I have zero inside knowledge of what has gone on at the AHIC and its various committees, but given the manpower involved the results seem meager. The spending regarding “privatization” studies by Booz Allen Hamilton and some other company and the grant of $13 million to Brookings and LMI for “AHIC 2.0″ are a complete waste. I looked at the Booz Allen presentation document. I believe $500,000 was paid for that. The analysis is something that you or I could do in a week or two without any prior knowledge for considerably less than $500,000. Nothing wrong with the presentation and analysis however.

I realize this is either is “miniscule potatoes” relative to other wastes of tax-payer funds, but to see it in action is galling.

From the outside regarding Dossia, I still cannot figure out its strategy and goal. Why the company would concentrate on aggregating claims-based data given the its stated goal has to do with clinical data makes no sense. Also evidently the entity that Dossia contracted with – a non-profit “institute” in Portland OR – was trying to create a PHR from scratch from what I read a while back.

From the brief flurry of news at the time Dossia and that institute parted company the institute apparently was not making much progress, although I did not follow the details. A link regarding the current arrangement is this which states that Dossia will use Invido which is a FOSS product, apparently squarely aimed at clinical data:

“On September 17th, 2007, the Children’s Hospital Informatics Program and the Dossia Consortium announced that they would be partnering to make the Indivo PCHR the core of the anticipated Dossia Personally Controlled Health Record system. Dossia will provide resources to extend the core Indivo functionality and server architecture, which will remain open source and freely available. CHIP will also serve as an industry adviser to Dossia as the consortium pursues development of a national PCHR ecosystem.

And yes, many AHIC members seem to represent one organization or another, often working at cross-purposes to one another. It’s unfortunate.

Medem has been around awhile, but so has CapMed and for that matter FollowMe. All provide a different value proposition t the end consumer. I am not as big a fan of Medem as you are and believe there are now other solutions in the market that do the same thing and more. And no, it is not surprising that Medem is not associated with Dossia as Dossia is really focusing on claims data right now and the PHR systems that can readily handle such, something that is not exactly a core competency of Medem’s.

Glad to hear that Secretary Leavitt seemed to take the presentations seriously. The composition as well as existence of the AHIC seem to be that of many “advisory” committees – not advisory in a good way, but there to protect the vested interests in the industry that live off of tax-payer funding.

I agree that Google’s absence is surprising. Also the absence of Medem whose iHealthRecord predates many PHRs and is a good product that from my perspective Medem has failed to exploit in many opportunities that arise out there from offering linkage to an EMR system (readily doable through the use of web services) to collaborating with the Dossia project at several point when the company had a chance.

Yes, there is a distinct difference between those managing health and those managing a disease and it is the latter that are actually adopting and using these systems. That being said, the vast majority of solutions for PHI mgmt, whether for wellness or disease mgm are as I describe them in slide number 4 and they really do not deserve more “green.”

PatientsLikeMe (PLM) is an absolutely brilliant concept and extremely well-executed. They are also not the norm, but an outlier (in a good way). As they are based here in Cambridge, I have had the pleasure to meet with them at their offices. Note that when speaking with the Heywood brothers, they both adamantly deny that PLM is a PHR or PHI platform. During the discussion period at the AHIC mtg, I did make reference to PLM as a unique, alternative model and an example of the consumer’s willingness to forgo some privacy as long as they believe it is for the better good and they receive value far greater than the risk. Also important to note that PLM is very transparent in stating what they intend to do with the data provided.

And isn’t that the bottom line? It’s not so much an issue of privacy, but more an issue of how will the data be used and what value will I get by putting my PHI into your system?

All PHR vendors and PHR sponsors need to articulate that message to the market. Unfortunately, few do so today.

One note on your slide #4 . As a consumer , affected by Parkinson , I suggest you make a distinction between consumers 4a ”managing health” and those 4b ”managing disease” . Your assessment regarding the relevance and or rating ”attributes” only applies to the healthy lot – from my own experience with the PatientsLikeMe community and value add , albeit on a very specific disease , … I would put in a lot more greens ! Disease specific consumer websites represent by its very nature a tiny percentage of the consumer market – but they sure act like the pioneers.

PS have a professional interest in PHI as well…