Patient Data Use Agreement

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Storyboard Text

  • Patty Patient wants access to all her health records, but has so many providers, she can't manage everything herself.
  • Patty meets Margaret Manager, a Health Data Manager (HDM) who helps people like Patty manage their complete longitudinal health record (CLHR).
  • Margaret  gives Patty a Data Use Agreement (DUA) and explains that this document  would give Margaret permission to collect all of Patty's health data, curate it,  validate it,  and bring any errors to Patty's attention. Both Patty and Margaret sign the agreement.
  • Patty will now be able to  see all of her health data, consent  to share  or not share her data, and review and/or annotate her records.
  • Margaret lets Patty know that in order to manage her complete health record she needs to give her providers permission to share her data with Margaret.
  • Patty meets with all her providers and signs a  Standard Data Release (SDR) to allow them to send all her records to Margaret.
  • Some time later, Patty sees her doctor for her yearly checkup.  The resulting  Health Encounter Data Receipt (HEDR) is sent from Patty's doctor directly to Margaret.
  • Margaret receives Patty's HEDR and looks it over carefully. She notices that this record has incorrectly listed Patty's current heart medication which, based on her most recent Cardiologist HEDR, was recently changed.
  • Margaret verifies this with Patty and, with her permission, makes an annotation in her record to note  the   discrepancy. She does not  change the record, only annotates it, in order to keep a complete history of what was collected. 
  • Patty authorizes Margaret to contact her doctor and ask them to correct their records to show her correct medication.
  • Margaret  continues to manage all of Patty's HEDRs from her providers including   her pharmacy, primary care, surgical operation, dialysis lab, physical therapy, and psychological counselor.  Although Patty has no plans to do so, she could fire Margaret at any time and hire a new HDR to manage her health records.
  • Patty is satisfied that she  now owns and has access to her complete health record. Her records are now complete, accurate, and  consistent across all her providers.
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