Maintaining health records improves care with a PI diagnosis

A busy working mother of three, Diana Jamrok used to discard visit summaries after her kids’ doctor appointments. Then her son Emmett developed ear, nose, and throat infections as an infant and toddler. Continual antibiotics, ear tubes, and surgery to remove his adenoids didn’t help. He even developed a brain infection.

“From the time he was four months old, I knew there was something different about him,” said Jamrok.

Jamrok started a log in a Microsoft Word document of doctor and hospital visits, diagnoses, and medications after Emmett, then 3, had to undergo surgery again to remove his tonsils. After another surgery to remove additional tonsil tissue, she pushed for an evaluation of his immune system. Consulting the medical log, she pointed out to clinicians that he had 13 cases of strep throat in one year.

“I had proof. I said, ‘We have something wrong here.’ And they said, ‘Oh that can’t be. She’s just exaggerating.’ I think I got labeled as a helicopter mom, but I was asking, ‘Why is no one more concerned about these 13 cases of strep throat?’ I knew that something more could be wrong with him and when I brought that to the table they were like, ‘Oh yeah, you’re right,’” said Jamrok.

Testing confirmed her son, then 5, had common variable immune deficiency (CVID). She continued recording his illnesses and test results to submit to the insurance company as evidence he needed immunoglobulin (Ig) replacement therapy. The insurance company finally approved Ig treatment for Emmett at age 8.

“It’s extremely important to keep those records and gather data so that he can get the treatment he needs,” said Jamrok, who uses the health log and electronic records to help manage her son’s medical care.

Recording health history is essential when living with primary immunodeficiency (PI). Visits to providers, emergency rooms, and urgent care, combined with lab work, scans, hospitalizations, surgeries, and medication, generate extensive medical records. These documents are integral to informing clinicians about primary immunodeficiency (PI)—and impact interactions between patient and provider.

“Everybody is going to be different in how they keep their records, but the most important thing is to create a log that gives you the ability to give someone the most information so that you can get the best care,” said Colleen Brock, Immune Deficiency Foundation (IDF) manager of medical programs.

While it’s helpful to use electronic health records, experts recommend keeping hard copies of some documents, particularly ones that support the diagnosis and treatment of PI. Initial bloodwork and PI diagnosis are required for Medicare coverage and private insurance approval of Ig treatment and other medication. If those documents are lost and a person cannot prove they have PI, they must stop taking Ig treatment for six months and get retested.

“Keep a paper copy of those results and put it in a safe place,” said Brock. “You need that diagnosis and blood work no matter what age [you are]. Don’t rely on anybody but yourself to have that initial diagnosis and that initial blood work. Institutions sometimes delete their records, so it’s up to you to keep a hard copy.”

One way to organize health information is in a binder divided into sections, such as:

• Personal health history listing illnesses and how they were treated.
• Clinician type (primary care, specialists, emergency room, urgent care) with discharge summaries and visit notes.
• Hospital discharge summaries.
• Test results like blood work, urine tests, X-rays, and MRIs.
• Medications with the names of products and doses, particularly for Ig replacement therapy.
• Insurance forms.
• Legal forms such as a living will and power of attorney.
• General notes.

Brock said that keeping hard copies of medical records allows patients to bridge communication issues when electronic recordkeeping systems don’t connect. For example, if you live in a rural area and travel to the National Institutes of Health (NIH) for treatment, your local provider may have no way to share records. Or if you move from one state to another, providers in those states may not have the same recordkeeping system.

“If you have different institutions that don’t speak to each other, if you take your notebook to your visit, you can give them a copy so there are advantages,” said Brock. “Keeping a notebook will allow you to get consistently good care, especially if you are dealing with different institutions that don’t talk to each other. It allows all of the institutions’ records to be in one place.”

Another recommendation is to keep a health summary that can be presented at emergency rooms (ERs), urgent care, or appointments with new providers. The health summary should list major diagnoses, treatments, current medications, medication allergies, and major hospitalizations for infections and surgeries. Include doctors’ names and phone numbers.

In addition to bringing a health summary to ERs and urgent care, patients may present a PI emergency card, a transplant emergency card, a chapter from the IDF Patient & Family Handbook for Primary Immunodeficiency Diseases about their diagnosis, and a doctor’s note explaining their diagnosis and treatment.

“All of these documents combined address what somebody needs as a snapshot of your health,” explained Brock. “Plus, the health summary provides an overview so that years down the road you can see a pattern of illnesses and prepare a better health treatment plan if needed.”

People with PI may also keep an infusion log of their Ig replacement therapy. In the log, record the product name, the dose (how much you get and how often), what company makes it, and the lot number in case of a product recall.

“It’s important to keep a record of your Ig. If you have reactions or allergies to certain products, make a note of it and be sure to tell your provider and report it to the company that makes the product,” said Brock.

Finally, while health apps are becoming increasingly popular to track symptoms, keep records of illnesses, and manage medication, remember that health apps are not subject to HIPAA and could use or sell a patient's data unless they are developed by a covered entity such as an insurance company or healthcare provider.