Comments on: What I learned about CCR, Part I http://www.tedeytan.com/2008/06/27/1190 e-Health. Patient empowerment. Washington, DC. Thu, 18 Mar 2010 18:02:58 +0000 http://wordpress.org/?v=abc hourly 1 By: ePatientDave http://www.tedeytan.com/2008/06/27/1190/comment-page-1#comment-7085 ePatientDave Fri, 08 May 2009 07:14:13 +0000 http://www.tedeytan.com/2008/06/27/1190#comment-7085 <span class="topsy_trackback_comment"><span class="topsy_twitter_username"><span class="topsy_trackback_content">Interested in health data formats? Meaty @TedEytan June08 post about CCR http://is.gd/cKG6 & update today http://is.gd/xCI1</span></span> Interested in health data formats? Meaty @TedEytan June08 post about CCR http://is.gd/cKG6 & update today http://is.gd/xCI1

]]> By: Ted Eytan http://www.tedeytan.com/2008/06/27/1190/comment-page-1#comment-3895 Ted Eytan Fri, 08 May 2009 01:34:42 +0000 http://www.tedeytan.com/2008/06/27/1190#comment-3895 Gentlepersons, I've pasted the e-mail exchange that followed this conversation in a post of its own, <a href="/?p=3022" rel="nofollow">here</a>. Feel free to add comments/keep the conversation going there. It's a great one, Ted Gentlepersons,

I’ve pasted the e-mail exchange that followed this conversation in a post of its own, here. Feel free to add comments/keep the conversation going there. It’s a great one,

Ted

]]> By: ePatientDave http://www.tedeytan.com/2008/06/27/1190/comment-page-1#comment-7086 ePatientDave Tue, 05 May 2009 12:09:31 +0000 http://www.tedeytan.com/2008/06/27/1190#comment-7086 <span class="topsy_trackback_comment"><span class="topsy_twitter_username"><span class="topsy_trackback_content">CCR might be good spec for PHRs but spec costs $100. How can we free it & see? See comments on @tedeytan http://is.gd/cKG6</span></span> CCR might be good spec for PHRs but spec costs $100. How can we free it & see? See comments on @tedeytan http://is.gd/cKG6

]]> By: e-Patient Dave http://www.tedeytan.com/2008/06/27/1190/comment-page-1#comment-3884 e-Patient Dave Tue, 05 May 2009 12:07:37 +0000 http://www.tedeytan.com/2008/06/27/1190#comment-3884 So, now I'm really wondering: @CarlosRizo and others at Health 2.0 Meets Ix were talking about various useful applications for CCR; I'd really like to assess them, as I'm sure many other e-patients would. Whom do we ping or nag about freeing this up? I understand that ASTM needs to cover its costs but the "T" is for technical, indicating that these are usually industrial docs, not something where the public might have a vital stake. Ideas, anyone? (I'll tweet this.) So, now I’m really wondering: @CarlosRizo and others at Health 2.0 Meets Ix were talking about various useful applications for CCR; I’d really like to assess them, as I’m sure many other e-patients would.

Whom do we ping or nag about freeing this up? I understand that ASTM needs to cover its costs but the “T” is for technical, indicating that these are usually industrial docs, not something where the public might have a vital stake.

Ideas, anyone? (I’ll tweet this.)

]]> By: Ted Eytan http://www.tedeytan.com/2008/06/27/1190/comment-page-1#comment-3878 Ted Eytan Mon, 04 May 2009 16:43:53 +0000 http://www.tedeytan.com/2008/06/27/1190#comment-3878 Sorry Dave, just wanted to make sure the information is in the thread. So noted that you did look ! Ted Sorry Dave, just wanted to make sure the information is in the thread. So noted that you did look ! Ted

]]> By: e-Patient Dave http://www.tedeytan.com/2008/06/27/1190/comment-page-1#comment-3877 e-Patient Dave Mon, 04 May 2009 16:18:40 +0000 http://www.tedeytan.com/2008/06/27/1190#comment-3877 Yes, Doctor. :–) Been there. I know what they're implementing: "Google used the <Function> element to indicate whether the user has specified she is pregnant, or breastfeeding" but as I just said, that gives me no info on what available Function values they <i>didn't</i> implement. Honestly, you think I'd be whining about insufficient info when I didn't look first? :–) Your fan, Dave Yes, Doctor. :–) Been there. I know what they’re implementing: “Google used the <Function> element to indicate whether the user has specified she is pregnant, or breastfeeding” but as I just said, that gives me no info on what available Function values they didn’t implement.

