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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Part One of this series about social media and chronic disease looked at what social media is and what it offers people and their care team. In this second post, we’ll look at the theory behind why it works.

A lot goes on for a diabetic. Maybe not as much all the time as the image suggests, but the word bubble in this image is telling. A diabetic can’t forget they’re a diabetic without consequences that can be life threatening. They need to keep track and respond to a myriad of facts, actions and adjustments daily: monitor their status, adjust their food and insulin intakes to respond to environmental and physical factors, stay active and so on.

Social media is changing how we interact with our friends and family, how we seek and share information, and how we meet our informational and emotional needs. It can also be a powerful tool for someone dealing with diabetes or other chronic diseases.

Social media can provide someone with:

  • Emotional support,
  • Safe places to vent,
  • Information and resources that are there when needed even it’s not during office hours, and
  • A community of people who have the same concerns and issues they have that others without a chronic disease don’t share and may not understand.

This makes social media an important addition to the resources that people can access in person from their health care team, family and friends.

Close Ties, Weak Ties and Reciprocity

Social media allows people to build new social networks. Kadushin (2012) points out that social networks have value because we can access resources through them, we can trust what we find there, we can reciprocate with information and support and we are able to experience a sense of shared community (p. 164). An online community can supplement and add to our other networks and even offer support that cannot be provided by our face to face community’s networks.

The ability to access to resources outside of one’s usual network of support can be particularly important for the long term well-being of people with a chronic disease.  Chronic diseases are a burden for everyone close to the person with the condition. Diabetic Connect is a social media site owned by Alliance Health that works to empower people living with diabetes. In an article on communications found on the site, a regular contributor wrote this:  “Remember that nobody’s going it alone. When one person in the house is diagnosed with a chronic condition, everyone in the house lives with that diagnosis” (Diabetic Connect, n.d.).

People report not wanting to burden their close tie relationships with all their fears, concerns and daily health status: anyone can get burned out from the obligations inherent in close relationships and feel resentful. As well, our close tie relationships are complex with a range of different relational needs. Asking them to always be the primary source of chronic disease support adds to the burden. Weak tie relationships made online are there in abundance; these weak ties haven’t grown weary of our demands and concerns and can offer a new perspective. It’s also an opportunity to be helpful to others, which may mitigate feelings of helplessness and inadequacy (Wright, 2009, p. 250).

Reciprocity is another important aspect of close relationships. If I’m the one with the chronic disease and I’m the one who always needs a shoulder to cry on, I’m going to start feeling like I’m doing all the taking and unable to support them (Wright, 2009, p. 247.)  Social media connects people with many others who understand what someone is experiencing and can provide the social support that is critical to health without the other complications inherent in close tie relationships. It also gives the person with the condition more options as to what they share and where they share it. As a caregiver advocate says on the Diabetic Connect site, “Diabetes is a daily part of our lives, but it’s not the only part of our lives” (“Diabetic Connect”, n.d.).

The Importance of Social Support and Sharing Knowledge

Social support plays an important role in health outcomes. One of the ways it is thought to do this is by protecting people from the effects of stress a person encounters. This buffering model posits that social capital and other networking benefits bring down someone’s stress level. Another way that social support is thought to improve health outcomes is by experiencing positive interactions which lift people’s mood and help them cope (Wright, 2009, pp. 246-247). This support appears to be a key element of many interactions on the social media site, Diabetic Connect.  Greene, Choudrhy, Kilabuk and Shrank (2010) noted that discussions online between people were open and encouraging, recognized each others limitations and encouraged people to set self-defined incremental goals (p. 289).

More traditional websites can be great sources of information, but on a social media site the user can ask a question and get a targeted answer as people weigh in and share their experiences – sharing their knowledge as well as providing information. Cook and Brown (1991) call this type of knowledge knowing; knowing is what we have learned from our engagement with the world (p. 61). ““Knowing is to interact with and honor the world using knowledge as a tool” (p. 64).

