People keep asking where they can find a community for their disease. I often don’t have an answer, so it’s time to get to work, collecting information so patients in trouble can find what they need.
As a start, I’ve added a new page to this website: ePatientDave.com/communities. It’s a very preliminary, very partial list of places to go if you want to find a patient community for your disease.
So far it only includes two resources: ACOR and Webicina. (For details, see the page.)
I don’t intend for this page to be the world’s best list, but we need such a list SOMEwhere, and this will at least be a first start, eager to be replaced by something better. (Perhaps it will be an enhanced Webicina list; who knows.)
Thanks to Non-Hodgkins Lymphoma patient Virgil Miller, whose comment on last week’s post led me to finally do this. Virgil, you’ll find that ACOR has a community for your disease.
What a database of communities should be, ultimately:
We should have a real, robust, searchable database of patient communities, with information such as:
- Disease (so you can enter a disease name and find all known communities)
- Type: web forum, blog, website, etc.
- Whether it’s accessible by email
- Number of members
It should list communities all kinds of conditions, not just cancer: diabetes, rheumatoid arthritis, everything.
Once it exists, people will develop mobile apps, so you can get at the database more easily. Etc etc. (Did I mention it should be open source and wiki-editable?)
PLEASE DON’T SUBMIT YOUR SUGGESTIONS HERE. PLEASE SUBMIT THEM ON THE PAGE ITSELF. :–)
Daniel Hooker says
This page at Dose of Digital does track of patient communities. http://www.doseofdigital.com/healthcare-pharma-social-media-wiki/
Though it looks to be a thorough list, it isn’t searchable (in a database sense) and doesn’t break down by supported disease/condition. What I do like about the list is that it identifies any controlling pharmaceutical interest in the community–something that often isn’t obvious from the sites themselves.
It would be great if we could figure out solution for getting what we need out of a database like this one. I do wonder if perhaps we could crowdsource it by contributing to Wikipedia or another public tool? I’d love to see something like this take off.
Andrew Spong says
I curate a list of patient communities on StumbleUpon:
Jackie Fox says
Great idea! I’ll see what I can share.