Honestly, you think I’d be whining about insufficient info when I didn’t look first? :–)

Your fan,
Dave

]]> By: Ted Eytan http://www.tedeytan.com/2008/06/27/1190/comment-page-1#comment-3876 Ted Eytan Mon, 04 May 2009 16:06:01 +0000 http://www.tedeytan.com/2008/06/27/1190#comment-3876 Dave, For what it's worth, I recently needed to do a little bit of research on the Google Health API, which is based on CCR, and found that they did a nice job of documenting what they're using, here: http://code.google.com/apis/health/ccrg_reference.html You might start there to get a feel for how it's used, Ted Dave,

For what it’s worth, I recently needed to do a little bit of research on the Google Health API, which is based on CCR, and found that they did a nice job of documenting what they’re using, here:

http://code.google.com/apis/health/ccrg_reference.html

You might start there to get a feel for how it’s used,

Ted

]]> By: e-Patient Dave http://www.tedeytan.com/2008/06/27/1190/comment-page-1#comment-3875 e-Patient Dave Mon, 04 May 2009 15:03:44 +0000 http://www.tedeytan.com/2008/06/27/1190#comment-3875 Yes, I quickly found the ASTM page. Here's a problem, IMO: how are patients supposed to participate in discussing good use of the standard, if it costs $100 to get a copy? I'm open to discussion but methinks the new world of participatory medicine requires open access to the standards that are being discussed ... especially since there's plenty of reason to think that implementation decisions could use some scrutiny. In this case, the patients contributing to Google's discussion can't even tell whether Google has implemented the full Functional Status element or even a part. To whom would we speak to request open access for this schema? Yes, I quickly found the ASTM page. Here’s a problem, IMO: how are patients supposed to participate in discussing good use of the standard, if it costs $100 to get a copy?

I’m open to discussion but methinks the new world of participatory medicine requires open access to the standards that are being discussed … especially since there’s plenty of reason to think that implementation decisions could use some scrutiny.

In this case, the patients contributing to Google’s discussion can’t even tell whether Google has implemented the full Functional Status element or even a part.

To whom would we speak to request open access for this schema?

]]> By: Ted Eytan http://www.tedeytan.com/2008/06/27/1190/comment-page-1#comment-3874 Ted Eytan Mon, 04 May 2009 14:38:38 +0000 http://www.tedeytan.com/2008/06/27/1190#comment-3874 Hi Dave, David Kibbe, MD, responded to your comment to me in e-mail, and I am reposting it here for your review. As always thanks to both David and Steven Waldren for being such great and responsive stewards of the CCR standard. --- The full schema for the CCR standard is available from ASTM International, the Standard Development Organization under whose auspices the CCR standard has been developed and funded. If you go to http://www.ccrstandard.com you'll see in the left hand menu an entry "Get the Standard from ASTM" Click on that and you'll be taken to the ASTM website. The full standard costs $100, but there are no fees for using the CCR standard after accessing the components of the standard. Another way to access the standard is to join ASTM E31, which is $75 per year. The advantage here is that you get to participate in the further development and maintenance of the standard, and vote when the next version comes to ballot. Google Health supports only 6 data objects, or sections, of the CCR standard, and Functional Status is not one of them. Hope this is helpful, and hope you're doing well. Regards, DCK Hi Dave,

David Kibbe, MD, responded to your comment to me in e-mail, and I am reposting it here for your review. As always thanks to both David and Steven Waldren for being such great and responsive stewards of the CCR standard.

—
The full schema for the CCR standard is available from ASTM International, the Standard Development Organization under whose auspices the CCR standard has been developed and funded.

