the individual doing the screening may not even be consciously aware.

Organizations need to ask themselves if they are inviting members of their community to share more information than they should and if the convenience and accessibility of Facebook warrant the risk to their reputation and the online safety of their “friends” who “like” them.

Update October 31, 2012: I received some feedback that this post made participating online less attractive because of the privacy concerns. There are many ways to participate that don’t have the same privacy risks, including blogs and social networking sites that allow for the use of user names. Facebook is a good choice for accessing information. It has serious drawbacks as a discussion forum for chronic conditions.

References

Canadian Diabetes Association. (n.d.) Retrieved from  http://diabetes.ca/about-us/policies/privacy/

Connor, C. (2012, October 19). Sharing too much? It’ll cost you. Retrieved from  http://www.forbes.com/sites/cherylsnappconner/2012/10/19/sharing-too-much-itll-cost-you/

Diabetic Connect. Retrieved from http://www.diabeticconnect.com

Greene, J., Choudrhy, N., Kilabuk, E., & Shrank, W. (2010). Online social networking by patients with diabetes: A qualitative evaluation of communication with facebook. Journal of General Internal Medicine 26(3), 287-292.

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.

What names are allowed on Facebook? (n.d.) Retrieved from https://www.facebook.com/help/?faq=112146705538576




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