Infoway has released a reference implementation on SourceForge:
"IRIS (Infoway Reference Implementation Suite) is a demonstration of Electronic Health Record (EHR) interoperability messaging created by Canada Health Infoway. The project demonstrates and proves Patient Registry interoperability messaging using HL7 v3."
This appears to be an otherwise unpublicized reversal of a previous position.
Documentation of the reference implementation.
Open Source, sort of
The code is licensed under the Academic Free License (AFL), which is a SourceForge-approved open source license. Details.
This license is pretty similar to LGPL in that it allows both commercial and noncommercial use, but it reserves ownership (and possible future enforcement of?) patents contained in the source distribution.
Infoway itself is a non-profit organization constituted by Canadian federal and provincial deputy health ministers. It describes itself as a 'strategic investor' and has a budget of $1.1 billion to invest in electronic health care record initiatives ($125 million have been invested already). Partners are public health care institutions (such as hospitals) as well as (unnamed) provate sector investors. Infoway has been running a series of seminars advising the private sector on business opportunities arising from this initiative.
Standards Based Approach
The major strength of this initiative; will ensure interoperability across the system.
Question: how far does Infoway take us down the road to the privatization of health care?
"Infoway is focused on strategic alliances with the private sector. The private sector is key to ensuring that any proposed standards solutions are appropriate and feasible and the effective implementation of any standards-based solution depends on collaboration with the private sector." Link.
The standards group has significant private sector involvement. Link. More.
Private sector information presentation.
There is no suggestion that Canadian citizens own their own data, but there are assertions of privacy. "Respect for privacy is fundamental to this vision."
There is a conflict of interest policy, but with terms so weak ("disciplinary action up to and including termination of his or her employment or other relationship with Infoway.") that conflict of interest is inevitable. The limitation period (ie., the space between being a board member or employee and receiving contracts) is only 90 days, which is effectively useless.
There is also an intellectual property policy, the gist of which is that private agencies obtain and keep IP developed out of this initiative, subject to certain performance conditions ("The Corporation will require the Participants to take effective steps within a reasonable period of time to commercialize, exploit or otherwise bring to the point of practical application, as applicable, any Investment Derived IP"). However, the enforcement is no more than a "recommendation": ("The Corporation shall encourage the publication and disclosure in a timely manner of all Investment Derived IP while respecting applicable law...").
Not So Open...
There is an EHRS "blueprint" available on the website, however, it is necessary to register to view it.
Terms and conditions for this registration (which you must acknowledge having read and agreed to) include: "Upon submission, you irrevocably assign all your moral rights in such submission to Infoway and agree to grant Infoway a royalty-free, perpetual, irrevocable, world-wide non-exclusive licence to use, reproduce, create derivate works from, publish, edit, translate, distribute, perform and display such submission in any manner and form."
The good news is that this project exists, is at least partially open source, and is based on open standards. It has the potential to save billions of dollars in our health care system.
- there is a significant level of private sector involvement, enough to suggest an inextricable linkage and thus significant privatization of the health care records system
- there are few, if any, contraints on conflict of interest, misuse of records, or other breaches of privacy and security
From what I can see Infoway is a fait accompli - other initiatives will have to conform to it or be frozen out. That said, recent events have shown that our governments are in the process of privatizing health care. This is happening despite the wishes of the vast majority of Canadians. Infoway is demonstrating a significant degree of private investment, enough to suggest that the process of privatization extends into health care records. This is something to be concerned about.