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Megan is the mother of a child with a rare genetic syndrome. Here, she shares her story of overcoming many obstacles – from high fees to puzzling policies and procedures – to get copies of her daughter’s medical records so she can better coordinate her care.

I started by calling several local hospitals, explaining that I was trying to compile my daughter’s medical records. Everyone I spoke to was delightful and understood my plight. But it was hard to keep track of the different policies and procedures at each hospital. Why does each hospital have a different name for (essentially) the same department? 

Then, things got even more bizarre. I found out that the costs associated with getting records from each hospital differed wildly, as you can see in the table below. Physicians’ offices and research institutions can get patient records for free, but patients and parents are expected to pay (sometimes enormous) fees to access their own health information (after all, a single doctor’s visit can result in dozens of pages of records).

I also found out that while all the hospitals offered online records request forms, the forms required hand-written signatures. In some cases, the process for submitting the form differed based on whether a doctor was providing authorization. Then, for some hospitals, I had to mail in the signed forms, while for others, I could fax it – but none of them let me email the forms!

As a parent of a child facing complex health needs, navigating these obstacles added unnecessary stress and staggering costs. I wanted to be able to focus on my daughter’s health, but had to spend time making phone calls and jumping through hoops to get access to basic health information.

Now that I’ve witnessed firsthand the maze that patients and families have to navigate to get their health information, I’m adding my voice to the GetMyHealthData campaign because I believe that the more of us who share our struggles (and successes!), the faster problems can be identified and positive changes made.

I hope that down the road, it will be easy for parents like me to get and use their children’s health records. I invite you to join me in this effort by becoming a Tracer: Request copies of your medical records and let us know how it goes at https://getmyhealthdata.org/share-your-experience/.

Together, we’ll make it easier for everyone to get and use their health data.