A bimonthly resource for the Inspire community of healthcare leaders
Inspire makes it easy to create an online patient support community for your organization.
To learn more, please contact Amir Lewkowicz, Vice President of Partnerships.
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.
(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.
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:
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 firstname.lastname@example.org.
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:
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.
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.
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 email@example.com.