Amid the push to digitize clinical trials and health care more broadly, loss of privacy and personal autonomy often take a back seat to perceived benefits such as convenience and ease of participation. In a new paper, Duke University’s Eric Perakslis seeks to better define the potential privacy-related harms and suggest ways to mitigate them. He emphasizes that protecting privacy doesn’t just mean preventing identity theft, it means protecting a person’s right to self-determination. That latter goal becomes exponentially more difficult in a world where patients’ data, even if de-identified, is being aggregated and sold for commercial purposes. “The more data collected on and about a person,” Perakslis writes, “the easier it is to manipulate that person’s behavior via targeted content” such as ads that pop on social media sites.
In an environment where such practices are pervasive and loosely regulated, Perakslis said purveyors of digitized trials and services should consider taking 10 steps to protect patients. Among them: ensuring that agreements with third-party businesses prevent secondary use of data, limiting the creation of new patient accounts to collect data, and auditing algorithms used to analyze data for accuracy and bias.
