The true value of personal health data is often in the story it tells or foretells.
According to my electronic health record (EHR), I had breast cancer. And I had two mastectomies. And I took Tamoxifen, a drug to keep my hormone-loving cancer from returning, for over four years.
If you read a little deeper, you’ll also discover I had a colonoscopy at age 39. It was clean.
However, according to my EHR from another institution, I had a colonoscopy at age 37 and two polyps were removed. I also had a series of idiopathic headaches. According to my EHR from yet another institution (in another state), I had a miscarriage in 2000 and went on to have two full-term healthy deliveries after that. Strep throat took me down religiously twice a year. More headaches and migraine medication. However, these additional items are not reflected in detail within my current healthcare record.
Beyond my verbally sharing this information with my current care team, they would have no record of these realities.
There are even more health records of mine spread across the country. Yet, with these “chapters” of my health behind various firewalls, the complete story is only in my head. The burden of tying the highlights of my health history together for every new health care provider falls on my shoulders; a doable task but certainly not an easy task in the typical 15-minute visit window.
Like many Americans, I have access to a patient portal that is supposedly an accurate representation of my health history. However, as I just described, that history is incomplete. I’ve tried to sew all the pieces together by requesting my medical records from all the facilities where I’ve been seen or treated, but I’ve often been stiff-armed based on an erroneous understanding of the Health Insurance Portability and Accountability Act or HIPAA. These facilities falsely claim privacy policies prevent them from sharing my information with me, but as I have to remind them the ‘P’ stands for PORTABILITY not privacy.
In fact, as an individual, HIPAA gives me the right to access and receive copies of my health information as well as the right to request amendments to my health data. My ability to tell the complete story of my health is dependent upon that access, yet despite both my need for this information and my right to access it, there are bureaucratic roadblocks that prevent me from obtaining it. Simply put: there’s no incentive to share.
What’s the ordinary citizen to do in response?
In my own experience with breast cancer, a complete picture of my health could have prevented mismanagement. As an example, I quit Tamoxifen after only 4 years, 1 month and 29 days instead of staying the recommended 5 to 10-year course. Why? Because for over 48 of those nearly 50 months, I experienced random soft-tissue swelling, random bilateral rashes and a face tingling turned numbness that progressed to such a point I was running to a mirror to see if my left side was drooping. Since there was no documentation of these symptoms as a side effect of Tamoxifen, I was told to take Loratadine for swelling and have had three brain MRIs to rule out a tumor.
Almost 40 months into my course of Tamoxifen, my liver enzymes began to spike – an early indicator of non-alcoholic fatty liver disease or NAFLD. Through a series of conversations with my oncologist, my primary care physician and a third-party diagnostic testing company, I made the decision to stop Tamoxifen. My liver enzymes returned to normal within 6 months.
This development is not explained in my EHR.
Data, in the form of a comprehensive health record likely could have helped me avoid a couple of those aforementioned MRIs. From the very start, my current team struggled to understand that, historically, I am reactive to many things: soaps, shampoos, penicillin, sulfa drugs, ciprofloxacin, lanolin and a variety of other substances trigger rashes and soft tissue swelling in my body. Thus, starting on a new drug and having ‘undocumented’ side effects was not an unusual series of events for me.
When I asked to take a half dose, I was told, “We don’t have a protocol for that.”
Again, what was missing from my EHR was my history of having taken half doses of many (most) of the drugs I have been prescribed over the years and having therapeutic results. A comprehensive (including all of my past history) and complete (including my two cents) record would have saved time, money, and headaches.
The true value of personal health data is often in the story it tells or foretells. I can tell you from experience: having a single chapter or page doesn't suffice.
Stacey Tinianov is a breast cancer survivor and cancer community advocate. Despite following all the "cancer prevention" rules, Stacey was diagnosed with breast cancer six weeks after celebrating her 40th birthday and four months after her mother's breast cancer diagnosis. Since her diagnosis and treatment, she has become a vocal advocate for patient empowerment via health data access, shared decision making, collaborative education and community building. She is an active member of NCCS Cancer Policy Advocacy Team, board member of Bay Area Young Survivors, advisor for Camp Kesem SCU and President's Cancer Panel participant. She lives in Santa Clara, CA with her husband and two teenagers and can always be found on Twitter as @coffeemommy.