A key part of knowledge sharing and creation is a willingness to be open to interaction: by participating in an online community, the users are signaling their desire to interact. While this kind of sharing can be found in face to face support groups, those groups are limited by the number of people who can physically attend and the need to all be in the same space at the same time. Social media is freed from the restrictions of time and space (Wright, 2009, p. 248).  People also have more distance from each other than they would in a face to face situation, which can lessen people’s concerns about interactions with people they have only just made contact with.

Self and Social Media

Over time, people build an online identity that tends to be idealized; we put our best foot forward. Social information processing theory posits that we do this to attract others. Those in turn receiving the message get an idealized sense of the people they are interacting with and respond with their better selves. The asynchronous nature of the communication online allows people to edit what they say. The back and forth communication then provides a feedback loop that intensifies the positive reinforcement going on between people. This can make online group participation more effective than face to face group work (Wright, 2009, p. 253).

As well, the act of writing down one’s thoughts also seems to have a therapeutic effect by allowing the individual to distance themselves from their emotions (Wright, 2009, p. 250). Wright (2009) points to a study by Floyd et al. (2007) that found that supportive messaging is related to lower cholesterol and cortisol levels, both of which are linked with heart disease and stroke (p. 250).  More recently, in an article that was covered in popular press (“Facebook sharing,” 2012), Tamir and Mitchell (2012) reported that self disclosure engages the parts of our brain that are associated with reward and that’s why we like to participate in social media.

If online interaction can be hyper-positive, it can also be hyper-negative as recent bullying cases in the media have amply demonstrated (“Cyberbullying,” 2012). This argues for organizations to monitor their sites. On Diabetic Connect, information that doesn’t meet the code of conduct is removed. This breaks negative feedback loops before they can intensify. The site also employs patient advocates and others who monitor and step into conversations to help ensure that people are being supported. Other organizations scrutinize their Facebook pages and have the ability to remove posts which are inappropriate for the goals of the site.

Social comparison theory says that finding others in similar circumstances can make us feel that we aren’t alone; our situation is normal given what we are dealing with (Helgeson & Gottlieb, 2000; in Wright, 2009, p. 256). This reduces stress for people facing health issues. People may be inspired by what others are doing; they may feel frustrated that they aren’t doing as well as others. This argues for social media interactions not being the only support given to a person with a chronic disease.

The evidence is there to indicate that social media use by people with a chronic disease is more than a fad; it can positively support health outcomes and well being. In part three, I’ll look at the pros and cons of using sites hosted on Facebook.

References

Cook, S., & Brown, J. (1999). Bridging epistemologies: The generative dance between organizational knowledge and organizational knowing. Organization Science, 10(4), 381-400.

Cyberbullying-linked suicides rising, study says. (2012, October 20). CBC News. Retrieved October 21, 2012 from http://www.cbc.ca/news/canada/story/2012/10/19/cyberbullying-suicide-study.html

Diabetic Connect. Retrieved from http://www.diabeticconnect.com/diabetes-articles/263-chronic-communication-finding-middle-ground?category=beyond+diet+and+exercise

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.

Kadushin, C. (2012). Understanding social networks: Theories, concepts and findings. New York, NY: Oxford University Press.

Study: Facebook sharing comparable to enjoyment from sex, food. (2012, June 23). Retrieved October 21, 2012 from http://washington.cbslocal.com/2012/06/23/study-facebook-sharing-comparable-to-enjoyment-from-sex-food/

Tamir, D., & Mitchell, J. (2012). Disclosing information about the self is intrinsically rewarding. Proceedings of the National Academy of Sciences of the United States of America, 109(21), 8038-8043.

Wright, K. (2009). Increasing computer-mediated social support.  In J. Parker & E. Thorson (Eds.), Health communication in the new media landscape (pp. 243-265). New York, NY: Springer Publishing Company.


Patients diagnosed with a chronic disease may soon find themselves leaving the office of their primary health care provider with a prescription that they won’t fill at the pharmacy. Armed with new information on the benefits of social media in supporting people with a chronic disease, patients will be encouraged to join an online conversation as part of their health prescription.

