Social Media for Patients

by francine Hardaway on September 20, 2007

The panel on Social Media for Patients at Health 2.0 is awesome. There are already many good Web2.0 resources out there for patients.

Diabetes Mine is an advocacy blog for people with diabetes.

Sophia’s Garden is a healing community for parents with chronically ill children, and is a virtual community for parents of children with serious illnesses. When their daughter was diagnosed with a terminal illness, the founders developed the tools to collaborate and communicate with their friends, helpers, and medical team. Because there no tools, they developed HECO, a virtual world that functions just like the real world, in which families can collaborate across time and space. HECO gives families a survival kit and every family helps build it.

Each member of the community has an avatar, and can navigate his needs in a secure environment. The community collaborates through voice chat, VOIP.

Daily Strength is a comprehensive patient site with 600 interactive patient communities talking about specific conditions. Most were created from personal need, such as support with betreavement, bed rest, etc. Although it was created as an anonymouse community,
many people just come on and share their truth.

Inspire.com. Community site for caregivers and patients. Has alliances with large partners in heart and lung disease.partnerships with large providers. Its founders have discovered it is possible to join multiple groups within a larger umbrella providing support for people who may have more than one condition.

PatientsLikeMe provides simple tools to track relevant disease information, outcomes, and treatments in the ALS, Parkinson’s and MS communities. It was started by two guys whose brother has ALS, and gives very detailed information about his condition
Patients can Gantt chart all the treatments and interventions they are trying to manage their disease, including prayer! This is teaching patients some real cause and effect about the long term progression of a disease.
Patients make treatment decisions based on this information. Patients can click on a drug and find out what other patients are experiencing and bring that information to their own physicians.

Organized Wisdom promises to go back to the days when people surfed the web and used human curators. It has 50 guys curating the web to produce spam free search for users. Actually, it’s like a vertical Mahalo. They look at Daily Strength’s message boards and YouTube to get their information and believe that people are the best algorithm for finding the best content on the web. Every link is reviewed by a physician, who provides you with the best user groups and chatrooms.
Users can create links

MedHelp actually gets specialists to participate in its communities. But all its communities are also patient communities, which gives them a leg up on trading information.

{ 6 comments… read them below or add one }

Unity Stoakes September 20, 2007 at 12:23 pm

Thanks for blogging this so quickly! Was able to catch up right away since I missed my partner Steven Krein present. Wish I was there, but I feel like I am thanks to your blog!

francine hardaway September 20, 2007 at 12:40 pm

Your partner gave a great presentation and I Twittered him to tell him so! Nice to meet you. This is a great conference.

Dr.Uri Ginzburg September 20, 2007 at 3:52 pm

Hi

As a blogger and entrepreneur in the field of medicine 2.0 I enjoyed reading your review . The consumers social networks are important part of this field. I will mention your review in my next post.

http://blog.medical20.com/

francine hardaway September 20, 2007 at 4:12 pm

Thanks. And I will read your blog :-)

Karen Herzog September 22, 2007 at 7:49 pm

Hi Francine,

We appreciate your enthusiasm for the panel presentation and for our contribution to it. Thank you for spreading the word about Healing in Community™ Online (HICO). We’re continuing to refine the prototype and will let you know when we launch.

I saw that CarePages was one of your portfolio companies. I regret not writing a blog about our incredible journey of healing with our daughter, Sophia. When she was 3 1/2 years old (about 7 months before she passed on), I discovered both CarePages and CaringBridge. Since Sophia’s care was so demanding at the time, I opted not to start a blog. In retrospect, having a written account of those precious moments with her would have been invaluable.

HICO will not only support families in capturing their children’s stories like Sophia’s, but also harness the power of community to help families care for their ill children, and ultimately heal.

Should you know of any funders looking for a philanthropic project in the health 2.0 space, let me know. We’re a nonprofit and looking for seed funding for HICO.

Kelly October 10, 2007 at 9:56 pm

Its a great post. I will read and enjoyed this blog. Thanks for the nice post.

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