Neurologically-related medical records are of vital importance to medical researchers. To conduct the neuropathological analysis, a brain bank must have neurological records. In order to ensure a donated brain is utilized for research, records must be available to researchers. In this way, brain donation benefits us all.
This webpage describes the process for supplying neurological medical records to the Mayo Clinic. Brain Support Network often shares detailed instructions that are specific to your family. However, these generic instructions will help most families get started on the process.
Requesting or supplying medical records is the family’s responsibility! This can be a time-consuming task. You might ask for the assistance of a family member or close friend. The Mayo Clinic does not order medical records. Nor does Brain Support Network though we will help as we are able. Brain Support Network has no legal authority to request records.
When to obtain or order records
Now! It is easier to focus on the task of obtaining medical records when stress is at a low level.
Plus, the Mayo Clinic now requires that neurological records be in its possession (or the family’s physical possession) prior to the brain donation!
It’s best to order records while the intended donor is living. If ordering records from a clinic, the intended donor (patient) can sign the records release form. Or can put an “X” on the signature line with a statement by the healthcare proxy that the patient is no longer able to sign. If downloading records from an online patient portal, access is available only while the patient is alive.
Mayo’s new requirement about medical records
The Mayo Clinic in Jacksonville, Florida now requires neurological medical records to be at the brain bank (or in the family’s physical possession) prior to the passing of the intended brain donor, otherwise the brain donation will not be accepted. (This is a new requirement as of late-April 2022.)
All families we have worked with previously have told us that they will do their best for ordering medical records. Unfortunately that is now insufficient for the Mayo Clinic.
Of the 1,000 families we’ve assisted with brain donation to the Mayo Clinic, only 15% have supplied the brain bank with neurological medical records in advance of their loved one’s passing. In many cases, families don’t supply records for six months! It has always been very challenging to obtain medical records after a loved one’s passing, and now many clinics are making that even more difficult with a myriad of unusual requirements. With covid, death certificates may not be available for several months. Hence, the new requirement.
Neurologically-related records only
The Mayo Clinic in Jacksonville, Florida requires records about the diagnosis and treatment of neurological symptoms. “Neurological” symptoms include dementia symptoms. Mayo asks for, “neurology appointment notes, neuropsychological evaluations, psychiatry appointment notes, swallow study reports, physical therapy evaluations, sleep study reports, genetics test results, lumbar puncture test results, skin biopsy results, and similar records.” Please provide reports of images, like brain MRIs and CTs, DaTscans, and PET scans; not the actual images. The types of records that are NOT needed include blood test results and progress notes for speech therapy, physical therapy, and psychological therapy.
Mayo is interested in receiving medical records from specialists such as:
– Neurologists and sub-specialists such as movement disorder specialists and memory disorder specialists
– Psychiatrists
– Neuropsychologists (especially for all types of dementia)
– Neuro-ophthalmologists (especially for progressive supranuclear palsy)
– Cardiologists, pulmonologists, and neurosurgeons (especially for Parkinson’s disease and multiple system atrophy)
Mayo wants all neurological records. In cases such as Parkinson’s Disease, where the intended donor has been seen for two decades by a neurologist, the most recent eight years of records is sufficient (unless the older records are easily obtained).
Many electronic health records include a “Lucy summary” which is usually a 10-15 page PDF summary of the patient’s overall health condition. The “Lucy summary” is not what Mayo is interested in receiving. While the Lucy summary can be helpful as an additional piece of information (sometimes it includes a recent medication list or may mention MRI results), families will need to dig further to get “encounter summaries” from neurological appointments.
No need to supply primary care or hospice records
In general, the Mayo Clinic is NOT interested in receiving medical information from primary care physicians (PCP) or hospice physicians. The only exception to this is if the PCP was the main physician treating the person for neurological symptoms. In that case, the Mayo Clinic is interested in seeing the PCP’s records but ONLY the part of the records that deal with neurological symptoms. Please call the PCP’s office to discuss this. The PCP’s office can do the excerpting or perhaps can send all of the records to your family so that your family can do the excerpting.
Obtaining medical records
It is easiest for the intended donor or family to download neurological records via the clinic’s online patient portal. Once downloaded, you can email these records to Mayo or upload them to the cloud, providing Mayo with a link.
