Partner Spotlight: Scleroderma Foundation

We spoke recently with Christina Relacion, Communications Manager with the Scleroderma Foundation, an Inspire partner.

Inspire: Tell us briefly about the Foundation and its mission.

Relacion: The Scleroderma Foundation has a three-fold mission: support, education and research. Our goal is to help patients and their families by providing support programs, peer counseling and physician referrals. We want to educate the public about what scleroderma is through awareness events and campaigns. Finally, we want to fund research to improve current treatments, and ultimately, find the cause of and a cure for scleroderma and related diseases.

Inspire: What do you think are the underpinnings of what makes your group, the Scleroderma Foundation Support Community, strong?

Relacion:The Foundation's online community is inherently strong. Since scleroderma is considered an "orphan" disease, or a rare disease that affects so few of the U.S. population, there is little known about it and very few outside the scleroderma community are aware that it exists. Because of that distinction, our community strives to find out as much information as they can about the disease to educate themselves and others.

We are very lucky to have such a vocal community. For many scleroderma patients, they have never met anyone else suffering from the disease. Inspire and other online communities provide these individuals and their family and friends with an outlet to connect to others who are just like them. It gives them the hope that they are not alone in this fight. The strength of the Scleroderma Foundation's online community comes from the hope that is passed along through a supportive online environment, where users openly discuss their illnesses, personal stories and struggles.

Inspire: Do you use the Support Community and other social media as a way to assess your members' concerns, and if so, specifically how do you do it?

Relacion: We consistently search Inspire and other social media sites for specific concerns and trends from the scleroderma community. We pass along these medical trends that we see occurring in the population to our Medical Advisory Board (MAB). The MAB then answers questions in our quarterly member publication, the Scleroderma Voice.

We use Facebook and Twitter to keep a pulse on our members, as well. The Foundation regularly asks our online community what we can do better to meet their needs such as what content would they like to see in our weekly e-mail newsletter.

Social media is all about creating a two-way street of conversation with your audience. It helps us do a better job of providing our members the best content and resources to ensure that they have the tools they need to be educated about scleroderma.

Inspire: How does the Foundation measure its social media efforts?

Relacion: While quantitative results are available to measure our social media efforts (such as how many clicks or how many "likes" to a Facebook Page), much of our efforts are measured through qualitative results.

For instance, recently on our Inspire discussion board, a user posted about a free informational binder that we offer as a resource. Her personal review of this resource led to a number of inquiries to our National Office helpline. We were thrilled that more people wanted information about this resource based on the personal recommendation of one discussion board user. Most importantly, we could provide these individuals with more information and tools to educate them further about scleroderma, which is one of our primary goals.

Still, we do use quantitative results so we can have a baseline measurement of our social media efforts. By using tools such as Facebook Insights, Google Alerts and Analytics, and HootSuite, we can maximize our social media presence by targeting content for our online community. Additionally, these tools help us monitor our marketing efforts to see if they have helped increase awareness and extend conversations about the disease, and measure the perception that people have of the Foundation.

Inspire: How do you make social media actionable?

Relacion: It's important before you get started with social media to have a plan in place. There is more to social media than simply starting a Facebook page or creating a Twitter account. Social media should be viewed as another tool in your marketing arsenal. You should have a specific plan in place with goals and outcomes so that social media can work for your organization. Our social media strategy will not necessarily fit another group. You need to decide as an organization how does social media fit your needs and goals.

For the Scleroderma Foundation, social media was a natural extension of our marketing and outreach efforts for education, awareness and advocacy. An example in regards to education for our members, many of our community members are unable to attend support group meetings due to their geographical locations or health problems. As a result, we created outlets for open discussion on platforms such as Inspire and Facebook. By doing so, these individuals now have the support system that is so essential for people living with chronic illnesses.

Inspire: Anything to add?

Relacion: The key is to think about your social media plan in advance. Know what you want to accomplish and create clear goals to reach.

Editor's note: If you'd like to suggest an association for the Partner Spotlight feature, contact Inspire's Communications Director, John Novack.

Three ways to get more from the Internet and social media

(This article by Inspire CEO Brian Loew was published in Resolve, for the journey and beyond, Spring 2011, the publication of Inspire partner RESOLVE.)

Type "infertility information" into Google and gape at the 4.4 million results. Try "diabetes resources," and you'll get 176,000 results. "Diet tips?" 874,000 results. "Breast cancer information?" 124,000 results.

In this information age, patients look to the Internet to become empowered help cope with medical challenges. But too much information can be paralyzing, discouraging, distracting... and even result in poor decision making.

Patients and caregivers have unprecedented access to online information. They march online for health information and support through online communities in increasing numbers. Online health inquiries have an impact on decisions and actions. According to a study by the Pew Internet & American Life Project, of the Americans who searched online health information, there are clearly more positive experiences than negative ones. To read more, click here.

Tech Tidbits: Use Google's Webmaster Tools to learn about your organization's site
By Walter Wlodarczyk, Chief Technology Officer, Inspire

Google's Webmaster Tools are a great way to get insight into your organization's Web site, and how individuals find and interact with it.

To use Google's Webmaster Tools, your webmaster needs to register your site with Google. The process is simple and takes just a few minutes. Once your site has been registered, you'll have access to the Google Webmaster Tools console, which provides a wealth of information about your site, from the perspective of Google. The console gives statistics about the search queries for which your site ranks, how many visitors those search queries send to your site, the sites that link to yours, how your site's performance compares to others, and much more.

The tools even suggest ways to improve your pages, to achieve better search rankings and referrals. You can use all of this information to tune how your site performs in Google and drive more visitors to it. You can find Google's Webmaster Tools at https://www.google.com/webmasters/tools/.

If you have ideas for future columns, email me at walter@inspire.com.

Inspire in the News

• Inspire was featured recently in an ABCNews.com article, Patient With Chronic Lung Cancer Becomes Hospice Caregiver. Danielle Leach, Inspire's Partnership Director, was featured in a video interview on iVillage. She also was a featured speaker at a healthcare social media forum sponsored by the Social Media Club DC.
• Brian Loew, Inspire's CEO, spoke at several events, including the IBF Digital Healthcare Innovation Summit. John Novack, Inspire's Communications Director, was on a panel discussion last month on the topic of patient online communities, during the Association of Health Care Journalists' conference. Amir Lewkowicz, Inspire's Vice President of Partnerships, will speak at the careinnovators Health Tech 2001 conference in May.

Newest Inspire Communities Announced

We are proud to announce our newest partners, the National Eczema Association, the National Family Caregivers Alliance and the National Association for Continence. Coming soon as an Inspire partner is the American Brain Tumor Association.

If you are interested in starting a community, please contact Amir Lewkowicz.

About Inspire

Founded in 2005, Inspire is the leading provider of online patient community solutions. Inspire provides safe, secure, and engaging online communities for patients, their caregivers, and their families, through collaborative technologies. By enabling those affected by medical conditions to seek out and help one another, Inspire fosters vibrant, effective, and close-knit social networks.

For additional information, please visit www.inspire.com.