Partner Spotlight: Association of Gastrointestinal Motility Disorders

We spoke recently with Mary-Angela DeGrazia-DiTucci, founder of The Association of Gastrointestinal Motility Disorders, Inc. (AGMD).

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

DeGrazia-DiTucci: The AGMD is one of the oldest non-profit organizations in existence with a focus on digestive motility diseases and disorders. This year, we are privileged to announce that AGMD is commemorating its 20th year of service. The organization is most unique in that it is an international non-profit organization which brings together patients and family members as well as those in the medical, scientific, and nutritional communities. AGMD focuses on education, the dissemination of information, advocacy, outreach, research, and support.

AGMD is also one of the first non-profit organizations to hold a symposium specifically on digestive motility disorders with a distinguished panel of presenting experts, and an audience consisting of patients, relatives, friends, and members of the medical, scientific, pharmaceutical, home health care, and nutritional communities. This milestone event took place in 1997. Many organizations have followed this pattern finding it a great way to bring voice to those interested in digestive motility. AGMD has continued to have a symposium biennially. The organization has worked with the University of Kansas Medical Center Continuing Education in order to provide CME and CNE for its programs.It has also received the prestigious endorsement of both the American College of Gastroenterology and the American Neurogastroenterology and Motility Society for its symposia.

We provide pertinent information and many resources some which include, newsletters, educational materials, webinars, symposia, physician referrals, open telephone conversations, in-person educational support groups and telephone support groups for patients, young adults, spouses, parents, caregivers, and for those newly diagnosed, and social media connections. We also maintain one of the largest databases of digestive motility specialists and facilities from around the world.

Inspire: What do you think are the underpinnings of what makes your online community strong?

DeGrazia-DiTucci: When one is dealing with a rare medical problem, it automatically precipitates an environment of passion and purpose. When a patient or family member realizes that they are not the only ones going through their challenging journey, they immediately become comforted knowing someone else truly understands. For some, this is the very first place where they can voice their concerns and frustrations as well as chronicle their experiences and feel accepted and encouraged. For others, it provides a means of helping others, cheering them on, providing them with helpful information, in spite, or as a result of their own illness. It creates a sense of freedom, where no one judges and one is openly and graciously accepted. This is clearly evident in our AGMD Inspire Community.

There are so many "hot" issues that concern patients and families affected by digestive motility diseases and disorders.

Some examples include: the lack of awareness and education, the deficiency in the number of qualified experts and facilities, inadequate treatments, lack of understanding, inability to eat normally and enjoy food, the unpredictable nature of digestive motility diseases and disorders, the many misconceptions, coping with the symptoms, dealing with the emotional roller coaster, having an "invisible" illness, having so many complex medical issues, not being believed, and needing support.

These together with many other issues, create an emotionally charged, passionate, sometimes provocative, and volatile, and yet supportive community environment. People need a means of communicating their experiences, feelings, and concerns in a place of trust and comradeship. I am always so impressed by the questions posed, the supportive responses presented, and the depth of emotions that overflow throughout our AGMD Inspire Online Community. It is a family that shares common threads.

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?

DeGrazia-DiTucci: Yes, definitely! Every day, we view the entries that are posted by our members. We can see which topics are most frequently addressed, how many people respond, and what those responses contain. We also keep a monthly record of detailed stats including "hot topics" which help us to construct beneficial materials and craft impelling conversation starters.

We have been able to avert various crises and take action on certain issues through these assessments. And as a result of our assessment of our social media, AGMD has initiated and implemented new programs, educational materials, and resources, to help address issues and provide a broader means of information and support. We are also in the process of revising and adapting our main AGMD website in order to specifically help to address many of the needs and concerns posted on all our social media sites. We can see how one topic posted can create a major impact and influence actions by the community. One example of a boiling point came when someone posted on our AGMD Inspire Community, "Dr. Oz, Lazy Stomach. This article totally misses the mark misinforms." This post, referring to misinformation by a doctor featured on the Dr. Oz show, produced absolute outrage from our gastroparesis patient community.

