0.0.1 - ci-build
0.0.1 - ci-build
ShiftPrivacyExamples, published by SHIFT-Task-Force. This guide is not an authorized publication; it is the continuous build for version 0.0.1 built by the FHIR (HL7® FHIR® Standard) CI Build. This version is based on the current content of https://github.com/SHIFT-Task-Force/demo-fhir-data/ and changes regularly. See the Directory of published versions
16 y/o Monica "Mo" Rambeau. Currently attends boarding school at MouseHouse Academy in Orlando. Parents are divorced and mother (Maria) lives in Boston, Father (Frank) lives in Orlando, FL. Monica grew up in Mom's primary custody in Boston, and is now in college near dad in Orlando, but spends most school vacations back with mom in MA. She did establish FL residence with dad as MouseHouse Academy gives in-state tuition, and is on her Frank's employer-sponsored health insurance (It's not Easy Being Green, Inc. or "Green"). Maria and Frank have shared custody. Monica receives her healthcare at a number of different entities: her school health center, a private PCP in FL (who has treated her asthma when she visited her dad since she was young), and MA Community Health Center when she is with her mother in MA. Monica's medical history is notable for chronc constipation, for which she takes Miralax, moderate persistent asthma for which she uses a Pulmicort Flexhaler BID and albuterol PRN, and an allergy to amoxicillin (hives). Monica is sexually active with one M boyfriend.
Yesterday, she presented to the health system in MA where she is tested for gonorrhea, chlamydia, and HIV; testing is sent to a 3rd party lab. Gonorrhea and HIV are negative. MA has a state law requiring additional consent related to HIV (which some entities interpret as any HIV testing and some entities interpret as positive HIV results only). Chlamydia came back positive today; Azithromycin for the patient as well as Expedited Partner Therapy are provided to the patient through a Title X clinic grant supply of medications.
Chlaymida is a reportable disease in MA and a public health worker follows up with all patients to make sure they have taken their antibiotics and that EPT has been completed. Monica wishes to not share her data with the public health department but is told this is not optional. Monica states that she at least wants DPH to only be given the minimum necessary information and to not have any information about her gender identity, in case they speak with her parents.
Monica's boyfriend is bisexual, and he occasionally has unprotected sex with men. For this reason, Monica started PrEP at 16 years of age. This was originally prescribed by the MA Community Health Center, and is now continued by her school health center in Florida, but without the knowledge of her father's doctor in Florida - she wishes to keep this private from him given his relationship with her father.. MA requires additional consent to disclose any information about HIV-related treatment, including PrEP.
In MA, an ACO care manager typically follows patients on PrEP to check in on their treatment. Monica wishes to opt out of this service due to concerns her parents or others may discover she is on PrEP.
OB Hx: G1P0001.
For either option 1 or 2: All pregnancy and abortion care took place in MA. Monica does not want healthcare providers in FL to know about the abortion in MA due to concern for criminalization. Maria does not want either parent to know about her pregnancy or abortion.
Monica had a medical abortion at 9 weeks gestation in MA (mifepristone + misoprostol) earlier this year at age 16. This abortion was part of a more comprehensive medical visit that was billed to her father's insurance; she requests that information about the abortion not be shared with the payer.
Monica had a D&C abortion at 18 weeks gestation at age 15 in MA. She wasn't sure if she wanted to keep the baby, so she had a normal 1st trimester ultrasound at 10 weeks and a normal quad screen at 14 weeks, before deciding on termination. Monica's pregnancy services were payed for by the Healthy Start grant program; no bills were sent to her father's insurance for this. When she decided to terminate her pregnancy, she paid for this out of pocket, and requested that no information be sent to her insurance company.
Although Monica is in a committed relationship with her boyfriend and has had only male partners in the past, she considers herself bisexual, and considers her gender as nonbinary or genderfluid. Pronouns are "she/her" or "they/them." She only shares her SO & GI data in MA, as she is concerned about stigma at her school in FL, so does not want this information shared with them. While she is fine being called Monica, she commonly goes by "Mo" and asks that this be added as her preferred name in both MA and FL.
In MA, the state collects deidentified data on gender and sexual minority patients to report to a Health Equity task force. Petra wishes to opt out of this as well due to concerns about reidentification. The clinic staff advises her that this could impact the Commonwealth's ability to provide equitable care to patients such as herself, but she is adamant that she does not want to share this data, even in a deidentified manner.
At age 16, Monica started Loestrin 1/20 both for contraception but also to help with a history of irregular periods; this was continued at her university health service in FL. The medication was originally sent to pharmacy in MA, and is now sent to a pharmacy in FL. Mo is okay with her school prescribing this but does not want her dad's doctor to know about it since he has a close relationship with her father. She does not want either parent to know about her use of the OCP. She remains concerned because it is currently billed to her father's insurance, even though it is prescribed by the school, and asks if there is a way to prevent this.
