2008-10-29

CRHIO - Clinical Research Health Information Exchange

I had a great opportunity today and yesterday to observe many CDISC Intererchange attendees experiencing the power of Remote Form for Data Capture (RFD). At the CDISC conference several EMR vendors (Cerner, Allscripts and Greenway) and an eClinical vendor (Outcomes) were demonstrating the paradigm shifting RFD profile. In the demonstrations (sandbox environments of real world projects employeeing RFD - Aster from Pfizer [AE], a protocol from Lilly and a registry for Pampe Dx with Genzyme) a diverse set of scenarios were put through the paces by hundreds of very interested conference goers.

The opportunity wasn't limited to the power of the functionality being displayed but the questions and semi-formed issues that were raised by the highly engaged attendees. Clearly, RFD is the initial steps in the right direction and a critical mass of understanding was one of the results of the demonstrations. In the near future, I am sure we will see a lot of feedback regarding the considerations to be made regarding the utilization of RFD and I am happy to report that CIT4CRHC is embarking on a project to draft a document encapsulating these next steps.

Coincidentally, I was rereading the AHIC document of Defining Key Health Informtion Technology Terms. Within this document (see our web-site for a link under our Reading List\Highly Recommended) a definition for a Health Information Organization is concretely defined for the context of the NHIN and HIT in general.

As many participants are probably familiar with the modified term RHIO (regional health information exchange) it occured to me that a similar modified term that we may eventually encounter is "CRHIO" for Clinical Research Health Information Organization. As a HIO is defined as 'An organization that oversees and governs the exchange of health-related information among organizations according to nationally recognized standards.' A RHIO is further clarified as being, first foremost, a governance entity whose purpose is to facilitate the accessibility and exchange of health-related information on individuals within a contiguous geographic area for the benefit of the community in that area.

With these two concepts intermingaling in my mind it occured to me that if there emerges a need for governance to address some of the issues being raised during the RFD demos and that the population of interest (patients in rarer diseases especially) for many clinical research considerations are without geographical boundaries there may emerge a value generating function to be orchestrate by this newly coined concept of a CRHIO.

I am sure that the idea of a modified-HIO concept has been evaluated in the context of other domains such as bio-surveilance with recognition that a bio-event may well overlap multiple regions. I would be interested to hear the thoughts of CIT4CRHC participants regarding the utility of a Trusted Third Party\Governance concept. Please postany information or ideas that may be relevant to this concept. What do we need to be considering here. Is it a trap or an enabling concept? How will this help the community to address the concerns around privacy et al? How would you accredit a CRHIO?

It may be that I am chasing down the wrong rabit hole but it would be interesting to discuss this topic with all of you.

2008-10-17

Thank you Aaron

Thank you Aaron for developing the website and the blog. I'm looking forward to some excellent information exchange.

Off to a great start!

Blog is a great idea and website looks great. Thanks to Aaron for the procurement of both. I look forward to hearing from everyone. -Regards, Melissa

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