Over the last few months, I’ve been looking at the potential of social media on improving health outcomes for people with chronic conditions, specifically diabetes. This is the first in a series of blog posts which I will be doing over the next few weeks to talk about what I’ve learned. In these posts, I will be exploring why social media meets needs, how it can support long term behavioral change and why organizations may need to invest more in their social media presence if they want to support people with chronic diseases. In this posting I will define and discuss what social media is, talk about chronic disease and why I’m focusing my attention on diabetes, how people with chronic diseases use the internet, and the growth and power of social media.

Defining Social Media

In 2012, with a billion users worldwide on Facebook and comScore (2012) saying that Canadian Facebook use was nearing saturation at the end of 2011, the definition of social media sites may seem strikingly obvious (n.d). However, it’s important to distinguish networking sites versus those that are more about providing information. Social media is about interaction between users. The platforms vary, as do features, but what distinguishes social media from other sites on the internet is participation:  members participate in and create communities, rather than extract information in a one-way transaction where information gets pushed out. Members can contribute their own information, pose questions and support one another. On social media sites, people choose to belong to the community. They build a profile that is public to some degree. They connect with others and look at what their connections and others post on the site (boyd and Ellison, 2007, p. 211). On traditional websites, information is offered in a one-way transaction, from the expert to the information seeker.

In looking for social media sites which target people with chronic diseases, very little was found in the way of true networking opportunities on Canadian sites.  Canadian disease advocacy organizations appear to have little in the way of social media features on their internet presence, other than links to Facebook pages. Yet Facebook can be problematic when dealing with chronic health conditions from a privacy perspective, which I will deal with in a subsequent blog post.

Understanding Chronic Disease 

Chronic disease is a huge burden on people, their families and friends and society. Yet more and more people are living with a chronic disease because of advances in treatment.Chronic diseases are conditions which require management over a long period of time, generally for conditions for which there is no cure at present, such as diabetes, heart disease, arthritis and asthma. These conditions affect one in three Canadian adults (CIHI, 2008).

Living well with a chronic disease often means changes in lifestyle, diet, exercise and emotional self care. This is self-managed care that for the most part occurs as part of a person’s daily life away from the support of a health care team.  At the end of the day, or appointment, people leave a doctor’s office or dietitian’s to face the ongoing daily task of managing their care.

Therefore, a big part of improving health outcomes for people with chronic diseases means improving their ability to participate and even direct their care. Ahern, Kreslake, & Phalen (2006) point out that even in a high quality and well resourced clinical practice, it is unlikely that there are sufficient resources to monitor and counsel at-risk patients (p. 1). Time is the least available commodity in primary care practices and, in any event, what people do on their own to manage their chronic health issues is often more important than their medical care. Therefore, helping people become good caregivers for themselves is a critical part of better health outcomes (Bodenheimer, MacGregor, & Sharifi, 2005, p. 5).

A Focus on Diabetes

Diabetes is perhaps one of the most complex chronic diseases for people to manage. Diabetes patients often have to take medication and maintain a healthy lifestyle. They also have to monitor their blood glucose levels, blood pressure, cholesterol levels, weight, food intake and physical activity in an ongoing balancing act in order to optimize their health (Gluekauf and Lustria, 2009, p. 159). People need support, information, encouragement and feedback. This has been a challenge for primary care providers who have increasingly turned to team based care in order to better support patients with chronic diseases and extend their ability to support patient care (Bodenheimer et al, 2005, p. 5). No one health discipline has the necessary knowledge base or the time. A physician does not have the specialized information on diet that a dietitian has, for example. The skills and insights of a team of health professionals is required to truly support a person with a chronic disease.

