Family History is Key in Cancer, Yet Still Patients Wait

This week Deven talked about the difficulties people face when seeking access to a family member’s medical records, and it struck a nerve with me. In my blog post from November 13, 2018, I talked about my mother’s positive BRCA test result. This sequel involves sharing that test result with family members so they could determine what their next steps should be.

BRCA, as we soon learned, comes in two forms: BRCA 1 and 2. Eligibility for genetic testing of additional family members (or at least to have it paid for by health insurance) is predicated on which type of BRCA mutation was found in the initial positive test. So we all needed a copy of my mother’s results.

My mother requested that her test results be shared with family members. A flurry of urgent calls, texts, and emails ensued. We wanted to know where records of her requested test results would ultimately be shared. Days passed, and then another week, but still no date was given. My mum had received her first cancer diagnosis on her 50th birthday, and I was filled with dread, as my 50th birthday was just around the corner. The clock was ticking daily, and yet we seemed to be no closer to actually getting the records.

“Why is this so hard,” I kept hearing from my sister.  “Don’t they have a fax or email? Have they heard of Fed-Ex? What on earth is going on?” Good question! And not one that was easily answered.

According to the hospital holding the records (a major New York based cancer specialist), it was “a HIPAA violation” for my mother to request that her BRCA diagnosis records be sent to each of her family members. Really? Actually, it’s a HIPAA violation NOT to send records to anyone the patient requests.

We began to investigate the situation. Multiple escalations via all forms of communication known to man ensued. Bosses and bosses’ bosses were asked to intervene. Weeks passed by and finally - two and a half months later - approval was given for my mum to designate where the records needed to go. Our very own Mount Everest scaled!

So just how isolated an incident was this? Well after spending the last 6 months retrieving records for Ciitizen users and speaking to over 2000 HIM departments at major hospitals and medical centers across the United States to better understand their medical records release processes, I can categorically say: not isolated at all!

If I had a dime for every time I have heard medical records staff say they are so sorry, but that a patient really must come in person to retrieve medical records; or a dime for every time I have been told by staff that they will not even release basic information about the process for obtaining records like the fax number for an access request form to be sent to, this blog would have been written aboard my yacht in the Mediterranean, with an invitation for all to join!

And so the battle rages on within this archaic, outdated, frustrating, and ineffective system. But patients everywhere can sleep a little easier tonight knowing that Ciitizen is dedicated to transforming the industry by demanding what is right, what is legal, and by accepting no less than any patient, anywhere, deserves.

-Lisa Taylor, Health Records Retrieval Representative for Ciitizen