There are several really strong non-governmental initiatives underway for improving and implementing Portable Health Records. They vary in scope and quality, but all are doing good work. Included below is information on a few of the most major projects.
American Health Informatics Association (http://www.myphr.com/your_record/index.asp) This group has taken a leading role in developing standards for both commercial and freeware Personal Health Records, both online and portable. The webpage above contains some excellent information in lay terms explaining why certain information is essential for such a record, who will use it, and how to keep it secure.
EHealth Initiatives Group (http://www.ehealthinitiative.org/) A national organization focused on improving information systems within the healthcare field, with particular focus on policy. A subsection focuses on Electronic Medical Records and Portable Health Records. Involves major players from healthcare networks, academic centers, and government agencies. Has some great conferences, unfortunately, they charge upwards of a thousand dollars to attend one, which may have the result of excluding parties with valuable input.
The Markle Foundation (http://www.markle.org/) This is a privately funded foundation with the general mission of improving society through the implementation of emerging technologies. Their "EHealth" division is doing excellent work on Personal Health Records, pushing for insurers, hospitals, pharmacies, and labs to cooperate in developing a system where any American with a computer could download their own information (see whitepaper of December 2006 and responses of February and March 2007.)
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