http://www.cdc.gov/healthmarketing/NCHCMM2010/

If you are on Twitter, follow @jaybernhardt or @hcmm10 or #hcmm10 for updates.

Speaking of that Pew Research report, a representative of Pew just discussed its findings in a recent podcast about changing online demographics.

Thanks so much for sharing your insights. I put out the call on Twitter (my favorite mental snack shop) and got back the equivalent of good “slow food” (http://bit.ly/15eOt – thanks to @DrGreene for introducing me to that site)

Other responses from the Twittersphere:

@sterflu: just a thought, but patients most in need of health care might be least likely to be connected on frequent basis to Internet

My response: ppl w/chronic conditions are less likely to have access – but once online they use it w/passion http://bit.ly/A4Cjh

@mikey3982: Maybe there are some diseases where there is less of a correlation to social class? trying to think of some?

My response: Excellent q re social class & chronic disease (age is a big factor) too – any pointers welcome (and I’ll comb my data)

Plus some more sites to explore for evidence:

@Lauren_Rinker: help w/question re social networks & health: http://bit.ly/2fg253. See this for example: http://www.healthafterchemo.com

@kfatweets: We have experienced very similar growth, empowerment and collaboration in our online community as well. (http://www.kidswithfoodallergies.org/)

http://www.inspire.com/

Please add others!

Mary O’Connor, the founder and owner of the Cushing’s Help website (http://www.cushings-help.com) and message boards started with one goal in mind. She wanted to educate others about the awful disease that took doctors years to diagnose and treat in her life. Armed only with information garnered from her public library and a magazine article, she self-diagnosed in the days prior to the availability of the internet.

Mary’s hard work and dream have paid off. Others, with the same illness, the same frustrations, and the same non-diagnosis/treatment have been led by MaryO (as she’s lovingly called) to work with her to support, educate, and share.

The Cushing’s Help website soon led to a simple message board which then led to a larger one, and a larger. The site has numerous helpful webpages chock full of information. The members of this community have made a decision to increase awareness of the disease, the research that is ongoing with the disease, the doctors who understand it, and the lack of information about it in the medical field.

From this hub have come multiple Web 2.0 spokes. Many members have blogs, there is a non-profit corporation to continue the programs, a BlogTalkRadio show with shows almost every week, thousands of listeners to podcasts produced from the shows, twitter groups, facebook groups, twines, friendfeeds, newsletters, websites, chat groups and much, much more. The Cushing’s community, bonded by the lack of education in the medical community and the necessity or self-education has become a community of all of these things.

Doctors send patients to the boards and the other sites for support and help. They join us on the BlogTalkRadio show. They know us. We know them.

Most of all, lives have been saved because of this. Not one, not two, but countless. And lives have been changed with the right medical help and knowledge. It is hard to quantify such data, although we’d love to try. If anyone has ideas about how to do that, we have a community willing to do it. Several of us with a research background have discussed doing it. Sometimes, though, we aren’t objective enough, I think. Other times, I think we are missing a treasure trove of valuable information.