We share our suggestions for ordering neurological records from UPENN (University of Pennsylvania Medical Center).
GENERAL GUIDELINES
As noted in our generic instructions for ordering neurological records from any institution, the brain bank:
- now requires that records be at the brain bank prior to the passing of the intended brain donor
- neurological records ONLY are needed. No primary care physician records or hospice records. In the cases of Parkinson’s Disease, only the most recent 6-8 years of records are needed.
- it is always easiest to download neurological records via the online patient portal. If you don’t have access to the online patient portal, records must be ordered from the medical records office or clinic. Records can be sent from medical records offices or clinics directly to the brain bank. One advantage of this approach is that there may be no fee to the family. One disadvantage of this approach is that the family has no real way to confirm that records have been sent.
- ideally, records should be sent to the brain bank by email or posted to the cloud for download by the brain bank. Second choice is by fax. Third choice is by mail with tracking. Last choice is by mail with no tracking.
- ordering records and following up with the medical records offices or clinics is the family’s responsibility
UPENN INFORMATION
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.
These suggestions are derived from speaking with staff from the medical records office and viewing helpful webpages, including:
Patient Access to Health Information – Penn Medicine
If you are the intended donor or the intended donor’s legal representative, and have access to myPennMedicine (or MyLGHealth) options #1 or #2 are recommended.
1. Share your online records with Mayo Clinic via myPennMedicine patient portal. (Note: Lancaster General Health has a separate patient portal, MyLGHealth.)
(Note: Before “sharing” access to your records, please ensure the records are “encounter summaries” that provide detailed appointment notes, not “Lucy summaries” that provide a general health summary.)
Through the “Share Everywhere” feature you can provide access to your records to another party with a one-time link.
2. Download your records online via myPennMedicine online patient portal.
(Note: Before downloading your records, please ensure the records are “encounter summaries” that provide detailed appointment notes, not “Lucy summaries” that provide a general health summary.)
Downloaded records may be submitted to Mayo Clinic by:
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Secure email to Dennis Dickson, MD, ℅ the Brain Bank Coordinator, Rachel LaPaille-Harwood, at LaPaille-Harwood.Rachel@mayo.
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Post to the cloud (Google Drive, Dropbox, Box, or other online file sharing service). Then email link to file(s) to the Brain Bank Coordinator, Rachel LaPaille-Harwood, at LaPaille-Harwood.Rachel@mayo.
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Fax to 904-953-7117 (Attn: Dennis Dickson, MD)
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US Mail to Dennis Dickson, MD, Mayo Clinic Jacksonville, Birdsall 310, 4500 San Pablo Road, Jacksonville, FL 32224-1865 (phone 904-953-2439)
3. Call your provider’s office for office visit records.
You may request a copy of your medical records from doctors’ office visits directly through your provider’s practice.
4. Email the UPENN Health Information Management (HIM) Department for hospital-based records.
You may email a request for your hospital-based health information through the Health Information Management department by emailing [email protected]. You will need to use an email address that UPenn has on file for you and provide your legal name, date of birth, the specific records you would like and how you would like to receive them. (UPenn may require additional information if necessary to verify your identity.) Or you may download the authorization form in step #6 and email the authorization form.
5. Complete the UPENN Authorization for Disclosure of Health Information form for hospital-based records. Please provide as much information as possible on the form, such as:
-> I am requesting my protected health information (PHI) from – If you have been seen at multiple locations, check the box for “All Penn Medicine Locations”, otherwise check the box for the appropriate facility.
-> I request my PHI to be released to – Unless you wish to have a personal copy, records should be sent to Dennis Dickson, MD, Mayo Clinic Jacksonville, Birdsall 310, 4500 San Pablo Road, Jacksonville, FL 32224-1865 (phone 904-953-2439, fax 904-953-7117)
-> Covering the period(s) of care – If you do not recall specific dates, use a broad date range to capture all the visits/appointments. Be sure to include an actual ending date.
-> I authorize the following PHI to be released from my medical records – Check any boxes that may apply. (Note: Mayo wants reports from scans, images, or testing but does not need the actual images themselves.) You may check the box for “Other Instructions” and add “All neurologically-related records”.
-> Behavioral Health Visits – Check “Yes” and sign in the Authorization section, If there have been any psychiatric or psychological appointments.
-> Purpose of requesting information – Check the box for “Other” and use any of the following examples as the purpose for release: “medical research,” “clinical-pathological correlation” or “brain bank research.”
-> If the intended donor is signing the form… You may sign, date, and return the completed form via email [email protected].
-> If the intended donor is not able to sign the form, the medical power-of-attorney should sign his/her name. The form requests that you state the reason the patient is unable to sign the form. When you submit the completed authorization form (options above), be sure to include a copy of the medical power-of-attorney document and a photograph of the medical power-of-attorney’s government-issued ID.
Unsigned or incomplete forms will not be processed.
-> Delivery Method – In order of preference for Mayo –
- Email: to Brain Bank Coordinator, Rachel LaPaille-Harwood, at [email protected]
- Fax to: 904-953-7117
- CD mailed to: Dennis Dickson, MD, Mayo Clinic Jacksonville, Birdsall 310, 4500 San Pablo Road, Jacksonville, FL 32224-1865 (phone 904-953-2439)
Email the completed form to [email protected].
Typically medical record requests are completed within 30 days. If for some reason, they cannot be completed, UPenn will notify you within 30 days.
For status and all other questions contact the UPENN Health Information Management (HIM) Department by email to [email protected]. We suggest you follow up with HIM within ten business days after submitting the authorization form. Inquire when the records were sent (or will be sent) and confirm the delivery method – whether by secure email, fax or mail. Make a note of the date and method of delivery.