By Sy Mukherjee, Fortune | February 21, 2019
Stanford and a compendium of industry partners has set out to create guiding principles meant to ensure the ethical use of digital health technology, Stanford Libraries tells Fortune.
Stanford University’s sprawling library system recently hosted a seminar attended by stakeholders in the digital health field, such as Proteus Digital Health (maker of the first FDA approved digital pill), and more than 30 other representatives from health care, pharmaceutical, and nonprofit organizations to get the ball rolling on 10 initial guiding principles for the sector. The aim is to make sure the burgeoning field of digital health doesn’t leave ethical concerns such as patient privacy and prudent data usage by the wayside.
“Libraries have long served as staunch advocates of protecting personal data,” said Michael A. Keller, Stanford’s university librarian and vice provost for teaching and learning, in a statement. “An academic library’s online and offline environments are designed to pique conversation and debate, and given the exponential rate of developments occurring in the digital health space, we offered to initiate the conversation and report out on results of the seminar.”
The initial guiding principles resemble a digital health patients’ bill of rights of sorts. For instance, participants concluded that, “Sharing digital health information should always be to improve a patient’s outcomes,” and “Patients should be able to decide whether their information is shared, and to know how a digital health company uses information to generate revenues.” The full set of guidelines is entitled, “Guiding Principles on Ethics in Digital Health.” You can read all ten of them here.
The rise of companies such as genetic testing firm 23andMe and the increasing ubiquity of technologies such as Apple Watch, Fitbit, and other wearable trackers to monitor patients and guide health care research has raised questions about privacy and the most beneficial way to use such tech to bolster patient outcomes. Some have questioned the manner in which genetic testing companies share their consumers’ information and sell them to partners such as drug makers, although firms like 23andMe point out that customers need to give their consent for this kind of data sharing.
Stanford Libraries says the guiding principles are just a first step in what will be an ongoing conversation among major digital health players. “We want this first set of ten statements to spur conversations in board rooms, classrooms and community centers around the country and ultimately be refined and adopted widely,” said Keller.