Five Steps to Getting Your Medical Information In Your Hands

When you’re a patient, it can feel like you’re at the mercy of so many outside forces – doctors, the hospital system, insurance, geography, research – as well as the seeming betrayals of your own body’s aging, ill health and genetics. I get tired of being a patient, not only because it costs money and time, but because to be the best patient, you need to be vigilant. Vigilance is tiresome.

How can you look out for every eventuality? You can’t, of course.

Recently, I was at my parents’ house when their hospital system was shut down by a hacker. The system hasn’t yet said if it was a ransomware attack looking for money or if patient data has been stolen. But it is now nearly two weeks in, and like all the system’s patients, my parents can’t access their patient portals. Their doctors can’t look at records, planned courses of action or even easily coordinate with nearby labs for bloodwork. Some patients are being admitted to other hospitals.

My own parents have been affected and I am worried about them.

We rely on people outside of ourselves to keep our records safe and to be prepared to continue care and operations as smoothly as possible if something happens to make electronic communication impossible. That said, there are things we can do as patients to ensure that we still have most of our data if our records become irretrievable. If you, like me, have been lax about keeping all documents in a binder, here are some tips that might get you back on a better track.

1. The first step is to become familiar with your patient portal. This is the electronic location where you can find past and future appointments, medications, health issues, message your doctors and more. If you are the only one with access to it, consider whether or not it could be useful to give log-in information to a spouse, child or other trusted person. If you decide to do this, be sure to update them if your access information changes, like if you change cancer centers or create a new password.

2. The reason the first step is important is because of the new 21st Century Cures Act, which made it federal law that eight types of health records be made available to patients, free of charge. More information is available through OpenNotes here, where you can also learn about exemptions to this rule, and in step-by-step format from the federal government here. On my cancer center’s patient portal, accessing records is now relatively easy and it is a straightforward process to download and save any or all of these, spanning seven years of treatment in the same system with multiple physicians.

3. If you are uncertain that downloading your records to your computer is enough, you can print them out (be ready for a lot of repetitive information) and/or save them to a flash drive or an external hard drive.

4. Scan images are not available on my patient portal. To get the images, I still need to request them in person – something I have only done once. I know this is an area in which I have been remiss, since having the images is important for a complete record. To get around what is an unreasonable burden for someone who already spends so much time at the cancer center, I turned to Ciitizen to collect all my health records, including digital files of scans. Prior to the 21st Century Cures Act, I’d used Ciitizen to collect my written records, but requesting scans requires checking an additional box. This company helps cancer patients across the United States access their complete records relatively quickly. There is no cost to this service, and the company has other aspects that might interest you, such as a clinical trial matching database. I am comfortable with its privacy guidelines, which are easily found on its website.

5. With all our health data now available electronically, subject to hackers and misuse, it is important to read about how companies and applications safeguard what you share. If you’re unsure that something is safe, err on the side of caution and don’t share your data until you are satisfied about safety.

It is also important to read the documents containing your health information. Sometimes patients find errors that could impact treatment and it is important to correct those. Triage Cancer has excellent information about medical records, including what to do if you find an important error.

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