Social Support Networks Give Rise to E-Patients

[Susan Beausang]

(The following is a 4women guest blog from Liz Belilovskaya, of I Had Cancer.)

When you or someone you love is diagnosed with cancer, your natural reaction may be to want to find out as much as possible about the disease, from available treatment options, to likely side effects, to the day-to-day challenges of dealing with cancer.  Your search for answers will very likely lead you to the internet, where you will find a dizzying amount of information that instead of empowering you, could leave you feeling overwhelmed and helpless.  So what can you do about this?

You can become an “e-patient.”  The “e” stands for “empowered, engaged, equipped and enabled.”  Those wishing to take back control of their lives are proactive when it comes to cancer treatment.  They make it their priority to be as informed and involved as possible.  Of course, this is easier said than done.  How and where do you get information about cancer without getting overwhelmed by the Internet?

Patient social networks are providing solutions by building communities of people who have either had personal experience dealing with cancer or supporting someone through this disease.  They create an invaluable new source of life-changing information from existing resources and relevant personal experience - information that has the power to save lives.

Mailet Lopez, Survivor and Founder of I Had Cancer has an all too common story.  Diagnosed with breast cancer at age 33, she was preparing for her post-surgery treatment when she serendipitously encountered a stranger who told her of a new treatment option that her own doctors were unaware of.  After researching the information, Mailet decided to try the new treatment and in the end, it saved her life.

This is not uncommon.  Most patients are never informed of all their treatment options because no hospital offers all options.  From the patient perspective, the potential of social networking is unearthed when access to hard-to-come-by information is made available.  The more members sharing their knowledge and experiences, the more power every patient has to participate in and even lead their own cancer care.

Discussion threads on social networks illustrate how connecting people around shared experiences can be incredibly beneficial.  From survivorship identity issues to family relationships in the context of an illness, members can exchange experiences and regain control over their lives by engaging the support community.

One user put it this way:

“I live in a small town with no support group and my family is 800 miles away.   This [social support network] has provided me with a wonderful support group of men like me who have or had cancer and can tell me what to expect.  The unknown is the hardest part of facing any problem and this has helped me so much.”

Every patient can better engage in their own care by becoming an e-patient and tapping the knowledge and experience of others on social networks.

Liz Belilovskaya, I Had Cancer

I Had Cancer (www.ihadcancer.com) is a cancer support community that empowers its members through shared experiences by the most relevant sources, the patients.