Health Data Rights Movement – Support the Federal Laws That Allow Access for Patients
Posted Jun 23 2009 5:20pm
You will find me on the list too. There are many companies such as Microsoft, Google, Navigenics, Faster Cures and more on the list. Why is this so important? From the article below:
“When patients get their records -- especially in computerized format -- they can use the information to improve their health”
I keep hoping we get some role models. So far I have only seen 2 on the internet and that is Dr. Halamka with his posts which are very informative on his blog and e-PatientDave who was kind enough to evaluate Google Health with his hospital records. Dr. Halamka is also the CIO of Beth Israel Deaconess Hospital who worked out solutions for accuracy too, which is important to note. You don’t get any more transparent than Dr. Halamka who posted all 77 pages of his record on his blog to serve as an example as well as a Continuity of Care document, not to mention he was also one of the first 10 individuals to have his entire genome sequenced and that is also on the web.
There’s knowledge in those documents and with a PHR to hold the information and the we could all have the same to learn from and share with other healthcare individuals sharing in the responsibility for our care, thus I am in support of the effort. BD
WASHINGTON -- More than 30 bloggers from the medical, technology and patient advocacy worlds are rallying to support patients' right to obtain copies of their computerized health records from their doctors in the electronic format. The Declaration of Health Data Rights -- arriving just in time for Independence Day -- says that patients should have the right to obtain "a complete copy of their individual health data, without delay, at minimal or no cost," in computerized form, if it exists. It also says the sources for all the data should be clear, and patients should be able to share their information as they choose. Information about the effort and posts from participating bloggers are at www.healthdatarights.org.
One of the two dozen or so bloggers participating in the rally is Dave deBronkart, a Nashua, N.H., kidney cancer survivor who discovered this spring that the information his hospital, Beth Israel Deaconness Medical Center, exported to a Google Health personal health record was riddled with inaccuracies and omissions. After the Globe ran a story about deBronkart's records, the hospital announced it would take steps to make the data more complete and accurate. "The first question is, 'Whose data is it anyway?'" said deBronkart (check out his blog ). "Whose life is affected by the quality of this data? .... To me, as that Declaration says, this is an inalienable right."