May 05, 2013 - 8:05 pm
There is a new web-site for cancer patients and caregivers called www.smartpatients.com.
It is migrating users from ACOR.org - Association of Online Cancer Resources and so far is mostly populated with kidney cancer patients and parents of children with pediatric cancers. However site owners have larger plans for ACOR Jr and invite patients with other cancers and their caregivers to join.
I spent 5 days on this board, poked and tested everything and de-activated my account, when there was nothing else left to see.
Here are my impressions so far. I recommend that you join and form your own opinion.
Site users are constantly referred to as "smart patients". The term is designed to compliment and encourage users who educate themselves, who get involved in pharma R&D, who challenge doctors and insurance, as well as to imply their intellectual superiority to other cancer discussion boards' members. From overuse "smart patients" rhetoric becomes a little patronizing and annoying, like parents applauding their bright toddler who learnt to tie her shoelaces.
Site is not broken down by cancer board. Instead it uses "tag" system, where people with different cancer interests can follow different tags. Which means that you get more interaction with other patients and more relevant information about common drugs, side effects, research, etc. Takes a few minutes to understand and get used to how it works, but not overly complicated.
I got the feeling that site owners are steering "smart patients" with different cancers into "crossing disease boundaries" and "cross-pollinating", but users are more comfortable inside their own silo. Many users are asking how to filter out content not related to their own cancer.
Site is private and secure. Unlike CSN their conversations can't be seen on Google and other search engines.
There is no spam, because every new user's first post is moderated.
There are options to receive an email with every post update (quickly fills up your inbox) or a periodic digest or to turn emails off all together.
Site has a link to clinical trials search and a neat way to save and comment on trials.
There is virtually no content devoted to gynecological cancers. It's up to the new users to populate it with information.
The site does not have user-to-user messaging or a chatroom yet; formatting is very minimal and does not allow upload of files / pictures / avatars.
Like any start-up it's work in progress and still has glitches. With users' feedback they are being quickly fixed.
People there are very nice and responsive. Especially Robin M, the administrator, Kevin L, the programmer and 2 owners: Gilles F and Roni Z.