Inspire releases two special reports on patient empowerment

Inspire published two free online special reports, The SCAD Ladies Stand Up: Stories of Patient Empowerment, and Narratives from the NICU: Neonatal Intensive Care Units Through the Eyes of Parents, featuring first-person narratives from members of the WomenHeart Support Community on Inspire and the Inspire Preemies Support Community.

Partner Spotlight: Food Allergy Initiative

We spoke recently with Barbara Rosenstein, director of communications for the Food Allergy Initiative (FAI), about how the FAI uses social media to further its mission.

Inspire: Tell us briefly about your organization and its mission.

Rosenstein: The Food Allergy Initiative (FAI) is national, nonprofit 501(c)(3) organization dedicated to finding a cure for life-threatening food allergies, which affect more than 12 million Americans. Food allergies are a large and growing public health issue. Every three minutes, food allergies send an American to the emergency room. A recent study of 40,000 families nationwide showed that 1 in every 13 U.S. children have a food allergy-two in every classroom. In addition, 40 percent of these children have a severe or life-threatening allergy, and 30 percent have multiple food allergies.

FAI was founded in 1998 by concerned parents and grandparents. Today, we're the largest private source of funding for food allergy research. Since its inception, the organization has committed more than $75 million toward its mission. We fund research worldwide, clinical activities to improve diagnosis and treatment, public policy initiatives to increase federal funding for research and create safer environments, and educational programs to heighten understanding and raise awareness.

Inspire: What are the underpinnings of what you think makes your social media offerings strong?

Rosenstein: Studies have shown that food allergies have a greater negative impact on a child's quality of life than rheumatologic disease or insulin-dependent diabetes. What's more, this emotional burden affects the entire family. As one parent said, "This stress affects my work, my marriage, my parenting skills, and my outlook on life." As a result, families are passionately committed to finding a cure and keeping their children safe. FAI can call on an active community of families, medical experts, and other stakeholders who are eager to spread the word about new research developments, public policy initiatives, and other programs and events that affect their lives. In particular, our national Advocacy Steering Committee-a group of more than 20 prominent parent advocates-plays a central role in our outreach. Many of these advocates have their own blogs or access to a wide network of support groups across the country.

Inspire: How does your organization measure its social media efforts?

Rosenstein: Though we have had a social media presence (e.g., Facebook, Twitter) for a number of years, we have only recently launched a website that gathers metrics on entry points (social media, Google, etc.) Having developed benchmarks over the past six months, we plan to gauge the success or failure of our social media efforts based on the traffic and donations attributed to those points of access.

Inspire: How do you make social media actionable?

Rosenstein: This is a work in progress for FAI. We have found that, given a direct call to action, asking people to retweet a message is a successful way to push that message out farther and farther. Individuals have alert settings on their personal devices that enable them to instantly learn of updates on our Facebook and Twitter pages. This is a great way to push out links to news stories, goodwill messaging, or calls to action (for example, urging constituents to write their representatives to support key legislation) in fast and convenient bursts.

Inspire: What has your organization learned about using social media effectively for all of your stakeholders?

Rosenstein: We have learned that social media must be a key component of our organization's marketing strategy, but that it is not for all stakeholders. One strong segment of our supporters is not driven to spend time online, and we need to look to other ways to reach out to this group. On the other hand, one of our goals for the coming year is to reach out to food-allergic teens and college students; for this group, it is likely to be our first point of direct communication. For us, social media is a particularly effective tool for reaching advocates and people in communities where we don't have a brick-and-mortar presence. It is essential that our staff constantly evaluate and stay attuned to new trends in technology and social media.

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

Inspire in the News

• The Los Angeles Times interviewed Inspire CEO Brian Loew for an article, Health 411: Questions on the road to breast cancer treatment.
• Pharmaceutical Executive magazine quoted Loew in an article, "Improving Advocacy by Leaps and Bounds," in which Inspire partners the Alzheimer's Foundation of America and the National Organization for Rare Disorders were also featured. The article begins on p. 84.
• Ragan's Health Care Communication News featured Inspire in an article, Patients use social media to inspire Mayo Clinic heart research.

Newest Inspire Communities Announced

We are proud to welcome our newest partners, the Fibromuscular Dysplasia Society of America and the Lymphoma Research Foundation.

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.