Rather than a step-function or ‘graduation’, we see a a continuum of participation. At one end are people who start by reading about what others are going through. They may begin on the web, and then sign up to receive email updates. Over time, some people become more engaged, asking questions and responding to others. A subset of those people then go on to create a profile, sharing information about themselves. A number of our members have asked for even more detailed ways to share personal information, creating a deep personal profile and comparing their own specific medical results with others. We’re building those features right now.

Key to the process, from everything we’ve learned, is understanding that people change over time, and their initial reaction to diagnosis (this applies to caregivers just as much as patients) evolves. There are a couple crucial elements to helping people through the stages: first, ensuring they are safe, and privacy is a large part of that. Second, insisting they are able to control the use of their personal information and their role in the community; and third, providing moderators and support to help people navigate the new environment. The average age of our members is 55, and we know that this is the first social network many of them have experienced.

So, that’s a rather long answer, but i just want to convey that there’s a lifecycle to member participation, as these online spaces become a serious part of people’s lives and they make very real friends and develop deep trust-based relationships.

Thanks for the post, and most importantly for your work! One of the things I am most thankful for in my training was that I happened to go to a medical school where Andrew Weil, MD was on faculty, and he spent time teaching us about the things that allopathic physicians (that’s us) DIDN’T treat well at all. I remember his quote, “In 20 years we will look back at what we did to cancer patients and be aghast.” He reminded us to carry ourselves with humility and keep our minds open to different ways of healing.

There wasn’t an ACOR around then, but if it was, surely we would have been drawn to it as a complement to everything we would doing to help society.

It is wonderful that people can find people just like them, regardless of the issue. Rare or common, the need is no less important. A country doctor in 1967 was observed to do this (from “A Fortunate Man“)

“.he is acknowledged as a good doctor because he meets the deep but unformulated expectation of the sick for a sense of fraternity…”

Now, luckily, this doesn’t have to be in the hands of physicians, thanks to you and people like you. Let’s add this to the curriculum, then – a course about the thousands and hundreds of thousands of people who will help you be a better doctor when you graduate…

May I ask your opinion about the use of a Web-based forum vs. the use of other community apps? It seems that this group might benefit from the data tracking functionality available on a site like PatientsLikeMe. But I also see some discussion of being “new to this” and therefore they may feel most comfortable with a threaded discussion. If so, do you think some people might “graduate” to a different application once they get over the diagnosis and discussion phase?

http://www.inspire.com/groups/rare-disease/discussion/isaacs-syndrome/

There is nothing more sincere than the search for a diagnosis, and for treatment that works. If anyone has a doubt about the ability of patients and caregivers to help one another and connect through e-mail and the web, they should have a look. Those with rare diseases become their own experts. They gain extensive, valuable information. Unfortunately, on the Long Tail of disease, their searches are often lonely.

Thank you!
– Marc

Presuming we update e-Patients: How they can help us heal healthcare, I think this article should be the heart of a new chapter titled “It is not unusual to have a rare disease.” That’s such an eye-opener.

(For those who don’t know, I’m a beneficiary of ACOR’s kidney cancer [RCC] list, and the wisdom that’s accumulated there. What Gilles says is real.)

No longer isolated, there is a sense of community…acceptance….and lots of love.

Since I know a bit about your story, I can provide people a bit of context, but please correct/add to it. In a nutshell: your wife was diagnosed with breast cancer, you were both dissatisfied with the doctor’s treatment plan, you went online to find out more information, you found online communities that provided valuable help but who were not archiving their conversations, you created ACOR.org to do so.

You have written about the importance of simple technology like email listserves and the “national treasure” that is PubMed. What are the other tools and developments that have proved to be indispensable to the medical communities you have fostered and observed? What are your “desert island” e-patient resources? (That’s a question for anyone, btw, not just Gilles — if you had a serious diagnosis, what could you not live without in your fight against it?)