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Why we formed Patient Privacy Rights:
➢ Today the greatest use of our health records is not to help us, but to hurt us.
➢ Federal law allows access to our most intimate information without our consent and without penalty by over 4 million health-related businesses.
➢ Americans overwhelmingly want the right to health privacy; they don't know it was eliminated.
➢ Without health privacy, electronic health systems will create whole new classes of people who are unemployable, uninsurable and dependent on government, simply because of an illness or genetic risk of disease.
We believe patients own their personal health information and the physician's oath to keep patients' information inviolably secret is fundamental to trust in the healthcare system. We believe our personal health information should only be used to improve health. We believe electronic health records can help improve efficiency, lead to research breakthroughs, and lower the costs of healthcare, but only if informed consent is given first for all uses. We believe when patients do not trust doctors or the health system to protect their privacy, they withhold information, avoid care and become sicker. We believe adoption and utilization of electronic health records will fail without the public's trust.
As we enter the age of electronic health records, our mission is to ensure that Americans control all access to their health records. Your personal health information is your private property. You should have the right to decide who can see and use your most intimate data and who cannot.
• We envision a nation of educated consumers who can advocate successfully for their right to health privacy.
• We envision a strong national policy recognizing our right to health privacy with safeguards to ensure and protect that right in federal statute.
• We envision a successful, progressive health information technology industry that ensures that consumer control of personal health information is the cornerstone of product design.
# 1: Educate the general public about the loss of health privacy, the secondary uses of their personal health information, and ways to protect themselves and their loved ones.
#3: Partner with the private sector to improve health IT products, advance our privacy principles and ensure consumers have access to pro-privacy systems and choices.
#4: Ensure Patient Privacy Rights becomes a sustainable, well-known and regarded organization nationwide.
- Katherine Johnson
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