Inspire partners with Stanford University School of Medicine

We are pleased to announce we have partnered with Stanford University School of Medicine to provide content to Stanford's "Scope" blog. We will be coordinating publication of a column by an Inspire patient or caregiver each month, to bring perspectives of patients to a blog geared toward clinicians and clinicians-in-training.

The first guest column, in February, came from Becky Dennis, an encephalitis survivor and a board member of Inspire partner Encephalitis Global. Becky's column, An encephalitis journey: A dozen doctors and 2.5 years, coincided with Rare Disease Day 2012. The second column, Dr. Google: Threat or Menace? was written by patient advocate Laura Haywood-Cory, one of the "SCAD Ladies" from the Inspire/WomenHeart community.

The Scope series will continue with columns from members of Inspire's Lung Cancer Survivors Support Community and the Bladder Cancer Advocacy Network Support Community on Inspire.

"I'm Not the Me I Remember"--New special report by Inspire and Encephalitis Global

In recognition of Rare Disease Day 2012, Inspire partnered with advocacy organization Encephalitis Global to produce a free online special report, "I'm Not the Me I Remember: Fighting Encephalitis." Click here to download the 32-page report. The report was based on a detailed online survey of over 250 members of the Encephalitis Global Support Community on Inspire.

The report received media attention around Rare Disease Day. ABCNews.com wrote about the report in this article, Encephalitis Survivors: Lonely Battles to Reclaim Lives.

Inspire in the News

• The "SCAD Ladies" research from the Inspire/WomenHeart Community continues to get media attention. The San Antonio Express-News profiled one of the "SCAD ladies" in a recent article. Patient advocate Katherine Leon, the prime mover in the SCAD patient-initiated research, will speak at the Association of Health Care Journalists' conference in Atlanta in late April.
• Med Ad News interviewed Inspire co-founder and CEO Brian Loew for an article entitled, Just Click Here.
• Amir Lewkowicz, Inspire co-founder and vice president for partnerships, was quoted in iHealthBeat, a health IT publication, in an article, Social Media Offers New Recruitment Strategy for Clinical Trials.
• Helen Palmquist, a longtime member of the Inspire/Ovarian Cancer National Alliance Support Community, wrote a guest column on the health advocacy site ePatients.net, entitled, Supporting my cyber-sisters with words of hope.
• Brian Loew will be speaking at Doctors 2.0 and the Drug Information Association (DIA) conferences. At DIA, Loew will be on a panel with Inspire partner the National Organization for Rare Disorders (NORD). Also, Inspire will present at the BIO International Convention in June.

Newest Inspire Communities

We are proud to welcome our newest partners StopCAIDnow, Joe Niekro Foundation, Association of Peyronie's Disease Advocates, and the Pulmonary Fibrosis Foundation. Inspire also recently launched a COPD Support Community.

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

Partner Spotlight: The Asthma and Allergy Foundation of America

We spoke recently with Talisa White, external affairs specialist at the Asthma and Allergy Foundation of America, an Inspire partner, about how AAFA uses social media to further its mission.

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

White: The Asthma and Allergy Foundation of America (AAFA) is a not-for-profit organization founded in 1953. We are the leading patient organization for people with asthma and allergies, and the oldest asthma and allergy patient group in the world. AAFA is dedicated to improving the quality of life for people with asthma and allergic diseases through education, advocacy, and research. We provide practical information, community based services and support to people through a network of Regional Chapters, Support Groups and other Local Partners around the US. AAFA develops health education, organizes state and national advocacy efforts and funds research to find better treatments and cures.

Inspire: What do you think makes your social media offerings strong?

White: There are more that 60 million people in the Unites States that suffer from asthma and allergies. That alone makes our social media offerings strong. AAFA's social media gives the asthma and allergy community what they are looking for. We generally use Facebook, Twitter, Inspire, and YouTube to deliver information about asthma and allergies. Our information include basic facts, links to helpful resources for an array of topics, information about various laws being passed that directly affect the asthma and allergy community, fun activities that help children learn about asthma and allergy, updates on new and discontinued medicines, activities of agencies such as the EPA that does work to help protect sufferers, and much more. The information we provide via social media efforts can have a ripple effect, we educate our thousands of followers who, in return, share that knowledge to those around them.

Inspire: What do you think makes your social media offerings strong?

White: AAFA measures our social media efforts in a variety of ways. Tools like Facebook provide reports that give statistics about traffic to our page and the number of people who are actually talking about our efforts. We can also measure by the sharing of our content by our fans. We also have a "how heard" section on our database that lists different ways the community can hear about us, and when people contact our agency they can let us know whether it was through social media or another avenue. For sites like Inspire, we measure our efforts by the number of people who take the time to engage in our discussions. A site like Twitter is measured by the continuing rise in the number of followers and "retweets" by our followers.

Inspire: How do you make social media actionable?

White: AAFA posts content in a way that generate responses. This includes polls, survey questions, and posts that peaks asthma and allergy sufferers' interest. Not only do our posts allow interaction between our fan base, it allows us to interact with them on a personal level as well. We allow people to post questions and stories on our social media communities which enable AAFA and fans to comment, share information, encourage, empathize, etc. We also have monthly sweepstakes and giveaways which are engaging events that allow us to reach out to a greater number of people.

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

White: Our biggest stakeholders are people living with allergies and asthma. AAFA has learned to reach out via social media in easy, fun, informative ways. Instead of just bombarding the community with information, we add graphics to make it more attractive and keep the information short with the most important attributes and a link to the source so people have the option of reading in detail. As mentioned before, we also learned to make our posts engaging and more personal, with the hopes that they support our efforts by volunteering or donating so that we can continue to achieve our nonprofit mission.

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

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 and caregivers through collaborative technologies. Inspire builds the online health and wellness communities in partnership with national patient advocacy organizations, and helps life science organizations connect with these highly engaged populations.

To learn more about Inspire, please contact Amir Lewkowicz, Vice President of Partnerships. Please visit us online at www.inspire.com.