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Status of This Document: This is an Editors' Draft Report produced by the User-Managed Access (UMA) Work Group. See the Kantara Initiative Operating Procedures for more information.
Copyright Notice: Copyright © 2021 Kantara Initiative and the persons identified as the document authors. All rights reserved. This document is subject to theKantara IPR Policy - Option Patent & Copyright: Reciprocal Royalty Free with Opt-Out to Reasonable And Non discriminatory (RAND) (HTML version).
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This is a story about a young female patient. As a child, her mother, as her guardian, is responsible for overseeing her health. Julie’s pediatrician provides a system for their patients to securely share their data.
While she is still a child, Julie’s mother manages and controls Julie's data as her proxy. In the state where Julie lives, at the age of 1314, Julie is able to make her own health decisions, including taking control of her health data. (However this age policy will vary by region, these complexities are discussed further in section policy) Julie's story unfolds over several years, include including many health events, and involves many people:
- Julie Adams, female, Black, Hispanic, English speaking
- Sue Adams, Julie’s mother and Proxy, 45 years old
- Father does not have access to her clinical data but pays the health bills (should we remove this entirely, can introduce in a final "discussion/future" section: "An additional complexity of the health care system is how payment and insurance work. In Julie's case, he father hold's an insurance policy and pays the bills, but does not play an active role in her life and both Julie and Sue don't want him to access Julie's health information")
- Providers
- Dr. Erica - PCP
- Dr. Robert - specialist – asthma
- Dr. Jones - dermatologist
There are many events and encounters through her childhood, this report will touch on the following
- As a child, Julie's mother finds her a Primary Care Physician (PCP)
- Providers
- Dr. Erica - Pediatrician
- Dr. Robert - specialist – asthma
- Dr. Jones - dermatologist
There are many events and encounters through her childhood, this report will touch on the following
- As a child, Julie's mother finds her a Pediatrician - Dr Erica
- Julie will attend annual appointments with her PCPPediatrician, Dr, Erica
- At the age of 10, Julie is diagnosed with Asthma , and must will visit an asthma specialist, Dr. Robert. Dr. Robert needs several elements of access to Julie's health record in order to effectively provide care. At the end of the appointment, he prescribes Julie an inhaler
- At the age of 1314, Julie is able to take a greater role in managing her health, including control of her data. At her annual appointment, this new responsibility is discussed between Julie , Sue and Dr. Erica. Julie is educated on how to manage access to her clinical record.
- At 16, Julie begins to experience sex and also begins using alcohol socially. Julie thinks doe not feel comfortable discussing this with her mother might not approve, but Julie does share this information with her paediatrician pediatrician in confidence during her annual visit. Her paediatrician pediatrician discusses these details with her during the annual visit and makes notes in her record. Her paediatrician pediatrician provides relevant educational information and discusses safe behavior, as part of her overall evaluation for multiple potential risks of adolescents in transition. During their discussion, Julie and her PCP pediatrician agree she should be using an oral contraceptive and it is prescribed. Julie is also tested for STI, which comes back positive. Julie is prescribed Zithromax to clear for the infection.
- Several months later, Julie experiences troublesome acne. Her PCP pediatrician sends her to a dermatologist. However, Julie wishes to keep her sensitive information from her previous encounters private.
Throughout Julie's journey, there are many events where health information is accessed by Julie or other specialists. Those events are where Health IT would - or could - be used by Julie and/or her mother to have more agency and participation in her journey. In addition, there are several policies that must be understood and enforced by both people and technical systems as Julie receive receives care and transitions between different health providers. The following sections will expand on the complexity of health policy, introduce UMA and FHIR and finally show one way a UMA ecosystem can improve Julie's interaction throughout her journey.
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