When a Failing Heart Faces Information Blocking

A 65 year old patient with multiple comorbidities has been in & out of the hospital with what has recently been diagnosed as advanced congestive heart failure. The patient & family are advised to seek a 2nd opinion immediately to both confirm the diagnosis as well as to see if the patient is a potential candidate for a specific, last resort procedure. If the patient is deemed not a candidate for the surgery, at home hospice is advised to be urgently pursued.

The second opinion appointment can’t be scheduled until ALL pertinent records & images on CD are received AND reviewed by the 2nd opinion physician’s office (at another hospital, in another state). This pre-screening process is common at many disease-specific specialists’ practices, ensuring that only appropriate candidate patients are added to schedules that are already significantly overwhelmed with patient emergencies.

The patient & family asked the hospitalist and charge nurse to expedite forwarding records & images on CD to the cardiothoracic surgeon that would be doing the 2nd opinion. The family was told to go to the medical records office. Being that it was 6 pm, office was closed for the day.

The family returned to the hospital the next day, a Saturday morning, to pick up the patient being discharged & stopped by the medical records office which was, to their surprise and despair, closed for the weekend.

The patient’s portal hadn’t been updated with all the critical test results, radiology reports, or anything useful from this or the previous recent hospitalization. The were no MRIs, X-rays, or angiograms available, no lab work or any clinical notes. There was no way to report this back to the hospital to say: Why isn’t my patient portal updated?

Before they left the hospital, a nurse printed out a medical & radiology records request that the family filled out. The family was advised to go to the medical records office and SLIDE THE SIGNED REQUESTS UNDER THE CLOSED DOOR so when the office reopened on Monday morning someone would step on it receive it.

The family called first thing Monday morning to confirm the request was received and left a voicemail. They called 8 more times until finally someone called back that afternoon confirming the request was received. No further information was given as to when it may be ready except that the office was “busy”. The family begged in tears to expedite faxing the records and to have the images on CD be overnighted to the cardiothoracic surgeon’s office as this was the patient’s last hope. The medical records office representative said they would get the records faxed by end of week but that a separate request had to be sent to the radiology department to get copies of images on CDs. Also, CD’s could not be sent overnight as there was no mechanism to accept electronic payment or shipping for that request. Images on CDs would need to be picked up in person or mail standard US mail. The family needed to resend the radiology records request directly to the radiology department as the medical records department stated they did not handle those requests and they could not forward the request themselves as it was “not their responsibility”.

A member of the family needed to leave work early to go to the radiology department to demand a copy of images on CD now so they could be overnighted out of state at the family’s expense.

A patient’s heart is slowly failing and their last chance at hope is in a holding pattern due to a poor records request work flow. Imagine it was your parent’s heart, your spouse’s, or your own. What if this was your child’s heart?

A patient advocate had to step in to escalate and resolve the bottleneck, repeating many of the phone calls, faxes, and also going to the hospital in person, speaking to multiple managers and supervisors.

In 2020, this is the epitome of poor workflow, information blocking, patient harm, and insanity.

Unblock Health can ease the burden patients and their families face in acquiring records in a HIPAA compliant manner in the format they specify by automating the process. Instead of wasting precious time and effort pursuing multiple avenues hunting for medical records and images on CD, the patient’s advocate could have logged into Unblock Health to initiate a request and performed the following, entering:

  • basic patient information, name, date of birth, address, and a medical record number if available

  • the nature of the request and information blocking being experienced: for example, empty patient portal or emergency request to expedite records to an out-of-state specialist

  • the facility contact information that needs to receive the request

  • a signed medical records request, authorizing the hospital listed to release the patient’s medical records for emergency continuity of care purposes

  • the fax number, email address of the medical records office.

  • where the medical records needed to be sent: facility name, doctor name, their fax number, or mailing address.

  • contact information in case any questions arise,

  • a phone number and email for tracking and communication updates from the hospital.

The Unblock Health request is received by the healthcare providers office and a communication confirming receipt is sent to the patient. The healthcare provider may electronically inquire about the request if there are any questions or concerns, all documented and tracked within the Unblock Health platform. Unblock Health requests are triaged by urgency specified by requester. Urgent requests are flagged for expediting. Patients receive real-time tracking updates to monitor requests. Healthcare providers may send requested records to the specified healthcare provider as well as to the patient. Unblock Health requests are carefully tracked. If no response is received acknowledging receipt of the Unblock Health request within a business day for an urgent request, a reminder will be initiated. Requests that are ignored will be publicly addressed on a wall of shame and by tagging the facility on Twitter, tagging ONC, OCR, & HHS for awareness. Similarly, requests that are addressed and completed will be acknowledged in the public domain on the wall of data access champions, tagging ONC, OCR, & HHS for awareness.

It’s time to end information blocking by streamlining the way patients, their carepartners, and healthcare providers work together to handle medical records requests. In many cases, it’s a matter of life or death.

Do you have a personal experience with being unable to get a copy of your or your loved one’s medical records in the context of an emergency or earth-shattering diagnosis? How many phone calls and faxes did it take? Share your stories below. Share Unblock Health with patients struggling to get their health information today.

Yours in Unblocking Health,

Shahid Shah & Grace Cordovano


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