Do we want to submit this for any conferences:
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The "Adolescent" Use Case
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Dr Erica is referred to as both a PCP and a paediatrician, should we pick one term to use consistently? Is there some intention between the specific term? |
** Comments in 'Info' boxes are temporary notes to our team and would be removed later.
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The next few lines are notes that I removed from this section. It was unclear how to save this so that you can see what was there:
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3. Policy that impacts the use-case
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Alternate Intro, separating IT from the story
This is a story about a young female patient. As a child, her mother, as her guardian, is responsible for overseeing her health.
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 13, Julie is able to make her own health decisions, including taking control of her health data. Julie's story unfolds over several years, include 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) - Dr Erica
- Julie will attend annual appointments with her PCP
- At the age of 10, Julie is diagnosed with Asthma, and must visit an asthma specialist, Dr Robert. Dr Robert needs several elements of 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 13, 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
- At 16, Julie begins to experience sex and also begins using alcohol socially. Julie thinks her mother might not approve, but Julie does share this information with her paediatrician in confidence during her annual visit. Her paediatrician discusses these details with her during the annual visit and makes notes in her record. Her paediatrician 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 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 the infection.
- Several months later, Julie experiences troublesome acne. Her PCP sends her to a dermatologist.H However, Julie wishes to keep her sensitive information from her previous encounters private.
Throughout Julie's journey there are many places where Health IT is used, or could be used, by Julie and her mother to have more participation in her care. In addition, there are several policies that must be understood and enforced by both people and technical systems as Julie receive 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.
3. Policy that impacts the use-case
"Policy" covers many different elements, (think about bolts) from data privacy and security requirements to the legal landscape the defines how health systems must operate. For example, who is liable to protect health data. Often the implementation of policy excludes the most important person - the patient who is the subject of the information
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For the first section, when our use case describes basic UMA, I think this will be a good place to explain what UMA has over oAuth and highlight the increased security.
5. UMA application to use-case (steady state) *needs a diagram'
This section present's one possible health IT system, however in reality there is huge variations in technical services available and provided to patients. (addressing the policy and leveraging the features of FHIR and UMA)
Is delegation in this section? Yes, this would be the delegation section where we show control moving from Julie's mother to Julie. But she is still only 13, so she is educated and the state changes, but no information is shared here.
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