Effective diabetes self-management includes developing behavior-based skills and habits (glucose monitoring, exercise, blood pressure monitoring, etc.) and sticking with treatment regimes (remembering to take medication, regular testing, etc.) (Gluekauf and Lustria, 2009, p. 152). Often people are counseled to lose weight along with other behavioral changes like quitting smoking and moderating alcohol use. “In order to successfully manage their disease, diabetes patients must not only take medications and maintain a healthy lifestyle but also monitor a number of variables (i.e., blood glucose values, blood pressure, cholesterol levels, weight, food intake and physical activity) in order to reduce risk factors” (Gluekauf and Lustria, 2009, p. 159).

The Power of Social Media

Earlier this year I wrote about the ways that people with chronic conditions use social media and information on the internet to help them improve their health outcomes. In that blog post, I noted that Hordern et al. (2011) identified five areas in which the internet is playing a part in consumer health and changing people’s expectations of the system and their own response to health concerns:

  • Online support groups;
  • Self management and monitoring applications;
  • Tools to assist in decision making;
  •  Personal health records; and
  •  Internet use (p. 7).

If you’re interested in a fuller analysis of these five areas, please visit When Publishing Changes, So Does Society: Medical Practice and Patient Empowerment from the Printing Press to Web 2.0.

It’s the area of social media, or what Horndern et al. (2011) described as online support groups, that is showing increasing promise as an area of internet use when it comes to chronic care. People are online in the millions to look for health information and sharing their experiences and information (Fernandez-Luque, Karlsen & Bonander, 2011).  Fox & Purcell (2010) reported that people with a chronic disease were significantly more likely to use social media, either blogging or participating in an online discussion, and described being online as the “trump card” because they share what they know and receive information from others, using the internet as a communications tool, not just as an ‘information vending machine’. However, they also reported that overall internet use was lower than adults without chronic disease. These findings may not be generalizable even two years later, as rates of internet access and the proliferation of smart devices are increasingly annually, and it can be expected that people with chronic diseases are also online more.

Internet use in Canada is also stronger than in the United States. comScore (2012) reports that Canadians spend more time on the internet than anyone else in the world and that 45 percent of cellular devices in Canada are smartphones, further increasing the potential for internet connectivity. The number of Canadians over 55 online grew 6% from 2010 to 2011 to over 5 million people, the fastest growing segment of users and a cohort that includes people increasingly dealing with chronic disease as they age. The income barrier to internet participation also appears to be dropping with 19% of users reporting a household income of less than $40,000 and slightly more than half of users had a household income of less than $75,000. Time spent on social networking sites was up 2.7% year over year and accounted for approximately 17% of use, followed by entertainment sites and portals in the top three categories of use. This is further enhanced by smartphone use; 40% of the sites accessed were social media or blogs.

comScore (2012) says the world is getting more social by the second:

“Social Media began as a platform to communicate and interact with others locally and globally…The power of social led by companies like Facebook, LinkedIn and Twitter are changing the way that Canadians communicate and share information online and offline. Additionally, it is opening a world of opportunity in the way that brands communicate with the market, providing a first-of-its-kind platform for a more engaging and candid conversation with consumers. Overall, Social Networking is a prime example of how interactive tools can change society. The power of social, and more so the power of like, are driving consumer behavior and retail experiences” (p. 48).

It’s that kind of power that ehealth, chronic disease educators and primary care teams can start to turn to the advantage of their patients and use it to reinforce their relationship with the patient at the same time as enhancing the effectiveness of patient education and self management.

More to come…

References

Ahern, D., Kreslake, J., & Phalen, J. (2006). What is eHealth (6): perspectives on the evolution of ehealth research. Journal of Medical Internet Research 8(1). Retrieved September 18, 2012, from http://www.ncbi.nlm.nih.gov/pubmed/16585029

Bodenheimer, T., MacGregor, K., &Sharifi, C. (2005). Helping patients manage their chronic conditions. Accessed September 26, 2012, at http://www.chcf.org/~/media/MEDIA%20LIBRARY%20Files/PDF/H/PDF%20HelpingPatientsManageTheirChronicConditions.pdf

boyd, d. m., & Ellison, N. B. (2007). Social network sites: Definition, history, and scholarship. Journal of Computer-Mediated Communication, 13(1), article 11. http://jcmc.indiana.edu/vol13/issue1/boyd.ellison.html

