Monthly Archives: January 2012

How Individuals Use Social Media to Personalize Medicine

By Joyce Ho

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.

From peers:

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.

From colleagues:

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

A new year, a better and faster Chat

At Ning, we’ve long believed in giving you and your members the flexibility to share and converse with one another in whatever means is optimal for your community – and today we’re launching a major upgrade to one of our most popular features: Chat.

We’ve rebuilt the new Chat from the ground-up, meaning we took a fine-toothed comb at how Chat should work with your 2012 expectations of web technology. The new Chat is made using HTML5, expanding the speed, options and customizations available to you through the feature. HTML5 also means that the new Chat is also now available on iPad and iPhone, Android-powered devices, and many of the newer mobile platforms available today.

Besides the updates we’ve made under the hood, we’ve also improved the readability as you use Chat. We’ve consolidated on white space, meaning you’ll see more of the conversation without the need to scroll through the past. Posts are grouped together, and appear under the same timestamp, name and avatar. After 1 minute of inactivity, we’ll add a new timestamp, so that you’ll know when the conversation left off and picked up again.

We’ve also added more controls and customizations with Chat. Its appearance will match the standard font used on your Ning Network, and Chat also adopts your network’s color scheme. Much in the same way you can use the Language Editor to make tweaks and customize the language across your Ning Network, you can do the same with the new Chat. Appearance customizations are now available for Chat with CSS. You now also have a universal and easy way to toggle Chat’s notification sounds on or off, and even a way to upload your own sound to be used to notify you and members of new Chat activity.

There are 4 new and improved displays for Chat: bar, module, full page and pop-out, giving you and your members the ability to easily show and hide chat messages according to individual preferences. With the updated new Chat bar, we also now support a new and improved pop-out chat, which will allow Chat to be ever-present even as you and your members navigate around your Ning Network and the web.

You no longer have to toggle between the network-wide chat and one-on-one chats. Now, when a one-on-one chat is started, a new private window will open up and you’ll be up and running in a private chat. You can pop-out the private chat or let it stay in the Chat bar.

As the Ning Creator, an admin or a chat moderator, you’ll see an “x” next to any chat post. You’ll be able to delete the post, and temporarily suspend the member from Chat. A member’s suspension from Chat can range from 15 minutes to 24 hours – it’s up to you. You and your members can also choose to ignore chat posts by specific members. This means that you won’t receive private messages and posts by anyone you’ve ignored, even in the Main Room.

Want to know more? Check out our new Ning Help Center articles that explain all the details about the new Chat:

We’d like to thank all of the beta-testing Ning Creators who gave the new Chat a whirl and provided us with great feedback as we iterated this new feature. We’ll continue to take feedback from you and would love to know what you think. Feel free to comment below or on this Creators group. Happy chatting!

Proposed Legislation Threatens the Web

We’re writing as a company today to express our concerns with a couple legislative bills currently being debated in Congress (the “Protect IP Act” and the “Stop Online Piracy Act” (SOPA). Much has been written, many have opposed, but the beat goes on. We think this kind of legislation is a big deal that doesn’t come around often. Here’s why:

As background, these bills would give the US government and private individuals additional enforcement tools to combat websites that may be engaged in copyright infringement or counterfeiting. The goal is clearly well meaning—online infringement is a serious issue that demands serious enforcement. As with many things, however, the devil is in how the goal will be accomplished. In summary, court orders can be sought against any website (wherever located) that is believed to be engaging in online infringement. If an order issues, payment providers and advertising networks can be barred from doing business with the site, search engines must stop returning results for the site and domain name servers would need to blacklist access to the site’s domain name.

Even after Congressional revision last month, the current bills remain extremely broad. Legitimate websites can be put on an “American blacklist” without warning or an opportunity to defend themselves (whether that blacklist would even be effective at stopping traffic to an offending site is a whole other issue). A single complaint could trigger a blacklist, with the burden of proof on that website to get itself unblocked. This could lead to unprecedented monitoring of websites, subject to individual judgment (read: censorship). Here at Ning, we don’t think our Network Creators should be subjected to that kind of policy.

This would be a radical restructuring of Internet law. Oodles of unproductive and time-consuming litigation would arise to challenge and interpret the bills. We think it’s necessary to have a careful, broad-based debate on more targeted and effective measures for combating online IP infringement.

Here’s what you can do: Learn more, join the fight. Contact your Representative or Senator and tell them to oppose these bills. These bills are being debated again when Congress returns to session in late January. Or just use the power of social media—you can make a difference.