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November 09, 2007

Comments

Hamish MacDonald

Dr. Kibbe,

Small and personalized data sets are definitely important for the progression of Health 2.0, for the reasons you outline in your blog.
Please continue commenting.

Cheers,
Hamish MacDonald

Stef Verlinden, MD

Dear David,

I completely agree with your observations/suggestions. As far as standards for 'semantic/ level 4' interoperability go, I suggest you to look further than the CCR standard alone.
A standard for true semantic/ level 4 interoperability, that can be used in systems that are both scalable and maintainable, which is also broadly used, is quite a challenge. Despite many standardization efforts almost nobody has addressed let alone solved this. Most efforts choose for a partial/ local solution. That alone will never work since broad acceptance of a standard that delivers is key semantic/ level 4 interoperability.
Since almost 20 year a small but dedicated group and nowadays fast expanding group of people have been working on a broadly usable open standard for EHR and PHR systems. Since they realized that broad acceptance is key, they not only developed a standard but also brought this up for international standardization. These efforts have resulted in a double CEN and ISO norm (CEN/ISO 13606). Therefore it is now de facto the world wide standard for semantic/level 4 semantic interoperability, scalability and maintainability. More information can be found on www.openehr.org.
We're developing a PHR system based on this standard. In my opinion conformation to the CEN/ISO 13606 standard is crucial to deliver true patient/citizen empowerment (see also my blog at vivici.wordpress.com)

David C. Kibbe, MD MBA

Dear Stef and Hamish: Thanks for your positive comments. I'm aware of the CEN/ISO 13606 standard, but would like to discuss it with you, Stef. My email is kibbedavid@mac.com , and we could take the discussion off blog. Perhaps there is an opportunity to get the ASTM CCR standard and CEN/ISO 13606 communities talking together.

One thing I see of value about the CCR standard for the Health2.0 community is that it is not as highly constrained, and is open for input and changes from this community, based on market-driven needs, in a fast emerging sector of this industry. It is not over-designed and remains quite flexible, in other words. I know that to engineers this is sometimes anathema, but personally I like the idea of invention as collaboration, rather than dictate from a standards body.

Kind regards, DCK

jd

David,

I'd really like to hear your insights on the issue of uniquely identifying patients. Whether we have a sparse information model or a more complete/complex one, none of this is going to work unless there is an automated way for data from multiple systems to converge into one record. There is now an NPI for physicians, but what about patients? It seems something like a social security number is out of the question, so what are we going to do in it's absence?

Of all the large problems we have ahead in developing computable data exchanges (privacy, data ownership, business models for data exchange, operational data standards, etc.), it seems that this issue ranks right up there. Any thoughts on how we can resolve it?

gjudd

Here's hoping Dr. Kibbe's 'contrarian' observations on the value of beginning with simple health care info interchange win broad acceptance quickly.

I'd urge him & others to consider that even his insistence that "To be truly user-friendly, however, the applications that wish to offer these kinds of health informational services do need a small and highly structured data set " may overstate the case.

Need "structured data set" be modified with "highly"? I'm not even sure how a "highly" structured set would differ from a merely structured one; or how extensive the structure he alludes to must be, to be useful to senders and/or receivers of information.

More structured than my email account? If so, how much more?

Looking forward to learning....

Steve Beller, PhD

David,

I understand the value of a sparse info model and minimal data set, but I contend that having a lifetime of comprehensive, detailed clinical data about signs, symptoms, risk factors, treatment particulars, and outcomes on every patient is necessary if we truly want to change the current healthcare system in profound ways, as I discuss at this link.

And you asked an excellent question: "How do we help our customers/users get their basic health information; how do they upload it to our applications; and how do we store it for them in such a way that it can be re-used, re-connected, and re-purposed?"

An elegant solution is a decentralized (peer-to-peer) system that sends copious amounts of health-related data in encrypted flat files (e.g., CSV format) that use formatting templates to present the data in customized dynamic (interactive) reports. This low-cost, highly efficient solution works in conjunction with any data stores. And it is compatible with XML, although it is much less "verbose" and consumes much lower resources (i.e., much less processing power and network bandwidth). Furthermore, the data in the flat file are "live," which means the data are readily available for aggregation and computation (e.g., to determine significant trends and associations), and can be repurposed and used by other applications without complex transformation.

I discuss this radical innovation at this link. I welcome any feedback.

Steve Beller, PhD
Wellness Wiki
Curing Healthcare Blog.

Maude

i am not particullary stupid on an it-level. not very advanced or intelligent either. just a simple doctor who surfs on the internet, try to use scientific sources (like cochrane, embase, medline) to improve my clinical work , i have been following this health 2.0 through bmj, and several weblogs, in short rather representative for a big bulck of gp's in western europe. and i can not understand a f*ck what this 2.0 is about. Wake me up, when somebody can explain health 2.0, in 20 lines plain english. oh yes, and something else: if the big pharmaceutical companies are involved, i will not trust it and hence not use it. If even intelligent people like former editors Marcia Angell (NEJM) and Richard Smith (BMJ) admit how they can be misguided, how the more us, simple gp's.

Paul Biondich

While not letting perfect get in the way of pretty good, I'd contend that once information is stored in a coarse way, it's rather difficult to codify or structure later.

There are consequences to storing data coarsely. Inability to drive decision support, inability to derive measures of quality, and complexities in aggregating data in a flowsheet for easy viewing by clinicians.

The topic of this article seems somewhat misplaced, in that I'd contend that it's not either coarse or sturctured... it's actually a nice synergy between coded and free text, based upon understanding how you'll ultimately use those data.

Martin Jensen

Dr. K is onto something here. If we're really going to let consumers drive their own healthcare, we shouldn't be suprised that they'll want to go somewhere. They're not going to want to manage a bunch of records -- even the really sick ones. I pulled some of this analysis together in reference to the dominant PHR paradigms on my blog at http://blog.hittransition.com/2007/11/phr-as-a-verb-a.html

Marty

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