CIHI Directions. (2008). Retrieved May 13, 2012 from http://www.cihi.ca/CIHI-ext-portal/pdf/internet/NLETTER_01NOV08_PDF_EN

comScore. (2012). 2012 Canada Digital Future in Focus. Accessed October 9, 2012 at http://www.comscore.com/Press_Events/Presentations_Whitepapers/2012/2012_Canada_Digital_Future_in_Focus

Fernandez-Luque, L. , Karlsen, R., & Bonander, J. (2011). Review of extracting information from the social web for health personalization. J Med Internet Res. 2011 Jan-Mar; 13(1): e15. Published online 2011 January 28. doi: 10.2196/jmir.1432 PMCID: PMC3221336

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

Gluekauf. R. & Lustria, M. (2009). E-health self-care interventions for persons with chronic illness: Review and future directions. In J. Parker & E. Thorson (Eds.), Health communication in the new media landscape (pp. 159-242). New York, NY: Springer Publishing Company.

Hordern, A., Georgious, A., Whetton, S., Prgomet, M. (2011). Consumer e-health: An overview of research evidence and implications for future policy. Health Information Management Journal Vol 40 No 2 2011, pp. 6-14. Accessed March22, 2011 from http://www.ncbi.nlm.nih.gov/pubmed/21712556


Writing a day one blog post implies the tyranny of day two, but I’ll only commit to a wrap up in case I don’t get back to this 🙂 First, an impression of the Media Ecology Association community. Great diversity of ages and faces and lots of academic rigor in the audience. For every Sherry Turkle, Douglas Rushkoff, Lewis Freeman and Lance Strate, there are many other people also willing to share their insights.  It’s very cool to affirm that we’re all puzzling over the same phenomena of social media and networking and what this all means for our society.

Day One Food for Thought

  • Angela Cirucci – How does having our created online self reflected back to us affect us?
  • Abby Seldon – Narcissus didn’t fall in love with himself. He fell in love with his reflection. Are we falling in love with the reflection of ourselves as projected by social media?
  • Alice Cahn and what Cartoon Network is doing to empower kids to make changes in their lives – wow. 
  • Alice Wilder talking about the need for new guiding principles for our use of new technology and her work in developing Blue’s Clues, a fixture in my life as a parent and now I know who to blame for that jingle forever holding a place of honor in my brain.
  • Douglas Rushkoff – “We learn the grammar of the interfaces as we interact.”
  • Sherry Turkle – Our technological devices are so powerful that they don’t change what we do; they change who we are.

Catch you later. For more information on the program, go to http://www.media-ecology.org/activities/index.html


E-books are turning the publishing and reading worlds upside down. Not only are people reading more e-books and online material, more people are publishing in new ways. Books themselves are changing from static content to resources that create a rich library of resources and social media connectivity.

On Thursday, June 7, 2012, Teresa Sturgess and I are presenting a paper on e-books at the Media Ecology Association’s annual meeting in New York.

We’ve posted a copy of our paper here,  The emerging importance of the e-book and its impact on publishing Dyck Sturgess 2011

We’ll also be tweeting from the conference. Follow us at @judithdyck58 and @teresa_sturgess

Thanks to all our fellow students at the University of Alberta Master’s Program in Communications and Technology (MACT). Great program, great faculty and the best cohort. And a special thanks to Mark Wolfe, for inspiring us with his presentation of the MACT course in using and managing communications technologies.

 


Imbrication refers to the overlapping of elements such as shingles on a roof. It’s used in communication theory to talk about how messages and information exchanged over time in the same or similar ways start to overlap and create a strong sense of shared meaning.

It’s a great word to describe what is happening as we continue the use of tools such as Facebook, email, and Twitter. Over time, their repetitive use is causing our physical and digital networks to intertwine and become difficult to separate. Even our strong tie relationships are so interconnected online and off that our digital interactions can be as  meaningful as physical encounters.

