A bimonthly resource for the Inspire community of healthcare leaders
March/April 2011
"I no longer feel alone."
Dear partners,
There are so many exchanges of information and support across Inspire that sometimes we don't pause to reflect on what's really being shared. When we do, we more deeply appreciate the members.
I was struck recently by the comments of a Canadian woman who joined the Scleroderma Foundation Support Community earlier this year.
"I no longer feel 'alone' with all the changes my body is experiencing," the member wrote. "Every time I get a new symptom, all I have to do is go to Inspire and realize, yup, it's the Scleroderma, and I'm not alone. No one 'really' understands, unless they're experiencing it themselves!"
A fellow member, a California woman, quickly replied, "I come on here every day, although I don't post or respond everyday, but this is the one place I can go to where I feel like I 'fit' in. I have supportive friends and family, but they just don't 'get it.'" She added, "I don't know how I would feel or manage without this support group."
Those exchanges--and we see them daily--demonstrate the power of Inspire, and the sharing that goes on in each group.
Thank you for being part of Inspire. As always, feel free to forward this newsletter to others who may be interested in reading it, or contact me with any questions or feedback.
Brian Loew
CEO, Inspire
Partner Spotlight: Encephalitis Global
We spoke recently with Wendy Station, co-founder of Inspire partner association Encephalitis Global, a support organization based in Vancouver, British Columbia, and in New York.
Inspire: Tell us briefly about Encephalitis Global and its mission.
Station: Encephalitis Global's mission is to share information and support between survivors, caregivers, loved ones, and people who seek to understand. Also, we strive to raise awareness among relevant professionals and the wider public about the condition and subsequent problems, and to promote research into encephalitis.
Encephalitis Global's founders are Wendy Station of Vancouver and Ingrid Guerci of New York. We are both encephalitis survivors. We recognize the value in creating an online community where members can share information about encephalitis.
Inspire: What made you want to create the Encephalitis Global Support Community? You had an MSN group, correct?
Station: Encephalitis Global's first online discussion forum was extremely difficult for us to manage. It was an MSN public group forum where random members of the public would join and make extremely inappropriate and hurtful comments. We worked with Inspire to migrate the MSN group onto an Inspire platform. The Encephalitis Global Support Community on Inspire offers a level of professionalism and ease of use, which has reduced our membership "babysitting" to zero.
Inspire: Have you seen an overall change in the community and if so, how?
Station: Encephalitis Global quickly saw an increase in activity on the Encephalitis Global Support Community, which became an excellent resource for sharing information and support. Since starting the Inspire forum in the summer of 2007, we've enjoyed a steady increase in membership. We currently have almost 1,000 members, and an average of 200 messages, responses and/or journal entries are posted each week.
Inspire: What are the underpinnings of what makes your community strong?
Station: One community member, in an online review of the Encephalitis Global Support Community, wrote: "Encephalitis Global, Inc. provides an excellent source for survivors of encephalitis, caregivers and family members. Encephalitis, recovery and rehabilitation can be mysterious, puzzling and extremely stressful for all involved. Whether the formal diagnosis is viral, bacterial or a resulting condition from head and brain injuries, the Encephalitis Global, Inc. forum is a place for survivors and caregivers to gather and share experiences and suggestions. Common residual deficits, both cognitive and physical, are easier to understand and cope with when information is shared among survivors and other caregivers. The founders of Encephalitis Global, Inc., Wendy and Ingrid, are both survivors of Encephalitis. They have provided online access to a safe and nurturing environment."
One of the bittersweet problems with a support community is that as folks heal, they tend to step away from their support group. While this is an excellent sign of progress, it also makes it very difficult to rely on a backbone of volunteers to assist with continuing to share support. Ingrid and I have been involved now for more than ten years.
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?
Station: We use the Community in many ways. When a member of the media seeks to contact survivors such as our members, we can share the information with our group, while respecting their privacy. When a member has a concern about a personal issue involving a family member, then can easily post information about this issue, and receive swift feedback and support from others who have "been there," who have experienced similar issues and concerns.
One feature that may seem minimal is the search feature. With this feature, a new member of our Community can search for details specific to their inquiry, and see in an instant where that topic was discussed previously at our website, what answers were suggested, and which members may be the best informed on that topic.
Inspire: Associations, particularly smaller ones with very niche audiences, struggle with figuring out the return on investment in social media, such as Facebook, Twitter, and the Inspire communities. How do you make social media actionable?
