PatientsLikeMe goes big, doesn’t stay home

PatientsLikeMe has, since before we first featured them at Health 2.0 in 2007, been the patient online community continually pushing the boundaries for patients with rare diseases. It started with MS, ALS and Parkinson’s and slowly moved towards mental health. And along the way PLM developed some of the most unique reporting tools both for patients and for third party (read: pharma) researchers. However, it always stayed away from the really big disease categories, like diabetes. No longer. As of today anyone can start a community for any condition at PatientsLikeMe. As of right now there are 182 patients with type 2 diabetes. Of course this is minuscule compared to Diabetic Connect or dLife, but given PLM’s reputation and press coverage, the gloves are well off in the patient community contest.

The evolution of THCB

It’s been a couple of months since we moved THCB to Wordpress and added the channels you see at the top. As you may have noticed there have been some teething troubles, and for all its power Wordpress does have some problems. We’re still working on fixing the right hand columns. However, we’re able to do some things that we couldn’t beforeâ€"including this little mini-blog microbrew that allows me (Matthew) to write little pieces that I like without having to write enough for a whole post. Wordpress also does much better on spam trapping;I literally just went through 1,000 spam comments and only 3 were false positives. If youve had problems posting comments try taking OUT any links (that tends to trigger the spam filter).

But overall you can expect more and better from THCB in the coming weeks…and we’ll be keeping you updated.

The Kaisingers link up

A while ago at an IOM meeting I mis-spoke and called Geisinger, “Kaisinger” and it kinda sounded right. Well now those two Epic users with another similar Epic user (Group Health) have teamed up with Mayo (home grown IT) and InterMountain (3M + homegrown + GE) to share patient data.  Now it hasn’t happened yet â€" this is the announcement of what is to come (although KP is inter-operating with the VA in San Diego). But they’re going to use NHIN standards. My understanding is that they’re going to start with moving data using CCD (a subset of the records) and then move to access full patient data via common medical identifiers. Of course while this is great news, the chances of a typical California Kaiser patient showing up in rural Pennsylvania isn’t that high. But if they can do it across the country, why can’t they and others do it across the street? In other words resolve what Jonathan Bush calls the Paper Aeroplane method of interoperability. After all that type of random showing upâ€"even for Kaiser patients in a Sutter run ERâ€"is a big deal. Let’s hope this announcement is a big spur, and allows others to join.