0.4.4 - ci-build
StandardPatientHealthRecordIG - Local Development build (v0.4.4). See the Directory of published versions
One of the most challenging aspects of programming a Personal Health Record is developing a longitudinal record to use as a baseline. Rather than specify what functionality should be included the PHR, this implementation guide endeavors to define patient persona benchmarks that PHRs should be able to either consume or generate.
| Patient ID | PatientName | Primary Diagnosis | .phr | .sphr |
|---|---|---|---|---|
| john-doe | John Doe | Diabetic | JohnDoe.phr | |
| 12724069 | Timmy Smart | Foster Child | TimmySmart.phr | |
| wsim001 | William Sim | wsim001 | WilliamSim.phr | WilliamSim.sphr |
| 1 | Candace Salinas | Asthma | CandaceSalinas.phr | |
| A | Ann | Patient relocation | ||
| B | Earl | Cancer diagnosis | ||
| C | Markus | Cardiac Rehabilitation | ||
| D | Wilma | Long COVID | ||
| E | Marcella | Complex chronic illness | ||
| X12 | Jamie | Diabetes | ||
| Y48 | Alyssa | Pregnancy | ||
| H32 | Choko | Asthma and back pain | ||
| J02 | Tommy | Obese and prediabetic | ||
| N76 | Naja | Rare familial development disorders | ||
| G43 | Sammy | COPD and Alzheimers | ||
| J97 | Allison | Single mother |
William Sim (DOB: 2013-01-01) is an 8-year-old non-Hispanic white boy with no significant medical history prior to February 2021.
(Initial diagnosis)
In February 2021 Will’s mother Cindy noticed he didn’t seem to be feeling well. He looked pale, seemed to have lost his appetite, had developed a fever, and seemed to bruise easily [1, 2, 10]. Due to his symptoms, Will misses several of his soccer games.
Cindy took Will to the pediatrician to be checked out. Upon examining Will, the pediatrician was concerned by his symptoms and sent them to a nearby emergency room [3]. At the emergency room they did blood work, including blood count, chest x-ray, and CT scan. The results: slight anemia and leukopeniam normal chest x-ray, and splenomegaly confirmed via CT scan [9], indicated that Will had leukemia. She was told go to a children’s hospital where there would be pediatric oncologists, specialists in treating Will’s condition.
(From PCP and ER to children’s hospital)
Cindy contacted the recommended children’s hospital who asked that she have her PCP and the ER send them all of Will’s medical records, blood work, radiology images, and CT scans.
(Mental health of child and caregiver)
(This part was added based on Growing Good feedback to add mental health of child and of caregiver – what you see child feel and go through + is that normal? What are best practices to help a child? Help alleviate stress within a family. … Understand commonality with others.)
Cindy is shocked, confused, and having a hard time processing all the complicated information about Will’s diagnosis [11]. She has a hard time remembering and understanding all of the information. She decides to start asking doctors for permission to audio record appointments so that she can listen again later if she needs to.
She sees behavior changes in Will after the diagnosis, such as worrying and becoming more withdrawn. She can tell he feels a loss of control [11]. Based on the advice of others she tries to provide him regular structure and a routine to the extent possible, allows him to make choices such as choosing which movie they watch, and tries to help him stay connected with his friends through video chats [11].
(Charitable organization to provide assistance with accommodations)
She was also worried about how their family would afford travel and housing near the hospital. Fortunately, the children’s hospital was able to connect her to a charitable organization [4]. She was added to a waitlist for a free place to stay during the course of Will’s treatment at the hospital [4].
(Treatment, including child being able to self-report symptoms and side effects to pediatric oncologist)
Will undergoes chemotherapy at the hospital. Cindy is worried about her son as he appears sicker during the treatment. She is reassured by hospital nurses and doctors that it is normal for Will to appear worse before he gets better [8]. Will feels homesick and misses his friends, school and soccer, but he’s able to participate in art therapy where he makes paper mâché crafts.
After 4 weeks of in-patient treatment, Will and Cindy go home. Will continues his chemotherapy treatment by taking a pill. Will is happy to be back at school, and to catch up with his friends. He’s not yet strong enough to play soccer but comes to practices and games and wins the best junior assistant coach medal.
Cindy helps Will write down his symptoms, like fevers on a printout that was in the discharge materials from the hospital. He brings this to his monthly checkups with his pediatric oncologist.
(Camp for kids with cancer/tracking symptoms)
Over the summer, Will goes to a camp with other kids with cancer. He sings by the campfire, learns archery, and paints. Briefly, he can escape from his reality of battling cancer and just have fun. At camp, Will makes friends. He talks with them even after camp ends. Will and Cindy learn tips and tricks from their families about managing and reporting symptoms.
(Cancer free)
After Will has done 6 months of out-patient chemotherapy, he goes in for his regular tests. Cindy learns from Will’s care team that he is cancer-free. To celebrate, the two go for ice cream, and go to an amusement park.
1 year later, Will continues to be cancer-free. Will is back at soccer, and is playing goalie, so far this season his team is undefeated.