Station: We are a small registered charity, trying hard to help people who could not find help. Inspire's involvement has raised our social status and made us a very believeable organization. As mentioned earlier, we found that informal media can be more of a social catastrophe than a beneficial information resource; to use Inspire to focus on our topic has been a positive step in our success.
If you'd like to suggest an association for the Partner Spotlight feature, contact Inspire's Communications Director, John Novack.
Online Annual Reports: A Sampling
(The following article comes courtesy of The Chronicle of Philanthropy.)
Online Annual Reports: a Sampling
More and more charities are creating all-digital editions of their annual reports. The new versions make liberal use of audio, animation, and video rather than long, text-heavy articles. Following are some examples of how some groups are presenting their annual reports online:
Charles Stewart Mott Foundation
The Mott Foundation showcased its grant making in South Africa by featuring audio essays by four of that nation's luminaries, including Archbishop Emeritus Desmond Tutu, as an addendum to other information about the grant programs.
The Duke Endowment
The Duke Endowment's online annual report emphasizes the fund's history, while also offering photos, articles, and video depicting its grant programs in the areas of preventing child abuse, fighting hunger, and improving mental health.
To read the rest of this article, click here.
Tech Tidbits: The impact of "e-patients"
By Walter Wlodarczyk, Chief Technology Officer, Inspire
On Monday I attended an event, hosted by NYC Health Business Leaders, which explored whether patients are better off with the explosion of health and medical data online. Panelists included Dr. Scott Haig, who wrote the much discussed article, When the Patient is a Googler. The panel discussion considered the impact of online health information on doctor/patient relationships and the pros and cons of online physician ratings. Some of the most-discussed topics:
- Haig enjoys the doctor/patient relationship more with an informed patient, but there's a lot of suspect data online that's there because of a financial interest. For patients, the financial interests of the publisher of the data are an important consideration.
- Mitch Rothschild, CEO of physician rating site, Vitals.com, countered the contention that generally unhappy patients are the ones who go online to rate physicians by noting that 75% of the ratings made on Vitals are positive.
Check the NYC Health Business Leaders site soon for video of the talk, and information about future events.
If you have ideas for future columns, email me at walter@inspire.com.
Three ways to make Facebook worth your time
We hear from partner members that they use Facebook to engage members in more general ways, and direct members to discusions on their Inspire communities that relate more toward clinical/personal themes. Try these three quick tips:
- Are you posting your newsletters/journals/ezines on Facebook? Don't miss the opportunity to extend your message. It's content you've already developed, so post your publications, or excerpts from them.
- Try a Facebook-specific contest. The prizes don't have to be big. Do you have association t-shirts, mugs, books, that you could offer as prizes? If you have a conference that you charge for, you could offer free registration.
- Promote an event and do a countdown. That way, you have changing, dynamic content, and you can generate excitement around your event. (Also, don't forget to use Facebook, Twitter, your own Web site AND your Inspire community, as a place to post videos, blogs, pictures, from your event. Only a fraction of your members can attend--use those social media platforms to engage with all the others.
How are you using Facebook? Have you seen good examples of associations leveraging Facebook? Let us know about it by sending an email to John Novack at Inspire and we'll share your thoughts with your peers in the next Community Update. Also, remember to connect with Inspire on Facebook by clicking here.
Inspire in the News
- Inspire has been featured recently in the Huffington Post, in an article that features Inspire partner WomenHeart, Health Populi, FOXNews.com, and the Health in 30 blog.
- Inspire's free compilation in recognition of Rare Disease Day 2011, The Road to Diagnosis: Stories from Patients with Rare Diseases, received attention from a number of media outlets, including About.com, the Stanford Medical School Scope blog and the R.A.R.E. Blog.
- Danielle Leach, Inspire's Partnership Director, spoke at TS Alliance Community Alliance Volunteer Leadership Training meeting in February. The Tuberous Sclerosis Alliance is an Inspire partner. Danielle also was featured on The Cancer Warrior radio show.
Newest Inspire Community Announced
We are proud to announce our newest partners, the Alzheimer's Foundation of America, the Ehlers-Danlos National Foundation and Cincinnati Children's Hospital Medical Center.
Coming soon as Inspire partners will be the National Family Caregivers Alliance and the National Association for Continence.
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. Contact us at team@inspire.com.