It exemplified the need for abandoning generalized myths about this digestive motility disorder and highlighted the swelling of emotions that can grow from something that strikes deep to the core of those living the problem each and every day. AGMD was able to participate actively in this issue by collecting statements and testimonies from members and providing educational materials and medical documentation to submit to the Dr. Oz show and the doctor who misinformed the public. This is an example of how one social media incident became the impetus for immediate action on behalf of the community, other nonprofits, and AGMD itself.If members are looking for resources, need emotional support, have questions concerning dietary issues, parenteral and enteral tube complications, etc. AGMD is able to view these concerns and put into place, resources, materials and programs, to help the patient and family members. We are also able to immediately respond to concerns and announce important developments regarding digestive motility and AGMD. Social media enables AGMD to reach out to more people in need of help and hope.

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

DeGrazia-DiTucci: We take into account such things as the number of new members, the total number of members, the number of posts, topics, repeated topics, the ones with the most responses, those that receive no responses, and demographics, etc. When we post an event, we can use the attendance and comments as a means of measurement. We view and analyze the individual dashboards on our social media sites and see what the level of interaction is, the number of viewers, those who continuously participate, types of members, member specifics, number of fans and page rank.

These tools help us to improve our ability to reach out to more people with information that is essential to our members and viewers. It also helps us to publicize our organization, activities, special events, and provide helpful information. It also helps us to connect with other nonprofit groups and those in the medical, nutritional, pharmaceutical, healthcare and other professionally related industries.

Inspire: How do you make social media actionable?

DeGrazia-DiTucci: We review the data from all our social media dashboards and make in-depth comparisons. We evaluate by measuring and monitoring such stats as the amount of traffic, number of page views, interactions, likes, number of new members, comments, page views, keywords, and topics with the most posts. By doing so, we are able to analyze what works and what doesn't, create conversations that are engaging and pertinent, better able to target our audience and interact with our members, drive more traffic to our sites, and provide quality, active, and successful social media sites.

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

How to make sense of Twitter healthcare hashtags

We came across a blog posting that discusses common hashtags used on Twitter. Though the article is geared toward hospital-based professionals, it contains some practical information.

Click here to read it.

Remember to connect with Inspire on Twitter at @TeamInspire. Share news and events with us there, and we'll help you spread the word about the work you do.

Toren Joins Inspire's Board to Help Fuel Growth

Healthcare industry entrepreneur Richard B. Toren has joined Inspire's board of directors.

"We are fortunate to already have a great board of directors, and adding Rick Toren only makes it more so," said Inspire CEO Brian Loew. "Rick has such an accomplished background over 30 years as a five-time health industry entrepreneur, and a great deal of enthusiasm about Inspire and our mission. His involvement is already paying dividends."

Toren is chairman and president of CodeRyte, Inc., a Bethesda, MD-based medical coding company. As an executive at Survival Technology, Inc., Toren was instrumental in the development of the EpiPen.

"I've always been involved in improving health with software and services," Toren noted, "so it seems like a natural for me to be able to help Inspire grow."

Inspire in the News

• WebMD featured Inspire in an article, Social Networking Health Sites: What You Should Check.
• Inspire released a 21-page special report, Insensitive Comments and Their Impact on Preemie Mothers, based on findings from the online survey conducted on the Inspire Preemie Support Community. Among the media outlets reporting on the study was WBUR's CommonHealth, which published an article, 10 Things Not to Say to Parents of Preemies.
• Inspire was featured in profile by TODAY.com of a member of Inspire's Preemie Support Community, Preemie mom, preemie baby: Does it run in families?
• Brian Loew, Inspire's CEO, was a featured speaker at the Genetic Alliance conference in Washington, DC. Amir Lewkowicz, Inspire's Vice President of Partnerships, spoke at the careinnovators Health Tech 2001 conference in Boston.
• Danielle Leach, Inspire's Partnership Director, was featured in an blog by Dr. Ted Eytan, The ability to bring loss into the conversation.

Newest Inspire Communities Announced

We are proud to announce our newest partners, the Short Bowel Syndrome Foundation and the National Association for Continence. Coming soon as Inspire partners are the National Family Caregivers Association, Fight Colorectal Cancer and the American Brain Tumor Association.

Inspire has signed agreements with more than a dozen new patient advocacy organizations in the past several months. Inspire has increased its partnerships by over 35% in a year. "The number and diversity of our recent partners demonstrates that across all segments of patient care, our partners want to connect patients," said Inspire CEO Brian Loew.

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.