Comments for Support Group 2.0: Ten Places to Find Help Online

Support Group 2.0: Ten Places to Find Help Online

2008-04-10T19:06:31Z

With 1.3 billion people on the web today it's a safe bet that at least a few of them have shared experiences and the promise of the web as a global support group is something that is finally being realized. There have been specialized web sites for specific ailments for as long as there has been a world wide web, covering everything from lung cancer to obesity to social anxiety to alcoholism. But over the past several years, a new breed of general social networks geared toward physical and mental health support has begun to emerge. These sites link people with shared medical experiences and allow them to support one another in difficult times. Below are ten web sites that fall into this new category of "support group 2.0."

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PatientsLikeMe is a social network for people to share experiences based around mental and physical illness. People can use the site to connect with others experiencing the same issues, discuss treatments, and track progress. The site is relatively new and so far has communities for ALS/Motor Neuron Disease, Anxiety, Bipolar, Depression, HIV/AIDS, Multiple Sclerosis, OCD (Obsessive-Compulsive Disorder), Parkinson's Disease, and PTSD (Post-Traumatic Stress Disorder). People can connect with other patients based around specific symptoms they are experiencing or treatments they are trying, and they can read the latest research on the site. PatientsLikeMe plans to expand its communities into other health areas in the future.

Trusera feels a little like MySpace centered around health issues. People who join Trusera are given a profile on which they can share stories, keep a journal, and create discussions about the things they are dealing with. The site aims to connect people with similar medical backgrounds so they can discuss and share common experiences.

DailyStrength is a huge network of online support groups. The site lets users discuss medical conditions with people experiencing the same thing but with the anonymity of the Internet if they desire to stay hidden. Users also get MySpace-like social networking profiles where they can keep a journal, make connections, upload photos or videos and give out "hugs" to anyone who looks like they could use one. One of the most compelling features of Daily Strength is the treatment directory, where members can review treatments and let others know if and how well a treatment worked for them.

Hope Cube is another fairly new social network based around the idea of people providing support for others going through the same things they're dealing with. In addition to basic social networking features, the site has a Yahoo! Answers-like health discussion community, and uniquely has a list of trained professionals available as friends on the site. There are huge potential liability risks for doctors giving out advice over the Internet, so it is unclear just how much advice the Hope Cube doctors would be willing or able to give (right now it doesn't look like many of them have participated much on the site). According to the site, Hope Cube has plans to move into ZocDoc territory as well and do online appointment scheduling.

iMedix is a MySpace-style social networking site that links people based on common medical conditions. Users enter conditions they are interested in and the site uses tags to link them together. Beyond social networking, iMedix also adds a health information search engine to the mix. ReadWriteWeb network blog AltSearchEngines had a full review when the site launched last December.

Healia is a slickly designed health community site based around questions and answers. Users form groups around specific health issues and ask and answer questions in a Yahoo! Answers-style environment and the site has a list of trained medical professionals who participate as well. Healia tracks its top contributors using "Healia Points." Right now the points just get you on a list of the week's most helpful members, but in the future, says Healia, they may be redeemable for something more.

ICYou (a clever play on words where the IC, in this case, stands for "Intensive Content") is a health video sharing site. Patients and doctors upload videos sharing the latest health information, their own personal experiences, or advice for others. ICYou also creates some of its own content on the site, mainly consisting of interviews with patients and doctors.

Take the features of every site we've mentioned in this roundup so far, and you have TauMed. Along with social networking, TauMed has a question and answer site, topical health guides, communities based around specific ailments, health news, health information search, video sharing, patient stories, a drug database, and even a directory of doctors. Phew! With all that, the site is still pretty easy to get around and certainly has some helpful information to be found.

MDJunction is a network of online support groups and discussion boards that feels a lot like DailyStrength -- right down to the concept of "hugs." In addition to the discussion board based support groups, MDJunction has a MySpace-style social network with all the usual trimmings.

While Ning isn't specifically a health related support site, it is one of the best places to find social networks devoted to specific physical or mental health issues. Ning has over 220,000 social networks and is growing at a rate of 1,000 per day. Search the site for whatever type of support group you're looking for and you're likely to find a niche network dedicated to just that. For example, here's a search for "diabetes."

Bonus site: If you're craving a more face-to-face support setting, try Meetup to find a real world support group in your town.

Are there any general support group 2.0 sites we've missed? Let us know in the comments below.

Comment from Jeremy Lundberg - DLC-Solutions.com on 2008-04-10

2008-04-10T20:09:06Z

You should also include www.TheWellnessCommunity.org, which was one of the first online communities to provide free, professionally-moderated support groups for people with cancer. The site was launched in 2001 and provides support and education to over 300,000 visitors annually. At DLC Solutions, we have had the pleasure of being the Web technology partner for the site and have been able see the impact of these online support groups scientifically validated as being just as effective as face-to-face support groups in improving overall quality of life. Thanks for the article.

Comment from Walter Wlodarczyk on 2008-04-10

2008-04-10T23:02:48Z

Hello Josh. Great list. I'm the lead product developer at Inspire, and we also create communities focused on health and wellness. We've got over 150 communities online at www.inspire.com, covering the entire spectrum of health and wellness topics. What makes us unique is that we focus on creating communities for non-profit organizations and health-focused publishers. We've been at it since 2005 and have created communities for more than 20 non-profits, as well as U.S. News and World Report and Discovery Health. Our communities have all of the standard social networking features, and we pay particular attention to privacy. We give members a privacy option for every post and every aspect of their profiles.

