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The ATHNdataset: Why should I opt in?

The ATHNdataset: Why should I opt in?. ATHNdataset: A Community Resource. Brings together standardized demographic and clinical data into one national dataset Primary blood disorder - Family history Inhibitor status - Treatments Routine care - Lab test results

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The ATHNdataset: Why should I opt in?

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  1. The ATHNdataset: Why should I opt in?

  2. ATHNdataset: A Community Resource • Brings together standardized demographic and clinical data into one national dataset • Primary blood disorder - Family history • Inhibitor status - Treatments • Routine care - Lab test results • Types of bleeds/infusions - Allergies • Is a “Limited Data Set” as defined by Privacy Rule • Stripped of 16 specified direct identifiers • Used for public health, research or health care operations • Disclosure covered by data use agreements between ATHN, HTCs and researchers

  3. ATHNdataset is Growing Patient authorizations as of May 11, 2012 Patients choose to “opt in” by signing a patient authorization - 10,003 patients are in! No special lab tests or clinic visits Patient identity is protected 10,003

  4. Patient Authorization Performance

  5. What’s not in the ATHNdataset? • Data of patients who did not sign the authorization • 16 identifiers excluded from a limited data set (HIPAA)

  6. Why opt in? The Power is in the Numbers – A Large Pool of Data is Needed • Many critical questions need answers • Scientific, public health, policy • ATHNdataset supports research • Also supports delivery of care, public health reporting, outcomes assessment and advocacy • Same data enables HTC to create your ATHNready Personal Health Report for emergency preparedness

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