A sampling of the thrust of some of the comments are;
AAFP We need strong integration of the Direct Project standards with certified electronic health record systems and a well developed trust framework.
AHA ONC should focus on establishing a governance framework, but should not formulate regulations on "conditions of trusted exchange" (CTEs)
CCHIT NwHIN governance by a public-private entity would be a more effective approach in establishing trust, gaining wide adoption, and allowing for multi-stakeholder representation.
eHealth Initiative Heavy regulation under a national governance structure should be avoided.
HIMSS EHRA Initial focus should be on developing a governance mechanism, rather than specifying CTEs, which should be created by a public-private governing body.
If you saw Dixie Baker's excellent presentation to the HIT Standards Committee you will see that the NwHIN Power Team had some similar concerns. One thing that was very wise of the ONC was using the RFI process (which I thought would be an Advance Notice of Proposed Rulemaking) which allows for broad stakeholder input and the ability for greater flexibility in the rulemaking process. The ONC now has an opportunity to craft a much better proposed rule in collaboration with the exchange community.
Brian,
ReplyDeleteThank you for trying to summarize this important initiative but you've missed the patient perspective. Health Information Exchanges and the NwHIN have consistently been a day late and a dollar short. Direct was the first practical innovations but, as we see with TN HIE, Direct doesn't really need an HIE and it mostly avoids new issues of governance because the participants already have relationships with the patient.
From the patient perspective, access to one's own most personal data is a civil rights issue. The CTE approach of the NwHIN RFI is not as flawed as the provider organizations would have us believe. A discussion about CTEs promises to move the conversation to a patient perspective and finally lead to a NwHIN that allows transparency and trust to displace the feudal and paternalistic system in place today.
I applaud the RFI perspective and hope ONC does not cave on the CTE model for defining a patient's rights to control our private health data.
Adrian
Adrian,
DeleteI agree that the patient voice seemed missing from much of the conversation on this RFI. The only patient organization that submitted comments of which I am aware is the National Patient Advocate Foundation (see their submitted comments here: http://www.npaf.org/files/NPAF%20Comment%20Letter%20on%20Nationwide%20Health%20Information%20Network%20Conditions%20for%20Trusted%20Exchange.pdf
)
Do you know of other patient organizations which submitted comments?
~Brian