The companies on this list are doing great work and helping many people, and that's really awesome to see.

Comment from Charles Knight on 2008-04-10

2008-04-10T23:18:41Z

I would certainly add OrganizedWisdom.com! Thanks.

Comment from Mark Fletcher on 2008-04-10

2008-04-11T05:40:11Z

I know it doesn't fall into the Web 2.0 category, but Yahoo Groups is, still, a fantastic place to find support groups of all types. Mailing lists are hard to beat for community and support. I was reminded of this recently when a member of my family was diagnosed with a rare form of cancer. There's a vibrant and active community on Yahoo Groups that provided an amazing amount of support for him (and us).

Comment from Ed Madara on 2008-04-10

2008-04-11T06:53:19Z

Hmmm. Why should those in need seek out these proprietary websites (which have their own agendaa), when for most illnesses, disabilities, caregiver, bereavement situations, there are hundreds of member-run and more empowering self-help support networks, which now all provide a variety of online capabilities. And they have a track record, and do a darn better job of truly advocating for and getting needed treatment, research, increased public and professional awareness, etc. Yes, a few needed new mutual help groups are growing from online networking, but not with any help from the aforemented latest wave of entrepreneurs. They really can't beat the "real thing" which offer both the online and local communiy support.

- Ed

American Self-Help Group Clearinghouse
http://mentalhelp.net/selfhelp/
provides:
- a keyword-searchable database of over 1,200 national, international, and model self-help support groups for most any specific illness, disability, addiction, bereavement situation, parenting, caregiver concern, abuse, or other stressful life situation;
- listing of local non-profit self-help group clearinghouses worldwide
http://www.mentalhelp.net/selfhelp/selfhelp.php?id=859
- suggestions on how to start either a community and/or online mutual help group;
- information on research of self-help groups - to see a summary of the more rigorous outcome research studies, you can see a copy of the chapter from the last 7th Edition of our Self-Help Group Sourcebook at:
http://www.chce.research.va.gov/docs/pdfs/KyrouzHumphreysLoomis2002.pdf
- and a registry for those trying to start new national or international support networks that don't yet exist in the world.
For information on any national, online, or model groups, one can also still phone and speak with a human being via our national helpline at 973-989-1122 (8:30am - 5pm Eastern, weekdays). But updated and complete group information is available simply through the search engine at our American website.

"Self-help groups are the largest sector of the defacto treatment system in the United States dealing with emotional problems for people. The number of visits that people make to a self-help group far outstrips the number made to a psychiatrist, or to a psychologist, or to a doctor, or to a minister."
- Dr. Ronald Kessler, professor of health care policy at Harvard Medical School.

Comment from Claudia D'Arcy on 2008-04-11

2008-04-11T16:27:19Z

I know the internet is a trully wonderful mechanism for support and I have personally found everything that I have needed online.
That said.. these "general" places make me wonder in a way. Granted there really cannot ever be too much assistance for those that need help, but as it has been said.. many previously exisitning sites are already in existance. The established sites not only already have the community established, but they are consintrated on the single issue.
What I fear is that these newer general places, that are so vast and diluted will overshadow the smaller less glossy, but more content rich sites..and the newbie needing the help will not find the real assistance.

Case in point..Adoption.com is hugly funded and owns domaines to just about everything relating to adoption, so anyone first searching online comes to them. But they are biased with their own agenda, and ultimatly owned by a religious organization that profits off of adoption. The real truth and support for many folks is beyond the big general site...but so many get stuck in the big guy thinking that it is THE place to be. And in the long run, they can get hurt.

In the same vein, when my teenager was faced with open heart surgery and valve replacement, I stumbled upon WebMD and various "bland sites" until I managed to find ValveReplacement.com. THEY were my godsend. It was VR.com, a user run forum, that not only provided support, they gave me real information regarding their own experinces, research necessary to decide which procedure my son would have, and helped me decide about the quality of my child's life.

IMO, these larger sites cannot be the be all and end all to ALL situations. Unless they point the user to the more consintrated sites, then they could very well be doing a disservice despite their good intentions.

Comment from Maria Sipka on 2008-04-13

2008-04-13T14:30:03Z

Whilst we're still on in the early days of indexing all communities and groups on the internet, users can search for specific health related issues at www.linqia.com I searched for 'Cancer Support' and found 193 groups across 5 social networks/ communities. We will index all the communities listed in this article. Thanks Josh.

Comment from Michael Massagli on 2008-04-14

2008-04-14T19:58:04Z

I would invite anyone who would like our answer to the question 'why try something new' and who would like clarity about our agenda to read our blog at:

http://blog.patientslikeme.com/

Comment from Michael Wilson on 2008-04-14

2008-04-15T03:35:32Z

One thing to consider with this list is that many people seek support via faith related sources rather than just via health or science related avenues. BeliefNet is a great example of a website with an online community in the faith/religion arena. I think they've done a great job of connecting together people around a myriad of faiths, from Christian to Zoroastrian. They even have a subgroup called Coping With the Loss of a Loved One Daily that seems to have provided a great support to people in this unenviable situation.

In full disclosure, I'm the CEO of the company that worked with BeliefNet to create the social network, but nonetheless, I think it's a great online community that serves as a great resource to people looking for help.