If you go to http://www.ccrstandard.com you’ll see in the left hand menu an entry “Get the Standard from ASTM” Click on that and you’ll be taken to the ASTM website.

The full standard costs $100, but there are no fees for using the CCR standard after accessing the components of the standard. Another way to access the standard is to join ASTM E31, which is $75 per year. The advantage here is that you get to participate in the further development and maintenance of the standard, and vote when the next version comes to ballot.

Google Health supports only 6 data objects, or sections, of the CCR standard, and Functional Status is not one of them.

Hope this is helpful, and hope you’re doing well.

Regards, DCK

]]> By: e-Patient Dave http://www.tedeytan.com/2008/06/27/1190/comment-page-1#comment-3862 e-Patient Dave Sat, 02 May 2009 20:07:58 +0000 http://www.tedeytan.com/2008/06/27/1190#comment-3862 Kind sir, a question has arisen on the Google Health discussion group http://is.gd/wbeG about Google's implementation of Functional Status in the CCR. They only support the child elements for pregnancy and breastfeeding, and I want to know whether there ARE other elements. I've been totally unable to locate the schema anywhere - can you help? Kind sir, a question has arisen on the Google Health discussion group http://is.gd/wbeG about Google’s implementation of Functional Status in the CCR. They only support the child elements for pregnancy and breastfeeding, and I want to know whether there ARE other elements. I’ve been totally unable to locate the schema anywhere – can you help?

]]> By: David C. Kibbe, MD MBA http://www.tedeytan.com/2008/06/27/1190/comment-page-1#comment-1548 David C. Kibbe, MD MBA Fri, 27 Jun 2008 17:33:39 +0000 http://www.tedeytan.com/2008/06/27/1190#comment-1548 Ted: Thanks for the post about the CCR standard. A couple of minor corrections. In you section "What exactly is CCR?" I would say it this way: The CCR standard is two basic things - it is a personal health data set, that is, content about a person such as diagnoses and medications, which resides in a fairly easy to read spreadsheet. An implementation guide, or IG, includes the spreadsheet and explains the "how to" of every element, most of which are optional and may or may not be included in a CCR file produced for an individual. The CCR standard is also an XML "schema," which is programming code that describes precisely how each content element in the CCR should be arranged in XML, eXtensible Markup Language. The schema is a bit of XML technology that connects the CCR standard in a logical way to standards already used by other industries to move data (getting us away from the "health care is different" model). It also makes the content machine-readable. The CCR standard is licensed by ASTM International, a non-profit. ASTM asks that companies who wish to use the CCR in their products or services pay a one time fee of $100 for the standard IG and schema, but after that they are free to use the CCR standard without any royalty or additional fees. Some additional components related to the CCR standard, such as the XSLT that transforms the .xml file to .html , making the content readable in a web browser, are open source licensed under the Apache GNU License. I hope these minor changes make sense! The blog is very accurate otherwise. Ted: Thanks for the post about the CCR standard. A couple of minor corrections. In you section “What exactly is CCR?” I would say it this way:
The CCR standard is two basic things – it is a personal health data set, that is, content about a person such as diagnoses and medications, which resides in a fairly easy to read spreadsheet. An implementation guide, or IG, includes the spreadsheet and explains the “how to” of every element, most of which are optional and may or may not be included in a CCR file produced for an individual. The CCR standard is also an XML “schema,” which is programming code that describes precisely how each content element in the CCR should be arranged in XML, eXtensible Markup Language. The schema is a bit of XML technology that connects the CCR standard in a logical way to standards already used by other industries to move data (getting us away from the “health care is different” model). It also makes the content machine-readable.

The CCR standard is licensed by ASTM International, a non-profit. ASTM asks that companies who wish to use the CCR in their products or services pay a one time fee of $100 for the standard IG and schema, but after that they are free to use the CCR standard without any royalty or additional fees. Some additional components related to the CCR standard, such as the XSLT that transforms the .xml file to .html , making the content readable in a web browser, are open source licensed under the Apache GNU License.

I hope these minor changes make sense! The blog is very accurate otherwise.

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