Anna Waller was diagnosed with Cholangiocarcinoma in November of 2017 and by the end of that year had undergone what’s known as the Whipple procedure: an operation that removes the head of the pancreas, the first part of the small intestine, the gallbladder and the bile duct. After her recovery, she underwent chemo for six months, but the cancer eventually returned. At that point she was introduced to Ciitizen by the Cholangiocarcinoma Foundation in order to help collect her records as a way to improve her treatment options.
“I could feel it coming back,” Anna said during a recent conversation; “There were nodules in my lungs and eventually they found a small spot on my liver.” In January of 2019, her doctors had confirmed the recurrence, but were not recommending additional chemotherapy at that time. The plan was to monitor the cancer and then react as necessary, which posed a problem for Anna and her family engagements.
“My children live in Spain, so the only way I can see my grandkids and feel safe is with Ciitizen,” she said; “It was a comfort to me overseas because I knew the doctors could quickly see my info if I got into trouble over there. They wouldn’t necessarily speak English, but they’d be able to see my data.”
A longtime advocate of data ownership, Anna has all of her medical records backed up on CDs, but she admits that the medium is a burden. “Owning your own MRIs on CD is sort of ridiculous because you can’t easily send them around and you don’t necessarily have the software to look at it anyway,” she added; “I was in a situation recently where the only way I could get my PET scan to my oncologist was to overnight the CD. It was December, so they wanted to charge me $100. It was the dumbest thing in the world.”
Luckily for Anna, she was able to pressure the scanning center into sending the PET scan electronically to her oncologist, but the anxiety surrounding the experience left a scar. “I feel bad for people up against the system where they don’t have an advocate or help. I called my hospital once to get some of my information and the woman told me they’d never had a patient by my name. Imagine a major hospital telling you that? It’s a horrible experience.”
Currently, Anna is awaiting access to a clinical immunotherapy trial in the hope that she can continue to treat her condition. The anxiety surrounding her acceptance is only part of her difficulty, as locating additional trials is both time-consuming and stressful. “Part of my motivation to collect my data is to be able to get into other trials if they pop up,” she noted; “As a patient, it’s not fun to do this on your own. Tears often roll down my cheek when looking at the statistics. Sometimes my thoughts are: I hope I’m not eligible for this. It’s terrifying.”
As referenced in our previous blog, cross referencing a patient’s records against other patients with a similar diagnosis can help speed research forward and in some cases avoid the long process of clinical trial experimentation. Matching patients to trials for new drug therapies can take months if not years. Yet with an interconnected database of patient records, the answers these trials are seeking could possibly be found without the need for further testing.
Because of the difficulties Anna has faced, both in utilizing her medical information and sharing it to get the care she needs, she continues to advocate the importance of health data ownership to friends and family. “Everyone needs to have control of their medical records because you need them wherever you go. You cannot count on your hospital to manage them for you. They don’t share information. I think Ciitizen is the platform that people have been waiting for, allowing people to travel with their data safe, in their control.”