Sitting in the office of Dr. Alexander Swistel at the New York-Presbyterian/Weill Cornell Medical Center, an internationally-recognized breast surgeon who has pioneered many of the newest advances in breast cancer treatments, I watched my 70 year old mother being examined after her third breast cancer diagnosis in 20 years. She was crestfallen. And I was confounded. Although we are still unraveling the mysteries of cancer - and why it happens to some people and not others - I couldn’t help but wonder how a woman who lives a five-star lifestyle, who maintains the ideal weight for her height, works out regularly, hasn’t touched dairy for over 20 years (heaven forbid sugar or gluten), and drinks water that has been perfectly PH-balanced via her $5000 counter-top machine, could possibly have cancer again?
Desperate for an answer, I blurted out; “It has to be genetic!” Carried away with my new powers of diagnosis, I forged ahead: “Is it possible she has BRCA?” Without missing a beat the reply was swift and curt. “No, she isn’t BRCA”. Clearly this information didn’t sit well with me. “How do you know that?” I retorted, quickly adding that she displayed all the markers. Dr. Swistel seemed to have already tired of my line of questioning. He stopped what he was doing and turned to me, his head cocked patronizingly to one side. “Would it make you feel better if I had her tested?”.
Although the wait would be over a month, I knew it then. She had it, I had it, my sister had it. But it turns out so does my brother and so do my nieces. So how was it that this simple blood test was overlooked for more than two decades? The answer is elementary: my mother’s medical records were incomplete. Had her full history been readily available, the doctor would have seen in a heartbeat that her previous diagnoses were overwhelmingly consistent with the profile of a BRCA1 carrier. And coupled with her Ashkenzi Jewish descent, he would also have known my family members were prime candidates.
And so began the inordinate struggle to get her test results shared among our family, a critical component of ensuring accurate genetic testing for us all. It was incredibly complicated. Selling my company to Disney was less involved than the process of obtaining and sharing health data. Yet, we are just another story in an endless stream of those who face inexplicable obstacles in attaining a patient’s medical records. Critical information that affects not just the patient’s outcome, but that of the family members as well.
Because of the overwhelming frustration, the fragmented and laborious process of medical records retrieval is too much to handle for so many. But not for me. Like all good things in life, timing is everything. As luck would have it, I was brought on as a consultant at Ciitiizen to help better understand the issues surrounding this retrieval process, and to help implement measures to correct it.
From my experience, the solution is surprisingly clear: health information management departments do not understand patients’ rights.
On top of that, privacy officers are not implementing revised processes to bring these departments into compliance. Why? Because change is hard, and the reluctance to change is real and daunting. If privacy officers remain immune to the plight of the people they are there to protect, and unwilling to take advantage of new systems and procedures that can eliminate these obstacles, then this pattern—one that has directly affected me and my family—is destined to continue. Change is what Ciitizen is fighting for. For you, for your families, and for the future of the personal healthcare industry.
Lisa Taylor-Belliveau is an Emmy nominated filmmaker and was the COO and co-founder of Real Savvy Media before selling the company to the Disney Interactive Media Group in 2010. She is currently a part of Ciitizen’s data retrieval team, helping patients obtain their health records via the HIPAA right of access.