New series of patient insights on "Occupy Healthcare"

Inspire has partnered with Occupy Healthcare, a Web site intended to serve as a forum to discuss ways to improve healthcare. Inspire CEO Brian Loew will serve as one of the Occupy Healthcare contributors. Inspire will help produce periodic guest columns from patients and caregivers on Inspire to bring their voices into the health care debate.

The first column, Gambling for treatment: A rare disease profile of tuberous sclerosis, came from Marlo Schepper Grolnic, an active member of the Tuberous Sclerosis Alliance/Inspire Support Community, and a regional leader of the Tuberous Sclerosis Alliance.

Q&A article with Dr. Howard Luks

As part of an ongoing series, Inspire interviewed Howard Luks, a New York physician well known as a speaker and writer on topics related to healthcare social media and patient empowerment.

The interview prompted dozens of comments from Inspire members, reacting to Luks' call for patients to find themselves new physicians if patients are frustrated by their current doctors' unwillingness to communicate effectively with the patients. In response to an Inspire member's comment about the article, Luks wrote, "Patients can drive physician behavior (and) for physicians to ignore what is happening in social and digital media is to potentially ignore their own relevance as we move years down the road." Click here to read the interview.

Inspire in the News

• Health Magazine cited Inspire as a resource in an article in its May edition, Get the Right Diagnosis. . . Every Time.
• PharmaVOICE magazine interviewed Inspire CEO Brian Loew for the article, Patient Communities: Getting to Know You.
• The latest Inspire column in the Stanford University School of Medicine Scope Blog, Clinical Trials: My Next Good Chance, appeared in mid-April.
• The WomenHeart Support Community on Inspire was featured in a column, Health Journalism from a Patient's Perspective.
• Brian Loew will be speaking at Doctors 2.0 and the Drug Information Association (DIA) conferences in May and June, respectively. At DIA, Loew will be on a panel with Inspire partner the National Organization for Rare Disorders (NORD).

Newest Inspire Communities

We are proud to welcome our newest partners: CARD: Center for Autism and Related Disorders, Red Hot Mamas, American Partnership for Eosinophilic Disorders, and Cloves Syndrome Community.

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

Partner Spotlight: ThyCa: Thyroid Cancer Survivors' Association, Inc.

We spoke recently with Gary Bloom, executive director of ThyCa: Thyroid Cancer Survivors' Association, Inc., about his organization and its social media strategy.

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

White: Thyroid Cancer Survivors' Association, Inc. is an international nonprofit organization of thyroid cancer survivors, caregivers, and health care professionals. We're advised by an international panel of 34 thyroid cancer experts, and serve anyone affected by thyroid cancer. Unfortunately, thyroid cancer is one of the few cancers that's increasing in incidence and is now the fastest increasing in both women and men. We're dedicated to free education and support services, raising public awareness of thyroid cancer, neck checks for early detection, and raising funds for research.

Our free services and resources include our extensive educational web site, more than 100 in-person and online support groups, social media groups, a toll-free phone line and e-mail response team, a person-to-person network matched by diagnosis and other criteria, patient information packets, Thyroid Cancer Basics handbook, downloadable Low-Iodine Cookbook, pediatric backpacks, and more.

We sponsor an annual 3-day International Thyroid Cancer Survivors' Conference, now in its 15th year, plus numerous seminars and workshops. To raise awareness, we sponsor Thyroid Cancer Awareness Month, a worldwide observance each September. This year marks ThyCa's 10th consecutive year of awarding thyroid cancer research grants; they've gone to researchers in four countries.

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

White: ThyCa was literally born via the Internet 17 years ago when thyroid cancer survivors started finding each other through the outreach and chatroom group started by ThyCa Co-Founder Karen Ferguson. Thanks to online networking, plus our hundreds of face-to-face events for survivors, caregivers, and health care professionals, people with thyroid cancer no longer need to feel alone. Our social media include our Inspire Online Support Community, Yahoo groups, Facebook, and Twitter. These online support services and education connect people around the world.

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

White: Like so many on social media, we track metrics, "listen", and use varied approaches and content to engage friends and followers and to build community. We track membership, participation levels, topics, concerns, comments, feedback, questions, and suggestions, adapting as we go. Doing site analytics helps us determine how people find our web site, our free materials, and our face-to-face events.

Inspire: How do you encourage social media to lead to action?

White: We post frequent news updates about thyroid cancer and opportunities for involvement, including seminars, support group meetings, workshops, and the annual conference. We regularly invite people in our online communities to help raise awareness, and take part in activities and events that support our four-part mission of education, support, outreach communications, and research funding. We also invite participants to weigh in on physician-developed surveys, to advance medical knowledge and improve treatment and care.

Social media has been a great way to build awareness and relationships, get to know the communities we serve, bring more people into active involvement on behalf of those diagnosed with thyroid cancer, as well as the general public, for whom awareness of the importance of neck checks will lead to earlier detection of a thyroid health issue.

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

White: Our involvement in social media has reaffirmed our commitment to ongoing interactions and regular communications with everyone. It has also greatly aided our efforts to share breaking news quickly and easily, such as announcing the latest clinical trials, research-related news and news impacting treatment and follow-up.

For instance, we were able to keep our friends and followers updated on shortages of Thyrogen®, a drug used in papillary and follicular thyroid cancer care, and what options for people were if they were planning to use the drug. We use social media in many other ways: to share updates on event plans, to thank volunteers and supporters, and to send progress reports on our ongoing thyroid cancer awareness campaigns.

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.