Social Media and Health Care: The Ning Connection

Joyce Ho is a Stanford-NBC News Global Health Media Fellow, in part funded by the Open Society Foundations. The  fellowship, which is designed to show how media platforms can have impact on global health, includes work with companies such as NBC News and Ning.

With so many different social media platforms today, it can be confusing to identify which accounts should be used for different purposes. Recently I’ve been looking at Ning, which is a lesser known but very powerful social media platform that allows users to make their own customized social website with an easy-to-use toolkit. Organizations can create personalized communities where users set up their own page, participate in forums, post videos, images, and blog entries, access resources, and interact with other users. You have absolute control over design, whether you want to use templates or create your own, and Ning staff are available to help with technological issues. “If you are familiar with Facebook, you can use this,” says Ben Munoz, founder of more than 30 rare disease support group sites on Ning.

A popular usage of Ning in the health sector is to create online support groups for patients or survivors of medical conditions. For example, TuDiabetes.org is a website designed for diabetic patients to come together and share resources, get support, and help each other live with the disease. The site, once described as “Myspace on insulin,” gives users a safe space to interact with one another and learn about ways to manage their condition from others’ experiences. TuDiabetes.org contains video tutorials on how to use different insulin pumps, and forums are lively with discussion about a plethora of topics from medication efficacy and doctor recommendations to emotional struggles with diabetes. Additionally, Ning sites can serve as springboards for action and communities can engage in advocacy for certain medical causes.

Because Ning is a versatile web platform, sites can also build add-ons to allow for additional user interaction much like Facebook has. For example, TuDiabetes.org launched TuAnalyze , a tool that helps 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 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. All TuAnalyze users agree to have their data sent to the Children’s Hospital Boston for research purposes; aside from that, personal information is presented as anonymized aggregate data on the diabetes maps viewable on the site. You can design similar add-on features to your site, to engage users and help them learn more about your organization, your cause, and what they can do to join in the fight.

I recently interviewed Ben Munoz, who has founded many disease support group sites. In 2006, Munoz suffered a life-threatening brain hemorrhage and he created an online support community to connect with other patients like him. After he realized how much such a community could do for patients, he went on to create Ben’s Friends, a network of online social communities for rare disease patients who often are struggling through their diseases alone. All of the sites that he has created are built on the Ning platform.

“Ning works and they have a confident technical team. I don’t have to worry about buggy software,” Munoz explains. “They have a really good product development team.” However, Munoz noted a few areas where Ning could make improvements. Sometimes the themes offered to clients could be considered too “busy,” utilizing funky urban themes, which add clutter to the site. Additionally, Ning is not yet as friendly as it could be to the disabled population—for example, it is not compatible with assisted technologies such as audio conversion. Munoz feels Ning needs to look into this up and coming area of web development since many support group users need these additional features.

Despite these drawbacks, Ning offers much more customization than Twitter or Facebook, and even more than that, it allows people interested in an organization’s topic to form an online community. My general impression is that on Twitter or Facebook, the emphasis is more on the organization; for Ning, the emphasis is on not only the organization but also users on the site and their interactions with one another. This means that to have a successful Ning site, you have to draw in a loyal user base who will continue posting and utilizing your webspace. That can be a difficult thing to achieve, but as it is with any social media outlet, commitment to maintaining the account is crucial.

2 Comments

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I am so grateful for this article and all the amazing social media that I am finding as a patient and advocate of a rare disease. I have been living with Cryoglobulinemia Vasculitis for several years but recently diagnosed in 2010. When I became seriously ill with kidney failure, I found it extremely difficult to find support as I searched for answers and my expectations for the future health. I recall the day I said to myself, "I would never let this happen to another person who is diagnosed with Cryoglobulinemia Vasculitis". I am happy to say, at this time I now have a small network of people on Cryoglobulinemia Vasculitis Organization facebook and on a couple other social sights that I am communicating with a couple others. My goals are extremely high therefore I am seeking advise and direction from my peers as I peruse my dream of creating an Association. At the present time I am looking for a medical intern for research and I have no idea how or where to start. If you can offer me any advise in this department or in social networking I would truly appreciate it.

Gratefully yours,
Marianne Vennitti
Cryoglobulinemia Vasculitis
CVO - Assistant Director
609-519-0585
cryogroup@yahoo.com

thanks so much for highlighting Ben's Friends!

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