Mo's doctors recommend a diet/food tracker to help her manage her constipation. This app asks to receive data, including her OB history and current medications, from her medical record. She does not wish to share her OB History or OCP with the app due to privacy concerns, but is okay with it receiving information about her other (non-OCP, non-HIV) medications and allergies.
The FL Board of Medicine (BOM) is doing a review of her FL Private PCP (Dr. Nick Riviera)'s practice due to a complaint made by another patient; in the process, they request a review of a number of patient records, including Mo's. Under the OCR HIPAA Reproductive Health Privacy Rule, the BOM must provide an attention to Dr. Riviera's office stating they will not use reproductive health data in the chart for impermissible purposes (e.g. criminalization) before obtaining access to the records.
| Entity | Medical | Legal Sex | Preferred Name | Gender ID & Pronouns | Sex.Orientation | Sex. Hx & Contraception | STI | HIV | TAB Hx | All other OB Hx | Other Repro Hx | Genetic Hx |
|---|---|---|---|---|---|---|---|---|---|---|---|---|
| MA Health Center PCP (Dr. Hibbert) | permit | permit | permit | permit | permit | permit | permit | permit (1) | permit | permit | permit | permit (1) |
| MA Health Center OB/GYN (Dr. Lahiri) | permit | permit | permit | permit | permit | permit | permit | permit (1) | permit | permit | permit | permit (1) |
| MA Best Little Pharmacy (BLP) | permit | permit | permit (2) | permit (2) | deny | permit | permit | permit (1) | permit (2) | permit (2) | permit | deny |
| MA Third Party Lab (TPL) | permit | permit | permit (2) | permit (2) | deny | permit | permit | permit (1) | deny | permit (2) | permit | permit (1) |
| FL Private PCP (Dr. N. Riviera) | permit | permit | permit | deny | deny | deny | deny | deny | deny | deny | permit | deny |
| FL MouseHouse U Provider (Dr. McStuffins) | permit | permit | permit | deny | deny | permit (2) | permit (2) | permit (2) | deny | deny | permit | deny |
| FL Big Box Pharmacy (BBP) | permit | permit | permit | deny | deny | permit (2) | permit (2) | permit (2) | deny | deny | permit | deny |
| Mapple Diet/Food Tracker | permit | permit | permit | deny | deny | deny | deny | deny | deny | deny | permit | deny |
| MA ACO Care Manager for PrEP f/u (Ann Perkins) | deny (3) | deny (3) | deny (3) | deny (3) | deny (3) | deny (3) | deny (3) | deny (3) | deny (3) | deny (3) | deny (3) | deny (3) |
| MA DPH Care Manager for CT & EPT f/u (T. Fauci) | permit (4) | permit (4) | permit (4) | permit (4) | permit (4) | permit (4) | permit (4) | permit (4) | permit (4) | permit (4) | permit (4) | permit (4) |
| Commonwealth of MA (deidentified health equity data) | permit (4) | permit (4) | permit (4) | permit (4) | permit (4) | permit (4) | permit (4) | permit (4) | permit (4) | permit (4) | permit (4) | permit (4) |
| Payer (Green) | permit | permit | permit | deny | deny | permit (2) | deny (5) | permit (2) | permit (2) | permit (2) | permit | deny (5) |
| FL BOM | permit (4) | permit (4) | permit (4) | permit (4) | permit (4) | permit (6) | permit (6) | permit (6) | permit (6) | permit (6) | permit (6) | deny (8) |
| Mother, Maria (MA Portal) | deny (7) | permit | permit | deny (7) | deny (7) | deny (7) | deny (7) | deny (7) | deny (7) | deny (7) | deny (7) | deny (7) |
| Father, Frank (MA Portal) | deny (3) | deny (3) | deny (3) | deny (3) | deny (3) | deny (3) | deny (3) | deny (3) | deny (3) | deny (3) | deny (3) | deny (3) |
| Mother, Maria (FL School Portal) | permit | permit | permit | deny (8) | deny (8) | deny | deny | deny | deny (8) | deny (8) | permit | deny (8) |
| Father, Frank (FL School Portal) | permit | permit | permit | deny (8) | deny (8) | deny | deny | deny | deny (8) | deny (8) | permit | deny (8) |
| Mother, Maria (FL PCP Portal) | deny (3) | deny (3) | deny (3) | deny (3) | deny (3) | deny (3) | deny (3) | deny (3) | deny (3) | deny (3) | deny (3) | deny (3) |
| Father, Frank (FL PCP Portal) | permit | permit | permit | deny (8) | deny (8) | deny (8) | deny (8) | deny (8) | deny (8) | deny (8) | permit | deny (8) |
Notes: