posted by Amy Hillier

on December 28, 2007

Access to health information about individuals is restricted by federal law, as it should be. But what about historical health records? The US Census Bureau makes individual-level census records available to the public 72 years after the data are collected, under the (no-longer-true) assumption that most people would be dead before their records would be released.

Pennsylvania Hospital maintains patient records with names and addresses going back well before the turn of the 19th century. During the summer of 2007, Mapping Du Bois team members collected one year's worth of data--all the patients who visited the hospital in 1900. Records more than 100 years old are considered public, but I wanted to make sure Pennsylvania Hospital knew what we planned before we integrated the records with our census data for the Seventh Ward residents and posted it all online. Their Legal Department just ruled that patient records with names and addresses--even for patients from more than 100 years ago--constitute protected health information, so we will not be permitted to share these online.

Geographic Information Systems (GIS) and online data systems are presenting all kinds of new legal and ethical challenges for researchers. The movement toward more open access of data is sometimes in conflict with institutional instincts (and federal laws) to protect themselves from lawsuits. I appreciate the perspective of the Pennsylvania Hospital legal department even though I hope eventually to challenge rulings like this that limit the ability of researchers and students to learn from these rich historical data sources.