Reporter shares tips on how to get good data despite privacy laws

AHCJ Board President Felice J. Freyer

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Annie Waldman

Privacy laws, such as HIPAA, are the bane of health journalism. No matter how fervently you wish to preserve patient privacy, the legal protections often stand between you and a great story.

Unless you know the ways around them.

ProPublica’s Annie Waldman is an expert in overcoming or sidestepping privacy barriers. She analyzed de-identified government records to document the cruel treatment of disabled children at a Massachusetts school that disciplines by applying electric shocks. She managed to get inpatient discharge data from hospitals in three states to show how black mothers are at greater risk of birth complications.

Waldman told other reporters how she did it earlier this month at the National Institute for Computer-Assisted Reporting conference.

Today, AHCJ and ProPublica are co-publishing a tip sheet based on Waldman’s presentation at the conference. It describes the federal laws protecting the privacy of patients and students, and the strategies journalists can employ to obtain useful data without violating anyone’s privacy.

Additionally, today we are sharing a second tip sheet, also emerging from a NICAR presentation by a ProPublica journalist, about data on opioids. Charles Ornstein, a member of AHCJ’s Right to Know Committee and AHCJ’s former president, wrote an eight-page guide packed with advices and links to resources. The Right to Know Committee will archive this tip sheet along with other useful items on our HIPAA and Public Records pages.

AHCJ Board President Felice J. Freyer

Felice J. Freyer

AHCJ Board President Felice J. Freyer is a freelance health care reporter based in Rhode Island.