Part One of The Information Prescription – Scope

09Oct12

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

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5 Responses to “Part One of The Information Prescription – Scope”

  1. Was taken back by your opening line: “Patients diagnosed with a chronic disease may soon find themselves leaving the office of their primary health care provider”.

    Last week I read and listened to Dr. Eric Topol who ECG’d himself on stage with an iPhone. Tomorow morning I am hosting Dr. Ed Brown to talk about mobile health as an other layer in telehealth.* Hopefully patients with chronic disease will substantially monitor themselves in collaboration with their clinician — each in their own “place.”

    The rest of your essay is a great read. Exciting isn’t it!

    * will be online @longwoods.com in a week.

    • Absolutely. And practitioners have an important role to play in encouraging their patients to get online and reap the positive benefits. It’s not just about gadgets and monitoring. It’s also about social support and encouragement.

  2. Excellent blog you have got here.. It�s difficult to find quality writing like yours these days. I seriously appreciate individuals like you! Take care!!

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