Thursday, August 22, 2019

Privacy Incident at Massachusetts General Hospital's Neurology Department

August 22, 2019

Massachusetts General Hospital (“MGH”) is notifying approximately 9,900 individuals of a privacy incident involving MGH’s Department of Neurology in connection with some of its research programs.  

On June 24, 2019, MGH learned that an unauthorized third party had access to databases related to two computer applications used by researchers in the Department of Neurology for specific Neurology research studies. MGH immediately began an investigation into the matter.  The investigation revealed that between June 10 and June 16, 2019 this unauthorized third party had access to databases containing research data used by certain Neurology researchers. 

The research data varied according to the specific research study and may have included a participant’s first and last name, certain demographic information (such as marital status, sex, race, ethnicity), date of birth, dates of study visits and tests, medical record number, type of study and research study identification numbers, diagnosis and medical history, biomarkers and genetic information, types of assessments and results, and other research information. Some of the data reflects a subject’s participation many years ago.  For deceased research participants, the research data included date of death, and, when available, summary autopsy results. The research data did not include any study participant’s Social Security Number, insurance information, or any financial information. The research data did not include any study participant’s address, phone number, or other contact information. The incident did not involve MGH’s medical records systems.

As soon as MGH discovered this incident, it took steps to prevent further unauthorized access and restore the affected research computer applications and databases. MGH also engaged a third-party forensic investigator to conduct a review and has contacted federal law enforcement as a precaution. MGH continues to review and enhance the security processes in place for its research programs.

MGH is in the process of notifying affected individuals. Since it is possible we have outdated contact information for some individuals, we are also providing notice on MGH’s website as permitted by HIPAA.  To learn whether your information was involved and, if so, what types of information, or if you have other questions about the incident, please call (866) 904-6219 (Monday-Friday, 9:00 am to 9:00 pm Eastern; Saturday/Sunday 11:00 am Eastern to 8:00 pm Eastern).  This substitute notice and toll-free number will remain active for at least 90 days.

MGH does not believe there are any specific steps research study participants should take because of this incident; the data did not involve any Social Security Number, insurance or financial information. However, we are also providing information below about general steps that an individual can take to protect their health information.

MGH appreciates study participants who have assisted with research at MGH, and it is committed to privacy and security of research information. Thank you.




Review Your Account Statements. Carefully review statements sent to you from MGH as well as from your insurance company to ensure that all of your account activity is valid.  Report any questionable charges promptly to the MGH Billing Office at the phone number listed on the statement, or for insurance statements, to your insurance company.

Provide any updated personal information to your health care provider. Your health care provider’s office will ask to see a photo ID to verify your identity.  Please bring a photo ID with you to every appointment if possible.  Your provider’s office will also ask you to confirm your date of birth, address, telephone, and other pertinent information so that we can make sure that all of your information is up-to-date.   Please be sure and tell your provider’s office when there are any changes to your information.  Carefully reviewing this information with your provider’s office at each visit helps us to avoid problems and address them quickly should there be any discrepancies.

Consult the Federal Trade Commission. For more guidance on general steps you can take to protect your information, you also can contact the Federal Trade Commission:


Postal Address:  

Federal Trade Commission

600 Pennsylvania Avenue, NW

Washington, DC 20580

Telephone: (202) 326-2222


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