This was brought home to me last October when I went to visit my sister, who lives five provinces east. She pointed out that we hadn’t been in the same physical space for over a year. I couldn’t believe it at first, but never doubt your sister – she was right again.

When I analyzed why I hadn’t felt the lack of physical contact, I realized that our electronically mediated interactions were so rich it didn’t really matter. We call each other several times a week, post on Facebook, text and exchange pictures on our smartphones and, what I think makes the biggest difference, match wits on Scrabble. So we not only chat, we play. Continue reading ‘Imbrication – Not Just a Fancy Word’


Last weekend as we all went back into our corners for Reading Week, such as it was, a curious thing happened. Our network as a MACT cohort underwent exponent amplification as we shared poster concepts, crowdsourced contacts and worked together at a scale that I hadn’t seen before. Flash back to a year ago when we first came together. Yes, we connected and we definitely worked together, but over the year, our network has strengthened through our working together on the core courses and learning more about each other. It has also been strengthened by our growing digital literacy and familiarity with Twitter as a social media platform, but also blogging and the course wiki.

Digital literacies are new media literacies as well. Lane Wilkinson is a prolific blogger and librarian who has prepared this chart which outlines what he describes as communicative and evaluative literacies. The left hand side – the communicative literacies – include the skills that will enable us to communicate. It used to be if you could read and write, you were considered literate. In our new digital world, we also need to be able to navigate social media platforms and the web. And if we want to be multilingual, as it were, we need to master some rudimentary visual design skills, learn to make a sound recording which can be uploaded, embed a music file or video, and even create a video. Those are skills that will give us the ‘languages’ we need to express ourselves.

I was stretched this weekend doing my poster, but there were some power people in this regard within our cohort who were very generous. Thank you to you all, and for me, thank you especially for Sylvia, who pulled me out the dragon pit yesterday. I am more design ‘literate’ as result of this weekend boot camp and that’s all to the good.

The world is going to continue to change. Take a look at this Ted Talk by Jane McGonigal: Gaming can make a better world. She’s awesomely inspiring and watching this makes me feel much better about the hours my son spends gaming. We are using our newfound digital abundance wisely and frivolously, but it doesn’t matter much: It’s all creating a richness of interaction that benefits us all.

http://www.ted.com/talks/jane_mcgonigal_gaming_can_make_a_better_world.html


On May 8, I posted on the struggle to get Facebook to stop banning breastfeeding photos and the role Jodine Chase plays as an important node in that network.

When I went onto my Facebook page this morning, I saw a new post by Jodine. It began like this:

“Good morning. I’m going dark for 30 days after Facebook banned me for 30 days because I liked and then shared a breastfeeding picture…”

She went on to provide a link to  Ads DifferenceAdRecallwith Friends, a blog post from Nielsen, which talks about research the organization did on the value of social ads. Social ads are ads sent to people who have “friends” who have liked a product. The ads let you know that your friend liked the product. Nielsen’s research shows that these social ads are 55% more likely to be remembered than non-social ads. That’s an incredible increase in effectiveness and points out how valuable our information is to Facebook and their advertisers.

So by going dark for 30 days, Jodine is withholding the only thing we have that is of value to Facebook or other social media services – our selves and our connections. This is our social capital. It seems Facebook isn’t listening to the entreaties it has received to put a human interface in place to ensure that photos that meet its own guidelines aren’t inappropriately blocked by its algorithm.

Facebook doesn’t appear to realize that by continuing to participate on Facebook, we have faith that it has a social conscience and is able to learn and do the right thing regarding breastfeeding and other human rights issues. They need to figure out that we can lose that faith and withdraw our support. Individually we may only be a grain of sand in their shoe, but if enough accumulate, who knows what might happen.

“Going dark” may be the new protest march. While Wikipedia and other sites went dark to protest SOPA, it doesn’t seem to have been done much by individuals. That said, we shouldn’t be afraid to try.

