This is a guest blog post by Cleo Kordomenos. Cleo was my student in the New Media and Health Communication class I taught at TCNJ. More about the class is shared in this post.
Cleo Kordomenos is a Senior Communication Studies student at The College of New Jersey with a concentration in Health Communication and a minor in Public Health. After completing her undergraduate degree, she plans to pursue a Master’s in Public Health, specializing in Health Policy and Management. Currently, she is working at the Children’s Hospital of Philadelphia doing research for CHOP’s Center for Injury Research and Prevention. Outside the classroom and the office, you can find her enjoying time with her family and friends by the beach, hiking, biking, and cooking.
I entered my New Media and Health Communication course at The College of New Jersey opposed to the idea of online health communities as means of providing patient-centered care to individuals. You would think that as a 21-year-old, growing up immersed in technology, I would welcome the idea of utilizing the internet to create online communities.
Growing up as a daughter of two first-generation Greek-Americans, I learned early-on that the personal, physical human interaction has much more value than anything virtual or online. After all, what better cure was there for the cold than curling up on the couch with Yiayia’s hand-knit quilt and homemade bowl of warm, avgolemono soup? 
For the common cold, sure online health communities can’t offer the same comfort and support as the physical touch that a loved one or someone close to you can offer. But I was thinking of online health communities from an outsider’s perspective; these online communities are not for acute ailments such as the flu and common cold, but rather are most beneficial to those who suffer from chronic illnesses and cannot get all the support they need from physical support alone.
My opposition to online health communities stemmed from a lack of knowledge. After spending a semester exploring various online health communities, such as Patients Like Me, and hearing personal accounts from patients who greatly benefited from participating in online health communities. I actually had a chance to impart my new found appreciation for online health communities this past weekend at a family gathering.
I was having casual conversation at a family gathering and one of my aunts mentioned her use of online forums and health communities in dealing with her chronic illness. As a participant in these communities and forums, she mentioned her concern with believing everything she sees posted by users in these forums and communities. Often the information she receives incites fear in her and she goes to her physician with these concerns that are not relevant in her case. Because of this, her physician advised her not to seek help from online forums and health communities.
While online health forums should certainly be approached with caution, I think it is necessary for doctors to embrace this rapidly growing health trend and encourage patients with chronic conditions to seek support from such online forums and communities. If patients first hear of these communities and forums from their primary care physicians, they will go to those forums and communities recommended and approved by the doctor rather than going in blind and following faulty or unreliable advice.
Much like my own initial opposition to online health communities, I think most people’s aversion to online health communities can be changed simply by being more informed. I’ve seen first-hand the great benefit that these communities offer to individuals suffering from chronic illnesses and these benefits shouldn’t be neglected simply because outsiders looking in do not approve.
As a writer on several online cancer forums, especially as to kidney cancer, I am acutely aware of the vast differences in forum by forum. Some offer the soup and blanket approach, along with the ever-welcome chance to vent, while others provide realistic approaches to handle side effects and to seek second opinions. The very best do all the above, plus offer sophisticated education as to the disease itself, the clinical trials available, the pathology, surgery and radiation options that might be considered, a review of the ongoing research and more. All empower patients to some degree, but the best save lives.
Sadly, there are a few forums which do a disservice to the patients and to all forums. They can be dominated by writers who are ill-informed, self-serving and just plain crazy. There are dangerous claims, and the vulnerable patient who is seeking help can be swayed away from more credible sources.
I think it is incumbent upon the medical world to be aware of the good, bad and the ugly forums and make recommendations that are healthy for the patient. It is my observation that the very best doctors welcome the education that comes from the good forums, and with that, his patients are protected from the bad and the ugly.
Thanks for sharing. I could not agree more. I think that if physicians embrace online health forums and are able to refer their patients to the good and reputable forums, this will be a nice compliment to the patient’s overall care. However, a very real concern is that primary care physicians are becoming overburdened with responsibilities. It will be a challenge to get physicians to embrace this on a wide level, but definitely well worth it.
I co-chair PCORI’s Communication and Dissemination of Research Advisory Panel. I appreciate your post and thoughts. Research is ink on paper unless the word gets out to people at the center of care (patients, family, clinicians). Each communication channel has its strengths and weaknesses. The best channels have moderators that can vet the quality of the information. Yet, the extreme of vetting is the peer reviewed journal. The challenge with that channel is limited access, sometimes removed from real life.The other extreme is the water cooler. Different limited access, who knows the source or applicability, yet completely unfiltered. I support a variety of channels, learning theri strengths and weakness
It’s great to have young people like you, Cleo, discovering that when you take a closer look, it becomes harder to make broad generalizations and dismiss online communities as dangerous or irrelevant.