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To hear and be heard

Author: Diana Price

How do you communicate with your friends and family? Have you added tweets and posts to your daily dialogue? If so, you’re among a booming population of social media users who are integrating this form of communication into all aspects of their lives.

Popular social media platforms like Facebook, Twitter, and YouTube allow users to send personal updates, share photos and videos, and provide morefrequent insight into daily life and major events. Everyone—from young kids to grandparents—seems to be joining this now ubiquitous high-tech conversation.

Patients find support

Research shows that eight in 10 Internet users have logged on to research a topic related to their health.1 Among those active seekers of online information and support are cancer patients and their caregivers, who are using social media in increasing numbers to create community, learn about a diagnosis, and share regular information about their journeys with loved ones, other patients, and their health care providers.

Dawn Jones, 51, who is being treated for stage IV inflammatory breast cancer at Cancer Treatment Centers of America® (CTCA ), has found that becoming engaged with social media through a Facebook page has provided an enormous emotional boost during her treatment. “Social media has created a whole community of inspiration, courage, prayer, empowerment, and information,” she says. “When I’m feeling low or out of sorts, I go on my page and start reading and responding to what I call my FB family. I have gained some great friendships and never feel alone.”

Dawn’s experience speaks to the valuable role that social-networking sites play for patients, transcending age, geographical, and other boundaries to create a compassionate and responsive community that provides both psychological support and health information. Studies related to social media use among cancer patients support stories like Dawn’s, revealing that survivors feel empowered when they are able to help others, and that this sense of empowerment is a key factor in their participation in online support communities, along with the information available.2

A variety of options for connection

Opportunities abound for patients and caregivers interested in creating community online. In addition to Facebook, Twitter, Myspace, and other general social media platforms, there are an increasing number of cancer-specific social networks. Patients, loved ones, and providers benefit from these unique communities, which cater to the needs and the concerns of individuals facing health challenges.

Missey Moe Cook, vice president and executive director of CarePages, a community of millions of users who relate their cancer and other health journeys through easy-to-create personalized websites, says, “Today’s consumers use the Internet as their communication mechanism, and social media is here to stay.” Missey says that CarePages, which is unique in that it is private, hospitalbranded social media, is proud to offer a community of visitors that provides the patient with love and support. “We touch lives,” she says. “Pure and simple: we touch lives.”

Erin Ficociello’s is one of those lives touched by CarePages. When her sixyear- old nephew was diagnosed with non-Hodgkin’s lymphoma, the family used the service to create a blog that would keep family and friends informed and updated. “The website was invaluable,” Erin says. “The support from the online guest book was palpable.” When Erin herself was diagnosed with breast cancer less than six months later, she knew immediately that she wanted to create her own blog. “The blog became a way to express our fears, concerns, insights, and experiences about both my nephew’s cancer and, later, my own. Through the web we were able to meet others with similar diagnoses and reach out to those who were behind us in the treatment journey.” Now that Erin has finished treatment, she has continued to use social media, most recently as a moderator for CancerConnect.com, a social network and online information platform for cancer patients and caregivers. Having come full-circle, Erin is grateful to now be able to provide support for others. “I find that chatting with others is a way for me to focus what I’ve been through in a positive way,” she says.

Marcia Donziger, founder and executive director of MyLifeLine.org Cancer Foundation, believes that a strong support community is critical for cancer patients. MyLifeLine.org provides free personal websites to cancer patients and caregivers to “ensure that no patient ever feels alone.” A cancer survivor herself, Marcia understands the needs firsthand: “The impact of the service is profound,” she says. “Easing the burden of communicating with a patient’s support community can increase quality of life by opening the channel to receive love and encouragement while getting the patient and the caregiver the logistical help necessary to make it from active treatment to survivorship.”

Providers benefit, too

In addition to their ability to enhance communication efforts and provide support, social networks can improve communication between patients and their health care providers. Simeon Jaggernauth, DO , medical oncologist at CTCA in Tulsa, Oklahoma, has seen firsthand the benefit to his patients in their personal communication and in their ability to stay more connected to their medical team. “Social media allows caregivers and patients to connect at a much more personal level,” Dr. Jaggernauth says. “And with the advent of social media, a patient and a physician can connect on a more intimate level, which is why I use this in my practice. My patients feel directly connected to me and have the added benefit of obtaining real-time updates when new trials and technologies become available that may benefit them.”

A valuable tool

For so many cancer patients and families, social media has become an integral part of their journey. The opportunity to create a supportive community and at the same time share the wisdom they have gleaned themselves can be incredibly empowering. If you or a loved one is facing a diagnosis and has not explored the benefits of social media, you may want to consider taking a look at some of these dynamic communities.

REFERENCES

  1. Meier A, Lyons EJ, Frydman G, Forlenza M, Rimer BK. How cancer survivors provide support on cancer-related Internet mailing lists. Journal of Medical Internet Research. 2007;9(2):e12. doi:10.2196/jmir.9.2.e12.
  2. Fox, S. Cancer 2.0: A summary of recent research. Available at http://www.pewinternet.org/ Reports/2010/30--Cancer-20.aspx. Accessed May 18, 2011.
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