Jodine is going to be blogging daily on her protest at Jodine’s World. Check it out, including her analysis of the Time photo and why the Forbes article on it entitled “Here’s why Facebook is OK with Time’s Breastfeeding Cover” should have carried the headline “Here is why Facebook is OK with Time’s Breastfeeding Cover….But Will Delete it Anyway”.

Power to the people.


Thank you, Raul Pacheco, for tweeting the link to What Does the Professional Look Like Today by Allison Fine. It was one of those great articles that underscored how profoundly the professional landscape is changing. The attributes of the new professional Fine draws are also those of a transformational leader, who uses inspiration and vision and bring  ‘self’ into the workplace.

Kadushin says that leaders often have a slightly higher status than their followers, but not greatly so, because people want their leaders to be only a little better than themselves (Understanding Social Networks, p. 145). In our networks, I wonder if we don’t want our leaders and new professionals to be the best of ourselves, including being generous with their knowledge, open to the input of others and acknowledging their need to be connected in order to be effective.

 


Yesterday in our Social Networks class, Kate Milberry raised the issue of ‘personalization’ by sites like Facebook and shared an article from Tech Crunch that revealed the way that Facebook had censored a comment by prominent blogger Robert Scoble.

I tweeted it to my friend Jodine Chase, who is passionate about promoting breastfeeding and has been at the vanguard of the battle to stop Facebook from censoring photos of moms breastfeeding their babies.

Here’s what she had to say this morning on Facebook:

“For every Robert Scoble, Roger Ebert, (or Emma Kwasnica [the Vancouver woman who first raised the issue of breastfeeding censorship]) with a high profile, lots of supporters and the ability to get mainstream or social media coverage, there are thousands of others who are harmed by Facebook’s actions and have no recourse. If the rest of us want to live in Facebook’s world without sanction we find increasingly we need to modify *our* behaviour. And that means less sharing, less commenting, less liking… less of the things Facebook WANTS and NEEDS us to do to sell advertising.”

She went on to blog about the issue today, pointing out that Facebook risks the support it counts on through its flawed algorithms – mathematical models that aren’t as discerning as they need to be to read the nuances of our lives . Users will – and are – self censoring and sharing less on the Facebook platform for fear of being blocked because of “Facebook’s sloppy follow-through and arbitrary sanctions”. She and others are asking Facebook to put a human interface between its algorithms and its users. You can read more at http://www.jodinesworld.blogspot.ca/2012/01/fb-harasses-women-for-breastfeeding.html

Jodine’s concerns relate to the issues of privacy on the web and the need for us to be vigilant about what I think of as privacy creep and what we allow our social media tools to do in our lives. While I tend toward the belief that nothing is truly private anymore other than what we do not share, we do need to question how many sites we allow access to our online information and how they can use our information.

It also raises the need to be unafraid to take on an activist role and more than ever, question authority when it is, as Jodine says, arbitrary and unfair. Perhaps it’s a good thing that the barriers to group formation have been radically lowered by the web, as Shirky points out in “Here Comes Everybody”. Because with the concomitant power of social media sites to regulate discourse, we will need to be ready to organize and protest, even in person, as women around the world did on February 6 this year www.salon.com/2012/02/08/facebooks_hypocritical_breastfeeding_controversy

Jodine and I are two nodes in our social networks. We are connected through children, through issues, through cooking, through love of family and at the bottom of it all, a passion for communications, which is what first brought us together. We have a lot of connections in common and so can be characterized as sharing the same social circle, but we also are bridges for each other, providing access to networks we otherwise wouldn’t be able to access.

For another inspiring story about how women are using web tools to change their world, check out hm4hb.org to see how women are using social media to share breast milk.

P.S. If you haven’t done so yet, you should check your account settings on Facebook (downward arrow beside ‘Home’ on the upper right hand corner). In particular, take a look at the Apps connected to your Facebook account.  Facebook Privacy Controls https://www.facebook.com/help/privacy/basic-controls). You might be as amazed as I was at what organizations and sites had permission to access me on Facebook. It’s relatively easy to delete those with which you don’t really want an ongoing relationship.



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