Cancer Patients Need to Take Control of Their Health Information

Conversations with fellow cancer survivors inevitably lead me to think about some matter or topic that I have never contemplated before and such has recently occurred again. The topic of our medical records was raised by a colleague as she shared about how a portion of her medical history was lost when she moved and how difficult it was to recapture that older information that may have served as a basis for understanding her current healthcare issues and I suddenly realized that I have absolutely none of my own records in my possession. I have always relied upon my primary care physician to have my information available to anyone else that may need it but when I now assess the situation in light of the fact that she has retired, I don’t even know what information she did have. And as I looked at the list of more than 15 doctors, testing facilities, hospitals, etc. that have bits and pieces of my medical history just since my cancer diagnosis, the idea of gathering it all became a task that was truly overwhelming.

Regardless of what you personally choose to do, you may wish to give consideration to gathering your complete medical history and information into one single file from which you can share all or part of that information as you desire. Barbara Jacoby

It was at this point that I learned about a new Company, “Ciitizen”, that has just opened its private beta testing program to all breast (men included), lung, pancreatic and now cholangiocarcinoma patients (use Invite Code LetLife) to “turn unstructured documents into actionable data. With an organized and accessible health history, patients can easily share with doctors, researchers, and family members. This was very enticing to me for purposes of having a complete record of my own history to provide to my new primary care physician. But, I also recalled another time when I would have been able to easily draw upon such an awesome resource. When I was about to have my parathyroid surgery, I was concerned about my anesthesia since I had had a perfect outcome after my double mastectomy and expander placement surgery but a scary outcome after my first reconstruction surgery. So I contacted my plastic surgeon and asked him to provide my parathyroid surgeon with the type/amount, etc. of anesthesia that I was given during the first surgery to produce a successful experience for this surgery as well. This immediately took the stress out of my having to having anesthesia administered once again and made the whole process so much easier for me.

We are entitled to have all of our patient information at every level regardless of what you may have previously been led to believe as you can further confirm when you visit the Ciitizen site. The importance of this access is extremely important in ways you might never have imagined. You may have seen one article that I posted wherein a medical doctor writes about why a patient needs to read their doctor’s medical notes. Old notes recorded before the advent of electronic health records are written there. In addition, new records may be “cut and paste” versions that do not accurately reflect the original posts and may even create misinformation. This gives you an opportunity to correct any items that may actually appear on your record that may have been changed and/or updated over time.

You may have also seen the post that I shared about a medical practice that was shut down after a ransomware attack took control of its computerized medical records. The two doctors running the practice refused to pay a $6,500 ransom to retrieve the files, so hackers wiped out the entire computer system, and all patient data was deleted. If you have your own data collection under such circumstances, you would still have access to everything that may have been deleted under such circumstances.

Ciitizen’s goal is shared as follows:

“Our mission is to provide Earth’s 7.3 billion ciitizens with control of their comprehensive health information and give them the choice of sharing it (or not) with whomever they want. Period. With this new ownership, patients can share their health history with caregivers, share for second opinions, and for researchers who may hold the answer to their treatment. Or not. Empowering patients begins by giving them options. As a Ciitizen (pun intended), patients finally have choices of how best to manage their care.”

Regardless of what you personally choose to do, you may wish to give consideration to gathering your complete medical history and information into one single file from which you can share all or part of that information as you desire. To have a single repository of all of that most critical data where it is protected and preserved for your further use and updating as needed is a valuable asset for every single person and particularly those who are dealing with or have dealt with a cancer diagnosis. It may likely be the very best gift that you can give to yourself. And should you have any questions about Ciitizen, please feel free to contact stacey@ciitizen.com who is a fellow cancer survivor and dedicated patient advocate working to help anyone that she can.