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Director, OpenShift Strategy at Red Hat. Founder of Rishidot Research, a research community focused on services world. His focus is on Platform Services, Infrastructure and the role of Open Source in the services era. Krish has been writing @ CloudAve from its inception and had also been part of GigaOm Pro Analyst Group. The opinions expressed here are his own and are neither representative of his employer, Red Hat, nor CloudAve, nor its sponsors.

2 responses to “Health Care Data: Know Your Rights”

  1. dpeelmd

    “Today, we are seeing the first baby steps taken to ensure that the ownership of health data stays with the patients rather than health care provider and/or insurance company.”

    Not by HealthDataRights.

    The principles HealthDataRights proposes DO NOT lead to patient ownership of data. The “rights” they promote are very deceptively worded. But if you go to the FAQs page on their website they actually state clearly that “NO”—they do not support patients’ longstanding legal and ethical “exclusive rights” to their personal data.

    Their entire “rights” message is false and misleading: the stimulus bill guarantees that we have the right to electronic copies of all our health data. The right to copies of personal health data is NOT threatened at all, it was just affirmed in federal law.

    Clues that HealthDataRights is NOT a real consumer rights organization but a fake, industry supported shill:
    1) Google, the health data mining industry, and the for-profit research industry support these “rights”. Since when are data miners willing to cede control over any of the personal data they steal or collect about us?
    2) there are no members and no board listed on the website
    3) they claim to have no funding, except individuals that are not named
    4) the “rights” are cleverly designed using weasel words to sound very much like what Americans want but DO NOT state unequivocally that Americans should either own their data or have the right to control all uses of their health data.

    To fight for the rights you REALLY want, you will have to join a real consumer organization, that actually represents YOU.


    Deborah C. Peel, MD
    Founder and Chair, Patient Privacy Rights