Patient Data Protection and Privacy Expectations
The sharing of personal information, especially when health-related, is an important and sensitive topic. Particularly, in a time when personal online information is shared without the owner’s knowledge, patients have concerns about data privacy.
Patient privacy regulations in the United States were established in 1996 through HIPAA (Health Insurance Portability and Accountability Act). HIPAA was designed to keep patient healthcare confidential and allow access on a need-to-know basis among providers and patients. Similar regulations in Europe — General Data Protection Regulations (GDPR)— go into effect in the European Union on May 25, 2018.
When publishing or presenting a case report, anything that potentially identifies a particular individual should be excluded. It is helpful when writing a case report, to de-identify all information from the beginning, especially when writing in insecure locations.
Additional consent may be necessary for particular patients and certain information. A proxy can usually provide consent in the case of a pediatric or deceased patient. Protected health information (PHI) in the US for an individual, their relatives, employers, or household members include:
Names
Geographic regions smaller than states ( such as a city or county)
Date of birth or death, hospital admission/discharge dates
Patients over 89 years of age require additional consent
Telephone numbers, fax numbers, and email addresses
Numbers unique to a patient such as social security, medical records, insurance, etc.
URL (Universal Resource Locator) and IP (Internet Protocol) addresses
Biometric identifiers, full-face photographs and comparable images
Other unique identifying characteristics or codes
Here is an example from a published case report of de-identified patient information:
“A 50-year-old right-handed Latino man presented with worsening of previously stable chronic motor symptoms. He had initially developed sudden weakness and difficulty using his right upper extremity at the age of 16 years. He eventually had to learn to write using his left hand because of the severity of his weakness. His symptoms progressed over several years, eventually developing into severe symmetrical upper extremity weakness and atrophy in his distal muscles. His lower extremities were spared. Our patient stated he was diagnosed with a type of muscular dystrophy in the US when he was 25 years old. After receiving this diagnosis, he subsequently had a muscle biopsy in Mexico that reportedly confirmed his diagnosis. He had no family members with muscular dystrophy or any other neuromuscular conditions. His symptoms reached their plateau at this time. Because of the stability of his symptoms and his understanding of the disease course, our patient did not seek any further medical care for over 20 years. Upon returning to the US, he was seen by a primary care physician and referred for neurological examination to establish care as well as evaluate the worsening of previously stable chronic symptoms.” 1
Mora JR, Rison RA, Beydoun SR. Chiari malformation type I with cervicothoracic syringomyelia masquerading as bibrachial amyotrophy: a case report. J Med Case Rep. 2015;9:11. doi:10.1186/1752-1947-9-11.
David Riley MD is a co-author