By Joyce Ho
Since the advent of the Internet, individuals have taken a more hands-on approach to managing their own health. Instead of waiting to visit a family practitioner, one can simply perform a web search for his or her symptoms and websites will produce a list of diagnoses. Patients who don’t want to wait for a clinical trial to test drug efficacies can use online tools to join an informal study of off-label drugs on their own. More and more often, physicians participate in open forums to disseminate medical knowledge to the general public.
Social media in particular has revolutionized how patients and doctors interact with each other. Communication barriers are being broken with services like email, Twitter and Facebook. Getting access to trusted and peer-reviewed resources is easy, and finding a community of others going through similar disease experiences no longer requires joining a physical support group.
At Ning, several health-related groups have focused on implementing the best ways to harness the power of social media for medical purposes. The following are a few themes we picked up from our clients.
Learn to Live with Your Disease
Many Ning-supported medical and wellness websites give patients a platform to make their voices heard in a community of other users who understand and can provide support for the disease. One example of this is the blogging feature, which allows users to publish blog posts about anything on their minds. By allowing for constant reflection and feedback from others going through similar and shared experiences, these websites provide a positive space for users to explore how they and others live with this disease.
Tara is a member of TuDiabetes.org®, a Ning website designed for diabetic patients to come together and share resources, get support, and help each other live with the disease. The following is an excerpt from her introductory blog post:
Hello, tudiabetes, I’m Tara.
I was diagnosed 6 months and 13 days ago with Type 1 Diabetes. I’m 22 years-old, work out on the regular, and no one in my family has ever had this disease so to say it came at a bit of a shock is an understatement. Diabetes wasn’t even on my radar, I’ve never known anyone with the disease and I knew next to absolutely nothing about it. But when the nurse checked my blood-sugar and a result of 579 came staring back at her, there was no question about it- I have diabetes…
As site creator Manny Hernandez explains, the idea for using social media for a greater good appealed to him, and after he was diagnosed with type 1 diabetes, the idea dawned on him to create a community for diabetic patients, a site that has since been described as “Myspace on insulin.”
“In TuDiabetes.org®, we write blog posts, exchange ideas in discussion forums, share photos of ourselves and our loved ones and videos that we find useful and informative,” wrote Hernandez on the Ning community.
TuDiabetes.org® offers a unique tool, TuAnalyze, that allows users to track their Hemoglobin A1C level. Hemoglobin A1C is a marker that gives patients an idea of how well they are performing with long-term blood sugar control. TuAnalyze, developed jointly with Children’s Hospital in Boston, gives users a tool to record, share and compare their own diabetes information against community aggregated data maps. Through this tool, TuDiabetes.org® helps patients manage their disease, another way of helping them learn to live with their condition.
Connect and Receive Support
On December 1, 2011, a member on Living with TN posted that she was feeling nervous a few days before a Micro Vascular Decompression surgery, the gold standard surgical treatment for trigeminal neuralgia (TN). Within a few days, other members commented back, reassuring her of her choice in doctor and treatment, pointing her to more resources within the website.
This is just 1 example of how Ning sites are bringing people together to create collaborative communities supporting members going through similar experiences. The traditional support group has evolved into online forums, discussion boards, and chat platforms, allowing members to connect with others like themselves. Members can even send each other virtual “gifts” to other members at AVMSurvivors.org, a Ning site for members battling arteriovenous malformations, a disease of the blood vessels. These gifts consist of icons displayed on users’ profile pages and are meant to be signs of comfort and support.
The communities created through these Ning sites are also meant to provide sources of encouragement. A new campaign called the “Thrive Challenge” was recently started at Vega Community. Members post their work out and fitness goals for 2012 and beyond. By doing so, the community can continuously encourage members to keep on track with their targets and celebrate successes.
At Raw Food Rehab, a Ning site for individuals partaking in the raw foods diet, members can join different groups that the site lists as “rooms.” The rooms contain more specialized discussions on topics ranging from books, women’s health, tools and gadgets for making raw food, and more. One room is titled “The Chapel,” where members can post about prayer requests and discuss spiritual support. Though these discussions are not purely centered on raw food, these parts of the community connect like-minded people with similar goals for further conversation about various aspects of their lives.
Share and Access Resources
A common thread that links every health-related site on Ning is the wide availability of resources, either through forums and live chats or information packets available for download off these Ning communities.
Forum discussions allow members to post information for sharing or frame informal questions for others on the site to answer 24 hours a day, 7 days a week. Posted content depends on the nature of the website. For example, users have an outlet to recommend wig manufacturers and stores to buy wigs for individuals who have alopecia (hair loss) related to medical conditions. For patients allergic to gluten, Gluten-Free Faces provides a space to share tasty recipes from others suffering from the same condition.
Innovative ways to share information through media-rich features like pictures and videos give users more tools for communicating disease-specific knowledge. At TuDiabetes.org®, videos demonstrate how to use certain types of insulin pumps much better than written manuals. Members can also post videos of themselves and their journey with diabetes, or inspiring speeches that help them with their treatment course.
Information exchange is not only among patients – several Ning communities are centered on physician communication within the field. DoctorsHangout.com is a Ning site specifically created for social networking among medical students, residents, and physicians. Here, members of the medical community can ask their colleagues, in and out of their specialties, for advice on tough cases and share interesting clinical findings, instantly. Users also post about study tips for board certifications and medical school standardized exams. The ability to post media-rich content allows members in the medical field to share images of physical findings and videos highlighting different surgical techniques.
For radRounds.com, image sharing is especially important as the Ning site allows radiologists to ask colleagues advice about reading different types of films (X-rays, CT scans, MRI, etc.). This site offers unlimited storage space so doctors can upload images and files for consultation, and physicians can stay up-to-date with the latest radiology news and technology through forum discussions. By connecting physicians, Ning websites facilitate greater information sharing to better physician knowledge and, ultimately, patient care and health.
About Joyce Ho
Joyce Ho graduated from Stanford University with a BA degree in Human Biology. She is a third year medical student at the Stanford School of Medicine and is currently participating in the NBC News Fellowship in Media and Global Health. Read her blog or follow her on Twitter @MedGlobalHealth