1. 1 The ATHNdataset: Why should I opt in?

2. 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. 3 ATHNdataset is Growing Patient authorizations as of May 11, 2012 10,003 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

4. 4 Patient Authorization Performance

5. 5 What’s not in the ATHNdataset? Identifiers NOT inthe ATHNdataset, whichis a limited data set NameSocial security #Certificate/license # Postal addressMedical records #Vehicle ID/serial# Telephone #Health plan beneficiary #Device ID/serial # Fax #Account #Web URL Email addressFull faced photosIP address Biometric identifiers Data of patients who did not sign the authorization 16 identifiers excluded from a limited data set (HIPAA)

6. 6 Why opt in? The Power is in the Numbers – A Large Pool of Data is Needed Community The HTCPatients 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