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: [Read more…]

In How Patient-Provider Engagement Can Transform Patient Safety I proposed a shared care plan, which the patient and family would be able to read. I just learned that Abington Memorial Hospital, outside Philadelphia, already offers a daily one. Click the image to see a PDF.

They have many anecdotes of medical errors that were avoided because the patient and family could see the plan, point out allergies, note things that didn’t get done during the day, etc.

How did they do this? Custom programming? Yes and no: it’s a report they created on their Eclipsys medical record system.

Wonderful! This is one example of the great potential of health IT, to leverage information for better care. Let patients help.

Hospitals, can you do the same? The people at Abington are happy to share.

Read Abington’s press release about the “CARE Plan” (Communication, Access to info, Resources & Education), for which they won a 2008 Magnet Prize.