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‘Declaring’ health data rights
Posted on Thu, Jun 25, 2009 - 11:01 amGoogle Health on Tuesday endorsed an industry-wide Declaration of Health Data Rights, an initiative launched by HealthDataRights.org aimed at improving patients’ access to their health data. While the move makes for good headlines, it probably won’t amount to much beyond keeping PHRs in the news as the Obama administration goes all out trying to sell the need for a new health care system.
Anyone who knows me can attest that I’m a huge advocate for patients rights—and access, security and privacy top the list—but this endorsement, while symbolically gratifying, doesn’t add up to much beyond a headline grab.
According to an article in Healthcare IT News, the Declaration of Health Data Rights reads as follows:
“In an era when technology allows personal health information to be more easily stored, updated, accessed and exchanged, the following rights should be self-evident and inalienable. We the people:
• Have the right to our own health data;
• Have the right to know the source of each health data element;
• Have the right to take possession of a complete copy of our individual health data, without delay, at minimal or no cost; If data exist in computable form, they must be made available in that form; and
• Have the right to share our health data with others as we see fit."
At a time when, in my opinion, not nearly enough is being done to safeguard the privacy and security of patient data, it’s nice to know a PHR vendor is doing its bit to speed widespread access to this data.
Let me know when an industry-wide declaration becomes legally binding.
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