If you cannot obtain access to the online patient portal, records must be ordered from medical records offices or clinics. A small number of medical organizations provide an online method for requesting these records. Most still request that an authorization form be completed and returned by fax or US mail to the medical records office. A few clinics may be visited in-person to request records. And some allow the authorization form and other documents be emailed.
If you need to submit an authorization form, many medical offices will accept the Mayo Clinic Medical Records Release form.
Larger clinics often prefer their own medical records release form be completed. If you are asked the reason for the records, you may select “patient request” or “other.” For “other,” you can write in “research.”
Regardless of how you may order records, we encourage you to have records supplied to you, ideally in electronic form (usually PDF documents). Second choice is CD (mailed to you). Third choice is paper (mailed or faxed to you). The advantage of your receiving the records is that you are then able to confirm delivery of the records to Mayo. The disadvantage of receiving paper copies of records is that there may be a fee to your family.
The alternative is to ask medical records offices to send the Mayo Clinic records directly.
Other documents may be required
If the intended donor (patient) is unable to sign the authorization form, many clinics require a healthcare power-of-attorney document and a legible copy of a government-issued photo ID (such as a driver’s license). Some require the healthcare power-of-attorney document if the patient is marking an “X” on the signature line.
If death has occurred, larger clinics require a death certificate. (Sometimes, a “next of kin affidavit” can be signed and notarized in place of a death certificate.) Clinics in some states may require the family provide a letter of testamentary, given by a probate court. If the intended donor has passed away and the family has no neurological records in its possession, the Mayo Clinic will not accept the brain donation.
Is there a charge for ordering medical records?
Generally, there should not be a charge for records being sent directly to another medical office, especially when the records are needed for “medical research,” “clinical-pathological correlation” or “brain bank research.” Each medical records office has its own rules. Sometimes offices require that the records are sent directly to the family and require that the family pay for these records. Some offices prefer to send the records directly to Mayo.
Now that you’ve ordered records, what should you do?
If you aren’t able to download records and have ordered them….
Very Important! With every records request, your family should call the medical records office and confirm receipt. If end-of-life is imminent, ask that the request be expedited (or marked “STAT”).
Follow up 1-2 weeks later to get a date when the records were emailed, mailed or faxed. At least half the time families call to confirm, they learn that records were not sent for various reasons. Often the medical records office notifies the Mayo Clinic of a problem, and the information is never given to the family. So it is important that the family follow up with each request.
We suggest you document all interactions about medical records.
How can records be sent to the brain bank?
If you have records in your possession or if you are directing a clinic to send records to Mayo, we HIGHLY recommend that records be sent to Mayo via email or posted to the cloud. Second choice is fax (with a confirmation notice). Third choice is by mailing with tracking and a signature required at the Mayo end. The least reliable option is by mail with no tracking. Some clinics have had to re-send records multiple times!
Records can be sent via secure email to: Dennis Dickson, MD
c/o Rachel LaPaille-Harwood, LaPaille-Harwood.Rachel@mayo.
Records also can be posted to the cloud — Google Drive, Box, or other online file sharing service — with a link to the file(s) sent via secure email to:
Rachel LaPaille-Harwood, LaPaille-Harwood.Rachel@mayo.
Records can also be faxed to:
Dennis Dickson, MD
Fax: 904-953-7117
Note: Only actual faxes are accepted, no digital faxes.
Medical records, including password-protected CDs, can be mailed (ideally with tracking and a signature requirement):
Dennis Dickson, MD
Mayo Clinic Jacksonville
Birdsall 310
4500 San Pablo Road
Jacksonville, FL 32224
Phone: 904-953-2439
If you mail a password-protected CD, be certain to email the password via secure email to Rachel LaPaille-Harwood, LaPaille-Harwood.Rachel@mayo.
Very Important! Again, if you are expecting that a clinic or medical records office will be sending records to the Mayo Clinic, your family should call the clinic or medical records office and confirm that records were actually sent and by what method. At least half the time families call to confirm, they learn that records were not sent for various reasons. We suggest you document all interactions about medical records.
Thank you for obtaining neurological records for the brain bank! This ensures the brain donation can proceed and that the brain tissue will be valuable to researchers.