One reason why a person might want to be in control of their health record.
theDataMap™ is an online portal for documenting flows of personal data.
When you interact with an organization, you often leave behind personal information. The receiving organization may then share your personal information with other organizations without your explicit knowledge. This hidden data can also cause you harm by making personal data available to third parties without your knowledge, while at the same time, it can make it difficult for third-parties with a legitimate interest in your data to obtain it in ways that benefit you and/or society.
http://thedatamap.org/
When you interact with an organization, you often leave behind personal information. The receiving organization may then share your personal information with other organizations without your explicit knowledge. This hidden data can also cause you harm by making personal data available to third parties without your knowledge, while at the same time, it can make it difficult for third-parties with a legitimate interest in your data to obtain it in ways that benefit you and/or society.
http://thedatamap.org/
Other PHRs (Other than HealthVault, and now 1Up)
The messaging option, www.ccme.com, is secure, but it does not look like a Direct address. So I'm unclear how it would work in the new Direct-based EMR MU2 world. Will have to skip this one.
Tried WebMDHealth. Was offered the site through Independence Blue Cross - IBX. Requires manual entry of data, even though it's connected to my insurance. No Direct address. Limited messaging. No reason for me to switch.
Would be interested in trying Dossia. Integrated open source software platform. OpenID, APIs, published XML schemas, OAuth. Looks like the consortium is promoting through employers. Would prefer to try it myself...