Patient Stories: Johanes Swenberg

It’s unnerving to think our doctors might not have access to vital data like x-rays and MRIs when making important decisions about our health, but given the lack of interoperability between certain hospitals and imaging centers it’s an unfortunate reality some patients face. Just ask Ciitizen user Johanes Swenberg whose surgeon had to abort a life-threatening brain operation in the middle of the procedure when the necessary angiogram wasn’t made available.

Having suffered a stroke due to a vascular defect in his brain, Johanes’ care team had decided the best way to treat the issue was through a craniotomy and resection. “Some of it they could only see by getting in there,” Johanes explained, “but they found something they didn’t expect and to be completely safe before moving forward, they had to look at the angio image. We thought we had shared the proper information and we had provided disks with all the prior imaging, but apparently the angio imaging wasn’t included.”

Nevertheless, Johanes was prepped for surgery and put under. 

“The surgeon was unsuccessful in obtaining the imaging he requested from another hospital during the surgery,” Johanes continued; “The doctors ended up stopping mid-process due to a lack of data, but they were able to complete the surgery the next day after doing another angiogram in-house.”

Today, Johanes uses Ciitizen to make sure all of his imaging is in one place and under his control.

“I believe that everything about me should be available to me at any time,” he added; “I don’t want to have to think about my health data; I just want it to be with me wherever I go so I don’t wind up in another situation like that.”

Johanes’ feelings aren’t the result of a singular health scare. As a current lung cancer patient, his condition requires any future care team members to have complete access to his data. “I have my own unique case because the last time I had surgery, I had a pulmonary embolism and the doctors decided that they should put a filter in my carotid artery before any future surgery.” Johanes explained; “If I get in a car accident somewhere on the other side of the country, how are those doctors going to know about my condition? Without a platform like Ciitizen, how could I flag it for doctors moving forward?”

Beyond his own health requirements, Johanes worries about the ability to flag pre-existing conditions for others as well. “I know people who took common medicines which caused rare kidney failure. If they wind up needing medical care, how is the hospital going to know that without access to the health history? That’s why I believe in the mission of Ciitizen. Wherever it goes, however it evolves, I think portable health data is the future.”

Join Johanes and sign up with Ciitizen to take control of your health data.