Privacy, Confidentiality, and De-identification

Privacy concerns who has access to a person and their information. Confidentiality concerns how collected data is handled and protected. De-identification is the process of removing or obscuring personal identifiers. Under HIPAA (US), two methods achieve de-identification: Safe Harbor — removing 18 specific identifiers (name, dates, addresses, phone numbers, medical record numbers, Social Security numbers, etc.). Expert Determination — a qualified statistician certifies that the risk of re-identification is very small. Anonymization goes further — the link between data and identity is permanently destroyed, making re-identification impossible. Key data security practices include: storing data on encrypted, password-protected devices; using study ID codes instead of names; keeping the key linking codes to identities in a separate, secured location; limiting access to identified data to essential personnel; using secure data transfer methods; and having a data destruction plan for when the study ends. A data breach can harm participants (identity theft, stigma, discrimination) and can end a researcher's career.