As we continue to advocate for patients and help them get their records, we wanted to give the world an inside view into what can be a thankless, endless, and often fruitless process.
These are medical records which already exist in their entirety.
Records that are a patient’s lifeline to continuity of care.
Records that can provide access to life-saving clinical trials.
And lest we forget - records which are a patient’s right to have and to hold in 30 days or less.
Let’s take a peek at the timeline of a real request by Ciitizen for records on behalf of a real cancer patient. Brace yourselves.
August 20th, 2018 - Ciitizen submits a faxed patient access request form to a leading medical institution in New York. The request asks for all health records on file. Upon receiving no response to this rather urgent request, Ciitizen calls to check on the progress. On this first call Ciitizen is advised that the request has been outsourced to a records copy service and Ciitizen must follow up with them directly.
September 17th, 2018: Ciitizen calls the copy service company. The wait time to reach a customer service representative is over 15 minutes. The patient’s date of birth and name is given - the passport for receiving any information about a request - and Ciitizen is advised that there is no request on file for these records.
Ciitizen reaffirms that the medical institution confirmed the faxed request had been received and duly passed along. The copy service is unmoved by this information. They have nothing on file. Ciitizen is asked to re-fax the request. A new fax number is given.
Ciitizen re-faxes the request. Ciitizen places a second call to the copy service to confirm receipt of said fax. The copy service, citing their procedural policy advises Ciitizen that they will have to wait another 15 days to confirm receipt of the request form, let alone fulfill it.
In order to bypass this unacceptable delay, Ciitizen places a third call to the copy service; this time to the supervisor’s department with the goal of explaining that proof of the first fax could be provided, and to remind said copy service that the records in question belong to that of a cancer patient, to whom any additional wait would be extraordinary and life-threatening. A third fax number is provided and Ciitizen is once again asked to refax. This time Ciitizen is promised a call back to confirm receipt and to advance an expedited timeline for sending the data, given the amount of days that have already passed.
At 12.41 pm EST an agent calls Ciitizen. Shockingly the agent is both aggravated and annoyed at having to place this call, talking over our patient advocate and raising her voice in sheer frustration of our persistence. Dismayed by the agents tone, our patient advocate vehemently voices discontent at the sheer lack of professionalism, only to be hung up on!
Understandably furious, our Ciitizen employee reaches out to yet another supervisor; this time a gentleman in all senses of the word. He is horrified by the account and very much motivated to help us with our cause. He states he is now going to help with the records retrieval process moving forward, and requests a short time to review our original request. At 4.45 PM, Ciitizen receives a call back confirming the record request and a corresponding transaction number.
September 18th, 2018: The new supervisor calls our Ciitizen employee to confirm that the records will now be sent out. By mail. He supplies a transaction number advising that we could reasonably expect records within a week. He also offers that if we were to provide and pay for an overnight service then records could be expedited.
Given that the request form clearly, concisely, and specifically requests the records be sent electronically - i.e. by email - our patient advocate questions why such a request cannot be fulfilled. We’re told that records cannot be sent in such a manner due to encryption reasons, as this would be a HIPAA violation. (Side note - it is a HIPAA violation NOT to send them this way since the request asks for them in this format.) Our patient advocate politely points out that our form addresses that issue in the full context of the HIPAA law, therefore rendering the electronic release HIPAA compliant.
And then we’re put on hold. Five minutes later, the supervisor returns to the call with “great news.” An electronic link to Ciitizen is offered where Ciitizen can download the patient’s information with an access code. A link that provides immediate access to said records. Finally!
September 26th, 2018: Ciitizen receives an invoice from the company for the processing fees of these ready-to-go electronic records. Ciitizen pays the fee immediately.
September 27th, 2018: On day 37, seven days after the required 30 day time period for compliance, the link arrives.
So to sum this unsavory experience up:
7 phone calls
…and almost 2 hours of phone time to retrieve ready-to-go electronic records that are sitting waiting to be emailed out. And finally records are retrieved.
Now imagine that this responsibility befalls the patient - a cancer patient dealing with health issues that many of us can only imagine. It’s utterly inexcusable.
But in reality, this is what transpires every day at a mind boggling number of major hospitals and medical centers across the USA. Change has to happen and it has to happen now. This needed change is what Ciitizen is fighting for. For you, your families, and for patients across America.