Why it’s important to maintain your own personal health information, part 1

First in a series.

While many doctors and healthcare systems now use digital patient portals, I find value in maintaining my family’s personal health information (PHI) independently. Keeping a physical database of our medical information is important, especially for those of us with rare and chronic illnesses. It can be challenging to maintain, especially in a large family, but I’ve learned through trial and error that it’s crucial for clarity and communication with healthcare professionals.

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My daughter’s diagnostic journey

My adopted daughter, Leah, began experiencing chronic health issues when she was young, so my husband and I oversaw her healthcare. It was complex, and we faced many challenges over the years as we pursued a diagnosis.

To stay organized, I typed up a document that listed her medical history prior to adoption, childhood conditions, surgeries, and, most importantly, the timeline of her serious symptoms and the specialists we saw.

As we visited multiple specialists across various healthcare systems, we found they couldn’t always access information from other providers. Even signing permission and release forms wasn’t always sufficient. Crucial time was lost, and appointments were less efficient because the doctors couldn’t see all of Leah’s PHI while we were in the office.

So, I started keeping hard copies of blood work results, CDs of imaging scans, genetic testing reports, lists of medications Leah tried, etc.

By the time she was diagnosed with hereditary angioedema (HAE), we had two boxes full of hanging files, all labeled. If a doctor asked, “Has she been tested for …?” or “I would like to see the MRI of …” or “Has she tried this medication?” we had not only the answer but the data in hand. I also kept a notation document on my computer with her timeline of symptoms, dates of hospitalizations, prescribed medications, and outcomes.

Managing my own data

The long journey to my own HAE diagnosis showed me other reasons why maintaining your own PHI is crucial. Swells don’t happen on demand for doctors to see, and by the time you get an appointment, they could be gone. Unless you visit the emergency room for a life-threatening swell, doctors may have a hard time believing or understanding what you’re experiencing.

To provide evidence of my symptoms, I began collecting before-and-after photos of my various swells and rashes. This documentation also proved important because my blood work kept coming back normal. I did this dance for more than a year before being diagnosed with HAE with normal C1-INH.

Post-diagnosis appointments

Now that I have a diagnosis and treatment plan, I no longer carry all of that documentation with me to appointments, though I still keep files at home. I feel more comfortable having hard copies at my fingertips, especially when visiting a new provider. The information is easy to access, and I don’t have to rely on healthcare systems to release and share PHI in a timely manner.

I still bring my phone and laptop with me so I can access info about past appointments, my personal and family history, and my medication list, and take digital notes. I also request printed copies of my lab work, prescriptions, and imaging results for my files at home.

Not only do I feel more empowered and in control, but many professionals seem more engaged once they realize that I actively participate in my own healthcare.

Although the rest of our family doesn’t face health issues as complex as Leah’s or mine, I still care deeply about their health and well-being, which is why I’ve created PHI files for them as well. I will share more about that in part two of this series. Until then, consider how you can manage your own PHI in a way that works for you.

Note: Angioedema News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Angioedema News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to angioedema.